Prologue 

This is my diary/log about how I dealt with my wife’s cancer and our journey through it.  She was diagnosed with Stage 4B Endometrial Carcinoma – an extremely aggressive cancer.  It was a body blow to us both. 

I met my wife later in life.  My soulmate – my entire world. And immediately, I went from loving husband to carer (and still loving husband of course). 

Being a ‘carer’ is difficult. We always care for the ones we love, but being thrust into that role is more than just loving someone.  It is a full-time – almost thankless – job.  But we do it for all the right reasons. 

It takes a toll. Physically, emotionally and any other word you would like to use.  It can cause issues within a family as well. 

Cancer is evil.  It hides, it is smart, it gives you hope and takes it away.  And sadly, it has a good winning percentage – especially in Stage 4. 

So, this is my story – sometimes raw – but we should not sugar-coat caring for someone you love, and the emotional roller coaster these journeys bring for everyone involved.   

It is hard and others need to realise what we as Carer's  can go through. 

While it is hard, we do it out of love – and yes, sometimes necessity. Losing someone through this is simply put, awful.   

Best, 

James 

London, UK 2023, 2024 

March-May 2023 

When Charity came home after work one night, she told me she had been bleeding. We immediately went to A&E.  After a 15 hour wait and a CT scan, nothing concrete was discovered.  A 'thickened uterus' they said.  An appointment was made with the gynaecology department for follow-up.  Charity attended that and was told she had a large fibroid (more about that later).  A biopsy was attempted -- and failed.  She was scheduled for a transcervical resection sometime in late April (4-6 weeks from this date). 

We had a holiday booked to go to Miami on April 6. I said we did not have to go -- but Charity insisted.  The holiday went fine.  Some bleeding, discomfort, but nothing to be seriously concerned with.   

We also had a holiday (weekend) booked for the end of April in Paris. That turned out to be vastly different. 

Charity felt very unwell, we came home as soon as possible, and our lives changed forever.  

The day that life changed 

Charity was feeling unwell because of complete Kidney failure. Here is why. 

When we arrived back from Paris, we went straight to University College London Hospital (“UCLH”). Charity was hospitalised and received nephrostomy tubes/bags which allows urine to drain externally. That saved her life.  Scans/Biopsies showed Endometrial Carcinoma that had spread to her lymph system.  This is Stage 4B. 

The first hospital misdiagnosed her. She did not have “fibroids” which is very unusual for these to grow in post-menopausal women.   

IF the first hospital did their job, she would have had a radical hysterectomy then... and that might have been before it spread to her lymph node (supraclavicular).  The lymph nodes are of course a primary way for cancer to spread.  If it gets there (this is what made the cancer Stage 4B), it is tough to stop -- if at all. 

In my opinion, the first hospital had now put her in grave danger. 

The cause was the cancer (mass) compressing her ureters which caused complete Kidney failure – since the urine had nowhere to go, the Kidneys just basically stopped working.  What was the point of working? 

After a failed surgery to perform a radical hysterectomy, palliative chemotherapy was prescribed (vs curative). This means the cancer cannot be cured... maybe slowed down... but not cured.  In their opinion of course. But that is all we had to go on. 

A disaster.  A tragedy.  Everything happens for a reason? What a load of nonsense.  God's plan?  This is why I have never been religious.  To me, this does not happen if there is a God.  Works in mysterious ways etc.  Rubbish.  But that is just my opinion.  Others will see it differently. 

It is now the end of May and Charity is home – awaiting chemotherapy to start on June 7th. We are dealing with this new reality.  In shock but dealing with it. 

May-July 2023 

The “Incident” 

I had an incident on May 29th.  Drank too much and very angry.  It was stuff that was inside me.  My relationship with Charity's son  is now broken.  He said on (May 26th) “something” that shrinks cancer -- like some tea/juice or food etc. He said he had "done the research".  I was wondering why the Oncologist just did not prescribe that instead of Chemo (my sense of humour)?  Anyway, this really made me angry, and over the weekend (not drink related) I could feel it making my blood boil.   

I did not mention this earlier, but I was married before, and my late wife died from Glioblastoma Multiforme (Brain cancer).  During that time, we looked at everything.  The science is just not there about tea/food etc.  Maybe it helps your immune system (which is helpful during chemo), but shrinking cancer?  No proof. None.  I do not blame people for searching (I did) but stick to the science.  Please! 

Back to the incident. 

I drank on Monday afternoon (not sure why.  I went for a walk, ended up at the pub then home, some wine, then some more wine...) 

Anyway, Charity left (with her niece) and went to her mothers for a few days. I went to Glasgow and had a talk with myself.  

For the record, I apologised to everyone who matters (Charity, Charity’s sons, her mother…) and did ask for forgiveness. Not sure if they did accept any of that?  I feel Charity's family (who are remarkably close), choose their family.  And I'm not one of them now.  The old "You can pick your friends, but you cannot pick your family" does not apply here.  Again, I could not care less.  I think I was always just Charity's husband anyway.  Maybe not, but certainly not worth my time now.  Others will take a different view of course.  Some will be waiting for me to “fail” – to get blind drunk and forget to take Charity to an appointment etc.  Sorry to disappoint but it’s not going to happen. 

Back to normal 

I came home June 4 (Charity on June 5th).  All good between us.  Her family probably 'tolerates' me now. But I could not care less about that.  She is my priority.  Nothing else.  (Of course, my kids, sister, Russell, work as well... but that is obvious). 

8 weeks later, and they must know I look after her better than anyone can on this planet -- and have done so and no drink. If I were such a drunken idiot, that would be impossible?  Of course, it would. 

July 27 

So far, all working as planned. Stayed off the drink, running again.  From a physical point of view, feeling very good.  Energy etc. Emotional state?  Not too bad - but recognise that underneath, life really sucks.  Our old life is over and the life we hoped we would have is probably gone as well.  We only have today of course... but I need an outlook.  Just the way I am.  I cannot simply live just in the moment.  It is why I update my retirement plan every day! 

Things are progressing fairly well treatment-wise.  CA125 (a blood marker of how active the cancer is) has gone from 466 (pre chemo) to 155 (after the first session) to 51 (after the second session).  The normal range is 0-35 so just about 'normalised'.  After the last chemo (third session), perhaps it is now in the normal range – we will find out in August?  The nagging issue though is whether it has moved to an organ and the next scan (today) will tell.  We are meeting with the Oncologist on August 8th to discuss this.   

Cancer as we know is pure evil.  It gives you hope then takes it away. The CA125 numbers are positive, but... where is it hiding and what will it do?  That is the troubling thing. 

The midpoint scan 

Probably the most important scan Charity will have. Why? It is the mid-point through chemotherapy, and this is the time they assess how well the chemo drugs are working.  The more aggressive the cancer, the better ‘response’ a patient will have.  This is down to the drugs being able to determine what is a fast-growing cell vs “normal.”  It is how these chemo drugs work.  Obviously, the more aggressive, the faster growing these abnormal cells are. This does not mean that the more aggressive it is, the better chance a patient has.  Just that there will be a response.    

I am over-simplifying this of course, but I am not an Oncologist and that is my limited understanding – which is enough for me anyway. 

The scan will look at her chest, abdomen, and pelvis. It will show how the cancer has regressed – and most importantly – has it metastasised (spread).  That is the worrying part.  My guess at this point is that her uterine cancer will probably be under control now.  But as the surgeon said when she gave us the diagnosis, that is no longer the issue and has no bearing on her overall prognosis. The spread to the lymph node is, and whether that has enabled the cancer to metastasize to an organ (lung/liver…).  

Note:  

The uterine cancer ‘shrinking’ will probably enable the nephrostomy tubes to be removed – which at least is a quality-of-life improvement. 

We’re not nervous about this (yet).  The results will be discussed on August 8th. That could be a life-defining moment – and yes, we will be nervous and anxious.  

July 28 

The district Nurse came today to change the Nephrostomy dressings.  Very routine now.  Charity looking a little down.  When asked why, she said she was sad.  She was sad because her son came over last night and the atmosphere was awful. She wants everything to be back to where it was.  I told her until he apologises, nothing changes.  I felt under stress last night and probably was aloof – she picked up on that.  I need to handle this better.  But it takes two, and that might be impossible. I really don’t want Charity to get down over this… I get it... but she has other priorities to focus on – surely. 

There is a birthday party tomorrow.  I originally said I wouldn’t go but have decided to – to support Charity.  It is for her niece.  She used to call me Uncle... no longer.  I suppose I’m no longer a part of her family.  This is why I didn’t want to go. Why feel uncomfortable and perhaps having others feeling that way.  No time for that.  This distraction needs to end. 

Reached out to Charity's son.  Basically, said we need to put this behind us – it will do everyone some good.  We’ll see.   

If it wasn’t for Cancer, none of this would have happened. 

July 29 

Birthday party today.  Charity feeling well enough to bake a cake.  (She is well-known for baking birthday cakes).  It’s good she is up and just doing stuff.  

Patients note: 

Staying in bed is not good for anyone – get up and force yourself to have a 5-minute walk... anything but bed! 

As for me, we’ll see how the party goes.  I will just have my sparkling water and hopefully we leave early. Will update later. 

Party was fine.  We were there for 2 hours or so.  Said Hi ... was greeted ok.  Glad I went to support my wife since she had fun.  She laughed a lot.  That was good for her. 

July 30 

Not much on today.  Watch the F1 race together.  Then the Oppenheimer documentary on BBC iPlayer.   

Had a nice relaxing day today.  These days are important.  Just try and get some normality into life. 

I just had a look at the calendar.  53 days until the last chemotherapy session.  Then hopefully these damned Nephrostomy tubes can also be removed.  That is a real quality of life issue. 

July 31 

Charity very tired today.  She did bake a cake on the weekend – but probably now paying the price. 

Patients note: 

Keeping active is of course a good thing.  Chemo though is a burden on the body.  Remember, chemo drugs are basically “poison”, and the toxicity is cumulative.  It will not get easier.  Drink more water than you think you need to “flush out” excess chemo. It will take a toll and difficulties are to be expected. 

Listen to your body and get rest when it tells you that it’s tired.  It’s normal.  You are the priority.  And you need to take care of yourself throughout this battle. 

August 2023  

August 1st  

Charity feeling better today.  You just do not know with Chemo.  One day good, the next? Who knows. But it is a price worth paying.  The problem is, it is not any kind of life for anyone and just when you feel a little better, along comes the next session. 

We are going away for the weekend.  We will not be able to do much of course, but a change of scenery and room service.  Now, that must be a good thing! 

August 3rd 

Back to the family dispute for a second. I was right in my assumption about how people look at me now after the incident. Apparently “some” and I do not know who it must be said, take a dim view of me after that.   

It’s sad how people can see the worst in me even when they are seeing the best in me. Nothing I can do about that. I apologised, asked for forgiveness but I suppose the sanctimonious remain. 

Closing that chapter forever.  

If anyone gets into a situation like this during this battle against Cancer, then close it off. Focus on the person you are taking care of – and remember why you are doing it in the first place.  Petty squabbles are not worth it – not worth the energy.  And certainly not worth the negative energy. 

We are off for the weekend to Sopwell House. Will not be able to do anything of note of course, but a change of scenery and room service sounds great about now.  Especially with the meeting with the Oncologist next week on the 8th now looming. 

Work does not go away. Being a carer now means I am writing this at 5am. That is the new reality. Time is even more precious.  If you are working, organise yourself.  It will pay dividends. 

Away! 

August 4th 

We have gone away for the weekend. It was a great idea. Just the change of scenery, room service, having dinner in the hotel restaurant.  All of it, removes a degree of stress.  Of course, the stress will come back, but for the moment, life is better. 

We will do some shopping tomorrow, eat lunch out somewhere.  For now, that is the biggest issue – where to eat. 

So, we will enjoy this.  Next week will come soon enough. 

August 7th 

Charity had a telephone “visit” with the haematologist.  When you are on chemo, you have much more of a chance of developing blood clots – and they insist on giving you a prescription for blood thinners – via injection. This is a real issue.   

Three months of this now and we have been asking for a switch to tablet form – which Charity will now start tomorrow!  Life is full of small victories.  This is one. 

We had a brief chat last evening about the oncology meeting.  Charity is anxious – we both are.  I am not certain how much she knows about what this really means.  The focus has been on her Uterine cancer, but the real issue was the spread to her supraclavicular lymph node.  I am hopeful, the chemo got there before it spread.  Tomorrow, we will have that answer. 

There is only good news and bad news tomorrow, nothing in between.  The best we can hope for, is of course, nothing in her lymph system or anywhere else (other than what we know is in her uterus). 

The worst is it has spread to organ ‘x’.  Maybe there is a middle-ground?  That it is still in her lymph node(s) but has not spread – but for some reason I think that is doubtful. 

My guess at this point is that it has not spread.  I see no evidence of her liver being affected (eye colour, skin colour, excess fatigue).  Neither have I observed lung issues (no shortness of breath and so on). 

Perhaps I am just wishing of course, but I am really trying to be objective as well. 

The waiting for information is the hardest thing.  There is no choice.  Try and work, do other things, just do what it takes to get your mind off it.  An almost impossible task. 

The midpoint results 

August 8th 

We arrived early.  First thing on the agenda (always) before a meeting with the Oncologist is blood work.  Chemo is poison.  Blood counts are important. 

With the blood work done, we waited for the Dr – and waited.  What a day for her to run behind schedule (and the appointment was for 09:00am). I had imagined that if she had bad news – cancer had spread – she would not look at us in the eye etc.  Just like a jury coming back after someone is convicted.  Apparently, they don’t look at the guilty.  There was none of that – my imagination running wild as it does when you just sit there thinking. 

The tumour in my wife’s uterus has now shrunk.  That is not a surprise.  It looked to me anyway (on pre-chemo CT scans vs now) to be about 50% of its former size -- which is still considerable.  But it’s moving in the right direction.   

If it had not shrunk – and even grown, then difficult decisions would have to be made. Thankfully, we’re not even close to being there. 

I asked the questions – which maybe my wife would not have asked – but needed asking.  What about the cancer in the Lymph node? The answer was she expects that to have responded well.  Hmm ok.  No hard evidence then.  I also asked whether there was any “sign” that the cancer had spread to her Liver and/or Lungs.  Here the answer was more definite.  “No, it hasn’t.” 

Here’s where we stand. 

Excellent: A good response to chemo – and able to tolerate the side effects. 

Excellent: She will undergo surgery (radical hysterectomy) after the 6th session.  The surgeon has confirmed that now, and that also means the removal of the Nephrostomy tubes – which is great! 

Mixed: Lymph node metastasis has probably been dealt with – but this is still an area of high concern. (Why the Dr did not ensure this was also in the scan is a problem for me… Why did she not think to do this?  Or another Biopsy?)  

I have no evidence, but it has probably metastasised already.  Just because cancer does not appear on a CT scan does not mean it’s not there.  It just hasn’t been detected.  So, a little “glass half empty” view there. 

All in all, much better news than I had expected.  I have been preparing myself for the worst.  “Plan for the worst and hope for the best”. 

For now, all good and we continue.   

Next chemo is Thursday, August 10th. 

August 10th 

Off to chemo now.  It’s uneventful.  It takes about 6 hours or so.  The routine is:  Check in, get weighed, blood pressure, IV drip and wait. And wait. 

The side-effects do not start until a few days later.  In Charity’s case that’s always around Monday and will last until Friday.  But keep in mind, each chemo session just builds up more toxicity.  It’s cumulative so each session gets worse.  So far – luckily – while it seems to be a little worse, it’s not too bad considering. 

Patient’s Note 

Tip: Drink lots of water.   Really.  It helps! 

It’s our wedding anniversary tomorrow.  I did manage to get a gift.  I will need to go and get a card today or early tomorrow.  Dinner tomorrow night in Mayfair (£££).  Hopefully Charity will be feeling well. 

August 11th 

It’s 1:26am.  I can’t sleep.  This happens when the mind starts over-thinking of course.  As a reminder, Charity was diagnosed with Stage 4B Endometrial Carcinoma (83% of patients don’t make it past 5 years).  Her scan indicates that there is no sign of it spreading to an organ – and chances are whatever was in her lymph node has been killed. 

A quick search reveals that a Cancer stage is not downgraded. So, stage 4B remains stage 4B.  But that’s what the Drs have indicated for their own reasons.  In my head, I’m now thinking that IF Charity’s scans were evaluated by someone now, how would they categorise it?  Surely not stage 4B. Stage 1?  Stage 2?  

As I have said a few times now, Cancer is evil.  It hides.  You live your life wondering – and waiting.  We have plans for our old age.  I just want to know how quickly I need to get on with them.  The realist in me – but there is no way I can find out. 

Strange thoughts to have on our Anniversary – but perhaps not as well.  Looking forward to our dinner.  She will look amazing.  At least, I know that. 

It’s now 08:39am.  When I went back to bed, we had a chat.  Charity feels more optimistic but is afraid to be optimistic – just in case we start to get negative news.  She said there was so much negative news at the start of this, it has been sort of ‘drilled’ into her.  I simply said embrace this positive period.  Who knows what happens to your body when you feel positive, smile, laugh and just feel good.  Doctors aren’t God – and they don’t know everything.  They don’t know how Cancer starts.  Do they know the effect of laughing on Cancer?  OK, taking it a bit far, but the point is: embrace today – if you feel good, then just let it be and feel good. 

I did manage to get an Anniversary gift.  It’s important to always remember the important things.  It also reminds us of who we are, why we are together, why we love each other and of course, makes life a bit “normal” in these trying times. 

Dinner tonight.  Can’t wait. 

August 12th 

Dinner was outstanding.  Charity looked great and the restaurant (in a 5-star London hotel) was incredible.  Always try and get out – do something nice – it helps! 

Second day now after chemo.  Pains starting, fingers getting numb and tingling.  Common side effects.  Charity is used to it now, but the “neuropathy” needs to be watched. 

If it gets worse, then they would reduce her chemo dose which is not what we want of course.  Two sessions to go so nearly done. 

This morning, we discussed going away in January or so.  I suspect the plan is: 

Finish chemo September 21st 

Surgery for the radical hysterectomy Mid-October 

Recovery – 6 weeks 

That means a recovery by the end of November.  Perhaps a scan by the end of December (3 months after the end of chemo) and we should be good to go for the middle of January -- or early February. 

Charity loves to swim, so we need to go somewhere warm.  I’m thinking about Cape Town, South Africa.  It averages about 29c in January – so fits the bill.  More on that much later if all is well.  Also, it gives us both something to look forward to – which is a lot better than just when is the next session, the next blood test etc. etc. etc. 

The plans for the upcoming week are simple.  Recover from the last chemo session.  I’m thinking this one might be a lot rougher.  I’ll make sure Charity drinks a lot of water – that sounds like the key to minimising the effects. 

An important note.  Yesterday we were talking about this disease.  I think she grasps that even though the scans are positive etc., there might not be a long time to go – how long in her mind I don’t know.  I said I would like to ask the Dr should we speed up the plans we have?  Charity said that’s just a round-about way of asking how much time she has – which she simply does not want to know.  Fair enough.  

But (in my opinion) she also needs to consider this.   

Assume she has 1 year left, then she would place a lot more emphasis on what is important to her (family…) than not.  If she had 10 years, then maybe we travel first and so on.  It’s a difficult one.  Personally, I’d like to know.  In fact, I need to know.  I wonder if the Oncologist would tell me.  I’ll see. 

Charity off with her Mum.  A little shopping but mostly just spending time together.  Another important thing to do.  Sometimes words do not need to be spoken. 

August 13th 

I made Charity breakfast as usual. When you care for someone, you learn how to cook better!  Always make an effort here.  Remember, your loved one wishes they could do everything they used to do.  Be sensitive to that.  But be loving and attentive.  When you bring breakfast in bed, or any meal for that matter, ensure it is on a nice tray.  Use some type of ‘tablecloth’ and make your loved-one feel special, cared for, and of course, loved.   

Nothing to do today – watch Football.  Charity resting.  Still feeling good.  Tired but good.   

Tomorrow (Monday) is when the side-effects usually kick-in. 

I’m back to looking at holidays for January-February time frame.  I tell you this, it’s a great distraction from ‘real-life’.   

August 26th 

I had an ear operation on August 18th.  I scheduled this to be in-between Charity’s chemo sessions.  She is well enough that she can look after me right now.  I’m ok, but my balance is awful.   

She had an MRI this morning.  This is a request from the Surgeon.  One more check I suppose to ensure that the operation (radical hysterectomy) can be done – and the pressure on her ureters has been removed.  Just guessing of course, but it must be something along those lines. 

We meet with the surgeon this Wednesday to discuss the MRI and the operation.  I am quite hopeful that this will be a positive outcome.  This Thursday will be the second last chemo session.  I cannot believe how time has gone by.  There is light at the end of this tunnel it seems.   

The next steps seem clear to me.   

Finish the chemo sessions, 

Surgery, 

Monitor every few months. 

The concerning thing is:  Since this is Stage 4B, although it hasn’t spread (that has been noticed), the thought of it appearing somewhere else will always be on our minds.  We will probably not talk about it too much.  But we will if we have fears and anxiety that simply needs to be aired out in the open.  We seem capable of this so far – which is good. 

Right now, all is good and we’re hopeful.  Nothing more, nothing less. 

Carer's  note: 

Always stay positive.  I know it’s easier said than done.  I was in a place when this started that I didn’t want to be.  We all must find our own way – come to our own way of accepting and living with a life-changing diagnosis.  Give yourself some time – not too much – but have serious conversations with yourself.  Then you just might be able to get on with things.  Your loved one needs you.  Yes, you are important too, but you must come second.  You simply must.  Accept that, make life as beautiful for your loved one as you can, then, you too can live.  There really is no other way. 

August 28th 

Appointment with the oncologist tomorrow.  This is the regular check-in before chemo on the Thursday.  Not expecting anything new of course, but for some reason, I feel anxious.  Maybe it’s the appointment on Wednesday with the surgeon.  No idea.  This will probably be life as normal from now on.  Always that fear lurking.  I just need to get on with life for today – nothing more. 

Charity feeling good though.  Started some medication (Hypericum perforatum) which is the active ingredient in St. John’s-Wort.  It might help with the tingling/numbness in hands and feet.  We’ll see.  I’m a little doubtful on that.  But no harm in trying. 

August 29th 

We went for the appointment with the oncologist this morning.  Part of this routine is blood work and a weigh-in.  Good news that Charity has put on 3 kilos in the last 3 weeks.  Being able to put on weight is good!   

There was an interesting part of our discussion though. The Dr mentioned “I can tell you more if you want…” and “Removing the mass (in the Uterus) will be good” and… “We know there is cancer here (pointing to her own Lymph node) and that cannot be removed…” 

The last part is what I am thinking of.  At the last meeting, she was non-committal here.  But what she just said was more definite.   I didn’t push her on this – not really my place, and I know my wife doesn’t want to know.  But this was the one area that seems to be the most problematic.  I wonder if she is trying to open a door as it were for some more realistic expectations. Although very, very subtle, I thought there was a bit more of: “Do you want to know my real prognosis?”  I could be imagining it, but my sixth sense is pretty good. 

Note: 

The oncologist expects a patient to lose about 10% of their weight throughout chemo. Losing weight is because the Cancer cells require more energy than normal cells.  It is also thought that cancer cells release chemicals that affects how your body controls appetite.  Furthermore, as your body fights cancer, this increased energy will also cause weight loss.  There are a lot of reasons.  It stands to reason then, that being able to maintain or put on weight can only be a positive sign?  Less cancer = more normal weight?  Anyway, that’s my take as simplistic as it seems.  But keeping things simple works.  

August 30th 

First, we had a brief chat last night.  Charity did catch on to the fact that the Cancer is probably still in her lymph nodes. “Probably” is worrying for both of us.  We just don’t know – neither do the Dr’s. 

Just back from seeing the Surgeon.  All as expected.  We have a date for Surgery – October 12th.  Always get dates locked in when possible! 

The Surgeon explained the difficulties of the operation – somewhere between a Hysterectomy and Radical Hysterectomy.  Some of it will depend on what she sees when she is operating.  She said last time, the imaging wasn’t 100% accurate.  She is hoping that this time, what the imaging is telling her is what she will see.   

All this money spent on CT’s, MRI’s and it isn’t quite accurate at times?  Pretty shocking.  Maybe that’s just the way it is?  I suppose so. 

In any event, the Surgeon is very risk averse.  Good.  I have confidence in her – and more importantly, my wife does. 

She is more “open” about the state of play though.  She re-iterated that this is palliative – how the cancer has spread and so on.  She came out and said this does not change the long-term prognosis (didn’t say what that was).   

This is why I really think they know what the prognosis is – but will only say if asked of course. 

What this surgery does do is get the tubes removed, and if (when?) the cancer re-appears, then it allows them to focus (control was the word the Surgeon used) on the recurrent Cancer. 

After the appointment, we had a coffee.  I just tried to be positive.   

This (surgery) will improve your quality of life. The Surgeon would not do this if she didn’t think it would, and that it would be successful. 

This allows them to focus on key problem areas in the future (if required). 

We know it is not in your lungs, your liver and they don’t know if it is anywhere else.   

All we can do is finish chemo, do the surgery, and do the check-ups and so on.  

If anything needs attention, then we deal with it then.  We can’t deal with things we do not know. 

Chemo tomorrow. Second to last one! 

Carer's  note: 

Keep things positive.  It can be hard.  You need to be careful that you don’t just say “words” -- but are sincere and completely convincing.  

It’s easy for anyone to see through insincerity.  That’s not a fault, we mean the best of course.  Just be careful with the words you choose – and how you deliver them. 

September 2023 

September 1st 

Time does fly!   

We had a very in-depth discussion last night about all of this.  It takes time to get to the point where things just need to be talked about. 

My wife said she is not in denial about any of this, but some other ‘state’.  For example, going shopping and feeling like not buying clothes in case she will never be able to wear them.  I didn’t know this – but that is the type of reality she is dealing with. 

I simply said, just buy the clothes and make them a symbol of... “Yes, I will wear these because this Cancer stuff is not going to beat me”.  What’s the alternative?  Seriously.  Sitting in a corner feeling sorry for yourself, or saying “Fuck you cancer, I’m here, and I will not give up.” 

I know which approach I would take. Which is precisely the approach she is taking.  I love her. 

She also mentioned that she is going to have a discussion with her kids and her Mum.  I’m not sure what about – and reasonably sure neither does she at this point.  It’s just that it is now time to address what is probably coming.  We do not know any more than previously.  But time is going by, and things need to be addressed.  Especially as we only have one chemo session to go.  Surgery after of course.  But the time is now. 

I was waiting for this, but she said she does not want me to drink myself to death. Paraphrasing a little, but I knew she would say that.  I wouldn’t of course, but historically, I have leaned on Alcohol a bit too much.  Hopefully not this time.  It’s a “rut” you get into. I can deal with what’s coming.  I know I can.  It will be intense, soul destroying, “everything destroying”.  But I need to not give in.  That will be hard. 

Chemo yesterday was the usual uneventful session.  Very routine now. 

Now, it is time to recover.  The symptoms are coming earlier.  That makes sense because of the cumulative toxicity of chemo.  But she has dealt with this so well up to now. Let’s hope it continues. 

The weekend ahead?  Charity seeing her cousin for lunch on Saturday.  Very nice and hopefully still up for it.  

This is a massive waiting game. 

September 3rd 

Charity is going to her Mum’s today to have a “talk”.  I think (really, I don’t know the details), it’s to start to prepare them for what’s coming.  We don’t know of course, but better to be prepared. 

She also mentioned to me that her family wanted her to prepare a will.  That makes sense.  She also has been asked (by her family) to prepare her “last wishes”.  I’m reasonably sure it wasn’t put like that, but they want her to have what she wants. So do I.  But after the “incident”, they don’t trust me.  I find that bloody laughable. 

Charity wants everyone to work together “in case” this disease wins.  Of course, everyone will.  I’m not evil and do have common-sense.  In any event, of course that’s how it will work.  She always comes first.  Always. 

Last point on this.  She asked me if I wanted to get buried with her.  She said “who knows you might re-marry”.  What?  I mean what the fuck? No chance.  I told her later I’m going to my grave with my wedding ring on.  Period. 

Let’s see how today’s chat goes.  I will not be there of course.  This is for Charity and her family.  She is brave for doing this – and of course sensible.  But, brave first.  I love her for that. 

Charity now back.  Apparently, her sons are worried that if she succumbs to this disease, then I will just get drunk for a while and not be contactable and… and… 

Ridiculous.  I asked her if I could use their crystal ball so I can also see the future and buy lottery tickets. They could at least come to me and say “Hey listen, we’re concerned about …”  but no.  They just sit there and think about shit that just won’t happen.  

OK, I get where it’s coming from. But the “incident” happened 97 days ago now. 

And, when I went through this before, I did not go to pieces. 

I did not fuck up then, and I won’t now. What I do with my life after all is “settled”, who knows – and right now, I don’t care. This could very well kill me as well.  But I will simply not make mistakes if this ends in Charity being taken by this awful disease.   

Count on that. 

I told Charity she has nothing to worry about – and she should not worry about her sons’ concerns.  That is the truth. 

I thought I had closed this chapter.  Hopefully now, it is. 

Note: 

You and your loved one talking to your families is the hardest thing you will do.  The key is to prepare.  Have a script in your head – and stick to it.  It helps keep the emotion in check until it’s said.   

Deal with the current situation – how the treatment is going, what you know and what you don’t.  Emphasise that everyone needs to be prepared for the worst but hope for the best.   

Planning for what your loved one wants – needs – at end of life is supremely important. 

Do not underestimate this – and do it.  As hard as it is. 

September 4th 

Yesterday, when Charity was out, I was just sitting watching TV.  Seemed lonely and it occurred to me that if I lose her, then this might be what life will be like.  Pretty awful. 

I need to think about life after Charity (if that happens).  I can’t just find myself just ‘sitting there’.  I need to do that anyway before I retire.  You do need a life.  

I’m not sure, but for some reason – without any evidence – a degree of finality has crept in. There could be years left of course.  Just not feeling that at this moment. And, the troublesome thing is, I have no idea why.  It flies in the face of what I know. 

September 7th 

Just getting on with this recovery period.  It seems that the Peripheral Neuropathy is a little worse – and somewhat different?  Charity is feeling it much more in her legs now.  Before it was “just” hands, knees, and feet. 

Today though it seems to have stabilised (1 week after the last session).  It’s not any worse and even seems to be a little better.  This is good since this needs to be watched and can cause the Oncologist to reduce the volume of drugs during the next session.   I suspect at this point though a reduction will not have a material impact. 

Summer has finally arrived in London – I know, it’s September!  But we are having nice days – and enables us to get out a bit.  Imagine all of this during winter?  Cold, dark, raining…  Would be even worse. 

We’re going out for a few walks.  Walking must be good – and of course, plenty of water.  Perhaps that is why she has not suffered as much as we thought she might.  Who knows… but in any event, walk and drink! 

September 8th 

Charity is ‘ok’ today.  Her legs are still “unsteady” but she’s able to bake!  That’s always a good sign. 

A new appointment has been made for September 28th.  A CT scan of chest, abdomen, and pelvis. At the next meeting with the Oncologist, I am going to ask about the presence of this cancer in her supraclavicular lymph node.  Will it show up as part of this scan if present?  I really doubt it since it is perhaps too high up? Or, should there be a biopsy done?   

I said to Charity… “We need to know what the state of play is – especially since this will be done after chemo has finished.” 

I understand Charity’s reluctance to perhaps know things that are not positive.  However, I feel- and it’s so much easier sitting here than where she is – she must know.  As I stated earlier, depending on the prognosis, it could shape how you live your life.  How much time do you spend with your family? How much time to do “bucket-list” stuff and so on. Without knowing, surely you are constantly wondering/worrying anyway?  Maybe it’s just me, but I’d want to know. 

The district Nurse came today.  No issues there.  When you care for someone, you need to stop what you are doing – no matter what – when you are summoned.  This is a change from just the “norm”.  A carer is on duty 24x7.  When the Nurse comes, I need to ensure everything she needs is laid out.  It’s not a lot.  It just makes things organised. 

Charity’s son (not the one I had the incident with) is upsetting her.  He’s constantly out of money – and is now behind in his rent.  This is serious. I just said… “Sit down with him and do an honest budget.  Where is the money going?”   

She doesn’t need this right now. And this affects me.  I gave him £2K for his car insurance.  It was supposed to be paid back every month in instalments. I suppose after the incident, he thought he’d punish me by not giving it back (just a guess – but he mentioned nothing.  Even if he didn’t have the money etc.). Not good.  I can deal with this, but Charity does not need this.  Period. 

Sunny weekend ahead.  Perhaps off to Charity’s Mum’s.  We’ll see.  I’m not a fan of going anywhere at the moment to be honest. 

Maybe I’ll take my laptop.  Have work to do anyway. 

September 9th 

Charity has a sore throat. Almost a guarantee that the chemo is causing this. But here’s what cancer does to you.  You start thinking that this is the cancer spreading -- without any evidence.  Every little ailment is now cancer. 

Maybe it’s something that you get used to?  Maybe not. My Mother died of cancer.  It started in her throat.  So, immediately, I make this connection.   

Every small pain – I run to the computer and search for (as an example) “How do you tell if you have throat cancer…”.  

What a way to live. 

Nice sunny and warm day today.  I think the plan is to go to Charity’s Mum’s house.  She should be coming down here.  She does drive.  Why have your daughter who is dealing with recovering from chemo make a trip?  Surely… you are healthy enough to work in the garden, go do this and that.  Just drive down here and see her. 

Little things like this piss me off.  

On another subject.  I find that mood swings (for myself) are quite common.  I can go from being happy to OK to miserable in the space of 30 minutes. No idea why. After a while, all of this becomes frustrating. Of course, Charity would swap places with me. Anyone with cancer would. It’s still difficult though when your life comes to a screeching halt. Maybe it’s the sun outside calling me, and I can’t do anything. Maybe it’s just that. 

So perhaps going through this in Winter is better after all?   

Carer's  note: 

Dealing with family – while secondary – is almost as stressful as being a carer.  First, they do not understand as much as you do.  Second, you can (almost) guarantee they think it’s easy to care for someone if they haven’t before. “What’s the big deal…”. 

I’m not suggesting having a visiting schedule – far from it.  Just ensure your loved one can cope with visits – or in the case above, able to travel.  Do not be afraid to suggest that visiting or being visited might not be advisable. 

Your loved one wants life to continue normally.  Well, it can’t.  And this needs to be communicated with sensitivity.   

You don’t need to be as sensitive with others.  Just stick to the truth. 

“Charity is not feeling too well at the moment after her chemo session.  Let’s do this another time. We’ll be in touch.” 

I find that people really don’t get it.  And one of the reasons is because it has not been explained how hard chemo can be.  

Remember, it is poison.   

Charity is also on Carboplatin.  This is platinum based.  You simply can’t tolerate this for any sustained period.  As good as this drug is at killing cancer, the side effects are significant. 

Communicating this is hard since it really is no-one’s business.  But work it in to a conversation about “chemo drugs in-general” when discussing your loved one’s condition and treatment. 

September 11th 

Charity’s throat is still sore.  We rang the nurse assigned to her.  It seems that a sore throat is indeed a usual side-effect.  However, just to be sure, we went up to the GP to have it checked out.  She confirmed it was just ‘red’ and nothing really to do.  However, she did prescribe anti-biotics.  Why?   Not sure.  Why prescribe something you just don’t need?  Is it any wonder that NHS costs are through the roof? 

Charity might be going to her Mum’s for a few days.  Tuesday, Wednesday, back Thursday evening.  She wants to spend time with her Mum – or maybe she wants to have her Mum spend time with her kind of thing.  Give her Mum a feeling that she is taking care of her daughter.  Good.  There’s not a lot to do right now.  Charity can basically take care of herself.  I’m just providing room-service of course.  Nothing wrong with that! 

In other words, I don’t need to go.  Everything will be fine.   

Managing medication right now is easy as well.  There’re only a few tablets per day and the Nephrostomy bags are so routine now, it’s just ‘normal’. 

I’ll stay here and work.  Doesn’t make much of a difference anyway to be honest. 

Much harder things to come I suspect.   

Note: 

Remember what I said.  If you feel good, enjoy life. Do what you should.  Never wait. This applies to Carer's  and patients alike. 

Carer's  are important too.  It is a thankless job.  Always take care of yourself.  Eat right, exercise if you can, no drink and stay focussed.  

It is only by doing these things that we can deal with what we are going through. 

September 12th 

It seems the side-effects are not getting worse.  However, it’s certainly the worst they have been.  Thankfully, there is only one more session to go.  A “few” more would not be possible.  At least at the same level of dosage. 

The decision would be… Kill the cancer or suffer longer term damage to basically “everything”. It’s easy to see how some will stop chemo and just say “OK, that’s it… let’s see what happens.”  Dreadful place to be in. 

I was wondering why there were 6 sessions (rounds) of chemo.  I think this is why.  It’s basically just about the maximum your body can take – probably the right balance between killing the cancer and permanent damage to other organs, nerves and so on. 

If Charity was scheduled for say 8 sessions, I am doubtful whether it could be completed at this dosage. 

Charity is going to her Mum’s today.  This is good for both.  They need to spend time together.  I thought about going but to be honest, I really don’t need to and while I wouldn’t be in the way, I’m still there. 

My wife will want to make sure I have a cup of tea and so on.  I’m not a distraction (I hope!), but just let them focus on each other. 

Carer's  note: 

If it’s possible, try and have your loved one spend time away with family.  Just one night, or maybe 2. It is a welcome ‘distraction’. And, let’s be honest, as a carer, we need a break as well.  If only to sit and watch the match and just do that and nothing else.  It’s not selfish.  Take care of yourself too. 

September 13th 

Had a little to drink last night.  Just felt it was a harmless time since I was on my own.  Charity has a sixth sense though.  But I managed (I think) to pull it off.  Drink can be good for people like me that keep far too much inside.  I caught up with my kids and their respective fiancés.  I chatted with a good mate.  So, how can that be bad. 

And that’s the issue.  Drink can be good… but in excess, can be bad.  Last night wasn’t.  Keep it like that!  

Charity is doing OK.  Her throat is getting better.  I am certain her Mum is happy she is there.   

She (Mum) doesn’t say much.  But sometimes words do not need to be spoken.  Love does not require words.  It requires feeling, warmth, actions, touch, and simple eye contact. That is enough. 

September 14th 

On drink, I am going to keep it to a glass or two of wine when we go out for dinner and some cocktails by the pool when we go away on holiday. Seems reasonable? 

Charity coming home tonight.  Miss her terribly. As stated earlier, if this disease takes her from me, I need to be prepared.  The thing is…  I will miss her every single day.  There’s no getting away from that.  I need to learn how to cope.  MacMillan Cancer Centre will be helpful.  I will use them.  I cannot go through this on my own. People that do are just ignoring their feelings – and that is not helpful. 

I think continuing to work will probably be the best thing I can do.  But even that doesn’t last forever. 

When Charity is not here, I feel helpless.  I really need to address that. Professional help is required. Of course, these feelings are natural.  That doesn’t make it any easier. 

Charity is not home yet – she was baking a cake at her Mum’s.  I’m feeling very down at the moment.  I simply cannot live like this.  I have that ‘sinking’ feeling in my stomach, anxiety, nervous even.  No idea why. 

Why did this have to happen? Why! 

September 15th 

Charity back home last night.  I no longer feel anxious.  When she is not here, I start over-thinking things.  Not quite that the world is coming to an end type of thing, just that something bad is going to happen.  I feel that if I am not with her, something bad will happen. Of course, that’s ridiculous, but I can’t shake it.   

Ok, new day today.  Back to normal. 

September 17th 

We had a really lovely day yesterday (Saturday). Charity is now in love with Kimonos – for some reason.  There is a nice shop not too far from here where she had bought one before and we decided to go there, buy her a new one and get something to eat. 

We managed to get her a new Kimono then had dinner – which was surprisingly good!  We ordered far too much food, but it was all good.  Soup of the day, Prawns, Fillet Steak, Seafood Linguine, Apple tart, Ice cream… One of the best meals in a while.  It rivalled the meal we had on our anniversary in Mayfair – minus the service and one half of the price!  (And sparkling water for me.) 

Today, Charity was cooking.  She really does love to cook, and I maintain if she is doing that, she is happy and feeling well.  I get the bonus of eating what she cooks – and her family generally drop by to pick some stuff up.   

Speaking of which her son came by.  I greeted him said a few niceties.  All was good.  Maybe this is the beginning of the ice breaking and things perhaps not getting back to normal, but at least being on a level that is civil, respectful, and give Charity at least some of what she wants – and probably needs. 

It's not that I don’t care.  It’s just that Charity has my focus.  Maybe now we’re near the end of chemo, my outlook is softening on that front? 

So, a good weekend (and Rangers and Arsenal both won).  Not too many complaints. 

The week ahead is the usual “Chemo week”.  Blood work and Oncologist on Tuesday, infusion on Thursday, followed by a week of recuperating (although there is a CT scan the next Thursday). I’m hopeful Charity will be well enough to do that. 

We need to let the Dr know about the side-effects this time around and see if it will cause the chemo dosage to be reduced. Will it have a material affect either way?  Lower dosage means what to the cancer?  Same dosage means what to perhaps long-term side-effects.  These decisions are patently unfair.   

Welcome to the world of Chemotherapy. 

Almost forgot, we have dinner planned for this Wednesday at a nice restaurant to celebrate the end of Chemo.  While this is a milestone, it will also make you think. 

“OK, we’re at the end of this phase… Good!  But the cancer is not all gone… What now?  Surgery, yes, but the cancer even after that will not be gone. At least during Chemo, there’s stuff there addressing this”   

Happy it is at the end, but afraid of what is to come.  There is nothing actively killing it anymore if it is still there.  And I must face it, I’m 99% certain it will be. 

September 19th 

Off to see the Oncologist now.  There will be nothing new – just a discussion around the side-effects and whether the next dosage will be the same. 

After a discussion of Charity’s experience in this session, the Dr has indicated that the next dosage will be 75% of the current one.  She says that this will not have a material impact on the treatment since we are at the last stage.  However, it should benefit the side-effects.  Exactly how we saw it to be fair. 

The numbers from the blood work are all good.  The CA-125 number is now at 21 (down from 25).  Statistically, that is a decrease of some 16%.  Keep in mind this number was a massive 466 before treatment.  

If they can find a cure for the toxicity issues, then chemo surely in large doses – and for longer periods – will cure this horrible disease.  But... they have been trying that for how many years and how many £trillions?  Frustrating – since the chemo does work. 

Psychologist telephone call tomorrow.  Charity is very concerned about the surgery.  Hopefully she can get some reassurance from the Psychologist – or anything else that is on her mind.  I certainly do not know everything she is feeling. Maybe just as well?  But… I should. 

Patients note: 

Never sugar-coat things with the Doctors.  Always be honest, truthful – and above all, be prepared with questions.  It is too easy to get wrapped up in a discussion and forget important things.  

Make a list! 

September 20th 

Charity had a (scheduled) call from occupational health this morning.  I suppose it went “Ok” but Charity having to explain all of this again was very upsetting for her. 

Right now, she is on a (scheduled) call with the UCLH Psychologist.  Probably good timing.  She has been feeling very anxious about the surgery – and as I found out this morning, money as well. Luckily, money is the easiest thing to fix for her.  I will take over all the household payments.  But make no mistake, just having less coming in per month is a stressful place to be in.  Imagine, if we could not afford our expenses anymore? 

Companies also need to realise that they need to act promptly on requests (such as extended leave). Not doing so causes an unimaginable amount of stress.  Charity’s company seems to have the right processes in place – but very slow in acting.  They need to take it seriously.  They are dealing with lives here.  It’s a sad world we live in sometimes. 

Note: 

Talking about money is always hard – but very important.  You will need a modified budget during this time.  Get that done as quickly as possible – and plan for the worst case money-wise in order that you are prepared.  You don’t need added stress on top of what cancer itself brings. 

Cancer affects us in just about every way – including money. 

September 21st 

Today is the final session of chemo. But before I get to that. 

Carer's note: 

It is important that you make your loved one feel loved.  Every day, I tell my wife how much I love her, how she is my whole world, and caring for her is never an issue.  I also tell her how beautiful she is.  This is vital.  Someone going through chemo does not feel ‘beautiful’, but being reminded that you think he/she is re-enforces the fact you have always been there for the long haul. You are there through the difficult times.  And yes, you are in love. 

Do not under-estimate this.  And don’t just say the words.  Mean it. 

Back to chemo. 

After the session I asked Charity what her thoughts were.  They were very similar to mine.  When going through chemo, there is a schedule.  You are getting something that will kill cancer.  Something is happening. 

Now that it has ended – and there is still a large mass that will require surgery – it seems different. It’s not a case of “Hey, let’s celebrate! Chemo is over.” Quite the opposite. 

We learned from a Nurse that we know from MacMillan that the CT scan on the 28th might be one that 100% decides whether the surgery can go ahead.  What the fuck?  The surgeon seemed pretty certain it would.  Consent forms were signed, operating theatre time booked.  Hopefully the Nurse is just making conversation – generalities about the process.  Surely, there will be no issues.  If anything, the scan on the 28th must show that the mass is even less than what it was before. The Surgeon seemed so positive on a successful surgical outcome? 

Don’t do this to Charity – please.  Don’t do that to us! 

Off to Charity’s Mum’s until next Thursday evening.  We will leave Saturday.   

September 23rd 

We had a discussion this morning on whether I want to get buried with my wife. 

Be prepared for this type of discussion.  As dispiriting, difficult, awkward, and awful as these are, they are absolutely necessary. 

Charity’s daughter – my step-daughter – died of Covid.  I understand my wife wants to get buried with her.  I believe she should.  For me?  Just cremate me and I will have my ashes placed close to her.  That kind of thing.  At least she doesn’t have to worry about where her final resting place will be, which will be with her daughter.  Gives her peace of mind. 

The plan is though, get as healthy as can be, and live as good a life as possible, for as long as possible.  

Beautiful day here today in London.  Off to my mother-in-law’s for a few days.  It’s fine there.  There is an office upstairs I can work in – or simply go to – to browse the football and news etc.  I do like my own space from time to time. 

The chemo affects have started.  Seems to start in the knees now and will probably affect Charity’s legs.  Hopefully, it will not be long term damage and start to improve after a week or so. 

The biggest thing on her mind though is the surgery.  I asked Charity whether it was the actual procedure (this is a 5-hour operation), or the outcome.  It’s both, but the outcome I suspect is most pressing. Was all the cancer removed?  How about the ureters?  The nephrostomy?  There are a lot of questions that can only be answered on the day.   

And of course, the next scan.  What about the Supraclavicular lymph node?  Any sign the cancer is still there?  Of course, a biopsy can only tell, but it was a CT scan in the first place that put them onto that.  What I don’t want is the Dr to say “Well, it looks like…”  I want: “There is NO sign…” or “We DO see evidence…” 

Dr’s need to be forthright – like the Surgeon is – not some wishy-washy shite that some come out with. 

I’ll be honest… How hard can it be to be an Oncologist?  Not hard Imo. I know I’m being unkind perhaps, but we need and deserve answers – even if we don’t ask.  Maybe I’m just a little frustrated since I would definitely ask if it was me.  But it’s not, so I will respect that. 

On a more social note, Arsenal playing Spurs tomorrow.  The Emirates is just down the road from us, and my wife is an Arsenal supporter.  She can barely watch the TV when they play.  Just like me and The Rangers.  Terrible – but fun.  And we need that. 

Anyway, a little £5 on Arsenal to win.  I also bet £5 on Joe Joyce to win in boxing – his career is on the line – and Ireland (£5) to beat South Africa at the Rugby World cup. 

Doubt we can retire on the winnings – if we do in fact win! 

September 25th 

Here at Charity’s Mum’s. She has a nice house in a much quieter area.  Good for running and so on.  Charity is not feeling too bad.  She was very, very tired yesterday, but had a good sleep and reasonably well today.  The 25% reduction in the dosage must have kept the side effects under control. 

So, at the moment, just recover and look forward to the CT scan on Thursday.  Of course, we will get nervous for the appointment on October 3rd.  I do wonder what the Oncologist will say then.  This is all about the lymph node in my opinion.  I am as certain that I can be that the condition of the Uterine cancer is such that the surgery is relatively straight-forward.  My concern – and probably Charity’s -- is the Lymph node.  

An ongoing issue are the Nephrostomy tubes. I actually hate them.  Charity probably does too.  The surgery should get rid of these if not during that operation, then soon after.  They simply must go. 

If it was me, I’d have probably ripped them out by now.  Charity can pee by herself – has been able to for a few months.  Just remove them, and see?  I know that is not very scientific, but … if she can pee, then why are they there?  Beats me.   

September 26th 

Nothing much going on right now.  Cancer is always a waiting game – not just for the obvious (has it spread), but just waiting for the next test, the next scan.  Patience is required! 

Charity is probably about the same as the last session – and this was with a 25% reduction in dosage.  It certainly seems like the right move. 

Patients note: 

When meeting with the Oncologist – or any Doctor -- be very, very specific and above all open.  Never try and disguise how you are feeling.  Side effects can be serious.  They need to be addressed.  Always be prepared when attending an appointment “This feels like this…” or “The tips of my fingers are numb”.  Doctors will adjust dosages based on your input.  It’s important. 

September 27th 

Charity feeling the numbness that comes with the chemo side-effects.  It happens in her fingers, legs, and feet.  It’s “Peripheral Neuropathy” and needs to be watched.  It is why she had a decreased dosage last session. 

This is the one thing that can become permanent. I know that chemo is so much more important, but there is also a balance to be had. 

We are still at her Mum’s house.  But I have to ask, what is the point?  Charity is basically in bed most of the time, and her Mum really doesn’t do anything to take care of her other than make some of her favourite food.  Not that I would expect her to “really” take care of her.  

I suppose it’s just being close to each other and that’s ok.  

I am the type of person that likes – and perhaps needs – routine. I’m not at my best when I’m not in my routine.  Maybe that’s just getting to me a bit.  It’s all good.  Just a little ‘off’. 

We have the scan tomorrow.  It better include the problem Lymph node.  I will ask beforehand if it does.  We know what is going on in the uterus to a reasonable extent.  It’s the Lymph node issue as I keep going on about.  

Note: 

Get used to waiting – for everything.  Patience is also the key to dealing with this. 

September 28th 

CT scan today. I did send a message yesterday to the Oncologist asking if it was part of the scan. And… amazing, I received a response.  “Yes, it will!”   

I must admit, UCLH does things well.  

We will go back home tonight.  The Nurse comes on Fridays to change the Nephrostomy dressings.  Hopefully, I can get out for a nice long run Saturday morning – weather allowing. 

Other than this, not much to update.  As stated above, waiting is the name of the game. 

We are now waiting for 1) These scan results on October 3rd, 2) Surgery on October 12th 3) The results of the surgery. 4) Getting on with living. 

September 29th 

We are back home now. The scan yesterday was only about 5 minutes.  4 hours out of the house for a minute scan!  That’s the way it is.  It’s a nice diversion in some sense.  Sounds crazy, but getting out of the house and doing something positive is good.  There is nothing worse than just sitting around and waiting.   

Note: 

Look forward to these “outings”.  Make the most of them.  Have a coffee, walk slowly, and enjoy life.  It’s the simple things in life that count – simple things are somewhat more meaningful in my opinion.  Bills, mortgages, work?  Forget those. There’s nothing better than walking hand in hand with the one you love.  Enjoy it – and appreciate it. 

October 2023 

October 1st 

Well, yet another month gone. We had a lovely lunch today. The food wasn't spectacular, but we really enjoyed just being out and doing normal things.  

Charity looked amazing.  No hair of course, that was lost right after the first chemo session.  She was quite upset by that, and it took time to “adjust”.  It’s a visual of what has happened.  It certainly is not something to feel ashamed or embarrassed about.  I look at it as a reminder that there is a fight going on, and Charity is giving this the best fight she can. 

We enjoy each other’s company.  Of course, we’re married and in love, but this has made us realise that we don’t live forever, and we better get on with loving each other and all the things that are important. We don’t really speak about this, but I don’t think we have to. 

Today in the restaurant, I noticed a yellowish tinge to Charity’s skin tone.  I immediately thought that the cancer has now spread to her liver.  Then I realised there was a support column right behind her that was painted off-yellow.  It was just that column reflecting on her face.  Hopefully that is not a sign.  

Cancer is never far away from your mind – ever. 

Tuesday is coming fast.  This is when we get the results of the last CT scan.  I’m getting nervous and a little afraid.  We have been talking about the surgery, getting the Nephrostomy tubes out, getting stronger, going on holiday, swimming...  If this is bad news, then our future will be defined less than 48 hours from now.  I might be over-thinking this of course as I usually do – but I’m more nervous than at any other time.  Even the midpoint scan – while nerve racking – for some reason, didn’t feel like this. 

Monday tomorrow and work is busy.  Right now, I’m grateful for that. Tuesday will get here soon enough. 

October 3rd 

We have the scan results today. I’m nervous but not too much right now.  I will do my usual thing of seeing if the Dr looks at us first.  Remember, the jury and the condemned.  My mind is starting to race I suppose.  One thing you learn throughout this is to accept that your mind will race, and basically just be “all over the place”.  I’ve learnt all of that is normal. 

I think I’d rather get back to a proper “normal” though. 

I’m not going to think about this right now and just focus on work.  We don’t have to leave for a few hours yet.   

But first, I will write down what I think will be the scan outcome. 

No evidence of Cancer in the Supraclavicular lymph node or anywhere else (other than her uterus of course).  I’m not just “saying” this. I believe Charity has had such a good response – and combined with a favourable CA125 number – how can it be anything but that? 

Back now. The Dr was of course late – she said she needed to request the scan. That meant a 1-hour delay. When waiting for results like these, the worst thing that can happen is longish delays.  The mind starts imagining all sorts of things – and mostly bad.  Charity is the same.  We talked about this while waiting. 

We were called and went to the office.  The Dr said – while looking at her screen -- “The scan looks good”.  Charity asked about the Lymph node and the answer came back that “There is no sign of anything there” - or words to that effect.   

While I thought this would be the case, hearing this said in words brought about an entirely more profound feeling than I could imagine.  I simply could not articulate how happy I was to my wife. She cried.  I had tears in my eyes as well.  Really, the emotion took me by surprise. 

I asked about Liver, Lungs and so on – all clear was the response. 

October 3rd is a good day. 

We celebrated a little by going for lunch – no drinks.  We came home right after.  A huge sense of relief and actual happiness for once in the last 5 months. 

Still – is it there and just not showing up on a CT scan?  Cancer is all-consuming.  It never leaves your mind. 

The next step now – and hopefully last – is the surgery next Thursday.  The tumour in Charity’s uterus has not really shrunk much since the last scan. It’s now down to the skills of the surgeon to remove this.  How much she can remove might very well come down to her actual skill, her risk aversion and other things I know nothing about.  I would assume that leaving just 1 cancer cell behind is one too much. 

Still though, we’ll enjoy today, and we can look forward a little with some hope.  

It’s nice to see my wife smile again like she used to. 

October 4th 

We are in a good place right now.  Weather this weekend will even co-operate to seems.  Up to 25/26 which is unusual – but the climate has changed. There is no doubt about that.  Even here in the UK, torrential rainstorms, flooding and so on.  Now I’m sure it has all happened in the past.  It just seems to happen with increasing regularity.  And our PM wants to roll back everything “green” in the search for votes.  I’m not exactly a “tree hugger”, but the climate crisis needs strong leadership – and more importantly, strong actions.  The problem is countries like China and India will not get on board. 

We need better drugs 

Which brings me to this point.  When Covid started, the world pulled together, worked together to find a vaccine.  It was important.  It was a potential existential threat. And?  We succeeded.  We spent the money it took, we cut the red tape, and stopped the bullshit politics.  We succeeded.  We can do this again for climate change. And the point I am getting to... We can do this for Cancer. 

Now, there are plenty of theories out there about why we haven’t found a vaccine, or cure, or better treatment.  The big Pharma companies wanting Cancer to be simply a chronic condition so they can rake in the money from a monthly prescription for life.  That’s a popular one of course.  But I do have to think.  Why is my wife being treated with drugs that were patented over 50 years ago.  Yes, that is correct. FIFTY years ago.  Now, these kill cancer – there is no doubt about it.  But they will also kill the patient.  You simply cannot stay on these for an extended period. 

The Cancer society's love to say that survival rates have improved.  This is true.  But is it because of better imaging, earlier diagnosis, more awareness on our part?  I think so. 

The bitter reality is though, killing cancer remains a violent, horrendous experience.  There is no dressing it up any other way. 

We need better drugs – end of. 

October 5th 

The good news is that all seems to be in the works for next Thursday’s op.  The op is called "total abdominal hysterectomy with bilateral salpingo-oophorectomy”.  In other words: 

“Hysterectomy is a surgery to remove the uterus and cervix. Abdominal is the surgical technique that will be used. This means the surgery will be done through an incision in your abdomen. A bilateral salpingo-oophorectomy is surgery to remove both ovaries and fallopian tubes.”  

I said to my wife that I am looking upon this as an engineering exercise.  While our Cancer drugs are left wanting, we’re actually very good at this type of thing.  I am quite confident that the surgery will be fine (from a technical perspective).  I know it’s easy for me to say.   

The questions are:  How much cancer managed to be removed?  How much remains? And what does that mean? 

I’ve made up my mind that I am going to ask the surgeon point blank.  This time, I need to know what the real state of play is.  They must know the answers now.  Chemo is done, surgery will be done.  We know what is left, what does it mean? 

This weekend, the weather will be like summer. 25 degrees or so.  We’re going to dig out our picnic basket and go to a nice park.  Not sure what we’ll pack it with.  I’m thinking smoked salmon, baguette, real butter, fresh fruit, sparkling water and maybe some cake?  Not sure – and probably doesn’t matter too much. but it will be nice to do this. 

October 6th 

The district nurse was here for the Nephrostomy change.  This should be the last time! All going as planned; the surgery next week should include this.  If not, then hopefully soon after.  It would be a shame to not have this done during the Op.  Would make sense to me. 

I get the feeling that many Drs just go by the book – and don’t really pay attention to individual patients. 

I just feel that the Urology Drs will say leave them “for now” with no reasonable explanation as to why. They should have taken the damn things out months ago. All in my opinion of course, but can we please have some original thinking?  Address the patient in front of you, not just do what some guideline in a book says. 

These things are frustrating. 

October 8th 

Charity thinking a lot about the upcoming operation.  I asked her if it was just about the Op, or the result, or...  She was non-committal, but I suspect right now it is 80% the Op and 20% the result. 

We need to pack for her.  The first night – or two – she will be in ICU (or ECU).  Ecu is an enhanced care unit.  Sort of ICU-Lite.  She won’t need a lot of things to take with her at first – so I’ll bring her extra things after a day or 2.   

We’re not doing too much right now.  Just relaxing and waiting.  We will try and get out for a decent walk every day though so Charity can be as strong as possible for this operation.  It is a really major Op.   

And while the days of having children are gone, I imagine for a woman, getting her womb removed, must be an emotional experience – no matter what age. 

It’s about 9:30pm now.  Off to the hospital in the morning for the “pre-assessment”, then Charity off to her Mum’s overnight.  I need to work and have a Covid jab at 6pm. I have a feeling of dread right now.  I'm back to feeling that if the worst happens, I will be absolutely distraught. 

Here’s why I am thinking this.  The operation will be as successful as it can be.  But there will be disease left.  There simply must be.  Chemo is finished, therefore, the Cancer will clearly grow and spread.  How long will it take then to reach vital organs?  A few months?  No one knows, but I do know this.  When it starts to spread, it’s unstoppable. 

Fuck cancer. 

October 10th 

We had the pre-assessment yesterday.  Basically, it’s a meeting with the Anaesthesiologist to answer questions about how you’re feeling, any changes, breathlessness... that sort of thing.  All normal.  So, all good to go for Thursday.  Charity is first on the list – but could still have delays because of lack of beds in ICU, lack of this, lack of that.  But should start basically on time. That would mean an 8-8:30am start? Then the operation takes about 5-6 hours or so.  Give 30 mins to 1 hour in recovery and all done by 14:00-15:30? 

Then up to ICU and I’ll get to see her.  You are only allowed 1 visitor per patient in ICU.  That makes sense. 

I’ve made up my mind about asking the Surgeon what her prognosis is.  I am definitely going to ask. Not knowing is bothering me more than what knowing would.  I’ve reached that point. 

We are still at Charity’s Mum’s house (I decided to come).  Charity is resting a lot – when I think she should be trying to walk a bit.  But... she knows her body best of course.   

This operation is truly major surgery.  I know she is strong enough physically.  I wonder about her emotional state though – since she tries to put on a brave face. 

Patient’s Note 

I know we all like to be strong – and get on with things.  People looking after you and who love you are also here for you when you’re not feeling so strong.  That is why we are here.  Lean on us. 

October 11th 

It’s 4:41am. The surgery is tomorrow, and my mind is racing.  So many questions running through my head.  The problem is that there can be multiple outcomes.  It’s not clear cut – and the surgeon said she won’t even know the real state of play until she sees for herself.  Remember, she said the scans are not always accurate. 

My current thinking (and it could change), is that she will remove most of the “mass”, the ureters will be “ok”, but there will be disease left behind.  Right now, I see that outcome as the worst case.  The best case?  She removes everything that she can see. 

I’m not usually this negative – mostly realistic I suppose – but the closer all of this gets, the harder it is to be positive.  

I’ll need to ensure I try and provide some positive energy today for Charity. 

October 12th 

Surgery today!  We arrived in plenty of time (6:45am). As I’ve mentioned a few times, always be prepared for delays.  And today is no different. 

Charity was first on the list but has been bumped to second because another patient requires a more complex anaesthesia.  Oh well.  So, we’re in a nice room where we just wait.   

We did meet with the surgeon, and she seemed quite positive about the operation.  She mentioned that the Nephrostomy tubes will be removed (hopefully).  She also mentioned that this Op does nothing about the prognosis.  That’s a bit of a blow.  We know this... but hearing it now?  I need to get her actual thoughts on that. 

She will call me when the Op is over.  I will see how to phrase the question that I need an answer to in the meantime. 

Well, still waiting.  We were told perhaps 12, perhaps 2.  Some 5-7 hours after arriving 🙁 Remember, be patient!   

Charity is having a nap.  She must be tired.  She probably has not slept well in a very long time. 

Hopefully after today, we’ll get some good news, and the damn tubes are gone.  I cannot emphasise enough what an issue they are. 

Back to waiting... 

They came for Charity around 2:30pm.  It’s already been a long day.  I am in the hospital canteen waiting.   

Earlier, I posted her Power of Attorney and Will to her solicitors that she put together the other day.  Now, we should all have these, no matter our age, or our physical condition.  But that must have taken some balls.  Seriously. I imagine when you have active cancer, putting together something like that is almost an admission that you will not be here very much longer (even if that's not the case). I told her she was brave – which she undoubtedly is.  Still though... 

I forgot my phone charger – of all days.  But I'm not using my phone very much and it’s at 66% so I should be OK.  The surgeon will call me on this phone when she is done. 

Right now, I am terrified.  I don’t care how positive the surgeon was this morning – Cancer is cruel, unfair and takes your hope away when you get a mere sniff of it. 

I will phrase my question(s) like this (after I get some news...) “And what does that mean long term?” And... “Can you be more specific?”. 

Let’s see how that goes? 

Back to waiting... 

October 13th 

A result! 

The surgeon called me around 7:20pm.  She said she managed to get everything she wanted, and the operation went very well.  I asked her how much cancer was left behind.  She said none.  I couldn’t believe that.  None. She said none that is visible and none on the scans. 

What a result! 

Charity also has stents in her ureters – but the Nephrostomies are still there.  Hopefully, if all goes well, the tubes get removed on Monday. 

So where do we stand now? 

I’m not going to pretend Charity is cancer free.  I somehow think that is not possible.  It’s just not showing up.  Let’s hope it stays that way.  Once the tubes are out – and the stents come out – this phase is completely closed. 

There are now follow-ups and the CA-125 blood tests.  That will be a concern if it starts to rise.  But we’ll deal with that when and if it happens. 

This journey of ours will never be over.  October 12th was a very good day indeed. 

October 14th 

I have to say, my wife’s power of recovery is out of this world.  She is lucky.  We went for a small walk around the hospital floor today and she coped well with that. 

She even did the exercises that are on the wall!  Simple stuff.  Hold the bar and raised your feet.  But she did it. 

Here’s the plan for the Nephrostomy. 

Tomorrow, they 'clamp' the tubes.  This means that the flow of urine will follow its natural path 

They monitor how that goes... then Monday (or Tuesday), they remove the tubes. Completely 

After 4-6 weeks, she has a scan to ensure everything is ok. If so, they remove the stents inside her ureters – meaning she is completely on her own at that point 

4-6 weeks after that, they take another look to ensure everything is good. 

This sounds like a reasonable and responsible way forward with this part of things 

There is no point wondering how long this will last.  Just live, love and enjoy everything.  Now that I can see some type of end to this, I can allow myself – and I’m sure Charity can as well – a glimpse at a future. 

Very happy about things right now.  And I am going to investigate a health club membership – with a pool. We can now think about this – amazing! 

October 15th 

The nurse clamped her Nephrostomies this morning.  Just a simple clamp.  I thought it would be much more scientific! I will go to the hospital later and see the result – but it sounds like urine is going via the catheter.  This means of course, it is flowing down through her ureters.  So, all good so far.   

I am going to visit at 2pm and can’t stay too long today.  Work stuff.  But her Mum and probably some others will be there. 

I’m actually getting excited about the future.  It’s hard to live one day at a time.  I know we should.  But I don’t see a lot of fun in that.  I like to plan things, look ahead and so on. 

Back from the Hospital.  It certainly looks like the urine is flowing freely. This of course, is good news.  It means the kidneys are fine (we knew that), but more importantly, the ureters which were ‘corrupted’ by disease are working fine.  As I understand it, there was disease around them.  Now?  Perfect. Well, if there is urine flowing through them, good enough! 

We are not sure when the tubes will be removed.  Maybe they want to measure how much urine is flowing first – probably – then make that decision.  I think it’s pretty simple.  Ureters are fine, remove the tubes.  End of. 

This will be an immediate life changing situation. I have gone on a bit about how these are limiting in every way.  We generally hold hands at night.  We are very much in love. I simply cannot get close to my wife because I do not want to lie on her Nephrotomy bags... so although this kind of thing is far down the list as it were, being close is important.  I can now look forward to holding my wife properly, loving her and just making sure she knows she’s loved.  I know she does...  But a simple touch is incredibly important.  And we are going to get back to that very soon. Amazing! 

I miss her. 

I have been thinking.  Why did this of most beautiful woman marry me?  She took a chance.  I suppose I did too.  I have looked for her my whole life – which is why I was never happy.  I am now.  Marrying Charity changed me.  It was physical.  I cannot and will not lose her. 

October 18th 

The tubes came out yesterday!  Charity can pee by herself.  But it appears there is a slight issue in that her bladder is not working as well as it should?  I think that was the message this morning.  She hasn’t really used it in 5-6 months, so perhaps it just needs some practice (seriously).  They might send her home with a small catheter that should help this situation.  She needs a break. 

I could tell she’s really disappointed.  But hopefully just a small blip here and who knows, she might not need a catheter at all.  Let’s hope! 

October 19th 

Charity now home -- without a catheter or anything else attached to her.  So now, we need to ensure she takes her medication (including a week's worth of blood thinning injections). 

Feeling a little down at the moment.  I have a feeling that work is about to have a re-organisation.  If so, hopefully I will not be affected.  Let’s face it, it would be an absolutely shit thing for them to do to me.  My wife gets cancer, loses 80% of her income, I work my arse off and then get rid of me?  Surely not?  I am not sure why I am feeling this way. 

Perhaps now that this phase of things is over, it’s kind of a natural “let down”.  A let down because of the adrenaline you must carry throughout?  For example, when you get to the end of something.  It just feels empty. 

The next phase is her recovery and try to keep our minds off it. 

My predictions about timelines were accurate.  Recover by the end of November, then gain more strength. Back to work in January?  That would be a result. 

October 20th 

Charity still very tired and I suspect weak.  It was a major operation and the characteristics of it are such that recovery is not quick.  Given this is the second time they have cut through the same muscles, perhaps the recovery is elongated?  Just a guess. 

Charity’s ex sister-in-law is here having a chat.  Charity was sleeping before.  I said to her that if she isn’t feeling up to visitors, just tell them.  They will understand.  I’m not pleased about visits right now.  Give her time to recover.  That’s all. 

My instinct was correct about work.  There is an executive meeting next week in London to map out the future – strategy and the like. It’s time for an upgrade on the overall architecture of the software we write and so on.  I’m not sure what it means for me, but these people are relatively incompetent.  And that makes them dangerous.  If they knew how to run a Software company, I’d feel safer.  More on that as it comes.  But right now, I think I can easily have another year.  That is the minimum I need. 

October 21st 

Going to make a good breakfast today for Charity.  Sausages, Eggs, Tomatoes (with Olive oil and salt on them, just how she likes them), Orange juice and coffee.  Brought on a lovely tray of course! 

She seems to be a bit better.  Pains here and there, fingers, feet still tingling/numb.  But... If that is the price of surviving this for a few years – or even longer... So be it.  Anyone would take that scenario. 

Back in April, she had a few days to live because of the Kidney failure.  Without Chemo?  She would probably not be here. 

And now?  No visible Cancer and on the mend.  (Inside me, I still ‘know’ it’s there. But... let’s get on with life.) 

Good day today.  Charity resting most of the time of course, but we did get to go out for a walk.  She sounds much, much better.  Her voice is stronger, and you can just tell with someone when they are up or down. 

So far so good! 

Tomorrow?  No plans.  More rest.  I do expect us to do something next weekend though.  Not sure what, but I desperately want life to start having a semblance of normal.  I’m sure my wife does as well. 

October 23rd 

Back to the hospital today for blood work.  This is not Cancer related – but to check on her after removal of the Nephrostomy removal. 

She can wee – but has difficulty emptying her bladder completely.  She was given a few ideas on what to do by a Nurse who called from UCLH.  So, we’ll see how that goes.  She’s in good spirits though – and improving daily. Slight, but improving.  At least, it is in the right direction. 

October 25th 

Charity looking much stronger -- even her movements are much better.  I tell you; she has world class recovery skills. I researched the stent/urine/wee much more issue.  It seems that the stents can irritate the bladder, which causes it to ‘spasm’ which makes her feel like she must wee.  So, all in all, an expected phenomenon? 

The next step is her Kidney scan – that will be all normal.  Then surely blood work early December and a follow up with the Oncologist.  That could be telling.  My mind is already going in a negative direction just thinking about it.  What if the CA-125 number is > 35?  Indeed, what if.  If so, then the Cancer is somewhere “unseen” and life will be shorter than we both hoped.  For some reason, I can’t think of a positive outcome.  I hate this. 

October 28th 

Nice day today.  Charity did too much by baking a cake, making soup and some other things.  I went for a run and (pre-planned) bought her a diamond necklace – single solitaire pendant kind of thing.  She said she wanted something to mark the end of this phase of things.  Something she would appreciate.  Well, diamonds always work! 

I also wrote her a letter to accompany it.  She was quite moved and cried.  For the record, I meant every single word of this.  Here is the letter. 

October 28th, 2023  

My beloved Charity,  

You started making a difference in this world the day you were born. You are a remarkable woman. Strong, loving, gentle, thoughtful, caring – and any other word like these that anyone can think of.  

Throughout this period of your life, you have shown such resilience – never getting down, seeing all challenges head-on – and dealing with it. This rubs off on everyone. Your never-ending optimism and positive vibes flow from your very soul. You genuinely care more about others than yourself it seems – even during this trying time.  

We learn lessons about ourselves when these challenges are thrown our way. Your response has been as I would have expected. You – in your own way – have supported everyone, me included. How can I ever thank you for the strength you have shown?  

Taking care of you has been my honour – and indeed my privilege. I love you more today than ever – more than I ever thought imaginable.  

We have a long way to go in this life. And I look forward to spending each and every one of them with you my darling wife.  

  
Love always,  

James  

xxxxoooo 

I love her.  She is amazing.  Even through all of this, she has really been incredible. 

A good day today. 

October 30th 

I’ve been taking Charity’s blood pressure since she left hospital.  She has been on medication since she first was admitted back in April 30/May 1st for blood pressure.  The Kidneys are responsible for your blood pressure – or have a very active role in it.   

Because of the original issue (Kidney failure due to the ‘mass’), Charity’s BP was through the roof.  Because of this, they put her on medication.  However, she never needed medication before.  Now that her Kidneys are fine, she probably doesn’t need the medication.  Her BP readings seem to bear that out.   

Note: 

One thing I believe in is that you should not take medication just “because”.  Take it for a reason. And right now, there is no evidence to suggest she needs it.  Doctors tend to just look at a flowchart of some kind and say...  “Yes, this is the tablet you need.”   

Always challenge them. And have evidence – if possible – to support your position.  Make them think a bit. 

November 2023 

November 1st 

Although Charity’s power of recovery is remarkable, this time around is a little slower.  It’s only been about 3 weeks since her surgery.  Her wee is quite ‘pink’.   I suspect it’s irritation from the stents and she has been told not to worry.  To me, this is just a side-effect – nothing to do with Cancer.  But the mind always races. 

There’s not much new at this point.  Recovery is the main item on the agenda as it were.  There is a scan next Thursday on her Kidneys – and hopefully get a date for the stents to be removed.  They make her wee almost constantly, which is a bad thing for sleeping – and as said, probably irritation somewhere causing this pinkish urine. 

This said, we are in a much, much better place now than previous.  And for that, we are both thankful. 

November 2nd 

Busy at work today.  Later in the afternoon, I didn’t hear Charity call me.  Apparently, her mother was at the gate needing it to be opened.  I went downstairs and opened the gate and forgot to get the stuff she brought with her.  Like I said, I was busy.  And when you develop software, you get very immersed in it.  Interruptions can be very bad for momentum. 

After a dirty look from Charity -- which pissed me off – I came back upstairs and decided to go to the pub.  I mean, why not? 

I took Charity’s letter that needed to be posted and left.  I got to the Post Office, did that and when I left, decided the pub was a bad idea.  So, I just came home. 

It probably would have been a bad idea. I am sure I will be glad of that decision tomorrow. 

The thing is though, I really feel like having a drink.  No reason to – never is – but I just feel like I do.   

I won’t. 

Charity’s urine has returned to a clear(ish) state.  It does seem this is entirely related to the stents.  Doing more harm than good if you ask me.  Anyway, they should be gone soon enough. 

November 3rd 

I knew I would be grateful I didn’t drink last night.  I am.  There was a 30-minute period though when it was touch and go. 

As a carer, I think (know?) things build up we’re not even aware of.  I get up in the morning and start work in the bedroom next door.  I respond to requests from my wife throughout the day – no complaints there – stop work, eat sleep and it’s the same the next day.  If I miss a ‘request’ (remember my hearing is not the best), and I get some grief over it – ok it was just a little – I start to feel like I am taken for granted. Seriously. 

I feel like I’m just the hired help.  I know that’s not the case, but when you feel something, it becomes your reality.  Right now?  I just feel like saying fuck this and I’m off to Glasgow for a while.  Not in a good place. 

Charity came in to see me (I started work early).  She apologised.  Not sure for what.  Maybe she knows I am kind of sensitive to this stuff right now.  I did tell her I felt like the hired help etc. I need to tell the truth. Also, I told her I nearly went to the pub – and it would have been for more than one or two.  

She said she doesn't want us to waste time.  By that she means being cold with each other (that never lasts anyway).  I said there’s plenty of time.  But I wonder what she’s thinking? 

So now?  In a better place.  Still pissed off.  Just better. 

November 4th 

Charity still having some pains from her operation.  All normal I suppose.  She has a Kidney scan on Tuesday now. We need to find out when the stents will get removed.  Wonder if there is a YouTube video that shows how?  Just kidding of course.  But getting to that point. 

Raining, dark and cold today so not much on.  I will run down to the Houses of Parliament though.  That’s about 8KM from here.  Tube back! 

So, really, just in recovery mode – probably the rest of the month.  Charity needs to start some type of regular exercise though.  Walking is fine, but starting to become time to step it up a bit?  Worth a discussion. 

November 8th 

Charity had a scan on her Kidneys yesterday.  They injected her with dye, then she had to go to the toilet, then wait, then another scan.  Reasonably certain the dye is to see how well her Kidneys are working – how efficient they are. 

I can be as certain as I can be, that there are no issues there. 

A nice lady we met when Charity was in hospital in May sent Charity a message yesterday (they keep in touch).  She was anxious about some blood work that came in.  I’m not sure what type of cancer she had, but she also had a radical hysterectomy.  She is about 4-6 weeks ‘ahead’ of Charity.  As it turned out, she has a lymph node that is enlarged and needs a biopsy.  If it’s cancer (certainly my thinking), then radiation therapy will be prescribed.   

Is this what is in store for Charity?  

I know everyone is different etc.  But as I said before, every little thing just points to Cancer – and the worst scenario. Living with Cancer is difficult.  It never leaves, never takes a holiday, never really lets you get on with life.  Well, you can, but let’s be honest.  It is always in the back of your mind.  Anyone that says otherwise, either doesn’t care about living, or just in denial. 

The surgeon had a telephone appointment with Charity today. 

Note:  

Always prepare a list of questions in advance.  That way you don’t forget anything. 

There were no surprises.  The stent impact on her Kidney and Bladder causes her wee to be pink/darkish.  We knew this – but it was good to confirm with her.  She will follow up with the Urologist to get these removed. The surgeon also said that “right now”, she is fine. OK we knew that too but also good to hear. 

She mentioned that the Cancer that was in her Lymph node was the serous strain – where in her uterus it was a different strain?  I really didn’t catch all the details – but certainly one to follow up with when we meet the Oncologist again on December 12th. 

Other things of note:  It’s fine to travel, have a bath and make love.  All less important than ensuring Charity is 100% healthy, but hey, important in their own way I suppose. 

The surgeon did say that it was still early days in her recovery and any pains she feels are OK.  Important that the bladder and bowel are working properly.  Other things will take care of themselves. 

So, all good news today.  

November 12th 

Nice day yesterday.  We went out for a “coffee” early in the morning.  It was sunny, cold, but nice. 

I went for a long run down to Piccadilly Circus.  Did well.  Fitness must be improving! 

In the afternoon, we were watching football.  I made some jokes about the “England Captain” -- Charity can’t stand Harry Kane. Anyway, she asked why I wanted to upset her?  After asking her several times “Did I really upset you with that?”  She responded yes.  Anyway, that pissed me off. It was a joke!  I just went upstairs and started to feel very depressed.  Even angry.  It’s the same feeling that I have when I drink far too much.  Something just touches a nerve, and it brings me down.  Certainly Charity’s “upset” stuff – which was also a joke – should not do that to me. 

Very strange.  I’m not in a good place at the moment.  But at least I know I won’t drink because of it.  That is an improvement?   

I’m just not sure why I feel like this?  Perhaps under-appreciated?  Not sure that’s it though. Life is boring?  It’s certainly not like it used to be.  We didn’t go out that much – but it sure as hell felt different. 

I haven’t seen my kids in a long time – and XMAS is approaching.  Stuff just stays inside of you – waiting.  Waiting for a trigger that has been pulled.  Then it comes to get you. 

I might go to the Cenotaph today and pay my respects.  It might bring things back into perspective because right now, life fucking sucks. 

November 16th 

Not much to report.  Charity making improvements – albeit slow.  But improvements are important! 

She had a call today from the Psychologist.  That went well and she is in a much better emotional place now than before.  Basically, just feeling more positive. 

I am too to be honest.  But – yes, there’s always a but – the next face-to-face appointment is December 12th with the Oncologist.  There would be blood work ahead of this and I can imagine a CA-125 test with it.  That will be nerve wracking. What if the number has gone up?  What if it’s over 35?  What if...? 

It’s 4 weeks away or so, and already starting to think about this... in a negative way.  This is what cancer does.  It never leaves – in many ways, it’s there forever. 

November 17th 

Charity was chatting with her GP this morning about her blood pressure.  Remember what I said about having evidence?  Well, it came in handy.  The GP said there was no need to take it – given the numbers that were presented.  Good!  If we didn’t have the numbers, it would be another prescription. 

Note:  

Watching dramas on TV is a great way to spend the time.  When your loved one isn’t feeling particularly great or energetic, it can pass the time – but also gives you something a little different to focus on.  It’s something different to discuss and look forward to. 

Far too often, we find ourselves immersed in everything Cancer.  That is not good. Try it – there are plenty of dramas available in the UK on BBC/ITV Channel 4 and so on. 

November 19th 

Went shopping yesterday.  It was a bit much for Charity – although the walking must have done her some good?  She basically hasn’t walked for 7 months.  At least not at a decent level. 

She bought some new trousers; a skirt and we ordered a handbag (Kurt Geiger) that I picked up on Oxford Street today.  Made her very happy! 

It’s only money – and to see her smile is worth every penny! 

Note: 

Remember these are the most important days of your life.  Every day is!  Spending a little won't hurt.  It’s not material things that make us happy.  It’s love and thoughtfulness. 

November 28th 

It was my Mother’s birthday yesterday.  She also died of Cancer.  Certainly, she had a decent innings, but another statistic because of Cancer.   

I’m really getting tired of it. As I have said: “Fuck Cancer!”.  And I mean that 100%. 

Charity Is having her stents removed this Friday.  Good!  Shouldn’t have them in the first place.  In my opinion of course.  I still believe Doctors just look at their “manual” and do what it says.  OK, nothing wrong with that, but it is not a case-by-case basis. 

These stents are causing irritation and bleeding.  I am very hopeful that once removed, that there is an improvement.   

I am a little concerned that it seems to be taking some time to get energy levels back.  I am sure this is normal given the chemo – but I just thought it would be quicker. 

Of course, I want life to be back to normal, and am impatient by nature. Things are going in the right direction of course.  But as soon as I say that to myself, I wonder what the CA-125 number is? 

Anyway, life is just continuing. Work, Charity doing some baking/cooking when she feels up to it and so on.  Pretty mundane to be honest.  Well, I suppose that is far, far better than surgery, chemo etc! 

December 2023 

December 1st 

December now.  Back when this started – and I’ll be honest – I didn’t give Charity more than a 50% chance of surviving this year.  Does this mean the Cancer is not as aggressive as the Drs think?  Remember, they just go by their “manual” – not each case on its own merits imo. 

But I must admit that being (visibly) “Cancer-Free” is quite a result. 

The stents in Charity’s ureters were removed today. Took less than a few minutes. A little discomfort over the next day or two and that’s that done with.  Just the Port to go on December 14th.  Then...monitoring. 

Before that though, the first post Chemo/Surgical check up with the Oncologist on December 12th.  I am desperate to see the CA-125 number. Pre-surgery it was down to 21.  After the removal of a significant tumour, should it now be down to < 10?  Even less?  Or 0 if there is no cancer? 

Now, I doubt it is 100% accurate but it does seem to be an accurate gauge so far.  Therefore, this is an important barometer. 

I’m back to feeling very ‘blah’ today.  Maybe all this is having a small toll on me as well.  I want to go to Glasgow for a few days post XMAS-day.  See my sister, Russell and just escape Cancer for a few days.  Of course, my wife can’t escape it so is it unfair for me to want to?  At least I can. 

There would be those that would think it was selfish of me to think that way – but you know what?  They are not in my position, so fuck them. 

See?  Said I was feeling “blah”. 

December 3rd 

Cold.  That’s all.  Strange it feels cold to me since I lived in Canada for many years and managed to survive endless winters with ‘real’ cold.  Proper cold.  -20c blizzard cold.  Un-survivable cold.  Yet, 3 degrees in London and it’s worse.  I never did say the world makes sense. 

This song by Sting has been going through the mind.  Maybe the world doesn’t make sense... But this song does.  “If I ever lose my faith in you” 

First verse 

You could say I lost my faith in science and progress 
You could say I lost my belief in the holy Church 
You could say I lost my sense of direction 
You could say all of this and worse, but 
If I ever lose my faith in you 
There'd be nothing left for me to do 

Quite true.  These words get to the core of why I love Charity so much.  There’s more of course... but this seems to be a very good fit. 

Quiet Sunday morning.   Overslept.  I ran from here to Paddington station yesterday – must be reasonably fit now – so slept well.  Not much to do today.  Stent removal side-effects were almost nil.  A little discomfort Friday night but nothing Paracetamol could not address. A little stinging at first but now all gone.  100% success.  I am a firm believer that these stents were more of a discomfort than they were actually worth.  

December 9th 

Charity feeling a lot better.  More energy – even putting her clothes away!  The stents were probably causing more issues than they were solving imo. Just seems more than just a coincidence that they get removed, and her recovery starts to speed up? 

Didn’t need them anyway. 

We’re going to a hotel today (Saturday).  Just to spend the night and chill.  Charity has not had a bath since April (of course she has had showers etc!).  So, I thought a nice evening at a beautiful hotel (St Pancras Renaiisance) will fit the bill – with a nice bathroom!  It’s nice to live in London. 

Nothing much new.  But there is the oncologist appointment coming up on Tuesday.  Charity has not received notification of blood work yet.  I really hope they do a CA-125 test.  I just need to know these details – as good (or bad) as they could be.  As stated, if still a significant (even normal range) number – even, 15-20, then that will be disappointing. 

Surely though, it’s < 10?  We’ll see. 

Note:  

Always make a point of getting away.  A change of scenery even for one night can be amazing!  Don’t worry about the money – seriously. If you don’t take advantage of these (good) times, you may look back and regret it.  Actually, you will look back and regret it.  So do it. 

December 11th 

Oncologist appointment tomorrow and Charity is (inwardly) nervous.  I am too.  But there is an issue.  She has not been scheduled for any blood work.  How is this possible?  What is there to discuss without blood work?   

It would go something like this... 

Dr: “How are you feeling?” 

Charity: “OK, a little tired still.  But ok” 

Dr: “See you in 3 months” 

This is neither acceptable nor productive. Even if the Dr says ok, go and get some blood work done and …  It’s still a waste of time.  We need to go there, get blood work, then see the Oncologist and discuss the results.  CA-125?  Remember that?  It’s important.  It has now been 3 months since chemo.  What is going on? 

Without the blood work, no one knows anything – period. 

Of course, if it does work out this way, I need to say something.  It’s in my wife’s best interest to let the Dr know this is not how we need to operate here. 

As stated, a few times now, how hard can it be to be a Dr?  At least I would schedule blood work when necessary.  

Right now, I am really pissed off.  Seriously.   

Update tomorrow. 

December 12th 

Getting ready to leave.  I still feel the same as yesterday.  Without blood work, what is the point?  But the real point is... Where is the monitoring? 

Back now. The Oncologist has recommended a 5-week course of Radiotherapy – each week being Monday-Friday.  Because of the strain of Cancer, Carcinoma?, she cannot prescribe immunotherapy.  The reason being is that it “sounds” like it just doesn’t provide the benefits for this cancer.  In other words, the costs of providing this, do not reap enough benefit. 

However, Radiotherapy might.  I am sure that I read that radiotherapy after a hysterectomy (for cancer) is generally the accepted follow-up?  Just to ensure that anything left behind by the surgeon (cells you cannot see...) are destroyed. 

Therefore, while a surprise to us both, it should not have been?  

So, the journey continues.  I know Charity was hoping that this was just a check-up, and everything is cool... see you in 3 months.  It was, just this new thing to deal with. 

There will be a general CT scan – and a targeting scan that will be used for the radiotherapy. I wonder what they are looking for in the targeting one? 

Blood work was done after the appointment.  The Dr Asked if Charity wanted her to call her if the CA-125 number – or others – have gone up?  This is what should have been done BEFORE the appointment.  Now she must wait.  The Oncologist is very good of course, but details like this are important. 

December 14th 

The Dr rang yesterday with the new CA-125 number.  It has gone up to 54.  That 2.6 times higher than the last reading (which was pre session 6).  The Dr said she expected it – well, we bloody well did not.  I was thinking that after the mass was removed, then if anything it should go down significantly?  No. 

What does this suggest?  Well, certainly there is active Cancer there.  But where is the question.  It could be anywhere I suppose.  The Dr is assuming (I believe) that the cancer is in her “pelvis”.  But surely, it can be anywhere now? 

Hopefully, the targeting scan will show us.  But... could it not be that the cancer is in multiple places now – which would rule out “targeting”?  Worst case scenario probably? 

Charity said yesterday she now knows why some people give up.  I simply said “you are a very, very, very long way from giving up”  

Like I said, Cancer gives you hope, then takes it away.  Soul destroying. 

Note: 

At times like these, your loved one needs understanding and someone to listen to.  You cannot imagine – let alone feel -- what they are going through.  That is hard.  Just be there, let them know you are there, and above all, show them love. 

December 15th 

I have been thinking. The radiotherapy will again reduce the CA-125 numbers.  However, 3 months after that surely, they will double again?  A small projection.  Today it is 54. Radiotherapy begins in about a month. If it took 3 months to more than double (2.6 times) then one more month should be close to double?  That would make the number approach 100.  Even being pessimistic, it will be 75+. I could be very wrong about this – going either way.  But let’s face it, cancer is starting to win this battle. 

I have a very real feeling that this is our last Christmas together. 

December 19th 

Had a bit of a “wobble” Saturday to yesterday.  Again, a few drinks that turned into something much worse.  I sort of knew that was coming, just a little disappointed it did since Charity gets upset with me.  And she doesn't need being upset.  My fault entirely.  I have been doing ever so well with this.  Well, no sense beating myself up.  Just get back to what I was doing. 

Maybe have the occasional drink so I don't miss it.  I know I can... Just a matter of focus and discipline. 

Charity received a letter from work.  Her statutory sick pay has now ended.  You get it for 28 weeks (by law) then it’s gone.  It wasn’t a fortune, but... 

How are people supposed to live on what she is now getting?  I know there is help but luckily, we don't need it.  Having cancer and the stress of money would be very, very hard to take.  And many are affected like that, I’m sure.  

December 21st 

When Charity woke up yesterday, she said “I’m scared...”.  She’s scared of what the next scan might show.  That scan was yesterday: neck, chest, abdomen, pelvis.  So basically everything.  The last scans were negative when the CA-125 number was low 20’s.  Now that it has more than doubled...? 

My guess is that nothing concrete will show.  And that anything that does will be easily taken care of by the Radiotherapy.  That is my hope.  Charity might see it entirely different of course.  I can’t put myself in her place. 

My own fear remains.  What happens after Radiotherapy if Immunotherapy is no longer an option? 

She also started on preparation for the targeting scan.  Basically, taking a laxative to ensure the bowel is clear.  This has had an adverse effect – vomiting and so on.  So, a difference in dosage has been advised.  Nothing is easy. 

Was thinking about e-mailing the Oncologist’s P.A. and saying I'm concerned there doesn't seem to be anything after Radiotherapy.  What will happen if/when the numbers start rising – and I am certain they will. 

Decided not to.  Will wait for the results of the scan.  Maybe then I ask... but I don’t want to upset Charity. 

It just goes back to... If someone knows they have short time to live vs many years etc, perhaps they make different choices in their lives.  i.e. they make the correct choice based on what they know.  But first you need to know. 

I just feel – again -- that Cancer is starting to win this fight.  It just a feel of inevitability to it?  Glass half-empty I know, but I just can’t shake it. 

December 22nd 

Worst day of the year?  Charity’s daughter Channe was born today – as was her sister, as was my late wife. All deceased. All different reasons.  But the most bizarre of coincidences. 

So, off to the cemetery to pay respects to Channe, then down to Tower Bridge (just me) where I spread Elizabeth’s ashes a little over 20 years ago now. 

And this is Christmastime?  Not for us. 

Charity projectile vomiting last night.  Sent 2 emails to the Hospital.  I have no idea why she had such a reaction to a ‘gentle’ laxative? 

Hospital rang back.  Advised her to try Senna – it's a little different. 

Well, Charity had cramps today – but no vomiting.  Perhaps this has settled?  We’ll know soon enough.  She will try and take 2 of the (original) tablets tonight. 

Back to the cemetery for a second.  Charity gave a short speech at Channe’s graveside.  Very touching, very moving.  Damn she’s strong.  Proud of her.  I wear my heart on my sleeve much more – or just withdraw.  She’s positive.  I just can’t be all the time. 

After the cemetery, Charity has gone to her son’s house (Tashinga). The one I had the incident with.  She asked me to get her an Uber home.  I’m thinking... What?  Your son can't give you a lift home? 

Almost speechless.  People should be queuing up to help her get home – today of all days.  Of course, I don't know the whole story here. But... What a fucking waste of space some people are.  I don't care if he’s got something else to do.  Get your mother home. At least YOU call her an Uber! 

I was right in my assessment of him after all. 

December 24th 

Charity still has cramping – but not so severe that it cannot be handled. Still though, affecting her in a negative way. 

I re-read my entry from the 22nd. Perhaps a little harsh on my part. Of course, Charity is going to call me to get her an Uber.  But... if I were her son, I would have brought it up right away.  “Mum, just let me know when you want to go home, and I’ll give you a lift, or get you an Uber”.  Not bloody rocket science. 

Christmas tomorrow.  So?  Really.  This year since April has been a total disaster.  And I do not want to think of what 2024 will bring. 

Merry Xmas and yes, once again, fuck cancer.  (It actually makes me feel just a little bit better when I type that!) 

December 25th 

Not the best of days. I needed to get “black bags” was told by Charity she will get her son to bring them.  ok.  Then went downstairs, got my tea and was going into the ”office” to do what I do every day.  Take my meds and read the news.  I was basically told to stay with Charity.  Pissed me off.  I can't go and get bags for the rubbish, can't go to the office?  She said she wanted to spend time with me.  Great – but I just got out of bed.  Where was I for goodness' sake? 

Anyway, she started to cry.  When I asked what was up, no response.  After repeated attempts she said “Everything”.  Now, that doesn’t exactly clear it up.  Eventually, Charity said “Her health”. Now I understand (perhaps) why she did not want me to go anywhere and spend time instead with her. 

Patient’s note: 

Here’s the issue.  Putting a brave face on at all times is fine... but it masks how you really feel.  In this case, I had no idea (but of course internally, I do know) that she was feeling this way.  She also said maybe she should have spent more quality time with her children this Christmas. Please share your thoughts with your loved one.  They count too – and by not doing so risks communication issues.  These can make small issues much bigger than they are. 

What have I been saying about knowing the real state of play?  If you know you have 20 years to live, you make different choices as opposed to if you have much less time to go.  We don't know what the case is here.  I’ve always felt we should.  Then perhaps, proper choices are made. 

As for the rest of the day?  Who knows?  I will make dinner.  Charity’s son will probably come by.  Maybe we will go to my Mother-in-law's to say “Hi”. 

Not much of a day.  Totally expected – and a day wasted. 

December 26th 

Hopefully a better day today. Charity will not take the meds that are causing her to vomit.  Her scan is tomorrow.  If the fact that she did not complete her course of these means the targeting scan is delayed, I’ll go crazy.  Unacceptable.  Almost everything about cancer treatment is about timing. 

I posted in the MacMillan cancer forum just now.  I want to know what the options are after Radiotherapy.  I don't think there are any. Immunotherapy has been ruled out.  And chemo needs to wait another year? Hopefully someone will answer today. 

I also need to get some advice on how to get the proper prognosis here.  This needs to be known. I know my wife does not want to know – but maybe it’s time that she must know?  

December 27th 

Answer from the MacMillan forums.  “It depends...”  Ah well, was worth a try, but unsurprising. 

Just back from the targeting scan.  They will do the pelvis and neck (Lymph node) at the same time.  Because of this, Charity needed a mask made. It will start on January 15th for 5 weeks.  5 days per week.   

Jesus.  Hard for her no doubt... but remember, work just doesn't go on hold either.  This is one of those times where Carer's  like me are definitely under-appreciated.  Not un-appreciated, just under-appreciated. Consider: having to re-schedule everything for 5 weeks... working early or late to make up for lost time... spending probably £1,000 on Uber during this period. And that is before caring for my wife.   

Anyone that thinks this is easy should have a good talk with themselves. Seriously. 

We did get the meds changed from the evil Dulcoease though -- small victory.  I had to explain to the Dr what was going on.  I love my wife of course.  But sometimes it’s a case of... “When I ask you the time, don’t tell me how to build a clock”. So, it was confusing to all what she was saying.  Again, it’s a matter of being prepared.  It’s why we made notes in the first place. No big deal though.  Some things frustrate me, and I find I am getting easily frustrated over little things now. Maybe it’s because this is the holiday period, and it has been anything but a “holiday” 

Patients note: 

Stick to the facts when talking to the Dr about how you feel and what is going on.  Don’t confuse things with any other “things” that come to mind. Be concise. 

I am deeply, deeply concerned about 2024. 

December 28th 

Kidney scan today to ensure that they are working fine.  I doubt there are any issues there at all.  But better to be safe after the stents were removed. The follow-up appointment for the results is January 5th.  Wonder if can move that to a telephone appointment?  I’m sure we can. Not my call though of course. 

Charity feeling very weak.  The strain of the Dulcoease, vomiting and so on are taking a toll.  Now that she is off that, hopefully she can start eating normally asap and gain her strength back.  Poor girl.  Not getting much of a break.  What did she do to deserve this?  Nothing of course. 

Back from the scan.  While there, I received a phone call from the Oncologist’s P.A. She wanted to schedule a face-to-face follow-up for Tuesday.  No problem there.  But she also said the Oncologist wants to speak to us before.  This has filled us with dread and anxiety of course.  She has never called before an appointment.  Did the neck/chest/abdomen/pelvis scan show something?  I can only think the answer to that is yes.  Here’s hoping I'm 100% wrong. 

The Doctor called just after 4pm. Bad news.  The Cancer has spread to Charity’s Lungs and Liver with some evidence of “suspicious” Lymph nodes in her Chest and Pelvis. 

Shocked. 

Radiotherapy is now cancelled.  In its place will be more chemotherapy (once per week for 3 weeks, then a week off when they scan/CA-125...) then back on it.  She will be enrolled in a clinical trial at St. Barts starting in February (date TBC).  This will be an immunotherapy trial using a drug called Pembrolizumab which has shown good effects for Endometrial cancers. 

The fight is not over. But my intuition that 2024 will be a terrible year is looking more and more correct. Although I have suspected the worst for some time, I am simply not ready to lose her.   

December 29th 

I was thinking about this persistent feeling of nausea that Charity is experiencing. Given that the Dr said no-one else has reacted in this way -- this is a gentle “loosener” and so on. I am really starting to wonder if this is not the Dulcoease after all, but the fact that the Cancer is now in her Liver and Lungs.  More so Liver?  Just a guess, but isn't nausea (and appetite loss) closely related with Liver cancer?  I will see how things are today – but if this continues over the weekend, then something must be done. 

I have also been thinking about the phone call from the Dr yesterday.  It is not so much a surprise I suppose, but just earlier than I anticipated.  I really thought Charity would be in remission (or close to) for the best part of 2024 – maybe 2025 as well or further?  I knew the Cancer would resurrect itself at some point.  If there was a miracle, then it would just stay away.  So, it’s the speed of this development that is the surprise. 

Cancer is like this for the football minded.  Your team is playing the best team in the league.  The match starts and you’re doing well.  Perhaps unexpectantly so.  You go a goal up. You then start to hang on – but there is still hope for a win.  But then, the best team in the league scores 2 late goals to beat you.   

I said early in the diary, that Cancer has a good winning percentage.  

We must do better.  We simply must. 

Charity’s Mum is coming by today with Sadza and Okra.  The Sadza is a traditional Zimbabwean dish that is full of carbohydrates.  Hopefully Charity gets that down – or at least, a substantial amount. 

A few of Charity’s friends might come by as well.  They know nothing of the new developments.  I’m sure Charity will tell them. 

Note: 

It's easy when visiting someone with Cancer to relate your own experiences.  Don’t.  Try and not bring up your own experiences.  It’s really not helpful. Listen, try and understand.  Also, don't ask too many questions.  Many things are unknown and that in and of itself can be a source of frustration.  Let your friend/loved one just speak and listen. That’s best. 

Going to go for a run today – probably down to Warren Street.  Need a longer run that I’ve done this week.  Before the holidays I was doing this every Saturday (a long run).  I’m out of my routine a little.  I need to always remember to keep my routine intact. 

Carer’s note: 

Never forget about yourself.  Your own well-being.  It is not selfish, it is necessary.  It is hard looking after someone, and you not only need to be physically well, but emotionally as well.  For me, running does that.  For others, perhaps other activities.  The point is, look after yourself.  Never forget that you too, are important. 

A longer day than most.  Charity managed to keep the Sadza down.  But she had an event in the bed.  Uncontrollable diarrhoea.  Poor girl.  She was very embarrassed – of course she should not be. I changed the bed, put her back into it.  Covered her up.  At least the Sadza is still inside.  I am more convinced than ever; the Liver metastasis is to blame.  But what do I know? 

On another note: Charity’s son was here today (the “incident”). When he left, he shook my hand.  Good.  Charity saw that.  My good nature and living paid off in the end I suppose (my sense of humour of course).   Anyway, good and, water under the bridge. 

December 31st 

New Year’s Eve. What will 2024 bring?  All I want is for some degree of remission for my wife.  Nothing more than that.  It’s been a mostly downhill ride so far.  Yes, there was good news along the way with the CA-125 numbers, and the second surgery was a success.  But the metastasis is a real problem. We’re really pinning all our hopes on Immunotherapy – although we haven’t said as much.  But it’s pretty clear in my mind. 

Here’s how I think early 2024 will play out. 

Start chemo.  It does have a positive effect on CA-125.  Scans don’t show disease progression. 

Immunotherapy. This also has a good response. How long will Charity remain enrolled in this programme is beyond my guesswork. 

After Immunotherapy stops, a 3-month scan shows it’s back.  That would take us to June-August or so? 

After this, I cannot bear to even think about it. 

Now, it is possible that Immunotherapy works wonders and 2024 gives us what we want – a degree of remission and the ability to live.  That is my hope.  It’s all I have. 

I love her and the thought of living without her is unbearable.  It took me a lifetime to find her.  Having her taken from me is cruel.  Having her taken from everyone is even more cruel.  There’s a good reason she is loved and respected by so many. 

Note: 

I know I am sounding negative – and have plenty of reasons to.  But I am very hopeful of the Immunotherapy trial.  I must be.  If anyone reading this finds themselves in our position, never give up hope.  Ever.  Keep searching, keep asking.  It might seem pointless at times, but what is the alternative?  That's right, there is none. 

January 2024 

January 1st 

Happy New Year!  Charity asked for 2 slices of bacon and 1 egg this morning. She will try and eat it.  Good!  It doesn't look like that is going too well though.  

We have an Oncologist appointment tomorrow to discuss the scans – a follow-up from the telephone conversation last week.  The regular Oncologist is out so we will see her colleague.  We have a list of questions ready. 

I doubt we will get any concrete answers. 

Of course, work begins again tomorrow, and right off the bat, Dr appointment.  I need to learn to cope with scheduling everything all over again – so it feels like.  Not just scheduling work, but the way you must adjust your mind to the constant stop/start aspects of this. 

I made Charity some soup for lunch – well, re-heated what a friend of hers brought over.  Chicken soup – with carrots and dumpling.  She did ok with it.  She had all the soup and carrots and part of one dumpling. Appetite not there. It makes no sense now.  

The “Dulcoease” effect must have worn off by now? We need answers. I am doubtful any are forthcoming tomorrow though.  If not, how to deal with this? I still think, the lack of appetite is because of the Liver metastasis. At this point, how can it not be? 

Again, when confronted with new “things”, my mind goes completely negative. I’m thinking the clinical trial will not accept Charity.  A bit of chemo – palliative – give her more time, then... 

I need to stop thinking like this but I’m alone with my thoughts.  I really don't talk to anyone. 

Carer’s note: 

Don’t be like this.  Seek out help or minimally talk to those you trust.  Thinking in a negative fashion will not help anyone. I know it’s hard.  I’ve tried to be positive, but these negative thoughts creep in.  It’s hard not to over-analyse, but remember, we are not really in control of this.  The Doctors are.  And while we might question their methods, or conclusions, they do know better than us. So?  Put your faith in them.  Ask important questions, hard questions... but don't think you know everything.  You don’t; I don’t.  In fact, no-one does.   

And that is the issue.   

It must run its course with the best medicines we have available.  There is nothing else we can do.  Frustrating?  But just try and leave it and enjoy your loved-one – always. 

January 2nd 

Back from the Oncologist.  Charity’s Oncologist is on leave, so we had her colleague.  He didn't seem as sharp in my opinion.  He had difficulty reading the CT scan. The current sickness could be an infection.  It could also be the cancer.  So, a process of elimination. That approach seems reasonable at this point. Charity had blood work to see if there is any type of infection is present.  I am not sure why this did not occur to me.  See?  Cancer, has you leaping at every crazy reason for feeling bad.  Here’s hoping if it is an infection, a simple anti-biotic will send it on its way.  If there is no infection, what is it? 

We asked about the Immunotherapy trial. The stand-in said it opens in February and then they will see.  WTF?  I thought this was the plan.  I must have misheard. Of course, the stand-in Oncologist could be wrong.  Here’s hoping, but I doubt it.  Usually, patients need to be accepted based on certain criteria.  Fuck! 

Can’t catch a break lately.  Surely something will change? 

Blood work did not show any infection.  Charity now needs to do a stool sample which I will take down the hospital. Needs to be a reason for this.  I’ll need to keep on them to ensure they “drill down” as to the root cause. 

January 3rd 

I tell you, being a Dr isn't that hard.  Surely?  A few searches and I found Charity has 6 out of the 8 common symptoms for Gastroenteritis. So, perhaps this is what the current issue is? I certainly hope so! 

I suspect (if it is this), she picked it up from a hospital visit. Today has seen an improvement though.  I made her an egg and some toast this morning and that has stayed down.   

She needs to regain her strength before chemo begins.  Her Mum is coming over again today with “Sadza” -- with spinach.  If she keeps that down, then I’m sure she is on the road to recovery. 

Back to chemo for a minute. The “nodules” that have appeared in various places, are small.  I am almost certain that these new chemo sessions will kill these. I am also forgetting about Immunotherapy for some reason.  Perhaps meeting with the Oncologist yesterday and being told that it is basically “We’ll see when it starts...” has made me somewhat pessimistic that this will happen.  But I do know that this new cancer has been detected very early, and chemo will kill it.  It did before, why not now?  That said, it did mutate.  I am hopeful it will kill it and we have remission. I must think this way – and I believe it. 

Work has restarted in earnest.  It’s like I’ve never been gone. Although I did run during the holiday period, I didn’t go as much as usual, so I need to get back to that 100%. It’s good for the mind, soul – and of course energy levels. Basically, it’s good for everything. 

Carer’s note: 

It’s hard – or near impossible – for cancer not to consume your life.  It must of course.  Just don’t let it get to you in such a way that you have trouble coping with other things.  This is why you must take care of yourself – and have other interests if possible. As stated, for me, running is good with multiple benefits.  Never forget about yourself. 

January 5th 

I have actually had a good first week back at work.  Surprised by that.  Maybe I am somewhat re-charged – which seems impossible! 

We had a call with the Urology Doctor.  It seems that the right kidney is working at about 16%.  This means that Charity now requires a new Nephrostomy followed by a new stent. For goodness' sake, is there never any good news? 

The reason for the “dilation” is a little unclear.  It could be a scar on the ureter caused by the Cancer, maybe it was a result of surgery?  But whatever the reason, it sounds like this is now a permanent issue. You can of course, survive easily on 1 kidney, but... 

So, again, an unclear answer after a CT scan.  Not acceptable.  “It’s probably this, or maybe this etc.”  It’s time Drs realised that they need to have concrete answers, not some hypothesis – especially after a CT scan has been done.  We need: “This is happening because of ...” 

At least the other kidney is working well.  And that was the one that ruptured back in April! 

We have no choice here but to take this in our stride. It’s not great news, but not the worst either. We're far more interested/concerned with the metastasis. 

So, where are we now?   

Waiting for the illness to run its course. It looks like Charity is getting better from her bout of illness.  I say “looks like” since it is gradual.  Still no appetite, but other things seem to have improved slightly. 

Waiting for the results of the stool sample I took to the hospital yesterday. 

Waiting for chemo to start. 

Waiting for the new Nephrostomy/Stent procedure 

Waiting to see the results of the chemo.   

Waiting to see if Charity is accepted as part of the clinical trial. 

Then, just waiting... 

Not in a great place. 

January 7th 

Charity had a reasonable day yesterday.  She vomited once though.  I only gave her Ensure – instead of solids, and she has not been sick overnight.  Today, 3 Ensures and we’ll see about solids a little later.  She is very weak though – physically, and she speaks very softly. I highly doubt this has anything to do with Cancer.  Imagine, not having a “proper” meal for almost 3 weeks? 

I know she is against going to A&E, but if things deteriorate and she cannot keep the Ensures down, what choice does she have? I will monitor her closely of course. 

On another note, I paid my self-assessment yesterday. I still need to pay my corporate tax by the end of the month. That will be my last time since I changed from being a contractor to full-time a year ago.  Looking back and what I know now, it was fortuitous timing to say the least.  

When I look at the money I pay in taxes – and I am honest – it makes me wonder how the NHS is broke along with our other public services? Money must be wasted, must be. I’ve never really given this type of thing serious thought since I only focused on myself and my family.  Do we have enough?  Sort of yes.  So, we’re fine.  Now, I am more aware of services and wonder... WTF? 

I will say this though, The Junior Dr pay issue needs to get resolved.  £15 per hour for them? That is simply put, ridiculous. They basically saved my wife’s life! 

And I am tired of hearing the politicians say we put ‘x’ into it – so we’ve done the right things.  OK, where’s the oversight then?  And NHS... Are you using the hundreds of billions you get in the best way?   

I don't know – it's above my paygrade.  But it needs to get fixed.  End of! 

As an aside, I asked ChatGPT about the NHS budget.  The response: 

The budget for the NHS is typically announced as part of the annual government budget. For the fiscal year 2021-2022, the NHS budget in England was around £160 billion...  

That is a lot of money.  

Charity wanted to have a bath today.  Good!  So, I washed the bathtub – to her specifications, then helped her get in and washed her.  She is that weak.  During the time when she was relaxing, I changed the bed, looked out fresh knickers, top etc, new hot water bottle. 

There is nothing better than after a bath/shower getting into a clean bed. Women probably appreciate this more than men, but I know it is a particularly good feeling. 

Carer’s note: 

These simple things – again – make your loved one feel special, like they are cared for, and for a woman, make her feel beautiful as well.  These are simple things we can do that can make a massive difference. As I have said, the Drs certainly do not know the power of this in fighting this awful disease.  Feeling loved and special, happy... This is not what Cancer wants!  Cancer loves misery and to just give up.  No chance of that happening to my beautiful wife.  I love her more every day. 

I suppose it’s the weekend.  I went for a run down to Warren Street.  Surprised myself.  Did well! 

I do not leave her alone right now – her son Kai was here.  He is a good man.  He does so much for us. 

She has kept ½ of the sea bass down – all she ate.  That combined with the Ensure means she is OK today.   Let’s hope! 

January 8th 

We started on the 8th in a fairly good place. But more vomiting.  I sent the oncologist PA a note and the Nurse rang back.  The advice was to go to A&E – which we did, and I am just back. 

The root cause is a blockage of the bowel.  Now, the A&E Drs don’t know why – just how to treat it. They said maybe this, maybe that.  

What do I think?  Yes, it could be scar tissue since that was a risk of surgery.  Realistically?  This disease has grown and obstructed the bowel.  It’s the first place it goes – and let’s not forget, this did not appear a few weeks ago.  But who knows?  

That’s the thing, isn’t it?  No answers, and guesswork when your loved one lies there alone. 

January 9th 

It seems like there are 2 issues.  The bowel obstruction and a Kidney obstruction.  We knew the right Kidney was about 16% and Charity needed a Nephrostomy and subsequent stent. Doubt this is the root cause though?  Her other Kidney is fine, and I suppose if one is ok, then...  

The blockage in the bowel might require surgery if the steroids don’t work. 

I received a call from the head Oncology nurse.  We chatted for about 10 minutes.  It was a good call – in the sense I think I got more information out of her than previously.  Here is what I think the true state of play is: 

The bowel obstruction has been caused by the disease.  The nurse said they were surprised at how quickly this came back and how it is affecting her bowel. Surgery is probably going to happen followed by “in-patient” chemotherapy. 

I said to the nurse that Charity cannot be having surgery every week and so on.  She indicated that the plan is (paraphrasing here) to get her to eat and drink normally again – but they know this is not going away. I mentioned quality of life ...  which she agrees with.  Without saying it, the plan therefore is to make Charity comfortable and living as normally as she can because not much else can be done. 

That’s my take.  I am reasonably certain that’s the “official” position.  I did not ask “how long”. Why? But let’s face it, this is the beginning of the end.  Or maybe, that was last April? 

I would like nothing better than to be proven wrong here. It has not sunk in yet.  I suppose when you have hope it shields you from certain realities.  Now?  Very little hope – and very little time. 

I love her.  That’s obvious.  She is my whole world.  I cannot imagine living without her.  Not one second without my beloved wife Charity. 

I’m feeling pretty down. I think sometimes, we need to understand that there is good in this world as well.  Yes, we suffer, yes life basically “sucks”.  But every now and then, someone comes along that revitalises your faith in the world.  I just re-watched Barack Obama’s acceptance speech in Denver in 2008.  It’s not just that speech, it’s his story. That a young black man can become President of the United States. Now, that was hope and worth remembering.  

Note: 

Try and find inspiration from somewhere, anywhere.  Just being down (and yes, that happens), really isn’t our normal state.  Get inspired and start believing (again) that we are – or should be – all in this together.  It’s our world.  We need to make it as good as we can.  Yes, there will always be challenges.  But don’t we have to try?  Thank you, Barack. 

I spoke to my son James in Toronto. Very proud of him.  He said he will chat to my youngest son Mark in Birmingham to come down to London for the weekend.  He’s probably concerned about my mental health right now.  He called earlier when I was at the hospital and spoke to Charity.  Probably saw her with that tube in her nose and thought this must be difficult for all.  He’s right. 

January 10th 

A few things.  I slipped up a little and told Charity the Oncology nurse called me yesterday.  She wanted to know why I didn't tell her.  The reason I didn't was it sounded like bad news and that should really come from the Dr in my opinion.  I just don’t know enough and what if I mis-heard, mis-understood etc? 

The nurse called again this morning. I sent a note last night asking about the proper prognosis.  The Dr will come and speak to us both today at 3pm. If this is as bad as I am thinking, then it will be the message that we’ll do surgery, try chemo, then... nothing more we can do. I don’t think Charity wants to know.  But as I have said many times, wouldn’t she want to spend more time with her family? 

This is not going to be a good day. 

We met the Dr today.  She simply confirmed what I thought.  The obstruction is because of the cancer. Surgery is probably not going to happen – and I’m fine with that. They will look to start chemotherapy as soon as possible.  Maybe by Friday. That is the correct approach in my opinion.  Surgery requires recovery and we want chemotherapy right away. 

The Dr said that about 30% of patients respond well to the second chemo sessions.  Which means the 70% that don’t are now cut off from it.  Basically – why give someone chemo if it is not working – and just making them sick, weak and unwell? 

If she does not respond, then... it will simply grow, metastasise and... doesn't bear thinking about. 

A bad day indeed – not surprising to be honest.  I knew this was coming – just a few years earlier than I thought. 

January 12th 

I am not going to the hospital today.  Charity will have company.  And I need rest. 

Chat tomorrow. 

January 13th 

Charity looking well.  It’s hard to believe what is going on inside her.  Her sons were there today at the hospital along with her Mum.  I find when I am in that environment, I just listen.  I’m not really part of the conversation.  That’s fine. 

I am more convinced that this is the beginning of the end. Chemo hopefully buys a little time – enough to say goodbye. I’d love to take her home to Zimbabwe for a last look if you will.  But I doubt she’d go for that. 

I am also seriously thinking about giving up work when this disease takes her from me. Right now, I am just not motivated, no energy, to carry on. 

I need to figure this all out if I am to survive this. 

January 15th 

Chemo should start again tomorrow.  I am a little under the weather so will stay away from the Hospital for now. 

I have been looking at pictures of her constantly.  I want her back.  I want our life back! 

Yes, I want our life back.  In many respects, I want life to pause.  Stop this madness.  But for fuck’s sake, give her back to me.  She can’t die. Please? 

I know she will.  I do not want her to suffer.  I do not want anyone to suffer anymore more than they should.  But this will last a lifetime for so many. 

The nights we shared in London.  When she always looked amazing. I really, really love her.  She gave herself to me.  Completely. 

August? That is me doing the “math”. Starting to get my head around that now.  Good.  And work has been supportive. Maybe there are good people. I know there are.  Richard (the man that hired me) is one – clearly. 

He said, “Rules apply – family first”.   Thank you, Richard. 

Call from Charity.  Chemo started today. Thank God for that. Of course, how can there be a God with the shite going on in the world.  

I rang MacMillan today – crying on the phone. It’s all a wee bit much right now. Interestingly, I feel like carrying on.  But I have no clue what life is about anymore.  Empty, lonely, hopeless.  That’s where I am right now.  I better be careful.   

I don't give a fuck if MacMillan are on the end of the phone (bless them) -- help is not what I need.  I need my wife. I need her smile, I need her beauty, I need just simply – her. 

January 16th 

Still under the weather. Charity will be starting to feel the effects of the chemo soon, I think. Her immune system is weak. 

I have had good support from work.  Good to know. I can’t make any changes though. My decision.  Cannot focus.  Still think I will hang it up. Why not?  I asked my sister to just tell me to stop.  She did.  Maybe I need someone to tell me what to do. Thank you, Moira. 

I had a good chat with Charity’s cousin – Michelle.  Amazing, brilliant person. She has always supported me. Even during the “incident” on May 29th last year.  I appreciate her. 

I think I want to carry on.  I want to go back home to Scotland for a wee bit.  I always feel at home there.  Let me get my bonus first though in February. 

Damn, I will miss Charity.  That said, I miss my mother.  When Charity and I were in Lanzarote, I told her I really miss my Mum.  Not sure why...  Just came out.  My Father, sure... but my Mum brought me up.  I love her and miss her always. I am so much like her. 

Everyone needs a God of course.  I don’t judge.  Mine is Rangers.  Since 1872, always there, always strong. Charity came to Seville with me in 2022.  We lost.  But she did not hesitate to join me. 

The Rangers and my memories of my darling wife are what are keeping me alive.  I know I sound like she is gone.  She’s not.  But our life is? 

January 18th 

Early morning.  10 minutes past midnight. I cannot come to terms with this. 

My son Mark will come down this weekend.  He will not come to the hospital.  Actually, I don’t want him to.  Traumatic.   If I am healthy enough I will. Then? Come back, then we’ll watch Godfather 1, 2, 3 and 4. Maybe even Scarface.  We like Mob movies. 

Charity’s cousin rang me this morning. She lives in the US and is a Dr. She understands all of this. She gave me some advice – thank you.  I could hear from her tone that this won’t be long. Damn, let's be wrong?  I just want this year.   

This is what you start to do with Cancer.  You start to reduce your “limits”. 

When my father died, the “Minister” explained this well.  Your “circle” of control becomes smaller. 

Charity just rang. Tube in her nose still in. She is sending her son here with Lemsip. See?  She thinks about others.  Incredible human being.  If the world was made of Charity’s...there would be no wars, no hunger, no suffering.  She is my hero. 

I love her, adore her and most of all respect her. Strongest person I know. 

My son will be here tomorrow.  I bought him a first-class ticket from Birmingham.   I am really looking forward to seeing him.  Damn, I miss my kids. 

I can’t even watch the dramas we did.  We watched them together.  If Charity is not here ... I can’t watch.   

This chemo better work! 

I have to believe it will.  The world cannot and must not lose her.  She is the epitome of what a good person is. I love her. 

She has a good family though.  Very good support. I think maybe they now realise that it’s time they stepped up? 

January 21st 

Feeling very, very down today.  Anxiety. Work will let me work in the mornings and go to the hospital in the afternoon. Very helpful. I think I will go back into the office a few days a week.  I’d still leave around 2pm and go and see her though.  Just getting up, dressing, and seeing other people will help me get through this.  Or at the least, reduce the anxiety since I won't be looking at her picture all day every day.  Feels like that anyway. 

January 22nd 

Just spoke to Charity.  She is very tired. Is this just the chemo/lack of proper food (although I’m sure she is getting plenty of “nutrition” via her IV) or something more sinister? 

Chemo just started.  Charity asked for no one to call. She did not sound or look good at all. 

Going to see her this afternoon. I had to sort out some work stuff that has taken a backseat lately. 

I want her to just get better – as well as possible. This whole process is awful. Hearing her – she seemed almost in some distress to be honest.  I will only be able to tell when I see her in person. I will leave soon. 

Charity was weak. Her chemo was still going on when I arrived.  She did manage to get up and make her way to the toilet.  She is on a liquid-only diet. She vomited last night?  Or maybe it was the night before. 

I tell you seeing her like this and then trying to imagine coming back to our old life seems impossible.  Even a small semblance of our old life seems highly improbable. But who knows.  The chemo might be working miracles as I write this. I must remain hopeful. There is no choice here.  None.  Hope is all we have.  We always have memories of course.  When we first met. Holding hands. Just enjoying each other. We didn’t have to go out. I simply want more. I hope that is not too much to ask. 

January 23rd 

I spoke to Charity this morning.  She said she had a good sleep.  

I sent a note to the Oncologist asking about the possibility of the Immunotherapy trial. I am waiting to hear back.  Also, assuming Charity has a good response, do they continue chemo etc.  These are particularly important questions! 

Work was excellent this morning – amazing.  

I am off to the hospital in 15 minutes or so. 

Charity much “brighter.”  A visible change – although energy levels very low etc. There will be a visit from one of the Oncology team tomorrow.  That always makes me nervous. 

January 24th 

A few minutes past midnight. I have trouble sleeping these days. I have got to get back to my running. I am reasonably sure that will help.  But I think the root cause is that I am here alone, and my beautiful wife is lying in hospital, alone. 

This is our new reality, and we must deal with it.  There is no sense feeling down – meaning, don’t let it get us down. We will but need the mental strength now. 

I spoke to Charity this morning. But work interfered and must call her back.  

I think she has blood work every day. Perhaps the Oncologist’s visit today has an update based on the blood work?  If not, why even bother coming?  These visits are stressful – so if you have nothing new... stay away. 

Going to run down to the hospital later. I’ll see how much fitness I have lost. I need to stay as fit as possible. 

Just called Charity back.  No answer.  I always worry when she doesn’t answer. Cancer at work in my mind always. 

The Dr was there when I attended today.  The tube in Charity’s stomach (and coming out of her nose), will be “clamped” to see the effect. 

Basically, that tube removes “stuff” from her stomach that they measure. If you have a bowel blockage, then there is more “stuff” coming out since it has nowhere to go. Makes sense? It seems that there is less of this, therefore a very crude measurement of how well she is responding to chemo. 

It was clamped last night.  We’ll see today.  Here’s hoping that is removed! 

January 25th 

Ah yes. This is my new schedule it seems.  Wake up and cannot go back to sleep.  I went to sleep around midnight, and it is now 03:42am. 

I have a meeting with my boss this morning. After that, some more work and back down to the hospital.  I ran behind schedule yesterday therefore I didn't run down.  Today I simply must. But not if it’s cold and raining. I’d be in quite a state when I got there. 

Just spoke to Charity. She had pains in her abdomen through the night.  I wonder if it’s this tube that’s there.  Having foreign objects in your body cannot be good! Of course, it could be the Cancer. I need to stop thinking that everything is Cancer – but it’s just so hard not to always make that leap. 

January 26th 

My new schedule seems to be here for keeps?  It’s 4:06am. 

Going back to bed and try to sleep.  This can’t be a good routine.  It will catch up with me.  I know it will.  

I’m just home.  Charity is very tired, but probably because of the pain meds she is getting? I think – not 100% – the tube will remain until Monday.  It is still clamped though.   

We had a discussion with the Nutrition Drs today mainly about administering the nutrition at home.  We would have the aid of the district Nurses with the goal of teaching us how to do it ourselves.  I think personally, that is a bit risky since it involves cleaning the lines properly and so on.  So, I think we'll ensure that the nurse does this.  But... open to learning. Just at this point, it does seem a bit too much.  Better be safe. 

I know my limitations. This is probably well beyond them.  Changing her Nephrostomy dressing was probably my limit in this stuff.  I could probably give her a blood thinning injection but not really more than that.  This involves a specific procedure that must be followed.  The nurses make it look easy – but pretty sure it is not straight forward. 

I’m concerned about how Charity looks and is breathing. Maybe it’s just the chemo/exhaustion/pain meds (morphine).  But... when the Drs were there this morning, they said that it’s probable the disease has caused “nodules” in her stomach. This would explain the new abdominal pain now for a few days? 

Note:  

A nodule is a small mass. Which at this stage means it is spreading there now in my opinion. It doesn't mean these nodules are cancerous... but surely, not a good sign? Why the pain in the stomach if it is “nothing”? 

I’m prepared for the worst now. A few months at best?  I just want her home. Making it back where we can go away is impossible – that would be a miracle and I might even become religious if that happened.  Seriously.  It’s not just how I feel.  It is what I am observing. The breathing, the exhaustion (ok, that might be explained), her voice is almost a whisper – again could be explained. But I’m at the point where I know what is coming. And it’s coming soon. Two plus two always equals 4.  

I hate cancer – and so should everyone. 

January 27th 

I went down to the hospital this afternoon. We have an explanation as to why Charity is so tired.   

When you have chemo your blood counts can go down.  Hers have.  The white cell count is also low -- and that is important since a low count there can make you more prone to infections.  A low count can also delay chemo.  She will receive 2 injections this evening that should address the count issue -- with the added benefit of having more energy.  This is not uncommon.  Chemo should go ahead as scheduled on Monday -- but might be delayed a day or 2 depending on the counts. 

She whispers.  She was upset when I did not hear quite right.  My hearing issue is a frustration for us both. I understand her frustration. But when she talks in whispers and points to what she needs, it is hard to understand. 

On another note, I have been talking with my oldest son James about US politics.  He lives in Toronto – which is basically just a northern city of the US with some important differences (gun control). 

He is up to speed on Trump etc.  A small transcript of our conversation. 

James - I don’t think so either. Those MAGA people are legit nuts 

James – I just hate Trump for giving these people a voice  

Me - True... think about it tho.. they have always been there -- and always will be.  Trump gave them a voice -- totally correct.  But is shows the evil and lack of understanding, human decency that many in America have.  He's smart enough to have tapped into it.  Disappointed in America tbh.  Thought they were better?  Sure, most are... but this sizeable majority of racist, misogynists that he caters to? Education alone won't help.  It's their DNA 

James - That’s why America is going down the drain. Too much divide. Even exhausting going on Twitter and reading comment sections, just pure hate. I don’t think it will end either, Trump started this, and he will have a successor soon and it’ll keep growing and growing. 

Smart boy is James. 

We spoke about him also being a mortgage broker.  He’s an Estate agent.  Help people get a mortgage – he can do this! 

January 28th 

Charity might have an infection.  During the night her temperature was high (how high, I don’t know). They sent her for a chest x-ray and started her on anti-biotics – as a precaution.  Infections can kill Cancer patients – especially if it turns into sepsis. 

I’m very glad the nurses keep on top of this.  They take blood pressure all the time, with the patient's temperature at the same time. Great hospital. 

I came back early today.  I have loads of work to catch up on.  My new schedule works, but there is no way I am as productive. 

Let’s see what happens tomorrow with this infection issue.  The blood work has not come back from the lab yet. Great hospital – but surely, this is priority? 

Right now, I feel like we will not even have dinner “out” again.  

I think I was correct.  This is all about making her comfortable.  The cancer is (imo) spreading through her.  Cancer kills you by making your vital organs incapable of performing their primary function.  The bad cells just take “room”. 

Why would she come home? She needs 24x7 care.  I will (respectfully) object to it.  Now, if Charity wants to come home, that’s fine of course.  It will allow others to see her.  Difficult choices ahead. 

MLK Said “There will be some difficult days ahead...”  From the Mountaintop speech. 

January 29th 

It looks like Charity’s temperature is back to normal and her blood counts are trending towards normal. There was no chemo today because of the blood count issue – but hopefully tomorrow, things look better, and they can proceed with chemo. If they cannot do chemo, then she might miss one session completely. We need to discuss what plan ‘b’ is with the Drs.  I really do not want any delays in her treatment. 

When I spoke to her this morning, she looked and sounded awful.  I was convinced she might not make it through the day. Seriously.  I was terrified. Surprisingly though, she seemed better than yesterday when I got to the hospital. 

They have now removed the tube that was in her nose – to her stomach and she seems ok so far.  Having sips of water and some cordial. Let’s hope the bowel obstruction has been cleared.  I suppose we’ll find out. 

If it’s cleared and she can start to eat, then that removes a barrier to coming home. 

I asked Charity to call me when the Drs come round in the morning.   I really want to hear what is going on – and what plan “b” is – if it is required. 

January 31st 

Charity doing pretty well now that the tube has been removed – and her blood counts are getting normalised.  But eating is forbidden.  The plan is:  

Right now: She has had water for a few days -- good.   

Next: Clear soup, herbal tea perhaps tomorrow for a few days and see...  

Then: Very light diet. Ice cream, yoghurt...  

And just keep progressing that way. So, one step at a time and see. 

We spoke to a nurse we know – she works as part of the Oncology team. She explained that there is disease around the bowel that caused the blockage – and we must wait for chemo to work.  It does look like it is – otherwise, there would not have been an improvement in the vomiting etc. 

I just want her back. 

She looked really good today though. 

February 2024 

February 1st 

Charity doing well.  Blood counts are back to normal.  Although she lost a session of chemo this week, she will resume on February 15th.  The oncologist said a little less chemo so her counts don't go down too much, and she should be able to complete the 3 “courses” of it. 

It is definitely helping – I knew it would. 

She is so tired though.  To me, it’s a sign of the cancer being very active.  Cancer cells require a lot of energy which is why you’re tired.  I am dreading the next “measurement”.  It could be that she is taken off chemo since the cancer knows no bounds.  That is the worst case.  Or it is helping so we will keep going, and see?  It’s pretty binary to be honest. 

Either way, this is coming back and soon.  I simply cannot sugar coat this.  My oldest son rang me last night.  His thoughts are she will not see his wedding in June 2025. I’m hesitant to admit it, but I think my initial guess of this August is probably true. 

Disaster. Tragic. Unfair.  Words I would use to describe this. 

But it is not over. However, as the writer Christopher Hitchen wrote “In whatever kind of a 'race' life may be, I have abruptly become a finalist”. 

True. 

My oldest son rang last night.  He has some issues with his ex-partner trying to use their daughter against him.  Disgraceful, and disgusting.  I told Charity about this.  She rang him.  She told him we have your back, and you’ll sort this.  See?  She cares more about others than herself. 

Charity’s message to James 

“Hi James thinking of you. Had a chat with your dad.  I know you can sort this. Let’s have a chat soon in the next few days if you’re up to it. Love to Monica and Arianna. Lots of love and a big hug for you. You got this. Love you lots” 

She is the strongest, most amazing person I have ever known.  And?  She is my best friend. 

February 2nd 

A good friend of ours (Charity’s ex sister-in-law's sister) was admitted to hospital last night.  She has an issue with a very low heart rate.  Therefore, a pacemaker is in order.  But serious stuff. 

Charity will no doubt worry about her – it's just her nature. I’ll go and see her this weekend and give her our love and best wishes etc.  They always visit Charity.  It’s the least I can do. 

Waiting for Charity to call me.  She was having her blood pressure taken when I called earlier. But I think she is ok in the sense there has been no vomiting. I suppose this means that whatever she is taking in is finding its way “through”.  The bowel obstruction must be clearing because of the chemo.  Simply must be? 

I’m going to see her today as usual.  I managed to handle work very well the last 2 weeks and am caught up. No major issues to deal with now – so less stress.  It was hard work to get to this position, but worth it. 

Carer’s note: 

Work doesn’t go away.  If like me, your company is entirely supportive in the sense of “Take all the time you need” ... that’s great of course.  But as said it doesn't go away. You need to come up with a schedule that works for everyone. Mine is, work in the morning, hospital in the afternoon, work in the evening.  It makes for a long day, but that’s what works for me. Having a routine is definitely helpful – and needed in my opinion. 

Back from the hospital. Work is back to being stressful and I needed to do stuff this afternoon – so only stayed for a few hours.  Charity has company anyway – so she is not alone. 

Charity's temperature was up again (38c). They sent her for a chest x-ray, then a CT scan. The nurse told me she was short of breath etc.  Paracetamol brought it back down though. 

Of course, I am thinking the cancer has spread in her lungs (it’s already there). I hope we get the results of the scan sooner rather than later.  But what were they looking for? A quick search says a chest CT scan can indeed detect lung cancer. When she gets up and goes to the toilet, this takes a lot out of her. You can see it. 

Back to thinking the worst.  

The nutrition at home people are coming tomorrow to do an assessment – whatever that means.  The plan could be that Charity comes home for next weekend.  But there are quite a few things that must be right by then.  She must be infection free for example.   

I better make the bed! 

February 3rd 

The day started off ok. The assessment person came.  He seemed happy enough with everything. He wanted to know where we would store the supplies.  I said under the stairs. He was fine with that. 

Charity called me and I told her about that location, and she seemed quite upset because we have a radiator nearby and it could get warm. She said she should have stayed on the phone to give him instructions.  I’m really tired of this micro-management bullshit every day from her.  I love her of course, but this type of thing is getting tiresome.  I make her toast and get criticised that it’s not buttered correctly. That kind of thing. 

Anyway, I sent her a message to say stop treating me like an idiot etc... 

I’m doing my best here.  Really, I am.  I wonder if people in her position understand the pressure, and strain others go through to look after them?  I highly doubt it right now. 

Back from the hospital – good visit.  We held hands as always; kissed and told each other we love each other – proper. 

Frustration! I find myself getting angry at stuff I shouldn’t.  Given the petty stuff above.  Why?  I think I know. It’s the unfairness of this and I am sort of angry at the world. 

But, as I said to my wife, I am past angry.  Maybe that has been replaced by something else?  Confusion?  I do not accept that cancer will win.  I cannot. But it is making its presence felt. 

Home Thursday, then back in the hospital by April/May? 

Can I ever take her away?  Can I ever go for dinner with my beautiful Charity?  If not, then, I will make her romantic dinners at home – if she can even eat.   

Fuck cancer. 

I am looking at the pictures I have of Charity.  Her, our wedding.  Damn.  We have gone places, made memories.  Like I said: I want more. She looks different now.  Still the most beautiful girl in the world... But it has all changed.  

I love her. Our halcyon days are gone – that is certain.  It is all about making her comfortable I suppose.  

Right now? I want more and can’t have it. I need to accept it and I suppose I have to.  But as said, the fight is not over... But damn, it’s the 90th minute and we are getting into injury time. 

February 4th 

Went to see my beloved wife today.  But first, I went to see our friend who is in hospital.  Had a nice chat with her and tried to re-assure her that the procedure she needs will fix this. Thing is, when people talk to you with stuff like this, you basically turn off? Turn off in the sense that they might think you are just saying stuff.  That’s fine, I tried to be fairly convincing.  I do know she will be OK though – and at least I represented my wife well today. 

My wife was good. She gets tired later in the day – but when she has some energy, she is just like her old self.  She’s actually funny. She always has been – very understated sense of humour.  But makes me laugh.  I get her. 

Her temperature has returned to normal.  This is good news. The next chemo session starts a week on Thursday (February 15th) so a good 10 days or so without infection will provide her a good physical foundation to have the next chemo. 

I am certain that the chemo has had a positive impact.  We obviously don’t know how much. 

All I want is for Charity to feel well enough so we can go away to a place she has always dreamed about.  Maybe it’s Barbados – where we planned to have our honeymoon.  Maybe it’s some other place?  

After chemo ends – it has to sometime – I need to ensure she will be strong enough to do just that.  And there is no point continuing chemo if she will just feel weak and unable to fulfil some dreams of hers.  Terrible decisions – but she needs to be able to live a little before Cancer has the final say? 

I want to know asap what the state of play is of course.  But let’s get the next 3 sessions in, and see?  

I had a good conversation with Michelle tonight.  Bitter reality yes but loads of understanding.  She really gets this. 

From my unbelievable wife. 

“I’m the luckiest woman and I’m truly blessed to have you in my life. I thank God for you. I’m blessed beyond measure” 

Don’t know what to say – other than I love her. 

I did say: 

“Remember, we are going to Barbados this year... something to look forward to” 

Response: 

“Yes, looking forward to that🙏🏽❤️❤️ “ 

I need to give her something to look forward to.  That this isn't the end.  That there is hope, that there is light, that there is love, that we can be ourselves one last time? 

Let’s hope so.  I need one last time with her.  Maybe it will be a few times... But right now, one seems enough? 

I'm trying to recreate a new reality in my head about our wedding reception – which is ridiculous.  I just wish I would have said more. 

Note: 

Always, always say what you feel.  You will regret it if you don’t. I do. 

February 5th 

Charity had a good day today.  She tires later in the afternoon though.  But it is nice to see her smile and laugh.  Her attitude and positive thinking are quite amazing. 

I’m having a harder time with this now than in the past.  For some reason, it is really starting to sink in.  It’s always been like it is happening to someone else – that this cannot be possible. But it is. I just don’t know.  I love her so much and this is going to hurt like hell for the rest of my life. 

One of Charity’s cousins was there today, and we had a chat while Charity went to the toilet. She asked me who helps me?  I said no-one.  But I did say I call the MacMillan support like every now and then and chat to my sister and a mate of mine, and of course Charity’s cousin Michelle. 

I said I cannot look into the future.  I can’t bear it. She simply said that the future is not your reality right now, so don't even bother.  Good advice! 

No news yet about when Charity can come home.  Maybe tomorrow we’ll get an update? 

That will be nice. 

February 6th 

Work is insanely busy right now. I’m finding it a little difficult to keep up. I’m just not as productive in the evenings. It makes for long days and with all the pressure right now, it is a little hard – but I’ll get there in the end. 

Charity slept well last night. It looks like she will be coming home Monday or Tuesday. A little confusion over when the next chemo session should start. The hospital appointments say February 15th -- but we think it should be Monday? Generally, though, it happens on a Thursday for outpatients.  The pre-requisite for her coming home is of course the "food" and setup at home etc. That needs to be done, and still waiting for confirmation when they will deliver it. 

I will go down to the Hospital as usual around 1pm or so. 

As an aside, King Charles has been diagnosed with Cancer.  They didn't say where, type etc.  They simply said it’s not prostate cancer. However, it was discovered during treatment for an enlarged prostate.  hmmm... sounds serious imo.  Well, when is it not?  Just re-enforces how evil this disease is and no-one is immune from it.  It does not discriminate. 

Just about everyone has been touched by this awful disease.  When are we going to get this cured? 

February 7th 

Charity had a good day today.  Of course, still getting tired in the late afternoon.  But there is no nausea, no vomiting. She has had some soup and strawberry jelly, and that has not had a negative effect. 

We will know tomorrow when she will come home.  Right now, Monday is a possibility.  I’d rather she had chemo in the hospital on Monday, then come home Tuesday.  I have a Europe-wide meeting I organise on Thursday – the usual chemo day – and I missed the last one. It would be good to not miss this one and then I can reschedule the upcoming ones accordingly. 

A balancing act of course. I’m still managing to get work done. This schedule is pretty good actually. 

If all goes to plan, then chemo once per week for 3 weeks – then tests to determine the effectiveness of it.  Let’s hope it does what it is supposed to do.  

I want time with her. I told her today.  “I want to take you away and spoil you!” 

That should not be too much to ask. I love her.  I know I've stated that many times in this diary... It’s just that I really, really do. 

February 8th 

Charity looking and feeling well this morning.  Am I allowed any hope after all? 

I think the worst, then get a glimpse of hope. This is what makes this journey so unfair. You don't get a chance to really “adjust”. Down, up, down, up...  I maintain though, if we have this year, then I will be happy.  A proper goodbye – just to enjoy our love one last time.  As I said yesterday, to take her away and spoil her.  That would mean the world to me.  And make her know – she does – how loved she is.  

I have some work I need to get done this morning and then off to the hospital.  Hopefully, there will be decisions made on the next chemo today. 

Charity had another good day today! Looks like chemo will happen as an in-patient on Monday – and home on Tuesday. I re-read the Oncologist’s last letter to the GP, and it mentioned she can have 9-12 session of chemo depending on response and side-effects.  Surely, that will kill this new cancer? 

But what does it do to my wife? 

Let’s say it goes the maximum of 12 sessions.  That’s a total of 36 weeks of chemo once per week.  A total of 48 weeks if I count the week ‘off’ for recovery. 

48 weeks from now is the end of this year.  That is a lot to bear for her.  Let’s hope a few more sessions and some type of remission happens, and we live, then deal with whatever is next? 

It gets to the point where you say, “This is not a life... let me live just a little so I can remember what it was like.” 

Patients note: 

If you ever get to this stage, do not think you are letting anyone down by deciding to stop chemo and live.  We were made to live – and love.  We were not made to try and survive against hope.  Your loved ones need you too – and try and be with “you”. 

Stage 4 almost makes these decisions for you.  Now, everyone is different, and every situation is different. Just do what makes YOU comfortable. 

I cannot wait until Tuesday – Charity coming home!!!!! 

Chemo as an in-patient Monday.  Home Tuesday. Wow.  Cannot wait. 

I get to hold my wife.  My beloved, my beautiful wife.  I am so excited!!! 

February 9th 

Good news.  Off the anti-sickness. Off the morphine and feeling and looking good.  Chemo on Monday.  I can’t make it today because of work commitments. Hopefully some can? 

Why can’t she be here now?  So, I can hold her? I understand of course.  It just hurts. 

February 10th 

Went to see Charity today.  She is in good spirits.  I think the thought of coming home on Tuesday is helping her.  Nothing quite like your own bed of course... and we get to hold each other.  That will be amazing.  I simply cannot wait.  To have my beautiful wife here and close to me is something I love. I love being with her – seeing her laugh. 

I suppose chemo starting again on Monday is also helping her. She knows that something is being done to kill the cancer. So, it’s all good.  Well as good as can be. 

Three weeks of chemo then decisions.  Dreading that to be honest.  Best case?  A good response, so let’s have some more chemo.  The worst case is of course, halting it.  And we know what that means. 

Anyway, one step at a time etc. I do believe the chemo will have a good response. It simply must. 

February 11th 

Well, a few more days until my beautiful wife comes home! Very excited. 

Chemo begins tomorrow and Charity looking and feeling well.  She had a very good sleep last night.  So, once again ready to meet this head on as she always does. I tell you this. She really is fighting this awful disease with everything she has got. 

Staying positive, smiling, laughing. It must help. 

Patients note: 

Always stay positive. I know it can be hard – or even impossible at times.  They key is not to look into the future. It’s (the future) not something we can control. Live for today, enjoy your friends and family. Looking at what will happen in a month, 6 months a year... really doesn't help.  It will just cause you anxiety since by our very nature, we start to think of negative things. At the end of the day, we don't know what will happen in the future. So why even bother? Why put yourself through something that will just lead to negative energy? 

I am looking forward to seeing my wife today.  I think the fact she is coming home is making me a lot more positive. When she is in hospital, I am a little lost.  It’s hard to explain – it’s just that something is not right.  The house is empty, the bed is empty, and I have a hard time even wanting to go to sleep at night. She’s not there.  

If this disease takes her from me, I suppose it would be different. Just a different type of pain – and a different level of pain. I know that I will be able to deal with it. I’ll have to. 

When my late wife passed away (Glioblastoma), I had 2 young boys to look after.  I had to get them off to school, make lunch, pick them up, then take them to football practice. It meant busy days. They were my sole focus.  I didn't really have the time to understand and process my loss.  

Of course, not grieving properly is wrong.  Years later it affects you. It affected me. I realised that it was wrong for me to just get on with life back then.  Of course, my boys had my focus and rightly so. But I should have stopped and grieved. 

Had to do some work this morning. I think I’ll have a nap before I go to the hospital. I also must get some washing done. 

I need to look out some clean bedding. I will do that today and change the bedding tomorrow. I want a nice fresh bed when Charity comes home.  

I had a lovely visit with my wife.  She’s looking good – seems to have more energy as well.  We go for a walk around the floor of the hospital and her walking was good.  She still gets very tired later in the afternoon, so I find my visits ending around 4:30-5:00 since she just wants to sleep. 

Chemo is going ahead tomorrow – haven’t heard otherwise, so as far as I know it’s on. 

When Charity feels good – and looks healthy – I start to have hope she is going to beat this.  Of course, I know there is only an outside chance of this, but I do have hope. As stated, a few times, just give us this year – please. 

If we get more than that, it’s a bonus. 

This is what I mean when I have said you start making “deals” with cancer. 

Everything is dependent on the next 3 chemo treatments. I will need to be patient of course.  I want to see progress, but that is impossible without the CA125 blood work and a CT scan – and that needs to wait until the 3 sessions are over. 

I am going to remain hopeful. 

February 12th 

The nutrition came today – all 24 boxes! Seems an awful lot. Anyway, it’s all in the kitchen and we’ll leave it up to the nurse and whomever else is coming tomorrow to sort it out.  Different size boxes, IV pole, pump (for the nutrition). It cannot be straight forward. 

I’m quite sure though that they will make it look straight forward. 

Chemo will start today – and I’m going down there now.  Finished making the bed!  Just need to put fresh pillowslips on.  But all done. I will tidy up Charity’s side of the room a bit and ensure the bathroom is also clean. 

February 13th 

A very frustrating day today – on multiple fronts. Charity rang about 10:30 saying they wanted her home because of the nutrition set-up by 12:00. She was still connected to the nutrition at this time, so this clearly doesn’t leave a lot of time. 

I went down immediately – and we managed to get discharged and home by 12:00!  Excellent. Except that the hospital and the nutrition provider had a mis-communication and nothing happened.  Inexcusable. Anyway, they had a nurse come by and hook up the nutrition for tonight and they will do the rest tomorrow. 

This is a procedure that needs to work.  OK, she could have mashed potatoes – and I did make her scrambled egg – yes 1 egg which she ate. But... It's supposed to be “proper” nutrition. 

All good for now. 

I am so busy at work – and needing to balance all of this is making my temper short. I just never have enough time it seems. 

Tomorrow is a new day and let’s hope the nutrition goes smoothly. 

I was reading Charity’s discharge letter.  The cancer is no doubt in her Liver, and I get the feeling from the letter, it’s more there than her Lungs.  I could be wrong, but it did not sound or feel even remotely re-assuring or hopeful. 

February 14th 

Valentines day! But of course, no plans...  Just need to get through the day.  The Nurse came this morning at least and stopped the nutrition and cleaned the lines etc. It does seem fairly uneventful. 

February 16th 

Did I say uneventful? At 2am Thursday morning, the alarm went off.  Depleted battery.  I rang their emergency number and was told just shut it off since they don’t really know how to change the battery etc. 

Well, it seems when you start the infusion, the battery pack has a power button as well.  If that is not pressed, then it falls back to some 3.5V battery as a backup which of course, only lasts a few hours. 

My blood pressure must have been dangerously high.  Seriously.  We received a new battery pack that does not have this idiotic power on button to be pressed. I don’t really blame the Nurse since the packs look similar – but a little different. 

All fixed now. 

Charity has a rash on her legs that is itchy. I know the cancer is in her liver now – and was mentioned on her discharge letter as “Hepatic Metastic” disease.  One of the side effects?  Itchiness.  or it could be just a reaction to chemo.  Doubt it though. 

The good news, the little she is eating (it’s not for nutrition purposes, it’s to see how she copes with solids) is staying down and not causing any nausea. Mashed potatoes and soup only.  At least that’s a plus. 

We got out for a walk yesterday – she did well.  More today.  We must take advantage of some good weather in London right now.  It was 17c yesterday and around 15c today – and sunny mostly.  Unusual... but we’ll take it! 

Getting out for a run today.  Since Charity was in hospital (5 weeks!), my schedule was crazy.  So, getting back into my usual schedule thankfully. 

Pretty easy day today.  Charity ate some mashed potatoes and gravy her Mum brought over, plus an apple I sliced up for her.  She seems to be coping with that.  Good. 

We clearly can't resume a sort of normal life while this is ongoing (the nutrition) etc. 

We had confirmation that blood and chemo Monday and then next Monday. Of course, after that is sort of D-Day.  How much has it helped, and does it make sense to continue? 

I think it has helped of course otherwise the bowel obstruction would not have improved.  I suppose they have their “measurements” and their own expectations.  Even if it has improved, if not by X%, then what? 

February 17th 

Charity was crying a bit early hours.  I asked her what was on her mind.  She just said she had a bit of a “wobble”.  Whether it was about her daughter, or her own situation is unknown.  I reminded her that I am her husband and love her – and lean on me.  Don't put on a brave face.  It’s fine to be upset, to feel let down by life. 

This (brave face) is in her DNA though. It won’t change.  But at least she knows I am here for her.  I will always have her back.  I love her – quite simple really. 

The nurse came this morning to unhook the IV (nutrition).  I bought some drawers and started to put away all the stuff that came the other day.  But I need more drawers!  Amazing amount of things that you need for this nutrition.  

It’s now getting routine – good! 

Charity wants to visit the cemetery to see her daughter.  Hopefully one of her sons will take her. 

We don't have a car.  I can’t justify it.  In London, the public transport system is amazing.  Having lived in other places, I can appreciate just how good it is.  But people here will always complain about it.  That, the weather, everything I suppose.  Is that human nature?  I hope not. 

Going to try and go for a run down to Warren Street today – just to see how much fitness I’ve lost! Time to get it back. 

Patient’s note: 

I’ve said it before, but I’ll say it again.  When you put on a brave face it is not helpful for you – or others that love you.  Trust me:  We can see right through it.  We understand – or will at least try to.  It’s hard for us too.  Very hard.  Just let us love you and care for you. Now, that can’t be bad?  Of course not.  Stay strong, yes.  But being upset, crying, feeling down and low is ok.  It helps.  And?  It heals. 

Carer’s note: 

If you are caring for your partner/spouse, you must be prepared that your relationship will change over time – and this could be permanent.  Where your relationship was built on making memories and certainly planning for holidays, or even retirement, it is now focused on one thing. Cancer.  Every discussion – so it seems – every waking hour, is spent dealing with it.  Whether you are dealing with upcoming appointments, current health issues, worry, financial issues and so on, the focus – for the most part – is no longer on the relationship that brought you together.  This takes time to manifest itself – but it probably will. 

Now, everyone and every relationship is different.  I am simply giving you, my experience.  We are very much in love – but the focus of our relationship is very, very different.  

Be prepared for this. 

I will go for my run tomorrow. Feeling sort of run down today.  Maybe it’s the lack of sleep. But tomorrow will be fine.  Knowing my luck, we will probably have torrential rain! 

February 18th 

About that torrential rain.  Yes indeed – it arrived.  But it subsided and got out for my run today.  I clearly have lost some fitness, but overall, quite pleased.  I don’t think it will take me long to get back to where I was. 

Charity wanted bacon this morning – so I went to Tesco and bought some.  I made it and put some honey on it (by request), a little light toast and she ate most of it (3 slices).  All good.  Then she had Sadza and Okra for lunch – and that was ok. Then, some tomatoes and cucumber salad – also all good. 

If the bowel obstruction was causing an issue, I assume this would have been an issue. Perhaps proof that this is being taken care of.  Only proof I have. 

See? Chemo works.  It really does.  Of course, for how long etc. But enjoy days when things are good.  

We also went for a bit of a walk as well.  A good day today – let's keep this going!  

Oh, and The Rangers are now top of the league – even better! 

One last thought for today. Why can’t they deal with the toxicity? It’s 2024! Maybe they have given that up – maybe it was never a real possibility?  Maybe the research money is going to immunotherapy?  I have no idea... But for goodness's sake, let’s cure this! 

February 19th 

Just back from chemo. They did not have the type of blood test Charity needed on the system, so we needed to wait.  They sorted it out and when we got upstairs, they said they couldn’t locate the blood.  So, another blood test done in the chemo day-care unit.  This just meant a delay.  It is now close to 20:00 and we should have been back by 5pm. 

What have I been saying about delays?  Get used to wait – and mix-ups.  We can’t really complain though since throughout this, things have been pretty smooth.  Credit where it is due etc. 

Charity made herself more bacon this morning and had probably half a sandwich this afternoon.  I keep asking her “How are you?” (About the food intake really. Is she feeling nauseous etc?)  I know she does not tell me how she really feels which is why I keep asking I suppose.  Anyway, I was told to stop asking. 

Fine by me. I won’t ask how she is anymore lol.  Seriously.  I get the point.  It is annoying when you are sick when people keep asking “How are you?  Are you OK”.  Yes... but I’m her husband and I know she does not tell me truth about it.  So, I ask. 

No more. Learned my lesson there it seems.  

As an aside, I see lots of people in chemo day-care by themselves.  Sad really.  The only time Charity is alone is when I go out to get her something to eat. She is never really alone.  

Carer's note: 

This is important.  Your loved one needs you there.  Can you imagine being in chemo day-care which is essentially like a gymnasium with many people looking awful with IV drips hoping to improve their life, extend their life, perhaps just clinging on to hope?  It is not a joyful experience at all.  It is full of worry – and dread.   

Of course, there is hope as well, since something is being infused that could very well lead to a positive outcome – and that must be the mindset.  But let’s face it, the fact that your loved is there is not good at all – and a constant worry. 

Everyone deserves as much support as they can get – and chemo day-care is one of – if not the most – important place to show it. 

Be there!  

February 20th 

Nothing much so far today.  Quiet really.  Work is quite different! Charity starting to eat more regularly with no side-effects.  I suspect the chemo side-effects might appear today or tomorrow.  There is probably ¼ or so of the dosage than she used to get – but now getting that ¼ on a weekly basis for 3 weeks.  I am not sure if that will lessen the side-effects?  We'll see. 

Her hair has fallen out (again) though. Poor girl.  Really.  Going through hell for almost a year now. 

She mentioned today that she is holding off getting her daughter’s gravestone sorted.  The reason is obvious.  She thinks she will be joining her soon. 

And then it would be up to me and her Mum to finalise that.  I told her we are a long way from that and of course, no matter what happens, things will be done right. No problem there. 

She was crying.  Heartbreaking. 

Charity is feeling well enough to cook!  I thought I had upped my game cooking-wise in the last while.  But no comparison to her.  She – legitimately – is a great cook.  She made Sea Bass prepared in the oven with onions, tomatoes, and olive oil.  It was fantastic.  It puts my “cooking” to shame.  A bit of a let-down for me since I actually thought my cooking tasted good! 

Anyway, the real point here is that she is well enough to do this.  Let’s hope these little improvements continue! 

February 21st 

The “pump” that runs the nutrition line was beeping most of the night.  “Downstream occlusion”.  Just means something is blocked below the IV. Generally, the line is “kinked” etc.  But a visible inspection showed nothing.  This was always my fear.  Something will go wrong with this and last time I checked, neither of us are medical technicians, nurses and so on. 

Anyway, we just let it go. 

I feel that Charity will get off of this reasonably soon?  She also had some of the Sea Bass last night and is doing well with eating.  She is re-introducing solids gradually – as by design – and it is working out. 

We had a call to schedule a CT scan.  We agreed on tomorrow since Friday morning is busy for me.  The person that called said this was urgent – when asked about the change of the usual location. 

Is it urgent because the Oncologist wants the results before our face-to-face on March 12th?  Is it urgent because, well it is URGENT? 

Either way, having Cancer at this stage is extremely stressful. Why the fuck make it worse by even mentioning it is urgent – without specific reasons as to why?  I swear, there is little to no thought sometimes. This might sound crazy, but at this point, jobs like that (admins that deal with scheduling) are better handled by AI.  I am not joking. Very pissed off with this right now. 

For what it is worth, Charity doesn't seem too bothered by it.  She just thinks it is to ensure it gets done.  That’s fine and might be the case... but no need to mention “urgent”. 

February 22nd 

Well, we went down to the hospital for te CT scan.  And?  It was booed “too early”.  So much for it being urgent.  Nothing happened and it was re-booked for March 5th at 09:00am. What was I saying about AI being a better solution than some of this incompetence.  And it is.  Why have someone with Stage 4b cancer get into a taxi – spend £55 there and back for nothing? Of course, I paid – but let’s say money was very tight? 

And another £55 on the 5th?  

On the way down, I noticed there was a CA-125 result from January 2nd. This is before the bowel obstruction and pre this chemo treatment. It was 609.  I’m shocked.  Remember, before Charity was diagnosed last May, it was 466.  And after surgery and chemo, it is 609? 

There is no chance I am telling Charity this – and I hope she doesn't check out the results. It is a shocking number.  Even if this chemo cycle gets it down, by how much, and how long will it last?  Not long.  The pattern is pretty clear now – and it’s devastating. 

I suppose this is the first time I have fully recognised that this Cancer is not going away – it is here to stay and ruin our life. 

While Charity is feeling fine, she is very tired.  How much of that is the chemo, and how much of that is the cancer?  Cancer cells require far more energy than normal cells – hence the tiredness. 

If the number after this cycle is +400 or so... what will the Oncologist do?  Chemo may have helped the bowel obstruction, but that count is a massive number. I suppose this will be the main talking point on March 12th.  That is a little less than 3 weeks away.  One more chemo session, the CT scan, then the face-to-face. In my calendar, I have that meeting as D-Day.  It is. 

On another note, payday tomorrow, which includes a bonus.  I should be happy, but this CA-125 reality just sucks the life out of you.  I need to remain hopeful though.  I must. 

February 23rd 

Charity is downstairs cooking – a good sign! I asked her when will she baking a cake because the world needs to know!  As I have said in various parts of this diary, she is well known for her baking.  It is something she enjoys and of course, it is quite an active thing to do. 

The nutrition seems to be behaving itself. A few more weeks then off of it altogether?  Once she is off that, and feeling “OK”, then I’ll definitely take her away somewhere – maybe in the UK – and spoil her rotten.  Now, that would be nice. 

Other than work, a quiet day – no hospital appointments, no scans and so on.  Just pretty normal – which is nice. 

As for the weekend ahead.  Will try and run down to Paddington. I am slowly getting my fitness back.  I need to keep it going. 

I am not sure what Charity has in mind.  She is not energetic enough to really do anything.  Perhaps some will come to visit. 

We’ll see. 

I think I’m just in some type of “holding pattern” until March 12th. I doubt much – if anything – will change before then to be honest. The last session of chemo is on Monday and after that, the scan a week later, then the Oncologist a week after that. 

Work will keep me busy of course.   I know I complain about work and so on.  But to be fair, it’s a good place – a fair place – with genuinely nice people that have supported me.  I do appreciate that.  Sometimes a moment of reflection is needed in order to see that in actual fact, I am quite lucky.  I know I am with the woman I married.  I still cannot believe that!   

But when all is said and done, I consider myself fortunate to have the life I have had.  I am not rich – never will be – and I have had plenty times when money was scarce.  But I have ended up ok, my kids are ok, I am proud of them and love them. 

I just wish things were different with my darling wife, and we could fulfil our dreams.  I know in my heart that it’s probably not meant to be.  But I consider myself lucky to have known her, to have loved her and to be loved by her.  I will continue to take care of her, to love her, and each and every day, make her feel special. 

Isn’t that what we are supposed to do?  Of course, it is. 

February 24th  

Nutrition nurse came round 7:20am today – np with that.  It gets Charity disconnected early.  I made her 3 slices of bacon with a little honey on it at the end of cooking.  She ate it all. 

The chemo must have fixed – or at least vastly improved – the bowel obstruction otherwise she would not be able to eat. I suppose she’ll finish chemo and then they will decide on whether to continue with the nutrition? I suppose they want to err on the side of caution.  But I want an objective assessment.  not just “Well, you should be doing this for x months”.  Sorry, but that’s bollocks.  If you are well enough to eat normally, then eat normally. Do not put everyone in the same box. I’ll use their words.  “Everyone is different and reacts differently” – so treat them as individuals, not just what the “manual” says. 

I fully expect Charity to come off of the nutrition in 2 weeks. Let’s save the NHS some money as well.  The amount of material that is necessary is astonishing.  And of course, there will be no re-use.   

Hopefully, off for a good run today.  Weather is sort of ok. I ran last night. Cold and wet and dark!  Now, that builds character. 

February 25th 

I did go for my run yesterday.  I made it Warren Street without much of an issue.  My fitness is now about 90% of where it was.  Very glad about that. 

Carer’s note 

I've said it before – but will re-iterate.  You must take care of yourself.  Getting out for a walk/run should be mandatory. You need to be fit, aware and ready for the unexpected when you look after someone.  It is not selfish to do this.  It is a must. 

I made Charity breakfast this morning.  It seems she is love with Bacon now for some reason.  So, that and a slice of toast and tea.  She is doing fine with eating.  We will approach the Oncologist/Dietary team to see about reducing the “TPN” to either every second day or just Monday to Friday. Maybe they will wait until the scan results – fair enough I suppose. 

Oh, and The Rangers won 5-0 yesterday and Scotland beat England at the Six Nations for the fourth time in a row.  A good day! 

I’m not sure about today – I feel like another run.  However, I will probably just go to the Fishmonger and pick up some other things we need. 

Things are pretty calm at the moment. 

“Calm before the Storm?”  Maybe.  Cancer – and the effects, worry – never, ever leave you.  You just have to accept it.  Accepting it makes it easier to deal with of course. 

I went out to get some fish – there's actually a good Fishmonger just down the road.  As I was standing there waiting, it occurred to me that I have nothing “figured out” here.  Nothing.  I know what is coming of course, and I sort of have a plan in my head of how to deal with it.  On running through that in my head however, I realised that I have not got a clue on how to deal with the loneliness, darkness and pain that will be there.  I better get a grip on this.  The worst thing that can happen is to be emotionally unprepared.  And right now?  I am totally unprepared. 

Carer’s note: 

As cruel and difficult as it is, you need to work on yourself to understand how you will deal with the passing of your loved on.  You simply cannot wait until that awful time.  Get some advice from professionals – grief counselling – that sort of thing.  If you leave it too late, you will do yourself a disservice and let’s face it, your loved one will want you to be able to cope with it.  It is not a weakness to be prepared.  It’s sensible and just might, help you to live. 

Also, get used to these seemingly random thoughts entering your mind – “picturing” a life without your loved one. It happens to me all of the time.  I believe it is a way of coping – and a way our brains are telling us to be prepared. So, listen to yourself?  We can give ourselves good advice as well. 

February 26th 

It is the last chemo session of this cycle today.  Blood work is scheduled for around 2:15, then chemo at 3pm.  It takes about an hour and 15 minutes for these sessions – opposed to the 6-7 hours last summer. I haven't seen any side-effects from this new weekly treatment other than Charity’s hair. 

Note: 

Do not underestimate the effect this has – especially on a woman.  Men I suspect are probably not too bothered by it (I could be very wrong of course because some will be).  But women for the most part will be.  Be sensitive and caring. 

February 27th 

Actually, there is a side-effect. Charity’s feet (peripheral neuropathy) are getting worse. Her fingers seem fine – that has improved.  She is concerned that they will stop chemo because of this.  It is something that the Oncologist will consider – side-effects. I seriously doubt that the current issues with her feet will have an adverse impact on the decision making.  Surely, it’s more about the response first, side-effects second? Or am I being overly-simplistic? 

Charity is doing reasonably well though.  She is getting her own food – cooking a little and looking well.  Amazing.  She really is. 

One week today is the CT scan that will tell the Oncologist what the response is – along with another CA125 test I would assume.  That meeting on March 12th is on my mind a lot. 

I have a Dr appointment myself today.  I had an operation on my ear last August.  A complete waste of time.  I have discharge coming out of it and probably need another op.  I need to know why...and what are they going to do to fix it and improve my hearing.  Pretty pissed off at that situation. 

Think I’ll run back from there.  That will be a good use of time. 

February 28th 

I didn't run back yesterday.  The Dr said I had a polyp in my ear.  he put some “chemical” on it to burn it off.  He suctioned out my ear and so on.  Not pleasant.  So, I just took the tube back. 

Anyway, went for a run today.  So, all good on that front.  

Charity doing well.  Getting up making herself some bites to eat.  But very tired.  Chemo + Cancer = Tiredness.  Hopefully she will have more energy soon – the issue is that we don't know what he true state of play is and what lies ahead treatment-wise. 

She has infusion appointments all the way to the end of May.  These must be placeholders I assume. 

The scan is on Tuesday, and a face-to-face with the surgeon on Wednesday. I assume the surgeon just wants to examine Charity since it is now 5 months or so after her surgery. 

The surgeon is a lot more forthright than the Oncologist though.  She will of course have access to the blood work from January (the CA-125 number being +600).  Of course, it could have come down now and probably has, but I wonder if she will offer an opinion.  Maybe, maybe not. 

On another note, Formula-1 starts tomorrow.  A real indicator that springtime is not far away! 

March 2024 

March 2nd 

March already! The weather here in London feels like it is the middle of December.  Cold, wet and overcast all the time.  It doesn't help to elevate your mood.  

Charity baked a cake yesterday – and she always makes muffins with the same mix.  Delicious. I’m not just saying that, the muffins really are. 

This is good since she is up and about – but it makes her tired.  But it is still beneficial for her to get out of bed and do something she loves.  And, I get the benefit of her baking! 

If you didn’t know her, other not having hair, you probably would not be able to tell that she has Cancer. That is one of the difficult things. She looks fine.  I cannot believe the evil happening inside her.  We can’t see it of course – but it is growing constantly.  Getting ready to do whatever evil it will. 

Note: 

This why you must get checked for Cancer. Women, men, young and old.  We cannot see or even feel Cancer in many cases.  Early detection is always key.  It is the best chance we have to surviving a diagnosis.  Don't wait until it’s too late.  Chemo works, but it won't “cure” anything in an advanced stage of course.  Early detection – treatment, is always our best chance.    

Charity had no idea about this until it was Stage 4B.  Case in point. So please, please get checked.  For men, get a PSA test.  It’s simple, painless and is a clear indicator of Prostate cancer. Do it.  For women, of course, follow your GP’s advice on regular check-ups.  Don’t let it slip – and any physical issues you think are minor, don't think they are.  You come first and use the services available to you to stay ahead of everything.  The goal is always to enjoy your later years in good health.  You’ve earned it.  Don't let Cancer get in the way.  Help yourselves. 

Today will be a relaxing day.  (Well, it spends on how The Rangers get on of course!). But it will be.   

I will go for my long run tomorrow – hopefully down to Paddington again.  I also have a little work to do which I will prepare for now. 

The nutrition regime is well under control now and working efficiently.  Charity is able to eat though and as previously stated, hopefully she will be off of this fairly soon. 

On another note, we (Charity, her son and myself) are planning her birthday party.  It will be a fairly large affair (70 people or so).  We will need a venue that has bar service (no way I’m footing the bill for an open bar), and we will get a caterer we have used before.  I doubt anyone will contribute to this.  I don’t mind paying, but hopefully her Mum will contribute something?  It’s only fair in my very humble opinion. 

Ah well, she is my wife and of course, I have no issues paying.  It’s just my Scottish side coming out! 

March 3rd 

I made a poster for Charity’s upcoming birthday celebration.  She wanted an African theme. It looks like I delivered.  Quite nice to be honest. It will be sent as a WhatsApp message – but I've also ordered a 4”x30” print of it which I will frame.  I will hang it up at the party, then in the house.  It will look very nice! 

Charity baking scones now.  No idea why – but will look forward to having some! 

It’s a reasonable day weather-wise in London today – but cold.  At least it is sunny! I will go for my long run today. I was planning on Paddington – but will see how I feel when I get to Warren Street. 

March 4th 

The whole week is supposed to be sunny.  The temperature is not going above 12 though – but will take that compared to rain.  I will try and get Charity out for a walk daily.  Sunshine and a walk will do her good. 

CT scan tomorrow – and the surgeon check up on Wednesday morning.  Other than that, nothing scheduled test-wise, scan-wise, doctor-visit-wise.  

A week tomorrow is the truth though. CA-125 (probably not ready for that meeting) will be down, it has to be.  But to what exactly – and what does it mean?  My prediction last time was wrong.  But this is so soon after chemo, that it must have gone from 609 to... 200-300?  That is still a shocking number.  We’ll see but if it’s < 100, I will be shocked.  Please but shocked.  At what point do they say... “Sorry but the chemo really isn’t helping and...” 

That is on my mind.  I’m sure it’s on Charity’s mind as well – but not something we discuss since there really is no point in conjecture.  All guess work.  Educated guess work but guessing just the same. 

Ok, more work to do... but going to try and take my wife for a walk now. 

March 5th 

Charity had her scan this morning.  The usual 5 minutes – nothing to it. 

A quiet day though.  Charity made herself some liver – yes that’s right, liver – and ate that. She also had an apple, cheese and a wrap with chicken, tomatoes and cucumber. 

We are waiting to see what is happening with the reduction of the TPN (nightly nutrition). Hopefully, nothing Thursday night, and off for the weekend, then back on Monday night. 

That’s about it for today. 

March 6th 

Sometimes, work just gets in the way.  It’s unavoidable but a real pain.  It’s just as well that Charity is doing ok at the moment. 

The meeting with the Oncologist is fast approaching and I am wondering if I need to ask Charity how she’s feeling at the moment. She very well might want to talk but maybe doesn't want to open up in case she is afraid, concerned... and does not want to show it. 

A difficult one. 

I’ll let it be for now and just see what happens over the next few days. 

March 7th 

Another quiet day home-wise. They were supposed to start Charity on a different schedule for nutrition.  Off Thursday, off Saturday and Sunday. Today being Thursday and? Nothing.  No news. So, I suppose on tonight as per usual – but hopefully off for the weekend.  

The Rangers are playing Benfica away in Lisbon tonight.  I’m nervous as can be.  if we can take a 1 goal deficit back to Ibrox, I fancy our chances.  Charity will watch the match with me. Football should be fun to watch – for me? I get far too nervous and will follow on my phone from BBC text.  Sad state of affairs – but something normal! 

Charity baking again today!  This is good for her.  Baking is not easy. Lifting this, doing that, stirring mixes, the constant walking about the kitchen...  Good exercise in my opinion.  

I’ve decided not to bring up the Oncologist appointment for Tuesday.  if Charity wants to discuss it, the she will raise it.  Quite certain of that. 

Patient’s note: 

I know it is difficult sometimes to share your inner-most feelings – and of course fears. But please remember, it can be very helpful for you to talk about them. You are not alone in this fight. 

Carer’s note: 

If your loved one wishes to talk – do a lot more listening than talking. This is about them – not you.  Be supportive and loving.  That is your role in this.  That alone, will be more helpful than you realise. 

March 12th 

Today is the Oncologist appointment.  It’s a very big deal.  We have not discussed it at all.  Nothing.  Not even a hint. I suppose that’s how Charity wants it.   

How do I think it will go? 

Chemo has had a positive impact – the bowel obstruction has been cleared 

There is increasing evidence of it spreading through her Lungs/Liver and...? 

Chemo will continue. 

That’s probably about as objective as I can be – it's really how I see things. 

On another note, it was Mother's Day on Sunday.  It coincided (almost) with my birthday on Monday.  Charity organised a big get-together for friends and family and even got my youngest son down here from Birmingham.  What an amazing woman!  It was a really, really nice time – and I received a nice birthday cake too! 

Chemo has ended 

March 13th 

Well, I got it wrong. Chemo has helped the bowel obstruction – but not the Liver or Lungs – where it has grown.  Some “lesions” are double in size.  Still small, but double in size. 

Chemo has now ended. 

The Dr has put Charity forward for a clinical trial at St. Barts and we received confirmation of an appointment next week for a fact-to-face consultation.  This is the last chance. 

But, it’s a chance. 

I suppose I’m not really surprised given that shocking CA-125 number back in January.  But she has been well, no visible signs of lung or liver issues and so on. Still though, when you hear the words, that “chemo is no longer working”, it’s quite a lot to absorb. 

I still feel that this is happening to someone else.  I am not in denial – and I know exactly what is going on.  Maybe it’s just a self-defence mechanism we have.  We know, we see and observe, but it’s like watching a movie of it all? 

Let’s hope the new treatment starts ASAP and she has a positive effect. Running out of time.  We’re both still hopeful but time is not our friend. 

The drug – assumption, but almost certain – is called Pembrolizumab. Signs are very encouraging. Surely immunotherapy is the way forward anyway.  These poisonous prehistoric chemo drugs are a thing of the past.  Yes, they work, but the brute force and ignorance approach is ridiculous?  After the trillions that have been spent? 

We’re smarter than this... Our bodies must be taught how to kill the disease. Well, we’re going to find out just how good this drug is.  And we’ll find out soon enough. 

I’m feeling quite positive about it.  I suppose it’s because it’s (finally) a modern approach to this – and what choice do we have? All we have is hope.  Despair is not on the menu. 

March 14th 

Reasonably nice day so will get out for a walk with Charity.  She mentioned last night that she’s concerned about time – i.e. the time it will take to get started with the Immunotherapy. With the recent news about the growths, time is of the essence and she is worried it will be too late. The trial needs to start asap, and we need to get a feel for results – also asap. 

What have I said about this journey?  You wait, then wait... And wait some more. 

I suppose if you’re rich, with the ability to get private health care, it’s different. But for the rest of us, waiting is just the reality. 

I doubt King Charles is waiting for treatment?  Not his fault of course.  It’s just that there is a multi-tiered system in place.   I suppose that’s just the way it is. 

Now, we wait until March 20th. That is six long days away. 

March 15th 

Not a lot going on. I paid the deposit for Charity’s birthday party last night.  At least that is done. In other news, I have a dentist appointment today.  As you can tell, there really is not a lot happening. 

Just the usual waiting game. 

March 16th 

I saw on TV that cancer deaths have been reduced substantially.   

The author of the following quote is often attributed to Mark Twain (and perhaps others...). A true statement about lies and statistics. 

“There are three kinds of lies: Lies, Damned Lies, and Statistics” 

Is there some type of new wonder-drug they are not telling us about?  Of course not. As I have mentioned in this journal, earlier detection and improved imaging contribute to less deaths.  Certainly, some new treatments – such as immunotherapy are helpful.  But let’s face it, if you get any type of complex cancer, it’s a struggle. Where is the funding like we had during Covid?  Non-existent.  And don't just let the drug companies try and “cure” this.  They won’t.  They want cancer to be treatable yes, a chronic condition.  Live for a very long time while your monthly prescription costs keep the shareholders in lives of luxury. The rich will be fine.  The rest of us? 

I’m just venting a bit since the statistics I am hearing are self-serving BS. You can make anything of statistics. 

Example: Overall survival is 21% after 5 years, or Overall death rate 79%. Which would you prefer to hear?  The one with “survival” right? 

Or net profit has increased 20% from 5%-6% of revenue.  Is that really 20% or 1%?  You can tell any story you like with numbers.  And the Cancer “charities” are great at it.  I don’t blame them.  Just tell the truth. Stop sugar-coating this. 

As I keep going on about... Charity’s chemo drugs were 50 years old.  FIFTY!  If we’re doing so well, then where are the miraculous new drugs to back it up?  Early detection? Fine.  But many cancer’s don't show themselves until it’s too late.  Charity had a cervical test of some sort two months before she was told she had Stage 4 uterine cancer.  Maybe the early detection is not everything it is made up to be either?  

So, stop with the generic “we’re doing so well...”  We're not – and that’s the truth.  

My wife is going to fucking die because of this. You can’t sugar-coat that! 

Rant over 

March 17th 

We hired a venue for Charity’s birthday.  Her birthday is April 19th and the party is April 13th. We visited the venue yesterday. 

It’s a football training centre that you can hire for events. It seems decent enough and the hire price was only £250. Of course, there are other costs such as catering and bar.  All in it should be about £2,000. Of course, I have to pay.  I wonder if my mother-in-law will chip in or anyone else?  Highly doubt that.  I suppose everyone thinks I’m rich. 

But this means a lot to Charity – of course it does.  Just my Scottish nature kicking in when it comes to money.  I know I’m not going to really enjoy it.  I would rather do something else.  But it’s not for me.  So that’s fine. 

Patients note: 

Don’t take people for granted either. We understand things like parties are important – but involve everyone. Ensure you get what you want – and need – but also ensure everyone feels part of the process. Not just a “Would love a birthday party!  Thanks” 

Of course, my situation for this party wasn’t quite like the note above.  I just sort of feel that of course Charity knows I’ll pay.  This should have been a family contribution in my opinion.  Why do I have to feed 50 of her cousins?  Really?  I’d rather spoil my wife – but of course, this is spoiling her!  

Anyway, I’ll move on. 

We haven’t discussed the upcoming clinical trial appointment, or anything else related to this disease this weekend.  There’s really not much to say right now.  That’s ok as well. 

March 18th 

Charity asked me this morning if I was worried.  I told the truth, I responded “Yes”.  I also said I had more hope in the Immunotherapy trial than chemo which I am increasingly disliking.  I asked her how she felt – and also said she is worried.  She also mentioned she feels the need to de-clutter. Why? I didn't ask but is it because she doesn't think she will be here long, and wants to leave the place “tidy”?  Sounds crazy – but perhaps these are the kind of thoughts that patients in her position have? 

I didn’t follow that up. 

We decided let’s just get to Wednesday and see what it’s all about. 

In the meantime, I have done more research on the drug I suspect is being used “Pembrolizumab”.  It goes by its commercial name “Keytruda”.  This combined with another drug call “Lenvima” seems to offer a better response than “Platinum based chemotherapy”. 

From their website 

68% of people who responded to KEYTRUDA had an ongoing response for 1 year or longer. 

44% of people who responded to KEYTRUDA had an ongoing response for 2 years or longer. 

At a minimum it buys more time – at least on the surface. 

Everyone is different, all cancers all different etc. There is no crystal ball.  In fact, I don't want one even if there was. 

Note: 

We’re not experts.  But it is very important that you do your own research.  You need to know what’s coming.  At least get a feel for it. Write down a list of questions...  

What are the side-effects, how is this delivered, how long is the treatment, what should I avoid eating, what can I do to help, how will it be monitored? And so on.  

It’s always a good practice to be as well prepared as you can be. 

The Clinical Trial -- Beginning 

The Hospital called abut some forms that need to be completed for Wednesday.  Confusing.  One for “pre-screening” that talks about a biopsy, and testing the tumour to see if it comes back “positive” meaning suitable for the trial.  And another form for overall consent once accepted into the trial. 

Well, the other form said Your tumour has come back positive...” and you are accepted. For goodness's sake.  Can we get some clarity?  Why can't hospitals communicate clearly.  Is she accepted or not?  Does she need a biopsy or not? It seems like she is... but why the pre-screening form at all? 

The “main” form indicates this has already been done and she is accepted. 

Hospitals need to learn than communication needs to be crisp and clear. Charity just told me her stomach is “turning”.  Stress is not needed right now.  And, it was avoidable. 

Anyway, at least it “looks” like she is accepted. Let’s move on. 

The trial has never been done on humans – so it’s the latest medicine available. We might as well go for it.  And I’m glad it is this. 

I found more info on this trial. 

The drug “AZD8205” targets cells with an “overexpressed” protein known as “B7-H4”.  B7-H4 is found in all cells. But is far clearer in tumours.  AZD8205 targets the cells with the “overexpressed” protein not allowing them to duplicate, and they die. 

That is the goal. 

March 19th 

A bit of an update on the trial. We received a call from UCLH.  It appears that Charity is a “candidate” for the trial given her cancer “profile”.  But this does not mean she has been accepted.  I assume there will be blood work on Wednesday and perhaps a biopsy?  No idea.  But it is not 100% certain whether she will be accepted.  I would think given the advanced stage of this, they would want to see just how good their new drug is? 

Hopeful thinking I know – and trying to apply logic sometimes does not work. 

She better get accepted. This is the last chance – the only chance. 

Apparently, if she is not accepted, they tell her why.  That could also be devasting news. But the trial isn't primarily to seek out a “cure” or massive improvements although improvements is the whole goal. It is also to find the correct dosages.  Remember, this has not been tested on humans before – so there are many unknowns – not just efficacy. 

I’m not nervous for some reason.  I just have a strange feeling right now. 

More on this tomorrow.   

March 20th 

Just finishing up work – for now.  We need to get ready to go to the clinical trial appointment.  I have made a list of questions – but they all seem so routine. 

The 2 biggest questions are: 

What does Charity need to do to be accepted? And, 

When will it start? 

I have the usual list of questions written down – remember, that’s always important! 

I suppose the trial will be explained – how it is given, monitoring and so on.  They will probably cover all of my questions before I even ask – good! 

Update when we come back. 

Basically, there are multiple steps to this.  They need to ensure that she is a practical candidate -- and this is done by examining some tissue from her.  (They use tissue from her last op.) Charity had to sign a consent form in order to allow the trial team to access this.  Then it needs to get tested.  This takes up to 3 weeks – but hopefully less. 

This trial is not Immunotherapy.  Basically... cancer has "protein" on the cell that can be readily found – as long as there is enough of this protein.  That is what the test is for.  To see if there is enough. If she is not accepted, then there is another trial starting that is different and we'll go for that one. But too early to even start down that road. 

So, while this is still "chemo", it is a lot smarter.  The drug looks for the cells with the specific protein and when found, injects a chemo drug into them. The old chemo just looks for fast growing cells and kills good ones and bad (such as your hair cells which are fast growing).  Traditional chemo can't really differentiate well between what a proper cancer cell is and a normal one. 

No big surprises – except I thought it was Immunotherapy.  It’s all good though, since it still sounds like a massive improvement on the garbage they current use. 

Fingers well and truly crossed. 

March 21st 

Hopefully the TPN (that’s the IV nutrition) will be stopped.  The dietician at UCLH has sent a note to Baxter’s (the TPN provider) to let them know to stop. Of course, they say they haven’t received it. And the hospital says they’ve sent it. 

How difficult can it be? Of course, I’m not in the least bit surprised. The little things seem to be so difficult to get right.  Now, many things go right of course, but the simple ones are what frustrate us no? 

Anyway, I told Charity, she is the boss of her own body and she can tell them not to come.  She doesn’t need them to have an email.  She has been told by the hospital she should stop. 

Good enough for me. 

March 22nd 

We’re planning Charity’s birthday party.  It will be a big event. Probably 70 people or so.  I wonder what people are thinking. That this is her last birthday? Probably not – but for many that has to be in the back of their mind?  For me?  I'm not really thinking that way anymore.  It makes no sense.  What will happen is out of our control. 

Before all of this happened, we were looking into moving. It would seem Charity is still interested in doing so. In the UK you can swap your council house for another. It’s quite convenient.  Our house is a 4 bedroom, in a great location even if the neighbourhood is a shithole.  But hey, that’s London. 

We will be looking at another property on Saturday.  It’s north of here in Barnet – but still walking distance to the tube.  Cockfoster’s – it’s the end of the Piccadilly line. It would have to be cheaper. Rent, council tax, heating etc. Anyway, we’ll see.  I’m surprised at this since I’m certainly not up to moving right now. And Charity is?  We’ll see.  Anyway, we’ll check it out. Something to do. 

Princess of Wales 

Just heard about the Princess of Wales. Shocking.  Cancer does not discriminate. I sort of knew it.  When I heard “abdominal surgery” a while back, I just knew. Why would a woman have that?  If it was appendicitis etc, they would have said.   

I suppose they wanted to get the message right. The secrecy basically said it for them in my opinion. 

People making up all sort of rumours.  Poor woman probably had to contend with that nonsense along with her Cancer. 

I wish her well. 

March 23rd 

Frustrated! Looks like I have put on 1.5KG?  How is that possible?  Running almost every day and eating healthy.  Could it be I’ve added a big bowl of All-Bran every morning?  And a bit of cake in the evening?  hmmm Maybe? 

Anyway, need the all-bran and will finish the cake and that will be that! 

Nothing much happening today.  The TPN (nutrition) is now stopped! This of course, means we can go away somewhere.  Why not? We’ll get past the Birthday party first. 

The problem is... there is always something going on in the horizon – in this case, waiting for the clinical trial acceptance, a birthday party and so on. 

Note: 

You MUST make time for yourselves.  As you can see in my case, time is slipping away and we’re not doing anything about it.  This could be a massive mistake. 

March 24th 

We went for a nice walk today.  It wasn’t too cold and it was nice in the sun. Time is starting to become meaningless for some reason.  There is only today after all, and perhaps myself – and maybe my wife and I are starting to just live this way?  I have no idea – but for me, it seems so. 

The trial seems far off, although it isn’t. I’m about as certain as I can be that Charity will be accepted. Given her cancer is so aggressive, surely there is plenty of this “overexpressed” protein? That’s just me using logic of course. But I will be very, very surprised if she is not accepted.  It would also be devastating since this is plan “A” as far as trials are concerned. 

I wrote an email to the study Dr.  

eMail to the study Dr 

I understand this trial is essentially targeted Chemotherapy where the drug finds cancer cells by recognising an overexpressed protein, binding to them and then "injecting" a chemo drug into them... 

If my understanding is correct, then how is this really different from traditional chemo that recognises "fast growing cells" and targets those?  I understand this trial is using a drug that is a lot smarter in the targeting aspect, but how much more effective can this really be? 

Basically... at the end of the day, it's just chemo – albeit protecting "good" cells?  Or because it is targeted, can inject much more of the chemo drug than traditional chemo does? 

I'm certain I am over-simplifying this at my simple level – I must be missing something? 

Just me using logic again. I know I am missing something. I also know someone will ask me? So, I just want to know. 

March 28th 

It’s been a quiet few days. We have been organising the birthday party and it looks like I will need to work an extra month to ensure I meet my financial goals for retirement!  Anyway, she's worth it and as much as I complain about money... (only to myself... Not out loud). 

I was at the ear Dr on Tuesday.  I had an operation last year and my hearing in my left ear has deteriorated because of it.  Apparently, there is nothing they can do – and perhaps even a hearing aid will not help.  Not good. It’s probably about 5-10% of my right ear. 

I have to see the hearing aid “department” so they can sort me out with perhaps 2 hearing aids.  One for my right ear which is “OK” but can be better – and to see if a hearing aid in the problem ear will even help. 

Oh well... c’est la vie. 

The clinical trial Dr will call today at 3:30pm to answer my question about the drug – and why it’s so much better.  I have my doubts, but I am uninformed – I must be. 

I need a good run today.  I will go to the clock tower in Crouch End – which passes the new Banksy mural which of course, was vandalised.  This area is an absolute shithole. Just enjoy things – no need for that! 

I had a chat with Charity.  She is clearly “down”.   

My message to Michelle 

“Charity is feeling quite down though.  She's concerned about time of course.  Every day is another day where the disease has grown... She's strong... but reality is never far away. 

“I feel right now, it's only Charity and me at home... I do feel she needs more of her family... That sounds ominous of course, and it's not intended to be.  She has pains in her left side where the Cancer has grown into her Liver... So, it's worse than she lets on.  It's difficult -- just thought you should know.  I wouldn't say anything if it was "ok"...” 

It’s getting like it’s preparing for the end?  Yes, we have the trial.  But I know, there will be some respite... but that will end too. 

And then, so will my beautiful wife. 

I am sad. 

March 31st 

Sucks 

She is good. But life sucks. 

April 2024 

April 1st 

Not feeling good emotionally.  I had a real “go” at work last night about their inability to do proper change management.  But that was just me venting about my distress about my situation. 

Fuck 

Really... It gets to you eventually.  Yes, try and be positive but the reality is always in the back of your mind – and it does not go away. 

I was speaking to Charity yesterday about going back to Paris where this really came to the fore. I want to go back to just say “Fuck you Cancer... See?  We’re going to finish our holiday in spite of you!” 

I think this is the attitude we need to have.  The “Fuck you Cancer” attitude. 

Think I’ll start an organisation... fyc.org 

Fund raise and all money goes towards better drugs.  Not prevention.  Just better drugs to beat this. 

My “good” boss whom I have tons of respect for – and he has my back – said this to me just now. 

My boss’s take 

“None of us know the future.  It is facing the future that’s too hard for most.  You’re being made to - and that’s both cruel and hard.” 

Nail on the head. 

April 2nd 

Back to work of course – it never really stopped. And the usual issues. 

More bad news 

April 5th 

I haven’t posted anything in the last few days.  Everything was sort of quiet as stated.  On Tuesday or so – Charity said she was concerned she was feeling breathless as she came up the stairs.   

I didn’t really catch on to this – I probably thought it was just a fitness thing. 

I sent an email to the Oncology team – we have a contact there. 

Note: 

Ensure you always have a contact if things happen where you need advice.  It’s not 111 (UK). It’s someone on the team that knows your case and can advise with confidence. 

The specialist Nurse rang back and said go to A&E.  We did and Charity was admitted.  She had a CT scan which was reviewed this morning. 

I was on the WhatsApp video call when the Oncologist Dr was there. 

She has fluid build-up.  In my limited research – this is called a malignant pleural effusion and is “somewhat common” in cancer patients. 

The shortness of breath is really caused by the fluid build-up.  That is shocking.  This was not on the Oncologist’s radar 3 weeks ago! This is hyper-aggressive – full stop. 

They have given her steroids (after checking with the clinical trial people if that was ok).  This should help open her airway – but it certainly does not curtail the growth. Cancer will defeat steroids – every time. We’re just buying time until the trial (hopefully). 

The fluid will be drained – and that is better understood. 

This is absolutely shocking.  Really, really shocking. 

What does the future hold now? 

One last option.  This clinical trial.   

The trial not accepted scenario 

If she is not accepted, then it’s unbearable to think about this disease cutting of my wife’s oxygen.  There are probably other ways to breath I don’t know... But we’re (quickly) running out of options.   

Being not accepted means she has weeks/months to live in my opinion – which now is not so uninformed? 

The trial accepted scenario 

If she is accepted, then we are buying more time, and she can hopefully enjoy the summer? Let’s face it, the trial might be groundbreaking... but I have learned there is no silver bullet. 

I will say this, she knows the score here. And yet, she remains funny, engaging, positive and of course gorgeous. 

Let’s get this straight.  This should not happen to anyone. 

I am so very proud to be her husband. Every cell in my body means that.  I love her. 

April 8th 

Charity is home now. 

There were about 2 litres of fluid removed from Charity. No wonder she had trouble breathing. The fluid stops the lungs from expanding properly. The problem is of course, while she feels better, the root cause is still there. 

We’re hopeful that the trial will go ahead – and Charity saw the trial “lead” this morning who just happened by.  She knew who Charity was and they had a brief chat.  It sounds like we will hear this week if she is accepted. 

Better be. 

April 10th 

It was Charity’ birthday yesterday.  Her kids came over, so did her Mum and Niece.  That was nice for her.  I of course, stayed out of the way working as I do.  Not enough room upstairs – that's where the visit happened.  She’s much better, but the breathlessness is still there.  Obviously not as bad, but still there. 

I also notice a bit of coughing.   

I have read and re-read the discharge summary where they are quite specific about things. 

Note: 

Always read the discharge notes.  You will find things there (good and bad) that the Dr does not say.  It’s not their fault, it’s just that there are a lot of details. The notes are an excellent summary. 

They are referring to Charity having the disease in her chest.  To me, that is different than lungs?  Surely, if it was lungs, they would just say “lungs”?   

I do recall, that during the first visit after she was admitted, they mentioned the disease (disease is how they refer to Cancer), is closing her airway.  I only heard it once – then it was all about the fluid – which was horrendous.   

Why say that (closing the airway) if it was a fucking guess?   

Note: 

Dr’s.  Be sure about what you say! This isn’t a school exercise! 

And one more thing that is really pissing me off. 

It must be “Cancer fund raising season”.  Well, that should be 12 months per year of course.  But lately, the Cancer Research UK people are going a bit overboard.  I actually love and hate their adverts. 

“Together, we are beating Cancer” 

That’s the tagline.  

They show happy, lovely people being told... “The Cancer is gone...” Everyone cries of course.   

Now, I know people are living instead of dying with this awful disease.   

Why?   

Early detection, awareness, and imaging (i.e. if you have awareness, then better imaging pinpoints where it is etc?) 

Then?   

Cut it out, chemotherapy and adjuvant radiation. 

Early detection 

Nothing has changed... It’s the early detection part that is crystal clear.  

But Cancer Research are coming across like they are getting to the bottom of it. No... They are not.  There are some good ideas.  My wife’s clinical trial is a good idea, but it’s still fucking chemo. 

We need that Covid approach.  The whole world with an unlimited budget, no political BS and recognise that this is an existential threat – like Covid was. 

Sadly, corporations are making a fortune from Cancer.  It is an industry. 

Why this won’t be “cured” 

Imagine? If Cancer went away?  It would be bad for the economy.  That can’t happen. Imagine the political turmoil? Cancer employs people.  Think about it.  So, what’s a few deaths to keep employment at a reasonable level? 

Disgraceful.  My late wife said this to me... Just make it “chronic”.  The drug companies would have loved her. 

April 11th 

A reasonable day at work – for once. Nothing breaking every 5 minutes, no unreasonable demands.  I got a lot done. I even learned a new thing or two! 

Tomorrow is the end of the week.  St Bartholemew's said they would know by then if Charity is accepted into the trial.  I am now beyond nervous.  As stated, we know what happens if the answer is “no”.  The hope is that if it’s “yes”, then... we still have hope. Right now, that’s enough. 

Remember what I said about making “deals” with this disease?  That’s where I am firmly at now. Give me one more year – please! 

Anyway, my son Mark is coming on Saturday for the party.  Can’t wait to see him.  I think when you go through this, family really counts.  I feel so sorry for those who do not have that support. 

I do not have a big family at all (on my side). Me, my two boys (soon to be daughters-in-law), my sister and brother-in-law.  That adds up to 6 in total.  And they all count – and help. Charity’s family is huge.  And I mean HUGE! 

So, she gets all sorts of messages, support and so on. But I have to say this. I’m number one on her list.  I am her husband, and she loves me unconditionally. I am humbled by that. There are many times I feel I don't deserve her. And for some reason, this week is something like that. 

It’s really not so crazy. 

I was looking at pictures of her/us and I miss “us”. I tell you this, I will continue to look at those pictures and laugh and cry until my time is up.  Count on that. 

I probably mentioned that my son James is coming – cost me a fortune.  But I did have an epiphany.  You just can’t take it with you – and we need to live with no regrets.   

What would happen if Charity was taken from us, and I didn't get him over her when she is still “good”? 

I would not forgive myself. 

Note: 

Spend the money. At this point (90th minute... going into injury time), there is no “rainy day” to save for. Accept it, deal with it, and enjoy the time left.  No matter if it’s 1 day or 50 years.  Live! 

Until tomorrow.  Let’s see if St. Bartholomew's calls.  By 3pm, I will call them. 

April 12th 

No update.  Is no news good news?  We have had nothing but bad news for the last year. 

Feeling sad. 

April 15th 

Charity’s birthday party went very well.  I was feeling quite down.  All those people that love her. And was it really a goodbye? That’s what made me sad.  So unfair. 

Last night Charity noticed some bleeding when she went to the toilet. For goodness' sake. I sent a note to our contact at UCLH and she rang back.  She will check with the Oncologist and get back to us. This is not good. The clock is ticking, and we need the trial to start asap.  I have noticed an increased amount of breathlessness as well.  The fluid must be building up again – although Charity says she is still much better. 

Perhaps that is so, but I have noticed it. 

Clinical Trial 

Great news! Just got an e-mail that Charity has been accepted for the trial!  Needs to start asap of course.  Breathless, bleeding and what else is going on? The evil of Cancer is boundless. Every day, it just continues its evil march. 

I have a lot of hope for this trial.  It’s something new and that’s what we need. Not the prehistoric platinum-based rubbish (they work, but unscientific in comparison and will kill the patient). 

I’m actually a lot happier right now. 

Breathing 

Charity’s breathing has deteriorated today. I know I’m not imagining it.  We had a call with the UCLH specialist nurse. It’s basically, if the breathing gets worse, get down to A&E and have it drained again. I suspect that might be the end of next week?  We’ll see. But one thing is certain, it won't cure itself. Desperately need this trial. Same on the bleeding.  Paraphrasing slightly. “It’s not too bad right now... So not to worry”. Easy to say. 

April 16th 

Back to feeling really pissed off about everything.  Not much I can do about it.  This is a rollercoaster. 

CT scan now confirmed for April 18th, EKG/ECG confirmed for next Friday – so things seem to be moving along. 

I’d imagine April 23rd to get the CT results?  Surely, they could get them same day if they really tried? EKG should be a formality. 

A&E gets CT results asap.  And this is as important as anyone’s CT scan. 

So, that means the earliest date to start would be the week of May 6th? That is approximately 20 days from now... perhaps (probably)more. 

I see a visit to the hospital before then. The breathing is almost back to where it was a few weeks back. 3 weeks from now, it will be far worse – and let’s not forget, the treatment won't work “instantly”.  An “intervention” of some sort will be required in my opinion. 

Let’s hope this does not interfere with Charity getting started on this trial.  Can’t get a break. 

I know she is a priority, but things just take time.  Even if the EKG/ECG results are given to the Dr. the same day, the Dr. still must look/interpret... and the 26th is a Friday.  What’s the best we can hope for then? May 1st?  That’s still over 2 weeks away. 

How many times have I said, “Get used to waiting...”. 

April 17th 

Getting ready to go and meet the trial Dr at St. Batholomew’s. Not really sure what the Dr will discuss?  I’d like to have a timeline though.  CT scan tomorrow, EKG next week... “probable” treatment start date is... 

Something like that. I wonder if there will be any other important information passed on to us? 

I doubt it.  Just a consent form to sign and general stuff? I like details though – so we’ll see.  Update later. 

Back... 

Admitted again! 

Knew it! Admitted by the clinical trial Dr.  She clearly saw that Charity was having trouble breathing. 

Clinical trials have protocols.  Here’s one.  IF Charity signed the consent form and then this happened – even before beginning treatment – they would have to report it to the drug company.   

They want to know if it’s the drug (of course not in this case) that caused the issue. 

Talcum powder to the rescue? 

Therefore, the Dr said... “Let’s admit you, sort this properly using a procedure called ‘Talc pleurodesis’” 

From the NHS... 

A talc pleurodesis is a procedure where a medical form of talcum powder is introduced into the space between your lung and chest wall. This talcum powder causes irritation and inflammation which causes the lung edge to stick to the inside of the chest wall. 

Edit (April 24th, 2024)   

Can’t do it if you have steroids. Steroids reduce inflammation.  Talc pleurodesis counts on inflammation. 

Who thinks of these things?  Really.  Pretty amazing imo. 

So, let’s hope this works out?  My deepest darkest thought is that this time it is not fluid but the disease doing something? 

It has been 9 days since she was discharged. A short time for this type of build-up? 

I think it’s fluid.  Let’s hope so.  Update in the morning. 

April 18th 

No Dr visit yet.  I did speak to Charity this morning and she seemed ok. She did not sleep well – said the bed is somewhat hard and uncomfortable. 

Waiting for the Dr. This better just be fluid!  X-Rays are ‘ok’, but let’s face it, CTs are so much better. 

Well, we have an update – which is just you’ll have a better update later. 

They have reviewed the X-Ray from yesterday but are still discussing what to do.  There is no course of action yet.  That will come today.  It is not certain that the cause of breathlessness is solely because of fluid.  If it is predominately for "other" reasons, then there is still treatment to alleviate the breathlessness over and above removing what excess fluid there might be. 

I asked about this since we want Charity to get to the trial in the best possible condition -- which will start in about 2 weeks.  That said, all consent forms have now been signed and there is talk about getting the required scans and prerequisite work done while she is an inpatient.  That hopefully speeds things up.  But all to be confirmed. 

I doubt this is fluid. Last night, I “hoped” it would be.  Now, I have faced reality.  

The Dr said she can visibly see the cancer easily. I asked what the difference is (fluid-wise) from last time to now.  She did not know.  She is waiting on the x-ray from UCLH from a few weeks ago – but they are discussing.  Surely, if it was just fluid, it would be a “no-brainer”? 

The Dr did mention there is “some” fluid there.  “Some” isn’t a lot. It's some and we knew that.   

So, the delta is? Disease imo of course. 

Note: 

Listen carefully to the words Doctors use.  They know things but will be deliberately vague.  You need to read between the lines – such as “some” above.  That was used in the context of the larger issue.  It’s really caused by the Cancer.  They know but are waiting on the expert's advice. 

And now?  We wait. 

April 23rd 

An eventful few days. Charity was discharged on Friday. They did not do anything at all.  St Barts had issues getting earlier scans from UCLH and therefore did not want to continue without this information. 

Back to A&E on Monday morning (yesterday) where she was of course admitted again.  Her breathing was and is bad. However, as we now know, it is not all because of the fluid.  The disease is causing her breathing issues. I suspect it is starting to get in the way of her normal lung function. 

Draining fluid will not really help imo. 

They will insert a catheter that will help drain excess fluid.  This means draining this stuff at home into a bottle every now and then. 

The trial can’t come soon enough. 

As stated, the fluid is no longer the issue – it's a consequence of the cancer (catheter or not). 

It has been confirmed it will start next week.  But there is still blood work to get done and an EKG and it needs to be at St. Barts – which could be a problem getting her to in a comfortable fashion of course. 

Why they can’t do the tests at UCLH is beyond me?  Really! (I know they have different blood tubes for trials. But...) 

I’m very agitated at the moment. 

Respect? 

This morning, the Dr today was talking. I asked why they could not remove fluid from her and then see about a catheter and... At this point the Dr interrupted and said “I’m not finished...” I simply said, “Neither am I...” The questions I asked were perfectly valid for a layperson in my opinion.  So, she should just have listened and then respond respectfully. 

They talk about respect this, respect that.   

Where the fuck is my respect? 

Work tonight 

I left the hospital around 6pm.  I have work to do Tuesday evenings – contractual with our clients. 

It really was a mess – some people do not know how to change manage.  Took me until 21:45 to back out!  

I also set up a group chat with my senior colleagues.  I need to let them know formally what is going on. They are supportive. 

Good people. Thank you. 

April 24th 

Catheter inserted! Charity feeling much better. 

Excellent. 

She will come home tomorrow. Brilliant. 

What kind of life is this where you need a “drain” to get shite out of you to live. But I digress. A good result! 

Trial next week – hopeful but scared. If the results are good?  Fabulous.  If not?   

The cancer is an issue in her lung function.  Yes, the catheter helps fluid, but not the overpopulation of bad cells in her lungs. 

April 25th 

First, it’s payday. An always welcome day every month. 

I spoke to Charity briefly this morning.  She is better but said her breathing is not as good as yesterday. Maybe she thought it was better than it really was? Surely it can’t deteriorate that quickly especially when fluid is being removed? 

Or... is it the disease? 

Frightening. Let’s see how she is later today? 

Just spoke to Charity’s Oncologist. The cancer is spreading through her lungs which we know.  However, the treatment is steroids to ease breathing. The real problem though is that this might affect her suitability for the trial.  The Oncologist will follow up with the clinical trial team to get an answer on that. 

This is now very real, and very scary.  I cannot imagine how my wife is feeling.  She said she did not want to think about this right now.  But how can she not?  Poor, poor girl. 

I’m feeling beyond anxious. 

The trial is on. Basically, if she is feeling “ok”, then it’s good. I was thinking about arguments about why it should go ahead if they said no. Anyway, it is... so all good. 

Note: 

The Oncologist should have done her fucking homework!  Do not bring this garbage into a conversation.  Ask St Barts if the trial is ok first? Not a “hmmm maybe it won’t happen” bullshit.  I am beyond angry at her stupidity. 

My UCLH Complaint 

I thought my wife would be “safe” in UCLH.  I have made an official complaint. 

Here it is... 

Hello, 

My wife (Charity) is currently in bed x. 

She is in serious distress and has been for a few hours.  No one has helped her.  I rang the nursing station and did not get an answer for at least 30 minutes (starting around 10pm). 

She has late stage cancer and needs help.  She has a "catheter" that drains fluid from her chest.  It is blocked – and that is life threatening 

How can this be? 

This is not an acceptable level of care.  I am happy for everything you have done for Charity since she was diagnosed about a year ago.  But... this? 

I also rang the reception and tried to get "someone" to go and help... they just put me on hold. 

My wife rang her friend who works in the hospital to try and get help.  Seriously... is this acceptable?  I just hope and pray she is ok.   

Please look into this and get back to me.  We need answers on why my wife is left in distress.  I thought she was safe in UCLH? 

Remember what I said about all of the “respect” posters?  This is 100% disrespectful of her. 

Someone did come and said they will get a Dr. Still? Nothing and it’s been 5 hours now.  Seriously... If this fluid builds up, it will kill her. This is not a broken ankle.  It is life threatening. 

If I was in America, the lawsuit would already have been filed.  It’s that bad. 

April 26th 

We just heard that the trial will not accept patients who are on steroids. So, the plan is to wean Charity off them over the weekend. At least today, we have a clear plan. The issue of course is that the steroids help her breathing. So unsure how this will work. 

I understand it’s a balance. No steroids means breathing difficulties BUT a trial can go ahead. However, if you can’t breathe...  They might be able to do something else such as an additional “drain” or even the talc on one lung.  

I suppose we just have to see how Charity reacts to the reduction/elimination of steroids and let the Drs work out an approach.  The frustrating thing is that it’s always a wait and see then react to things since it’s not straight forward and everyone is different. 

Charity also got a visit from the “matron”. She apologised for yesterday’s disgraceful treatment. 

Note: 

You and your care are the most important thing in the world.  Never, ever accept care that is not up to standard.  You deserve the best care available.  Do not be shy to voice concerns. 

The way forward 

The way forward is to eliminate the steroids – and with the elimination of the fluid, this gives her a chance to get on this trial. 

Life now has a single focus.  Getting on the trial. Nothing is more important.  Not retirement, not holidays, not money, not <name it>.  Nothing.  This is what life is now all about.  Period. 

Remember what I said using a Football analogy?  It used to be the 90th minute was approaching.  We are now deep into injury time. 

April 27th 

Reasonable day. 

Charity seemed a little better.  So off steroids by Monday... home Mon/Tues... appointment with the trial people on Thursday and I'm going to ask them to start this right away?  Or at least within 24-48 hours? 

Nice text 

I had a nice text from a good mate (Also Scots). 

“Bro, you are doing so well.  It must be eating you up inside, but I have so much (proper) respect how you are dealing with everything. Well done That Man” 

Nice.   

To be honest, I was serious about my wedding vows. Sickness and in health.  I meant it! 

April 28th 

I spoke with Charity this morning.  She is still ok with the breathing. We’ll see when the steroids are completely gone of course. But I think with this continual removal of fluid, she will be ok for the trial. 

All we need is one treatment – and take it from there. It’s getting to that first treatment.  We get there and there is hope. 

My mate said he has respect for me and how I am handling this. I am glad that outwardly, I appear that way. Inwardly, I am not. 

We do changes on the weekend as well. Generally, they are fine.  Today?  Not so.  I checked and my stepson(s) will go today. 

Carer’s Note: 

When you are a “carer” AND working, the pressure is immense.  I am well paid, I have responsibility, I take that seriously. This is why you need other support.  YOU cannot do this by yourself.  Admit that and ensure that you have support.  When my late wife went through this, I did this by myself.  A massive mistake. 

Incident update 

I want to re-visit the “incident” from May 29th last year.  Charity’s son and I have basically made up.  I was wrong then. 

Everyone now understands this disease and what it does to you. I was still wrong though. It took almost a year to get back to somewhere respectful. 

I almost feel that I need to apologise to everyone on the planet for some reason.  I know I don’t have to.  Maybe I just feel that I’m apologising on behalf of “God” for fucking up everyone's life. 

Tired of life now. Maybe I should be the one that gets cancer? 

April 30th 

One of the most difficult decisions.  Do I retire?  I have written this.  Make no mistake, this is life changing, life defining...  I can't send it yet – but I want to. 

Note: 

Don’t make rash decisions.  Always take a step back and be sure! I love making money!  This is a serious decision and cannot be made purely because of emotion. 

May 2024 

May 6th 

Well, I have settled down a bit.  I did take last week off and that helped. 

Charity is not doing well.  The Nurse came yesterday and drained about 300ml of fluid from her – so that helped. But she is not good. 

The trial starts in 2 days. I hope there is an immediate benefit. 

On Saturday, her kids and Mum were here.  She was sitting on a chair and something seemed wrong. She could not control her bowels and had an “accident.”  I took her upstairs (gently) then washed her, changed her, and helped her into bed. 

She was more embarrassed than anything – but of course she need not be. 

I feel for her.  I do. I love her.  Unconditionally. 

In sickness and in health. Remember? 

Note: 

There is never a need to be embarrassed about these types of things. Help your loved one through these trying times. Your loved one needs you more than ever! 

Hospital tomorrow afternoon. It is difficult getting her there and back. She also needs to go back on Thursday and Friday.  Honestly, I would admit her Wednesday for the trial and keep her there until Friday afternoon.  So much easier for her. 

May 7th  

Getting ready to go to the hospital.  We will see about tomorrow’s admitting “tomorrow”. 

Well, Charity was admitted today by her clinical trial Dr. The trial is postponed until they can sort out the fluid. It only means a few days – maybe a week – but Charity is really upset and down with this. I feel for her. We all do.  But it’s not cancelled, just postponed. And to be fair, she is not in a good way right now with the fluid.  So, sort this out, breath much better and start the trial in better shape? 

The trial really must be strict.  It’s science.  And you have to know what parameters you are dealing with – with no external influences.  It must be tightly controlled. 

In my own job, I insist on one change at a time. If something breaks, and there are multiple changes, then what caused the issue?  You can’t tell easily.  I get it and understand.  It does not make it any easier to accept delays, however. 

May 8th 

Just off the phone with one of the oncology (trial) team.  The plan is as we thought.  Get rid of the fluid – probably a drain of some sort, get Charity breathing better, then start the trial. 

I asked about the criteria about feeling “better”.  It’s basically; not breathless at rest, can dress herself, can walk a bit... 

Right now?  Cannot do any of that. For the last while, I have had to dress her, even put her skin cream on her legs etc.  That’s never happened before. 

So, if she can do that by herself?  Much better! 

The procedure will happen on Thursday.  And then, home on Friday?  Let’s hope. 

May 9th 

00:19 Idiot Dr did not write the order for the drain to be “opened”. 

Nurses cannot just do stuff – they need it “written”. 

So my wife is left uncomfortable.  I love and respect the NHS – but come on! 

May 10th 

I sent a note to our contact.  I said her care is “garbage”. Dr Devlin then appeared and scheduled a CT-Scan.  

Note: 

Complaining can be hard.  But to get stuff done?  You need to.  You are the most important patient on the floor.  Period! 

So, we’ll see. 

My crystal ball says this. 

Cancer is back in her bowel (hence the sickness). It is rampant in her lungs.  I suppose that’s all I can consider?  I have looked for signs of skin discoloration and maybe saw some? (Liver). 

It’s near the end.  But... One treatment might change all of this? 

And...  my sister is also a “carer”.  My brother-in-law who has prostate cancer and diabetes might need his leg amputated. 

What the fuck is wrong in this world? 

Not a good week.  I knew this would come. Is the trial too late? 

Update 

Trial is off.  Dr Devlin gave me the truth I sought.  A few weeks at most. 

I will look for funeral directors this weekend. 

I am beyond distraught.  

May 14th 

Clearly, not as many updates.  My wife can no longer talk. 

I am not sure what this week holds.  I have called the cemetery, the funeral director. I know what to do. 

It simply will not be long now. A few days? 

This is now taking her quickly.  When I called yesterday, she had a mask – called a nebulizer. I thought it was oxygen.  I was and am in shock from that visual. Fuck cancer. 

May 17th – Belated 

Charity passed away this morning at 05:30. It is now May 22nd, and I am making funeral arrangements.  The funeral will be on May 30th  at 10:00am. 

I am beyond distraught. 

June 6th 

I am grieving. This has hit me harder than I could ever imagine. I have signed up for some counselling and hopefully will get a response this week. 

I need it. 

I am going to Scotland on June 18th to finish the West Highland Way (last 2 legs). I had always thought about doing this. I can’t say I am really looking forward to it. I just think I intuitively understand that it will be good for me. 

I went back to work on Tuesday. Things are ok there and getting back into it. At least that’s ok. 

Here’s how I feel. 

Lonely, distraught, empty, hopeless, ready to cry all the time. 

I knew I would miss you my beloved wife. I just didn’t appreciate just how hard this would be. I suppose there is no way to predict. 

Note: 

Do not be afraid to cry – or ask for help. 

I’ll update after I speak to the counselling people. 

Resources 

Work and Cancer - Important 

A note about Charity’s work. They reduced her salary to 75% while she is on sick leave.  Now they say it will be 0% as of October.  Hmmm Get cancer lose your income!  

At least she will receive 50% of her pay for 2 years. The company has insurance.  This falls into the better or nothing category. 

Note:  

Contact your employer as soon as you can -- ensure you know your rights.  When you have cancer, you are automatically (in the UK) considered to be disabled. This isn’t just a category – it has legal implications for your employer.   

From McMillan.org  

Summary (from MacMillan): 

If you have cancer the law considers this a disability. This means you cannot be treated less favourably than other people (who do not have cancer) because you have cancer, or for reasons connected to the cancer. That would be discrimination. 

Both the Equality Act and the Disability Discrimination Act say that your employer must make reasonable adjustments. These are changes to the workplace or your job that allow you to keep working or return to work. 

Everyone who lives in the UK has the right to have their personal information kept private. This includes medical information. This right is protected under the Human Rights Act 1998, the Data Protection Act 2018 and the General Data Protection Regulation (EU) 2016. 

You may want to talk to your employer about whether you want colleagues and clients to be told about your condition. Your employer should not give out this information without your permission (consent). 

Your employer should take care to protect your personal records, including emails and any meeting notes containing details about your condition. This type of personal data should only be used with your permission.