The end is finally here.

The trial drug programme hasn’t worked for me. and options have now run out.

I got the final confirmation on Tuesday. Here’s what happened:

On Sunday, 22nd June, my duaghter Lauren had booked us in to an hotel near her flat in Ealing, London, for two nights to celebrate my 50th. We drove down Sunday night and had a lovely evening at a local Caribbean restaurant.,

On Monday morning we got the tube to Sloane Square in Chelsea. That plan was to spend some time walking around posh and swanky London - Chelsea, Belgravia and Mayfair, and play it by ear after that.

Most of my favourite visits to London have involved just walking - there’s always something new to experience.

This time, however, I was under no illusion that my fitness would be a big inhibitor. I would need to take it slow and easy. In fact, we got to about 4pm before I couldn’t do any more and had to call it a day.

I was in a lot of pain so we drove home the next day on the 24th June.

My next clinic appointment was scheduled for Mon 1st July, but I didn’t make it that far.

I usually ache after exercise but I quickly realised this wasn’t business as usual.

Since first being diagnosed with Leukaemia, I’ve been able to tell the difference between standard aches and pains, and bone pain cause by inflammation in the bone marrow driven by leukaemia. For this reason, I suspected I was in trouble and the hospital advised us to go in straight away - a day earlier than planned. The tests and bone marrow blast detections confirmed what we suspected - the white cell count had exploded in two weeks from 4.3 to 110. I was admitted to a ward straight away in an attempt to get my pain under control.

i quickly got put back under the charge of palliative care to sort out an enhanced pain management plan. My treating haematologist then confirmed everything we had previously discussed. The only option I had left was donor lymphocytes, yet, for that to be successful my white cell count would need to come back under control. They stated, and I agreed, that everything worth trying had already been attempted and any further attempts would just equate to more torture. My body is no longer in a good enough state to take further damage.

Since being admitted this week the focus had been getting on top of the pain. It has been tricky, to say the least. I think I’m now on a plan that works and I’ve been discharged to spend my final days at home.

Final Days

My first question, of course, was how long have I got? At first, they said a few weeks. My main treating consultant has since revised this down. It’s more likely to be days rather than weeks. The progression has simply been too fast.

They gave me a choice of spending my final period in hospital, in a hospice, or at home under the care of my family. It was a no-brainer.

I came home last night and the District Nurse has been around all morning sorting out final arrangements for support and pain management.

I get a small benefit package which allows for a hospital bed and some aids at home to make things easier. We live in a 3-storey town-house and our main bedroom is on the top-floor. I’ll be instead spending my final few days on the ground floor, which will be much easier to manage. I tried spending a night upstairs last week but it’s just not achievable. I struggled to make it up and I now need a proper hard, supportive bed.

Support of Angel

As always, I feel so grateful for the support of my beautiful wife - Rachelle. She has been a rock from the very beginning. I really don’t now how I would have coped without her. She makes everything easier. The side effects means I’m always confused or struggling in some way. She just keeps on top of everything. I’ve also been lucky enough that Lauren has been able to come home. She is now between contracts so it works out perfectly for her to be able to help Rach out. I’m also lucky enough to have my parents and other family and friends around to help. Every day it reaffirms that we took the right decision to return from Australia.

We’ve been planning for this for quite a while. Everything should now be pretty much in place. We have the Will, and both financial and health lasting powers of attorney. I’ve also put together a comprehensive document explaining everything so this should make it much easier for Rach in the coming days.

The only real problem, I would say, is that I’ve now fully accepted everything, whereas it’s been a bit harder for my wife. I’ve been telling her for ages she needs to consider her next steps, yet she’s found it difficult to talk about anything other than my making the most of my final few days. That’s no longer an option. She now needs all the help she can get.

What does Death Feel Like?

I had a frank discussion with palliative care about what my final days would look like. Now that there’s no hope of any final recovery it really is just about keeping the pain under control. It’s about getting that fine balance right - The more pain relief I have, the more tired I become, which in turn reduces the standard of the quality time I can spend with my family and friends.

Just writing this final blog post is proving to be difficult. i haven’t slept much in the last few days - it’s showing.

At least I do have some final say over these last few days. I know a lot of people don’t get that option.

Have I seen the Light?

It’s a common question. I’m an atheist, so it seems to be common amongst believers that we we will suddenly go through some last-minute conversion.. On this question, I take the same view as the late, great, Christopher Hitchens.

He rejected the idea that his illness would lead him to a deathbed conversion. In fact, he was wary that some might claim he changed his mind near the end, so he clarified:

“If I convert it’s because it’s better that a believer dies than that an atheist does… I hereby state that if, on the verge of death, I mutter anything religious, it must be presumed that the cancer or the chemo has got to my brain.”

Final Thoughts

I’ve done a few posts now in the last 2 years covering the progression of my disease. I honestly can’t be arsed going over the same ground again.

I’m grateful, for a lot, and there’s really little that I would change. The fear of missing out doesn’t really make much logic. I would love to see how my one and only daughter turns out. I’m so proud of everything that she has achieved so far and i can only imagine good things to come. I hope she uses this to make the most out of her life. Her mum will need some support for a while but the best thing she can do for me is to proceed with her life as planned. Her first job as a speech therapist has been a revelation. She seems to be born to the job, and she has loved her time in London.

Rach knows how I feel about her I don’t want her to do a Queen Victoria and spend the rest of her time in mourning. I hope she can find some continued happiness and start again.

It’s terrible to see my parents going through this. No parent wants to see their son or daughter leave before them. I’ve done my best to try and warn them of the reality of the situation but knowing and wanting to know are two separate things,

I hope my brother can find some lasting peace. He has had his own struggles over the years and I wish I could have done more to help out.

As for everyone else, I was hoping the return to the UK would have given me more time for visits and some quality pub time. It hasn’t quite worked out that way. I mentioned this previously when I talked about bucket lists. It’s myth from the movies. When you get to a certain state of health, priorities change from enjoying a Jack Daniels or two, to enjoying a nice cup of tea with an episode of Vera!

At least I did manage to finish Vera. I haven’t got around to finishing every Oscar winning movie, or getting anywhere near my book reading list. There’s a million of things that I haven’t finished. That’s life. I did get to see Liverpool FC win another league title so that’s something - potentially leaving before I need to even think about the next season.

As strange as this sounds, there’s also been something thacartic about ticking things off - all those tasks that I know are no longer relevant. All those newsletter subscriptions and bog posts that I no longer need to follow.

Is AI going to swallow the world? Will Ukraine get the better of Russia? Will China invade Taiwan? Will the world get to grips with climate change?

After a quarter of a decade of black swan events, what’s the next nightmare around the corner for humanity?

Maybe that’s the answer - and Robert Byrne was right.

Don’t sweat the big things - focus on the things you can control.

The purpose of life is a life full of purpose.