Last week I reached another milestone - 100 days post-transplant. If all goes well, this is typically the time when I can come off the immuno-suppressing drugs, reduce other drugs, and start mixing with people again. I’m happy to say that things have mostly gone well. Thanks to Nurse Ratched (sorry, I mean the loving care of my wife), I’ve managed to avoid picking up any infections and I’ve stayed out of hospital.

As fantastic as the care was in Australia, we’ve now come to realise that the reason I probably kept picking up infections between chemo treatments was because we weren’t following the neutropenic diet. In our defence, they told us about the importance of the diet in the first few days after getting diagnosed, when everything was a whirlwind, but never mentioned it again. By the time I was let out of hospital we had completely forgotten. It’s not like I was picking up half-eaten kebabs off the pavement. We just forgot about the basics - the need to boil drinking water, avoid any kind of take-out food. Basically, avoid anything with live bacteria or anything where you can’t be 100% certain that the food handling hygiene is top-notch.

The team at Sheffield, on the other hand, scared me to death about the risks. It worked. I was determined not to get re-admitted. Believe it or not, a Gregg’s sausage roll is just not worth a week in hospital on IV antibiotics.

I reached the 100 days, and sure enough, my immune system is rebuilding and I’m now off the neutropenic diet. I can drink beer again! Unfortunately, I can only seem to stomach one. Stomach ache and nausea is still ongoing so any hopes of a big day session in the pub are put on hold for now.

The other thing that is ongoing, and shows no sign yet of getting any better, is the neuropathy in my feet.

I asked the specialist when I could expect to get the feeling back in my feet. He said it could be weeks, months or never. It seems that predictions around neuropathy recovery are about as accurate as economists predicting the next recession. I’m trying to get out walking as much as possible and I am slowly improving fitness, but I have serious stability issues - a moderate gust of wind can blow me over. People keep suggesting walking sticks and various other devices. I’d rather just keep working on it. I need to work on my balance and I worry about becoming reliant on physical aids.

The next battle is fatigue. I’m desperate for things to get back to normal. I want to get back to work. It’s not like I need to work down a mine. I figured I’d start working on my own projects again and once I approach being able to do 8 hrs a day at a computer I’m ready for paid work. I’m nowhere near it at the moment. My fit note from the Dr says that I’m at high risk and may be unable to work for up to a year after transplant. I keep testing it. The problem is, just when I have a good day and think I’m making progress, I feel completely wiped out the following day. My patience needs more patience (to misquote Jackie Chan).

I’ve also had the first of my long list of vaccines. They started me with the flu and covid jabs. I’m a new-born baby as far as my immune system goes. I’ve got a roadmap for the next 14 years of all the childhood vaccines I need again.

Lastly, I had the first post-transplant bone marrow biopsy. I should get the results in the next week. They’re looking for two things: 1) that there’s no sign of Leukaemia returning, and 2) chimerism analysis - the mix of my cells vs donor cells. I should be close to 100% donor cells by now. Wish me luck!