I’ve been the worst ever at blogging. I only made five posts last year and haven’t put out one since September. In my defence I’ve had a pretty busy time on the life front, but also a pretty healthy time on the health front. (Jo’s aunt Patricia described me as looking disgustingly healthy, which I will absolutely take). I confess I can do better.

Anyway on the health front, which is the whole dang reason this blog is here, I can confirm the infusions have improved in their side effects, which is nice.

The first time I had one I felt like I was hit by a bus in the sinuses and eyes. Or something. Three days in bed with the lights off. The most recent time (end of November) I had one day where I felt slightly less good and even during that day I did some housework between naps. So very positive.

I attribute this to making sure I am ridiculously hydrated the four days before during and after the infusion. It has meant I nip to the loo a trifle more but hey it’s better than a debilitating headache. I also suspect my body is getting used to it (so it will be interesting to see how it goes now it’s a few weeks late this cycle due to Christmas.)

For those of you who don’t know the infusions are immunoglobulins, to replace those removed and never naturally regrown after chemotherapy. These little fellows are one part of the immune system and are quite important to have some of. The need for them is only due to how effective the chemotherapy was, so it’s a kind of good news bad news situation.

The good news is that four years (this month) on from nearly dying (and hogging all the blood donors blood) my cancer cells (lymphocytes) are still mighty low, in acceptable range for health but only in at 1.1 in an ideal range of 1-4 (when I had treatment I was at 56 in that range). That means I am still, as a best guess by my excellent consultant Doctor Hodson, 5-10 years away from chemotherapy again. Which is exactly what I was the day after chemotherapy. So very good news.

All in all pretty good.

Anyway, Jo’s Aunt Patricia said I was looking disgustingly healthy and I think I am, which is a great feeling. (Photo below just for evidence). I had also seen her uncle Paul on the same day as we were all gathered for the funeral of Peter Kenyon, Jo’s other uncle (there were a lot of d’Ardennes and Kenyons there, she comes from a big family).

The funeral was an extremely touching affair simply filled with those who admired and had learnt from Peter and his wonderful way of interacting with people, helping the community and just trying to make everything better than he had found it. His life was one full of admirable adventures and worthwhile work and very much a reminder that it isn’t about the number of years you have but the legacy and the positives you leave behind in your life when you go. He was 78 years old when he died and boy did he also make those count, with standing room only in a big church showing how many lives he had touched during his.

When I spoke to Paul, he mentioned that Peter had read and admired my blog. I found this immensely gratifying as I had always hugely respected Peter as a force of good and enjoyed the times we had chatted. It also made me feel like I should write something as it had been such a long time since I’d put brain to blog.

With a blog you never know who is reading or who you are helping just by talking about a condition, especially one like Splenic Marginal Zone Lymphoma so it’s easy to forget it and slow down with posts. I’ve had many people reach out with questions, or people who have literally just been diagnosed and couldn’t find any resource. This simple statement reminded me why I did it, to help people and to leave the world a better place, something Peter Kenyon embodied.

So if this is the first time you are reading my blog. I have had SMZL (blood cancer) for 12 years this year. I’ve had some ups and downs, but I am certainly not dead (as of writing this anyway) and have led a great life since diagnosis at 30. It’s not been a death sentence and more over in that time I’ve had two great kids and achieved many more of my goals over the years. If you have just received your diagnosis or are feeling glum then I want you to remember that although there are ups and downs this won’t define you and that given the type of cancer it’s perfectly possible to live a great number of years with it, so far 11 and a half and counting.

Also remember it’s what you do with the years that is important not how long you have. I’ve been trying to embrace this thinking. So, Patrick my business partner, and I are going to give away nearly 15000 pounds split between three charities this year, with a hope to give even more next year. More to follow on this.

This is on top of more than 70k raised for charity from all sorts of different people over the years which is another thing this blog, and you the readers and donors, have achieved.

I’ll also, potentially, look at doing another fundraising event this year, as it’s been two years since the epic 5842 mile and 13k raised by thirty odd walkers in 2023. If anyone is game let me know.

But all this occurred to me after a simple chat at a funeral and reminded me you can always do more if you just get up and get involved. So that’s what I’m going to try and do again this year. Make more of the time I have, similar to Peter and others like him.

Thanks for reading this rather long and meandering blog and I’ll catch you all a little more often this year, maybe as much as a blog a month ;). The confession is I can do better. And I should do so. :).

I hope you all have a great start to 2025.