Coping With Chemo

2025 April 19th

So, chemotherapy for me is over. Hopefully forever. I’m on day five of my final chemo cycle and currently suffering quite significant fatigue. I’m glad to say I’ve slept well at night despite yet another muck-up where Amersham Hospital’s blood clinic, having accepted my booking and taken my blood, completely failed to send my results over to Mount Vernon. So, I sat around for over two hours whilst dedicated medical professionals who doubtless had other and important things to do sent emails and made phone calls to chase them up, until finally they had what they needed and could get my treatment made up. Again the delay meant a further injection of steroids as well - drugs I’d be happy to not see any more than absolutely necessary in my system.

Anyhow, we got finished eventually. Six hours after I got there, they unplumbed me and declared me fit to be released back into normal society again. Of course, I wasn’t going to go quietly, and Mrs.G had been off to collect two big boxes of cakes I’d ordered from the local Wenzels. So I went back with those, handed them over, and departed a second time with a lot of thanks and handshakes.

Seriously if you ever find yourself in my position, I hope that you get the level of professionalism and compassionate care I’ve enjoyed from the staff at Mount Vernon Hospital. I really couldn’t have wished for better. I sincerely hope that the cakes were good.

So five days later, how am I doing? Very fatigued, truth be told. Despite the extra steroids, I didn’t actually didn’t suffer disrupted nighttime sleep this time, I’ve got a decent 8 hours or so each night, but also have been flaking out for another couple of hours once or twice a day since. I did get one three-hour job done for work, but it took me about three days. Otherwise, I’ve frankly been just surviving; sleeping, eating, a few light walks to try and work some of the fatigue off, but not a huge amount more. However, I’m starting to feel signs of my energy coming back, and hopefully in a couple of days I’ll be back to “fragile” en-route eventually be “well” again. Nonetheless, let’s play fair with myself and life - I’ve just about a week for each cycle of chemotherapy, not had too much in the way of other symptoms (let’s gloss over belly fat and white hair for now), and hopefully it’s now all uphill again. So, I’m looking forwards to getting my fitness up, my weight down, and returning to making all the things I care about happen again.

But right now it does put me in as good a place as I’ve ever been to offer opinions about how to Cope With Chemo. Okay, any advice I can offer is based upon a sample of one patient (me!), and it’s possible some of it could be improved. Not that I want a chance to try and improve upon it, so I’m going to share what I’ve got.

Chemo works in three week cycles. It starts the night before the infusion where you have to take steroid tablets 12 hours, 3 hours and 1 hour before the infusion (so in effect the night before, when you get up, and in the car on the way to the hospital). Then the infusion should in theory last about 90 minutes when you include the saline flush at each end - in practice just write out the whole day and assume you’re not going to get anything else done. The medical professionals need to take charge of this, and you just need to accept their dominance. After that the next three weeks will be in roughly three portions that you can divide into:-

Week 1 - extreme fatigue, with powerful protein cravings;

Week 2 - fragile, but starting to feel normal again;

Week 3 - feeling great, what was all the fuss about?

So you really need to think about how you’re going to prepare for that? The week before chemo needs some sensible preparation: stock up on food that is high in protein (yoghurt, fish, grilled meats…), plenty of nutrients (salad and veg), but try to keep the calories down (avoid the fried stuff especially, but also keep carbohydrates like potato, rice and bread down). Really really also, try and plan your life so that you are doing as little as possible in week 1 with any kind of machinery or sharp objects - your co-ordination won’t be great, and for that matter chemo doesn’t help you heal from any cuts and burns either. I’ve got a 3” scar still on the back of one hand from where I caught it on a wire fence six weeks ago, and a few bits of “chub rub” inside my thighs courtesy of the weight gain that is very slow to heal. Yes I’ve put on about 8kg, the project to shift that starts in about another week! Cancel every meeting in week 1, you’ll be no use in them anyhow.

I’d also say, very strongly, try not to be alone much in week 1. Have somebody around, just in case. I certainly am going through everything with a strong sense of being only just able to cope with anything at-all during week 1, and whilst I’ve had no disasters, I’m not sure I’d handle anything much more serious than, well I lost some cereal on the floor the other day and just about coped - but frankly that was about my limit. I’m very grateful to Mrs.G and her employer for their flexibility in letting her be around for me all the time, and for an old friend who came to stay this week, but I can imagine for some people this must be a real struggle.

Going forwards it gets a lot better, but there are other things I’ve learned. Wean yourself off the increased protein reasonably quickly, not because it’s harmful but because, however hard you try, it comes with a lot of calories you’re better off without. Do try to start exercising as soon as you can as well - week 1 that will just be a few short walks, but build it up as quickly as your body will take. This might go against all your instincts, because you really want to just curl up in a ball and hide, but it really does help to “exercise off the fatigue” - a phrase I’ve heard a few times and rings very true.

All the way through be aware that, amongst the other things the chemo has attacked, is your immune system. I’ve been taking a lot of care and by and large I’ve succeeded in avoiding all the nasties going around (and just over a week ago I took advantage of the little card giving me free prescriptions and my medical “status” to get a free Covid jab as well). The rather Stormtrooperish FFP3 masks I’ve been wearing in enclosed public places seem to have protected me from getting anybody’s coughs and colds and I’d do the same again. Similarly I’ve just been defaulting to good old lockdown-style online meetings wherever I reasonably can, and the rest of the time been open with my friends, family and colleagues that I need to avoid all and any potential for even the most minor bug - they’ve all respected that, I’m glad to say.

By week 3 hopefully you’ll be pretty much back to normal, and I for one am very much looking forward to my first week 4 - hopefully a continued improvement, more exercise, more work, losing weight again, and above all, no more week 1s.

What have I got to look forward to? Well latest is likely mid June I start 6 weekly doses of radiotherapy, which I believe should remove the “motor” that can drive cancer back out of the prostate and into the rest of the body again, as well as killing it off for good in the prostate itself. At least that’s the plan, and I’m fully bought into it. So with any luck ratiotherapy will be over by the end of July, and who knows I might have my aviation medicals back by October. We will see.

Oh by the way, the blood tests, when they eventually got through, looked great. My PSA is now 0.06.