Six day update (Oops)

Where does the time go? Seems like only yesterday that I was writing the last post, rather than nearly a week ago. Nonetheless, the calendar doesn’t lie, so I ought to have lots to report, but in practice, it’s been a pretty quiet week, and from my perspective, none the worse for that.

I guess that’s the nature of the resting between the cycles. I’ve spent much of the time doing very little. I’m still feeling very tired most of the time, and catching up on sleep doesn’t seem to have helped much. I’ve been so tired that I’ve even managed to sit still long enough to watch some of the tennis from Wimbledon!

In short, for the first time I seem to be about to go into a cycle of treatment while I’m still actually feeling actively ill. From talking to other patients, I don’t think this is unusual – quite the reverse in fact – the fact that I was not feeling exhausted seems to be fairly unusual. Hopefully I’ll feel a bit more on top of things come Tuesday when my next cycle starts though; it’s one of those times when I have to put on my brave face, and that will definitely be easier if I’m feeling a bit better at the start.

Overall, when I look back at cycle three in its totality, the major themes were the tiredness, a much worse case of peripheral neuropathy during the first week to ten days, and the ongoing struggle with managing my ileostomy.

Other side-effects were there too of course, but in the grand scheme of things, they just weren’t a major issue for me. In particular, I saw a lot more dryness of skin, especially on my hands and the ends of my fingers, and despite my best efforts to be a “new man”, and moisturise at every opportunity, I ended up with some quite nasty cracking of the skin. I also managed to get a nasty blister on the sole of my foot that had me hobbling around for a few days. But those were just inconveniences really.

In most ways, the peripheral neuropathy also fell into that category, but the pain was much more intense, and for the first time it started to impact on my day to day activities. So, carrying milk from the fridge to the workbench to make a cup of tea was on the limit of my abilities. By the time I’d got the milk across the room I’d pretty much lost sensation in my fingers – much further and I would have been in danger of dropping the carton. Similarly, holding cheese or tomatoes to slice them after they had been chilled in the fridge was almost impossible. And though there has to be some entertainment value in the sight of me getting the ground coffee out the freezer in dressing gown and skiing gloves, I’ve never actually caught my family laughing at me – well, not yet, anyway 🙂

The major problem though, was still the ileostomy. During normal life I continue to be pretty much in control of my hydration & find balancing my fluids OK, provided I’m reasonably strict about my drinking, and taking my (pretty heavy) doses of leperomide and codeine. Unfortunately, when I take the chemotherapy drugs these add significantly to the strain on my system, and seem to push me right to the limit of what my drugs can help me cope with. At that point any small thing is enough to push me over the brink – be it eating something inappropriate, the weather being hotter than normal, or my forgetting to drink/take my drugs regularly enough.

At a simple level this results in my needing to drink more and empty my bag more frequently. But it also means that the bags themselves are under more strain, and they appear to have a tendency to fail more readily as a result. I suffered several of these failures during this cycle. Apart from the immediate distress and problems of dealing with that, there are psychological effects too; I found myself worrying that everything and anything I was doing might result in my bag leaking, even to the point of trying to sleep less soundly so I might have some warning of any impending problems. And there is only so much of that that you can take – it’s no way to live.

Still, tomorrow I see the oncologist, and then Tuesday I get my next IV infusion. This will be cycle four of eight, so I will be officially half way to through the treatment. Hooray.


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