Update on cycle 8 (part i)

So, a day and a half have passed, and as seems to be the norm, the symptoms have changed and morphed. No new symptoms though, so I know what to expect, and to some extent how to mitigate them. So not all bad news.

Tiredness is still present, but not as bad as when I first came home from the hospital. I suspect that the extreme tiredness I experienced then is quite temporary and a result of the infusion. I am also getting up earlier now too, as I’m trying to pull my weight and run the kids to the bus stop and school so my wife isn’t quite so overloaded in the mornings. That and the fact I’m getting to bed later (see below) means less sleep than I’ve been used to, so perhaps that’s also contributing to my general tiredness. The good news is that I can just go back to bed and sleep as required, so it’s simple enough to cope with for now.

Hiccoughs are back! Unfortunately they’re in the “long running attack” form, which is not good. They still seems to be triggered by me swallowing anything, and unfortunately my last set of tablets, which I take at 11pm, seem to be triggering hiccoughs that then run on for several hours into the night. Last night was 3 hours worth, which wasn’t much fun. It also means that I’m not getting to sleep as early as I’d like now that I’m trying to get up earlier and help out with the school run. Still, if these hiccoughs follow the pattern of previous cycles then hopefully they’ll fade away during the first week or so of the cycle.

My peripheral neuropathy is still the worst that I’ve experienced to date. My hands and fingers in particular got to the point where they were so painful that I ended up spending most of yesterday with skiing gloves on. I have to say, they might look silly, but the relief from the pain is wonderful. Unfortunately the gloves do rather limit what I can do; typing, reading, any sort of “fine tinkering” is out the question with them. My feet continue to be uncomfortable, and to blister and peel. As with previous cycles there’s very little I can do except put up with it and ignore it as best I can. The “slush puppie” sensations when drinking anything cold continue as with my previous cycles. I’m back to drinking a lot of tea, and taking my tablets with warm water again. I’m looking forward to being able to drink lots of long cold drinks, stuffed full of ice when I finally get off all these drugs!

I currently have very little sensation of taste again. C’est la vie. Combined with a complete lack of appetite, it’s back to eating mechanically again. While trying to look for the silver lining, I’m assuming that this is probably good for the diet anyway.

The inability to get warm seems to have gone away again. I’m wondering if that was another side-effect of the IV infusion. Either way, it’s a welcome loss, as it wasn’t much fun being curled up under a heap of blankets, feeling freezing cold and shivering, despite knowing that the temperature was perfectly normal.

The three bags of glucose seems to have done the business on my arm. The pain and swelling are going down fast. The sensitivity in my arm is much reduced, and I can now wear sweaters etc without discomfort. Looks like it will hopefully be all gone within another couple of days. So saying, the friend I’ve not seen for a few weeks who greeted me with a firm handshake yesterday didn’t get quite the expected reaction from me. He was mortified when I explained the situation too. So sorry John, I should have “ducked” your handshake and explained the situation, but I just didn’t think about it at the time!

Finally, I’ve kept the best news to last; my ileostomy output seems to have dropped on this cycle for some reason. I don’t actually care what the reason is, it’s good enough for me that it’s just dropped. It’s making the day to day management of my hydration etc much easier, and making life in general much more pleasant. It’s also a huge relief, as I would likely have been in real trouble if my output had gone even higher than it was on the last cycle.

If things continue like this through the rest of this cycle then I can see how to cope. Then I just need to start gently pushing myself back to full health; raising my exercise levels, allowing the drugs to steadily work themselves out of my system (apparently it can take several months for them to fully dissipate) and getting myself ready for my ileostomy reversal operation. That is rapidly becoming my next major target – as that is what forces me to take high doses of codeine, which is what prevents me from getting back to work and a normal life.

So, come Christmas I ought to be fully replumbed, off almost all my medications, and getting ready to go back to work. I feel like a kid again, looking forward to the arrival of gifts from Santa Claus. Except in my case the Santa Clauses all work for the National Health Service!


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