DARK WINTER DAYS

It's been nearly a month since I last updated this blog and a few people have contacted me to check I'm OK - sorry for the gap. Overall life isn't too bad with me, all things considered. The new chemo regimen is slightly easier to tolerate than the previous one, and there have been no dramatic, disfiguring, or dangerous side-effects (which certainly isn't always the case, so I try and keep things in perspective). 

However, I have to admit that I'm finding it quite tough going at the moment. The main effect from the chemo is on my gut, which varies from uncomfortable to painful most of the time and can get quite distended and tender. Lying flat, and using hot water bottles to ease the sensation of achiness, help to some extent, but it's rather wearing, and it can be hard to get comfortable at night (though I'm lucky that I sleep pretty well all the same). My appetite is a problem: I do get hungry, but find it difficult to face food, and quickly feel unpleasantly full. I'm learning to manage this by eating small amounts more frequently rather than trying to have proper meals (including carrying around snacks with me all the time, as if I was feeding a toddler), and by using meal replacement drinks when necessary to keep my energy up, but there's not really much pleasure in eating, and the planning and effort required to ensure I get enough fuel feels a constant daily chore, and that's pretty hard on morale. 

Fatigue is an issue on this treatment too, far more so than I've had before - I manage to do most of my usual things, but am really having to stop and rest in between, and tiredness hits me very suddenly. Walking is OK but standing (e.g. on busy tubes, or waiting in queues) is very wearying; and my mental energy and concentration is a bit limited too, so it can take a long time to get round to acting on good intentions (such as updating the blog). 

Other niggles from the chemo are that I feel the cold quite badly and have to wear multiple layers of clothes even indoors, and I never venture out without gloves otherwise I get tingling and pins and needles in my fingers even on relatively warm days. Of course that's not a huge hardship in itself, but it's a daily reminder that I'm more fragile at the moment, and that I have to think differently from in the past when I took pride in being hardy and strong and not "precious" about my body. I've also had mouth ulcers on and off (chemo affects all rapidly dividing cells, which includes the gut lining and mucous membranes such as the mouth), which doesn't make eating any more appealing. And - ominously - the last time I washed my hair a lot more than usual came out, leaving me dreading it thinning right out like it did in spring 2011. 

None of these things are horrendous or life-threatening, and I'm fully aware that many people have a much harder time on chemo than I'm having, but all the same the combination of them all makes day-to-day life feel rather a struggle. I've been busy socially, which is lovely, and a very good distraction from preoccupation with my gripes (pun fully intended), but I find it hard to get the right balance. When I'm with people I tend to rise to the occasion and act (and often feel) like my old self, but when I get home I'm often exhausted and worry that I've overdone things. Friends have been very good about coming to me or my part of town to save me extra travelling, but it's sobering to realise that even sitting and talking for a couple of hours takes it out of me. I try my best to accept that this is simply how things are at the moment, but there are days when I really miss being able to just plan and do what I want without questioning my strength, and not having to think about everything and gauge whether it's good for me or not.

Added to this, there have been some unpleasant things to deal with, including some very complex orchestra politics sparked off by our conductor walking out 10 days before our November concert. Feelings ran high about who should have done what to foresee or prevent this (and being on the committee I couldn't not be caught up in the accusations from both sides), plus it was very time-consuming (and at times emotionally draining) to reach a consensus on how to sort things out, find a replacement and make alternative arrangements for the rest of the year. So much for my determination to step back and do less....

I've also had a falling-out with my acupuncturist (or perhaps it would be more accurate to say that she had a falling-out with me). I'd been seeing her since very soon after I was diagnosed, and she did amazing treatments, way more powerful than any acupuncture I'd ever had before; but we always had a slightly uneasy relationship, and it came to a head with her behaving in a very unprofessional way, after which I knew I couldn't carry on being treated by her. I'm now researching other practitioners and feel quite positive about making a new start with someone else, but while it was going on it was all very unsettling and disturbing. Despite my capacity for bolshieness I hate there being bad feeling, and I rarely have confrontations with people - and if I do I generally try very hard to put things right - so having two incidents in two months where for various reasons there wasn't the opportunity to smooth things over or repair the relationships has been very uncomfortable and a real challenge for me.

OK, I know you want to know how I'm doing, but I think that's enough complaining for now!

So I'll post again before Christmas to summarise the good things (yes, there are some!) in a separate update, and thank you for bearing with me in my splurge of woes!