As far as side-effects go, week two has been quite straight forward. The anaemia is something to keep in check – I still struggle with estimating how much I can do before the inevitable breathless ‘wall’ hits me and I have to lie down for a period, but that’s a learning curve. The only other thing is avoiding infection, as my WBC have been at their lowest, on the up now I hope.
So, I’ve managed all of the work on the training programme we’re currently involved in running without any problems really; I am impressed with myself. This is clearly due to all of the ‘spoons’ training I’ve received from Shirley – my resident ‘spoon’ expert. Overall, the programme is going very well; Shirley and I are hugely enjoying spending time with such fascinating people from all over the world – how lucky are we. We’ve only got a couple of days left doing training, but we’ll enjoy them.
The biggest thing on my mind over the last week has been the impending end of my chemotherapy. A week on Friday I get my last infusion and I am now pretty confident that I know how things will pan out regarding to side-effects; I’m not complacent – everything will be in place for a trickier outcome, we shall see. I do intend to celebrate the ‘last infusion’ on the day while I’m still ‘up’ on the steroids; this really does feel like a major milestone. However, I’ve now opened the door into ‘what next’? During the chemo period, I’ve had lots to do, coping with side-effects, administering injections (still daunting), avoiding infection, managing my ‘spoons’, etc. – quite busy really. Now I’m moving back into a period of profound uncertainty. There’s no doubt that my recent numbers, how I’ve responded to chemotherapy and how I feel in myself, all seem to indicate that things have gone well, but it’s all circumstantial really. The ‘acid’ test will be my next PET scan and, from what I have read, that’s likely to be 3-6 weeks after the end of my chemotherapy, so I’m anticipating the start of October at the earliest; that’s a long time to wait.
Clearly, I need an ‘uncertainty’ management plan, one which avoids (or at least reduces) unproductive and meaningless speculation about how successful (or unsuccessful) the chemo has been, but gives me some direction and some ‘activity’. I managed my previous period of uncertainty, between diagnosis and my oncology consultation, by reading research papers and educating myself – the innate research academic in me. This research prepared me very well for my oncology consultation and I ended up on a treatment programme that I would have given myself based on my reading, so that was gratifying. So that’s a given and I’ll be starting next week.
I’m also planning (and need) to start some more serious exercise, which has been very hard to manage during chemo because of the fatigue and anaemia. Beyond that, our ukulele club will start again in September, we have a festival to attend in mid-September and then I need to prepare for delivering ukulele workshops and maybe another programme on the chemical plant at Surrey University for the beginning of October. Most importantly, there will be lots of time for Shirley and I to hang-out together and appreciate one another – overall, I think all of that will keep me busy!
