Heading Towards Transition – 1 March 2016 (SCT Day +84) (Cancer and Me 68)
It feels like about the right time for an update, even though it doesn’t feel like there is much of interest to say.
When I saw one of my haematology doctors and the nurse specialist in Basingstoke Hospital on 27th January all was well. The only thing I asked about was the ridges that have appeared on my fingernails. Not a concern really, more just curiosity. And apparently it’s chemo-related. The nurse specialist said that quite a few patients who have had more than one cycle of strong chemo can count of the number of cycles by the number of ridges on their fingernails. You learn something new all the time!
Apart from politely checking the blood counts (all normal) and going through the side effects that we all expected – mainly fatigue – it was all about admin. I reminded the doctor that he had to book the PET CT scan for Day +100, and he noted that down, as well as making sure that he prescribed the Aciclovir and Co-Trimoxazole for another few weeks. Future prescriptions for the remainder of the six-month course would be the responsibility of my GP, so I made a note to make an appointment to do that.
And as we discussed dates for various things he said, “you don’t have to come and see us again for another 3 months. You need a break from hospitals!” I thought that was very kind and thoughtful, because to be honest I was feeling like I needed a break from hospitals! I remarked that I hadn’t had a 3-month gap between appointments since mid-2012, nearly four years ago.
So I have a PET CT scan on 24th March, which is actually SCT Day +107 to be precise. And then I go for a follow-up appointment with the Basingstoke haematologists on 20th April. I expect those to be fairly mundane, but I can guarantee there will be some nerves just out of habit! And apart from that I have a blood test next week, and another one just before my hospital appointment.
As far as everything else is concerned, residual side effects are almost not worth mentioning. But I will mention them anyway, for the benefit of other transplant patients who may want to compare notes.
The hair on my head and beard is starting to grow back, but is patchy, so I’m continuing to shave it all off once a week until it looks like it’s going to grow evenly.
One of the annoying little side effects that I’ve noticed over the last couple of months, and which might be starting to fade away now, is dry skin on my hands and face. I’ve been using moisturiser, but one of the frustrations is that my fingerprints have disappeared, so that I can’t use TouchID on my iPhone! You only realise you use something a lot when it suddenly doesn’t work any more!
But apart from that it is literally now down to fatigue. I feel like I have a battery that has a reduced capacity. By that I mean that I don’t feel tired all the time. I am able to get up in the morning, walk the dogs, go to the shops, meet people for coffee, and do everything normally. The frustrating thing is that I can’t keep it up for a full day. I grind to a halt shortly after lunch, and I have to go to bed for between one and two hours in order to recharge and get going again.
So I can see why the Southampton consultant said that I’d be ok for part-time work at some stage. If I was in a permanent job, and simply off sick, and if I worked close to home or was able to work at home, I think I probably could start to work mornings at some stage soon. But my work is not like that. I’ve explained previously that I need to be fully fit for full-time work before I can start to look for a new job, so my recuperation is going to take a bit longer. How much longer is anybody’s guess.
This is very much how I felt in 2010 after the treatment had finished, but this time I don’t have those little niggles that undermined my confidence. Back then I described it a bit like “free fall”. My diary has gone from being driven by hospital tests, consultations and treatment, to being completely empty (almost).
There is no big deadline date to work to. I just have to gauge when I feel up to work. And that will mark a transition in mentality, rather than a change in circumstances.
It will be a transition from being unemployed and unable to work to being unemployed and able to work. I’ll almost seamlessly move from being “off sick” to being unemployed. And being unemployed represents the other unpleasantness that I have history with in my life (1991-92, 2002, 2006, 2008, 2009), so I am not looking forward to it at all.
In the meantime, I am nearing completion of the two books I’ve mentioned before:
Cancer and Me – merely an ‘omnibus’ version of my ‘Cancer and Me’ blog entries (such as this one), with very light editing;
Facing Cancer with Faith – more of an autobiographical account of my six-year cancer battle, interspersed with twenty-odd Christian reflections on how my faith applies to my experience of hardship and illness. Most of those reflections are already on my blog somewhere, but there will be some new ones.
Watch this space! There will be more news soon, God willing.
PS. I almost forgot – I’ve now put some photos, mainly relating to my stem cell transplant, on a separate page on my website. Look for the ‘Cancer and Me – Photo Gallery’.