Well, this week’s been interesting. My tiredness continued to abate over the weekend, but then the anaemia kicked in. For me, the anaemia manifests itself quite differently from the fatigue and tiredness. Generally, I feel quite fine, then I’ll do something – climb the stairs, carry from some kit, etc. – and I can actually feel the energy drain from my legs / arms and then the breathlessness kicks in. It takes a little while to recover and then onto the next activity. It’s not really an issue about going fast or slow, it’s just the degree of physical effort. I also look odd, washed out, yellow, tired (although I’m not), this does not impress Shirley. Anyway, the anaemia started on Sunday and ‘peaked’ on Tuesday, now I’m feeling somewhat better.
Alongside that, I’m in my period of being careful regarding infection because of my low WBC. I’m finding this fairly easy to manage in most situations. It’s easy to manage when people know about my cancer, but hardest when I’m in a situation when people don’t know and it’s not really reasonable to tell them because our interaction is so short.
As has been the case, through all the cycles, I get a little down around the mid-point of each cycle, mainly because I have to rest a lot, but not necessarily sleep, so I have lots more time to reflect on my situation. Objectively, given my diagnosis and the extent of the cancer, I am very positive about the likely next stage, a period of maintenance with a median progression free survival of about 3.5 years and, of course, I hope to be on the right-hand-side of that bell curve and get 3.5+ years. BUT, only 3.5 years, Cassidy will only be in her late 20s, Shirley will only be in her late 60s, I can’t help but reflect on what I am likely to be missing out on. Thankfully, these are pasting thoughts and I find it relatively easy to move my mind into the positive space of ‘living’ in the time I have – however long that is, there are no guarantees for any of us.
In that vein, Shirley and I are off to Chepstow today for the Green Gathering. This is a delightful festival, very ‘hippy’ and ‘alternative’, with music, comedy, poetry, performance, workshops, crafts and progressive politics – what’s not to like. We’ll be in our ‘car / camper van’ again and now we have a much better idea of how to set everything up – it’s going to be great. And, when we return, Shirley and I will be working on the course we enjoy the most each year, training 32 prospective ‘chemical weapons inspectors’ from 32 different countries … more on this next time!
