The last few weeks have been hard. On top of everything else, a virus finally got the better of my immune system at the weekend. In combination with the aches, the anaemia, the endless cycle of drugs, the long time horizon in front of me… it all adds up. I suspect that the relentless bloody anaemia is the real villain. I’m getting by with about a third less blood than my body really needs. I’m heartily sick of the whole thing. No matter how soon now it feels better, it will not be soon enough. I posited an idea to Marisa the other day – conjured out of my imagination – that maybe the sudden death of myeloma cells could be a cause of sickness and pain all of its own. It turns out, with a little research, that this is a real thing – “tumour lysis syndrome”. So maybe I’m feeling unwell because there is a lot of dead stuff in my bone marrow, and associated crap swilling in my depleted blood. That’s one possible, positive, explanation for where I am. But whatever the reality, I simply have to persevere. It’ll be a month or so before we’re in any position to review progress.
So… I’m feeling a little better today… my head is above the water… I want to take the opportunity to acknowledge the group of people who are quietly, unobtrusively propping us up, right now.
I’m writing this post to say “Thank You”, to you.
You know who you are.
When I’m least well, it actually falls harder on Marisa and the boys, than it does on me. Because they have to keep the normality going. Home life is not the same with a partner/parent who is only half present. One who rarely makes it to the breakfast table. My role, by comparison is straightforward. I just have to take the pills. There’s not a lot of point me moaning about it, either. Myeloma looks a lot like laziness – as long as I just lie around doing nothing, I’m normally OK.
So I am very, very grateful to all of you who are doing so many things to make it less arduous for those who have to live with me! You are oiling our wheels by helping the children get to and from their schedules. You are bridging gaps (or papering over cracks) by including them (taking them out sledging, for example, last week). You are ensuring that they get out of the house, and that their lives are not constrained by mine. You are feeding us – heart (cake) and soul (meals). You are there for Marisa to hang out with – whether its a mid-week evening or a last-minute loose-end Sunday. You are making plans with me, and then not caring when I endlessly cancel and reschedule. And a load of other things too.
Taking an interest in us. Checking in on us. Looking out for us.
You are quite a big group of people, which is very flattering. Some of you are further away, from where it isn’t always easy to make a hands on practical difference. But it really does make a difference, to us. All of it. Every outstretched hand. I cannot conceive a better definition of friendship. I won’t get to thank you all face to face. Anyway, it would undermine the whole interaction if I did. So…
Thank You. All of you. I cannot really express how much it means to me.
Maybe I was naive to imagine that I might sail through this chemo less grimly than last time. Though I suspect, with a little hindsight, this will transpire to have been a relative blip. However it pans out, I know a much more profound “blip” awaits us later in the year when I have to go through another SCT. Only after that will we be able to stand on our own 10 feet again. In the mean time, stick with us, please.
There’s some very nice soup in the fridge, which is where I’m going now.
Today is my 5th “birthday” since my SCT in 2013. Almost five years treatment free. Hopefully, that will be the pay off from SCTv2 too. I looked back through 5 years of posts on dialm, wondering about the most important question… which artists get most airtime. Only three have featured three times: Neil Young, David Bowie, and Tame Impala (who are a special case… where dialm started). A few more have appeared twice: Foals, Primal Scream, Ride, Rudimental, Scissor Sisters, Simon & Garfunkel, Teenage Fanclub, The Shins, Smashing Pumpkins. That seems like a fair snapshot of me. My music collection always did have an unexplained overweight to the letters P, R, S and T. Is this relevant? Is it even interesting? I have a feeling the steroids are kicking in again… which will be my subject matter when I next write…