Friday, 5 February 2016

Today

Who knows? Not me! We never lost control
The Man Who Sold The World - David Bowie *

Check up... KFLC 195 ... Hb 11.7 ... Neutros 1.42 ..

Living in the moment on Big Corn Island, Nicaragua.
This is not a travel blog, and I still endeavour to stick to the rules - to give an honest account of my 'eloma, not indulge in publishing a diary of my life. So I will say just 2 things about the last couple of months backpacking, with the kids, through Costa Rica, Nicaragua, El Salvador and Ecuador.

The first is that I am profoundly grateful that we have the ability (financial and logistical) to be able to take such opportunities.

The second, from the perspective of one who no longer takes life for granted, is how important it is to live in the moment. Our lives - mine, yours - are too short to fritter away, toiling endlessly for the delayed gratification of all the things we might do in the future. There is only today. I learned recently that a client of mine - a few years younger than me - has died, tragically, in a car accident. So I'll say it again: there is only today. It is up to us to make today count.

It has been well over 4 months since I last knew my light chain levels. I set off travelling without the most recent score because the lab results had been delayed. The news today? Meh. My light chain levels are increasing linearly, more or less, from 135 in September, to 160 in November, to 195 today. My consultant now defines it as "biochemical progression" but not yet "clinical progression".

So the only question is how long that distinction holds. Apart from a brief infection and a lot of self induced rib pain after one too many Costa Rican "superman cables" (like this - but that's not me in the video), I've been feeling fine. And it is possible that my light chains could get right back up to 500, where they were before my stem cell transplant, without me feeling ill. Last time round, I recall I felt pretty crap at those levels, but it is difficult to tell, because last time round I had a lot of bone damage to contend with, as well as the legacy of 6 months chemo. Who knows (not me).

My neutrophils are ominously low, but they seesaw all the time. Still, 1.4 is not really good enough. Much lower than this and I would be clinically neutropenic. And I'm a bit anaemic too. So, we're upping my blood test frequency, to keep an eye on things. And if it doesn't improve, I have the usual threat of a BoMB to look forward to, to check that we're not being fooled by my myeloma having mutated into a form that no longer secretes so many light chains.

The process of getting appointments and blood tests to coincide seems to be getting no easier. Much to-ing and fro-ing today. We've booked in an appointment in 5 weeks time. But the system will only accept even numbers of weeks. (Why?) So right now the appointment exists in my diary and the doctor's, but not on the hospital's computer system. Blood test requests have to be posted against an appointment. I now have (future) March blood test requests posted against my (previous) February appointment. I suspect this will not work out smoothly when I attend the phlebotomoy department. I point out to the doctor, again, that the system is broken. He agrees, but then adds:
"Of course, the most important thing is that I get your bloody results"
I can concur with that.

* Ben has been studying the solar system at school, and his class did a quite brilliant assembly on the subject, as part of which they played and sang "Star man". I was concerned that 10 year olds don't know the difference between David Bowie and David Walliams, so I have enjoyed the excuse to play some of my favourite Bowie songs at the breakfast table. (I don't have any favourite Walliams songs.) It is rare indeed for me to feel genuinely affected by the death of a musician. But the world is a slightly drabber place, without David Bowie.

3 comments:

  1. Dear Alex,

    I don't know if you even remember me. But I just wanted to reach out and let you know that I still think of you and your lovely family and still am sending you my best juju vibes for your well-being. Myeloma is such a sneaky bastard, as is all cancer. Totally sucks. I will send you lots of big hope that all goes well with your next check-up. I am so happy for you and your family to have been able to enjoy your travels. And I am very sorry for the death of your client; I appreciate the reminder that living well each today we are given is paramount.

    with Love and Best wishes,

    Karen (Sutherland)- from across the Pond

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    Replies
    1. Wow, Karen. I think about you (and Hugh) more often than you might imagine. It is lovely to receive a message from you - I know at least that you are getting on with life. It is so nice to hear from you.
      I hope your remission continues. Love and best wishes to you too.

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  2. Ah, Dear Alex,

    You've given me such a lovely boost with your kind words. Thank you! I am still in remission with both cancers - don't think much about them - widowhood is pretty much all consuming. But I am so fortunate to have family and friends, such as you, to cheer me on to finding my "after" me. Keep writing dear man, and I will keep reading.

    Love and Best Wishes many times over,

    Karen

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