Biopsies, Blood Bottles and Books: All in a Week’s Work

We’ve had some encouraging news.

Not that the fact that I’ve gone back to uni and all that isn’t encouraging, but in between the stress of third year, the constant phone calls home in which I’m internally a bit like omg-what-if-I’m-dying-and-no-one-of-any-medical-calibre-has-noticed-yet-but-my-parents-do, the complete stress of moving my hospital records partially over to the Heath at Cardiff from the Churchill (which I cannot even take any credit for myself, so thanks Dad, love you and stuff), and meeting all the new nurses there whilst still at least vaguely pretending to keep up with what’s going on in the Rugby World Cup, things had sort of ended up looking a bit doom and gloom.

But I’ve been at home for an action-packed week of one big fat bone biopsy, a clinic meeting, lots of looking at numbers on blood forms and bottles of my blood, and trying to fit in some uni work in between.

And as I said, I was nervous about the biopsy, I’ve been having a great time in Cardiff and I’d silently, but effectively, worked myself up into a state of mind in which I was just convinced beyond reason that they were going to tell me to drop out, and start treatment straight away.

This is the part where I have to apologise to myself, and also remind myself that I’m lucky, because obviously this did not happen.

The biopsy results were fine, my blast cell count is still low enough, and I’m overall relatively stable, as long as I keep having regular transfusions in Cardiff. This is obviously good news. It appears my bone marrow likes to give me regular little frights, as I convince myself I’m getting worse at the appearance of a headache, and my blood counts drop and I panic and struggle to heave myself up the stairs again, but then as soon as a doctor approaches my hip with that huge great needle my bone marrow just starts doing its okay, fine, I’m sorry, I was just kidding, I’ll behave routine again, and overall it turns out I’m doing alright.

So now we have to start thinking long term. Again, good news, as there was no long term plan in place when I was diagnosed. Now we’re at the point where we understand my disease a little bit more. Obviously the body is unpredictable, but I’m being watched closely enough and on enough supportive care that hopefully the second that cancerous cell count starts to creep up any more there’ll be consultants and the transplant team stamping all over it. Metaphorically, of course, but maybe physically, if they need to.

Anyway. I love a plan, me, so this is right up my street. One thing I’ve taken away from the consultant’s office is that I just have to look after myself and hope that my body isn’t going to get any worse, because we’re all now praying, praying, that I can make it until the end of my degree transplant-free. That’s right, no dropping out, no chemo, no scary wires in my body until June. Think how many portions of cheesy chips I can consume in that time. So I’m pretty chuffed.

Another thing I’ve taken away is an update on the whole donor situation. So they’ve found a donor. And the reason I’m not as excited about it as I maybe should be is because this guy is a 9/10 match. Which is wonderful and great and maybe it’s more than other people get, but the perfectionist in me wants a 10. The golden top level of the lowest-risk transplant possible. You can all understand that, right? I’m not all ungrateful, I promise.

The long and short of it is that you and I should keep plugging away and encouraging people to sign up to Anthony Nolan if you’re under 30, or Delete Blood Cancer if you’re between 30 and 55. Easy. And I’ll stop there, because I know that you’ve got the gist now.

While we’re thinking long term, my doctor persuaded my unwilling self that I really do need a transplant, because he put all my symptoms and factors and health and everything into an iPhone app to calculate my life expectancy (when you’ve seen the inside of a weird and scientific and futuristic enough hospital department as haematology as much as I have you learn not to question certain things) and calculated that, untreated, I have a life expectancy of eight years.

Eight.

I mean, I don’t really know how to feel. Eight years, in comparison to a lot people with cancer, is brilliant, it’s long term, centuries, really. But then I look at my age and I look at what my friends are doing and how I wanted to be thinking about settling down and maybe having a family or whatever in eight years’ time and I was a bit stumped.

I googled what you can do in eight years, just to entertain some worst case scenario nightmares of mine.

I could get married, or have kids, or travel the world in that time. Google told me that today is Android’s eighth birthday. I mean, I can’t pretend I care too much about that, but my point is that it feels like Android have barely been around.

I mean, eight years isn’t awful, it’s not. I know it’s not. But it isn’t great, either, is it?

So help me find that 10/10 match please, people. They’ve got to be out there somewhere. I mean, if it’s not too much trouble, because I am British and polite and all that.

Beyond that, I’m off to be happy and positive again; help myself to free fruit at home, write an essay and maybe hope that we can go on a family holiday before Christmas if I remain stable.

And in the long term, I’m gonna write enough essays that I can graduate whilst bossing MDS and then let my body get invaded by science and new cells and then finally, go out into the world and live until I’m a hundred and eight, not twenty eight.

alicebyron

2 Comments

  1. Hi Alice, I went to your Gran’s coffee morning today to raise funds for research and treatment. I grew up with your Mum and your Aunts. Your Gran is my Auntie Val – my Godmother and Colin was my Godfather. We haven’t really met – you were a toddler when I called at your home one day. Anyway the connection inspired me to register at DeleteBloodCancer and reading your blog, confirmed my decision was right. So good luck with the war on this – I am thinking of you and will send my swab straight off. I am going to ask some others to get involved too. Who knows – but what is clear, the more people who do this, the more chances you and others have to getting better.

    • So lovely to hear from you, thank you for signing up and attending the coffee morning, it’s so kind! x

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