March 16, 2011

Bone Marrow IV – The Five Year Gap

Sign up to donate marrow here – www.anthonynolan.org/

Later in 2006

The razor sharp amongst you might have noticed that much of this story so far took place in 2006. Signing up, getting told I was a partial match, and giving test samples of blood all took place over a relatively short period five years ago. And then… nothing.

I didn’t donate marrow in 2006.

After the samples were sent off I waited and waited, albeit in a very passive sort of way. As so often in the process I simply shoved it to the back of my mind, although it crept forward occasionally. Each step forward was harder to shake, harder to ignore. Signing up to a register is ultimately a very impersonal act, but getting tested to see if you’re a match to another person, there’s nothing abstract about that. Somewhere out there is a person who is sick, and though I don’t know them, I’m not so totally incapable of empathy that I can’t appreciate that theirs is a desperate state to be in.

No one I am close to has, to my knowledge, had leukaemia. People have had other cancers. It’s shit, shit and unfair, and strikes people who don’t deserve it, don’t need the pain and the danger. But I don’t need to tell you that. You know. It makes people very very ill, and both the treatment and the disease itself are harsh and painful.

And so it was that when I got the letter, I assumed the worst.

I was never officially told I was the match. There was no phone call or piece of paper saying “Congratulations, your jelly is just the flavour our party requires”. Or perhaps there was and I managed to miss it. The tendency of students to move around constantly, have a new address every few months means post is often lost or left on the floor of a house you used to live in, whilst the incumbents walk past it daily, each time promising they’ll sort it out tomorrow. I don’t know. I do know I got the follow up letter.

The follow up letter was addressed to a match. It was addressed to me and presumed I knew I was the match, that I knew I was the one with the marrow that offered the most. But it wasn’t telling me to get ready or to start preparing to produce stem cells or any of that. It was a relatively short letter which seemed to speak of a tragedy I was only peripherally aware of. It informed me that the transplant recipient was too ill to have the transplant.

Everyone I have ever told this story to reacts in the same way at this point. There’s something in those words which strikes a chord with people. The great unspoken between the lines. If you are ill enough to require a life-saving transplant, then you are really ill. If you are too ill to have a life-saving transplant, then things must be even worse than that. Without the bone marrow, went my thought process, this person will die, but they cannot have the bone marrow. Not unreasonably I assumed they had died.

Three people a day die in the UK because they need a transplant and the organs (not just bone marrow) aren’t available. It’s a statistic used in drives for organ donation because it says nothing of the personal tragedies behind the stat, but it doesn’t need to. It’s a lot of people, and some of them may well have lived long lives if they’d had a chance.

It didn’t feel good to have that letter. Neither myself nor the people at Anthony Nolan had done anything wrong, hell, no one had done anything wrong. The enemy was that blasted disease, and it seemed it had outpaced us all.

March 2011

I sometimes tell the story of the bone marrow donation which wasn’t. Ok, I tell a lot of stories, I talk a lot. But that one is one I tell because I kind of hope it might have a positive impact. It’s not particularly funny and it had a sad ending. It won’t get people into a partying mood, or raise spirits, or make good dinner conversation. But it sometimes felt right to tell it because they need those men and those non-whites to sign up. If my experience was anything to go by they need white girls too.

I told the story again in the middle of February 2011. Just another recital. Nothing too serious. Then on the evening of 28th February my phone decided to play silly buggers and refused to receive any calls. I didn’t know this until I got home from work to find it hadn’t rung and someone who had then left a message. The message started somewhat unexpectedly, “Hello, this is a message for Holly Cruise, this is [name] from the Anthony Nolan register, the bone marrow register, can you please give me a call on [number] tomorrow, thank you”.

Twice? The white girl no one wanted was needed again? For another person? Was I a really good match cos Celtic women were particularly prone to leukaemia or was it coincidence?

Naturally the next day couldn’t come soon enough, I needed to know what was going on. So I rang back and spoke to the lady from Anthony Nolan. I was needed. I was a match in 2006 (which I’d worked out) and I was needed because the patient was sick again and needed the transplant this time.

Wait. The patient was sick again. The girl (I think I heard them referred to as “she” during the conversation) had been too ill for a transplant five years earlier, but was now in need? Had she been that critically ill for five years, too sick for a transplant the whole time? Had she recovered suddenly to the point of not needing the marrow but had now slid back into a bad state? I wouldn’t wish either on anyone, although I hoped it was the latter. Five years of being critically ill is a nightmare no one deserves.

It wasn’t even a question really when the lady asked if I was still willing to go through with it. Of course I was! I thought this girl was dead. I didn’t even know her and I was delighted she wasn’t. I would definitely help out. Definitely give what I could, which in this case was more than just platitudes and wishes, it was actual, useful jelly. Was I willing to help? Yes/ Was my health still good? Yes. Was I aware of what it would involve? Yes (stabbity stabbity).

The lady said it was up to the surgeon now to set the dates. I would receive more information in time. She emailed me the information leaflet. I read it, then panicked that I’d made a mistake and that the liver ‘condition’ I was diagnosed with in 2008 might be a problem. Yeah, I’m a teetotalitarian with a liver condition. Said condition is Gilbert’s which has virtually no symptoms and rarely impacts on the lives of those who have it, but I was worried it might impact here. I needn’t have worried, it wasn’t a problem.

So now I’m just waiting for dates. I keep thinking maybe I should tell them when I’m on holiday, or that if illness on my part will cause problems that we need to avoid September/October, the months which take quite a toll on those who work at universities, as the students come from all over the world bringing as many versions of the cold/flu as they can muster. I even decided to write about it, here, because I thought it might be interesting.

I don’t know if I will get as far as donating this time. I hope so if only because I don’t want this mystery person to die. It could be months before anything happens, I’m sorry I have no more narrative than this to give you at this time. But if anything more comes up I will write about it. There might even be pictures this time, or at least pictures of the actual process rather than the slightly random ones I’ve used so far. I might use the word “stabbity” a bit more as it has proven strangely popular. Or I might not. It might go no further once more. But in any case, I want at least one of you reading this to sign up to the register. Please.

It’s the least we could all do.


- 3 comments by 1 or more people Not publicly viewable

  1. Rachel Crofts

    Holly – this was fascinating. I am on the register, and am terrified of what would happen if I were a match (I could never say no, but I’d freak out A LOT). I wish you oodles of luck, and the same to your mysterious stranger.

    16 Mar 2011, 13:49

  2. Mark

    This is wonderful. And I’m signing up as soon as I move house – only three years until I stop being valuable, but I am a bloke at least!

    16 Mar 2011, 14:14

  3. Claire

    Goodness. Very interesting post(s). I will urge my brother, who donates blood all the time and loves feeling valuable, to sign up to it. Hey, I’m Celtic too, maybe they’ll be interested?
    Got to say, I think more of these posts are needed as I didn’t really know what bone marrow donations entailed, I assumed it involved taking something out of a bone… Either way, I’m slightly less confused now…

    17 Mar 2011, 09:04


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