All entries for March 2011
March 16, 2011
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.
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.
March 09, 2011
Need I include the disclaimer that I don’t normally write about my real life? Well, I don’t, but I don’t normally let people take my internal organs out for use elsewhere…
Sign up to the register – http://www.anthonynolan.org/
2006, summer and 2011, March
People are fascinated by the Big Needle. The Big Needle is a symbol. The Big Needle is a celebrity. The Big Needle is only part of the bone marrow donation process anyone seems to know about. Both in 2006 and now in 2011 it’s what I hear most often from people when I tell them what I am doing.
“Doesn’t that involve a Big Needle?”
“I hear it hurts when they use the Big Needle.”
“Wow, I wouldn’t do that, not with that Big Needle.”
The Big Needle appears to be the iconic element of the process, a sharp, stabby certainty, headed straight for the hip bone of those willing to give. I knew about the Big Needle when I signed up for the process, but like all the unpleasant elements of donation I blithely ignored it because I really didn’t think I would ever be called upon to donate and thus worrying about the specifics wasn’t worth it. I do a similar thing with my legs – I have one leg longer than the other and my hips are out of alignment. A doctor once told me there was a good chance I might need a hip replacement at a relatively young age (40s?!) but they weren’t sure. They could be right, but there’s no point fretting about it if it’s not certain. And merely being on the bone marrow list wasn’t a guarantee that Big Needle would be part of my life so I ignored it.
And when I couldn’t ignore it anymore, I discovered that as with so many icons, the Big Needle had lost relevance in recent years.
Ever had tuberculous cervical lymphadenitis? Probably not, it’s more commonly known as scrofula, and is the sort of disease which modern historians get to read about and modern doctors don’t get to treat very often. When it does pop up it gets beaten down with antibiotics. In the old days the cure was more elaborate, the monarch of the day was required to touch the sufferers. Scientific advances ensure that we don’t need Elizabeth II to high five the contagious, and funnily enough scientific advances have resulted in the Big Needle losing some influence in the world of bone marrow extraction.
“I cannot believe I have to touch you scrubbers. Helen Mirren wouldn’t stand for this shit.”
I found this out courtesy of the booklet Anthony Nolan sent me. It was full of happy smiling pictures of donors and recipients. How can anyone refuse a process where the outcome is glossy smiling photos, complete with inspirational captions? Ok, I’m being flippant, but these booklets will have been market tested and designed to perfection, they are precision tooled to make the donor feel less apprehensive about the process, to banish Big Needle.
There are two ways of donating.
I didn’t know this. The other way was even presented as the preferred method. Above Big Needle. The fearsome beast wasn’t even first choice, it was sat on the medical substitute’s bench, kicking its heels and periodically running up and down the side of the hospital, waiting to be called on. A plan B.
Plan A was much more futuristic. The donor would be injected with human growth hormone to make their marrow overproduce stem cells. The spongy mass of the marrow is less important than the tiny parts of marrow yet to come. After a few days the recipient would travel to a hospital where they would be hooked up to a machine, one tiny needle in each arm, with blood drawn out via one tube, filtered through a machine to remove the stem cells, before being put back into the donor’s body via the second tube in the other arm. I may or may not have made this up, but I came away convinced the process involved a centrifuge, with the prospect that my blood would be spun around, with stem cells flying out of it into the collection point, before being returned. The idea that my vital fluids might enjoy a ride as part of the process sounded fun.
The Big Needle was for when this didn’t work. No problem, I thought, if it happens I’ll just produce lots of stem cells. I’ll sit at home, producing really hard. In 2006 I figured I could study in the library, but produce stem cells at the same time. Essays and stem cells. Not a problem, and you don’t even have to footnote the stem cells. Now, in 2011, I’ll produce them while I work, or while I stand outside as the fire alarms go off, a strangely frequent event at work right now.
And hey, even if the Big Needle was needed, there was general anaesthetic for that.
Actually, the Big Needle is pretty big when you put it like that…
Knowing the procedures made them less scary. Is this what my ancestors felt the first time they found a dead boa constrictor and thought “Wow, I know it’s eaten half the tribe, but look, it’s just a tube with a silly face, that’s not scary”. Mind you, my ancestors ended up in Ireland, one of only two countries worldwide with no native snake species, so perhaps that’s a bad example.
Whatever, even if it did involve the Big Needle the equation was simple: stabby needle-induced hip pain for a week is less painful than dying of leukaemia. There is no other way to look at this. If I was a match I would do it, no matter what the short term pain. The person who needed marrow needed it more than I needed a pain free week.
But I would probably whine about the pain anyway. I’m not a saint.
And in the ebbing days of summer 2006, the last really good summer I remember us having in Britain, I waited to see if that one-in-four chance was going to come in. Was I the match? Would I meet the Big Needle or have to sit in the library producing stem cells?
March 07, 2011
Once again I must protest that I’m not keen on blogging about my actual life but after the first of these posts it turned out a friend had made it to this stage too, so maybe it’s more common than I first thought. I dunno, it’s never been the topic of any polite dinner party conversation I’ve been part of to talk about marrow donation, although I’ve been to about two polite dinner parties in my life (once by mistake) so it could be common.
Do not lose sight of the importance of this link – http://www.anthonynolan.org/
2006, a few weeks later
I’m scared of donating blood. Yes, I know this is about the other donation, the one with the HUGE needles, and I know donating blood involves small needles. I have no issue with needles. I wasn’t the kid in my secondary school who reacted to their BCG jab by turning green and passing out. I used to watch the injections as they went into my arm, fascinated by the vanishing liquid. No, it’s not the mechanics of blood donation which bother me.
No one knows what causes migraines for sure. Like all migraine sufferers I know roughly what triggers them, but how extreme stress or not-so-extreme food deprivation translate into blindness, splitting headaches and projectile vomiting is a mystery. All a doctor has ever been able to say to me is that it might be related to chemical levels in the blood.
So far, despite my massive clumsiness I’ve never lost a significant amount of blood in any incident. Even the time I sliced my thumb in half (yes, I am an idiot, I know this) it wasn’t a bloody as it could have been. Well, it didn’t cause my blood-phobic housemate to pass out, so it can’t have been too bad. It wasn’t Ichi The Killer levels. The upshot of this rambling is to say that I’ve never donated blood because I’m worried it might set off migraines. It’s irrational, it probably won’t, but I don’t know. Perhaps once I’ve given marrow I should make it a target to give blood within six months to prove it. Who knows.
The aftermath of my thumb slicing incident. Blood all cleaned (except the stuff we couldn’t clean so we put furniture over it so the landlord wouldn’t notice.
But my other worry is I don’t have enough blood. And this is where I find myself back in the summer of 2006.
When people need bone marrow donations their family is screened first. It makes sense, you’re more likely to find a match with close relatives than random strangers* like us names bobbling around on the Anthony Nolan register. But sometimes it doesn’t work out and then it’s pot luck. To the register. To sign up we gave small pots of blood, not enough to run more than a couple of tests. So when a person in need of a transplant comes to the register they tend to test a few partially matching people more closely to find the best match.
It had been only a few months since I had left the students’ union after signing up. I’d already put it to the back of my mind and can you blame me? I was a white female. They didn’t need white females, they’d said so. Had there been any men or any non-white people I would have been sent away. I’d have gone home to Leamington and wondered why I still had no feeling in my thumb (the sliced in half one, the feeling still isn’t more than 40% today, five years later). I’d have watched TV, done my essay, eaten. I wouldn’t have been one of the four people on the register that were a rough match to an ill person somewhere in Britain.
I laughed when I found out I was a partial match. “They said I wasn’t needed!” I told blood-phobic housemate, “And here I am, a partial match”. It was a one in four chance I might be the best match, which are good odds if you’re betting on horses and bad odds if you’re betting on football (yeah, I worked in a bookies for a while).
Like these but twelve of them.
To find the best match involves tests. Tests require blood. I was sent a box of twelve small pots, like the first small pot from signing up day. Only this time there was twelve of them. I took my box of goodies to the doctor’s clinic to be filled and the nurse laid them out. They had different coloured tops. They looked like pieces from a strange boardgame which only served to make it even more surreal as the nurse put a needle in my arm and filled them one by one until all were fu… no, wait. The last three or so weren’t full. We couldn’t fill them. She prodded my arm once or twice but for the last three (look away squeamish folk) my blood merely dripped in, rather than leaping forward with enthusiastic abandon as it had done initially. The nurse smiled and assured me it was normal, and maybe it was. Maybe twelve pots is a lot to ask. But my irrational side was in its element, “Look! You can’t possibly donate blood, you don’t have enough for yourself! How could someone as pale as you possibly have enough blood”. I am very pale it’s true. Even other Irish people think I’m pale. I tried to ignore the irrational voice, especially as the nice, rational nurse said it was quite normal not to fill all twelve pots.
My blood was posted to London to be prodded and probed. I didn’t have a migraine. I didn’t feel any change at all, which at least reassured me that no one was performing any voodoo on my platelets which was nice of them. So I went back to work. It was summer and time to work my arse off because that’s the lot of many students these days. Work work work whilst they bleed you dry. At least I’d been bled (slightly) dry for a slightly better cause.
And now it was time to wait and see who was the best match…
*Reading about family matches and donations I found the fascinating case of Karen Keegan, an American who needed a kidney transplant. When her children were tested to see if they were matches the results said they weren’t even her children. It turned out she’s a chimera, one person with two sets of DNA made when two fraternal twins fuse in the womb to grow as one person. Her womb and her blood were produced from different embryos but lived in one body. Biology is interesting.
March 04, 2011
Writing about web page http://www.bbc.co.uk/news/uk-12640636
The government wants to move the May Day bank to either St George’s day a week or so before, or to ‘Trafalgar Day’ in October. Now there are some who might suggest that targeting the May Day holiday, a strongly socialist and pagan linked date, rather than the other May bank holiday is a bit ideological. Perhaps it isn’t. but it ignores one simple and undisputable fact – we don’t get enough days off compared to the rest of Western Europe.
The TUC have complained about this for years, saying in 2001 that with a European average of 10.8, Britain still only had 8, a number which would have been part of the European average, thus dragging it down.
So why not let us have another bank holiday without ditching an existing one? Some suggestions:
Pankhurst Day, 14th or 15th July
“Votes for my homegirls or else!”
Emmeline Pankhurst’s birthday. Why not pick a suffragette? Was her struggle, and those of the 50% of the population she fought alongside and for, any less significant than that of Nelson at Trafalgar? The uncertainty of her birth date means we can choose, shall we synchronise with France or strike out on our own? Plus mid-July is a good bet for some half decent weather.
Armada Day, 18th August
“Michel Pez said the weather would be lovely, what an idiot!”
Why Trafalgar Day? Why not another battle? Most WWI and WWII events were over longer periods of time, or are rather more international in flavour, so why not pick a military event which really sums Britain up – the Spanish Armada whose defeat was a combination of British blood mindedness and the weather. Mostly the weather. 18th August is the New Calendar date of Elizabeth I’s “heart and stomach of a king” speech, which is one of the best in British history. The downside is it would be quite close to the existing August holiday.
Reform Act Day, 7th June
George Cruickshank’s depiction of the Peterloo Massacre, a significant event in the history of democracy in Britain (and a possible contender for a bank holiday in its own right).
We don’t really do revolution in Britain, do we? The one time we did, overthrowing Charles I and the ructions that lead to Cromwell taking over, it was reversed within a few decades. Britain has long been the country of incremental changes, so why not celebrate one of the most major incremental changes? The Reform Act 1832 wasn’t perfect, it left a lot of people still disenfranchised (women and poor people mostly), but it was a significant step away from the still borderline feudal world we lived in, towards a slightly more democratic future. We could celebrate the day by going to Old Sarum and pelting effigies of crooked politicians with eggs.
First Association Football International Day, 30th November
Scotland’s 1872 team, great moustaches.
If we want major events that happened in the last three months of the year, currently underserved by bank holidays, forget Guy Fawkes Day (might upset Catholics), Halloween (might upset non-pagans/people who hate costumes and having their houses egged), or my birthday (apparently I am not significant enough, humph). What we need is something which celebrates Britain’s biggest cultural contribution to the world. Which celebrates British innovation and ability to apply rules to anything, even something which essentially used to be an excuse for a fight. Which celebrates the way England and Scotland just love to get one over on each other. The first ever official football international match, a 0-0 draw between England and Scotland. Considering the game involved men with amazing names like Cuthbert Ottaway and Reginald de Courtenay Welch, it seems rude not to celebrate it. (Wales and Northern Ireland can have a day off on the day of the first Wales vs Northern Ireland match).
Any other similarly genius/insane suggestions?
March 03, 2011
I don’t normally blog about my personal life for the simple reason that my personal life is really rather dull. But at the moment it isn’t. It’s not extraordinary, but it’s not dull, and I think it needs to be told because what I’m currently doing could and should be done by others. Maybe even you.
This is the (sort of) diary of a (potential) bone marrow donor.
These are the people you need: http://www.anthonynolan.org/
2006, one afternoon
Campus universities are a great source of bodily fluids it would seem. No, get your mind out of the gutter; I am referring to substances like blood and marrow. At one stage during my time at the University of Warwick it was a weekly occurrence to see the blood donation lorry parked in the grounds waiting for passing students to drop in. A worthy cause, it almost seemed a shame that they would come on Tuesdays as many of the sports teams played on Wednesdays and I knew of more than one sporty student who wanted to donate but didn’t want to do so on a Tuesday – “I can’t be weak for the match!”. You would sometimes also see members of Warwick Pride protesting at the ban on blood donations by men who have had sex with men, often accompanied by a groups of lesbians who would go and give their blood, whilst commenting loudly that their male friends couldn’t. It was a good way to protest.
It wasn’t just the blood people who came to visit. Anthony Nolan would come too.
Anthony Nolan is a charity that supports research into leukaemia, and which runs a register for bone marrow donors. As with all such charities it relies on volunteers to join its register and be matched up with sufferers of leukaemia and other blood disease who are in need of a transplant. Interestingly, in light of what I observed about the blood donation truck at Warwick, Anthony Nolan allow gay men to join the register and donate with the same restrictions as heterosexuals. As one Anthony Nolan representative said “If they are practising safe sex with a trusted partner then we are more than happy to accept them.”
And so it was one afternoon that Anthony Nolan nurses took over a couple of rooms in the students’ union at Warwick.
Students make a great target market for such drives. One could flatter the altruistic nature of students by saying their increased social awareness and tendency towards idealism makes it likely that they’d sign up for this sort of thing, to positively intervene in the lives of others. One could also point out that they have a lot of free time and a tendency to be distracted by anything which looks vaguely interesting and unusual, like a queue with some nurses at the end of it. For me, it was a combination of the two.
There was a queue of people in the students’ union building. I was on a free afternoon (in the sense that I probably should have been in the library somewhere, reading something important and relevant and historical) and with mates. A queue leading to a room which wasn’t usually occupied was an invitation to go and join it. Is there any act more British than joining a queue just because it’s there? Who knows, I’m only half British so maybe I should have only half joined it.
It turned out to be a queue to sign up for the Anthony Nolan bone marrow register. At this point we could have wandered off again, in search of queues with less bloodletting at the end of them. But we didn’t. Call it that student conscience or whatever, but we decided a bit of queuing, form filling and blood sample giving was a good use of our time.
By this stage it was late in the afternoon, and the nurses were anxious that they would have to leave soon. One stuck her head out of the door to the room and announced to the queue that they were finishing soon, and that they would be prioritising certain groups of people.
Men and ethnic minorities.
She explained briefly that there weren’t enough of either on the register, and that they were wanted for this reason. From their website I later discovered the following:
It is a priority for us to recruit more male donors because men can generally provide greater volumes of blood stem cells than female donors. This helps faster engraftment and the reconstitution of the immune system post-transplant. If there is a choice of donor for a patient in most cases a male donor will be preferred.
Ethnic origin is important when matching donors and patients. The ‘markers’ that are tested when searching for a suitable stem cell donor are genetically inherited and often unique to a particular race. A patient in need of a transplant is more likely to discover a suitable donor amongst groups of people who share a similar genetic history to them. In practice this means that an African-Caribbean patient, for example, has the greatest opportunity of finding a donor within his or her own ethnic community. There are still too many patients in the UK from black and ethnic minority communities for whom we are unable to find a compatible donor.
The nurse looked up and down the queue. A queue made up entirely of white females. Resigned to the fact she couldn’t get any more of the rarer groups that day she indicated for the next girl to come into the room. Jokingly I turned to my mate and wondered if being Celtic (as in I have three Irish grandparents, not that I am a football team) was enough of an ethnic minority to make a difference. Probably not we concluded. There’s so many British people with an Irish grandparent that it must be pretty common. How else do you explain the 1994 Irish World Cup squad?
Ray Houghton scores for Ireland against Italy at 1994 World Cup. He was born in Scotland. Watch the glorious video here.
The rest of the process was speedy. In we trooped, one by one, to give a small sample of blood and fill in some forms to say we weren’t injecting heroin into our eyes and having unsafe sex with as many hookers as we could (even though the University of Warwick is located in Coventry, it’s hardly close to any particularly mean streets). And we left. It didn’t feel particularly significant. The whisperings about how they get marrow (“a HUGE needle”) didn’t really seem that pressing. The lady had said they weren’t really looking for white females and we were all white females. They wouldn’t need us, surely?