In Jewish tradition, Friday night is the beginning of Shabbat (the Sabbath), and cause for a weekly celebration which of course involves food… If you know anything about Judaism, you’ll know that everything involves food!
I’m not at all religious so having a Jewish Friday night dinner is quite exceptional for me. And last Friday was definitely exceptional. I was invited to join around 150 young Jewish people for dinner at a synagogue hall in Nottingham.
Why would I do such a thing? Did I mention the food? 🙂
But seriously… Since I’m recuperating well at six months post-transplant, I thought it was time to get out there and do my bit, engage with the world and make a difference. And what better way than encouraging people to register as a stem cell donor?
The average white British person has a 90% chance of being matched with a donor on the bone marrow register, strangely enough often from Germany… that’ll be the Anglo-Saxon heritage, I guess. If you’re from any minority ethnic group, such as being Jewish or Indian, the odds go down to only 40%. This means that I had a 60% chance of not finding a match… and maybe of not being alive today. This means that I was VERY lucky to find a match for my stem cell transplant.
When it was actually happening it didn’t feel especially dramatic… my brother wasn’t a match, but they found one on the register. And that was that… job done!
It sounds quite simple, but when I think about it, it’s mind-blowing. Finding an unrelated donor can take months; a single match can require going through many, many records. At the time, I wasn’t aware of how difficult it might be, I wasn’t involved in the search and I didn’t have months of waiting. They actually found my match by chance when checking for someone else, so I don’t think they even had to search. When I was told they’d found a match, I just accepted it gladly, but without much consideration.
Now, when I think about what she did, I’m amazed at the generosity and courage of my donor, who was only 19. It’s a big thing to do, I don’t have any doubts about that. Who would put themselves through injections, blood tests, cannulisations and hours in a hospital clinic, plus days recovering, for no personal benefit, other than the feel-good factor? I don’t know if I would…
The chances are that my donor is Jewish. This is based on the fact that the best matches are with people from a similar ethnic background. It makes sense, doesn’t it? Along with the majority of Jews in the UK, my family originates from a fairly small gene pool, from Eastern Europe. Basic high school biology tells us it’s more likely to find a good tissue match within a related genetic group. Anyway it makes me happy to think that she’s Jewish… But only 2% of stem cell donors on the register are Jewish!
So, to increase the chances for someone else to find a donor, I have determined to increase the number of registered potential stem cell donors and in particular, Jewish and other ethnic minority donors. The trick is finding a way to approach and recruit a large number of people in one go.
Nottingham is by no means the centre of Jewish cultural, religious or social life. However, a Jewish friend put me in touch with Brocha Lent, one half of the dynamic couple who run Nottingham Chabad (a Jewish religious and cultural organisation for students).
It turns out that Chabad and the JSoc (University Jewish Society) are both very active in Nottingham, which draws a large number of Jewish students to the two universities here.
Brocha was very enthusiastic and supportive of my idea and suggested the best way for me to attract a large number of Jewish students would be if I came along to speak at a Friday night dinner. Normally, they put on dinner for 70-100 students, but the BIG Shabbat last Friday was organised in collaboration with the JSoc, and they expected up to 200 students, so she was very keen for me to come along that day, rather than waiting until the new year. With just one week’s notice, I agreed.
As you might imagine, I spent much of Friday feeling nervous, but as I’ve delivered training and spoken in front of groups before, I knew I’d be okay. I just had to trust myself. Of course I know my story intimately and I had some simple facts and figures, as mentioned above, to support my cause. I was also reassured by friends telling me I’d do a great job and a local Jewish friend who came along to offer her support. Thanks Alona!
Both Brocha and Daniella, the President of the JSoc, made me very welcome and while everyone was supping on Jewish chicken soup, Daniella introduced me as a special guest.
I got up on the little stage and looked out into a large hall full of tables of food, surrounded by around 150 beautiful and vibrant young Jewish faces. A rare sight in Nottingham! I surprised myself by feeling quite emotional.
I spoke about my experience of being diagnosed, treated and living with myeloma, including the auto transplant last year, the relapse and of course, having a donor stem cell transplant in May this year. I encouraged them to consider registering as potential stem cell donors and reassured them that all they have to do is to spit into a tube – no needles at this point! I said that I would be arranging a recruitment event in the new year, to which I hoped they would come along and bring their friends – they don’t have to be Jewish.
It went really well, I didn’t falter, I spoke clearly (I think), I didn’t dwell on the tough stuff, nor let it become a sob story. Well, it isn’t! I had really good attention and a lovely round of applause afterwards. I invited anyone to come and speak to me afterwards if they wished and a few people came up to ask questions or just to thank me and wish me well. Now all I had to do was organise a recruitment event for the new year.
Well, that was the plan… But on Monday I received an email from Jenner, the Anthony Nolan Donor Recruitment Manager for the Midlands. I’ve been liaising with her since we met at a recent recruitment event at Nottingham Forest Football Club. She told me that a recruitment event has been organised at the University Medical School next Tuesday, 11 December, by Nottingham Marrow. Marrow is a voluntary organisation of medical students who raise money and put on donor recruitment events for the Anthony Nolan Trust. She thought this would be ideal, coming so soon after my talk… Strike while the iron’s hot!
So I’ve been busy getting the details out to all my new-found Jewish contacts to ensure we get loads of registrations. I’m heartened to see that several Jewish people have already said they’re going. The miracle of Facebook!
If anyone reading this is interested in participating, please do come along. You don’t have to be a student, or Jewish, just aged 16-30 and in good health. If you’re from a minority ethnic background, you can register up to age 40, so there’s a place for more mature donors. Who knows, maybe we can get some lecturers too?!
As an aside, I have a friend with myeloma who isn’t Jewish, but has an unusual genetic mix and so far has not found a suitable donor. For the time being she is in remission but her consultant has recommended an allo transplant, which isn’t possible without a match. I would be so chuffed if through my efforts a match could be found for her.
Don’t worry about missing out… I’ll pop in an update on how it goes on Tuesday.