Tuesday, 7 July 2015

On being a stem cell donor

I'll try and explain succinctly, but I have been oddly reluctant to post this, but here it is - it's now or never: I'm going to be a stem cell donor.

Not just sign up on the register. Actually do it. I'm a match - for a person - someone in the States as it happens - who needs stem cells. Incredible. I'm a 1 in 33,000 chance for someone. Another human. Incredible that after everything we went through with Blue (who didn't need stem cells, but I can tell you I would have sold my body to the highest bidder to get them should he have done so), that I can do this. Incredible that medicine has advanced so much that this is possible, that I can help someone like this.

Of course it's not at all about me. Sure, I feel elated, emotional and just a little bit proud that it's me, but this is really all about the many people (and their families) struggling with vile, insidious diseases, desperate for a glimmer of hope. After everything that happened with my boy, even though he didn't need a transplant of stem cells, bone marrow or otherwise, I think I am qualified to say that I know a little bit what this person and his or her family are going through. Not perhaps the specifics, but I have been in the situation where you know you would do absolutely anything, give anything, to make the person you love better, and have felt the desperation that comes with being essentially powerless, unable to do anything except rage and pray and hope that it will all come good. So yes, jolly good of me for putting my name forward, and for going ahead, yes, well done. But the reason I'm writing this is because if it means one more person signs up to the British Bone Marrow Registry as a result, that's potentially another family who will have that hope.

And of course, it's also about that one person who I match - who may still not be well enough, in the end, to go through with the transplant. But it's getting closer, and I'm hopeful that the chance can be seized, that the donation and subsequent transplant can go ahead, that there's a future for this person.

I live my life based on the fact that if I worry about something enough, it just won't happen. It doesn't always work in reverse - I've never, ever worried about winning the lottery, and, you guessed it - no jackpot rollover for me (although the fact that I never buy a ticket might have something to do with that). But the Husband has never been killed in a terrible motorway pile up, for example. I have never been raped and murdered in my bed. I have never, EVER been attacked by the monster of unspecified nature that lives in the wardrobe (although I am careful to always close the wardrobe door before I go to bed...)

On the flip side, donating my stem cells? Never gave it a moment's thought. As I've said before, I'm relatively embarrassed that I didn't make more of an effort to give blood before Blue was diagnosed with leukaemia 9 years ago. Once I was able to donate, after Pink was born, I have donated whenever I can. During one of those donations, I must have signed up to the bone marrow registry, but it's never been something I've thought much about. All the publicity makes it clear that they really, REALLY need donors from other ethnic backgrounds to my bog standard White British, and really, it never crossed my mind that I might actually be called upon. But called upon I have been, and given that I have a voice, albeit quiet a small, quiet one, I thought I'd use it to try and spread the word a bit. 

So what's happened? Well since the initial "You're a possible match" contact, over the last 8 weeks, I have had a whole series of blood tests from the initial tests that confirmed I was the best match for this patient, through to tests and a medical to making sure I am fit and healthy enough to donate (I am - whoop! - I was even described as YOUNG and healthy. How good was that?!), and more blood tests - a whole 15 vials which made the nurse at the doctors' surgery here in Cardigan blanch slightly first thing on a Monday morning a couple of weeks ago, to be sent off in 3 different courier kits... 

And now I am waiting. The final arrangements in place, and assuming the patient has started his or her 'conditioning therapy' to prepare to receive the stem cells, I will be visited by a nurse starting on Thursday for a series of daily injections to persuade my stem cells to poke their little powerhouses from above the parapet of my hip bone and start circulating round my blood stream.  Then on Sunday I head to Bristol for an 8.15 am appointment on Monday morning where I will be hooked up to a machine for the donation process. My blood will be taken from my left arm, fed into a machine which separates off the stem cells and then returned to my right arm. I've been told it will take around 4-5 hours - so I've got my kindle loaded up... And my stem cells, well they'll be loaded up and packed off with a courier on a plane to somewhere in the USA. That's all I know - and all I will know for a couple of years at least. But I'm really hopeful that in a couple of years time, I'll find out that it worked. That someone got to live because I'd signed up to the Bone Marrow Register.

I've been brilliantly supported by the lovely ladies and the Bone Marrow Registry in Bristol - who have answered all my questions, sorted me out train tickets and made sure everything runs smoothly. if you're worried about how this might impact on your financially, the procedure is fully expensed, even including expenses for a partner who has to accompany you, and - in my case, when I went for my medical, a day of 'dogsitting' for Fred the dog. 

So what more can I say? Don't leave a comment saying 'wow how brilliant', or 'good for you' - leave a comment telling me you've signed up - and I know not everyone can donate blood, but if you can, please do. Please make room in your life once every 3 months to donate a pint; and sign up to the bone marrow registry. You may never be called. But you just might. You just might be able to save someone else's life, to give another family some hope - and all for just a little inconvenience in your own life.

You can find out more about the British Bone Marrow Registry here. If you register you become part of an international community of possible donors - my stem cells will be going to the States, which is unusual but as there was presumably no one on the US registers, the search was widened internationally, which is reassuring because if you or one of your family needed a transplant, there's a potentially wide pool available. 

So go on - if you can - and do it. Sign up and tell me you've done it. Make the pool even bigger. You never know who might need it.

Wednesday, 1 July 2015

Lemon Orange and Elderflower Marmalade

As I was saying the other day, (in a round about sort of way), it's the start of the season of fruitfulness, gooseberries in the garden, elderflowers sprinkling the hedgerows with their intoxicating scent, strawberries and redcurrants ripening.

I made elderflower cordial last week, and reluctant to chuck away the sliced lemons and oranges, cast about for a means to use them up - after all, it's not as if they'd been boiled for hours or anything, simply steeped in elderflower infused sugar syrup.

A friend had already offered Darina Allen's very sensible use for the lemon slices - freezing them and using in G&Ts, but I recalled a marmalade that I've made before, and wanted to recreate it.

This is a lovely, floral marmalade -  I really can't recommend it highly enough. If you've made elderflower cordial, it's pretty easy to make - and quite forgiving. Life kept intervening so it took me the best part of 3 days to get from infused slices to jars of marmalade, which finally materialised on Sunday morning.

If you haven't made elderflower cordial, you'll have to find a different recipe. Obvs.

Lemon Orange and Elderflower Marmalade

3 lemons and 3 oranges, thinly sliced, retrieved once you strained your elderflower cordial into bottles. You can bin the elderflowers though - they will have had it by now.

1kg (give or take) caster sugar
300ml elderflower cordial
4-5 sterilised jars

Put the sliced fruit into a pan, just cover with water and bring to the boil.

Simmer gently until the peel is really soft - it took about an hour but it could take up to 2.

Strain and reserve the liquid, and chop the fruit up as finely as you like, taking care to remove any pips as you go.

Weigh the fruit and then measure our double the amount of sugar. I had approximately 500g of fruit, so I used 1 kg of sugar.

Measure the reserved boiling liquid and add the 300ml of cordial. If necessary make the amount up to the equivalent liquid measure as the sugar using tap water - so for my 1 kg of sugar, I had 1 litre of liquid.

Put the chopped fruit, sugar and 1 litre of liquid into a suitable pan, bring to the boil and keep going till you reach setting point. 

How you test to confirm this I leave up to you - jam thermometers, cold plates. I suffer terribly from what I call 'setting point stress' and usually combine at least 2 methods. In this case, 105C on the jam thermometer and cold plate worked.

Decant your marmalade into jars, and Bob, as they say...