Perspective: A Donor’s Journey, Part 1

It’s about time, beyond time, that I actually made good on my ‘I’m going to write a blog’ statement. After a few half-hearted attempts at getting into the swing of blogging, I’ve finally been sparked to write about something. 

I’ve never been particularly good at sharing my negative feelings, or so say the twenty-three blog posts sitting in ‘draft’ that will likely never see the light of day, so I wanted to check in at my thus-far-almost-entirely-abandoned blog with something that, ultimately, I hope proves to be uplifting, something that I could use to perhaps prompt others to do what I did and sign up to the DKMS donor register…so here we are, and here I go:

There are moments your perspective shifts.

Let me take you back: there was a little local boy in need of a transplant – bone marrow or stem cells, I can’t recall which – and there was a drive to encourage as many people to register as donors with DKMS as possible. I registered, in the vain hope I would be a match and could help that little boy, give him a second chance; I wasn’t a match, and I couldn’t help.

I stayed on the register but never thought on it again. It’s not something you think of in your everyday life: ‘I wonder if today will be the day I get asked to donate my stem cells?’ is not a question that habitually runs through your mind, or at least it doesn’t through mine. More likely it’s questions like ‘What should I have for dinner?’ or ‘Why won’t this ache/this pain/this bug go away?’ or ‘Do I really have to work today?’ or ‘Why can’t I be slimmer/curvier/less spotty/less anxious/more confident?’ and so on, and so forth.

Normal questions, normal thoughts, normal worries. Nothing to be alarmed about, nothing that causes you to stop and take stock. The everyday worries so easily suck you in, and you find a choice between two meals or two outfits or two books becomes a drama, a huge decision that rocks your day, simply because you feel, for reasons best known to your subconscious, that you should be worrying about something.

Perspective is a funny thing.

As someone who deals on an almost daily basis with pain, following a pedestrian versus car run-in 18 months ago, I’ve found my perspective has been warped and shifted more times than I care to count in recent months. Some days, the smallest things will rile me up into a state of near-hysteria; other days, I’ll take a more nonchalant approach, with a ‘whatever happens, happens’ type mantra. There’s been no equilibrium for a while, and I’ve spent many a sleepless night fretting over things that, frankly, should not be taking up as much headspace as I’m affording them, allowing worries of all shapes and sizes to drag me down simply because it was easier than fighting back.

Now, I find myself reconsidering my outlook.

A few weeks back, I took a phone call from DKMS telling me that I was a possible match for someone in need of a stem cell transplant in order to survive.

This isn’t a ‘please, I need a break, or else my hip is going to hurt all day’ scenario; this is a ‘please, I need a stem cell transplant, or else I’m probably going to die’ scenario, and that is a very different beast.

So I went  – who wouldn’t? – to the confirmatory blood test and I filled out a fairly lengthy questionnaire and I didn’t hear anything else at first. My donor journey was over, I thought –  there had been several possible matches lined up so I hoped and prayed that one of them had been deemed suitable where I clearly wasn’t. As it turns out, that ‘one of them’ was me.

The phone call I received on Monday 24th April 2018 isn’t one I will forget in a hurry, possibly ever.

Call me dramatic, but it had a profound effect on me, hearing the words ‘You are a match and we want to proceed with you as the donor.’

Honestly, once I’d asked my questions and we’d set the various dates required for the process to take place, I felt really rather emotional…not through any sense of righteous heroism – after all, who in their right mind would register and then refuse to donate without a bloody good medical reason? ‘Being nervous’ doesn’t cut the mustard for me as an excuse when someone’s life may hang in the balance.

No, what got me emotional was how selfish I suddenly felt. Whilst I’d been sat on my phone complaining to my friends about rib pain or a cough or the traffic or someone rubbing me up the wrong way, someone, somewhere, was sat simultaneously wondering if they’ll see another Christmas, perhaps wondering whether they’d see their child’s first birthday or make it to their own wedding day, perhaps wondering if they’d ever be able to return to work, but almost certainly wondering how long they have left, wondering if their ‘match’ was out there, if they’d be found…

Doesn’t that just put the everyday things in perspective?

This week’s medical assessment had a similar effect. A trip to London for more blood tests, another questionnaire, a chat with a doctor and a nurse, a urine sample, an ECG, a chest x-ray, a blood pressure test, a height and weight measurement and a walk-through of what happens next…

Whilst I will be having four days of injections of a substance called G-CSF, which will encourage the growth of white blood cells in my bloodstream, in the run-up to the donation, the patient on the other side of the coin will be undergoing a high-intensity course of chemotherapy to strip away their immune system, leaving them ready to receive my healthy cells but also leaving them entirely vulnerable. If I was to pull out, in those final days, the odds are high that they would die. That, obviously, is not an option featuring anywhere on my radar.

Every time I read the letter, see the dates, I wonder when the patient themselves will be told there’s a match. After my medical assessment has hopefully confirmed I’m fully suitable as a donor, I suppose, to avoid getting their hopes up only to dash them if something crops up that renders me unsuitable.

Providing there are no problems – I have one more test to clear – then the donation will happen in just under two weeks. It will take four to six hours on day one, with a possible further few hours on day two if they can’t harvest enough cells in the first session. The blood will be taken out of one arm, the necessary cells will be harvested and then the blood will be returned through my other arm and I’ll be in and out just like that; if the veins in my arms are unsuitable on the day, they’ll go through a vein in my neck, which then requires an overnight stay in hospital. One night. Who knows how many nights the recipient has spent in hospital over the last weeks, or months, or years?

Perspective.

“You can bring your iPad or something, on the day of the donation” they said to me. “Or you can bring someone with you, if you’d like.”

No…

I think I’ll just sit, and count my lucky stars that I’m on the donor’s side of the register, with my fingers and toes crossed that maybe, just maybe, something as simple as my peripheral blood stem cell  donation (try saying that quickly!) could save someone’s life.

To find out more about DKMS and stem cell/bone marrow donation, visit their website and take a look around. And if you aren’t eligible to register to donate yourself, there are plenty of other ways you can help!