It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
Rest assured I won't be writing daily blogs, so if you struggle through this one you might get a day off. But this was a Big Day in that I got my donated stem cells. My faux-fear that something would go wrong wasn't realised. But it would have been an awkward moment for all concerned to be sitting here with a largely ablated bone marrow and nothing to fill the space. Definitely job for the consultant.
In the end the donor didn't get Covid on a weekend night out, and no one tripped on the way from the lab. I watched as the i.v. 'spike' perforated the bag of what looks like dirty platelets - no accidental punctures, spills or slapstick moments - although a script writer could have a field day with the bag slipping over the floor to be crushed by the departing food trolley and my life disappear in a sea of slowly congealing hospital gravy. All very professional. And in around 30 minutes it was all over. Thank you Mx Donor, we love you. Now, It would make uncomfortable reading to take the First Dates analogy a bit further because even if I had offered a welcome cocktail, it would have been laced with rohypnol and I would have effectively kidnapped and drugged my date, and refused to call a cab. That's not me. So, it'll have to be the MAFS analogy winning out here. But even that isn't quite correct. I'll try to explain. MAFS with a complex pre-nup and no guarantee of love everlasting. Anyhow, I had a lovely post-coital moment playing my new cells music from my favourite Carlos, Gil, Stevie and others whilst I was infused with more anti-rejection drugs. What next? It'll take a few days/weeks for the new cells to find my marrow and set up home. But they may not be totally alone, as some of my pesky mutated stem cells will still be hanging around. You're going to have to give me a break here, because my knowledge of haematological immunology stops at stem cells, B and T cells, and antibodies. In recent years, just like A levels, they've had to make it more complicated as everyone started understanding it. The chemo I got was basically sent in as ground attack to give my marrow a good bloody kicking. Entirely reasonable behaviour given that until the mutations occurred we were getting on just fine. Bastards. The chemo will have killed quite a lot I hope (and I hope it really hurt), but there's always collateral, like feeling a bit shit and losing your hair. The harder you go in, the more collateral, so there's a balance. But it's quite likely there's a few of them bastards hiding under cover of darkness. Cowardice frankly, but hey ho. The stem cells are in part a new marriage, but they come with their own set of conditions. Like a cuckoo, they're taking over someone else's nest. They're going to pull their weight, and start making new red and white cells in time, but they've had a busy few days. Just 3 days ago they were happy in their own nest until they were jabbed in the bum, sucked out, jiggled about in a clever spinning blood sorting machine (technical term), bagged, transported, chilled etc. They're checking the pad out, unpacking, resting, bit of marrow Feng shui...I just got here, what's the rush? Like the cuckoo, the new stem cells will help to give a heave-ho to the mutant bastards left behind. Let's hope they find them all. But for the time being (and weeks and months) there may well be two gangs fighting it out - this is called chimerism. We've made a good start, set up T&Cs, and it is a good day. But .... this is only one part of a very complex disease, and the unique set of mutations I carry mean no one can predict what I will do next. But if you know me, that won't come as a surprise.
16 Comments
Angela Huertas
10/7/2021 03:40:54 pm
Nick??
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Cheryl
10/7/2021 04:16:26 pm
Thinking of you and sending a big hug.
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Ed Juszczak
10/7/2021 04:25:19 pm
Hi Nick, I’m a bit blown away by your humour, strong spirit and bravery. Quite how you remain so lucid is amazing.
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Angela Huertas
10/7/2021 04:34:10 pm
Time to in your mind, close your eyes and open them in a few months when your hair is back, your new immune system is working, hb is high and your platelets have normalised. You are not above 65 so this is the likely outcome for a young 25y old super brave person like you. I’m thinking of you
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Sarah Voysey
10/7/2021 10:34:45 pm
Again I shouldn’t have laughed but I did. You do have a real skill at making what I assume is pretty horrific into an amusing story of battling cells. But then the cleverest comedians can do that can’t they...make you laugh then cry then laugh again. Another of your many skills. Big day yesterday, I’m glad it’s done for you (and no slapstick moments). Looking forward to reading the next chapter. Keep focused, keep positive (that will help your donor cells get rid of those pesky cowardly ones hiding in the dark). As they say in Cumbria (in which neither of us reside but hey ho!) Tek Care
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Ruurd
10/7/2021 10:54:10 pm
Sounds like a fairy tale Nick but it isn’t”t of course as the wolves are still in the woods…but happy to hear you received the good ones now from the donor (bless her or him!) my daughter of 18 just decided to sign up as a bone marrow donor maybe your story helped her do it.
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10/7/2021 11:59:27 pm
Just picturing those little stem stells in your bone marrow busily reorganising the position of the sofas and making sure the lightning is right 😘
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Janette Proud
10/8/2021 12:40:29 am
Your spirit is amazing . Love to you and your family ❤️
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Walter Mihatsch
10/8/2021 01:35:53 am
Dear Nick,
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Kit Yin Embleton
10/8/2021 01:40:57 am
So glad it all went well without any slapstick disasters Nick. Lao Tzu was right, of course - The journey of a thousand miles begins with one step. So now you're on your way. Blessings to you xx
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Elaine
10/8/2021 11:41:16 am
Thinking about you Nick and keeping everything crossed all continues to go smoothly
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Michelle
10/8/2021 03:52:01 am
Bet you felt quite emotional seeing that bag of goodness. Fingers crossed they do their job x
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Tomit
10/8/2021 07:18:46 am
Laurel and Hardy, Charlie Chaplin, The Young Ones, but most importantly Bottom....can all "do one" for the moment ;-)
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Leon
10/8/2021 01:54:26 pm
Welcome to the cuckoo. Hope it’s a violent little buggar and royally kicks mutant ass. Keep up the good and very brave fight my man. The hawks dads n lads, n Cleife clan, pass on their best 💪💪🤞🤞💪💪
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Barbara
10/9/2021 07:57:57 am
Dear Nick, sending you a lot of good vibes for all the luck in the world from the Netherlands!
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Nadja
10/12/2021 12:54:25 am
Dear Nick, you received your new stem cells right on my birthday- I hope it was a good day for you and that we can celebrate our birthdays together next year and in all the following years......
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