It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
I've thought about writing this post for 48 hrs now but somehow couldn't find the energy. But the Big News is that I did get home a couple of days ago after 27 nights. The staff on the ward have been amazing. Caring, efficient, professional; most importantly I really trusted them. Before I went in, I imagined week 1 would be horrific with chemo, week 2 would be anxious and exhausted, week 3 I'd be on the exercise bike, and by week 4 I'd be exercising, answering emails, catching up with zooms. Whereas, even now, I get tired just eating or simply brushing my teeth. Getting home means better sleep, choice of foods. The smell of most foods (even ones I could eat) makes me nauseous and many still taste weird. Fruit juice and ice gets me through the day. I was gutted to find out that Orangina actually has small amounts of grapefruit in it (forbidden if you are on cyclosporin!).
Fortunately, I live close to the hospital, so getting back to clinic yesterday was simple. I have to go twice weekly for bloods, check my Hickman line etc. I still sit in the clinic waiting area trying to work out by looking what other conditions people have. Completely pointless really, as there are no tell tale signs of most haematological disease except extreme pallor and those of us with no hair. Getting to this stage is a good start - I'm now entering the "100 days". At that stage I get another bone marrow biopsy where they look to see the number/proportion of any residual mutated stem cells. Hopefully, the chemo and the cuckoo will have done their job, but it is still possible to have some residual cells at that stage and still get through. But it is the thing I most worry about. Having two cell "lines" is called chimerism - I'll talk more about this another time. And I still need to share my frankly ridiculous behaviour on the horrific 'diagnosis day', telling the kids and 'being brave'. But for now, that's all folks. Oh, btw neutrophils are 1.22, and my platelets are the highest they've been in 2021. Not bad ...
51 Comments
Sarah V
10/30/2021 01:58:53 pm
So much good news in this post! We think of you everyday x
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Osman
10/30/2021 02:21:28 pm
Good News Nick!
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Pam cairns
10/30/2021 02:20:17 pm
Fantastic news Nick! Now time to chill out .. do jigsaws.. drive your family crazy..
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Janette
10/30/2021 02:21:51 pm
I hope you have a bell to summon room service at home .They will be so happy to have you home. Amazing news .
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Ana
10/30/2021 02:26:48 pm
Nice to know you are back home. Praying for your full recovery!
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Lidia Giudici
10/30/2021 02:42:47 pm
Such good news!!!! I hope neutrophils continue "behaving properly" and those ugly, pirate cells don't even think about coming back!!!
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Ruurd
10/30/2021 11:51:59 pm
So happy to hear you got home and numbers look promising!
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Lou Wilson
10/31/2021 01:35:09 am
We are your personal Deliveroo (DeliverLou even) for testing of food preferences. Thanks for the blog - learning so much, sending all the good vibes your way.
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Alex Mancini
10/31/2021 01:37:35 am
Such fantastic news Nick, home is where the heart and strength is. Trying small amounts of different foods will be fun! Sending much love x
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Paul
10/31/2021 04:17:26 am
Amazing news. Have a wonderful time back with your family….they must be thrilled to have you. Enjoy all the home comforts.
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Jonathan Wyllie
10/31/2021 07:31:47 am
Take care and get all the positive vibes possible from those results! So glad you got to get home.
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Michelle
10/31/2021 04:43:19 pm
Such good news on all sides. Hope you continue to do well at home, after all ‘there’s no place like home’.
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Claire Wood
11/1/2021 10:24:33 am
Fingers crossed those determined neutrophils keep creeping up and you can stay at home.
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Niina K
11/1/2021 12:14:47 pm
So chuffed to read this Nick. No place like home. Enjoy the rest and comforts, and keep up your spirits. 💛
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angela huertas-ceballos
11/3/2021 01:39:02 am
Dear Nick
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Sam J
11/5/2021 08:46:14 am
This sounds like great news, Nick. I’m so glad to hear you are home. Have been thinking of you often. Very best wishes to you and your family. Stay strong x
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Dawn Scott
11/12/2021 02:31:25 am
Hi Nick, we think about you every day. Looking forward to seeing you running passed our house in full flight. Obviously not just now but in the future. Sending our love down the street. Love from John and Dan and Betty too. Xx
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Caroline
11/13/2021 06:19:17 am
Hi Nick, probably lots of us reading your posts , both laughing out loud, and still in shock at what you are going through. It really is an eye opener, thanks for letting us know your progress. Hope you're having lots of rest and nice food at home xx
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Hopefully the chemo and the cuckoo will have done their job, but it is still possible to have some residual cells at that stage and still get through. I truly appreciate your great post!
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