It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
End of last week and the weekend were largely un-eventful. White counts and platelets stayed down, neutrophil count 0.00 and spent most days lying around watching rubbish TV and snoozing. Somehow, I’ve been in this 4x5m room for 19 nights already. The room is in positive pressure so there’s a constant flow of filtered air into the room which then outflows via gaps around the door. Although the temperature is constant, there’s a continual slight draft, and it feels dry. You wake after a few hours of mouth breathing with cacky mouth and dry lips. Still taking daily showers with Octenisan; showers are deeply un-satisfying, slight draft from the airflow, not quite powerful enough, feel chilly when you get out. I’m not complaining, appreciate how lucky I am to get all this for free. The food is fine, but hard to eat when you never feel hungry, and when you ordered it 24 hours earlier – know I could eat more if I could choose my own food there and then. Force it down best I can, cocktail of tablets for desert; must be eating enough as weight is steady.
Woke up on Sunday morning to realise my hair had suddenly started falling out - bed looked like a dog had been sleeping in it. My jumper changed from cashmere to mohair. One of the nurses shaved it short for me – at that stage I was rocking the Ragnar Lothbrook look with my beard but then that last 1cm fell out, and my beard started disintegrating. Still got the eyebrows but think they’ll go next. Apparently getting your eyebrows plucked out and tattooed back in is all the rage. I think Ragnar does that in series 3. I also realise the last time I had no hair and a naïve immune system was as a newborn baby. It goes without saying that I was beautiful, and back then my immune system was fully supported by breastmilk. Sadly, I now look like an grossly oversize 25 weeker yet I’m no more likely to get breastmilk than I am to get a bed-bath. Have been Octenisan washing, gargling with stuff that tastes like sea water and thought I’d kept it all pretty clean. But Monday I didn’t feel right. Temperature went to 37.6 and I got a sore spot in groin which developed into a shallow ulcer. You don't get 'pus' when you don't have neutrophils. Later on Monday, my temperature hit 38.9, CRP went up to 40, then 59 and I started feeling shivery. Peripheral and Hickman line blood cultures etc. then started back on Antibiotics (Tazocin plus shot of Gent) which is i.v. infusion every 6 hours so they finish at 1am and start again at 6 am. I’ve never had more than 4-5 hours of sleep at a stretch since I arrived. I feel a bit better today, but good news is I HAVE A NEUTROPHIL. You should normally have a neutrophil count of about 3.0 or more, but it could be OK to be a bit lower. Yesterday mine was 0.06 and they have to have come from the donor stem cells. My platelets are also holding up (44) some of which will also be donor. Today my neutrophils are 0.09. Slow but ‘convincing’ I am told. So, thank you Mx Donor; it does feel good. Long, long, way to go and many other future issues to contend with, but for now I’m grateful to get through these first steps. Thank you to all of you for commenting either via social media, on the blog or directly. I’ve been genuinely touched by how many people have contacted or messaged me and apologies if I didn’t respond. I was trying to be consistent and not comment or ‘like’ on social media but I may not always have been consistent! Thank you for all your offers of support. I’ve currently declined all the offers of travel, and most gifts of >£1,000, but I have accepted delivery of this boat. Designed by Stinky Jim Dad Bad Donkey (long story), who also designed the tugs that finally shifted the Ever Given in the Suez. True story. That’s all folks. x
16 Comments
Tomit
10/20/2021 09:25:37 am
Very pleased to hear about the neutrophils! 👍
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Helen
10/20/2021 09:37:29 am
Listen- I've had so many online appts with Dr Google about BMT, I think I qualify for a face to face appt.
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Lidia Giudici
10/20/2021 10:00:36 am
Nice to know that neutrophils are coming back!!!!!! Welcome, dear neutrophils!!!! Please, stay there!!!!
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10/20/2021 10:50:29 am
Great to hear the cavalry are coming!
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Sarah Voysey
10/20/2021 10:52:02 am
Great news about the neutrophils (not sure what they are to be honest so may spend a little time with google later to keep up). 19 nights!! I think we may have to make you a medal. I wonder how long you are likely to be in for? We think of you so often and feel a bit helpless to be honest and so it’s lovely to read the updates and feel more connected. Keep up the blog, keep up the spirits, don’t get eye brow tattoos ;-) much love
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Michelle
10/20/2021 12:11:15 pm
Great news on the neutrophil front... May they continue to build up and kick ass!feel for you in that room...can’t stand breezes or drafts 🥶
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Natalie
10/20/2021 02:31:47 pm
You know where to go if you did need some donor milk for the gut issues, but hopefully they aren't that bad! Good news for those first few happy neutrophils, hope they fully kick in soon.
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Ems
10/21/2021 12:24:04 pm
We’re cheering from Edinburgh for you and your new neutrophils!
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Angela huertas
10/22/2021 11:40:18 am
Good to know about your friend neutrophil and platelets. Hard to imagine that one would miss the pus on a wound. Hope it’s getting better.
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Colin Morley
10/22/2021 02:02:05 pm
Hi Nick, I have only just seen this care of Keith Barrington's blog. I am sorry you have been so ill and through all that heavy duty treatment. Modern medicine is fantastic and I am sure those clever docs will sort you out, after they have put you through the mincer!
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Sri
10/23/2021 02:15:12 am
Yeah Nick
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Ruurd
10/23/2021 04:44:59 am
You start to appreciate them when you miss them those neutro’s! So happy for you they are starting to come back those brave soldiers! Do a good fight for Nick and keep him safe!
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Leon Cleife
10/24/2021 08:18:27 am
I now have a horrible image of you breastfeeding, Nick.
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Riaan
10/25/2021 03:19:05 pm
Wow Nick, what a story !
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11/6/2023 02:48:52 am
This article on neutrophils is an enlightening dive into the world of these vital immune cells. The comprehensive explanations and their essential role in our body's defense mechanisms are truly fascinating. Thank you for shedding light on this crucial aspect of our immune system!
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12/5/2023 05:35:10 am
https://turkeyhealth.net
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