It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
As always, start at the first blog if you've not read before. I'm getting admitted tomorrow, and have to phone in the morning to check there's an empty bed. Getting my bags packed. SP50 suncream, passports, driving licence, evening wear, clean underpants plus the typical things every immunocompromised and mucositic patient needs - fizzy water, baby toothbrush, non-NHS pillow, pineapple juice (apparently), rice pudding (Y not), DVD boxsets, extension leads, ear plugs, disco lights (obvs), piano, Beethoven sonatas. Definitely going to get stop and searched. I think they start the chemo straight away. I'm told the house special is very good. As part of the workup I had to give various samples. Why is it embarrassing to collect some of them? When I was first diagnosed I was given a small bowl to 'catch' a urine sample, and told where the toilet was. In the toilet there seemed no place to balance the bowl with urine, so somehow I had to PU, collect, stop, put bowl on floor, finish PU. Then I had to walk back to my room past all the other patients staring at me and staff casually smiling "yes, that's a steaming bowl of my urine" and making sure not to spill it. Last week, I was given a very useful yellow funnel device, but it still left me wondering how women give a urine sample without peeing all over their hands. Ladies, how the actual? I also had to bring a stool sample. Walking down the corridor of a hospital with a bottle of your own blood seems OK. Sort of proud "yeah, that's my blood, pretty red and I didn't even cry", but urine is a little step up, especially when you hand it over and it's still warm. But stool. Yuck. It's just come out of your bum, and everyone will know that; somehow you have to negotiate the safest strategy to get it from bottom to pot. Mine involved layering toilet paper all over the bathroom floor and then crouching. Hickman line is doing fine; not being able to sleep on my tummy is a pain, stitches still feel a little sore, but OK. Got a bruise, to be expected when you skewer through skin and you only have 50 platelets. You then end up with two dangly ends. You can put these in a small bag. They didn't have any bags with sparkles so I went for leopard skin. (£1.50 each, I paid myself) Looking at my body now, I realise how much has changed, but this little beauty of a Hickman line is going to be a lifeline over next few weeks. That's it for today. Bit boring wasn't it.
Listen, I've no idea how many of you, if any bother reading this. It doesn't matter, there's no counter or tracker so I've literally no idea. I've been really touched by all the comments on my social media pages, texts, emails etc. I haven't responded yet, but I will do. It means a lot to know I connected with so many people over the years.
39 Comments
Jenna
9/30/2021 11:55:18 am
Will be thinking of you. Only you could make me laugh about shitting in a pot. The answer to your wee question Nick is skill 😁
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Kelly
9/30/2021 12:03:21 pm
I'm following nick there's a lot of us with you! If your blog helps you keep writing, but maybe less shit and piss in them 🤣🤣🤣🤣
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Habiba
9/30/2021 12:15:27 pm
It’s not elegant catching urine as a lass either! Hope it all goes well. Xx
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Jobbers
9/30/2021 12:17:10 pm
We just piss on our hands prof, simple as 🤣 I’ll be thinking of you! Glad you’ve got some new slippers for the occasion xxx
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Claire
9/30/2021 12:19:44 pm
You have such a way with words. Eloquently talking about shit. Thinking of you tomorrow x
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I remember a friend telling me about a self-awarness exercise he'd been given in an ashram in India many years ago, he had to shit in a bottle in order to know exactly where his arsehole was. I thought about this a few times in later years, most especially in my years as a potter, stuck firing a kiln through the night, needing to go and with only a milk carton for company. Perhaps it's a story I should have shared before now. You could have been practising.
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Helen
9/30/2021 12:24:43 pm
Where's your fashion sense man, you need a rainbow bag 🙄
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Nadia
9/30/2021 12:26:58 pm
Love this! Not sure I’m supposed to though. What’s the tape measure for?
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Konstantinos Gerasimidis
9/30/2021 12:35:27 pm
Nick you rock. I loved the story about the stool collection....! Make sure you get with you a few recordings of Roberto Bolle performance!!
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Sara
9/30/2021 12:38:25 pm
Great & honest writing….we’re following & sending positive vibes. Thinking of you x
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Paula
9/30/2021 12:54:44 pm
Nick, I guess there’s something to be said about how shitty life can be. Your blogs are definitely not boring, it’s a really good way to keep us posted on your progress. Sending lots of positive vibes Px
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Vanessa
9/30/2021 12:56:07 pm
I think there’s a lot of us following this blog. You are bloody amazing! Will be thinking of you tomorrow Nick. The answer to how ladies can manage a urine sample is ‘very carefully’! I highly approve of your Roger’s Profanosaurus and your taste in tequila. Although I doubt pineapple juice is as good a chaser as salt and lime! Big hugs my friend ♥️
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Pam
9/30/2021 12:57:06 pm
Impressive - both the sample collections and the kit! Do you really need a nutrition book?? Will they let you sneak in the bottle collection? Thinking of you tomorrow x
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Kayleigh
9/30/2021 01:00:46 pm
Try giving a urine sample while heavily pregnant… now THAT takes skill!
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Janette Proud
9/30/2021 01:27:49 pm
Of course people want to follow your story .Do you even know how much you are loved.
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Sarah V
9/30/2021 01:38:20 pm
Hilarious as always in a ‘I really shouldn’t laugh at this’ way. Weeing in a bottle is easy after considering the gymnastics menstruation equipment and child birth require. Shitting on floor very bad...I once had to shit in front of a room full of people whilst being x rayed. Joy of Crohn’s disease investigations. I was traumatised but no where near as much as the group of students watching. I’m assuming no one was watching you so your dignity remains almost intact. Good luck tomorrow
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Ruurd
9/30/2021 02:08:52 pm
Will think of you tomorrow NIck! Hope there ai a bed available and we all wish you get through this well! Following your blog with interest: being on the other side is weird but good to realize! Keep smiling about the small nice things! Take care!!
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Alan Boddy
9/30/2021 02:09:59 pm
Good luck Nick. Very inspirational and brave writing.
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Liz McCay
9/30/2021 02:33:59 pm
I'm reading everything & behind you all the way!! Go Nick! You really make me laugh with your honesty & you're upbeat humour! Stay strong 💪🏻 you've touched so many lives! 🤩
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Kristina
9/30/2021 02:45:24 pm
I will be thinking of you so much, Nick. Thanks for letting us be with you through this blog.
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Kristina
9/30/2021 03:28:19 pm
Good luck Prof. Loving the leopard print, suits you 😁
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Marieke
9/30/2021 04:52:56 pm
At least you succeeded, they gave up trying to get sequential X-rays while I was supposed to wee in a pot. Found I need privacy. Worse than student nurse prematurely removing urine catheter that had to be reinserted. I have the glitters sorted for you 😉
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Iain
9/30/2021 05:05:28 pm
Thinking of you Nick. Looking forward to hearing some positive news ahead.
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Come on, admit it...you fashioned that Hickman line bag from an old posing pouch didn’t you?! 🙈
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Stefan
9/30/2021 10:22:08 pm
Hi there from Stockholm! Glad to see you also watch DVDs but hope you get WiFi access to the big Internetz too. And whiskey but no beer?! Let us know when you need new supply :) Best greetings!
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Helen
10/1/2021 12:13:46 am
Positive thoughts and huge respect for your Donor, who will be getting ready to change your life.
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Toni
10/1/2021 12:43:10 am
Sending lots of love Nick. I'm sure those abs will come back with a little bit of work. 😄 xxx
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Caroline
10/1/2021 01:48:52 am
Right with you Nick - reading every word and walking right along beside you (even if from afar down under). Be strong mate 😘
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Mary
10/1/2021 02:18:49 am
Your sample collection saga reminded me
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Kit Yin Embleton
10/1/2021 02:38:30 am
Your blog definitely not boring, We're here to cheer you on, Nick. Good vibes to you and hope to see you soon. Love from us all xx
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Jill Williamson
10/1/2021 04:12:26 am
Stay strong Nick. Thinking of you. Keeping blogging it wasn't boring. Best wishes
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Ann
10/1/2021 01:58:50 pm
Hi Nick as someone who has travelled a blood cancer path in the not too distant past can I just say your blog is uplifting, funny and so informative!! I am sending you prayers and very best wishes for a successful transplant and long good health afterwards xx
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Andrea Storey
10/1/2021 10:39:32 pm
Hi Nick, I had the pleasure of attending a neonatal conference a few years ago where you were one of the eminent speakers. I learned a lot from you that day. I sincerely hope you are doing well and that your future is bright. Neonatology needs you!
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Amy
10/2/2021 04:58:02 am
You wish that first body in the photo was yours. Maybe it will be when you make it through this mess. You’ve never been boring, certainly not now. Lots of love and well wishes!
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Sri
10/3/2021 07:45:27 am
Dear Nick
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Alex
10/4/2021 01:17:40 pm
This made me laugh out loud….. all your ‘essentials’ laid out reminded me of doing exactly the same before I climbed Mt Kilimanjaro a few years ago…… only difference was my favourite high heels & fairy lights. I imagine at times it might feel like you’re climbing a bloody mountain, but there are a lot of us right behind you, pushing xx
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Sarah Edney
10/4/2021 01:23:10 pm
Yep, we ladies wee on our hands. A few years back someone came up with a home pregnancy test specifically designed to avoid you weeing on hands. Not sure there's much point there, given many positive tests result in months of increasingly impossible urine samples and years of being peed on, catching vomit etc. Hey ho. I hope you're as okay as you can be. My brother is also living with cancer and I know there's nothing new or insightful I can add here but I really, really hope you get better soon.
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Orla
10/4/2021 03:37:33 pm
You have people from all corners of the globe supporting you and wishing you the very best, a reflection of the incredible work you have achieved and how much you are admired, respected and loved.
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Angela Huertas
10/7/2021 04:05:43 pm
Well Nick, what a muscular body! Sure it’s yours?? Thank you for sharing your experience and emotions. Who knows? One could be the next one writing a blog and benefitting from what you generously share. I feel like I’m there with you, such good description of it all and with photos and everything. Puzzled by the items you packed. Tape measure?
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