Are you bored yet?
My Allograft 2018/19 – 8. 30th January 2019
By Andy Burrows, 30 January 2019
Hoping you’re not bored already
There’s part of me that feels like writing these blog posts every day isn’t worth it. It must make fairly tedious reading. Daily life is really not that interesting.
I don’t know what you get out of reading the boring blow by blow account of my cancer battle. But I appreciate the encouragement that comes knowing that people care enough to read. And in return I try to share encouraging thoughts and reflections for you.
And when I summarise it, I guess what I have to share from the little box that is my hospital room is three things – what’s been happening, how I’ve been feeling, and what I’m thinking.
How I’ve been feeling
I’ll start with how I’ve been feeling, because you’ll be wondering whether today’s experience with Campath was better or worse than yesterday’s.
Given that today’s was double yesterday’s dose, there was a chance that this would counteract whatever benefit I got from my body building up tolerance.
However, I’m pleased to say that I didn’t feel as bad as yesterday. I felt like I had a mild flu – aching limbs, headache and cold hands, as well as a sniffy nose. It was bad enough to be given some paracetamol and pethidine on top of the piriton.
Campath is an antibody drug, much like Rituximab, so could technically be called immunotherapy. I’m having it because it depletes certain blood cells called T-cells, which are critical in the immune system. The reason they delete them is to reduce the likelihood and/or severity of Graft Vs Host Disease, which is where my immune system and that of my donor basically start fighting. This is one of the big risks in stem cell transplants.
What’s been happening
Treatmentwise, preceding the 10-hour infusion of Campath, I had a chemo drug called Fludarabine. This took 30 minutes to infuse, and was pretty much a non-event.
Fludarabine is a low-dose drug, and it’s supposed to condition my bone marrow to suppress blood cell production (healthy and cancerous). I presume this is to prepare my body such that the new stem cells from my donor will develop quicker into blood cells and overtake my own blood cells after the transplant.
While having Campath, because of the side-effects, the nurse recommended that I stay in my bed. So, I had to make sure that things I needed were close at hand…
… including the bottles that I have to pee into. All my pee has to be captured in big cardboard bottles. This is so that they can measure my fluid output and dip test for blood sugar levels.
The other side of the equation is my fluid input – I have to keep a record of everything I drink. The nurses add that to the infusions I get through my line. And they work out whether I’m carrying excess or insufficient fluid. They then compare this to my weight (they weigh me every day) and work out how much of my weight loss/gain is due to fluid retention, so that they can get a true picture of my weight.
This is important later on when I go off food, and I probably will lose weight. Having a correct picture (both of fluid retention and weight) helps them to know when they need to intervene in some way.
And by the way, because of something to do with risk to my veins, I have to wear anti-embolism stocking all day, every day – very attractive white things that people often wear on long haul flights.
What I’ve been doing
I spent quite a bit of the morning working on Supercharged Finance stuff. I guess, perhaps, I should have used the opportunity (being disconnected from the pump) to go on the exercise bike, but I was still feeling a little groggy from the Campath yesterday.
The drug treatments didn’t start until lunchtime, and once I was confined to bed my desire to work waned. I had a sleep (or two), started to watch the Grimm series on Netflix, and had a few conversations with family on text and facetime.
Heidi, Tom and Anna came to see me for the evening, and I spent most of that time blasting Zombie heads off on Call of Duty on the PS3 with the kids!
Anna brought me the first Harry Potter book to read, and left with strict instructions that I should read it! So, I dutifully read the first few chapters after they left!… and enjoyed it!
Perhaps I’ll get some ideas and start writing fiction, instead of writing about myself all the time!
And actually, after Heidi, Tom and Anna had gone, I got fed up of being on the bed and moved to the chair…
… and then I realised I needed the toilet and the bottles were in the bathroom. So, since I felt a bit better, I did what I normally do, and unplugged the pump, silenced the alarm, and left the pump on battery power while I went to relieve myself!
I don’t have too many thoughts today. My overriding feeling is partly just having a headache, which isn’t as bad as yesterday’s.
But aside from that, it’s the boredom. And it’s not for a lack of things to do – I have plenty of options. I think it’s just the sheer amount of time in one place. The days have felt long – and I’ve only had two full days! What’s 40 days going to feel like?
And I guess it’s weird feeling that I’m here in this room for 40 days, during which the entire focus is on giving me drug treatment day after day, and looking after me during the harsh side effects. It’s all about me, for me, and to me. Weird!
Anyway, I’m too tired to write any more. So, I’m going to stop there and go to bed!
Don’t miss my future blog posts
I normally post links to these blog posts on Facebook, and sometimes on LinkedIn. However, you may have noticed that Facebook and LinkedIn, and other social media, don’t always show you everything from all your friends or connections. So, if you don’t want to miss any of these blog posts, then I have got a mailing list that will automatically notify all subscribers of new blog posts. So, if you definitely want to see everything I post, subscribe on the mailing list.
Thanks for being interested in my journey. And always feel free to interact and let me know your thoughts.
What is a stem cell transplant?
If you want to get more insight into what a stem cell transplant is and how it works, the Anthony Nolan Trust has some really good information in its website. You can find that here: https://www.anthonynolan.org/patients-and-families/understanding-stem-cell-transplants
My 2015 transplant was an autologous stem cell transplant (a.k.a. an autograft). In 2019 I’m having an allogeneic VUD (voluntary unrelated donor) stem cell transplant (a.k.a. an allograft).
Becoming a stem cell donor
By the way, if you want to find out more about being a stem cell donor, here are a few links (UK-based mainly):
(Stem cell and bone marrow donors are amazingly kind people who offer to sacrifice their time and endure some mild discomfort to help save the lives of people like me who have a type of blood cancer – lymphoma or leukaemia.)
Love you lots dear Number One Son, even when you’re bored! Xxx See private message for some thoughts to un-bore you, I hope!
No-one would envy you your 40 days and nights, Andy, but you make it a very interesting journey. I’m amazed you can even think about work – though I remember when I was sick myself a year ago, having something else to think about that maintained a connection to the world outside was very beneficial.
Hang in there…
Must be a bit like being shut up in the ark. (Except no animals etc)!! Henry and me pray every day. Love you. Xx