Still plugging away
My Allograft 2018/19 – 13. 18th February 2019
By Andy Burrows, 18 February 2019
Allo vs auto
It’s Day +11 today. Eleven days after I received my donor’s stem cells.
I’ve been in hospital 21 days.
To set that in perspective, my autograft hospital stay was 23 days in total, back at the end of 2015. This time around, I still have two or three weeks left.
So far, my assessment is that not only is this allograft a lengthier treatment in hospital; it’s also been much more gruelling physically from the first day of treatment, and the low period is longer.
I’m still in that low period, exhausted, feeling sick, unable to eat, having diarrhoea like I’ve never experienced in my life. I’ve never been actually sick during any cancer treatment I’ve had in the last nine years. With this allograft, I’ve vomited at least once on five out of the last seven days.
But I should be turning a corner soon.
Every day I’m looking for signs that I’m at the start of the improvement. Am I feeling less sick? Less exhausted? Am I able to eat or drink better?
Introspection and determination
And yet, that statement alone shows just how mundane and introspective it is in this room.
Don’t get me wrong. I have plenty of things to distract me. TV, three different books to read simultaneously (including Harry Potter and the Goblet of Fire), Supercharged Finance work (learning all about Facebook advertising), Netflix, PlayStation games, listening to music, etc…
Not to mention that I can now have family visitors, so it’s been lovely to see Heidi and the kids over the last three days.
But there are times when I can’t muster the enthusiasm to do anything except having background music on while I lie in bed, dozing.
And then my mind wanders off to how nice it would be to do things that I currently can’t do. Things I, perhaps, take for granted normally, which I should be more grateful for.
Like, even though I can’t eat because I feel like I’m going puke it back up, I do fantasise about lovely food – Dominos Pizza, bacon sandwiches, scrambled egg on toast, sausage and chips, donuts, battered cod and mushy peas, a big cheeseburger and a pint of Peroni.
I miss our two-year-old cockapoo Benji like crazy, with his cheeky, playful and affectionate ways, his cuddles, and the way he looks into my eyes with such love.
I miss the walks in the countryside with Heidi and the dogs. I get jealous when the exotic holidays come on the adverts on TV.
All that thinking is pointless. Well, except in the sense that it is visualising the hope that keeps me going. It’s pointless letting it get me down.
This climb, this ordeal, this challenge is all necessary to give me a chance to enjoy more of the above for longer.
So, it shouldn’t be faced with complaint, negativity, resentment or resignation.
It needs determination and belief… and perspective: The perspective that sees the future joy as outweighing each painful current step; the perspective that grabs every ounce of enjoyment that appears every day.
I’m doing ok, but there’s a long way to go
I’m waffling! Sorry!
Medically speaking, I’m doing well so far. Even with sickness, diarrhoea, stomach pain and exhaustion, I have still avoided infection. All my ailments are well documented side effects of the treatment itself.
I just have to avoid infection – which is why I’m in this isolation room while I have a very weak immune system.
The doctors and the nutrition team have also decided that, since I’m free of infection, I should be fed a bag of nutrients through my Hickman line. This was set up last night – a two litre bag on the drip over 48 hours.
That is causing some problems today. My Hickman line has three lumens – in other words the one central line splits into three, so that I can have three different connections at the same time.
One of those connections is connected 24/7 to a syringe driver – a little pump – that injects anti-sickness drugs steadily over 24 hours.
Another is now hogged by this bag of nutrients for the next 2 days.
That only leaves one left for all the other drug treatment and the platelet transfusion I have to have later. So, the nurse has a bit of a challenge trying to work out how to fit all that in.
But also, seeing all the different ways that the team can manage my different side effects, and indeed the progress of the transplant, it makes me aware of what a long slog this will be.
This assessment of how I’m feeling, what symptoms I have (whether I have infections or other transplant-related complications like VOD or GvHD), and tweaking the treatment and the drugs, is going to be a regular feature of my life for months to come, even when I get out of hospital.
It is a bit like climbing Mount Everest. Even when you’ve reached the summit, there is still a fairly dangerous descent, progressively getting easier until you’re safe at home.
One foot in front of the other. Keep smiling!
Don’t miss my future blog posts
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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 (please!), 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.)
I just wanted you to know that I love your honesty, with all that is happening- I can completely understand how your thoughts must swing from one thought to the next, and just cannot imagine what it must be like to be in such isolation.
It has been so encouraging and rebuking to me to hear your thoughts on taking one step at a time, when you are feeling so poorly. I have had a bit of a recurring viral thing which comes and goes and it affected me yesterday, and I get frustrated at not being able to to the things I had planned, and to be more active and useful! But when I read about you hoping for some small sign of improvement from day to day and minute to minute, (which is how I have been feeling just with my very minor ailment) I just think what a moaning Minnie I am!
Thank you, that with all that you are going through, you are such an encouragement (though am sure it must get you down, with not being able to do all the things you would like to, as well as just to live something of a normal life).
Take care, and I continue to pray for you and the family, as we all do.
I think you’re echoing what most people say to me. And I’m glad that my story helps people to gain something of a healthy perspective.
Right back when I was in hospital the first time round, nine years ago, I wrote a blog post called, “Rejoicing in my derailment”. http://andyburrows.me/rejoicing-in-being-derailed/ I think that’s the ultimate perspective.
And ever since, I try to say (out loud if possible), “God willing” every time I talk about plans. He knows best.
Thanks, as ever, for your prayers and everything that the church is doing for us.