My Allograft 2018/19 – 12. 14th February 2019
By Andy Burrows, 14 February 2019
Feeling the Everest analogy
It’s been a week since I last wrote. And I’ve really been feeling the Everest analogy!
It struck me that when you’re climbing a mountain like Everest there’ll be days when you can think and plan ahead, perhaps even survey the beauty of the world at high altitude, reflect on the experience you’ve been through so far, and so on.
And then there’ll be days when the weather and conditions are so tough that all you can do is pack your tent in the morning, trudge through the wind and snow for a few hours, put up your tent and fall asleep exhausted and mildly frost-bitten.
You are literally just putting one foot in front of the other, following the guides, the path, and keep going even though you may feel exhausted.
And that’s how I’ve felt for the last week, and how I’m feeling now.
These are not the days to be reflective. They’re not the days to force happy thoughts on myself or “do the eyebrow thing” (for an explanation of that phrase, see this little video I did). These are not even the days to beat myself up for not smiling.
These are the days to metaphorically hunker down, and to get from morning to bedtime via a series of mundane and unpleasant steps. Just one foot in front of the other, trusting that smiles will return soon.
Many different challenges
The last week has been a blur of different challenges. I’ve been feeling sick, trying different combinations of anti-sickness drugs, some of which cause drowsiness or headaches. So, those things have sapped me of energy, and I’ve spent a lot of time just lying in bed.
I went off my food. In contrast to when I was here for my autograft three years ago, the main meals are literally horrible. The hospital has changed catering providers at some point, and not for the better! So, I initially didn’t go off my food because of feeling sick, but mainly because it wasn’t very nice anyway! All I was managing was breakfast cereal three times a day, and maybe some jelly and ice cream.
And now I’m completely off my food because my stomach is too sensitive.
I had an NJ tube (nasojejunal feeding tube) inserted on Saturday. This was supposed to be to give feeding options when I can’t eat. It is not a pleasant experience having to swallow that tube!
And I vomited that out on Monday! And have proceeded to vomit every day since (twice yesterday).
My mouth and throat are not sore, but my tummy is sore. Even when I drink water – which I have to in order to take the pills I’m given – it makes me feel sick.
And, believe me, I’m sparing you some of the gruesome detail when I say that the mega-diarrhoea is getting tiresome (having “the runs” while attached to a drip is a bit hazardous!). And the nurses actually have to measure and test the stuff as well, so it has to be caught in bedpans. I will leave it at that!
I also had a platelet transfusion yesterday evening.
Some good news
However, there was some good news.
My consultant turned up on Tuesday afternoon in my room without a plastic gown or mask.
That meant that they no longer considered me an infection risk. Two “snot tests” in a row had come back negative, meaning that my cold-that-never-felt-like-a-cold had gone.
And that meant that as soon as one was available, I could move back to one of the nice, big rooms. This is not favouritism, by the way. The air filtration system in the newer rooms is better in the sense that they know that it’s always clean air going into the room. And so they like the most vulnerable patients (who are mainly the allograft patients like myself) to have these before anyone else.
The move yesterday was tiring, though. I feel so useless! Even small things are exhausting at the moment. I had to get the nurses to pack my suitcase for me and carry all my stuff down 30 metres of corridor!
Even having a shower is exhausting. I have to sit on my bed for 15 minutes getting my breath back afterwards!
But the room is nice. It’s what I call proper accommodation, rather than four walls that can squeeze some furniture in somehow.
The other good news is that our house is now cold-free, and therefore Heidi and the kids can start to visit me again starting tomorrow. I’m looking forward to that!
Only a few more steps
I asked the doctor on the ward round today how long I have to endure the pain in my gut and not feeling like eating and drinking. Apparently, it’s only a few more days, perhaps a week, before I start to feel better.
Basically, I’m waiting for the stem cell engraftment to start picking up pace, so that I have some neutrophils to fight infection in my gut. As soon as that starts to happen, I will start to feel better.
That gives me a little courage to relax about the eating and drinking. I am carrying a little extra weight (ahem!) which I can afford to lose (all put on in the last six months through the ups and downs of the chemo treatment). And so, having a few days of being hydrated and given nutrition through a drip is not such a horrible thought.
So, I’m hunkering down, hiding in my little tent (metaphorically), but otherwise just putting one foot in front of the other. And I’m following the path and the guides (my doctor says that I’m pretty much exactly as they were expecting me to be at this stage). And I’m trusting that very soon things will, little by little, start to get better, and I’ll be able to pause and reflect on how far I’ve come.
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.)