My Allograft 2018/19 – 22. 2nd June 2019
By Andy Burrows, 2 June 2019
Ok, so I’ve changed my mind!
I was thinking, when I wrote the last blog post, that it would be too boring to write any more on the blog about my allograft journey.
But I’d forgotten two things:
Firstly, I had forgotten that one of the reasons I write this blog, and write about my experience with a stem cell transplant, is to help others who go through the same thing in future. And I was feeling so bored with it all last time that I really didn’t think there would be much else I could write that would be of any help. But actually, whilst it’s a bit drawn out, there is not nothing worth saying.
And secondly, I’d forgotten that this blog is one of the primary ways that I keep people up-to-date with how I am. I am now allowed to see people, and I do see family and a few friends occasionally for coffee. But I am not visible on a daily or weekly basis in public. And it’s going to be several more months before I become visible. So, it’s probably worth continuing. And if you’re reading this, thank you for being interested!
I was going to turn my attention to writing a new book. But I’ve also decided that it’s not worth thinking seriously about writing another book until next year, when hopefully I’ll have the full benefit of hindsight.
What am I for?
So, it’s Day 115 (from the day I received my donor’s stem cells).
Facebook also reminded me that it’s nine years to the day since I had my last chemo in 2010 in my first battle with non-Hodgkin’s lymphoma.
I would not have chosen this path. But I am convinced there is a purpose to it.
I used to really struggle with my purpose. I’ve had to do quite a bit of ‘navel gazing’ in my life, with a run of redundancies and lengthy periods of unemployment and then four periods of serious illness.
“What am I here for?” It’s a question that I’ve asked myself over and over.
It’s a strange thing. Until now, my purpose has been completely opaque, blurred, unclear, non-specific. I didn’t know what I was supposed to be doing. Even now it’s not 100% clear.
But it’s clearer.
Sure, as a Christian I knew from a young age, in the words of the Westminster Shorter Catechism, that “man’s chief end is to glorify God and enjoy Him forever.” But there are a gazillion ways to do that, so that doesn’t really help much practically.
It has seemed, at times, as if my life has been guided more by a series of doors closing, rather than an innate sense of direction. And I’ve consequently taken (let’s say) a non-linear route!
At the moment, and for the moment, I am that guy again – the one who has cancer and writes encouragingly about the experience.
This blog is part of that. And it’s a chance to be an example of positivity and faith, especially to my kids, who mean everything to me, and who I desperately want to grow up with saving faith in Jesus Christ and a toughness to face anything.
And perhaps I wouldn’t be the person they need me to be without these experiences. Just like, perhaps, Churchill wouldn’t have been the man for Britain’s “darkest hour” without his experiences of pain and failure.
The other thing I sense is that purpose is not something we choose for ourselves. It is something that is given to us. And as such, it’s not something we are guaranteed to know. In fact, our purpose may not even be what we think it is!
So, thinking about it, perhaps the Westminster Shorter Catechism hit the nail on the head. The important thing is not what we do, but how we do it… and what we’re aiming at in the way we do whatever it is we choose (and are given) to do.
Aside from that – and moving away from deeply philosophical matters – two things strike me.
Firstly, my descent from my Mount Everest is often, shall we say, lacking in rhythm. One day is much the same as every other. Not necessarily boring. Just similar to the extent that I easily lose track of what day it is.
There are reference points – mainly my weekly hospital appointment on a Thursday (the main feature of which, apart from talking to the doctor about cyclosporine dosage and such like, seems to be how late Patient Transport will get me home!). But I have to get my other reference points from the rest of the family – when they’re going to school and work.
And that makes it easy to forget that I am actually still on the mountain, even though I’m descending. 117 days is not a long time in terms of an allograft. It is still early days. It’s another 9-12 months before the mountain will start (God-willing) to merge with the edges of the plain of “normal” life.
What I mean by that is that it doesn’t feel like I am in any danger. Ok, I have some minor issues with energy levels and physical strength, but those are the only things that manifest themselves to remind me I’m not just being lazy by staying at home and avoiding work.
The reality, so I am told, is that my immune system is very weak, such that I could pick up a life-threatening infection or GvHD from all sorts of simple things.
And yet I can’t sense those threats. I just have to trust that the doctors know their stuff. So, I try to stay out of the sun (or make sure I’m wearing Factor 50), stay out of the room when the vacuum cleaner is running, avoid picking up dog poo after the dogs, avoid dusting, polishing, gardening, cleaning, boil my drinking water, avoid certain foods,… and the list goes on.
It really is a bit like being on the mountain, on a plateau or smooth descent, and not knowing how close to the edge of a precipice I really am. I have to trust the Sherpas who have experience of the mountain and have seen what can happen. It’s got to be the wisest course of action!
Physiology vs Psychology
The other thing that strikes me is that the causes of depression are hard to pin down in individual cases.
I think I mentioned in an earlier post that I was feeling a bit down, and I’d been referred to the specialist psychologist who works with stem cell transplant patients.
I hate to call it depression, because it felt very much like being on the verge of depression. Sometimes I could feel on the edge of despair, but able to talk myself round. A lot of times it just feels like a lethargy and lack of energy, “chemo brain” making me slow with words. I said to the psychologist that I sometimes feel that I have a sigh waiting to come out – and sometimes it does.
The way I described it to my consultant the other day was that I feel, “a little tired and a little fed up.”
Even so, without necessarily knowing what they were testing for, I went to Southampton Hospital early for my appointment last Thursday, because the doctor said that one of the blood tests was only accurate before 10am.
The next day I got a phone call with a request to go and see my haematology consultant in Basingstoke Hospital to get a prescription for hydrocortisone.
It turns out that my cortisol (energy-and-happiness-related hormone) level was significantly lower than normal. So, they wanted me to start taking some steroids to boost the level. And hopefully that will help me to feel a little better emotionally.
It would be good if it was that simple.
But I’m not going to give up talking to the psychologist. It seems to be helping just to talk to someone who I don’t feel like I’m whinging to.
I’m also not sure that it would be the end of the story even if cortisol-deprivation was behind my feelings of lowness and lethargy. There’s still the question of why my adrenal gland isn’t producing enough cortisol. There are some tempting easy answers… but let’s leave that discussion for another time (if it develops into something interesting).
A milestone checked off
To round off, I should mention how all my Day 100 tests went. I had a PET CT scan, a bone marrow biopsy, and some extra blood tests.
This is a measure of how blasé I have become, numb to medical procedures, tests and discussions with doctors. I went to these diagnostic appointments as if they were just another appointment, another thing to book transport for, another thing to remember to wear my mask round hospital for.
There was a little discussion that had to take place around the results of the scan. One aspect wasn’t clear-cut. That meant we had to wait an extra week for definitive feedback on it, as it needed a discussion at the MDT.
As I said, I was oblivious to this wrinkle, and just got on with life. It could have been a week of worry… but I hardly thought about it.
And in the end, the upshot was that everything is fine.
My Day 100 milestone is past and I’m continuing to progress according to the expectations and desires of my medical team. And my cyclosporine (immunosuppressant drugs) dose is now being reduced week by week.
Good news for now. But there are a few more milestones to go – a few more long, painstaking, stretches of mountain descent. I know there are still possibilities of a top-up of donor cells, as well as needing to be vigilant of infections and GvHD.
In previous bouts of lymphoma, this stage would be where I’d hear the words, “full metabolic remission” or “complete remission”, or just “CR”. And it would be good news. Time to move on.
This time, it’s just a step on the way.
But let’s take the positives and keep this show on the road!
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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, myeloma or leukaemia.)