The long trek goes on
My Allograft 2018/19 – 19. 6th April 2019
By Andy Burrows, 6 April 2019
It’s 58 days since Day Zero, the day I received my donor’s stem cells. It’s five weeks since I came home from hospital.
And the reason I’ve left it almost a month since I last wrote an update is because progress is so slow.
I’ve been travelling down to Southampton Hospital every Monday and Thursday for check-ups. The NHS has been providing free transport for me to save me driving, mainly because the doctors worry about me driving so far while tired.
Up to a week ago, two problems were lingering, not getting worse, but hardly getting better.
One was that I was still having trouble with eating. Most food tasted so awful that I couldn’t swallow it. Gradually I got ok with having breakfast cereal and jelly. But I had to supplement my calorie intake with Fortijuice, so that I didn’t lose too much weight.
The other thing was that I was still having diarrhoea. This was what they were more concerned about, because it can be a sign of GvHD (graft vs host disease, where my own immune system and my donor’s basically fight against each other).
With the latter, they’d not found signs of infection, and it should have been getting better. Strictly speaking they should have readmitted me into hospital, given me a colonoscopy and put me on prednisolone (nasty steroids). But they decided, since it didn’t seem to be getting worse or causing me to feel ill, to give me a milder steroid (budesonide) and then see what happened.
If I hadn’t shown signs of improvement this week, I would have been readmitted. But thankfully, things are now moving (pardon the pun) in the right direction!
With the eating, my mouth sores gradually cleared up, a short course of antibiotics cleared up a sore throat, and very very gradually things started to taste tolerable. I just had to keep trying little bits of a variety of things to see what was ok.
Just in the last few days, I’ve managed to ditch the Fortijuice and eat almost normally. I still can’t manage as much as I used to (no bad thing!), and things don’t taste completely normal. But at least I’m now ok from a diet point of view.
And, as I thought it might, that has coincided with turning a small corner with my energy levels.
Prior to this past week, the most exercise I was getting was on my hospital days, and I was light headed almost every time I stood up, and wobbly on my feet.
I’m pleased to say that in the last week I’ve managed to get out and do half our normal dog walk on three or four occasions. Pretty tiring at first, but it’s getting better gradually, although it feels like a whole five-mile dog walk, or anything normal, is several weeks away.
The main reason for the fatigue and light-headedness is that I’ve been anaemic. My red blood cell count is the only blood count that didn’t quickly rise into the normal range. That also explains why I’ve looked so pale and felt so cold, even in a warm house.
The reason for this is that – weirdly in my view – my donor’s blood group is different to mine (even though the donor was a “full match”), so my blood group will change. (How cool is that?!) And because it takes time for my body to get used to changing to a new blood group, the red cells take a lot longer to engraft than the white ones and platelets.
On my head and in my mind
I also (on my head) still have no hair. I’m not even starting to feel a stubble returning yet. And that feels like a long time.
But I guess it’s the psychological side (in my head) which is most significant.
I was saying to someone the other day that this allogeneic stem cell transplant is by far the hardest thing I’ve ever done. No other treatment I’ve had in the last ten years comes anywhere close. Even the autograft I had at the end of 2015 seems easy compared to this.
I feel like I’ve graduated into a different league of treatment!
Not only has it been physically gruelling, but the time it takes to feel better, and the physical restrictions that have to be adhered to, call for much more patience and perseverance.
For a few weeks after coming home I wasn’t allowed visitors. Now I am allowed visitors, so long as they’re healthy and haven’t been exposed to infections (especially things like measles and chicken pox, but even coughs and colds). And I have to be careful I don’t tire myself out too much with talking!
When going to the hospital, I have to wear a mask the whole time I’m in the public areas and waiting areas… even in the patient transport ambulances.
There are restrictions on my diet. I will have to cover up in the sun because sunburn causes GvHD. I can’t drink alcohol or eat spicy food, such as curry or chilli, because that can bring on GvHD.
I’m not allowed to do housework, or even be in the same room when a vacuum cleaner is being used, because dust carries fungal infection. The same applies to cleaning up after dogs and doing outdoor jobs like sweeping or jet washing the patio.
So, I feel a little useless and cooped up.
Being able to get out in the countryside as my energy levels rise should help, and the return of working taste buds is really positive too.
But the thought of staying away from public gatherings – church, work, school, restaurants, supermarkets, town centres, tourist attractions, theme parks, etc – for the next nine months (so they say), is fairly incomprehensible, as I’ve said before.
This whole thing, as I knew it would from the start, is going to create a long hiatus in my career – more than ever before. By the time I can think about setting foot back in an office, I will have been out of work for 18 months.
And that plays all kinds of psychological tricks, and particularly on confidence. Depression would be understandable, I think.
The benefit of having a project
One of the things that I find weird is hearing a couple of people around my age talking about early retirement in a few years! People are actually coming towards the end of their careers while I’m wondering how to revive mine!
It feels like I’m in a horse race where a lot of people have got the finish line in sight while I’m still struggling to get on my horse!
Supercharged Finance is keeping my brain challenged, and it’s something that only needs a laptop, internet connection and my brain. My real hope is that the business will become sufficiently profitable that I won’t have to worry about finding contract work again in 2020.
In other words, my vision is that it becomes a sustainable business, rather than a bit of fun that keeps me busy.
But even if it doesn’t work out, ultimately, it will have provided a focus and helped me to avoid wallowing in self-pity.
And, to be honest, I’ve always tried to have growth projects. No gap, for me, is purposeless.
When I think back…
In 2015-16, with time off for my last relapse and my autograft, I self-published three books.
2010/11, recovering from my first round with lymphoma, it was all about blogging.
In 2009, unemployed in the global financial crisis, I learnt marketing and tried to set up a freelance consultancy business.
Even back in 1991 when I was unemployed after graduating from Uni, I didn’t just churn out job applications. I studied the Bible – specifically the book of Daniel and the subject of eschatology.
I always have to be learning, pushing my boundaries.
And whilst the constant trial and error, falling down and failing regularly, can get tiresome, I dread to think where I would have been without that attitude.
Setting (realistic) goals that force you to learn and do something new, experiencing a sense of achievement when you’ve created something, is great advice for anyone going through times like this.
Knowing that it is what it is
Finally, I have one more reflection on my mind…
But I’ve gone on long enough! So, you’ll have to wait until next time to read about it…
Watch this space!
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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.)