Up and down
My Allograft 2018/19 – 16. 28th February 2019
By Andy Burrows, 28 February 2019
The tedious last few steps
There hasn’t been very much to report in the week (almost) since I last posted an update. And it is starting to drag to be honest.
The summit of my Everest climb is in sight, and yet still feels so far away. Those last steps seem so slow and tedious.
And yet I’ve kept going in the right direction.
I’m now free of tubes most of the time, including the syringe driver pump. So, I feel a lot more free to wander around my room. It’s amazing how off-putting it is being connected to a drip when all you want to do is get up out of your chair and walk round to the other side of the bed to get a book off the table!
And all my blood counts are up in the normal range now. A week ago, my neutrophil count was still just above zero. Now it’s more than 2.5 (which is normal). My platelets, which had been down at 16 and causing me to need a platelet transfusion 10 days ago, are now well over 200!
So, I’m told that officially means that the donor cells have “engrafted”.
Aside from that, it’s been variable.
I’m still not eating, because everything tastes of cardboard. I know that will improve in a few weeks, especially when I get home. But even with the high energy shakes and Fortijuces I’m still losing some weight.
Quite often I just feel washed out and tired. Sometimes I feel ok in the mornings and fall asleep increasingly in the afternoons. Sometimes it’s the morning routine that gets me – having a shower and getting dressed forces my heart rate up and I have to sit down for ten minutes before I can do anything else.
And my diarrhoea, which had reduced to a “tiny amount” just over a week ago, has still not gone away completely. Sometimes it comes back with a vengeance. Sometimes it’s manageable. But it hasn’t gone.
And it needs to. If that goes away in the next few days, I can go home.
Thinking of the descent
If my Everest analogy likens the end of my hospitalisation to the summit, then my “recovery” after going home must be like the descent.
But it’s not quite like the Everest descent. I’m pretty sure the Everest descent is quicker than the ascent. Whereas in my case, the recovery is a much longer, slower, process than the gruelling five-week transplant. It may not be quite so intense or painful, but the challenges are simply different.
And they certainly take pains to prepare patients and families for this. The Clinical Nurse Specialists for post-allograft care come and do more than one “discharge talk” to make sure you take in all the information before you go home.
Don’t forget about me later this year
The next part is probably the part I feel most apprehensive about.
My big worry is that it’s so hard for people outside the situation to comprehend.
Surely when I’m out of hospital, I’ll be in the clear and I’ll be back in business soon? Well, not at all, actually!
I actually still have a year or more of slow recovery. And in that time, I really expect people will forget about me, or think that I’m up to more than I am. They’ll wonder why I’m not back in church, back in work, and why I’m not being very sociable.
I expect misunderstandings with friends and family, who expect I’ll be up to having visitors or going out for coffee, because I will “look fine” (especially once my hair grows back).
The reality is that I’m restricted by a load of dos and don’ts for a long time.
I’ll try to summarise it to give you a picture. And as I do so, bear in mind that all the timings and dates are rough expectations. With an allograft, every patient is different, and in some cases some things take longer, some shorter.
As I mentioned last time, more than 50% of patients get readmitted to hospital in the first three months, battling with most likely one of the three main risks: infection (virus, bacterial or fungal), Graft vs Host Disease (where the new donor immune system and my own residual immune system start fighting), or reactivation of the glandular fever virus (which most people have had, whether they suffered much with it or not).
In the first three months, I have two follow-up appointments per week in Southampton. I have to wear a mask in the public areas and waiting areas of the hospital. This will be reduced when I’m ready and then I’ll be able to go back to care at Basingstoke hospital (shared at first) at some stage.
I’ll be on the immunosuppressant drug, Cyclosporine, throughout that first three months (as well as a bunch of other pills!). This prevents GvHD. And the aim is to gradually ween me off that, so in three months time my donor’s immune system will be able to flourish by itself and start to do what it’s supposed to do.
But even then, bear in mind that my immune system will be like a new born baby’s. So, for several months after that, I’ll still be vulnerable to all kinds of infections.
It may take 6-12 months to shake the fatigue, which when I first get home will probably mean daily afternoon naps.
For the first month or two (or three), at least, home will need to be a bit of a protective bubble, with initially no visitors allowed. And then visitors will need to be clean and healthy! Keeping clear of infections will be serious business – and I’ve seen how serious they take it in this ward!
I can’t do housework or cleaning, inside or out, because of the fungal infections that hide in dust and grime.
I have to boil my water (even if it’s bottled) and stick to a careful diet that excludes certain foods. I’m advised to stay away from foods that are high in fibre, spicy or strong in any way, because of the strain on my digestive system. That’s partly because of the mess they’ve made of my gut with the recent chemo. But even after that’s got better, any inflammation (brought on by spicy food or stuff that’s hard work to digest) can cause GvHD.
I have to cover up if I’m out in the sun, and stay out of the sun as much as possible. Factor 30+ has to be worn on exposed skin. Again, this is because sunburn can trigger GvHD.
Those precautions start to be relaxed as I approach the 12 months mark.
So early in 2020, I’ll be starting to venture into public places like church, offices, shopping centres (although later this year, I may be able to have the odd trip into a shop or supermarket if it’s not busy).
That basically puts me out of work until mid-2020, since I’m self-employed and can’t venture out to interviews to seek work until I’m confident I can get on a packed train or walk through a busy office.
And, of course, by that stage, almost two years of my life will have been dictated by cancer treatment and the managed recovery.
First things first
But, I only give that outline in the hope that it encourages you to keep thinking of us, even if I’m not blogging so frequently, and even if you happen to bump into me looking quite healthy!
And for my own sanity, the above is like the map that leads back to Kathmandu from the summit of Everest. It’s the direction, the rough expectation.
The only way to get through it is one day, one step, at a time. And of course, I’ll try my best to keep smiling and keep positive as always.
Now, for those last few steps to the summit….
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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.)