Frustration and joy
My Allograft 2018/19 – 10. 5th February 2019
By Andy Burrows, 5 February 2019
Same snow, different hospital
Well, the freezing, sub-zero, temperatures of the weekend have gone… not that I noticed much looking out my window on Southampton, which managed to stay clear of the snow and ice.
It was weird feeling left out of the snowy fun in Basingstoke. By all accounts the situation on Thursday evening (31st) were very much like those on 21st December 2009. That sticks in my memory, because I abandoned my car in the snow, and walked home from Basingstoke station for 2 hours with an aching gut. That was four days before being rushed into Basingstoke Hospital with what turned out to be my first experience of lymphoma (read about that here).
Made me think, “same snow, different hospital!”
And things are slow in hospitals at a weekend – justifiably, before anyone thinks I’m making a political point. My only point is that things slow down.
The pathology lab takes longer, for example, to get results back after tests. And so, I felt like I chased the results of my “snot test” almost all day on Saturday, before being told on Sunday that they’d double tested it – one result negative, the other positive but low level.
So, I had to do another “snot test” on Sunday morning (yes, it’s as unpleasant as it sounds). The results came back yesterday morning – negative.
The problem is that the normal guideline is that if you have two negative tests in a row then you’re fine. Since mine have alternated between negative and positive, the doctors have stayed on the cautious side.
They’ve carried on with treatment. Fludarabine on Saturday and Sunday. And then Cyclosporine on Sunday and Monday. The latter is an immunosuppressant drug, doing more to prepare my immune system to accept the new stem cells on Wednesday. I’ll have more of that today.
So, the team stayed cautious in the sense that no one comes in my room without a plastic gown and a mask… and I have to stay in this little room.
And then suddenly, during yesterday afternoon, the gowns and masks are gone. The nurse says the doctor has confirmed it’s ok. And they start talking about when they can move me into one of the bigger rooms…
And then two hours later a junior doctor comes in and says my test was positive, so I’m going to have to be tested every day until it’s negative…
So, I’m confused. But apparently, there is still trace of low level rhinovirus, even though I am “asymptomatic”, i.e. I don’t look like I’ve got a cold. I’m not even sniffling now!
Oh well, can’t have everyone else catching this lethal cold-that-doesn’t-look-like-a-cold!
Although, being serious, I understand if patients get a bacterial or fungal infection, they have the drugs to treat them effectively. But they don’t have too many options when it comes to viruses, so they take extra care.
The most toxic drug
But, as I said, treatment went ahead. So, I had the most toxic drug yesterday – Melphalan. I remember this one from my autograft three years ago.
The drug itself only takes 30 minutes to be infused. But it finishes off any white cells you have and your ability to regenerate white cells.
After the Melphalan, without being given stem cells, I’d have no immunity, so I’d eventually pick up an infection that I would not be able to fight.
It’s also so toxic that your kidneys have to be protected by having fluids constantly filtering through and washing it away – for more than 24 hours. So, I’ve been on a drip (apart from a break for a shower yesterday morning) since Sunday night. And I’ll only be disconnected finally tonight (I think).
The effect of that is that they have to make sure that all these fluids that they’re pumping in are actually coming out. So, they’re paying special attention to those bottles of pee, weighing them and comparing it to how much is going in.
At one stage it looked like I wasn’t peeing enough, so they gave me some Frusimide – that basically makes you empty your bladder (ahem) almost immediately! Don’t want to be having any fluid retention and swollen ankles and stuff!
The other amusing thing is that they’ve discovered the later side effects are reduced if you suck on ice about an hour before the infusion. So, I was given an ice pop – Disney Frozen theme – strawberry flavour – yesterday afternoon.
Countdown to crappiness
Every day I’ve had Cyclosporine I’ve had a headache. Paracetamol, and even Codeine, hasn’t properly got rid of it at the time. That’s partly why I haven’t written on the blog for a few days. My brain was just too fuzzed.
It has made for a fairly boring couple of days, where I’ve spent most of the time just lying in bed dozing or reading Harry Potter and the Philosopher’s Stone.
My last dose of Cyclosporine is today I think, at least via IV. (It may move to tablet form after that – we shall see!) I’ve been told that they can give it slower, which should lessen the headache.
(By the way, it should be obvious by now that I’m writing this in the morning – looking forward to today, rather than looking back on it!)
But ultimately, I know that now I’ve had the Melphalan it’s only a matter of a few days before the real crappiness begins – mouth sores, stomach sores, sickness, etc. I know that my blood counts show that I’m already neutropenic – my white cells and neutrophil levels are below 1.0 already (at the similar stage in my autograft, both were above 4.0).
And I’ve heard that I’ll be fitted with a naso-gastric tube before all that kicks off, as they want to be able to feed me and keep me nourished when I go off my food.
The transplant step
One of the weird things is that I’m hardly giving a thought to the transplant tomorrow.
My donor will be donating their stem cells today. I don’t know much about my donor, and it wouldn’t be right to write about it publicly anyway. But I do know that they are overseas. So, I know that after their harvesting, the stem cells will be carried by a volunteer on a plane to Southampton in time for my transplant tomorrow.
But for me, in the midst of it all, the transplant feels like just a step in a pretty big process – albeit the most significant step.
Finally, I always believe that if you look hard enough (and you normally don’t have to look that hard), every day contains things to be thankful for, things to make us happy, things to bring us joy.
When we talk about joy, we normally think of being overjoyed, or bursting with joy, like an overwhelming warm feeling. But for me, joy starts small, with the smallest thing that is good, or brings a smile or contentment.
I was emailing with a friend yesterday, and at the end of her last reply she said, “Enjoy what the Lord brings along today.”
And that sums up my attitude and determination really well. Even when I’m in pain, when I’ve got a headache, mouth sores, whatever; even when I’m fed up about the size of my room; even when I’m nervous about the pains to come; I will find something, however small, to enjoy. And I will be thankful for it.
This past weekend, it was photos and videos of our dog Benji bouncing playfully in the snow. It was Harry Potter and the Philosopher’s Stone. It was episodes of Grimm. It was chatting with Heidi and the kids on the phone or on text.
Yesterday, I got a lot of pleasure (even though my head was throbbing) from finding music on Amazon Prime Music. I came across a duo called The Piano Guys and their interesting mingling of classical, traditional and pop music, including my favourite, a combo of the Bourne movie theme and a Vivaldi concerto. Worth a watch here: https://youtu.be/09RUuTAM2H0.
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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, 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.)