Packing My Bags
By Andy Burrows, 28 November 2018
I don’t think I needed anything to remind me of the enormity of what’s coming, but I got a reminder yesterday anyway!
For the last month it’s been quiet. No treatment, only one short hospital visit each week, hair starting to grow back.
I was phoning the stem cell transplant nurse in Southampton once a week to check the situation. And for several weeks all they could say was that they were still looking for a donor. There were always some they were talking to, that they’d found in the various donor registers – some full matches, some “9 out of 10” matches, some nearby, some further afield (USA, The Netherlands and Israel were mentioned).
And, of course, the first thing that they have to do with potential donors is to retest their blood to make sure that the information in the register is correct. And that takes a couple of weeks or so. And then there are health checks and so on.
By the way, if you want to find out more about being a 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.)
Anyway, then one day I call, and the nurse says that she’s expecting a report to come through that day that looks very hopeful. The next day I get a phone call from the nurse asking if I know my weight, because she needs it for a conversation with my donor in the afternoon.
“So, I have a donor now?!” Just a small piece of news to drop casually into a conversation!
And so the ball starts to roll.
Some steps are bigger than others
Before the transplant there is a series of tests and appointments to go through, and obviously some coordination with my donor.
What is now confirmed is that my hospital admission date is Tuesday 11th December 2018.
Before that I have:
- Bone marrow biopsy (27th November)
- Consent form and consultation (3rd December)
- PET CT scan (yes, another one – 3rd December)
- Echo cardiogram (4th December)
- Kidney function test (4th December)
- Lung function test (4th December)
- Hickman line fitting (6th December)
And some of these things are bigger than others.
In terms of taking things a step at a time, it’s good to have a schedule now. It’s in my calendar. I don’t have to worry about too far into the future. I’ll just take each step as it comes.
And yet, some of these steps are quite big, and the hospital admission feels massive.
The hospital admission feels massive partly because from that point on there is no going back. My old immune system will be gone and my new one will be trying to engraft, and I’ll be into a whole new and unknown world of complications.
The Anthony Nolan Trust and Bloodwise do some really good material, if you’re interested in reading more about it in detail. Here are a few useful links:
https://bloodwise.org.uk/sites/default/files/documents/stem_cell_and_bone_marrow_transplants_the_seven_steps.pdf (this is the 150-page book that I was given to “prepare” me!)
But however much I read, I guess all they can prepare me for are the types of things that could happen. Infections, being readmitted to hospital, fatigue, Graft vs Host Disease, etc. Unlike the autograft, which was fairly straightforward by comparison, there are a number of things that have to be monitored and closely managed during and after my hospital time.
And that just makes it like looking forward into fog. I can see a few steps, but then just fog.
And I’m not going to try and make myself look stronger than I am – it does cause me some anxiety. I’ve woken up a couple of mornings with an aching jaw from where I’ve been grinding my teeth during the night with subconscious anxiety. And when I wake up, I always seem to have the isolation room in Southampton in my mind (and I know what it looks like from three years ago).
A stiff jolt
And the “reminder” that I was referring to in my opening paragraph was the bone marrow biopsy yesterday.
I’d not been looking forward to it. I’ve had about five of these things in the past. One was painful. The others were “uncomfortable”.
I’m so glad I have never actually seen what they do! It’s done while you’re awake, but all the action goes on behind your back while you’re curled up on a bed, lying on your side. They’re basically using a little manual drill to break through the bone in your pelvis and get a little bit of bone marrow with a syringe.
So, I was a little nervous going in, knowing that it might be ok, but it also might be painful! I was also trying to make light of it. Just another hospital appointment to tick off the list. I did the 50-minute drive there, and 50-minutes back, to Southampton Hospital, on my own. I took my laptop to fill the time in the waiting room, as normal.
But youch! Blimey! It was a bit painful!
“There’s some gas and air (Entonox) available if you feel you need it,” said the healthcare assistant before the doctor came along.
I thought I’d have it ready just in case. I didn’t really think I’d be sucking on that mouthpiece so much for so long! But I needed that room-spinning, drunk, feeling to dampen the pain where the local anaesthetic hadn’t fully worked. “Do you need some more local?” says the doctor!
“Er, yes please!” says I. What I really wanted to say (perhaps I did say it and I was too “drunk” to remember!) was, “too bloody right, what are you waiting for?!”
And then a couple of hours later, when I got home, I came down with the cold that I’d been trying to fend off for a couple of says.
And here I am, 4am the next morning, unable to sleep because I’m so sniffly and everything is whirling through my mind. The catharsis of a blog post is what I really needed.
It just made me think – it reminded me – you know you’re going through something pretty bad when even the preparatory tests are painful!
And yet, what can I do other than take one step at a time, and try to keep smiling and appreciating the good in each day?
The big step to come
Thirteen days, a busy week of tests, talks and pre-transplant procedures. And then I’ll be into the fog, climbing my Mount Everest.
And yet, the reality is that it won’t be as foggy as it feels. The nurses and doctors will tell me what’s happening each day. I’ll be limited to my little room. And for six weeks, day in, day out, I’ll be under close supervision by experts. All I have to do is to do as I’m told and keep myself as busy as I feel up to.
The fact that I’ll be in hospital over Christmas and New Year is just something we have to accept.
The one who has the more difficult end of the deal, really, is Heidi. While I’m in my little room, being waited on hand and foot, she has to keep things going at home as best she can – school runs, meals, dog walks, a part time job, house cleaning… and wanting to come and see me regularly even though it means almost two hours of driving. And that’s without wondering about the emotional impact of seeing my condition worsen (which it has to do before it gets slowly better).
Onwards and upwards
Thanks for your support, your words of encouragement. Even just knowing that you read my blog encourages me, because I know you care and that you’re quietly cheering me on.
People often ask what they can do to help. That’s really difficult to answer, because I think it’s natural to feel awkward asking for the things that would really help. But actually, in reality one of the biggest things is just saying those words of encouragement, whether that’s in a card, an email, a text message or a comment on a Facebook update.
Just knowing that I’m in my friends’ thoughts helps to overcome the feeling of loneliness that comes from not being free to physically interact. And that’s something that is going to be an issue, not just now, not just while I’m in my isolation room in Southampton, but for many months of next year.
Don’t miss my future blog posts
Finally, you may have noticed that Facebook and LinkedIn, and other social media, don’t always show you everything from all your friends or connections. So, if you don’t want to miss any of these blog posts, now I’ve got a reason to write some more, then I have got a mailing list that will automatically notify all subscribers of new blog posts. So, if you definitely want to see everything I post, subscribe on the mailing list.
Thanks for being interested in my journey. And always feel free to interact and let me know your thoughts.