My Allograft 2018/19 – 5. Thursday 24th January 2019
By Andy Burrows, 24 January 2019
Back to CR
I saw the stem cell transplant director in Southampton Hospital a few days ago. And she said she thought I’d done really well with the chemo treatment I had to fit in over Christmas.
That is, considering the strength of the drugs, it was pretty good that I’d avoided infections and blood or platelet transfusions, only needed two GCSF injections, and had turned up to see her looking well and in good spirits.
It was also good – a bit of relief actually – that the latest PET CT scan (which I had last week) came back with no trace of lymphoma. She said it was, “consistent with CR”.
Yeah, that’s what I thought… and then I realised… Complete Remission!
Great news! That bright spot on my liver was no longer showing up, and no other abnormalities were visible.
And that’s exactly what I need in order to finally go ahead with the stem cell transplant.
On Tuesday I was in Southampton again, repeating the three organ function tests I had at the beginning of December – kidney function, lung function and echocardiogram. I’m not even slightly worried about the results of these. They’ve never given me any problems. But they are important, so they can check my main organs are strong enough to withstand what they’re about to throw at me (liver function is checked as part of a standard blood test).
The freakiness of normality
And so, my hospital admission date has been set for next Monday, 28th January. And after “conditioning” treatment (chemo and immunosuppressant), the transplant will be the following Wednesday (6th February). And I’ll be in hospital until mid-March.
So I feel a bit of a countdown going on. But it’s only in my head.
The weird thing is that things feel… well, normal… freaks me out a little bit!
I’m avoiding public places (most of the time) to try and avoid catching a cold or flu, which would derail things. But aside from that, I seem to be going about things almost as normal. I walk the dogs with Heidi, I do lifts for the kids, I keep the SuperchargedFinance.com website up to date with new content, I watch TV, make dinner, help with housework, and other stuff.
Someone even said to me the other day that I look well.
On two counts that’s mildly frustrating. Firstly, because I do feel the physical side-effects of chemo still lingering. I’d sum it up as just feeling old really – I feel constantly tired, but not too tired that I can’t push myself to keep going; and I feel a combination of joint aches and weakness. I heave myself out of bed, or up the stairs, or off the sofa; but once I’m up, I’m ok. It’s all very mild, so it’s not obvious to anyone but me. So, I try not to make a fuss and just get on with whatever has to be done.
Secondly, it’s the bit that is hard to get people to understand. It even feels weird to me. Normally you’d think of “complete remission” as being the good news at the end of all treatment, and then you get on with life. But in this case, I have to be well, I have to be in complete remission, I have to be healthy, in order to go ahead with the most strenuous part of the treatment plan.
But it’s the normality of life that is partly what’s making me anxious.
Everyone else in the family has their routine, their work, college, school – their purpose. And I’m buzzing around getting involved, helping out, and doing stuff that I think may be useful, making the most of the time… but in the back of my mind just counting down to the start of the mountain climb that stands between me and the rest of my life.
But it’s just a few days – one step at a time. Keep smiling!
Worth the worry?
And a few thoughts have come to me recently.
Firstly, I was pondering the probability of negative outcomes – actually I was wondering why I don’t ponder about negative outcomes more… and wondering if I should – and I happened to read Luke chapter 12 in my daily Bible reading:
Jesus said, “Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest?” (vv25-26)
Quite apt – it’s not worrying that’s going add hours, days or years to my life!
And it reminded me of Corrie Ten Boom’s famous saying:
“Worry does not empty tomorrow of its sorrow. It empties today of its strength.”
So, time to move on from pondering those negative possibilities…
The day after tomorrow
Secondly, there was another great piece of dialogue in Mel Gibson’s otherwise fairly average movie, Blood Father, which I quoted from last time.
Mel’s character is giving a straight-talking pep talk to his runaway daughter who had been trying to coax some sympathy out of him as she told him of her failed suicide attempts. He reaches a crescendo:
“… you don’t wanna die. Cause you’re a seventeen-year-old kid and you got a lot to live for. Okay? You may not wanna wake up tomorrow, but the day after that might just be great. Might be the best f***ing day of your life. You know? You don’t wanna miss it, right?”
It struck me that that’s actually pretty good motivation when you’re in those horrible situations where all you want to do is curl up, hide away, blot the world out of your head; when things are too much to process, and thoughts of tomorrow are overwhelming because tomorrow means thinking about the unthinkable.
Think about the day after tomorrow. That may be great. That may be the best day of your life.
So, take a deep breath, get a good night’s sleep, and tomorrow put one foot in front of the other until you’ve got through it.
Perhaps the way to think of it is like this:
Worrying about tomorrow is fruitless. But hoping for the day after tomorrow gives you strength.
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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.)