Coming up to 100 days
My Allograft 2018/19 – 21. 5th May 2019
By Andy Burrows, 5 May 2019
Losing the dangly bits
It’s Day 87. That is, 87 days after my transplant, after Day Zero.
I’ve been out of hospital two whole months.
I have to admit, it feels like longer than that!
I’m still making progress, ticking off little checkpoints every so often. I’m on track, apparently, and the physicians are happy with the way I’m progressing so far. But it does feel slow.
I’ve been cut back to one check-up appointment per week in Southampton for the last four weeks.
And I’ve been eating and drinking fine since I last updated on this blog.
The only other things of any significance that have happened in the last month are that my Hickman Line was removed a couple of weeks ago, and my hair has started to reappear.
I’m actually just starting to need to shave again!
The removal of the Hickman line was slightly weird. (The Hickman line, if you don’t remember, is the tube that goes into my chest, under my skin and over my collar bone, into the valve just above my heart; for taking blood and delivering IV drugs. See this video if you missed me showing mine off when I first got it!)
The procedure was ok. It’s the third time in the last few years that I’ve had one of these things removed, and it’s not something I get nervous about, as it’s not painful or uncomfortable. In my case, the tube is normally well and truly bound underneath skin, and it takes a bit of ‘digging’ (with scalpels and other sharp implements) with a local anaesthetic, for about 45 minutes or so.
The weirdness comes from the fact that I had got used to it being there. I’d had tubes dangling from my chest for the last five months day and night, flushed and redressed once a week. Before that I’d had four months with a PICC line.
And now I’ve got no dangly tubes!
The problem with exercise
I have tried to start doing a bit more exercise, going on a few dog walks with Heidi.
This has resulted in more frustration than any feeling of progress, as I’ve ended up each time with severe aches in my limbs. It feels like I can’t do anything substantial without overdoing it.
So, I’ve had to be a little more careful. So I’ve tried to rest a few days in between each of these walks.
It’s not that I’m afraid of “overdoing it”. I believe (and I think there is scientific opinion behind this nowadays) that pushing past your current physical capacity is a good thing… so long as there is sufficient “recovery”. Overdoing rest is in many ways as bad as overdoing physical exercise.
As someone once said, “if it’s not hurting, it’s not working!”
So, it’s just frustrating because of how much recovery I need! It’s going to be such a slow road back to normality!
But I don’t let it get me down. I stop myself from getting depressed.
For one thing, no one is expecting me to have loads of strength and stamina for a long time. For another thing, I’m not particularly bothered at this stage what expectations people have.
Mainly, though, I ask myself, “what’s the big rush?” What good would it do me to be physically 100% when my weak immune system is going to restrict my movements for another 10 months or so anyway?
So, I’ll keep periodically pushing myself physically just so that I keep track of what my limits are.
Reducing the daily pills
I have a suspicion that I won’t start to make significant progress until my daily dose of cyclosporine has been significantly reduced.
Cyclosporine is the drug they have me taking twice a day to suppress my immune system in order to prevent GvHD (graft vs host disease).
But if I think about the other pills I have to take on a daily basis, most of them are linked to the cyclosporine in some way. For instance, I have to take magnesium oxide twice a day because cyclosporine impacts natural magnesium levels, and low magnesium is bad for you.
And all these drugs, especially cyclosporine, have side effects.
The nurses even say that a lot of patients report feeling much better once they’re off that. It doesn’t surprise me. And I’m not even bothering to go into all the other niggles and gripes, like flu-like body aches and exhaustion.
I’ve no idea how long that will take in my case. The doctors have mentioned in the last four appointments about starting to reduce the cyclosporine dose, but they haven’t done anything about it.
I’m currently on 130mg twice a day. I’ve heard a rumour that they reduce the dose in 10mg steps each week.
So, in theory that means it will take me 13 weeks, or 3 months, to get off most of my remaining medication.
Another reason for patience.
The 100-day review, and the next 100 days
The milestone before that is my first quarterly progress review. They call it my “100-day check-up”. It’s coming up in a couple of weeks.
That basically involves a bone marrow biopsy (I don’t like the idea of that being every 3 months, but oh well, it is what it is), a PET CT scan and a raft of extra blood tests. These basically check on all the different aspects of how engraftment of the new (donor) cells is going.
Aside from that, I don’t really know what milestones there are to look forward to. Probably just quarterly reviews, and apart from that just take it as it comes.
I have another suspicion, that things can be a little unpredictable, which is why the reduction in cyclosporine dose is gradual. I have a feeling that GvHD can be a problem as the dose reduces, and so it may be a case of decreasing and increasing the dose depending what symptoms there are and what the weekly blood tests show.
In that sense, the milestones are going to be quite vague and fairly spaced out, I think.
The importance of doing stuff
In the meantime, what do I spend my days doing?
Someone asked me the other day what a typical day looks like for me, and I laughed and said it’s pretty boring.
I didn’t mean that I find each day boring. It’s just boring to describe, in that there’s not much to it. And there isn’t much difference between each day, so public holidays and weekends tend to be quite similar to week days. If it weren’t for the rest of the family having work, school and college, I think I’d lose track!
Supercharged Finance is basically what I do each day (except Sundays), as if it’s my work. I write blog posts, write email newsletters, course content, video scripts, webinar scripts, engage in social media, do online marketing, and so on.
There is so much to do, and I’m the only one there is to do it. I love it.
But I do feel like if it weren’t for this project, I’d be going crazy.
Again, please don’t take from this that I’m bored and going crazy with boredom (though I do have the odd moment). I’m absolutely not. I feel like I don’t have enough time for everything I want to do with Supercharged Finance! I don’t need anything else to fill my time.
What I want to get across, for fellow transplant patients and their friends and family, is that if you’re in this kind of situation, you need a project. You need something to get you up in the morning and motivate you.
I know that I’m repeating what I said in a previous blog post. But seriously, if you don’t have something to work towards that is within your physical constraints while you can’t do your normal work, then you will struggle.
And it’s immensely rewarding, probably more than it would be even under normal circumstances.
I like to use it as an example of how all of us are capable of much more than we think. If I can start a blog, self-publish three books and build an online business while battling cancer, then what can you achieve?
What do you reckon?
And even as I say that, my thoughts are turning to my next book.
I think, given the fact that the intense and interesting period of this stem cell transplant has passed, it probably isn’t worth writing much more on this blog for now. I think it’s probably better to use that time on that book.
So, my parting questions for this time, are what you think I should write about, and whether you have any inspiration I can use for this potential book. If you have an opinion I’d love to hear it!
Thanks again for being interested in what I’m going through.
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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.)