My Allograft 2018-21 – 40. 26th September 2021
By Andy Burrows, 26 September 2021
I haven’t been in a shop for over three years. I’ve been avoiding people who might pass on any kind of infection while my immune system has been compromised.
My immune system first took a hit while I was undergoing chemotherapy in latter part of 2018, with the depletion of my neutrophil blood cells. Then my stem cell transplant wiped out all my infection-fighting blood cells in February 2019. I was then on immunosuppressant drugs to prevent the rejection of the blood cells growing from my newly donated stem cells – a condition called Graft vs Host Disease (GvHD).
Once I was off those drugs, the normal expectation would have been that my immune system (measured by my cd4 lymphocyte count) would recover within a few months. So in theory I should have been back to normal by the end of 2019, or early 2020.
But that cd4 count has only just reached the normal range. I phoned for blood test results 3 weeks ago, and was told the good news, and the implications: “you can stop all your infection precautions!” Those included boiling my drinking water and avoiding certain foods.
But the biggest precaution was the avoidance of people, particularly gatherings of random people in public places.
So, this is big news!
… although Covid-19 slightly complicates things, because my immune system is still not likely to be as strong as a normal person. And different doctors and nurses say different things. They say annoying things like, “you just have to be a bit careful” or “be sensible”. What does that mean?
We don’t even know whether my covid-19 vaccination has been effective.
I asked whether I should be wearing a mask, and was told that it actually doesn’t really help. “My mask protects you; your mask protects me.” So, in a place where people are not wearing masks, it wouldn’t really do me much good if I wear one. I’m told that if I’m worried it may be too much risk in a particular place, the best advice is to not to go to that place, because there isn’t much that can protect me…
… ok, there are ways of protecting myself, but they’re embarrassing things. Like I was told that if I went back to church, the doctors would be happier if I sat away from everyone else, near to an open window, wearing one of the FFP3 masks that they wear on the covid wards! Or apparently, I can ask people that I plan to meet if they’ll do a covid test beforehand.
I’m not really into making that much of a fuss! So if that’s what I’d have to do, I’d rather stay at home.
But I can’t deny it’s great news. Praise God that I can actually start to try and get back to normal.
But, if you detect a hesitancy in the way I talk about it, it’s because it feels complicated and weird.
It’s also, if I think about it, because arrival ‘back home’ doesn’t mean that everything is fine. A bit like Tom Hanks’ character in Castaway, returning home after years of being lost, after everyone had given up hope of ever finding him. Home wasn’t what it was. There was no slotting back into normality after so long.
It turns out there’s plenty of uncertainty even in ordinary life. Not just in a life with cancer. You can feel just as lost when it looks like you’re home.
There are no easy answers. For the physical illness, there was a straightforward choice – follow the doctors’ advice. For the aftermath of success, nothing seems straightforward.
For Tom Hanks’ character in Castaway, he learnt patient, positive, perseverance. “I know what I have to do now. I gotta keep breathing. Because the sun will rise tomorrow. And who knows what the tide may bring?”
He learnt to be patient, to keep breathing, to watch the tide every day. If the tide finally came along that allowed him to escape the island, then the tide would come along that would carry him into more certain waters in his life after the island.
If I’ve got through the illness, the treatment, the arduous recovery, the uncertainty, and finally after three years I’m ‘home’, then positive perseverance must also be the name of the game for the next phase.
And it’s literally a day-by-day thing.
I have to admit I’d lost motivation to write these blog posts. It had become a long and boring story – a bit like life.
But, since I set out to write a series that charted my experience with my allogeneic stem cell transplant, this feel like a good point to conclude it.
And there are a couple of reasons I reluctantly admitted it would be good to write this post.
Firstly, I wrote this partly for people who may go through a donor stem cell transplant in the future.
I know that everyone is different, and has different chances. I also know that these transplants are gruelling for everyone who goes through them.
What I want people to know is that my story shows that it is at least possible to come out the other side, even with the complications of infections and a slow immune reconstitution, and to be healthy and fit again. There is hope.
Secondly, for people in general, not only do I want to give you an insight into the hardships and trials of cancer, but I also want to leave you wondering. If I can go through all this, not only in the last three years, but the last 11 years, and still do the things I’ve done – write blogs, write books, release videos, build a business (which is the thing I need positive perseverance in now mainly!) – what can you do?
We spend a lot of our lives coasting. And yet, ironically, we seem to achieve more when we’re setting ourselves against adversity and hardship.
Thirdly, to have this positive perseverance I cannot neglect the spiritual dimension.
The sun doesn’t just rise. If the earth’s rotation and orbit around the sun is just the deterministic consequence of a Big Bang, and if our own existence is simply the product of billions of inexplicable random mutations and reactions… then we can have no confidence that the tide will bring anything good ever again.
In fact, more than that, if all that exists is merely matter in motion, then ‘good’ and ‘bad’ are meaningless concepts anyway! How can cancer be ‘bad’ and love, security and happiness be ‘good’? Surely, they’re just arbitrary labels – given to things that randomly happen – in a meaningless world. But we know deep down that they’re not.
The reason I have confidence that the sun will rise tomorrow, the reason I watch the tide, is because I believe in God, who created and who sustains all things.
And I can say, with the songwriter in the Bible,
I remain confident of this:
I will see the goodness of the LORD
in the land of the living.
And I know that, through faith in Jesus Christ, I am a child of God. My Father rules the universe! And His ultimate promise of an eternity of perfection is absolutely sure, whatever He may determine to bring along with the tides in the meantime.
Therefore, I continue to “take one step at a time, and keeping smiling.” I trust the Lord to provide for each step, each day. And I keep smiling, finding joy, expressing gratitude, for the myriad blessings He lays out along my path, along with the trials, and for the sure and certain promises for the future.
Wait for the LORD;
Be strong and take heart
and wait for the LORD. (Psalm 27:14)