A Stem Cell Transplant Cured My Sickle-Cell - And Rewrote my Future

10%

“What’s the worst that can happen?”

One of my best mates, Dylan, asked me after I told him about my potential stem-cell transplant.

If you’ve ever had any type of surgery or procedure, had someone fiddle with your gallbladder, tonsil, or even had a tooth pulled out, you’ll know there are forms to sign. Disclaimers and waivers. Basically, if something were to happen to you when you’re under the knife, so to speak, it’s at your own risk.

With a stem-cell transplant, there isn’t just one form… there’s an entire apparatus.

I went to see a psychologist, a nutritionist, specialist nurses (separate ones for my brother and I), and several specialist doctors over the course of several months, to make me fully aware of the magnitude of the task we were about to embark on - not to mention all the bodily function tests I took to see whether my body was physically capable of undergoing the procedure in the first place.

They were going to replace my immune-system with my brother’s.

There was one particular day, when my admittance to the hospital was drawing near, that I went in for one final talk going through all the risks and potential side-effects.

The possibility of developing vitiligo was the one that really stood out to me over the months we were discussing the procedure. It could happen during the transplant, in the following year, or even ten years down the line. One of my many faults is my vanity, and the prospect of my appearance changing disturbed me. And for some reason, vitiligo (for those with the condition) tends to appear on the face - often around the eyes and mouth.

It would be another psychological hurdle for me to jump over.

In theory, it’s a very easy trade off: vitiligo for a longer life. But to me, it was just another way my life was being turned upside-down.

Another risk was my body developing graft-versus-host disease (GvHD): where the body rejects the new Stem Cells. And this was a running theme of my entire treatment and recovery - a disease which in the worst cases causes organ dysfunctions. There are many disparate symptoms to GvHD on the benign end, such as rashes and diarrhoea, which happened often, and so I was constantly tested for the disease.

But it was the dangerous end that really struck home for me. Because as I went down that list of complications with the specialist doctor, we arrived at a section, which - as I looked at the piece of paper upside down - I could only make out the number 10% in a large bold font.

10%

This was the probability of death.

All surgeries and procedures have some probability of death, and I knew in an abstract way that this Stem Cell transplant also carried such a probability. But when I was told in a very matter-of-fact way, there in that office, is when it entirely struck me as a horrifying and very real danger I needed to be aware of.

I can’t say it changed my mind, but it gave me pause for thought. It was the first glimmer of my examining of what I was truly doing with my life.

I signed the paper, and a few days later, I was admitted.

Total Body Irradiation

There was a full itinerary presented to me when I arrived in my room. The medications I would be on, the various therapies, the Stem Cell infusion itself, and my release date - all down to the day.

And this thing needed to be on a strict timetable. It was an undertaking that first needed the sign off from the hospital, the local trust, and then a national body.

Fewer than ten people had undergone this transplant for Sickle-Cell in the UK. In France and America, the number was higher, but this was still a fairly new advancement in England.

I didn’t need to ask, but living in my own pressurised private room with an en-suite, being in the care of nurses and specialist doctors, and all the drugs and therapies, and everything else involved, would cost a hell of a lot of money.

Again, I was one of the lucky ones. The NHS paid for it all. And I also lived very close to the hospital in which I would undergo the procedure. A hospital that has an excellent Haematology department, and also happens to be the hospital I was born in.

The first week went by smoothly as I began on an antibody to prepare my body for the stem cells. I had phone calls, and visits with friends and family, so my spirits were high.

The second week is where the hard work began. I was transported to a different hospital for one dose of radiotherapy.

I remember the technicians asking me if I know what I’m there for - a standard way to make sure I’ve consented to what I’m doing. I said, radiotherapy.

Which part of your body? She replied.

All of it. I said.

She nodded, yes, Total Body Irradiation (TBI).

I think, out of everything, I was most unprepared for this.

The initial blast was painless, but the vomiting afterwards was horrendous. I managed to get a sick bowl just in time, and if it was just the once, I would have been grateful. But as the department was closing for the day, I had to be taken up to a ward upstairs to be taken care of, but they had no clue who I was. This was a hospital I’d never been to before. The plan was for me to go straight back to my original hospital after the radiotherapy. There were no beds for me, and so had to wait in the hallway, retching up the red-tinted bile in my stomach until it subsided.

I returned to my hospital in the night, lethargically slumping into my bed fully clothed with no energy to take them off, and slept.

Neutropenia

After destroying my bone marrow with Total Body Irradiation (TBI), I developed a very low white blood cell count, which they call Neutropenia.

I used to joke that this felt like your worst hangover. A hangover that would never end, and only got worse. But really, it felt like every inch of me was dying. Reading was impossible, even watching films or television felt like a chore. There was no will in me that could concentrate on anything. My mind was so scattered, nothing could hold my attention for any period of time, save for the thought of how dreadful I felt.

Picking up the phone to talk to family and friends was impossible, there was little I could articulate, and I bet I looked a dreadful sight.

I had cut all my hair off in psychological preparation for my transplant. I didn’t want to watch it fall out. I was actually quite happy being bald, I was told I could pull it off - but maybe that was just my friends being kind.

But my hair had grown back too quickly from the time I cut it to the time of my radiotherapy. There were a good few inches on there, and as I went to brush it one day, a cloud of my hair drifted down into my sink, as though my brush were a razor.

It was funny and irritating more than anything else - it made a hell of a mess.

But the unpleasantry intensified.

In the process of the TBI, my tastebuds were burnt off my tongue.

I’m a big foodie. It’s very much a comfort for me, but that too was taken. I could not taste much at all, and what I could taste, tasted terrible. Meats were especially foul. Fruits, not so bad.

And it was in this dreary, tasteless, hairless malaise, that my thoughts wondered into considering the path of my life. My sickly childhood, my treatments, my estrangement from my father, my time at university, coming out as gay, and what has dominated my adulthood: my pursuit of a career in the arts.

I think in deciding not to pursue a practical art career, I nullified much of the passion in me, as well as the nullifying the fear of failing. And instead, I devoted all of that mental and physical energy to chasing a career that would put me on stable footing, and allow me to live the life I wanted. And after losing that job I had worked so hard for, I wondered, was that energy well used?

What did I have to show for it?

I hadn’t made or written anything since leaving university, and it was becoming painfully apparent that I was losing my grip on what made me want to study art in the first place. Because it didn’t stem from me wanting to work in a gallery, not all those years ago in secondary school. I wanted to make things. I wanted to make art.

And as I saw my friends gather steam with their art projects, developing their practices, exhibiting in galleries and building online communities and shops, I felt a sense of being left behind. And ultimately a sense of unfairness. This was not where I was supposed to be. And yet, I didn’t regret any choice I’d made up to that point. I believed I would make the same choices again given the chance.

Because there was a story inside me. There was art that I’d suppressed for the sake of getting the dream job, and becoming the adult that I had always aspired to become. The one I owed to my family.

But there was more I owed to myself.

And as I lay there, my mind scattered and unbothered by anything that had since felt important to me, the story came into focus. A single thought that shone through.

A street away from my house, there is a common.

A very usual, mundane common. Of the type found all over London - all over the country. But which drew my desire and admiration like no other artistic muse had done for me before.

And so, I started writing. The contents of which came from a drugged-up and beleaguered mind, and made very little sense whatsoever; but the idea gathered into something of a north star, which gave me a glimmer of the spirit that once fuelled me, and which eventually became the Themes on The Commonside: a fiction about belonging and arguing for your inherent stake in society when people would tell you otherwise.

The Cure

I left the hospital at the tail-end of 2024, a few weeks after my stem cell infusion which itself had only lasted for twenty minutes or so.

A very lovely nurse stayed with me as the cells entered my veins.

I had imagined some kind of sensation. Either physical or psychological. This disease that had crippled me in childhood was being flushed out of me. But I think its because of all the time I’ve ever spent in hospitals, that it felt terribly ordinary.

I was being transformed, but I was much the same.

I had successfully underwent the treatment, and was now on a cocktail of drugs to keep my immune-system in check, and aid the donor’s stem cells in grafting to their new host (me). I was well enough to go home, but whether it would work was yet to be seen.

The constant lethargy left me in a daze. But I was in a prolonged period of isolation, so couldn’t see anyone beyond my immediate household. And as we were headed into winter, and my family were catching colds, I had to still keep something of a distance.

Some people don’t do well in isolation much at all, but I think it was exactly what I needed. Not just in that period, but in the course of my life, it was a perfect time of imposed self-reflection. I began writing like I’d never before. Ideas for art, music, a book, and a very niche genre which had caught my attention, called Mannerpunk.

But the self-reflection hadn’t just helped me to realise an entirely new artistic project from the disparate ideas that had haunted me for years; it had given me much needed perspective on how I wanted to live the rest of my life.

I discovered. Or should I say, rediscovered, that I want to create. Not just that I want to, but that I need to. That I must.

Working in a gallery had become the sum of my ambition.

I convinced myself that I could be perfectly content making other people’s dreams come true. More than content, I had tied myself into nots convincing myself that it was actually my dream.

It took over me so completely, that I didn’t know who I would be without it. It became my personality. The one who is, or was about to work in a gallery. It demanded everything from me, and all else would be secondary. My own art was not important.

I’d somehow become the supporting character in my own life.

But in the depths of my stem cell transplant, as everything once important to my adulthood dissipated, my art remained. It resurfaced.

It’s quite strange, but two years ago, I would’ve been proud to tell you I don’t have one single regret in life. And I would’ve believed it.

And I was all the worse for it.

My stem cell transplant, in the end, cured me. It cured me of my final pretension: that my art didn’t have the ability to fulfil me in the way I thought a career could.

It cured me; and along the way ridded me of Sickle-Cell Anaemia, I’m told, once and for all.