Geraldine Hill

At the tail end of 2019, my GP ran various tests because I’d been run down for a few months and prone to earache. That’s all. Of the usual various treatments, nothing worked. He’s an excellent GP and obviously suspected that something more was going on, so he referred me to The Churchill, an MDS Centre of Excellence.

Very soon after, early in March 2020, I was diagnosed as having MDS with excess blasts (intermediate risk). What on earth was that? I had no idea what the illness was, I’d never heard of it and I certainly didn’t know it could be fatal.

Later that same March, the UK went into Covid-19 lockdown and my partner and I lost all our work; we have our own business working in film and business development, mostly in the performing arts, and of course that all closed overnight. It was like falling off a cliff so high that it afforded enough time to see the view: no work, no income, a scary pandemic on its way (already here?), and a mysterious illness (already here!) that could strike hard at any time.

We sorted the practical issue of income fairly swiftly, and we could isolate from Covid – and thus for MDS – quite easily as we’d worked from home for decades. Thank goodness we had dedicated outside space, effective broadband and online grocery deliveries.

This is when I first met MDS UK. I was hungry for information and my consultants, specialist nurses and haematologists were both fantastic sources and incredibly supportive. I also spoke with Macmillan and Maggie’s, both of which provided excellent practical advice. But MDS UK gave information as well as access to other patients, and their perspectives and experiences as shared in zoom meetings were and remain both insightful and helpful. I remember my first zoom meeting with them: I could barely talk, and some of the time cried tears that hadn’t come before.

Everyone’s input combined to paint a far clearer picture of what we were facing. And along with more clarity, my strength and sense of humour returned – which is just as well, because I became ill at the end of 2020, severely neutropenic and with a serious abscess which had to be fixed before going any further. So now I was admitted as an emergency with neutropenia and/or neutropenic sepsis on a seeming loop, each time treated with strong antibiotics. I was also administered Azacitidine along the way, but that didn’t help me. So I had to wait until I was well enough to undergo a 5-week admission for CPX before truly getting on the path to transplant. Despite the strength of the chemo, I fared pretty well on CPX and came out the other side with a good summer ahead of me before Day Zero: stem cell transplant on 1 September 2021.

And all went well! My admission time was great, the people terrific, the food good, the Wi-Fi strong (I didn’t feel like reading, which is weird as I’m a voracious reader, but I caught up on a lot of films). I honestly felt fantastic – just a bit tired. I was discharged after five weeks and a couple of biopsies over the following months showed me as having an increasing percentage of donor cells. All was positive… I even helped cook Christmas dinner.

But that all changed. In March 2022 I started to feel weak. Come April, I went in for routine blood tests and obs but didn’t make it home for eight months: multiple, unidentified infections were crashing my system. I was given a DLI (a Donor Lymphocyte Infusion) but was told it would take 6-8 weeks to work – if at all.

I went from bad to worse. My partner was told I was suffering from a sudden, aggressive illness and on 4 June I was moved to Sobell House Hospice for palliative care. There was, apparently, nothing more that could be done, and my partner and my mum were told I had just a couple of days to live (I was told, too, but it didn’t really register).

I know that I had the very best of medical care, and I know that I was surrounded by love and prayers of all kinds, but without the photos and videos of visits, and the letters and cards that I look at still from so many family and friends from around the world, I’m not sure what I’d remember now of that time… Drugs and sleeping – a lot of sleeping – mean that I missed a lot. However, the physical mementoes I keep and revisit are not only beautifully poignant, they also help with my memory recovery.

But I do remember my hospice wedding! After 24 years together, it was co-organised very quickly by my now-husband, Neil, along with my Sobell nurses and a delightful celebrant. With flowers and even champagne supplied, I was wheeled in my bed out into the sun in a gorgeous rose garden, and there we tied the knot.

The period in Sobell House was and remains a kind of comfortable blur for me, not frightening at all, though apparently I did complain of pain. Of course my mum suffered horribly (we lost my dad some years ago and my brother lives in the Netherlands). And for Neil, 2021 and 2022 were a complete nightmare. He was with me 24 hours of every day, keeping me safe, keeping people advised of my progress, scheduling visits, working with medics and recording everything that happened along the way. So it was fitting that he’s the one who saw first the miraculous turn in my condition…

Because I got better. Just about eight weeks to the day of having had the DLI, I started to improve. Come July I was moved to Rush Court care home in Wallingford, and on my brother’s birthday, 4 November, I was home.

My last couple of biopsies have shown 100% donor cells but I’m still being monitored closely and continuously by my wonderful Churchill team. I do need ongoing physiotherapy to regain all the strength and stamina I lost, and I do have chronic GvHD of the skin, which is being treated by steroids and ECP (look it up: it’s bonkers!). But I continue to improve and I remain extremely well.

And the mad thing is that I’ve become an object of hope, validation – or something – to every single clinician I have met with since. I’ve been dubbed Mrs Remarkable, Mrs Miracle, The Comeback Kid, Unbelievable, Amazing, and much more besides. Going to clinic now is such a happy place to be! I feel blessed, and very very lucky…

If I sound upbeat, it’s because I am. It was an easy decision to choose to have the stem cell transplant even though the odds of success, and thus of living, were 55:45. It was a successful transplant, easily undertaken. It’s hard that I became so ill with infections afterwards and so close to death, but the infections were brilliantly treated and I’m now 100% on a clear road forward. If you’re facing a similar situation, all I can advise is that you trust in your specialists and in the process.

Things I’ll always remember

*The kindness of strangers.

*The dedication of the brilliant doctors and nurses at The Churchill and beyond who show such relentless scientific rigour and human empathy. I can’t praise them enough.

*The selfless donation of his stem cells by a 20-year old Polish man. Sufficient time has now elapsed in my recovery that I can write anonymously to thank him, via the Anthony Nolan organisation.

*The love, prayers and support of friends and family – it’s been truly humbling and I’m still in the process of thanking them.

And the biggest take-away of all: that I must do something to repay, in some way, this enormous gift I’ve been given.

MDS – my story of a successful stem cell transplant, an illness, and a ‘miraculous’ recovery

Thanks to the brilliant team at Oxford’s Churchill Hospital, I celebrated the second anniversary of my stem cell transplant on 1 September 2023. I’m in remission now, but it has not been plain sailing…

Things I’ll always remember

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