Tag: bone marrow transplant

Joan McFarlane – My Pioneering Donor

Joan McFarlane – My Pioneering Donor

Joan McFarlane with me shortly after the transplant. The chemo used to displace some of my own immune system had already taken much of my hair

My life has been blessed by the fortitude and selflessness of brave women. I have written and spoken recently about my mother and the work she did to raise money and awareness for bone marrow (stem cell) transplantation during the earliest stages of its development. The early 70’s was “the Jurassic period” in bone marrow transplantation, when brave pioneers forged ahead to develop new techniques and technology to cure children with inherited primary immune disease. It was a period of experimentation and one of those experiments was my transplant which miraculously and against all the odds, I survived.

That experiment would not have happened without Joan McFarlane who died a few weeks ago. As I wrote in her “Other Lives” obituary (The Guardian 28 October 2018) she heard about my plight and didn’t think twice about being tested to see if she was the rare match I needed. On discovering she was that person, she unhesitatingly and selflessly underwent what was then a fairly painful procedure involving a general anaesthetic, very big needles into the bones, lots of bruising and a couple of days in hospital* – just so that some of her bone marrow could be transplanted into my blood.

First my own immune system had to be killed off with chemotherapy to make way for Joan’s – a technique known as displacement. Literally, you dispatch your “assigned” immune system and in its place take on your donor’s. Theirs becomes yours, part of them becomes part of you.

The transplant took place on Friday 13 April 1973, and soon Joan’s stem cells were finding their way from her bone marrow into mine via my blood stream, where they would start producing the healthy white cells I needed to fight and kill infection, taking over from my own faulty cells. I was now part-Joan.

It is now known, partly due to the learning from my own transplant, that 100% displacement of the recipient’s own immune system is required in order to effect a lifetime cure. In my case just 12% of my immune system was killed off – the exact amount was almost guesswork in those early days. Joan’s cells would remain circulating in me for only six more years.

The impact of a transplant on both parties can be quite emotionally and psychologically significant and give rise to quite a profound sense of connection which is very hard to describe. This was illustrated by a comment I heard recently from a stem cell transplant recipient as she semi-jokingly referred to the time she had her transplant as “the day I became George” as if to tell me she had become partly merged with her donor now.

I am explaining this in an effort to convey something of the unusual connection some people feel having exchanged one of their 12 main body systems with that of a stranger or at having donated part of themselves to someone else. There is something vaguely bizarre about part of you living and existing in someone else or vice versa. There are anecdotal stories of recipients who make contact with their donors some time after their procedures and find they have developed new traits and skills or have similar thought processes which it turns out their donors also share. Who knows what the unexpected consequences may be? Sometimes I almost think that having the flesh and blood of someone else now functioning as part of you may well bring about unexpected changes and cause you to take on unexpected aspects of that person be they physical, mental and/or spiritual. There is much we do not yet know.

But of course, there are limits. It is with a wry and affectionate smile that I remember my dear, long-suffering old Nanny who brought me up from age 11, pondering the potential far reaching effects of me being “part-Joan.” When I finally revealed to her age 18 that I was gay she said, “you don’t think it is because you had Joan’s bone marrow do you?!” I can’t quite remember how I pointed out that being a gay man probably had little to do with having more or less female chromosomes but we both laughed about it in the end! In a recent conversation with Joan’s daughter we discovered that Joan and I shared a mutual obsession with tennis, and Strictly Come Dancing! The latter I am entirely happy to blame on Joan!

Sadly, one day when I was seven, Joan’s cells could no longer be traced in samples of my blood. Yet, I still wonder today if my seemingly miraculous ability to just keep on surviving is due somehow to the fact that somewhere lurking deep within my being is a tiny part of Joan which protects me – and it serves a worthwhile purpose for me to believe that on some level her energy remains within me, spurring me on to continue living the life she gave back to me.

Once into my teenage years, other dramas were playing out within my family and we lost contact with Joan until her daughter Dawn got in touch with me soon after Joan was diagnosed with the Leukemia that was to claim her life.  Unfortunately, Joan was too ill to meet me, but I was grateful to be able to say goodbye at her funeral, and have the chance to meet her lovely and loving family.

Joan’s memory and what she did for me will remain with me forever. A humble and unassuming lady, she shied away from the media attention that cropped up now and again over the years – she always maintained she had “done nothing special” and only “did what anyone else would have done: to save a little boy.” Well, I beg to differ. What she did was special indeed not just for me but for the thousands and thousands of future transplant recipients of unrelated bone marrow that took place following her pioneering donation to me. What she did allowed me to escape from a near certain death and find refuge for a few more years until bigger and better drugs were created to keep me alive until today. Without her, I would almost certainly have died. For this, there can never be sufficient words to describe the connection I feel with her.  I will think of Joan every finals day at Wimbledon and she will remain part of me forever.

*These days, for most people it is much easier to donate and is no more painful than giving blood.

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The time is now

The time is now

I am not sure why it has taken me so long to get down to writing this first sentence. I have always wanted to get the most out of life that I can, in whatever way I can, while I can. I have been threatening to start a blog for years but I always put it off it as a project for “the future” somehow maintaining the illusion that I had endless time ahead of me yet. But it seems time is in short supply now, perhaps more for me than for most. The time to write is now.

I wanted my future to be longer. I didn’t want to write out of a sense of urgency, a slave to life’s unrelenting frogmarch. For me, it was important to start writing before the opera of my life (or should that be soap opera?) reached the final act. There was so much to say. I needed Five Acts – the show must go on, and on, and on! Yet here I am, the curtain is about to rise on the final act, that proverbial lady with an elevated BMI is warming up to warble. The orchestra and the stagehands are already on overtime, the lights are overheating and extinguishing themselves one by one with a little puff. The curtain must come down sometime and of course, the show cannot go on forever. The time to write is now.

I know less about my future now than I ever did. There is little that medical science has left for me now: curative treatments are non-existent and even standard treatments have to be administered conservatively to prolong their efficacy. What I do know is that the time to write is NOW.

Yet even these jarring revelations about my deteriorating health may still not have been enough to kick-start the process but for several other recent events all of which together sounded like the universe whispering in my ear, “Do it. Do it now. The time to write is now”.

A few weeks ago, I was interviewed for two programmes commissioned for ITV and the BBC, both celebrating the 70th anniversary of the NHS through personal stories. In 1973, I became the first person ever to survive a bone marrow transplant from an unrelated donor. The transplant was pioneering and made medical history. The breakthrough would never have happened without my mother and her battle to find a cure for the primary immune deficiency I was born with and which had just killed my brother at age two and a half. The search for a donor and my miraculous survival was followed by thousands across the world thanks to blanket coverage by the UK media at the time. Being asked to take part in these programmes so many years later made me think that there might still be some interest in the story and about what has happened since.

My transplant success was the catalyst which led Shirley Nolan to start her search for a donor for her son Anthony, building on the work of my mother and ultimately leading to the establishment of the donor register which now bears his name. The power of social media was brought home to me when Anthony Nolan recently shared my Instagram post about the 45th anniversary of my transplant on their own feed. As a result, people commented online that my story was an inspiration to them and it gave them hope for their children who are having or have had transplants. I got more than one hundred likes in response to a Facebook post featuring a picture of me as a toddler with my donor. “Time to start writing #doitnow” wrote a very good friend to me that same day.

A similar message came from an ex-colleague I had not heard from in years who had been very poorly lately. She had followed my recent trip to Australia and New Zealand on Facebook from her sick bed. She touched me deeply by telling me, “you were a bit of an inspiration from afar” knowing as she did what it had taken me to get there following my most recent bout of major illness and surgery.

And finally, in the same week I was contacted out of the blue, also on Facebook, by a good friend of my mother from years ago, who worked with her and supported her throughout the time my brother and I were so sick. I am finding it very cathartic to reconnect with people who knew my mother and have first-hand accounts of what happened to me during those early years. It is part of my own process of making my peace with some of the events that have changed the course of my life.

So, universe, you tell me it is time to get writing. But it is my show and I say it’s all about quality not quantity. And WOW, what an amazing show it has been. No, wait: what an amazing show it still is, even if it has been – and still is – a bit of a melodrama at times: colourful and exciting, inconsolably sad and hysterically funny, unpredictable in the extreme, scarily and achingly painful, frightening and overwhelming. Most crucially (schmaltzy moment coming), I am lucky that my life’s script has contained an abundance of joy, love, friendship and laughter. These are my Four Elements, through which grief, pain, illness and death are somehow transformed into a determination to defy expectations, to survive against the odds, smile in the face of adversity and make this show run.
I don’t know how long the curtain calls will last, or where this all will lead – I know there is much to do; there are places yet to be travelled, people to meet and learn from, operas and shows to see. There’s a blog to write. Perhaps you may join me in making the most of it all and sucking out all the marrow of every last bit of life. There is no time to lose. The time is now….