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.

See also:

https://www.dkms.org.uk/en/register-now

 

 

5 Replies to “Joan McFarlane – My Pioneering Donor”

  1. What a lovely story and one that resonates with me. I had my transplant in 2015 and my donor means the absolute world to me, he is like my second son who also happens to be German. He is a part of me and a part of my family too. Thank you Joan and Simon for leading the way on this extraordinary journey that us transplant recipients/donors must tread. Xxx

  2. I really enjoy your blogs Simon. They are beautifully written, extremely informative and your sprinkles of self deprecatory humour always make me smile!

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