Author: Simon Bostic

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

 

 

Breathtaking Travel

Breathtaking Travel

I expect that if you were to ask anyone who knows me what I am most passionate about in life, even those who know me only moderately well would mention travel somewhere near the top of the list. The letter to God that I wrote as a young boy (below) marked the beginning of a life-long passion for foreign travel and modern languages.

Dear God I wish we could go round the world. Are men .. dun dun dun.. love from Simon Bostic are men

I think I wrote that note after my first trip abroad. We were a working-class family living in a tiny cottage in rural Hertfordshire and had suffered a series of highly-publicised family tragedies. My brother Andrew died, my life had been saved under extraordinary circumstances, and somewhere in the dark midst of all that, my father, Roger – normally a rock of silent support for my Mother – was diagnosed with lung cancer and underwent radiotherapy and massive surgery to remove the affected lobe of his lung. Up to now my Dad had worked as a painter and decorator, and latterly as a factory foreman but his health now forced him to take even lower paid jobs. My Mum had a job before my brother Andrew and I were born but  couldn’t work afterwards because she needed to look after me in the years following my transplant.

We had no money and holidays were limited to hunkering down behind a wind breaker on a blustery day every Summer on the beach at Walton-on-the-Naize! Mercifully then, a generous donor (a Maltese businessman I think – I wish I could remember) stepped in and offered to pay for us to go on holiday. So, off we went to Malta.

My first experience of foreign travel.

Here on this little rocky ex-British crown colony just off the coast of North Africa, as if by magic, the dreariness and drudgery of life and the emotional heaviness that had engulfed us seemed to lift as we stepped out of the plane onto the metal stairs. I remember the warm air which rushed against my face and the sense of relief it seemed to bring in its caressing embrace – like being wrapped in a warm towel. I remember so clearly the change in light: rays of sunlight and wafts of Mediterranean air pouring into our apartment on St Julian’s bay while the Cat Stevens song, “Morning has Broken” played loudly, my dad singing along in full-throated voice as he often did.  Firmly held in my memory too is my appreciation of the difference in temperature; not just of the air outside but also of our mood in general. Like the weather, we were altogether more temperate; warmer, lighter, breezier. Dare I even say, happier? I carry around a photo of my Mum and me posing on the docks – one of the few pictures I have of her when she looks happy and carefree and her brow isn’t creased and darkened by shadows of worry and fear. At home, it seemed we dare not be too happy for too long as we never knew what lay around the corner – as if being on high alert protected us from the threat of further hurt and disappointment. This state of high alert endures in me today and travel (even just the thought of it) remains one of its most powerful antidotes. Stepping out of airports in warm climates nowadays brings that same feeling of calm and wellbeing as for a moment, it’s as if I have escaped the realities of the world and of my life.

Not one of my best looks – I blame my Mother!

Physically too, there were discernible signs of change and improvement on this little island. My infected spots, annoying rashes and a big boil on my leg, little but annoying infections which could turn nasty at any moment and which plagued me often (and still do), just disappeared overnight. Of course salt water and sun play their part but perhaps there is also a link here to be made between the emotional and physical: I kid you not, when we landed back again in dreary, rainy old Britain they came right back, almost before my eyes.

So, it is no surprise then that, in spite of it being one of the most ill-advised career choices an immune-compromised person should make, I became a tour leader. I remember chatting away in Maltese to the cleaning ladies (who loved the fact I wanted to learn their language) and it became clear to everyone that I had a gift for languages. This gift led in due course to a first class degree in modern languages and was my passport to a career in travel. I started with an American company leading groups of 14-18 year old American high school children and their teachers around Europe and then for a leading adventure travel company leading small groups of up to 18 travellers all over Mexico and central America, East and West Africa. No sitting behind a desk at Lunn Poly for me – no. I needed to travel to far-flung and exotic parts of the world where there lived a “vastly increased variety of infectious microbes compared to Europe” – I quote one of my doctors who took care of me in hospital for a week after returning from Burkina Faso. And what an incredible experience it all was – I don’t regret a moment. Whereas before I had been struggling terribly with the depression of not knowing what I would do for a living and had been devastated at having countless ideas written off by my health issues compounded by a terrible lack of confidence, at selection days for tour leaders/managers, it seemed I just could not fail – I have that kind of personality, I suppose. As my Grandmother told me, I am just like my Mother, a born extrovert. It was meant to be and it was amazing and I enjoyed a 15 year long career in travel that I had hitherto only ever dreamed of.

Those days are behind me now as, due to failing health and fitness, I had to leave my last role as Head of Operations for a wonderful little company specialising in charity challenges.  But my life has been immeasurably enriched by the places I have been and the people I met: those who travelled with me as well as my colleagues and most importantly of course, the inhabitants of these lands both human and animal!

Looking into whatever the future holds for me can be daunting and scary but it would be bleak indeed without travel featuring prominently; I am not one for compromises and intend to continue far-flung travels as long as I can (although being too remote from decent medical facilities now is not really an option) and you would not believe the cost of the insurance. The sights and sounds of travel have always taken my breath away. Now, nothing is different – it’s just I am much more breathless in a different way and for different reasons! Despite being forced to traipsing around with a portable machine to help me oxygenate my blood, I insist that my travelling days are far from over.

I may no longer be a tour leader but on a recent trip to Paris, outside the Basilica of St Denis, I tried to recapture some of the magic of those good old days when I would stand in front of a group of nonchalant looking teenagers doing my best to keep them interested … See what you think.

What a Carry On….!

Coming soon: Breathtaking Travel ….  in Sicily

“I want her to be remembered”

“I want her to be remembered”

It is hard to believe that today, 27th July, 40 years have passed since my mother Elisabeth Bostic died, age 33, from a tragic and accidental overdose. One of my main objectives for this website is to tell her story. She was not just a devoted mother, wife and daughter. She was a forceful campaigner and fundraiser who persuaded doctors to take risks they may never have done otherwise and enlisted the help and support of the press and public to save her son.

Her campaigning led to the first ever register of volunteer bone marrow donors, which led to a donor being found for me, and the first ever bone marrow transplant from an unrelated donor. Shirley Nolan, another mother whose son, Anthony, would die without a transplant from an unrelated donor, rang my mother as soon as the news broke, and brought Anthony to London. That same panel of donors which had saved me became the enormous register of donors we know today as Anthony Nolan.

On this 40th anniversary I came across a newspaper interview with Shirley, given the week after my mother’s death, where she speaks of the courage and determination my mother inspired in her. It is a testament to the heroic, herculean strength that a mother will display in fighting for the lives of her children. Both their stories and the spirit of their endeavours live on in the charity and donor register that bears Anthony’s name.

Reading this article and remembering her legacy provides some solace for me today. I just haven’t the words to express how it was to lose her in this way, and at that time, or the effect this has had on me since. I am just so grateful that I did have her when I did and am able to connect with her through this story.

Original article is credited to Richard Shears in Adelaide and I think appeared in the Daily Mirror at the end of July 1978.

If any one person in the world understands the stresses that Elisabeth Bostic had to face before her tragic death it is Shirley Nolan.

Possibly even more than members of Mrs Bostic‘s immediate family, Mrs Nolan can comprehend the full depth of all the sorrows and tiredness that led to that last confused action of accidentally swallowing an overdose of drugs.

Because Mrs Nolan is a woman who was gone through the same experiences: the joy of giving birth to a son, swiftly followed by the heartache of being told that he was certain to die. And because she too had the willpower to fight on against immense odds, in the hope that her child’s life can be saved.

Mrs Bostic died in hospital on Thursday after being unconscious for two weeks. Her son Simon, the world’s first bone marrow transplant patient, had been taken ill with pneumonia and, said her husband, she was ‘so upset that she made a terrible mistake’.

Through their shared problems the two women met and became close, although they lived on opposite side of the world.

“In the battle to keep my own little boy alive Liz was my greatest ally” said Mrs Nolan at her home in Adelaide yesterday.

“I had wanted to end it all in the early days and it was Liz who kept me going.

“The last time I saw her, the very last word she said to me was ‘I don’t know how you keep going but don’t stop’.

“And now she’s dead. Why is life so cruel?”

Mrs Nolan, at 34 the same age as Mrs Bostic, spoke to me bravely about the sadness that surrounded her own life and that of Mrs Bostic, whose son had an operation in 1973 because a suitable donor was found.

GLIMMER OF HOPE

For Mrs Nolan the search for a donor for her seven-year-old Anthony goes on.

“I have lived through seven years of absolute hell,” she said. “Liz lost one little boy with the same problem, but when Simon had his operation she told me that the worst of her troubles were over.

“I cried for two hours when I heard she had died. And then I telephoned some close friends of hers in England to ask what had happened.

“I can still hardly believe that she has gone because I strongly believe that it is through her encouragement that I am here today.”

“Yes I’ve wanted to give up. I don’t expect anyone to fully comprehend the mental torment of having to care for a little boy who could just fade away at any moment. Even when I was having that traumatic telephone call to England to talk about Liz, Anthony started haemorrhaging, bleeding from the nose. At this very moment he’s alright. Internal bleeding could start again at any second.”

The two mothers first spoke after Mrs Nolan read about Simon Bostic‘s operation in 1973. The news gave her a glimmer of hope for Anthony who, in 1971, doctors had said was incurable.

“There is no point in keeping him alive,” Mrs Nolan remembers the doctors telling her and that night she and her husband drank a bottle of brandy between them and wept buckets.

When she heard of Simon‘s operation she telephoned Mrs Bostic. “She told me that she had watched one little boy, Andrew, die from the disease but she was confident that Simon was going to be alright.

“Her words were enough to take me to London where we met and began what was and still is a long hard struggle to find donors for helpless children like Anthony

“We fought hard together to raise funds for research and we spent many hours talking on the telephone when I was living with Anthony in the cottage in Kent. Last time we met was at the Mansion House where tributes were paid to Mrs Bostic and myself.

WILL TO LIVE

“On the way back to Charing Cross station where I was catching the train to Kent I clearly remember Liz chatting to me and saying:

‘Shirley it never ends, does it? Even though Simon had a successful operation I still wonder sometimes whether he will always be alright.’

“I knew that deep within our hearts we each felt strong sympathy for the other. At that very moment in the car as she spoke those words on the way to the station I realised that in spite of my worries, I wasn’t really alone.”

“And now that Liz is dead I am all alone again with my sick little boy and a hard fight ahead.”

“People will wonder whether I can go on like this not knowing where the future lies. Will it be a feature of happiness or grief?”

“Liz’s death has struck me badly but I must always be aware that my giving up is going to do nothing for Anthony. I started a fight for him and I must finish it.”

“Last December the doctors told me he had a week to live. It brought me down to a low ebb but I was determined not to give up, and then he had a miraculous recovery. He is living now on antibiotics and psychologically he is much better. At one stage he had given up the will to live, but he now goes across to the local primary school to play for half an hour with the children every day.”

Mrs Nolan will be flying to London in September for the official opening of the Anthony Nolan Laboratories in Westminster Hospital where the first national tissue register in the world has been set up. It was thanks mainly to Mrs Nolan that the £1,200 for the equipment was raised. She is working on the final stages of a book about life with Anthony entitled “A Kiss Through Glass”, and which she says will now have an additional section devoted to the life and death of Liz Bostic.

“I want her to be remembered” said Mrs Nolan “Someone who gave me the courage to fight on deserves a lasting memory.”

 

 

The Miracle of our NHS

The Miracle of our NHS

It is probably true that I would not be alive today if I had been born in almost any other country. It is most certainly true that I would not be alive today if it weren’t for the NHS.

In 1973, I was the first person in the world ever to survive a bone marrow (stem cell) transplant from an unrelated donor.

Last week I had the honour of giving a speech at All Party Parliamentary Group on Stem Cell Transplantation’s annual summer reception, held in the Terrace Pavilion of the Houses of parliament. The transcript of the speech and the video of it are below.

PictureThis APPG (to use the less verbally challenging and more time efficient acronym) exists to raise awareness of and to inform parliament about the need and importance of stem cell transplants to help save lives of people with blood cancer and haematopoetic disorders (i.e. diseases of the blood cells such as white or red blood cells or platelets.) In front of a friendly gathering of MPs, clinicians, medics, patients and their friends and relatives, it was an opportunity to tell not only my story but also the stories of both my mother and my brother – if it had not been for them, I would not have had my transplant.

The time was limited to three-and-a-half minutes so it is merely a brief introduction to this remarkable story of love, grit and the determination of a brave and courageous woman. My brother tragically died two days before he himself could have been the first to undergo the procedure – a match had been coincidentally found in Holland. It was too late – he had become too sick and was in terrible pain. The little golden-haired boy they referred to as being like an angel and too good for this world, died in his sleep listening to his favourite records of nursery rhymes.

His death would not be in vain. My mother started The Andrew Bostic Fund which quickly raised in excess of £10,000  (five times my family’s annual income back then) for research into immune deficiency disorders and to pay for the sterile units needed to be able to carry out risky procedures such as bone marrow transplants.

For those who prefer to read the transcript, it follows the clip below.


 

Thank you very much Prof Snowden for introducing me and also to Mark Tami MP for inviting me here today to such a wonderful gathering of friends and supporters of stem cell transplantation.

My story begins with my two-and-a-half year old brother Andrew who, in 1972 died from septicaemia caused by a rare, incurable immune disease. My parents were told they would lose me too as I had inherited the same condition. At 20 months, I was nearing death after 10 respiratory infections and numerous septic lesions.

My only hope was an incredibly rarely performed and risky procedure, known then as a bone marrow transplant and which we know today as a Stem Cell transplant.

However, even then there was little hope. I had no match within the family and in those days, nowhere to find an unrelated donor – no register or panel of donors waiting to be a match and save a life. And besides, no-one in the world had ever survived a bone marrow graft from an unrelated donor. So, a miracle was needed. In fact it would need a double miracle:

The miracle of finding a donor, and the miracle of surviving such an experimental procedure.

Such a double miracle would require miracle workers – heroes that need to be remembered.

First on my list of these to mention is my mother, Elisabeth Bostic.

After losing Andrew, my mother had tirelessly campaigned and fundraised for research and sterile units at Westminster Children’s Hospital where my brother and I were being treated. She was able to persuade Prof John Hobbs and his team to try and assemble a panel of unrelated donors.

But how to find them?

Amazingly my mother managed to attract the attention of the national media and a global search for a matching donor for me began.

The media sensation that developed led to thousands of people coming forward to have their blood taken to see if they could be a match and this formed the first ever donor panel of volunteers.

And in a miraculously short time a match was found, a young mother from Cambridge, Joan McFarlane, yet another miracle worker.

The overwhelmingly positive response of the general public astounded everyone and of course led to Shirley Nolan travelling all the way from Australia in the hope that her son Anthony, could benefit as I had.

Shirley came to meet my mother, found inspiration from her campaigning spirit, and in due course took my initial panel of volunteer unrelated donors and began building it to become the enormous register we have today. Sadly of course a donor was never found for Anthony – but the indomitable spirit of my mother and Shirley lives on today in the charity that bears his name.

My survival depended also on the miracle workers of the NHS, especially the pioneering team of medics at the Westminster Hospital under Profs John Hobbs and Joseph Humble who were negotiating hurdles and challenges that few others were prepared to take on at the time and encountering doubt and opposition on many fronts.

On Friday 13th April 1973 I received the donor stem cells. Against all the odds, the graft took and my body started producing healthy white blood cells. The impossible became possible.

It is true that due to the experimental nature of the procedure, the graft was too small to last a lifetime but I was saved from certain death, and the graft saw me through my childhood.

More importantly, I was living proof that it could be done, that volunteer donors wanted to help, that more lives could be saved …

The miracle workers of the NHS have saved my life on many occasions since, and without them I would not be standing here today.


This speech represents merely a fraction of what I want to say about my mother and Andrew. Yet since the speech, people have commented not only on how inspirational I am for still being alive at the grand old age of 47 but also on what a rallying cry it is for the NHS. Someone living with chronic illness in the USA messaged me on Instagram commenting on how lucky we are to have the NHS. Both the ITV and BBC programmes I was interviewed for this year as part of the NHS at 70 celebrations threw into great relief how much we all depend on this great organisation and which we all, to a greater or lesser degree, take for granted. These days, stem cell transplants are usually carried out with a probability of success in excess of 90%. To me this seems incredible. You will appreciate how shocked I was then to hear a consultant haematologist say that these days, this is just not good enough – so great are our expectations. We have come a long way indeed, yet we must take care not to overly burden the NHS with expectations that it just cannot meet in the current financial and political climate.

 

Pain, Pleasure, Procrastination… And then there’s Paris

Pain, Pleasure, Procrastination… And then there’s Paris

In the last 2 weeks, there has been pain (a lot – both emotional and physical), pleasure (a lot – mostly emotional and quelle surprise not much physical) and procrastination (a lot:  had a difficult essay to write for a course, not to mention a bad dose of blog-block to boot.) Taking my own advice in line with what I wrote a few posts ago, instead of running from it or trying to ignore it, I just allowed myself to experience the pain, allowing myself to “just be” with the powerful emotions and physical sensations. I didn’t judge them. I tried to do the cuddly stuff you are supposed to do, like be kind and compassionate to myself – a bloody hard job with my inner critical Cruella de Ville always lurking in the shadows. Buddhism teaches that pleasure too shouldn’t be judged or dwelt upon too much. Like pain, pleasure is impermanent and will  disappear or morph into something else (pain again?) So I enjoyed it but remained detached from its Siren call, and the risks of shipwreck on the rocks of disappointment. I hope you will also indulge my self-congratulation at the skill with which I was able to quietly observe and just allow myself to be with my procrastination…. It worked like a charm – I avoided writing that terrifying essay or thinking about my next blog for days.

In the end it was sheer time pressure that ripped me from my literary paralysis. Time had run out before we went off to Paris this morning and the pressure of not getting there – with all the associated hoo-hah of packing two oxygen concentrators (one for walking and one for sleeping), materials for changing wound dressings, stacks of medications … oh, and let’s not forget the clothes!

Sitting in the stalls at the Royal Opera for a change!

With chronic illness, it’s just a fact of life that there are plenty of natural opportunities for riding life’s emotional roller coaster and, in spite of all the tricks, tools and CBT techniques in the world, it’s the devil’s own job not to end up in the front carriage every time. On the one hand, I was excited about how much more I could do at the gym and could really feel my muscles again thanks to a new, smaller oxygen concentrator which delivers my magical elixir to me while I move around. I am constantly amazed at how kind people can be, especially the NHS physios who work with me (see clip). The sun shone. I had been to the park with friends and also to the theatre four times to see shows and operas. The rose in my garden was smelling like heaven and my wonderful cats and husband (or my marital life partner as I call Christopher much to his annoyance) are all the joy and love anyone could wish for (mostly)… What could go wrong? How could this high ever fade when these joys are around me constantly?

The curtain call at La Boheme

Well, two days later, when I say I really felt my muscles again, I mean I REALLY FELT MY MUSCLES! Never had my quads ached like this before. I had simply overdone it on squats – and they never were my favourite anyway! Added to this (and worse) was the recurrence of the long-standing pain caused by the open wound I have over my coccyx. This is a hangover from the huge operation I had last October and the pain has returned with more ferocity and fury than ever. The wound had almost healed and the pain much subsided, so its sudden return to its old ways plunged me into depths of fear and a sense of betrayal that I can’t even describe. Added to all this I still feel very raw about the state my lungs have got to and what this means for the future.

Yet I got up and still went to my course workshop for most of the weekend. The pain abated (with the help of very strong pain killers) and I carried on going to the gym and did my voluntary work. I stuck with it. At least I now had a great excuse for not doing anything else as I was back to just getting through each day. Blessing in disguise, eh? And once more, along came the trusted Phoenix and once more deposited me back on some kind of level ground. I regained some equilibrium. Still I hate the oxygen concentrator and the plastic tubing and how it makes my cheeks look really chubby. Mostly, when I have found myself at a very low physical or emotional ebb, somewhere in the gloom of depression and upset, I remember all the things I am looking forward to and how very lucky I am and how precious life is to me now. I have had to slow down bodily so much to see life’s beauty – but I do see it and sometimes – just sometimes – when my mind slows down enough, I appreciate it too.

Today is my 47th birthday and I find it hard to believe I made it here, especially given the last few years. People ask me how I carry on – I don’t know. Perhaps it’s all magic and miracles after all. I do know that whilst accepting and allowing, I do also try and remember the things I do love in my life and how lucky I am. Everything is always changing – “No man ever steps in the same river twice, for it’s not the same river and he’s not the same man”. Who knows, I may just catch myself off guard and write that darned essay.

Next week!

“However bad life may seem, there is always something you can do and succeed at. While there’s life, there is hope.” Stephen Hawking

What Goes Down Must Come Up

What Goes Down Must Come Up

There are only a few things about myself of which I can be truly certain: the first is that I am not in any way one of those people my first ever therapist referred to as a “level earther” – someone who lives their lives on a more or less even keel, with few ups and downs, even in the face of life’s vicissitudes. With me around, it’s likely to be a roller coaster of a ride, scaling dizzying heights and plunging to great depths with face-wrinkling corkscrew turns, unexpected stops, drops and loop-the-loops aplenty. The second is that you can rest assured that regardless of how much I get thrown around – no matter for how hard or for how long – I will cling on and for just about as long as it takes and probably cackle with laughter the whole way through.

It’s just always been like that with me. In a 20 minute dash from the womb to the world (evidently I was in no mood for hanging around waiting patiently to face the world that awaited), I shot down that channel inside the frenetic and intense rollercoaster that was my Mother so fast I almost plunged head first into the toilet bowl at home. Whether fleeing from the craziness of captivity inside her womb at the earliest opportunity or impatiently rushing out to take on a world that had a hell of a show ready for me – I arrived red faced and screaming, if the family myths are to be believed, surrounded I imagine by faces crumpled with worry and doubt as, now knowing I was Simon and not Kate, in their view my fate was sealed; I had a rare and lethal immune disease that was already killing my brother Andrew, still only 18 months old and which would almost certainly mean that I also would stand little chance of surviving into adolescence. It was gonna be a wild old ride ….

And the rest as they say, is history…

And I’m still here. Enjoy!

Just me -Unadulterated?

Just me -Unadulterated?

I couldn’t publish what I had originally written this week. It needs air and to be free to breathe a little before I send it out into the ether. Then, I was  uncertain what to write – which is crazy given everything I want to say. So instead, speaking whatever came into my head seemed like the next best thing to do. The clip below is me this morning not too long after I woke up. I wouldn’t say that it’s me at my best. However, it is me at my most unfiltered. Whatever it is, whatever I am in it and however I seem, it depicts a version of me coping with the sort of physical and emotional experiences that greet me some mornings, blessed as I am with a number of chronic and/or degenerative illnesses.

In a word, I didn’t ‘arf feel like s**t – not just physically but emotionally. By giving in and just allowing myself to feel the emotions, letting it all breathe (literally) for a while, I felt a lot better and after a short while, I found more strength to get on with the day. In bygone days, I would have smothered feelings like this and pushed them all back in by powering on and diving straight into “busyness” – but as I am physically incapable of that these days, I have no choice but to try it a different way now.

I woke up feeling like I’d been drugged, been out on the tiles all night and then fallen face down on those very same tiles, smacking my head in the process. As my days of being out on any kind of flooring are now just distant memories, the only simulacrum of past days is that I had taken a fair old whack of prescribed codeine yesterday for the severe pain in my backside caused by my very own stigmata. The story of my Action Man butt is from the most recent chapter of an entire saga I could call, “The Abominable Abdominals” and is luckily for another day. Suffice to say that this wound is the solitary opening in that entire region of my body, and caused by the major surgery I had in October 2017. It is smack bang on my coccyx causing more than a modicum of discomfort and what’s more, its constant oozing needs daily care and sterile wound dressings. In this way, I am like a little walking, talking volcano with not much walking, but a lotta talking: venting hot air and fiery liquid from the little geyser on my behind… (oh, please … get a grip!)

I woke up feeling very low. But despite rambling aimlessly and sounding as if I have lost most of my teeth, by the time I had finished “talking to you” – that is, after I felt I had made some kind of connection, albeit a very one-sided one – I did feel much better.

IMG_20180613_155942_780

I have felt pretty low this entire week and partly this is because it suddenly hit me how much I have aged internally during the last 5 years of chronic pelvic inflammation and sepsis which has devoured all my body’s resources, robbing my bones and my lungs of much needed nutrients and sustenance. Consequently, there are many people in their 70s and 80s who have better bones and lungs than me. I have even SHRUNK and lost 1cm in height – seriously. I mean, HELLO?? Talk about careless. I can’t even smell the roses in my own damn garden. These days, I am an even more sure fire certainty in an audition for Disney’s It’s A Small World!

What I mean to say is: no matter how low you may feel at the beginning of the day, it doesn’t mean that you will feel like that all day – just taking it minute by minute without judging can make it seem better – and often it actually then does get better.

I am now wri20180615_195857ting this from a gorgeous place on the shore of Bewl Water with a wonderful view out to the reservoir, breathing in fresh country air and watching owls fly by in the fading twilight. And I feel great. I feel frightened and have pain just like I did this morning but I made it here and it’s ok.

I also wish to tell anyone out there reading this, especially my fellow warriors who are suffering and are in physical or emotional pain and perhaps are trying to ignore it or push it back down, that sometimes it is best to let it go and let it be just as it is. The energy it takes to hold something back takes a greater toll than just letting a little of it out. On some days, showing great strength is to say to whatever foe it is that is hurting you, “you’re too much for me just now. I will try again tomorrow ….”

And tomorrow, you may find your foe is not quite the ogre it seemed and who knows, it may even have disappeared into the night …. And if not, you will be fortified to go once more into battle.

 

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow.” Mary-Anne Radmacher

Good night, fellow warriors all.

The Elixir of Life – Concentrated

The Elixir of Life – Concentrated

elixir_of_lifeIt’s my desire and ambition to be as real as I can be as I write about my experience in this blog. This means that sometimes, it ain’t gonna be pretty!  But then, chronic illness, pain, surgery, hospitals, wounds: none of it is especially pretty. Sometimes people only want to hear the inspiring and positive stuff, the success stories against an invisible foe, fought out on the battleground of your own body. But, there is no good without the bad, no day without night, no yin without the yang ( …you get it, I know!) There are victories to be had in this silent war, both mental and physical, when I feel I am winning and that my inner troops are strong, armed and ready. But I wonder perhaps if really, there is no winning and no losing. It’s just all a process (I am loathe to use the word, ‘journey’ lest my own eyes roll) where some days feel good and some days, not so much. With chronic diseases which also deteriorate over time (there he is again, my old nemesis Time), the good days seem to get fewer, the “not so much” days, become more frequent and in turn become the good days.  And then you really begin to learn what rubbish days look like. This seems like a good time to stop judging days.

Today is just one of those “not so much” days. Actually, the last few days have been a bit rubbish, both physically and mentally. On such days I try and give myself a break from sucking that old marrow too hard. I may try and lick a little if I can or imagine what a lot of marrow sucking I will do in the future. Mostly I try my best to allow things just to be, to ride the waves of uncertainty that my situation brings and patiently wait for the storms to pass. If I can, I try to avoid g20180523_141016etting trapped in the predictable whirlpools created by fear and depression. I may sit outside to be closer to trees, suck in the fresh air, stare at the clouds and the sky and actively listen to birdsong which I find immediately soothing. Many of my past travel adventures have featured as a key objective going in search of wildlife and nature’s splendour. Now, tottering about in my local urban park, witnessing the changing of the seasons, sitting surrounded by squirrels and listening to the birds brings a sense of escape and relief. For me, Nature is one of life’s great elixirs. Yet these days, to taste this requires much more effort as life’s most vital elixir, oxygen is no longer so readily available to me.

 

It was not my intention to introduce lung disease at the start of my blogging life, but it is the part of my general condition which causes me most difficulty on a day-to-day basis and is exceptionally limiting both in terms of mobility and I am afraid to say also, mortality. I have spent so long trying to hide it – from myself mostly. I hate this disease and I am ashamed of it (for what reason I am not sure). Denial has been a recipe for survival but one that has now ceased to be useful.

Technically, I have Chronic Obstructive Pulmonary Disease or COPD – an umbrella term for a number of different lung diseases and it normally affects much older folk than I. (I recently heard of a fellow sufferer who gives a more meaningful explanation of the acronym: Can Only Plan Daily. Need I say more?) COPD is a truly appalling disease. It’s like having a fist squeezing the top of your windpipe while you suck in air through a straw or having an extremely heavy animal sitting on your chest! On a bad day when I am struggling to find any breath, it is as if I am stuck inside the crater of a volcano searching for a way to escape, gasping at any traces of oxygen remaining amongst the unimaginable heat, rocks, magma and noxious gases. Even on a “not so much” day It renders me extremely breathless at the drop of a hat (literally, on some days – oh, like today, actually – I would barely be able to scoop my hat off the pavement, even if I were to venture onto the pavement at all on such a day). It forces me to take a well-deserved rest two-thirds of the way up the stairs in my own home, providing a welcome opportunity to look through the rear window at the trees and plants in the back gardens (and a little twitch through the blind at the neighbour’s place to see how they are progressing with their renovations – blimey, get ON with it).

My lung function is now at about 17% of the predicted function it should be for a man of my age and (diminutive but beautiful) height.  Why it has taken hold and progressed with such ferocity in my case is, like many aspects of this brutal disease, unknown. But in all likelihood, it is because it is just one of my “co-morbidities” – a term helpfully used in medicine to refer to the collection of life altering (and threatening) diseases someone has in addition to the one you may be talking about at the time. (It’s a jolly term, isn’t it? Gives me a warm sense of unity and harmony – I feel relieved that my original solo-morbidity is not so alone but instead has companions to depend on and feed off and keep it from the deep, dank wells of loneliness.) This original lonesome morbidity, the one I was born with, is another mouthful: Chronic Granulomatous Disease or CGD for short, the real underlying demon here. Insidious and underhand, this genetically inherited immune disease causes my bone marrow to produce faulty white cells, making them shoot blanks when it comes to fighting infections. Affecting 1 in 250,000 people, it is potentially lethal and its effects are variable, unpredictable and generally just nasty. It is the cause of most of my issues in one way or another. It is the serious and chronic inflammation inevitably caused as part of this gift from the universe to me of this gorgeous and extremely rare primary immune deficiency that is the likely explanation for the fast deterioration of my lung function in recent times.

Last Friday, following a batch of recent tests, I was advised that my lungs could no longer find the oxygen they need in nature – at least while walking. I would need a new elixir, oxygen concentrated from the air by a machine. So now, as a fashionable addition to my little-man-about-town look, whenever I am walking along the street the public at large has the privilege of seeing me with a tube of plastic hooked behind my ears and down across my cheeks to meet in two cute little nasal prongs which sit in my nostrils (and make grooves in my cheeks) giving me supplementary oxygen as I go. The oxygen comes from a portable machine which concentrates the oxygen from the air around us and sends it down through the tubes into my nose. I am sure people will not even notice. I don’t ever remember seeing anyone on oxygen in the street or out and about at the theatre or a concert or anything, so maybe I just didn’t even notice them myself. Or if people do notice, I am sure they will absolutely not be looking at me or at my nasal cannula (or awkwardly not looking) and thinking, “Oh my God – I wonder why that bloke has got a plastic tube up his nose” or “what’s the matter with him? He seems too young to be on oxygen” or worst of all, feeling sorry for me.

I have taken it out for a spin (it comes with its own little trolley) – and it wasn’t as bad as I thought it would be and I even towed it up a hill with a friend and her pooch.

IMG_20180604_124730_534I am determined that in spite of it all, I will go to the concert at the Barbican tonight, with my concentrator on its trolley. At least (and I alone can start a sentence like this when talking about my own misfortunes) – at least I will now not need to worry about having to justify to people why I am using the disabled loos. I have moved from the murky realms of invisible disability to disability. At least sometimes. And I can use my portable oxygen concentrator, weighing 4kgs or so, as a portable ersatz dumbbell and do a few bicep curls while on the go. See? Not so bad after all. That’s what I call making the most of it. What is it they say? Every silver lining has a cloud?

For more information about my life with CGD and my early Bone Marrow Transplant take a look here:

 

 

Time … that old b******d!

Time … that old b******d!

Well, the time may be now. But what is this thing called time? It rules our lives like an invisible, omnipotent god. It makes a more than regular appearance in our everyday language. It heals all wounds (… apparently. I’m still waiting … but that’s not for today.) It waits for no-one. You can be ahead or behind it. You can be in the nick of it, race against it and you can have it on your hands. It is our past, present and who the hell knows what time may mean for any of us in the future. When you are young, it seems there’s plenty of it ahead but then it starts to fly… Old Father Time’s tick-tock-tick seems for all the world to set a faster pace now than before. What we thought once was our friend becomes the arch-enemy we struggle to defy, subjugating ourselves helplessly to the inevitability of its passing.

There are days when I throw my hands in the air in desperation at the passing of time. Because that old bastard, Old Father Time, sucks. As the name of this blog suggests, I also suck. I suck out all the marrow of life. I really do – I try my best: past, present and future. I stick up my finger – ruefully – at my life’s seemingly endless bad plot lines (you couldn’t make this shit up, believe me) and try, in vain usually, to re-write the script (the author is a stubborn old … oh, never mind). I suck, I have sucked and I will continue to suck! But, let’s get real for a second here, sometimes I suck at sucking. Because as I suck, it sucks too. Time sucks. Time has sucked, does suck and will probably suck in the future too. As I am busy sucking out all the marrow of life, that bloody old bastard is doing the same thing to my life. To me. To my body – as if chewing and gnawing away at my carcass, at my very being, until my bare bones are tossed into the dirt stripped, exposed, unprotected. Such is the helplessness I feel at the mercy of the cruel, degenerative diseases which pursue me so relentlessly.

Both physically and mentally, it is painful, frightening and tiring. Tick-tock-tick-tock goes the Grandfather clock: time is vanishing before my very eyes. Die Zeit geht dahin. The worst is, no matter what I try, like Strauss’s Marschallin, I cannot seem to stop all the clocks.

Yet, I go on sucking – as hard as my lips and cheeks will allow.

The NHS Saved My Life. Oh…. AND I’m on the Telly!

The NHS Saved My Life. Oh…. AND I’m on the Telly!

Update: this blog is here…. Ta-da!

In the ITV Tonight programme about the NHS, be aware that the section on my story is very brief. Just 2 minutes in the middle of the programme, which promises to be very interesting and overwhelmingly positive about the NHS, featuring some incredible stories including Amanda Holden’s brush with death. I was really honoured to be asked to take part in this documentary as without this amazing institution, I would surely have died many times over.

They have included some lovely old clips of my Mum from around that time …. very nostalgic and emotional…

(very briefly!) (for under 2 minutes)

This blog is coming really soon!

Meanwhile, please tune into to ITV1 on 24th May 2018 at 730pm to see me interviewed for a programme called Tonight “The NHS Saved My Life” in which I talk  about my bone marrow transplant, the first successful one in the world from an unrelated donor.

http://www.radiotimes.com/tv-programme/e/gjy69n/tonight–the-nhs-saved-my-life—tonight/