Ten years ago, Lyn had a stem cell transplant to treat his myelodysplasia – which meant spending Christmas in hospital, separated from his family.
Here, he shares his entire incredible story – from the friends he’s met along the way, and the support he received from his wife Ann, to his first meeting with his donor Simon.
My MDS diagnosis
In 2003, (to use the technical term) I was feeling like crap.
My wife Ann told me to go to the doctor. I had some blood tests done, and my blood counts were down so they referred me to my local hospital; Withybush Hospital, Haverfordwest, in Pembrokeshire.
They ran lots of tests, including my first of many bone marrow biopsies, and said I had MDS (myelodysplasia), but they told us we should just watch and wait to see how it progressed.
We weren’t too sure and were concerned, so we found an MDS charity based in Kent and got in touch – and they advised us to write to Professor Mufti at King’s College Hospital in London, as he was a world-leading expert in MDS and the Head of Haematology. A couple of weeks later, we were invited to London for an appointment with the Prof, as he became known to us.
He took lots of blood tests and asked lots of questions. Within a short time I was told I had myelodysplasia refractory anaemia, and the team decided that I’d need a stem cell transplant in the near future to have a chance of life.
Finding my transplant match
And so in 2005 Professor Mufti turned to Anthony Nolan and asked them to try to find a matching stem cell donor for me.
It wasn’t long before they got back to me with the news – they’d found two matches! We couldn’t believe it.
They showed me a ginormous list of numbers, and explained how they reflected the match between us. One donor was available right away, but the other one was a slightly better match.
So we listened to all the advice, and agreed to wait for two weeks, until the donor returned from holiday, and go with the second donor.
My friend Sharon
In December 2005, after a couple of false alarms, we got a phone call from the hospital, saying they had a bed available – but they could only hold it for an hour, because the wards were so busy.
I said, ‘You realise we’re up in Pembrokeshire, right? It’ll take us more like four and a half to get down there!’
So, incredibly, they said they’d ask a student nurse to sit on the bed and save it for me.
Because the ward was so busy, I found myself in the bed next to a lady called Sharon, who was also going through a stem cell transplant. We got chatting, and we became good friends.
When Sharon and I found ourselves in the isolation rooms, Ann and Sharon’s husband would coordinate their visits – they’d pop in to visit us, one at a time, then switch over. It was a nice way of making sure we always had someone new to speak to. (The alternative was spending day after day watching Deal Or No Deal. I didn’t mind it so much at the time as it was the highlight of our day, but I just can’t watch that show any more!)
Sharon got out of the hospital before I did. I wasn’t envious, exactly – I was incredibly pleased for her – but I felt a bit sorry for myself, left behind alone.
Whenever I talked to her on the phone from home afterwards, she seemed to be getting better really quickly.
Then, suddenly her transplant stopped working and she declined quickly. Sharon eventually passed away in King’s College Hospital. I felt terrible, and had what I can only imagine was survivor’s guilt.
It took the wind out of me; I really couldn’t believe it. Her husband had to give me a good shake to snap me out of it. He said Sharon would have wanted me to get on with life and enjoy it.
My stem cell transplant Christmas
Professor Mufti prioritised my stem cell transplant. It took place on 15 December, 2005, at about 4pm.
It was a bit underwhelming when a small bag arrived; it looked like a blood transfusion, but it could change my life. I reacted to it at first and went all hot and blotchy. I had to be given Hydrocortisone and Piriton, but we got it done in the end! My best mate, Alan, had turned up to watch this momentous occasion with my wife – and to watch me go blotchy, I can’t tell you the jokes he made!
Ann had to go home on the 21st to be home for Christmas with our son Rhys. She was going to come back on the 27th, but the weather was terrible, so she didn’t return until the 3rd January.
And then on Christmas Day, my hair fell out!
I was in the hospital, taking my morning shower, when I realised that my ankles were underwater.
I glanced down – and I saw that my hair was in the plughole in clumps, clogging it up.
Later that day, two nurses came in with an electric razor to shave my head. They’d never done it before. They ended up cutting my hair into all kinds of shapes – we just laughed and laughed. It was a light-hearted moment in what was a very difficult time.
Some of my friends had sent me festive decorations, but it was hard to concentrate on any of it. I couldn’t sit through the Christmas movie, or anything like that.
My mouth was filled with ulcers and blood blisters; I couldn’t even talk to Ann on the phone. I had to write down what I wanted to say, and the nurses would pass my message on. And because of the chemo, I couldn’t taste anything – miserable!
Those were dark days. I was on morphine, to deal with the pain. The nights just went on forever.
It’s a very strange limbo you find yourself in after you’ve had a stem cell transplant, because it takes about two weeks to find its way to where it needs to go and start producing cells.
With every blood test you hope you will see a tiny blip upwards in the blood results. It was about a fortnight later when a nurse told me that instead of a reading of 0 for white cells, it was 0.1 or something. Progress…great! Maybe this will work after all!
But I always had the chance to see the kindness of the people around me. There was the nurse who came into my room at 3am while I was awake and miserable, and sat on the bed, and hugged me – just hugged me.
Then there was the woman who worked at Kings. She overheard Ann trying to find a nearby hotel in London that wasn’t too seedy or dangerous, and said she could stay at her own house for as long as she needed, as she usually took in junior doctors in training.
And, of course, there was my stem cell donor.
My wife Ann
When I was at my lowest in that hospital isolation room, I asked Ann,
‘If you had your time over, would you still marry me?’
She just told me, ‘Of course I would.’
On 3rd January, 2007, I was still recovering from the transplant, but I was back home. And my mate Alan came around, suggesting we go out together for a slap-up meal.
I was more than a little surprised when he stopped the car by a church, instead of a restaurant.
‘Hang on,’ he said, ‘I’m just going to go inside and light a candle for my nan. I always do it.’ Then, ‘Come with me, won’t you?’
‘Why do you want me to come inside?’ I asked.
‘It’s a big old church, and it’s dark,’ he told me. ‘Come on, keep me company.’
So I grumbled, but I got out with him, and went up to the church.
And when he opened the door, there was Ann, in her old wedding dress (still fitting perfectly), and she was holding out a suit jacket for me to wear, complete with flower.
We renewed our vows that afternoon, in front of all our family and our son Rhys. Although I never did get a chance to have that meal!
My donor Simon
On the second Christmas after my transplant, I sent an anonymous card to my donor through Anthony Nolan.
‘To my Donor, from your Recipient,’ it said.
When it got to the point that I would be unlikely to need any more cells from my donor, I was allowed to get in touch. Anthony Nolan asked Simon if he was prepared to be in contact. He said yes, and we exchanged letters. It was amazing to just have a name to relate to.
They often say that recipients take on some of their donor’s qualities. Well, when Simon sent me a letter back, I learnt that he was a Master Chef in the army, he was a keep-fit fanatic, and he’d taken his wife to Paris for Christmas.
Ann said, ‘So when do you think it’ll all start rubbing off on you, then?’
Simon and I kept in contact. He was just a sound guy – he’d actually gone on to donate stem cells to someone else three years later, and he’d ran three or four marathons for Anthony Nolan, as well as the Great North Run, afterwards.
In October 2010, we met. Simon gave me a call; he said he had leave of absence, and he offered to pop down and see me.
I’m not sure he completely understood how far away Pembrokeshire was, but he took a ferry from Belfast to Stranraer in West Scotland, then drove down. It must have taken seven or eight hours.
Well, my brother-in-law said, ‘We’ll take him to the pub,’ so we got him legless – just wrecked. He mentioned the great Welsh hospitality on Facebook afterwards!
I don’t see him all the time, but he came down for my 50th birthday a few years back. He flew in from holiday in Portugal. There’s a picture of us, stood together – he’s basically a blonde, tanned god, and beside him I look as if I’m about to go back into hospital!
I’ve thanked him a million times, but thanks doesn’t seem enough.
There was one thing we noticed. My little girl, Elly – who we didn’t even think we’d be able to have after the treatment – has blue eyes. So does Simon. The rest of our family have brown eyes.
I asked the consultant if it could be true, what some people were saying; that transplant recipients could pick up traits from their donors.
‘As far as we know, it shouldn’t have any effect…but really, who knows for certain?’
My family, my future
After being away from work for so long, I just couldn’t go back to my old job for Job Centre Plus, as they couldn’t wait any longer, and I was paid off.
I returned to part-time work in March 2008, and now I work for Pembrokeshire Cancer Support. I feel really lucky, and it’s great to be able to give something back.
I spent a lot of time after my transplant on Ward 10, at Withybush Hospital in Haverfordwest. The doctors and nurses are fantastic. It’s been a haven for so many cancer patients – but now it needs refurbishment and an upgrade so it can help more people in need.
My daughter Elly recently won first prize in a school contest to make a collage of the Pembrokeshire flag. As a family, we decided we wanted to seize this opportunity – to raffle the flag and raise vital funds for Ward 10.
If you’d like to help us make Ward 10 even better this Christmas, we’d be really grateful; you can donate to our JustGiving page here.
You can follow Elly’s Flag on Facebook.