‘I’m not in this alone anymore, there are now two of us now.’ – Mark’s Story

October 18, 2019
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When Mark was told he’d need a matching donor to save his life, he didn’t know he’d also find a friend. After years of anonymous letters, this year, Mark finally got to know the name of the person who saved his life.

My overriding feeling about our story relates to the moment when I physically received his stem cells. It took about ten minutes for the small bag of beige coloured liquid to travel down the tube and into my vein. It couldn’t have looked less dynamic if it tried.

I just remember thinking, when everyone had left the room… I’m not in this alone anymore, there are now two of us now.

I had my stem cell transplant in March 2017. By this time, I had been diagnosed for almost three years. It all started with a really bad back, which I initially thought was another squash injury. But the weeks passed, and it just got worse.

After several visits to the GP, an MRI scan, more delays and then a blood test, I finally got an answer. The GP rang me the evening of my blood test, which of course rang alarm bells. He said I had to report to Haematology at the hospital the following morning. I asked him if it was cancer and he said… ‘Yes’.

It is a strange moment. I live alone, but two of my dearest friends were with me that night and I remember being very calm when I told them. They were more upset than I was, and I realised that I would not only have to look after myself through this, but also my family and friends.

At the hospital, the consultant confirmed I had multiple myeloma and that it was incurable. You can’t help asking how long you have left, and the reply is always preceded by the fact that everyone is different, but I was told five years.

The search for a donor

I had had several courses of chemotherapy, radiotherapy, two operations on my spine and a stem cell transplant using my own stem cells - a sort of ‘switch off, switch on’ type reboot. After 18 months, the cancer had come back, and I was told a stem cell transplant was my only chance. So, from Christmas 2017, the hunt for a donor was on.

I have two sisters and a brother and the usual chance of finding a sibling match is 1 in 4, so I would be lying if I said I wasn’t hopeful. All three came back as no match (they always said I looked like the Milkman). At the time I was obviously disappointed, but looking back, if anything had gone wrong, they would have no doubt blamed themselves and I could not cope with that.

So, Anthony Nolan searched for an unrelated donor and, about a month later, the news came through that they had found me a 10 out of 10 match! All they could tell me at this stage (and for the next two years) was that he was British and male. Had I known then that he was 6’4” and in the RAF I would have been even more optimistic!

On 29 March 2017, his stem cells entered my hospital room and then my bloodstream, and from then on, I had a partner to help me get through this thing.

Nothing really happens for the first few days, but then my blood count graph began to show my white blood cells were coming back! I had a couple of set-backs but on the whole it all went according to plan and I was discharged half way through the fifth week.

My sister came down from Lancashire to look after me and I must admit no matter how independent I think I am, I could not have got through those first weeks without her help. I just felt like a limp rag most of the time.

An anonymous letter arrives

When I received the first letter I was over the moon. I had written to my donor too, but our letters had crossed as they have to be vetted by Anthony Nolan to make sure you don’t give any indication as to your identity.

His letter was a ’Get Well Soon’ one and his overriding message was ‘Carpe diem’. He called me ‘Chap’ and signed it ‘The Donor’ which I shortened to The Don and then Don. We then used ‘Chap’ and ‘Don’ in all our letters, waiting until the two-year anonymity period was up and we could finally learn each other’s identity.

I remember being amazed how active and full his life is with traveling, volunteering, and sports. I was also really touched that he read my letters to his workmates, so another 20 people are rooting for me.

In one of his letters he quoted Marcus Aurelius, which is a nickname I get called sometimes, but at the time I forgot he didn’t know my name. It couldn’t have been better timed - I struggled more with the mental side to this process than the physical, and the quote said: ’You have power over your mind, not outside events. Realise this and you will find strength’.

As the correspondence continued, I soon felt I was getting to know him. It was just really nice to report my progress to a person that cared what was going on and who had made it all possible.

Finding out his name

Finally, the two years post-transplant were over and we were allowed to make direct contact. Anthony Nolan sent me his details and I found out his name for the first time – Ben.

It’s weird but I was not far off with how I pictured Ben in my mind. The RAF never entered my head, but looking back at his letters he gave me enough clues. I suppose I’m no Miss Marple!

We have texted each other loads and I’m really enjoying finding out more about him as time goes on. We have planned to meet up as soon as his work schedule allows. I am both excited and a bit apprehensive, I just hope he likes me.

I can never express how grateful I am

Since the transplant, I’ve had a couple of relapses but thanks to Ben’s stem cells and some chemotherapy, the myeloma is under control. My immune system is now 100% Ben’s so that increases the odds of keeping it that way. I also now have his blood group! I keep expecting to turn straight but that hasn’t happened… yet!

Ben plays down what he did, but it is a real testament to his character that he went out of his way to firstly give a sample to get on the register and then to spend several hours hooked up to a machine as his cells were collected, and then ever since he has been an amazing support for me in his letters and now in texts and photos.

I can never express how grateful I am to him, and believe me I have tried, but hopefully we will become good mates as the years go on, and I am more grateful for that than anything.

If you or anyone you know is going through a stem cell transplant and would like more support, visit anthonynolan.org/patients

And if you want to read Ben’s side of the story, head to blogs.anthonynolan.org/ben.