Graeme's story
Graeme Clark, 34 from Edinburgh was diagnosed with acute myeloid leukaemia in late November 2017, around two weeks after he had started experiencing symptoms that weren’t normal for him.
Graeme, then 29, had been feeling more fatigued than usual, noticed he was developing red freckles on his arms and had bleeding gums.
On the day Graeme was diagnosed, he woke up with excruciating pain in his ankle after an injury at football and went to A&E at the Royal Infirmary of Edinburgh to get it checked. He had an appointment with his GP later that day to enquire about the rash, bruising and fatigue he was experiencing, and A&E staff sent him home to discuss these issues with his GP; proving how subtle the symptoms of leukaemia can be.
Following blood tests taken by his GP, Graeme received a call at 9.30pm that night, telling him to go immediately to the Western General Hospital in Edinburgh where his diagnosis was confirmed.
Graeme said:
“When the Western phoned me, they said I needed to go to the oncology ward and I knew what that word meant. My wife and I drove in, preparing ourselves for the news.
“The rash – called a petechial rash – was a result of not having enough platelets in my body to stop even tiny knocks from bruising my skin, because my blood was unable to clot. The doctor told me that you’re meant to have between 150,000 and 400,000 platelets per microliter of blood and I only had 12,000.
“Apart from the symptoms that prompted me to get checked, the worrying thing was I felt largely normal. I’d climbed a Munro the week before and had been on holiday with my in-laws. I now know that leukaemia can be a really rapid cancer, and it literally just crept up on me. Had I not visited the GP that day, I dread to think how many days I had left.”
Speaking about the impact of his sudden diagnosis, Graeme said:
“I was given platelet support that night, a bone marrow biopsy on the Monday morning to confirm the type of blood cancer I had, then chemotherapy started that same night.
“I had incredible doctors – I remember my consultant immediately spoke with words like cure and I took confidence from that.
“Of course, I have hard memories of my mum running in a panic past my hospital room to find me, days when I felt pretty horrendous from the treatments, and remember being told I’d be off work for a year which was really hard to take in.
“But I’m pretty positive in general, and I’m the guy that people tend to phone when something happens because I’m level headed in a crisis. I was more conscious of how it was going to affect my wife, my immediate family, in-laws, and those around me. But we sat down together, said out loud what was happening, and then I got my head down and did everything I could to make the treatment work as well as it could.”
Graeme underwent chemotherapy before being discharged to spend Christmas with his wife Nic and family. Before being discharged, he was introduced to a stem cell nurse who explained that tests on his blood and bone marrow showed that he would likely need a stem cell transplant to cure him, but that another session of chemotherapy was planned to keep the leukaemia at bay, until a suitable donor could be found.
Graeme said:
“I was told I had quite a long journey ahead of me. Chemotherapy was pretty hard and because I didn’t have a functioning immune system there were lots of side effects that I had to deal with, but I tried to keep myself strong by following all the advice. I had a brilliant network of support which undoubtedly helped me get through it.”
Results from Graeme’s bone marrow biopsy in the February, after a second round of chemotherapy, confirmed that he would need a stem cell transplant. He would also need to undergo a third round of chemotherapy and eight rounds of radiotherapy in preparation for the transplant.
With a stem cell transplant giving Graeme the best chance of cure, his brother Jamie came forward as a potential donor and tests incredibly showed he was a perfect match; as only around 1 in 4 people find a match in a family member.
The transplant – which involves replacing bone marrow with healthy cells - took place at the Beatson West of Scotland Cancer Centre on 12 April, almost six months after Graeme’s diagnosis, and 22 days later, he had a brand new immune system.
Since the transplant, liver issues caused by the donated stem cells attacking Graeme’s own body cells, needed to be managed by immunosuppression medication and steroids for almost two years - and he no longer has a functioning spleen due to the radiotherapy treatment, which he manages with a tablet a day.
He is monitored once a year, and this year he will be marking the five-year anniversary of his life changing transplant. He and brother Jamie mark it every year with a ‘blood brothers’ day.
Graeme said:
“I had six months of intensive treatment, and I would say it was around another 6 months before I felt physically quite good again. I think you only get past the psychological stuff after the three-to-four-year mark. Now I feel great, and I will feel phenomenal when I get to April and can say I am five years completely clear.
“I’m physically the strongest I’ve ever been, carrying on the discipline I had around exercising throughout my treatment and right now I feel mentally strong.
“I literally have no health issues, other than that daily pill to deal with the fact I’ve not got a functioning spleen.”
Speaking about his outlook on life, Graeme said:
“Me and my wife Nic have a ‘can do’ mentality. We went to New York when my treatment was over, and enjoyed some amazing holidays in 2019.
“The one thing I would say we’ve lost is our innocence. I always had it in my head we’d live well into our 80s with no issues. I was 29 when I was diagnosed, so we can’t think like that anymore and I suppose that’s the saddest thing. I would love for that not to have been robbed from us.
“But life is as it was before my diagnosis, we were a strong unit before and if anything it’s made us stronger.”
Graeme added:
“I’ll defend the NHS to the hilt. We’re so lucky to have the cancer treatment available to us, and the expertise of everyone from my GP to the consultants meant my leukaemia was diagnosed and swiftly treated.
“My advice to anyone concerned about a possible symptom is to make an appointment with your GP practice immediately. It doesn’t bear thinking about what could have happened if I’d not been diagnosed at that point. Go with your gut if you feel something is wrong. Don’t google it or sit and worry about it, put your trust in the professionals. Regretting doing nothing is so not worth it.”