After being diagnosed with essential thrombocythemia (ET), Colin’s blood disorder developed into myelofibrosis, a rare type of bone cancer. Here, he talks about his two stem cell transplants and the incredible support from his family.
Would you mind telling us about when you were first diagnosed?
In May 1980 I had a serious road traffic accident and had to have my spleen removed. After, my platelet count started to rise. I was informed that this was normal and over a period of time other parts of my body would take over the function of my spleen, and my platelet count would return to normal.
However, this didn’t happen. I was referred to the haematology department at the Glasgow Royal Infirmary, and after numerous tests I was diagnosed with essential thrombocythemia (ET), a blood disorder. I was only 20 and to be honest, it didn’t really concern me. In fact, I didn’t even know it was a form of chronic blood cancer.
In the following 30 years I was prescribed various medications for treating ET. I used to joke that I rattled with the amount of tablets I had to take! My health didn’t really suffer during this period, aside from a few side effects. A bone marrow transplant (as it was called in the early days) was also mentioned as a potential cure but because of my good health, and the fact that my sister wasn’t a match, it was deemed too risky.
At the beginning of 2012 my health began to deteriorate. I became very tired and suffered painful mouth ulcers. At my next hospital appointment my consultants informed me that my blood disorder had developed into myelofibrosis, a rare type of bone marrow cancer. A stem cell transplant was now the only potential cure and for this to occur, a donor would be required.
Do you remember when you first heard that you had a transplant match? How did that make you feel?
When I was diagnosed with myelofibrosis I was referred to the Beatson Cancer Hospital in Glasgow.
In January 2013, after many discussions between my consultant team, I was informed that a stem cell transplant was the best option for me and that a search for a donor had begun. This was a long appointment with a lot of information about stem cell transplants. Fiona and I were shell-shocked when we come out of this consultation, but I agree 100% that I had to be informed about not only the good points but also all the potential bad points of a transplant.
I was told at my next appointment that a potential donor had been found. The donor was a 9/10 match, but it was still early stages as both the donor and I would have to go through many medical tests before a transplant could take place.
How did it feel to have the transplant?
The tests were successful and I received my transplant in May 2013. Day zero had finally arrived! To be honest, initially I felt a bit of a fraud. In my opinion I was still well. (I hadn’t received any previous chemotherapy for my illness.) I considered myself very fortunate when I met some of the other patients in the transplant ward and heard about their previous treatments and illnesses.
As expected, my health did deteriorate as the chemo took effect. I can’t lie, there were good days and bad days. My hair fell out but, on the flip side, I was only sick twice. A low white blood cell count also meant a period of isolation. I was very fortunate at this point as the support I received from my family and friends, including work colleagues, was tremendous. I can’t remember a single day when I didn’t have visitors.
Funnily, the worst time was when my new immune system started to grow. It felt as if I was growing from the inside out. However, this only lasted for about 24 hours. Morphine is a wonderful thing!
The nursing staff at the Beatson hospital (and the Dumfries and Galloway hospital) were amazing. Nothing, and I mean nothing, was too much for them. They were a credit to the health service and deserve the utmost recognition.
What happened when you left hospital?
When I was discharged from hospital, everything appeared to be going as expected and I was feeling very well. But a phonecall out of the blue from the hospital changed this. Blood tests showed that my kidneys were failing and that I had to return to the Beatson immediately.
From this point things continued to go downhill. I had the Epstein-Bar virus (EBV), numerous bouts of Clostridium difficile (C. diff), the inability to eat anything and I lost a lot of weight. While in hospital receiving treatment in October 2013, I was informed that my transplant had failed.
This was a very emotional time, not only for me but also my family. I was informed quite quickly that there were other possible options but, having no functioning immune system, for my own safety, it would be best for me to go home while the consultants considered the best way forward. I received weekly platelet and blood transfusions which meant frequent visits to the hospital. Surprisingly, during this period I didn’t catch a single thing!
When were you told you might need another transplant?
A couple of weeks later I was informed that a second transplant was possible and a second donor had been identified. I was scheduled for my second transplant in November 2013.
However, a last minute phone call informed me that the donor was no longer available.
Thankfully, miracles do happen and my original donor was more than happy to make a second donation instead.
The rest of my story is like a fairytale! Everything went perfectly. Now, I’m on no medication for my transplant. I work full time and I live a perfectly normal life. All this because of one very special person.
Have you thought about your donor since the transplant? Would you be interested in meeting them some day?
I think about my donor every single day. How could you not? He saved my life and is a very, very special person to me and my family.
Your entire family has really come together to raise money and take on challenges for Anthony Nolan. Would you mind talking about the wonderful things you’ve done?
Well, where do I start? Firstly, there’s my son, Euan. He originally entered 10 events in 100 days. 100 days representing the 100 day mark after a stem cell transplant. They included triathlons and major outdoor swimming events. I can still remember one of his triathlon events that involved running in the hills of the Lake District. He had cramp about half a mile into the run and finished about an hour after everybody else. He was so determined to finish.
Then there was Euan’s epic cycle run. This was truly an amazing feat. He rode 1100 miles in 11 days pulling a loaded bike trailer. I thought he was mad when he first hatched the idea!
The Great North Run was another event that my sons, Callum and Euan, and two friends participated in. Callum ran this with a damaged ankle but true grit and determination allowed him to complete the event.
Finally, there was my partner Fiona’s cinema and prosecco night. Fiona detests being in the limelight. However, she put this aside to organise and hold this event. It was excellent with 100 people participating and a large amount of donations received. I’m not sure if this was due to the movie or the prosecco!
Taking on RideLondon after a stem cell transplant is an amazing milestone. How are you feeling about it all?
This was really the final piece of the jigsaw. It gave me a purpose to get fit and proved to myself that I had well and truly beaten my cancer. My work colleague and good friend Jason did this event with me. The ride was absolutely amazing.
Are there any other big challenges on the horizon for you?
There are many things I wish to do. I would love to cycle from Land’s End to John o’ Groats! I don’t know how I would get the time to train for this, whether my body would manage it, or how I would promote the challenge. Doing it with a celebrity would certainly raise awareness and funds. Any ideas or contacts?!
What do you hope to achieve by supporting Anthony Nolan?
My aim is plain and simple. To raise awareness and funds for Anthony Nolan, and encourage people to join the stem cell register. I was given a second chance of life by a complete stranger. I want other people in similar circumstances to have the same opportunity.
Colin will be on ITV show This Time Next Year with his donor on Tuesday 12th March.