When were you diagnosed and what with?
I was diagnosed with acute myeloid leukaemia in April 2010.
How did you find out you had cancer?
I had been off work for about a week feeling very tired and faint. I had a toothache that wouldn’t go after a short course of antibiotics and my GP did a quick blood test. I was rushed into hospital about four hours later.
What did you think and feel when you were diagnosed?
I had been skiing three weeks previously, I had never smoked, had always done loads of exercise and I have always eaten reasonably well so it was a shock. I had worked for over a decade in business restructuring (when businesses were about to go bust) so I think I kicked into crisis mode and started asking about options immediately. I didn’t feel fear until a few days later.
How did the people around you react?
My parents, my brother and my family were truly amazing. They dropped everything and came to see me in hospital immediately.
I called two trusted friends and asked them to let other people know. I was flooded with messages of support for quite a while. It was an enormous help to me having so many people get in contact to say they were thinking of me. The thought of it still fills me with gratitude.
I called one manager at work who was really good. He simply said “don’t think about work at all. Go do everything you need to do. We are all here if you need anything”.
What treatment did you have?
I had three rounds of chemo. Each round involved a bag a day for eight days. I then had to stay in isolation for about six weeks for each round.
I can’t remember any of the specific chemotherapy names. One of them looked like Iron Bru and I used to joke with the doctors and nurses that I now understand was why the Scottish drink so much of it. It’s magic.
After a break of six weeks I had a stem cell transplant. The chemotherapy killed all my bone marrow cells and the donor stem cells were put in their place. The stem cells were from a donor on the Anthony Nolan register. My donor had joined the register on a whim a few years earlier. He didn’t know anything about me until two years after the transplant. If that’s not a truly altruistic gift from one human to another then I don’t know what is.
How did you feel through treatment?
The effects of the chemo were cumulative. The first round was not as hard as later on. I had a few infections which were very serious as I had no immune system. When I arrived in isolation there was a seat in my shower and I remember asking a nurse how lazy people had to be to need a seat in the shower. About three months later, I regretted that flippant question. During the last round of chemo I was sick, very tired and emotionally drained. In the morning it would take me five mins to walk five feet to the shower, and then need a ten minute break on my seat. After my shower I would need a sleep for half an hour.
I forced myself to eat throughout my treatment. As I was neutropenic (with very little, or no immune system) all my food had to be well prepared and well cooked.
What happened after treatment finished?
I left hospital after my stem cell transplant and moved to my parents for nine months. At first, it took all my energy to walk to the end of their garden. After a month I could get to the end of the road. After six months I was walking a couple of miles. I felt sick every day for at least another six months, and over time this faded.
The most striking feature was the fatigue. At first, I would be in mid-sentence and I would suddenly feel all the energy drain from me. It was like someone took out my batteries. I had no warning. I would simply need to rest and recharge and then start up again. Over the following months and years I would be able to feel the lack of energy coming. At first this would feel like it was a few minutes away, then a few hours and then a few days. Learning to listen to, and understand, what my body was telling me was my first step in managing the fatigue.
How did you get involved with Shine?
I met a fellow leukaemia patient through the hospital I was treated at – his name is George and he has an amazing blog (https://betterfools.wordpress.com) and a truly wonderful way with words. He was telling me about a supportive community of 20-40 somethings that have had cancer and I asked where I could sign up.
What difference has Shine made to you?
I only found Shine about four years after my treatment and I wish that I had known about a community like this when I was ill, and in the early stages of my recovery. The major strength I draw from it is that while everyone has a unique journey with specific challenges there are themes that pop up again and again. Cancer can feel like an isolating journey. It’s tough. And scary. But there are people who do understand. There are people who want to help. There are people who will listen without judgement.
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
Having cancer has changed me. Some of it has been helpful, some of it not so much.
All that time in isolation considering my own death gave me space and time to think about what really matters to me. That is a gift that so many people in our society could do with. Quality time with friends and family. Laughter. Kindness. Love. I value these now more than I did before I was ill.
On the other hand my life is not where I hoped it would be. At a time when most of my friends were settling down to have families, get promoted at work or starting a business, I felt like all these things were farther away than they had been before. I was single when I was diagnosed and dating after cancer opens a minefield of its own.
If you could give one piece of advice to yourself before your what would it be?
Don’t get cancer.
I love a bit of unhelpful retrospective advice. ;)
Seriously though, work out what your coping mechanisms are and then rely on them. Don’t be afraid to admit how hard the journey is. Take pleasure in the small and big wins. There is wisdom all around you – listen for it.