How did you know you were ill? What were the symptoms you experienced?
I'd had a couple of really hectic weeks at work and after a particularly tough day I got home and just collapsed on the couch. I was so tired I couldn't move. That night in bed I developed a fever and was shaking uncontrollably, my wife put about 4 extra blankets on me to warm me up. On the Monday I came out in a big rash all over my torso, shoulders and arms. These were initially diagnosed as Hives in Missoula and I was given some antihistamines to control them, the hives turned into chicken pox like blisters and during this time I was back home in England at my brother's wedding for a week and I was really sick. Tired, no appetite, mouth sores, so I saw a doctor in the village my Mum lives in and he said it was the worst case of chicken pox he'd ever seen and gave me a prescription for some anti viral medication that helped somewhat. I had chicken pox when I was eight, so I was a little puzzled, as were the doctors. When I got back to Missoula I saw my GP, he ordered a blood test and it showed dangerously low blood cell counts and he ordered me to stop everything. He also set me up with a Haematologist appointment that took three weeks to get. Before the appointment, I had another blood test and the counts hadn't improved so he wanted to see what was going on in my bone marrow and ordered a biopsy for the following morning. That was when I got a little nervous.
Do you remember how you felt when the news broke?
It was 8.40pm on June 13th 2013. I felt like my heart had been ripped out, I was speechless. I couldn't even talk back to my doctor on the phone, I was just dumbfounded. A million thoughts went through my head; what about my kids?, my wife?, what about my job?, will I become bankrupt? I suddenly burst into tears but stifled it with the nearest piece of clothing I could find. After what seemed like an eternity, I got the courage to walk upstairs and break the news to my wife, and it was at this point that I realised that this is going to devastate a lot of people I really care about. It's not just you that gets a diagnosis, it's everyone close to you. Seeing how grief stricken she was while trying to comfort me and make sure that I felt ok broke my heart. I just wanted to fix her pain.
What did your treatment involve?
Treatment started the next day with the first of about 8 spinal injections that test your spinal fluid for cancer, and administer chemo to make sure that your spine and brain are protected. At the time of diagnosis, the cancer was advanced, I had 95% leukaemia in my bones. I was resistant to the chemotherapy initially. It took three rounds of chemo to get me into a remission. I contracted a bacteria infection in my skin that ran rampant because I had no white blood cells to fight it off. I spent weeks in hospital on an IV drip of antibiotics and all sorts of other medications but they eventually worked and I was let home. Actually I wasn't ready, but I pleaded for them to allow me to go home and be with my boys.
Because I wasn't able to get into remission after the first two rounds of treatment, and after the second chemo I still had 20% Leukaemia left in my blood, I was advised that my best chance of survival was to move forward with a stem cell transplant. A week later I flew from Missoula to Seattle Cancer Care Alliance. I had two more rounds of chemo as an inpatient at the University of Washington Medical center to keep the cancer at bay. During this time I was told they found a perfect match in Europe and my transplant date was set at October 29th 2013.
What were the main difficulties you found throughout your treatment?
The bacteria infection was really difficult and very painful because I couldn't fight it on my own. But the biggest difficulty was not being able to see my kids due to being neutropenic (really low or non existent white blood cells). Sometimes I wouldn't see them for a week while I was an inpatient, but when they came in with their little masks on and came and lay on the bed it totally brightened my day and reminded me how much they need their Dad to be around.
What is it like to have chemotherapy? Does it hurt?
No, it doesn't hurt at all. It made me sick though. With each round of chemo I would get sicker and sicker, after the fifth round I felt very nauseous, tired and pretty fed up with it all. You are told that your hair will fall out about 3 weeks after the first chemotherapy. When it does start falling out even though you know it's going to happen, it's a morbid reminder of your situation, you aren't able to see what's going on inside but you know it's a bad thing when your all your hair falls out. I was more or less bald for 8 months so you get used to it though and it answers that question you've asked yourself before, 'What would I look like totally bald?
Did you find that you had a long-term goal for your treatment? Or did you take each day as it came with a 'step-by-step' way of dealing with everything?
I think everyone has the same goal, to beat their disease and be healthy again. But I dreamed of celebrating our ten year wedding anniversary which is August this year, watching my boys grow up, a round of golf with my dad and brother, returning to the job that I love. But I was impatient to get to the next step, I just wanted it to be over and for my family. Early on my Dad came out to visit, followed by my Mum and then my Brother. I would look forward to having them around and taking my mind off it. They were so encouraging when they were here, I wanted to make them proud and keep fighting. It's a very 'day to day' experience getting treated for Leukaemia, lots of clock watching and trying to keep your mind active and not going to those dark emotions. I kept it very simple, I didn't want to learn about my disease or look at any survival rates. I kept as positive as I could and I wanted to make sure that everyone that came into my room enjoyed interacting with me.
What impact did your illness have upon your family?
It was devastating, particularly for my Mum. I had my brother break the news to both Mum and Dad back home in England. With everything I was going through I just couldn't face my parents and tell them I had Leukaemia. My Mum had a benign brain tumour removed a couple of years ago, my Uncle and Grandfather died from Cancer so we've had experiences. During diagnosis and treatment my wife was so caring, it must have been tough for her to comfort me when I was down and then go and be a Mum to two crazy little boys. My little family as a whole have actually benefited from my illness, during this time I got a lot closer to my kids as I was home a lot. My wife was there with me all the way and has been such a rock. I have so much admiration for her.
Did you feel there was enough patient support for you throughout your treatment?
I wasn't interested in talking to anyone until my transplant. I got enough support from the doctors and nurses, some of whom have become close friends. I received the support from my family coming over to visit, and having my wife by my side every day. But after the transplant I felt lost, why is my skin itching? Why don't I have any appetite? When is my hair going to grow back? Am I supposed to feel this sick? I thought everything would just fall in to place after the transplant. I talked to a few transplant patients but a lot of their situations were different, they had a related transplant, or an autologous transplant (where a patient receives their own stem cells) and they had very different experiences. Early on in my treatment, my Mum was talking to a friend who knew about Bpositive. Mum got Jonjo Rooney's email address and sent him an email, Jonjo got right back to her and she forwarded his message. I wasn't talking to anyone early on, but when I got home after the transplant I was in such a bad way I had to reach out so I emailed Jonjo. Every other week it felt like I would ask him about his experiences and say I'm experiencing this, is it normal? He'd get right back to me and reassure me that it was in fact normal. That was comforting. I also had a social worker that talked with all the other transplant patients and she was great too, I needed to talk a lot after the transplant.
Did you have any coping methods of your own which helped you with your treatment?
I mentioned it earlier, but I didn't want to know any statistics for survival rates. I knew that if I kept positive and did what the doctors told me I would be ok. One of my nurses told me that even if the survival rate was only 10 percent, what is to say that you wont be in that group? I got used to setbacks and realised that everyone's recovery is different. I stopped yearning to be a medical miracle and realised that it was going to take time. During the boring days I read a lot. One of my best friends sent me a book called 'Engage'. It's about a guy called Matt Hampson who was paralysed from the neck down in a scrummaging practice with England U20s rugby. At times it was excruciating, his drive and positivity were infectious and he went on to set up a very successful foundation. I read it in two days and at the end it dawned on me that however bad it gets, I can still hold my wifes hand or hug my boys. It was an inspiring book that came at the perfect time. After the transplant I listened to a lot of music, I started playing my guitar again and went out walking in the fresh Seattle air. You've got to stay active.
Did you have any communication with other patients battling a similar disease? If so, did this help?
My doctor in Missoula set up a meeting with an ALL survivor 4 days after I was diagnosed. It was really kind of her to come and meet us but I'd just woken up from surgery to have my Hickman line inserted into my chest. I lost her details so never contacted her. I really only talked to a couple of people after their transplants, I would ask them questions about GVHD (Graft Verses Host Disease – a condition that can often occur as the result of an allogenic stem cell transplant) or how they were recovering from the radiation. It did help to know that they were experiencing challenges too. It made me calm down.
How did you feel when you found out you would need a bone marrow transplant?
I was disappointed, because I thought that the last chemo would have killed off the cancer. I was also terrified because I knew nothing about a transplant. It sounds like major surgery and in a way it is, but in reality it's just like a blood transfusion. My brother was with us when they told us he wasn't a match. We were all down about it, but faking the positivity. It was the not knowing that was the hardest. Is there someone out there that can help me? When I got the letter from Be The Match saying that they had identified numerous complete matches that was a great feeling.
"Some times I'll walk out the front door and look up to the skies and take a big deep breath and smile"
For those who may not be aware, can you briefly explain what procedures you had to go through for your bone marrow transplant.
To start with you do a lot of testing, lung tests, heart tests, infectious disease screening, organ function tests, blood tests. They want to make sure that your body will be able to take what they're going to put it through.
Conditioning for the transplant was tough. For three days I had total body irradiation for twenty minutes in the morning and again in the afternoon. This was followed by the highest dose of chemo I'd taken throughout my treatment. This is to ensure that there was no exisiting blood cells or cancer left in the bone marrow. This all made me very sick and weak. I had Mucositis of the mouth and throat due to the radiation attacking the soft tissues. It was agony for a few weeks, I couldn't stop spitting or throwing up. I wasn't able to eat any solids for a week either, they put me on liquid nutrition but slowly I started to eat more and my first white blood cells came about 6 days after the transplant. I was let home a few days later.
After the transplant, I went home and that was the toughest part of the journey for me. Particularly psychologically, I felt dreadful for about two months after but gradually began to get stronger, eat more and became less grumpy. I was really emotional too, looking at different pictures of my family would always set me off. Luckily my wife is an amazing person, she helped me through those tough times, took the kids out when I couldn't cope and made sure I took all my medication on time. For one hundred days after the transplant I had to be twenty minutes from Seattle Cancer Care Alliance. I was in there daily getting my blood tested, seeing nutritionists and psychologists – I had a pretty full schedule.
Do you feel that your outlook on life has changed at all? If so, how?
It's profound. Not many people get a second chance at life. Some times I'll walk out the front door and look up to the skies and take a big deep breath and smile. What I've written in here sounds brutal, and it is. But after all this hardship and joy at remission your eyes are opened in the most beautiful way. So many people have been kind to me throughout my treatment. Amazing nurses that work long hours and deal with very sick people all day long, the doctors, my family and friends, my colleagues. So many people wanting to bend over backwards for you, I feel incredibly humbled by it all. My faith in humanity is stronger than ever.
How has your life moved forward since receiving treatment for your illness?
My life has been enriched by the experience tremendously. I appreciate everything more than I did. I'm keen to try new experiences and enjoy every minute. You learn a lot about yourself going through cancer, a lot about your body and how to stay strong mentally. I wanted to be an example to my boys on how to handle adversity, so there is a certain level of pride and self confidence that comes with it to. But most of all I'm just really enjoying my life.
Finally James, what makes you Bpositive?
When I hang out with my wife and we laugh non stop, when I watch my kids sleeping or learning new things, when I see the joy on my parents face as they've seen my progress. There is so much to live for, I've realised how lucky I am and I'm so determined to make the most of my second chance in life, anything else would be a huge waste. Oh and England winning rugby matches, that makes me really positive!