In 2006, Jamie was diagnosed with multiple myeloma. After seven years of intermittent treatment, he was finally told that he’d need a bone marrow transplant to have a chance of curing his illness for good.
In today’s blog, Jamie tells us about his treatment, the bone marrow transplant itself – and the recovery process afterwards, as well as his tireless efforts to raise money and take on new challenges.
The shock of being told you have cancer can be overwhelming. Being told for a second time is devastating – even if you always knew it was going to be the case.
My myeloma diagnosis
In January 2006, I was diagnosed with multiple myeloma for the first time. Not the greatest thing to find out after a backpacking jaunt around the world, having the time of my life!
I was then told that chemotherapy alone wouldn’t be a curative procedure; I’d need to have an autologous transplant (using my own stem cells) for now, but it would be another couple of years before the disease would return – meaning that I’d require even more treatment.
That didn’t really give me a lot to look forward to.
However, I wasn’t going to let it beat me; I blocked out the prospect of it returning, and lived life to the full when I was in remission, despite knowing that it’d definitely come back.
My limbo period
In January 2011, I was told that the cancer had returned and that it would likely be a few months before I required a new regime of treatment.
The shock this time was a bit too much. Even though I’d always known it would return, the situation seemed unreal.
I had a lot going on in my life, working full-time with long hours. In secret, I’d also recently undertaken a degree in Logistics and Supply Chain Management on top of my job – which caused enough stress anyway, even without the additional burden of diagnosis!
This limbo period, between the diagnosis and starting treatment again, was particularly stressful. The only people who knew about my diagnosis were my parents and a few very close friends.
It’s a really difficult situation to be in, because you’re living your life as normally as you can; you have a daunting prospect ahead of you, but most people don’t know anything is wrong. How do you tell anyone that you’re ill when you don’t even know when you’re starting treatment again?
My bone marrow transplant
Finally, in February 2013, I was told that I’d be starting treatment imminently…
This time, the ultimate aim was for me to have a bone marrow transplant. I was told about the possible dangers of a transplant, but was also told that there was already a list of potential donors – which was better news!
I had to undergo a new treatment regime before the transplant could take place. This time, it would consist of chemotherapy, another period in isolation having another autologous transplant with extremely high-intensity chemotherapy, followed by yet more chemotherapy, radiotherapy…and a final period in isolation before having a bone marrow transplant.
This was information overload for me. It’s a lot to take in, so I had to totally focus on a positive outcome on this and live my life as normally as I could, knowing that I would need a lot of time away from work and that often I would feel ill. Before I even had a chance to think, I’d started the treatment, and entered my first period in isolation.
My time in isolation
That was tough; high-intensity chemotherapy can be very demanding and it makes you very sick. The experience is exhausting, mentally and physically. Physically you have the side effects of the drugs, feeling ill and weak all the time, and mentally it’s difficult when you’re in isolation for weeks on end, especially when you’re a sociable outgoing person.
While in isolation, I occupied myself by completing my dissertation for my degree. I also listened to music that I loved; House Music and other positive music I liked including bands like The Stone Roses and Kasabian. For me I believe that music induced a positive mind set which helped me in this kind of situation.
Friends and family would often visit me, so the support network also helped.
After a few weeks I was out of isolation, doing more chemo for a few months. Then it was time to have my bone marrow transplant.
The day before the transplant, I got a phone call from the university telling me that I had now since gained my degree and graduated – but I just didn’t have time to think and take it in. At this stage It was way down my list of priorities…..
My recovery process
The transplant itself went well. However, with a bone marrow transplant, the recovery process can take some time. I was weak and not allowed to return to work for a while, and I had quite a few scares in the recovery process that thankfully turned out to be quite minor problems.
I was lucky not to have any issues with GVHD, although there were some suspicions at the time. The team at St James, Leeds, were brilliant and monitored me thoroughly, and if anything was remotely out of the ordinary they would check me out – always within a few hours.
Putting the scares aside, the most difficult part about the recovery was the waiting and the monotony – which means you can dwell on things, particularly if you live alone, as I do.
There was one period where it started to get on top of me, and I started to get affected by anxiety and depression, having sleepless nights.
I discussed this straight away with people and also read an article online, which said that it’s almost certain that a period of stress and anxiety is likely to occur during the same timeframe after a bone marrow transplant. This period lasted a few weeks. Thankfully, I haven’t had it since, and I wouldn’t wish it on anyone.
Thankfully I’ve got a good network of friends and family, so when I had my period of anxiety I spoke to them; that helped me tremendously. To anyone going through this, I’d just say that it isn’t a good thing to bottle things up; get out and speak to someone. Don’t let it build up!!
There are also specialists you can speak to, either provided by the hospital, or charitable organisations such as Anthony Nolan or Macmillan. A support structure of friends and family will help and the experts will help – don’t keep it to yourself!
Building my fitness back up
Months later, when I got back to work and some normality back in my life, I thought that it was absolutely essential to get my fitness back. I started running and hitting the gym. I even went to a dedicated boxing gym in Bradford for a while. Even though I was weaker than before, I gave it 100%.
I noticed the results, too. I was faster and stronger for sure, and I had lost a lot of weight. (This was the result of my exercise regime and not the chemotherapy, as a lot of my friends thought it was.) There was often a gasp when people met me who hadn’t seen me for a while.
The training and the exercise had a great effect on my general wellbeing; I felt a lot better physically and my mood improved significantly. I was stronger and could run considerable distances, whereas during some of my treatment and post-transplant I’d seriously struggle to walk a mile. Now I have even managed to walk the entire length of Hadrian’s Wall in five days!
I think exercise and looking after yourself is only a positive thing if you have gone through BMT; it’s good to do something to keep fit. You don’t have to run or go to the gym; even walking is going to be beneficial to you, and I truly believe it helps you both physically and mentally.
After doing this for a while I decided to test my fitness. I decided – impulsively, maybe the night before – to do the Yorkshire Three Peaks with a friend of mine, another cancer survivor. I found it difficult, yet I was glad that I had conquered this milestone.
I’ll be honest – I did it for personal reasons, to gauge my fitness. But I thought it’d be good to raise money for Anthony Nolan, so I set up a charity page. Even though this was after the event, I still managed to raise over £500!
I also took part in the Leeds Abbey Dash 10K, which is flat on the road, and the Chevin Chase, an off-road country event (the weather was atrocious!).
In 2016 I entered the Great North Run – and ran for the Anthony Nolan running team which was an absolute honour raising around £2000 for the charity. I have also taken part in numerous competitions since and collecting more medals.
It doesn’t stop there I have once again entered the Great North Run again for this year as I still want to raise essential money for the charity that helped me so much, and I will be competing again in the Great North Run once again running for Team Anthony Nolan #TeamAN raising invaluable money and raising awareness for this fantastic cause.
I want to show other people going through a stem cell transplant that there is light at the end of the tunnel and that you can get well. And if you put your mind to it, you can do it – whatever it may be.
Through advances in treatment regimes, there are better options available to patients. The essential link, of course: donor cells and bone marrow transplants, making blood cancers and other disorders curable, replacing someone’s immune system with that of another person – it’s pretty amazing!
It’s also remarkable that people come forward and donate their stem cells, helping people like myself and others. I would like to say a massive thanks to my donor, whoever you may be. There will be a time when I take the first step to contact you, but I want to do this run first!
A massive thank you to the Team at St James, Leeds; they are absolutely outstanding. Professor Cook, Suzanne, and the rest of the team, all of the nurses – they’re superb. (And of course, to Anthony Nolan, thanks for having the system in place which helped me. Thanks for saving my life!)
If you would like to sponsor me and raise money for this fantastic charity please do: www.virginmoneygiving.com/jamiebarugh