When I was diagnosed with Acute Lymphoblastic Leukaemia in December 2006, the shock and fear were palpitating. Eleven years and one stem-cell transplant later, I'm back to living life the way I prayed I'd be able to when I was in hospital. It's by no means been an easy journey but it is possible. Here's my story ...
Back in 2007 undergoing my stem cell transplant
It's at this time of year I always take a few moments out of all the last-minute Christmas and New Year’s Eve preparations to reflect on another year passing; it’s eleven years since my world was turned upside down when I was diagnosed with Acute Lymphoblastic Leukaemia in December 2006. You may remember in our bulletin last year I shared my diagnosis story, with you. This year I wanted to share how I feel being so far on from that day and the impact it’s has on my life since.
At times it all feels like it was only yesterday. I still remember the feeling I had when I turned up at Redditch Alexandra Hospital. I’d been at the Villa game (we lost, naturally) and despite having excruciating back pain, shortness of breath, blood spots and bruising, I didn’t think for a second there would be anything seriously wrong. Yet, just a few hours later, I found myself having been transferred to Worcester Royal Hospital and suddenly holed up in an isolation room undergoing chemotherapy. The days turned into months and I’d often sit by my small hospital window waving at strangers passing by; it felt like my only interaction with the outside world. Seven months later I was transferred to Birmingham Queen Elizabeth hospital to undergo my stem cell transplant. It was here I would, at times, float in and out of consciousness whilst consuming large doses of opium to soothe the searing pain in my throat and encounter some of my darkest days.
I’d often sit by my small hospital window waving at strangers passing by; it felt like my only interaction with the outside world
Yet, despite these vivid memories, two years of treatment including highly intensive chemotherapy, and a life saving transplant, I really don't feel a great deal different to how I did back then. I’ve always tried to live my life to the full and relish new opportunities and, thankfully, I still continue to do so. I like to think I’ve grown up from the care-free 23-year-old I was before my diagnosis but I’m still very much the outgoing, fun-loving, happy person I’ve always been. That’s not to say there haven’t been some noticeable changes. My illness and treatment as a whole has left me with a shorter temper and a higher level of impatience with things. I attribute this to my initial poor prognosis and the need for immediate treatment, taking away my chance to perhaps process things properly and take in the enormity and severity of the situation I was facing. There was some fantastic help available at the time and I spoke to both a counsellor and psychotherapist, both of which helped enormously. But, in the aftermath, I suppressed a lot of how I felt and at times I still feel the effects of that today. Since full body radiotherapy I’ve noticed my attention wanes more easily, my ability for mental arithmetic has reduced significantly, and my general understanding of situations or simple working out of things takes me longer to process, all of which can frustrate me greatly. I was told by my consultant in Birmingham that these things could happen as a result of treatment but I hoped, and expected, it would be temporary rather than permanent.
I really don't feel a great deal different to how I did back then. I’ve always tried to live my life to the full and relish new opportunities and, thankfully, I still continue to do so
With any diagnosis, it’s not just changes within yourself that you notice. People around you often feel the effects just as much, albeit in different ways. Close friends and family often worry about you more than you do yourself and want to treat you with kid gloves; any sign of an ache or pain and they are the ones encouraging you to go to the doctors as a precaution. And the emotional scars can last a lot longer than any physical ones. Those closest to you never forget where they were when they heard the news and how they felt receiving it. I was reminded of this last year when many of my friends and family made me an anniversary video of how far I’ve come and how my journey still resonates with them to this day. In truth they have all been my saving grace over the last decade. They all stepped up when I desperately needed their support and they haven’t changed at all in how they treat me; I’ve always been Jonjo to them and never Jonjo who had cancer.
A chat with my mom a short while ago really struck a chord too. She said that I'm still very much the same person and that all the aspirations I had in my early twenties remained once I was on the road to recovery. Ambitions such as wanting to travel the world, experience other cultures, meet new people, live and work in London, learn to play the guitar, and buy my own house were and are still as important to me. I made sure when I was given clearance by my team of consultants that I took myself off on the round-the-world trip I’d longed for and I have now been in London now for the past seven years, currently living in the flat I now own. I am still as excited by life and all it has to offer and my illness certainly doesn’t hold me back in any way.
Living life to the full in Loas, South East Asia in 2010
The biggest question I get asked is if I ever worry about my cancer coming back. In truth I can honestly say I don't. I am lucky enough to have had my life saved by an incredible man called Andreas who signed up to be a donor when he was in school in Hamelin, Germany. I often joke that I’m in a better place than most as I’ve been rebuilt by a German. He was my closest match for my stem cell transplant and my body, thankfully, accepted his bone marrow. I feel it would be unfair of me to have spent the past decade worrying about a relapse after being so lucky to survive the initial diagnosis and then the transplant, so I choose to focus on where I am rather than where I could be. In the early days it definitely crossed my mind but as the years have passed it’s been much easier to let go of those worries and thoughts. I’ve never wanted to allow my illness to define me so my choice has to be to look at it as if it were any ailment that has now passed. Many people I know have not been as fortunate as I have so I feel it is as much a testament to them as it is myself that I try to live with no fear and a positive mindset.
My family and friends all stepped up when I desperately needed their support and they haven’t changed at all in how they treat me; I’ve always been Jonjo to them and never Jonjo who had cancer.
And, of course, I am forever indebted to the NHS. I still have annual check-ups and a blood test back in Birmingham to ensure my counts are all presenting as normal. I decided early on to continue going back home for these yearly visits rather than bring them to London as I like to go and see my consultant, the person who has helped me so much throughout the past eleven years. It’s always a sobering reminder of what an incredible job these doctors and nurses did for me and I hope that my visits remind them of the great work they do too.
With my Mom at my new house in London, 2017
The biggest change to my life over the past even years has been setting up and running Bpositive. When I was laid up on my hospital bed on the East 3a bone marrow transplant ward in Birmingham undergoing daily treatment I prayed to God that I would get through it all and be able to continue with my life. When it’s compromised you just want to do anything you can to eradicate that fear and worry of dying and get yourself back to your own normality. I promised myself that if I made it out the other side I was going try to help others who were affected too. There were often times I was without anyone of a similar age or with a similar diagnosis to talk to. I kept a diary and signed off everyday with my blood group and special mantra – Bpositive. And now, that ambition and promise has become a reality. We’ve been registered for nearly five years and through the work that Bpositive does I am often in consultation with people affected, like I was, by acute leukaemia. It’s the greatest privilege to be here now talking to others and helping them through their own journey. Without my own experience I wouldn’t be able to do this. I’m a great believer that life brings you challenges for a reason and mine has taught me the value of what I have and brought me closer to what I love most in the world – interacting with people.
It’s the greatest privilege to be here now talking to others and helping them through their own journey. Without my own experience I wouldn’t be able to do this.
Everyone who encounters leukaemia will have a different experience to mine but I hope that by continuing to share my own story and other peoples' through our monthly bulletin that it will help many people who are facing similar difficulties to those I did eleven years ago. To know that the things I dreamt of from a hospital bed are happening fulfills me with such personal triumph and happiness. It really is the driving force behind my thirst for life.
For anyone facing their own challenges in the coming year, don’t lose sight of your own hopes and dreams and try to always Bpositive.
Do you know someone who has been affected by acute leukaemia?
Would you like to share your story with us? If so, get in touch here.
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Would you like to share your story with us? If so, get in touch here.
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