(written March 2019)
When the news broke of Carl Ikeme’s retirement from professional football in August last year and previously Stiliyan Petrov’s too it really struck a cord with me because I too have been struggling with the after effects of the brutal treatment needed to achieve remission from blood cancer. Since then footballer Joe Thompson has also retired after initially making a return to professional football after his stem cell transplant. Joe has written about his experience Darkness & Light – Joe Thompson
Blood cancer can feel very isolating so for him to be so open about his diagnosis has been really helpful and only the other day this was discussed in one of the forums I am part of, that his story has inspired other AML patients. I hope he realises how powerful speaking honestly about it is and how much it helps.
Before Joe’s and Carl’s story’s the first leukaemia survivor story I came across also happened to be a footballer, Stiliyan Petrov, who was also diagnosed with Acute Leukaemia (in 2012). I’ve been a football fan since I was young, I was the very proud owner of an England shell suit back in the day so maybe that’s why it seems to be them! I remember very early on after my diagnosis when I took to social media to try to find other survivors I came across Stiliyan’s profile and I cannot tell you how inspiring it was to find another survivor (there are not many) who I could look to. And as time has gone on I’ve kept up with his life because his diagnosis, like mine, has meant he’s had to change his life considerably and suddenly. I am still coming to terms with the fact that my career will not go in the direction I had planned and that I need to look for another way to fulfill my need to live a good and rewarding life. I needed to know I wasn’t alone and that it was possible to rebuild.
Acute Myeloid Leukaemia, is a blood cancer which develops in the bone marrow and has to be treated very aggressively (this was one of the first things I was told). The chemotherapy used is one of the most intense and high dose in cancer treatment overall and your medical team have to strike a balance between attacking the leukaemia hard enough to achieve long term remission and the damaging effects of the toxic chemotherapy needed to do this. Quite the decision isn’t it…enough chemotherapy to kill the leukaemia cells for long enough for your to survive but not too much as to kill you (yes mortality is listed on your consent form). I remember my consultant telling me that he didn’t always give his patents the full chemotherapy regimen because their bodies just couldn’t tolerate it but it was vital for me otherwise I would not be able to maintain remission. We’d had this conversation because I was at the point where I was beyond broken, I could not take any more of the crippling pain, vomiting, isolation, infections and emotional turmoil.
When I read that Carl Ikeme was forced to retire, at the age of 32, because his Leukaemia treatment my reaction was both sadness and empathy for him. Although before my diagnosis I was no where near the fitness level of a professional footballer I know tough it is to recover from. Even after three years of battling with the after effects, I know my body feels different, I do remember how it was to be tired from a busy few days before I was diagnosed. Back then after a bit of rest I would bounce back like everybody else, this is completely different. I am not surprised that his body is no longer able to keep up with the high level of fitness and training schedule needed to maintain his career.
Every single day I have pain in my joints and muscles and the chronic fatigue makes me feel like I am thigh deep in treacle all of the time. Every time I try to do more I end up getting knocked back by illness or become so exhausted I can’t function.
I suppose I shouldn’t be surprised that my body feels battered, but this is something no one tells you, it isn’t talked about generally and naively I didn’t think would last. The after effects are overwhelming, long lasting and not something that can be rectified with a bit of rest and recuperation,
There are several issues involved;
- The bone marrow has been damaged by the disease and treatment so doesn’t work as efficiently as a normal persons does, it never recovers either.
- Damage caused by the toxic treatment and its side effects, which can be very extreme (some may suffer organ damage)
- Months spent in hospital, with treatment so harsh that patients can spend time in intensive care leading to excessive muscle wastage (I was unable to even feed myself)
- In my case the nausea and vomiting was so extreme that my weight loss, lack of fluid and calorie intake lead to more medical intervention in the form of a tube through my nose and into my stomach. Consequently the lack of nutritional intake for such a long time had a long term effect on my body.
- Unfortunately chemotherapy not only attacks the cancer cells but also healthy cells and has a cumulative effect in the body therefore taking at least 3 years to be broken down after treatment.
- Chemotherapy has a detrimental effect on the brain inhibiting the way it processes information, this has improved for me but in the beginning it was very extreme. I couldn’t speak sometimes, couldn’t understand questions and my memory was terrible. This is something many cancer patients talk about, often referred to as ‘chemo brain’.
I may not be in the same position as Ikeme, a top footballer living his dream, but my career was and still is really important to me, my identity and self esteem. When diagnosed I worked in pharmacy as a dispenser at a doctors surgery which I loved and I certainly wasn’t finished with my career. I had always planned to further my qualifications in pharmacy and work full time again once my daughter was older, those plans seem totally unreachable now.
But why should it matter if you are still alive, isn’t that all that matters?
Even though this diagnosis does change your perspective on what is important in life and Ikeme has said as much, there is still a lot to process. Yes you have survived but you have also lost a lot and been through a very traumatic experience. When you first leave hospital you are almost euphoric at finally having the freedom to be able to come and go as you please, just glad to get away from it all and get back to your life again. However, as time moves on you realise that this has come at quite a cost, your life as you knew it has gone, things will never be the same.
I am not at all ungrateful, I know only too well what the alternative would have been, but I’ve had a lot of adjusting to do. I thought about how hard Carl Ikeme must have worked throughout his life, the sacrifices he would have made to get to the position he was in when suddenly everything changed. All of the tough training sessions, early starts and times when he would have missed nights out with his mates as a youngster because he was determined to be a great footballer. His career ended in a way he could never have imagined, the last time he walked off the pitch I doubt it crossed his mind that it would actually be his last time. Not the way he’s spent his life imagining his career ending so it wouldn’t be surprising if he struggles with this at some point.
There are 240,000 people living with blood cancer in the uk with 137 different types including Leukaemia, Lymphoma and Myeloma. For more information go to The Blood Cancer UK website For support and to talk to other affected go to The Blood Cancer UK Forum
Articles on Carl Ikeme BBC Sport news The Times Sport News Sources; Oncolink.org, thebloodjournal.org, bloodcancer.org.uk,