Amy was diagnosed with osteosacoma at the age of 11. 15 years on, she looks back at her diagnosis and treatment and discusses what her life looks like now.
Diagnosis and treatment
I was diagnosed with osteosarcoma when I was eleven. I had had some mild headaches and my Mam noticed my eye had swollen up. I booked in with the doctor, not really thinking much of it.
I am pretty sure the doctor knew straight away there was a lump behind my eye. I was sent straight off to the eye hospital that day. A few weeks later, I was starting my first chemotherapy for an osteosarcoma behind my left eye.
I have always weirdly felt extremely lucky with my situation. I was in an NHS Trust that saw me quickly and started my treatment within a couple of weeks of my doctor’s appointment. I seem to remember my consultant saying I was only one of a few people in recorded medical history to have the type of cancer in the place I had it. They gave me three different types of chemo, not knowing if it would work or not.
Due to various complications you would expect, less than a year’s schedule for the chemo turned into nearly two. Finally, I had my operation to remove the tumour. This was a high-risk operation that required three specialist surgeons. I was assigned a counsellor beforehand to try to prepare me for losing my eye, and having a disfiguring dent in my face, along with a whole array of other complications I was not told about and only found out years later. The first words that came out of my mouth when I woke up with faces peering down at me was, “Have I still got my eye?” Everything was a success. Tumour gone, eyes where they should be and no dent.
When I went to my final follow up appointment with my consultant, and she told me I was officially discharged age 18, I just burst out crying. Embarrassing, Kimmy K cry face, uncontrollable tears. I think it was the first time I ever cried about it throughout the whole 3 years of treatment and 5 years of follow-ups. Being 11 when I was diagnosed, I was old enough to understand and not be scared, but not quite mature enough to ever think ‘I might die from this’.
By the time I was fully discharged, 7 years had passed. I’d obviously become more emotionally mature to the situation and had time to reflect on just how serious it was. My consultant saying the words that she is confident that it will never come back opened a flood-gate of emotions I didn’t even realise I had towards the situation; the relief of knowing this was never something I had to worry about again.
Living beyond cancer
It’s strange because part of me feels like having bone cancer hasn’t affected me in the slightest, but another part of me feels like it still now, 15 years on, plays a huge part in my life. In one way, I’m a healthy gym goer who lives a ‘normal’ life, has a decent job and is saving to buy my first house. In other ways, I think I’ll always see ‘I had cancer’ as my defining fact making me different from a lot of people I meet. When I’m asked to name one fact about myself, it’s the first thing that I think of. Nine times out of ten, it’s not appropriate, so I stick to ‘I once had a night out with Johnny Rotten’ (True story!)
During my late teens and early 20s, I was very embarrassed of the fact I had had cancer. If people asked me about my scars I’d lie and tell them it was a ‘childhood accident’. During school I was known as ‘Cancer Girl’ and I think coming out of school and moving on with my life, I wanted to leave that behind. I even moved from my home-town to get away from people who knew me just for that reason.
As time has gone on, I’ve come to realise that I just can’t ignore it. It is something that shapes who I am today and is something I should tell people about. When I hear people's bone cancer stories, I can’t always relate to them as my case was so rare. I never had to worry about potential amputations and things like that due to where my tumour was. That’s part of the reason I wanted to tell my story, as it is a bit different from the norm, but I’m sure I’m not alone.
A huge way in which having bone cancer still affects me today is through mental health. I have been diagnosed with an anxiety disorder and regularly suffer from panic attacks. Basically, I am hyper sensitive about anything in my body.
I think mental health issues as a result of cancer diagnosis is a huge issue for many people who have been through what I have been through. Mental health is something that was never discussed during my treatment but is just about the only thing that is still affecting me all these years later.