Then my whole world was turned upside down when I was diagnosed with Ewing sarcoma in my left femur in April 2009 after experiencing pains in my knee.
The pain started in February 2009 from 'nowhere' when walking along Brighton Pier on a weekend away. However, I had been running a lot at that time training for a half marathon and going to aerobics 3 times a week. So the obvious assumption was that I'd pulled a muscle or something. When trying to carry on with my normal, active life it continued to get worse and after over a week of sleepless nights and struggling through days of teaching, I decided I needed to see someone. I was unable to get an appointment at my GP surgery or with any local physiotherapists, both of whom I thought could help me at this point. With encouragement from my dad seeing how much pain and distress I was in, we went to A&E. Something I never would have done myself, not wanting to cause a fuss, but thank goodness we did.
An x-ray at A&E led to an initial diagnosis of torn cartilage as the bone appeared fine. I'll never forget those words 'the bone is fine'. Little did we know how wrong they could be! I was told I should see a specialist but that it could take months to get an appointment on the NHS. At this point I'd been told to use crutches and not to drive if the pain was too bad. It was! Knowing what a struggle it would be to continue teaching unable to drive or to be mobile and active once there, alongside the pain I was in, I knew I couldn't wait that long. Luckily I have private BUPA medical insurance, so it was arranged for me to see a private specialist the very next day. This specialist also initially diagnosed torn cartilage but sent me for an MRI scan as a precaution and to give him more information on what he was dealing with. He seemed so confident it was cartilage though, that I wasn't overly concerned. Not over the moon with the thought of surgery and some time out of action of course, but nothing too major. My mum came to the MRI scan with me and whilst waiting to go in, for no reason at all I remarked that 'I wish I could have a whole body scan just in case. I mean, I could be walking around with cancer or anything.' Little did I know?
Less than a week later I was called to discuss the results of the scan. By this point the pain had virtually gone and I had the movement back in my leg and my knee joint. I'd begun to think maybe it wouldn't even be the cartilage and that I'd just had swelling due to pulling a muscle or something and it had healed itself because I'd been resting it. I thought back to my visit to A&E and felt bad for wasting their time and this specialist's time! Unfortunately the most unexpected news was to follow. I sat down cheerful and pleased to tell him the good news about my leg. I'd gone alone to this appointment (the first and the last time!) because my boyfriend and my mum had other things going on and I told them I was fine and it'd be nothing major at this appointment anyway & I could drive myself by then. As soon as I'd shown off to him my leg movements with my big smile, his face said I was about to find out something I didn't want to. The scan showed a tumour at the base of my femur which was causing the knee pain. Just hearing the word tumour, screamed 'cancer' to me but the specialist thought it was highly likely to be a benign tumour called a giant cell tumour. Due to my age and sex it was highly unlikely to be cancer. This is when I was referred to a different specialist in Oxford.
Everything was a blur and with so much unexpected information, I couldn't take it in or understand it. I managed to keep myself together enough to engage my brain to ask a few questions and ask him to write down the basics of what he'd told me as I knew I'd leave the room and have no idea what he'd said. A biopsy was arranged in Oxford and then was the 2 week wait. Those around me remained positive and wouldn't let the thought of it being cancer enter their minds, particularly as we'd been told that although a possibility, it was very unlikely. I knew though?I just knew it was going to be cancer. 2 weeks later and another trip to Oxford, this time with my boyfriend, mum and dad and the results were back. From that moment on, my life became surreal. I was to have several tests that week and start an aggressive course of chemotherapy the following week. My main concern and my only question at first was whether my hair would fall out. Yes, it would and quickly. That soon became insignificant. Who needs hair when your leg and your life are at risk?! Then came something I hadn't even considered. On 20th April when I was told I had cancer, that wasn't actually what upset me the most. Not the thought of losing my hair or having my life as I knew it crash around me. Not the fear of whether I'd keep my leg, or live or die. I'd prepared myself for all of that in a weird way.
During the 2 weeks from the biopsy to hearing the results I'd been through all the 'what ifs', the devastation, the 'why me?', the scouring the internet for information on bone cancer that might make me feel better, but of course didn't give me what I wanted to hear. I think I was better prepared for the diagnosis than anyone else because I JUST KNEW. I really did just know that it was going to be cancer. But what I didn't know and hadn't prepared myself for in any way was to be told that the chemotherapy was to be so intense that it would be highly likely to leave me infertile. This shocked and knocked and devastated me more than anything. The conversation in that room about my future fertility was a short one, with so much other information to take in. But it was a simple one. My professor clearly said that it would take 6 weeks to harvest my eggs and we didn't have time because I needed to start the chemo asap. My dad, knowing and seeing how much having children means to me, asked 'what if Cara does decide to harvest eggs and wait the 6 weeks?' He simply answered 'We'd be talking about Cara's life.' As in risking it. I just could not speak at this point. Something that doesn't happen very often! I've had to be reminded many times that there's no use me being fertile if I'm not here to have children. It's very true and logically of course it makes sense, I had to have the chemotherapy to keep me alive. But it doesn't make it any easier to deal with emotionally.
So, there we are. That's what I've found and do still find the hardest to deal with to be honest, although there's no possible way of ordering what's hardest about coping and living with this evil disease and such intense treatment and life change. My boyfriend, Chris tells me we need to take one thing at a time and I know he's right. He tells me I just need to focus on getting better first and then on enjoying life and having some 'me' time and then we'll look to the future and deal with whatever comes our way. If we can get through this, we can get through anything. I know he's right but there's not a single minute of a single day that it isn't on my mind in some way. With something so important to me potentially being taken away all because of this stupid illness that's come from nowhere and is no-one's fault?well there's just no answers to any of it are there?! We still have hope though, nothing's certain and you don't know what's around the corner. Hopefully if I'm rare enough to have got this cancer, I'm rare enough to have kept my fertility?
I have now finished my chemotherapy after 13 cycles and surgery to remove the tumour from the bone. I had 13cm of bone removed from my femur and replaced with metal and a full knee replacement. The pain and discomfort continues, as does physiotherapy to aid my recovery, but I do count myself as very lucky to have kept my leg as not everyone is so fortunate. The chemotherapy was gruelling and it's impossible to describe just how intense those months were. The side effects were beyond imaginable and I was unable to do almost anything for myself at times. I even had one spell in intensive care. But I have amazing support from my boyfriend, my family and my friends and you get through it because you have to.
The journey I have been on has been a rollercoaster ride and still continues to be. I think it's underestimated just how difficult it is when the treatment stops. But what I do know and think of ALL the time is that it could be worse. I'm not the worse off that I could be, like I keep saying I've got fantastic support from SO many people and an amazing life other than cancer and all that comes with it. I do count myself lucky lots of times everyday, no matter how down the rest of it gets me, I'm still here and I'm still smiling (mostly!)
I am passionate about fundraising for cancer charities and to raise awareness of bone cancer. My ultimate dream is to write my story into a book and to be published.
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