This is a benign tumour, which usually needs an eye keeping on it, but can occasionally develop over time. No follow up, but that makes me aware of a lump on the top of my thumb. It's not painful, my thumb works fine, no worries.
A clumsy accident at work sends me to A&E. Smacked my thumb on a door as it bounced back off a wall, and hyperextended it. It was still sore several hours later so I went to get it checked out. An X-ray shows a large tumour encompassing the whole metacarpal bone of my left thumb, where the previous enchondroma had been found. Obviously it's developed in the last six years. I come to see the orthopaedic surgeon the week after in Fracture Clinic, and he refers me to Birmingham, to the Bone Tumour Service, still thinking it's an enchondroma. The risk is that they can break because the structure of the bone is weak, and it may need some surgery to strengthen it.
I went down to Birmingham early December had a biopsy and an MRI and came home to wait for the results. A phone-call a week later from the surgeon. It's not an enchondroma any more, it's a chondrosarcoma, and it's malignant, and it needs to come out. It's a low grade, and they think it's all still contained in the thumb, but I need further investigations to check that it's not spread anywhere before my thumb is reconstructed.
What? I couldn't believe it.
So now it's my turn. Truth be told, I've been waiting for this day for years and years. Despite doing everything I could to prevent cancer, it's got me at the age of 48. I've never smoked, I've eaten healthily and kept my weight in check, I've not gone mad with partying and alcohol, I've taken regular exercise, I've helped other people all my life, but here we are. I have a primary bone cancer and I am terrified of what the future holds for me. The news came as a surprise. I was not expecting the tumour to be malignant, it was supposed to be a benign tumour that's easily fixed, and suddenly I'm in a world of investigations, surgery, pain and uncertainty.
Having cancer in the 21st Century is a different ballgame altogether now, compared to when my nearest and dearest were at this stage. Nowadays screening and methods of detection are so much better, and when it is found, treatment options are available, and can be quite effective, if the disease is caught in time. Everything I've read about chondrosarcoma so far should fill me with hope and relief. If it hasn't spread anywhere else, and it's removed, 90% of people who develop one are still alive and kicking after 10 years. Even if it does spread, there is chemotherapy and radiotherapy to deal with secondary deposits. There is ongoing follow-up for several years in the future. I am being treated in a world-renowned international centre of excellence for bone cancer, by a professor who is an expert in his field, who has led research projects and had studies published in eminent journals around the world. I couldn't be in better hands.
So why am I so scared? It's because nobody in my family has survived cancer before. There, I said it. Going back three generations, lots of different cancers, and not one survivor. I'm scared of what lies ahead if there is spread, and being ill, in pain, disabled, and not in control of what is happening to my body. I'm scared of the extra work and stress I will put on my family and friends who may have to care for me, and watch me die. I'm scared of the surgery I need to have, I'm scared of the chemo and radiotherapy I may need if there is any spread. I'm scared of leaving my daughter behind before she's fully grown and while she still needs me, and I'm scared of missing all the things I should be taking part in if I die before my time. I'm scared for my wife who will be left alone.
So far I'm feeling OK. I feel well in myself, but it's only been a week since I got the news. When I put the phone down on the doctor from Birmingham, having just been told I had cancer, I sort of felt nothing at first. OK, not what I was expecting, but it's OK, they can deal with it, they can fix it. Felt numb, that wasn't too bad, I've had worse news. I told my wife when she came in from work, straight face, no real emotion, "yes, it is cancer. I need some surgery, and some more tests, but they can fix it." I almost lost it when she said "Are you gonna be OK?" but regained my composure. So many levels to that question.
Later in the evening, I phoned my siblings, and told them the news. They were all shocked, surprised, supportive. It was difficult telling them their big brother was ill, with the same disease that killed our parents. Not sure how they took it, and what they discussed between themselves. I don't think I'll find out for a while until this is all over and done with.
Sleep eluded me until the wee small hours. I delayed going to bed and sat up on the computer procrastinating with Facebook, Wikipedia, BBC news, and back to Facebook. The TV was on in the background, but eventually I had to go to bed. I lay there in the dark, my wife in a deep sleep, and my mind churns and churns, over and over, round and round. Eventually I fall asleep, but it's not a good sleep. There is pain from the biopsy, snoring from beside me, and then the house wakes up too early, just as I'm getting comfortable.
Day 2 I lost it, while speaking with my brother on the phone. He has the knack of making me look deep within myself and expose my most secret thoughts. Here's me, all big and brave, talking about cancer like it's no biggie, and then suddenly I'm a gibbering wreck in the middle of the car park, crying furiously through fear, anxiety, frustration and injustice. I realised a while ago, we cry when we are powerless over the situation we find ourselves in, and that's how I felt that morning, completely powerless over this situation. I hung up quick before he heard me blubbering. Same when I went to see my manager, who squeezed me into her busy day. There is something about cancer which stops people in their tracks, and knocks them for six, whether it's hearing the news about yourself, or about someone who is close to you, a friend, a family member or a work colleague. The most common phrase is "Oh no!" followed by "but you never smoked!" Yes, I know, and that's what makes it so damn unfair. I'd worked out a long time ago that with my genetic makeup, smoking was the trigger that allowed cancer to develop. All the relatives who died young of cancer were smokers, and the relatives who never smoked tended to live to a ripe old age. So I never started smoking, feeling smug that I'd removed that catalyst that was gonna kill me.
Today I'm fine. Cancer's no biggie today. Not sure tomorrow will be such a good day, and the day after is anyone's guess. In the books I've read, they talk about the emotional roller coaster you ride when you have cancer, but this beats almost anything I've been through before. And this is just the beginning of the journey.
I've found some great sources of information from charities such as the Bone Cancer Research Trust. Their website told me all I needed to know about chondrosarcoma, all backed up with references to the academic journals, which is great for a geek like me and empowered me to start the fight against this disease, and so the emotional rollercoaster is at a flat point at the moment. At the moment I feel like I am in charge of this battle, and with the help of other people, I can win this.