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Cancerbro - My story of surviving osteosarcoma and advice to anyone starting out as an amputee
Jboive Bone Cancer
Posted on Sept. 3, 2018, 7:01 a.m.
My story of surviving osteosarcoma and advice to anyone starting out as an amputee
So, yes here goes my intro! Got diagnosed with bone cancer (Osteosarcoma) when I was 13 years of age. It had progressed quite far since it took us a while before I did actually see a doctor. My main symptoms where a sore spot just behind the knee cap on my right knee and I was tired — really tired all the time. So, it had more or less dissolved most of the bone and the doc said I was lucky not to break it and of course it had spread into the flesh. Amputation, above the knee, was the only possible solution at the time and the doctors gave me 50/50 to survive even after amputation. It’s been more then 30 years now and I’m still here. =) Didn’t do any chemo but had Interferon injections daily for the first five years. As you can imagine loosing a leg, especially at this at this young age, was quite an ordeal. Thankfully my parents where strong and pushed me to overcome any obstacles. First of all I never stayed in a wheelchair more than a couple of days and that’s my best advice to anyone on a similar situation – get up on your leg ASAP! Don’t get stuck in a wheelchair if you can help it. If you have on healthy leg left – use it! I have and still are, as I will tell you more about in a bit. So, speaking of pushing – I rode a bicycle two weeks after I had my surgery. Naturally without having a prosthetic as it’s mostly in the way. Not only that, but I managed to crash and of course the stitches broke. The doctors didn’t quite believe me when I tried explaining what had happened… I also received an invite from the Swedish National Team to goto on of their tryouts as I was a pretty decent skier before the cancer. Naturally I failed badly! I barely made the lift and could only to right turns (as you normally on keep pressure on the downhill ski). This was NOT how I thought it would be and didn’t ski any more for a couple of years – until my father forced me to join them in the Swedish alps. After an hour I could ski again pretty decently and did another tryout with the Swedish National Team eventually and got accepted! Have been doing a fair bit of competitions internationally and achieved pretty decent results and have a bunch of medals in a cupboard somewhere… =) Had a bad motorcycle accident 15 years ago and broke my back in three places, crushed my pelvis and so on – so my pro skiing days are over as I’m a shadow of my former self – but I still love it and ski whenever I can: Anyway, back to the beginning of my “career” as an amputee: At 13 years of age I did not appreciate people starring at me so to try and avoid that I used a prosthetic the first couple of years. Not because I think its better, just to avoid the unwanted attention. As soon as I got home it would come of. If I had my knee left I would most likely use a prosthetic but it’s not worth it, in my opinion, if you don’t. I see in the community that a lot of people think it’s a failure if you don’t use a prosthetic and a lot of people is taking extreme measure to reach mediocre results. My advice to you if you’re struggling – don’t worry so much about it do what’s best for you. I’ve used crutches for more than 30 years and will outperform any RAK I’ve seen. Yes, you get your hands tied up slightly but there’s ways around that 9/10 times. The liberty of being able to walk for miles, hike in the hills and don’t having any issues with sockets that doesn’t fit, problems with sweat and rashes, more than makes up for it. But as always- YMMV. At 16 I was the first person in Sweden to take a drivers license for motorcycle with only one leg. Thankfully my late father was a bit of an inventor and help my rebuild my first two motorcycles so I could use the rear brake – but that was mainly for show and I never used it when riding. It was only there for the legal requirements. The other bikes I’ve had I haven’t bothered converting those and I’ve never had any problems because of lack of rear brakes. 😉 My stunting days are over since my accident (witch had nothing to do with stunting/speeding BTW 😉 I still like to ride with an active style but not so extreme like I used to: So, do I have any limitations? No, not really. I still like to do MTB with my kids (use SPD pedals and shoe) and I’ve tried Skydiving/Bungyjumping etc etc. The only thing I haven’t been able to do properly, yet, is windsurfing standing up and rollerblading – but I haven’t given up on that just yet. My best advice to anyone starting out as an amputee is: – Most of the limitations are in your head. – If your body is healthy, use it. I see far too many people getting “comfortable” in their disability and as such restricting themselves in their abilities. – Don’t feel as a failure if you don’t use a prosthetic. – Don’t use a wheelchair – ever.