But what my parents weren't told and perhaps this wasn't widely known then (though I do think my GP could have been a bit more switched on) - is that genetic bilateral retinoblastoma can mean you are at higher risk of having other cancers, most probably an osteosarcoma as a teenager.
Despite this, my story follows most of those told on this site. When I was 14 (in 1989) I had pain in my knee, went backwards and forwards to my GP who said I'd strained it (interesting, as I was never good at PE!) My parents finally insisted on an x-ray but when that came back clear we thought everything was ok and went on holiday.
Two weeks later, I was racing upstairs, changed my mind, turned round and my knee gave way. After a not-so-expertly performed biopsy in my regional hospital, I was sent to the Royal Orthopaedic, Stanmore. (My local general did later admit that there was a great big shadow on my first x-ray they just hadn't seen it).
I had six courses of chemotherapy at UCH, London in a very grey and dreary adult ward. This is why I'm a fervent supporter of the Teenage Cancer Trust, a bit of colour, posters on my wall, a decent TV and other distractions would have been much appreciated.
Half way through the chemo I had a massive knee replacement at Stanmore and this has been my main problem ever since. I have been cancer-free since then (though I suppose I am at a higher risk of some sort of cancer returning in the future), but have had a few hassles with my metalwork. I needed a revision in 2001 (it had received somewhat of a battering in university) and a low grade infection has crept in which means further surgery this year.
But on the whole I haven't let any of this effect me. I gained a Law degree, Masters in Politics then landed at the BBC, where I'm now an on-line community researcher.
To anyone out there who has just been diagnosed with an osteosarcoma, you can get through it. I'm sure chemo was awful but my mind has been nice to me and I don't really remember how absolutely dreadful it was (I'm sure my parents do). I know I'll have on-going problems with my knee after all, we were never supposed to be part metal - but a dodgy knee or lousy eye sight isn't going to stop me living life to the full. I will now return to my plans for a Thelma and Louise adventure in the Rockies!
If anyone would like to contact me for any advice or support, my details are with the Bone Cancer Research Trust. Good luck everyone.
Donate now (This link opens in a new window) More about Osteosarcoma