Cancer Chat online community
I've got a Ewings Sarcoma in my pelvis and after various attempts of treatment and some major surgery, I have been advised that the best way of getting rid of this is to have my whole left leg amputated. I appreciate that this is a sensitive subject but i'm feeling very scared about the prospect of life without my left leg and can't comprehend the practicalities of life after the surgery and would be extremely grateful to hear from anyone who may have had a similar experience and wouldn't mind talking about their experiences.
I cannot help you very much but my grandfather had his leg amputated (because of diabetes) but it was before I was born. My mother told me about it and it was very distressing at the time. However, he got a false leg and managed to walk OK until he became blind (diabetes again). This was a long time ago and very nasty thing to happen. However, he really did manage very well until he became blind and I remember sitting on his knee and saying his leg was really hard so he explained to me what had happened. By that time he was blind as well and never saw me or my brother or sister and he died when I was about 5.
There is a boy of about 17 in the village where my Mum lives and he has the same thing as you (cancer) and had to have his leg off. It is very sad. But if you can cope with such a terrible thing then try and go for it and I wish you well. I am sorry I cannot help you more but I think you will adjust to it.
Hello, My Name is Ruth, Im 16 and HAD Ewings sarcoma
I was diagnosed when i was 12 and had very intensive chemotherapy and very rare limb saving surgery (was the 5th in the world to have it done) this worked as i was in remission for over a year then i relapsed...
my cancer is in my leg and they advised an amputation to largely improve my survival rate and so that i would have a lower chance of it coming back in the future etc, however i had to make the choice, that was the hard part, what if i couldnt do this and that? my quality of life would be shot! so many thoughts came to my head! however in the end i made a decision i decided i would rather be alive and have a decreased quality of life than not be alive at all, and i had it done over a year ago now, it was an above knee amputation, i now have a prostetic and recently with my determination came off walkin aid long before i should have which is brilliant so now i walk with nothing, no one even notices at school, the only thing i have is a limp which if anyone asks you can say what you want, i just say i had cancer in my leg. I can do nearly everything (still learning how to run) and i remain positive and optimistic, the physio is great and there brilliant people who will help you accomplish alot! before my amputation i went to a amputation clinic where i was going to be doing my physio if i had it done, why dont you ask your doctor if you can do this? This also helps as you can see your physio before you have the amputation and he/she can help with any questions!
Im not going to advise you or persuade you or influence you because i dont want you to have it done and then regret it, its your choice and no one can help with your decision, you need to make it, but im here if you need me with any questions or advice that your wanting! You can search prostetic and amputations on google to find out alot also! but i believe with determination if you decide to have it done you can do this, im not going to lie its hard and its a long process but you can do it!!
What a terrible choice to make. What would you say if you were advising anyone? Live your life with one leg or to die with two. No choice. And how difficult is it. Well your'e on a computer, so I assume you don't live in a third world country where it's not easy to get aids for the disabled. Having said that, I do understand that terrible choice for you, but really there is no choice.
The Disability Discrimination Act has meant that most buildings are accessible to disabled people, as are buses (which can lower their platforms). I don't know where you live, but if it's in London, London Transport publishes a guide for disabled people to enable them to travel most comfortably ie which train stations have lifts, stairs, etc. And have a look at the Disability Living Foundation's aids for people. You'd be surprised what's available
But my best example of a person with one leg's ability to function was Brian. He died recently of something totally unrelated to losing his leg. He was 72 years old, lived alone in a basement flat and used a manual wheelchair or elbow crutches. He cooked for me when I was unable to cook for myself (me with 2 legs), and took care of himself, even though help was offered to him on many occasions.
So functioning with one leg is not as easy as with two obviously, but determination is a strange thing,and I saw that in Brian.
I have ewings sarcoma also but ive just been diagnosed; i havent even started treatment yet, just tests etc so far.
Anyway i can understand your fear of losing your leg even though its much more real for you, of course.
Then again i know 1 person in a wheelchair and 1 person who had his lower leg amputated after an accident.
They explained that after a period of grieving they didnt feel limited anymore at all.
Of course you wont be the fastest runner or anything but they can do most things we can too.
So.. maybe this is not what you want to hear. And im NOT saying that its not a terrible thing to lose your leg
But i thought i would just tell you what i know.