Brain Cancer

[Jules2]

I have to disagree here on the three strike rule ... rules are meant to be broken!!! I have so far broken that rule and I hope to continue breaking it. Cancer, MS and now cancer again ................ Julie

[Karen_Rose]

Hi again Carl I also had nearly all of my tongue and floor of my mouth removed and the 'flap' was taken from my thigh to make a tongue/floor of mouth. My flap of muscle is anchored permantly to become the floor of mouth. I do not have a mobile tongue any longer. During the original surgery I had some teeth damaged around my jaw where they split it to access my tongue. That is how I got necrosis - (Osteoradionecrosis) As a result I had nearly all my lower jaw/gums and teeth removed. It is a HUGE operation. As for recovery - 2 1/2 years on from the jaw and 3 1/2 years on from the tongue - I'm still trying to recover, or should I say adapt. I had 30 Hyperbaric Oxygen Treatments but my jaw bone was beyond the possibility of healing from the HBO treatments. I'm not sure yet what can be done with the dribbling for me, or my facial appearance. It is very difficult to deal with. Due to 2 neck dissections from ear to ear the skin is so tight - it pulls. Like elastic that has lost its elasticity. Hard enough trying to talk without a tongue let alone the additional difficulties. Karen

[#3]

CarlC I know just what it is like, that absence of support. Where are all the Cancer donations going? I'm afraid I'll never give another cent. I had to stay in a motel as the bare bones red-cross shack was full. It cost the earth and I got $30 refund from local hospital. As for friends, couldn't see them go for the dust (ha ha). It really is a "you are on your own mate" situation. When discharged 400 Km away I actually drove home alone, pumped full of pain relief. I have this magical car that goes like the wind and I only had to say "home please" and press my foot down. I slept most of the trip. (I'm only half kidding). It was the trip from hell when the meds started to wear off the last 100Km. take care you all jimf

[#4]

Friends? What friends? When I had cancer there seemed to be no one around except one fellow who asked is it was catching? !! I have since learned that people truly don't know how to cope and neither do they want to 'take on' the 'burden' of the illness themselves. There is something very paltry in human nature that does this and I have seen it far too often to consider it a one off. Each one of us has to carry our own burden, but it does help to have someone to talk to, surely you would think that among recent friends there would be one or two? Tch! BLAH! & Humbug!

[Karen_Rose]

Julie You are a TOWER OF STRENGTH!!! Stay strong. Karen