quote:

I have an extremely hard neck and pain in the back of my head similer to sciatica i would imagine, and my doctors keep telling me to be patient but to be honest i am fed up being patient. The only drugs i am taking are ordinary painkillers but nothing prescribed

Phil the pain you have sounds similar to mine and is generally attributed to radiation fibrosis. For the pain I take Solpadol, but prescription Solpadol. Chemist cocodamol only has 8mg of codeine, but prescription Solpadol can have up to 32mg so its worth asking at the docs for it. I also take Ibuprofen in between.

FWIW I have had the pain on and off since radiotherapy and some of it almost seems like flare ups of pain for weeks or months then it diasppears for several months at a time.

I have read of the 'woody' hard neck many times on the ACOR listserv head and neck cancer list. Some members there say it's like knocking wood. I'd say mine was firm rather than woody but this must depend on how much node removal you have. You've been through a lot so it sounds as if you have the woody neck.

Hi Phil,
I had a radical neck section some 10 months ago, followed by radiotherapy (right side of my neck) and chemotherapy (cisplatin). Here are some observations which may be of assistance:

wooden neck: me too! I'm getting physiotherapy for this and I have various exercises (such as rubbing E45 into the vicinity of my scar, playing percussion on the same area, and some interesting stretches.) I can almost look over my left shoulder (the section was on my right neck) without too much pain and discomfort. I would probably say ouch, if I had to stop suddenly. When driving has been seatbelt passes over or very close to the southern end of the scar.

painkillers: I am only now just coming off morphine -- hopefully I should be clean as of the middle of next week. I still have some pain which the tablets are not addressing and for this the doctors have prescribed oramorf (liquid morphine sulphate). Mind you, it does bung you up like crazy, so solpadol, which I have also taken, is probably a better bet, if you can stand it.

Saliva: if you have a persistently dry mouth, forget the proprietary gums and gel. The advice of my (radiotherapy oncology) doctor was that sugarfree chewing gum does the job just as well. I can testify to this. (and I don't own shares in Wrigleys!)

Getting better: it does take a long time. six months to a year and maybe longer after being released from hospital. it has been six months for me so far and I still don't feel fully fit and able to face work again. I realise that that fateful day will come in the next few months. fortunately I have had insurance for the mortgage and my firm has a long term disability payments scheme. Not that the buggers have been in touch since I went sick, kind of makes you wonder why we do it!

best regards
Robert WT