Is there anyone out there?

1 minute read time.

FormerMember

9 Jun 2010

Hi I'm kinda new to this so here goes. My name is Donald, I'm married and have two teenage kids. A non-smoker and very moderate drinker. I've been battling tongue and mouth cancer on and off for about 20 years and have lost count of the number of operations I've had done. Up to now most have been conservative as the team of doctors have tried to be as conservative as possible to preserve my quality of life. Up to last year that is. The cancer for no particular reason spread rapidly and I had a large part of the middle of my tongue removed but got through it without my speech or eating being too effected. I then had 35 fractions of Radiotherapy which left me with the inevitable dry mouth but I thought myself that I could live with that. Unfortunately, the cancer has now shown up in my neck area and I've just finished 2 sessions of hellish chemo. This are now putting this on hold because they have discovered they can give me Radiotherapy as it's not in the same area as before. So here we go again for 35 fractions. After that??? Maybe more chemo but most likely a pretty invasive operation which will leave me with talking, eating, saliva, swallowing, etc issues. I'm looking for people who can help me get through this and anyone who may be looking for more infomation on my story if they think it would help.

Thanks for taking the time for reading this and hope to be in touch soon.

Regards Donald

KateG over 14 years ago

Hi Donald,

You have been through the mill already so I hope this latest operation will be successful. Keep blogging and let us know how you get on.

Best wishes,

KateG
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FormerMember over 14 years ago

Hi Duckie I have sent you a friend request then you will be able to PM me with any questions. My husband Laurence had adenoid cystic carcinoma of the salivary gland in 2008 unfortunatly it had also spread to lungs liver and lymph node by the time he was diagnosed, so any treatment was pallative and for pain relief. He under went a total glossectomy and neck dissection in May 08 followed by 33 sessions of RT. He cannot take anything orally but to it going into his lungs and is totally reliant on his gastro tube. This I might add does not stop him from having a pint down his tube. Of course his speech has altered, but he can still speak. Infact he is speaking at a national study day for H & N health professionals on Quality of Life issues in September. That will be quite a personal challenge for him. We do have a good quality of life and it doesn't stop us doing most things it just means that it takes a bit more forward planning. In fact we are going to Canada in August. Obviously there are things he cannot do now besides eating, like he used to play cornet in a brass band but he can't tongue any more. He also doesn't feel safe driving as he can't turn his head far enough one way, but that also is because he has a false eye that side.

Anything else you want to know just ask.

We have a website where there is pictures of Laurence after his operation and a blog of his time in hospital and since. its www.laurenceandshelley.com

All the best

Shelley
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