Hi everybody. My brother Andy was diagnoised with cancer in the jaw bone last December 2009 after a being referred by his dentist following a check up. He was operated on in Feb 2010 where surgeons performed a 12 hour procedure to remove the affected bone in his jaw and replace it with bone from his hip. They also removed all his teeth, lymph glands. One year on he is making slow slow progress and has developed complications. He is further hampered by being registered blind, has hearing aids in both ears and been recently widowed so is at a really low low low ebb. I am looking for some advice, answers and guidance to try and give him some much needed encouragement to fight the good fight.
The complications are that his tongue is now swollen at one side in the back of his mouth. It is restricting his breathing, eating, drinking and speech. He is still attached each night to a feeding station where he gets this awful but necessary gloop fed into his stomach. His hip wound has not healed and still leaks. He had given up smoking for a few years before being diagnosed but has started back again last summer.
On the positive side he is alive, hasn't lost any weight and independent to a degree in his own home.
His consultant has examined hime regularly since the operation and since his tongue became swollen last November is baffled as to the cause and despite examinations and x-rays they say they don't know why. His consultant has told him he is very lucky to be alive but if he wants they will open him back up and see if there is anything else there. They obviously say there is no guarantee of finding anything or making any difference and waiting on Andy to tell them his decision. He is baffled why nobody can tell hime whats wrong. He doen't fear the knife again. After the first opertion what little sight he had has gotten worse as has his hearing so he is wary of another operation and further deteriorations but clearly confused by this lack of direction / guidance. Can he get a second opinion, has anybody else been through this scenario, can anyone offer advice ?
Sorry to have gushed out like a burst haggis !!

How lucky Andy is to have you as his eyes. Well done to you.
I'm sorry I can't offer any advice but just want to say I'm sorry you both have to go through all of this stuff. Someone will be along soon with suggestions, ideas and experiences although I don't know that I've read of this situation before. You can bet your boots that someone will have some words of comfort/advice for you both. The only advice I would have is for Andy to get off the fags but I know that's easier said than done.
I wish you and Andy all the best
Cheers from Down Under
Deborah

Hello Andy

Sorry to hear about your brother's problems. If the tongue swelling has been there since the surgery and not getting worse and the surgeon doesn't think it needs further investigation (unless your brother wishes a surgical 'look-see'), I would be inclined to wait and not do anything. It is most probably a lymphoedema causing the swelling. I am not sure what techniques there might be to assist with reducing that in the tongue.

The focus should be on finding ways to manage the swallowing/breathing problems it is causing e.g. head posture and easy-to-swallow foods if the basic swallowing ability is intact. Please check with the speech & language therapist and/or dietician. Most times, these swellings improve somewhat with time. Things will feel better once the hip heals. When there are many things wrong at the same time, it does gett difficult to cope and so your support (and others) is really important for your brother. You are doing a great job by being there for him.

Best wishes

Vinod

I don;t have any advice but just wanted to send you and your brother a "hug" from the US M