My 77 year old husband had parts of his tongue, gum,floor of the mouth and all lymph nodes on same side of neck removed almost three years ago. He was on a feeding tube for nine months during which time he gradually began eating soft foods. I do not recall the medical term for the procedure, but much of his left lower arm tissue was removed and placed in the mouth to replace parts that were cancerous. A skin graft was taken from upper thigh to place over arm to enable it to heal properly.

If it were not for Boost Plus nutritional drink,I think he would have lost even more weight than he has. The problem he has been having for quite some time is using the tongue to position food to swallow. He eats very slowly and now eats very little, if any, meat.
Also, because of the lymph nodes having to be removed during the surgery, his neck and left side of face swells during sleep.

I would be very appreciative of anyone who would share their experiences from this same surgery. Thank you

Hello bj Welcome to this message board and I am sorry to hear of your husband's problems. You will find that lots of people on here have gone through the same operation as your husband and I am one of them. It is very difficult trying to eat with little help from the tongue, or what's left of the original tongue. I have to have all my food put through a liquidiser but can't tolerate meat, other than a small amount of chicken. Fish is o.k. but meat is too fibrous and sticks to the roof of my mouth. I have resigned myself to always having 'mushy' food so long as I am getting all the right stuff in it. I do try things like a small amount of sponge pudding with lots of custard but soon get tired of all the hard work it takes to get it down, so give it up after a few spoonsful!

As for the swelling problem - anyone who has had a radical neck dissection (lymph nodes removed) will experience the swelling as you describe. The only thing that works for me is to be propped up with lots of pillows at night, but it doesn't make for a comfortable night's sleep! Gentle massage in the morning helps to move the fluid a bit, as does a few neck exercises in the shower. Hopefully other folk will give you their tips which work for them. That's the good thing about this web site - we can all share our experiences and help each other. It really is a God send. Good luck and keep in touch. Regards B.

Bj sorry to hear about your husband and his ongoing problems.

I have the swelling of my left side of my jaw at the end of day and first thing in the morning, the radiation burn which was retreating returns temporarily and swelling occurs. I found gentle massage with the cream I have been prescribed to put on the sacr calms things downs and helps me through the night.

Hi, I have the same problem, I sleep propped up with pillows, and am like hell for the first couple of hours, if my nose runs like a tap, things are much better, but still feel as though I have been hit on the side of the head with a cricket bat every morning. Big Bear Healing Hugs

I had a radical neck dissection RHS. All parts of my neck were irradiated inc tongue and throat. The swelling is worse in the morning and seems to ease 'reduce in the day - the effects of gravity?
Side effects I can take and mentally it's easier to overcome them than the cancer. Your hubby seems to be doing v well all things considered.

Hi Tony, I finished my radio 23/11/04. Day after you. I had Ca larynx with lymph nodes in neck diagnosed as secondaries before primary was found. Took from Feb04 til Oct04 to make them listen!! I had no surgery just 30 sessions of radio with chemo. I am told all the tumour has gone! Feel like its a waiting game til it comesback tho'!
Have you only just found this web site? It's a mine of information! and support.
Please don't correct my grammar or spelling Sir it's the typing I need to improve!!
Kind regards,
Sue
(Just joking as I saw you are an ex teacher!)
(Think the radiotherapy has affected my humour)

Hi Sue - I replied to your John Diamond post.

I feel my neck tumour was too advanced for just radiotherapy - cut it all out seemed to be the order of the day. I didn't realise how much was going to be cut out until I woke up after the surgery.

Sure is a fantastic site

Hi BJ, Welocme to the RDOC message boards you wil find it VERY useful
November I had mouth & neck operation and the result of the Radiotherapy prceeding left me with only a part of my tongue
My main food is everything minced up using somekind of sauce but NOT Gravy as it taste to me like I am eating pure salt!
I use a Teaspoon to shovel my gruel down my throat use one sponful to push down the next!
I think really it is trial and error but the most embarressing think for me it someone to say you have food on your lip as I dont know and obviously cannot just lick it off

My fav sweeet is ice cream and loved dunked Custard Creams


Paul

This message has been edited. Last edited by: Paul,

Hi everyone,

I have a friend (who is not on the internet) who has had surgery and radiotherapy for mouth cancer about two years ago. He had a temporary PEG tube, but insisted it be removed. He said the smell of the food coming up from his stomach made him nauseas.
He has to drink many bottles of water each day because his salivary glands were destroyed by the radiation. He wakes every hour because his mouth is so dry and has to use more water and artificial saliva. He has few useable teeth and has lost more than half of his tongue, and had a bone graft on his jaw.
He can only eat pureed or custard-like foods. Anything stringy or acidic is out. He eats fairly large quantities of biscuits (dunked in tea to make them soft). His mouth is raw and the scar-tissue is tightening so that the opening of his mouth is becoming restricted. He has been told he will have to wait to have surgery to free it up a bit. He also gets mouth and throat thrush (Candida) infections on a fairly regular basis.
He lives alone and is becoming quite depressed (he is on anti-depressants).

Sorry this is so long - but can anyone suggest tips or hints to make his eating experience more pleasant? Also, has Paul's story been up-dated since the third part? (I think reading Paul's story would be helpful to him).

Hi Robin,
My name is Ananth " the Immortal" in our langauge Hindi ( quite ironical!! )and even my birth sign is Cancer and I have had the experience of seeing both events very closely. You could read my story in the survior stories column. I have been on peg feed for the past five years and now have become so used to it that it does not bother me any more. I do everything under the sun and lead a very normal life. I work out a great deal at the gym and keep relationships with people who are always positive in their way of thinking. I do imagine your friend could get out of his depression mode if he accepts the fact that what has happened cannot be reversed and that he should make life as wonderful and liveable as possible.
I honestly do not know if I am making sense but do hope by going through my story, it will inspire your friend to get on with life as normally as possible.
With kind regards,
Ananth

Hello, I can recomend rice for your friend, I lived on it for the first year, from rice cooked with water, then one cup of rice for 2 litres of milk, with a little sugar and rose water, then later adding an egg. then I moved onto courgettes which are easy to eat, meat was out of the question for a long time, even mashed potatoes as they were like trying to eat sand, home made vegatable soups etc all very bland. Two years on not up to a curry yet.
Big Bear Healing Hugs Garance.