Apologies for introducing ourselves twice - we've also posted this under ' Tell us about life with total glossectomy, laryngectomy' but we'd like to here from anyone in a similar position who chose not to go for surgery or any thoughts, views, information anyone may have to help with our decision making.

Joy and George
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George had partial glossectomy, reconstruction, radical left neck dissection and radiotherapy (by the way, he had a PEG tube through all this - I'm surprised at how many don't - hard to see how weight or any sort of normal life can be maintained without it, especially during / after radiotherapy) for squamous cell carcinoma on left side of his tongue in 1999. I've forgotten grade/level numbers, but at the time, the prognosis was very poor. He didn't, and still doesn't, want to know the numbers. We took this, not as any sort of prediction, but as an indication of how seriously to take this - that life needed some radical changes. He had several visits to the Bristol cancer care centre, which I cannot praise highly enough and there were big changes in his attitude to life and our relationship - helped a lot by going to buddhist meditation classes. There is a huge amount to be said for Robert's Positive mental Attitude (PMA). And, of course, extra attention to diet etc - although as a non(never)-smoking, vegetarian who drank very little and grows his own organic veg, we had thought we had this covered.
Against all the odds, he was cancer-free until May this year, for which I can't be grateful enough.
However, in May, he had a new tumour removed from his tongue, with all the reconstructed flap. Then in September, another tumour removed from the remaining right side, and a week or so later, the bit of that they missed and a lump in his neck.
We were told to consider the possibility that he may need total glossectomy, laryngectomy etc and have been trying to find out about this on the net.
Yesterday, we finally had the meeting with the team (N. Staffs Hospital) to get histology & CAT scan results. Some aspects still a little hazy, as George fainted during this, so discussion ended. He has cancer on the back of his tongue and gullet (?) and, most worryingly, the neck lump was a soft tissue deposit rather than a lymph node. They are of the opinion that the time and life quality impact of the surgery would be too 'cruel' as the chances are the cancer will pop up somewhere else soon.
George had psyched himself up to facing the surgery and still feels that if we can remove the cancer that is there, he still has some hope of beating the odds again.
We would be very grateful to hear from people who have had this surgery and their quality of life afterwards and any other help anyone one can give us with facing up to all this.

Joy and George

My name is Kevin Oliver and i live in Australia and have had more than what you are going to have. I had to have my whole lower jaw removed also my complete tongue and also my voice box so as you can see it is a bit more than what you are looking at but i am not sorry to have done it as i live a full life and hardly have any spare time of my own. Since my surgery i have joined Lions International and do volunteer work with them i also do volunteer work with our Cancer Council, i also play golf twice a week and do some fishing as well.
I eat through a peg tube and will for the rest of my life and do admit i do feel down at times but that is natural. There is no reason not to have your operation as with family support you can lead a full and active life. If you want to talk to me about what you are facing my e-mail is kevinoliver@bigpond.com I wish you well in facing what lies ahead. Kevin Oliver

Thanks Kevin - that's really reassuring - more real than the dry scientific papers on Quality of Life.
George has decided to go ahead with surgery, probably on 21st. It's terrifying, of course, but we're trying to be positive, make the most of what we've got, look at what he will still be able to do, not what he won't. All part of life's adventure and all that.
We've still got a lot to learn about what to expect, how quickly he will recover (doctors don't plan a month in hospital for no reason..), ways of communicating, what you can get down a peg tube other than the baby milk stuff etc etc etc.
Thanks again for your reply - George may be in touch via email.

Love and best wishes,

Joy

Joy and George
I am sure your emotions are going haywire at the moment with what you are facing and you don't know what the outcome will be but remember that no matter what you can face what comes. If you have any questions about anything please feel free to ask and remember you two are not alone in this you have all the back up of this site from people who have been throught it and understand what you are going through. Kevin (aussie)

Thanks, Kevin.

We're trying very hard to look on it as a positive step / clean start / part of life's adventure.

The mind tends to race off in all directions, trying to look too far ahead and getting overwhelmed so we're trying to take things a step at a time.

This site has been really helpful and we met someone locally who had an almost identical op 4 years ago, which also helped, and have had talks to the nurse specialist & speech (well, more accurately communication) therapist what to expect so we're 'normalising' the whole thing a bit more.

I'm sure we'll have lots of practical problems we need help with later, but one of the hardest things at the moment is telling people what's happening, because it's so shocking for them and brings back our own initial horror. I've resorted to sending letters, even to local friends, so they can cope with the shock before choosing to speak to us about it. I suspect that coping with other people's reactions is going to be an ongoing issue.

Our children are here this weekend (Rosie's 22 and in her 1st job and Jakes 19 and at Uni) and that's helped keep things more normal. I'm trying hard not to let this disrupt their lives too much.

We're usually fiercely independent, but I recognise that I'm going to need all the support I can get over this and have a couple of friends and my sisters (who live in Greece) coming to stay in turns while George is in hospital.

So we just have to make sure we have a good day today, then it's hospital tomorrow (monday) for the PEG and the big op on tues.

There was a quote at my yoga class this week that helped - something along the lines of:

'Look well to this day, for every day well lived is a memory of a happy yesterday and a promise of happiness tomorrow'.

We're working on it.

Much love,


Joy

G'DAY JOY and GEORGE
First off i wish you all the best for the surgery in the next day or so and i will give you the motto i lived by in the hospital, if you wake up you will only get better, and the one i lived by from the start which was, never give up and never give in, Joy you have one of the hardest jobs going in this world today and that is being a carer for a person as you have to have a bright outlook for everybody not just the person you are looking after but the people from the outside as well so i give you my heartfelt best wishes. George when this is all over you will probably have some very high moments and also some very low moments but keep in mind that life is worth living and there is still so much that you can do. When this is all over if you find that they have had to take all your tongue i would suggest that you both learn sign language as it will make life so much easier for the both of you to communicate between each other. Please let me know how the operation goes and remember if there is anything you want to know please just ask and i will give you all the assistance i can.
Kevin(aussie)

Hi Joy and George,

I have been following your postings, although my treatment has been very different so I have not posted on this topic. I just want to let you know that I will also be thinking of you tommorrow, and I hope everything goes well for you. I am glad to know you have had a good weekend with your children.

I lost my mother through heart disease about nine years ago, and she was ill for years before that. My advice is to take every opportunity you can to tell your children and each other how much they mean to you. Those are special words, that I feel you will need to know you have said to them.

Hello Joy and George

My very best wishes for a succesful outcome tomorrow. I will be thinking of you.

Vinod

Kevin, Jenni, Vinod,

Thanks so much for your good wishes.

George's op went just as well as we could have hoped. Surgeons pretty sure they got all the tumour with a good margin. Taken tongue, chunk of pharynx and larynx as planned, with some (?all) bottom teeth and half the thyroid. Patched up from pectoral.
George coping really well so far - looking very serene there in SSCU bristling with tubes and stitches - I think he's so relieved to have got rid of the tumour and is concentrating hard on healing now, making the most of this 'fighting chance'. Very sleepy still, but smiling, holding my hand, writing. The nurses have commented on how calm he is and I think it's down to the meditation / Buddhist philosophy (but maybe the morphine helps too...)

We'd wondered about sign language, Kevin, and even though it would only be useful between the two of us and any deaf friends we may make, I think it could be a good idea. I've ordered a couple of books on it anyway - could help keep him amused in hospital if nothing else.

Will keep you posted,


Joy

Joy and George
I am really pleased to hear that George is doing well. He was lucky in that he knew before hand what was going to happen. I only recommended learning sign as it makes it easier for the two of you to "talk" to each other without his having to write everything down. I hope his recovery keeps going well for both of you.
Kevin Oliver

Hi Joy and George,
I'm glad to hear that the operation has gone well. Good luck for the recovery period.

Dear Joy and George,

Firstly, I sincerely hope you are both well and coping with what life has thrown at you. I will keep this note brief, as I see you went through the op in Nov 06. My husband, Mike, underwent a total glossectomy in July 2002. The shock and devastation at the diagnosis and the after affects is indescribable, but somehow you get through it. Mike (now aged 58) is back at work, doesn't eat but talks amazingly well. If you need someone to chat to and some positive feedback, please feel free to write to me at anniedoggy@hotmail.co.uk.

Best wishes

Alison Walker

Dear Joy and george
Its really amazing how support can really make things better for one. Joy I take my hats off you for the love and care you have and will be extending to george. I will always include george in my prayers for his speedy recovery and Joy for strength and patience in your caring for george...I wish you both well always