This is my first post on this forum so Hello.

I'll try to keep the background brief. My MIL has tongue cancer - she is a non smoker and non drinker and we suspect she got it from her workplace. She is 68 years old.

She had her first op on 28th December to remove the tumours in her neck and 1/3 of her tongue removed and reconstruct with a flap from the veins in her left arm. This failed after 5 days. She has now had 4 operations, used both the right and left arm veins and all have failed. Her blood keeps clotting and they don't know the reason why.

Tomorrow she has her 5th operation to sew down whats left of her tongue into the base of her mouth to fill the gap and also to insert a PEG tube. This will leave her without speech and nil by mouth.

She starts 20 sessions of radiotherapy on 28th January.

Can anyone advise what sort of quality of life she will have with PEG tube and no speech? Also any ideas why the reconstructive work kept failing because of blood clots?

Thanks for any help anyone can offer. We thought we were fighting cancer but now all these extras have been added into the equation.

If your asking Quality vs Quantity, only she can answer that question. BUT, in my opinion, hang on to life at all costs and fight with all your power, this disease. Speech will return, and as for PEG, I have had my gastrostomy for 3 years, I cannot even take a sip of water, everything goes into the now, G-tube (G-tube is much like a foley catheter it can be changed in 2 minutes). I change my own G-tube every six months.
Additionally, her PEG may also be temporary, most PEGs are removed after a few months and people start eating again. I am exception to the rule with so much damage to the epiglotis I am permanently dysphagic.
Darrell

I forget to mention, that as long as the vocal cords vibrate, there is speech. It is not even in the picture as a factor to quality of life.
Darrell

I can't really give a definitive answer to someone else's quality of life definition. It seems as we all embark on this journey, we quickly adjust to whatever we have to work with. As is the case with Darrell, he has learned through his somewhat extended journey that life is the measure of quality of life. I catch myself reminiscing what things were "before" and I migrate towards Darrell's perspective that life in general will always be whatever you want to make of it.

For your MIL, CLF, it will be some time before she will know what any sense of "normal" will be and she is really at the beginning a very long and difficult process. Fortunately, you have come to a place where many have been down this same road. The "fight" ahead, unfortunately will be much more than just the big C. Try to work with her at keeping track of the worst issues first and eventually the list will be smaller.

Best wishes for your MIL and entire family.

Ed

Dear ClJ, you hae posed one of the toughest questions there is to answer. I read it last night and have been thinking ever since what an appropriate answer might be. I think my attitude-and my husband's- is "To thine own self be true". Only she can be the judge of what an acceptable quality of life is to her. The most important thing is that her family supports whatever decision she makes. Amy

AMY and JOHN, My sentiments exactly, hope your coping as best you can in difficult times.

We are indeed- John coping better than I on many days, while I continually marvel at his courage and determination to make the best of this. Thanks, Mark, Amy

Once you are released from the critical care doctors, I hope your family physician will care enough to follow up on your nutrition. Thatbwill be one of the things to decide your mortality after surgery leaving you with a peg tube.
If you regain speech you are very lucky. If you ever lose the g-tube and are able to eat, you are very lucky.
If you can even sip on soups or drinks you are very lucky. It is hard to fing a GI doctor that will take you so if you have a good one hang on to them at all costs.