My poor mum.

Hello all, I'm new, wish I'd found this place sooner!
I have a couple of questions I'd like to ask about my mum. She was diagnosed with mouth cancer in July of this year. She underwent surgery on the 19th August (forgive me if I don't know all the correct terminology) but it was a 12 hour operation involving removing lymph nodes ear to ear, a flap from her wrist and she lost some of her tongue.
She was very poorly and had to be taken back to theatre the following day due to a blood clot in her neck which made her head swell to unbelievable proportions. She was under for a further 6 hrs and spent a week in HDU and a further 6/7 weeks in hospital.
My main concern s at the moment are, she is still being fed via PEG and can only manage liquids,her speech is significantly poor and she is still over producing saliva which she finds difficult to swallow.
I'm worried that this won't improve and she'll be on the peg indefinitely.
A major concern is it has severely affected her short term memory which is getting worse not better. We have been told this is due to the stress of the op but could it be due to lack of oxygen when the blood clot formed in her neck?
She has just started radiotherapy and is on her 8th session. It's safe to say that she's a shell of what she was prior to the surgery and has had the most difficult time. (She's 75)

Thank you for reading, I hope I've posted in the right place, any thought are welcome.
Original Post
Hi Claire,

Your poor mum - she certainly has been through it. Luckily I have not had to have surgery so I have no experience on that front, but the blood clot sounds horrendous. I can imagine the difficulty with swallowing - I tend to have some problems, but not nearly as significant as your mum's. I have forgotten what the over production of saliva is like - a lot of us suffer from not enough - all due to radiotherapy not doing the salivary glands any good, so don't be surprised if things start to dry up. However, maybe you could borrow/ get hold of one of those suction machines (sorry, don't know the technical name for it) which purely sucks excess from the mouth and throat. The piece that sucks is hand held and can be used as and when one likes - it is by no means a fixture. Speech would not be helped by the swollen neck/throat and the swallowing problems - so many muscles must have been affected. There is such a lot going on in that part of the body. Loss of memory - I feel - but that is by no means official - can be part of the whole process; the shock, the trauma, the stress of the whole situation. Did the blood clot affect the airway? My memory was beginning to recover a bit, but then I had another, completely different, trauma in the summer and I was getting really frustrated with not being able to find something I had put down 5 seconds earlier. Two weeks in France worked wonders!

How many sessions of radiotherapy does your mum have to have?

Yes, I wish I had found this site earlier than I did. Even then I came across it accidentally having been looking for something/anything like it for some time.

Please keep in touch - you can always say anything here.

Life's a bitch - then it has puppies.
Thanks for your reply, sounds like you've been through the mill too, my sympathies. Yes, mum has been told to expect to go the other way re saliva production but since she's over producing at the moment they've said there's a hope that one will out do the other and it might not be too bad. They wouldn't let her have the suction for too long even though she choked on her own saliva the day of her discharge.
I've done a bit of reading around the affects of anaesthesia on elderly patients, can't remeber the term (ha ha) post op connive something, sounds like it's common but it's certainly not one of the side effects we were told about. Hey ho.
She's on session 9/30 ten minute blasts of radiotherapy with no ill effects as yet. She'll probably be quite poorly with it I imagine by Xmas time.
Going to be an interesting Xmas dinner soup and mousse I guess!
Hi Claire

30 sessions is a lot. I had 33 sessions plus three sessions of chemo. My mouth was sore, but not so sore that I couldn't manage to eat at all. Even then they managed to force an NG tube through my nose which was really unpleasant. Luckily it didn't last long, as it came back after the last session of chemo - no one more pleased to be sick! I found the 8 weeks post treatment were not too bad, it was after that that everything started to stiffen up. My neck became very stiff (still is). As for Christmas turkey, well forget it. Chicken and turkey are about the most difficult things to eat as it is a very dry meat. I find things have to be casseroled to death (I am on an ox tail stew at the moment - very good too). Because my throat muscles seem to have been affected swallowing is not always easy and I find that completely pureéd food and soups are not the easiest to cope with in 'polite' spoon ful mouthfuls. Mashing things on the plate is useful and easier. However, can't cope with potatoes, even if mashed with butter and cream. They seem to be the wrong texture. Take things slowly - and swallow everything twice - if you see what I mean. I can explain a bit more about this if you like. Mousse is a good idea - as are other creamy type puds from the supermarket freezer compartment. When she progresses a bit try the individual syrup/sponge puddings, with a mass of custard. They are very good and easy to swallow.

Just to add to the general complications I developed trigeminal neuralgia - very nasty. It is still there but at least the sharp stabbing/searing pains have abated for the moment.

I did wonder whether the saliva production might level itself out with the radiotherapy - it would be useful if it did.

I used to use the suction thingy on my husband and literally used it to suck the extra saliva and mucus from his mouth and throat when necessary. This was all due to MS - nothing to do with cancer.

If I can help in any way at all, please let me know. Thinking of you and your mum.

Life's a bitch - then it has puppies

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