Throat Cancer/voicebox removal

Hi Scarlett, sorry about your mum, it's a horrible disease.

I knew a woman who had throat cancer and sawher every week. She'd let me know how she was getting on and the first thing she had done was to have all of her teeth removed and then part of her tongue.

Next her voicebox, which intially was quite frightening as she couldnt speak at all and carried a little notebook with her everywhere.

She lived for many years after all the surgery (if you're wondering about that side of it) and although she always looked very thin, she seemed happy and virtually able to cope/adjust to life without her voicebox.

I think she had speech therapy and there were alternatives offered to her which she refused, but she spoke with a sort of croaky whisper iyswim.

Hope your mum is coping and makes a good recovery ?

I had throat/thyroid cancer a couple of years ago. I didn't have my voicebox removed but it was badly damaged during surgery and I was unable to speak for a good few months. The speech and swallow therapists were wonderful and a great help.

Its extremley frustrating trying to explain yourself. It was also very annoying when people were impatient and kept trying to guess what I wanted to say!

Hi Scarlett

I work on a head and neck ward and have cared for many patients undergoing this type of surgery.

I am happy for you to PM me or speak on here. I am also on Facebook and you can find me on there (Claire Higginson - picture of me in a black top)

I can give you lots of information on what to expect, some information on what is going to happen and post op advice

My uncle had this about 15 years ago. he is still here ?

Thanks for the positive replies. We don't really do illness in our family, we tend to bury our head in the sands, but there is no getting away from this, it's happening.

Claire, I will add you if you don't mind, I need to know whats in store for her and her partner.

Thanks again.

Hi Scarlett03

You might find some useful info on www.mouthcancerfoundation.org They have a message board with a specific board for laryngectomees. It's not the fastest forum in terms of responses, but the support is superb.

KJB

Thanks KJB, I never thought there would be forums out there. Thank goodness technology.

My dad had part of his tongue removed and had to have a stoma, so could no longer speak without covering the valve that was put in to his throat. It was fairly grim to be honest (sorry to be blunt) lots of phlegm which had to come out there on to his fingers rather than up through his nose, compacted phlegm too which caused a lot of problems. However, he was able to speak again, all be it with a weaker, croakier voice than before, but well enough that we could have phone conversations (he bought himself a Amstrad hands free phone which he found easier and became very good at texting and emailing, bearing in mind this was around ten years ago). It was weird going out with him because people really did talk to the person with him rather than him, and in the early days having a one sided conversation where he mouthed answers back at me was very bizarre when in the pub! Eventually he found it easier to have a voice simulator (sounded like Stephen Hawking, but he typed words in phonetically and it spoke for him). He even managed phone calls with that too.

You might have guessed from the tense of this post that dad didn't survive his cancer, it came back and got into his lungs. I don't think I was really prepared for that, I think I saw him getting better the first time as a final thing, so whilst hoping for the best, I wish I'd been prepared for the worst.

One thing he did find helpful was aromatherapy massges on his face, which did become very swelled. It was a trial at Birmingham's QE at the time, I don't know whether it's still offered there or anywhere else, but may be benficial. We teased dad that it was just having someone's undivided attention that did him good, but the massage may well have helped as the swelling did subside somewhat.

I really hope that things go OK as they can for your mum, keep strong for her, and if you do want to PM me, please do.

Thanks for your reply Caroline ?, they aren't giving my mum the option of a valve at the moment and will re-assess in a couple of months.

What I was wondering is how long it will be until she is up and about, she is hospital for three weeks. Thing is she spends the winter in Spain and she is desperate to get back.

Dad has his operation the week after Easter, he was fit enough to go to my graduation ceremony (which meant driving about a hundred miles, going out for dinner (and eating proper food), staying in an hotel, sitting through the ceremony and driving home again) at the end of June (and had been out of hospital a few weeks before that). What caused him much more problems was the radiotherapy which he reacted very badly too, and opened up his neck wound. The doctors said that he looked like a patient from the fifties before they refined the techniques. That did knock him for a while, but he did go back to work for a while and pretty much resumed his old life, until it came back.

Dad didn't have his valve straight away, I think it was August before that was fitted because I was staying at a friend's house and he phoned me up and could talk "properly", so maybe that will be an option for your mum later, let's hope so. I hope she gets back to the warm weather very soon.

Thanks Caroline, that is very re-assuring about recovery. Unfortunately radiotherapy has done my mum more harm than good in hindsight.

I'm looking for easy ways for my mum to communicate and at the moment it seems like a wipe board. Any other ideas.

Wipe boards are one of the easiest ways to communicate. The other way of communicating that it may be useful for your mum, is to make some prompt cards. For example, with simple words like 'I'm in pain', Need the toilet, Hot, Cold, Suction etc. These will then be easy for your mum to ask for things in a hurry.

We have had patients who have had them attached together with a keyring attachement and then they are not likely to be lost.

The other thing that is useful to remember is try not to guess what your mother is writing down. It can really irritate patients, they are making the effort to write down what they want and then someone says what they want and has wasted all their effort. It may be different for your mum, just consider it!

If there is any other questions then please contact me.

I think I remember dad having a wipe board in the early days, and it was useful. He also always had a pad and pen, and now those notes I have of his are very precious just because they are in his handwriting and I can remember the conversations ( about utterly trivial things like collecting something for him!)! I did get pretty good at lip reading (or maybe we were very in tune with each other) so we did get by just "talking" to each other, but it was hard for other people to join in!

Dad found having lots of ice really helped his mouth ulcers after surgery, he ate buckets of it - might be well to be prepared!