Cancer of the voicebox

Hi Haigh,

I am sorry to hear of your husbands diagnosis & his struggles. I too have voicebox cancer. I have had 95% of the tumour removed & have already had 35 rounds of RT & 2 rounds of chemo (should have been 3, but I caught an infection which meant the 3rd was not given) I am now 4 months post treatment & due to get my Petscan results on Monday.

It has been a hard ride & please be assurred that all the things you are feeling & experiencing are normal.

The daily RT visits are a grind & you become very tired. The change in mucus & the sheer amount of it becomes annoying & concerning.

You loose your appatite, despite knowing you need to keep your calories up. I lasted till week 6, before I was no longer able to swallow & I had a NG tube fitted. So all my food & drink requirements went via my nasal tube. My medication too. To be honest, once the tube was fitted it took the worry away, as I knew that I could keep up with the nutrician/hydration without worry. 

The skin on my neck became sore & blistered, but I managed to keep it under control with plenty of moisturiser. Your team will be able to advise the best type for your husband.

It is a tough 2 months, but it is do-able. I am 60 years old & managed to survive. Just follow the oncology's team instructions & keep on top of the medication.

I no longer have my NG tube, and am managing to eat small, soft meals- but it is still a work in progress, so supplement my meals with Fortisip just to keep my calorie intake up.

Take it one day at a time. You do get peaks & troughs where you never know which you will get in the day. Its perfectly normal.

I still find it almost unreal that I and my family have gone thru this - but we have & you'd be surprised just how strong you can be.

I wish you all the very best.

Yve 

Hi

i was diagnosed with cancer of the vocal cords and I underwent radiotherapy in October and completed this in November last year. It was a rough road and on week 3 I had to have a feeding tube due to weight loss, pain and I actually thought I was fading away, so did my family. I was admitted to the oncology ward on 3 separate occasions as become quite unwell at times. I actually think my family suffered more than me as they were supporting me, taking me everyday for my treatment and watching me go from an active 60 year old to a poorly, sleep 22 hours a day, not eating, crying in pain and not able to swallow. It can last several weeks once the radiotherapy has finished to even start to feel better, and it is slow but we do get there. 

My feeding tube was removed 3 weeks after treatment stopped, once I was able to eat 1800 calories a day and able to swallow soft food. 

once treatment finishes I have been seen monthly to check it’s not returned and again the oncology consultant, speech and language and nutrition dept are all still involved. 

make sure you moisturise your neck as this will go bright red and blister in time and again this is uncomfortable.

looking back I wish there was support for the people supporting the person going through this treatment, we were told to go to 2 different places for support but at the time I didn’t because I was so unwell and we didn’t get told of anywhere for my family to get support and they were the ones watching and looking after me. 

it has been just 3 months since my treatment stopped and I have this week returned to work, on reduced hours but I have made it and very proud of my family for all their help at some very difficult times. 

everything you are going through is completely normal and you should have been given a phone number for your allocated head and neck nurse, mine was amazing and phoned her on several occasions for concerns and advice. 

I wish you all the luck in the world and a speedy recovery. There is light at the end of the tunnel but it is a rough ride for all involved.