Hi 

ive been through exactly the same as you and all I can say is things do get easier but it will take time. I had radiotherapy on top of my neck dissection which caused severe burning so I have a very stiff and painful neck all the time. My taste is ok but things are different and some sweet things are just too horrible to eat now, like chocolate yuk! ( keeps me slim though!) my mouth does get sore quite a bit, depending on the food I eat so I have to manage that sensibly and brush my teeth well with Duraphat toothpaste on prescription. I'll never be the same but I have adapted well and know my new diet and limitations and my consultant is very pleased with me. Take care kind regards Carol

Hi Carol, 

I finished my 33 treatments of radiotherapy 3 weeks ago.  Thankfully my skin survived ok.  It only started to break out the last week and thankfully has recovered now.  The worst side effect for me so far is not being able to eat.  My mouth has been very swollen inside with ulcers so i havent been able to eat food since about my 4th week of treatment.  I have my appetite back but its still to painful to eat (i have tried and suffered).  I keep getting so frustrated about it because i love food.  Did you have this problem?  How long did it take before you were able to eat again?  The pain in my neck isnt too bad except in the mornings but it is very stiff.  I'm still on a lot of painkillers so thats maybe keeping the neck pain at ease.

Ruth

Hi Ruth

It's lovely to hear from you! Things get better with time, I finished my treatment at the end of May 2014 and was eating soft food by August, loosing my feeding tube in September. I started with scrambled eggs.   I managed a small Christmas diner but very slowly and without the grainy meat as it did,and still does get lodged in my throat due to my lack of saliva. Some foods make my mouth sore so I avoid ( fruit, sweet, fizz, chocolate) savoury tastes better for me but it's much weaker than it used to be. Don't use a hard toothbrush and make sure you only use prescribed " Duraphat " toothpaste as ordinary toothpaste will make it more sore. My neck is always stiff  and rubbish in the mornings too. Keep going you've done the hard part, now it's time for getting better, and it does every day. Always here for any worries take care Carol 

Hi Ruth 

how are you feeling now 

best wishes 

carol 

Hi Carol, 

i'm ok. Still on a liquid diet. I've tried to eat soup but it has to be creamy. Anything sort of grainy I struggle to swallow.  It just feels like it's getting caught in my throat. I can manage to eat those teddy bear crisps and I've tried some jelly babies and shortbread too! I can manage them ok as long as I have water or something to drink after.  The radiotherapy did more damage than they thought and I have quite a lot of scar tissue on the good side of my tongue and they think in my throat. I'm due to have an MRI soon so they can see what is now normal.  I'm still struggling with the tiredness. It had been getting better but the last few weeks it seems to have increased a bit again.  I'm seeing a speech therapist and she's happy with my progress but she'll keep seeing me til I can eat properly. I've been referred back to physio again too for my neck. The stiffness has eased slightly but it is quite bad in the mornings. My saliva has dried up now too. I was fine all through treatment then it started to dry out about 4 weeks ago.  I'm back with my dentist for the first time on Monday.  I was due to go before but was still having a lot of pain trying to open my mouth so they pushed it back til now.  I've stopped losing so much weight too which is good. I was under a dietician during my treatment in Belfast and for six weeks after then they referred me back to my local clinic but I'm still waiting to see them but I haven't lost much over the last few weeks which is good. Thankfully I wasn't skinny to begin with so could afford to lose the weight although I'm sure I could have found a better way than this to do it!! My main aim is still to eat some sort of Christmas dinner. Mum keeps trying me with different foods. She says it's like weaning me all over again so I have 5 weeks to get there!

Im still off work at the minute. I had a meeting with my boss yesterday and they've offered me to go back one day a week on desk duty in the new year so I have to see what the docs think about that then decide if I'm ready for it.

Anyway, I think that's about enough out of me so far. How are you doing?

Ruth x

Hi Ruth

its so lovely to have your reply. It sounds as though you are going through all the things I've experienced. I still struggle to eat without a drink  and food  like grainy meat or bread still gets lodged in my throat if I forget what I'm doing. This can be embarrassing if I have to cough it up again but thankfully I've been ok and sensible if we eat out. On the work front I was off for 1 whole year so don't feel guilty about that. Going back one day a week is good.  I only do 4 now instead of 5 days as I get tired so much easier now. I'm due to see my consultant tomorrow for my three month check up so wish me luck!  Keep in touch and are you on face book? 

Oh and by the way , get the pneumonia and flu jab to be safe. My GP Insisted I had both. The pneumonia is only one,for life. 

My best wishes 

carol 

Hi I had a partial glossectomy in 2017 at a London hosp. Straight after my tongue where it was done was extremely painful and very dry. It has stayed that way all along. I was told it was probably nerve damage, my tongue is still numb, it's all lumpy where the surgeon gouged it out and it was in the clamp. Now after all the years the lumpy part and the lining to my tongue has gone rough and burns. I also have a geographic tongue, always have had. The consultant didn't like me saying it was nerve damage, he left after 3 months then another consultant confirmed it was nerve damage but we went into lockdown. It's 5 years ago but at beginning of pandemic I got a lump feeling in my throat. My local hospital have done lots of scans and tests cos the lump sensation is still there but the can't find anything wrong. To me this is a dreadful operation as I have not had a good outcome so now I have to try and get along with it. I am 72. My saliva is now like glue most of the time. I use dry mouth meds ice etc., Eating is a nightmare

Hi 

I had partial glossectomy with neck dissection on 14 th march 2022. I can home after  12 days in hospital. I have been so lucky just found out this week don't need any further treatment.

Can I ask how long it took for tracky hole and skin graft to heal?

Also how long till eating normal food, I'm on pureed food at the moment?

Hi !

congratulations on your successful op. I went through the same on 16th June 2021 . A positive outlook is the best medicine . I used soft foods for 2 weeks post op and returning home , and have slowly tried other food .There ARE limitations , however we are alive !

My scars (skin graft etc ) are healing really well - took about 6 months before they felt less uncomfortable and me able to

look and touch them .

you are not alone . I'm now10 months post surgery and doing fine .

keep strong 

Amanda 

Hi 

Thanks for your reply. My skin graft like you I can't really look at at the moment.

Can I ask what type of food you can eat and what you can't.

I'm hoping that once tracky hole heals it will be easier no pressing the button for talking eating and drinking

Amanda

I promise you that you will adapt and it will get easier . 
i find things like rice hard to eat as it gets trapped in my skin flap under tongue . 
i eat a lot slower due to lack of sensation on the one side of my mouth , and can't talk whilst eating which isn't a bad thing !

keep strong and positive , it's a bit rubbish to start with , but we are lucky on have survived a cancer that has been removed by surgery alone 

I promise you that you will adapt and it will get easier . 
i find things like rice hard to eat as it gets trapped in my skin flap under tongue . 
i eat a lot slower due to lack of sensation on the one side of my mouth , and can't talk whilst eating which isn't a bad thing !

keep strong and positive , it's a bit rubbish to start with , but we are lucky on have survived a cancer that has been removed by surgery alone 

Thank you so much for the information

I'm still in shock at how quick it all happened to me dentist Feb and op 14th march  and I agree we are do so lucky didn't need any further treatment.

Thank you again