Hi Ruth

Goodness, so sorry to hear that you had a panic attack! I hope you are ok now and recovering well? 

I'm sure some members will be along shortly to offer some support and advice. Regarding meal ideas, you could pop a post into our Ask the nurses topic area or feel free to email them using this form. They are also available Monday to Friday from 9am to 5pm on freephone 0808 800 40 40.

I hope your tonsillitis is better now too!

Best wishes,

Kirsty 

Hi Ruth

You poor luv having a panic attack, I really feel for you but also really glad to hear your out of Hospital and through the surgery.  I've also had part of my tongue removed, 9mm tumour and a total neck dissection on my right side. I had chemo and seven weeks of radio therapy which burnt my neck so I scarred quite badly. my tongue was Jan 2014, neck March 2014 followed by treatment between April and end May 2014. I had a feeding tube in until September. I had check ups every 6 weeks and now it's every 3 months and all good so far. My consultant said 2.5 years after surgery is very promising. Just try and keep positive as remember , ITS GONE now,  so just try and concentrate on getter stronger feeling better . You will feel tired for a while but does get easier. My mouth is always very dry from the radiotherapy and my necks quite sore most of the time but it's fine really. The worst thing for me now is always having to wear a scarf as I can't show people my scares.   You take care and I wish you well kind regards Carol x

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

Omg your tough.....

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 there Ruth and welcome to the forum

let me introduce you to a great surviving cancer friend of mine Nicola ....she has been through the same and like me is now 2+ years post treatment for head and neck cancer

here is her post

www.cancerresearchuk.org/.../tongue-cancer-diagnosed-two-days-ago

she is an inspiration to us all

shout if you have any questions and the best oft of luck with your recovery

vatch