Hi All, i am now 2 years remission. When i asked the oncologist what tge odds of a cure are now he just said the cgances if it coming back has now nose dived. I prractically skipped out of the hospital. I remember the ezrly days of treatment and recovery and wanted to say it does get easier on the way to your 'new nirmal' Thought id share what my new normal is by sharing wgst ive eaten today, a porridge, soup, yoghurt, packet of onion rings, a chocolate eclair, 6 pieces of scampi and an ensure.  I still need to supplement my diet with ensure ti nake sure i keep weight on and get the nutrients too. The 6 pieces of scampi still took me about 45 mins to eat! Food is akways cold way before i finish eating as i can onky swallow tiny amounts still. It's all about the texture. Ive never been able to swallow meat but xan get a sausage roll down, naybe because its soft abs one coukd argue not really meat! My favourite now is smoked salmon, only tyoe i can eat. I still have a fairly small repetoire of food and get excited to find something else i can eat.   I have a lot of scar tissue at the back of my tongue from the radio which nothing can be done about. Lifes good on my new normal, ive had so many holidays as soon as i felt good enough. Never going back to how i ate pre cancer is a small price to pay for the joy of being cancer free....it has a goid bonus too. My figure is slim but not too skinny, back to my bikini days even though it looks like ive 2 belly buttons from the peg. People tell me its the best ive looked in years.....there are upsides:) Wishing you all good luck in your recovery.....hang on in there in any dark hours.....my mantra always was ''this time will pass'x   ps i had left tonsil cancer primary and 3 lymph nodes secondary, 35 radio sessions, chemo and another intravenous drug that resulted in horrendous facial scabbing......onwards and upwards to you all.......Kathleen xx

Hi Kathleen. Thanks very much for the 2 year update. Sounds briiliant. The bikini bod is a great upside.

I certainly am a better weight and normal BMI. The second belly button is disappointing tho. It was never mentioned when I was referred for a PEG and which, to be honest, I only really need for a particularly bad week. Still.. a small sacrifice when faced with  terrible possibilities. 

Interesting to read about your diet. A few people have mentioned getting accustomed to ‘the new me’ food wise. That is a bit disconcerting as I had hoped to get back to the ‘old me’ taste wise. So many things I once enjoyed are now off the menu. Not all bad I guess as less faddy and less inclined to eat empty calories. Eating to live rather than living to eat.   

I know I am a better weight but just need to get moving to get in shape. 

I gather that 18 month - 2 year post treatment  is the make or break point. I was told after that time reoccurrence is extremely rare and you are effectively out of the woods. 

Well done you! 

Thanks again for the positive vibes. I wish you every success for the future. 

Paul x 

Hi. I have just stumbled on your elite club for special members only lol. May i join.? Joking aside i have just been diagnosed with tonsil cancer and am petrified and just getting ready for an MDT to decide my fate. I am also an ex chemotherapy nurse. This doesnt help actually and makes the fear worse (i think). Any help or support would be great and I offer the same in return x 

Hi Jayne

Sorry to hear that you too have fell foul to this dreadful disease. Scary stuff! But please be reassured that the prognosis is very good. I hope that the associated tests, diagnosis and prescribed treatment leads to an early and succesful treatment. The ‘full monty’ of extensive treatment is horrible but hopefully if your disease is limited then you should quickly achieve cure with flying colours. 

Best of luck in the coming weeks. 

Lots of great info and advice on here including associated blogs.

Maybe best not to overthink things till you see the lie of the land once the diagnostitions have determined what is going on. 

All the best. 

Paul

Hi. Thanks for replying to my post, glad to hear all os going reasonably well for you (stupid thing to say in the circumstances). My MDT is on the 28th. Ive got an MRI and CT tomorrow. Will let you know how it goes. Are you a jane as well ?

Thank you Paul. Good advice about the overthinking. Its the waiting and not knowing how my scans are going to pan out thats doing my head in lol. Fingers crossed

 Jayne

Hi, 

I'm so sorry to hear what you are going through. Do you mind if I ask what your tonsils cancer looked like? Could you see it just by looking at your throat? I am really suffering with a sore throat/ neck and ear pain. As well as feeling generally unwell. It's been going on for 4 months and I just want answers. The hospital seem to be taking ages and I'm worried. 

Hi Jayne welcome to the club no one want to join. This is Hazel I am now14 month post radiotherapy for tonsil cancer with several lymph nodes. Got the all clear at the moment in January this year. Tell m d t meeting sure u know this take someone with u to take notes your mind will turn to Mush. 

I have s blog detailing my experience 

www.radioactiveraz.wordpress.com  pop by and give it a look if it helps. I am doing ok out in Spain st min just got in from riding my bike so life does go on it’s jyst the rocky road getting there. Send me a friend request if u want to chats 

Hazel good luck with m d t I had 9 people in mine freaked me out st first x

Thank you for that hazel. Excellent news for you !!! Its nice to hear that. Lucky you out in spain. Im taking my partner with me to MDT cos my heads already mush. Sent a friend request. Will keep you updated

Jayne