"Pelican" throat and other things.

Ade 10 hours ago

5 replies
52 subscribers
85 views

Hi,

Tonsil cancer HPV 16 etc.

I finished treatment 29th Jan 2026 after undergoing 6 x chemo session (Cisplatin) and 30 RT sessions.

I suffered with dry mouth coupled with thick gloopy mouth slime, taste and mouth feel made me gag when i tried to eat or drink, very painful to swallow, so was on the PEG from week 3 of treatment, my neck became severely inflamed and sore, I was fatigued, nauseous lost 44lb during treatment, plus a few other ailments.

Post treatment for me has been the hardest part. I continued using the PEG for 6 weeks post treatment because any thing taken orally felt like a hot poker on the roof of my mouth and swallowing was difficult.

Through determination I am now eating and drinking with mixed results but i am NOT going to use the PEG again, hopefully that will be removed soon. My skin is now beautiful and silky smooth around my neck and shoulders and shaving takes about 30 seconds. My weight has stabilsed.

That's the good, the bad is different.

Mentally I feel I should be back to normal, physically my body is saying no, this in turn is affecting me mentally, it is a vicious cycle. Some days I wake up, feel great, get up, get dizzy, have a couple of fortisip shakes (yes i still use them to supplement) do my daily routines, 30 minutes later I am flaked out on the sofa. As a very fit 61 yo pre cancer, this is torture. I get listless and fuzzy, when talking a sentence can take twice as long as normal to come out of my mouth. I have emotional days where a just want to sob, people ask how i am and i have to walk away or blub. I feel very low at the moment.

Now i am developing a bulge under my chin hence "pelican neck" it feels firm and my neck feels tender generally. Has anyone else got this?

Got my PET scan beginning of May.

Ade

Beesuit 10 hours ago

Hi Ade

It’s called lymphoedema

Ask for a referral to your lymphoedema clinic where you’ll be shown massage techniques to sort it.
meanwhile if you look on my. blog I have a video of a very simple method that worked for me

There’s no getting away from radiation fatigue. You can’t fight it. It will get better.

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

I BLOGGED MY TREATMENT

Macmillan Support Line - 0808 808 00 00 7 days a week between 8am-8pm

RadioactiveRaz 6 hours ago

Hi Ade. It’s still early days for you although you might not think it. My oncologist said he was looking ti cure me but also apologised for taking g a year out if my life to give me many more. He did both.
Radiation fatigue you can’t fight it listen ti your body nap when needed and gentle exercise helps if onky a walk round garden don’t overdo it though. Give this article a read.

danis covered the pelican neck .

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

written by a consultant at Leeds cancer center

Hazel

Hazel aka RadioactiveRaz

My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 7years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

2 videos I’ve been involved with raising awareness of HNC and HPV cancers

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

Micky55 5 hours ago

I had 'Pelican Neck'... massage rectified it, still do it after shaving...therapeutic...I suspect feeling low was normal for most of us, it does improve with time, nearly 3 years since I finished CRT and I still have fatigue and flashback moments...sends shivers down my spine...it was a very difficult time...my speech was affected as well, loss of confidence when eating and talking...speech therapist should be able to help.

Michael

Sophie66 1 hour ago

Hi Ade. The radiation fatigue is so debilitating for a while and you think that you'll never be the same again and one day it starts to recede and things improve from then on. My husband used to nearly have to drag me around the shops when we went out and the thought of walking up a slight hill used to do me in completely, let alone having to shop for food.I used to have to sit down whenever I saw a seat. There was no enjoyment in going out at that stage. It was a very hard time. I felt so useless which made my mood very low for a while. The good news is that it does get better and here I am 7 years after radiotherapy feeling on top of things and energetic again, Do take a short walk even just to the letter box in your garden as small bouts of exercise does help.

Hang in there it really does get better.

Lyn

Sophie66

RadioactiveRaz 1 hour ago in reply to Sophie66

So true Lynn. Time does heal. John my hubby used to be the same with me. Now we’re walking 15km a day plus riding our bikes. 7 years ago like you that was a thought an impossible fear.

Hazel xx