WE WILL!

Hi Kathleen

He had his feeding tube for about 8 weeks after the treatment finished but we didnt use it for the last 3. As for food tips - he lost all sense of taste so not only couldnt he swallow but anything he tried had no taste. We persevered with the high protein drinks and then as the pain subsided introduced soup and foods with a sauce. He couldnt manage bread, biscuits, cake, chocolate, fruit or anything dry - as his swallow improved we found gluten free wraps, bread etc was much more manageable as it breaks up easier in the mouth. We’re vegetarian so that made things a little more difficult.

We found decaffenated tea and coffee are better as they dont dry his throat - we buy the clipper organic ones - and he takes mannuka honey +25 everyday. It really is trial and error to find things  you can manage. If we’re going put I always make sure I take something he can manage - if we’re eating out I always check the menu beforehand and we get through bottles and bottles of water- it’s everywhere around the house and weve always got some in the car- he cant eat or go anywhere without some. 

Things do improve and his taste has come back though different than before - he used to have a real sweet tooth but now cant eat chocolate as it tastes weird.

Not sure if this helps but ask away if you’ve got any other questions and good luck.

best wishes 

Emma

Hi Kathleen, 

I am thrilled for your all clear news.

the stories are all so familiar now, this virus is a ***! the virus i think of as female but the cancer is male in my mind..funny?

It sounds like you did the hard yards and I have to say I am going to get a feeding tube if they offer me one and i will ask for one if they dont if only for hydration! I live in NZ and at the moment its 32 degrees(unusually hot) and I am about to start treatment..!

keep going and good luck back at work...god i can imagine that is going to be hard!!!!!!

I wish you well....

Paula..

ps thankyou for the tongue exercise tip!

Hi Kathleen, many thanks for you post. So glad you are a good way down the path towards beating our mutual unwelcome companion. It must have been great to get the ' in remission ' news. 

There was a big article on HPV in the Mail on Sunday today. 

Best wishes

John

Thanks John, I read the daily mail article which promped me to Google, so I found these pages. I stayed away from the internet except for trying to coming off tube feeding support and advice. There isn't much out there and I certainly haven' met anyone that has or had one. Once again good luck with your treatment and recovery

Thanks Paula and good luck. Ask me anything at all as you are going through your journey. I was never in much pain at all, it was other side effects Ive found challenging. My prof told me that its an 80 percent success rate with this type of cancer, which really boosted me as brilliant odds. I never thought iwouldntbeat it, i also never thought 'why me' as its healthier to think 'why not me'  be positive, be kind to

 yourself. Take care 

Kathleen

welcome to the forum, glad to hear that you are now out the other side of treatment.

it does take time and confidence in a social food situation crops up now and then

i am now 3.5 years post treatment and have had to adjust my eating habits 

it takes me twice as long to eat anything, which means I am always the last one to finish my meal in a social situation. To assist with this though I get a bit smarter with the order, I will tend to order a soup, try to go for fish in the main and ice cream after.

i know you are not there yet, but you will get there .... it was six months post treatment before I could really push on with food

i have included a blog post I wrote on the subject of taste ... it might resonate

gammaraygary.wordpress.com/.../

i finished my treatment 15th August and my aim was to be able to have Christmas dinner. I got there but only just

gammaraygary.wordpress.com/.../

keep that throat hydrated, carbonated water helped me but the fizz can be a bit too much in the early days

its all trial and error, little and often and what does not work now might work in a couple of weeks or months

keep us up to date with how it goes

vatch

Hi Vatch.. Or anyone...

Did anyone apart from Lynn and myself have an open wound in their mouths before treatment started? Mine is big enough to put half a golf ball in...! Any one? Preferably someone recovered and in remission.. Lol

thanks for listening and hopefully answering? 

Paula...xxx

Thanks Vatch. Your blog has made interesting reading and so much resonates. Inspirational and amusing too.

3.5 years is fab. I plan yo do some food shopping and try something new. Ivebeen dreaming of chips and gravy from the chippy, so will try  that his week. I havent managed chips yet. I did have soup xmas dayand tried xmas pud but choked on that. Food just seems to get wedgedin mythrought, it gets a little scary. My first day back in work today I just took an esurebanana milk shake do I wouldn't have to think. I don' know how you worked as much as you did.  That said I'm lucky enough to work for a large company that paid my full time wages for 6 months, then half pay, with no pressure to go back b4 being ready. Ive accepted that my eating will change forever, no bad thing and a price well worth paying.