Hi Ruth,

Am sorry to hear of your diagnosis and subsequent treatment.

There will be some challenges ahead and unfortunately taste buds can be one of the main side effects. From my experience the challenges are after treatment and the recovery period varies from person to person.

I was diagnosed with tonsil cancer last June and finished my treatment last November.

I started a thread here and its under Living with cancer, titled Radiotherapy for Throat Cancer.
Lots of useful replies and shared experiences there now and may be worth scrolling through.

I also kept a blog from the get go and logged each week as treatment and recovery progressed and also highlight some useful tips along the way.

I often said on my thread to others that there is light at the end of the tunnel waiting for you and also my main mantra was to drink, drink again then drink some more.
I believe water is one of the best medicines during and after treatment and although it can be hard sometimes, try and drink as much as possible Even a little often is the way to go.
Keeps you hydrated and by default uses your throat muscles.

I have shown the link below and I hope that helps you in terms of awareness and potential road ahead.

Please feel free to ask any questions you may have or if I can help in anyway

radiotherapythroat.home.blog

Onwards & Upwards

Ian

Hi Ruth this isn’t Hazel aka RadioactiveRaz I am now now 13 month post radiotherapy for exactly the same cancer T2N2NM h p v v 16+  Welcome to the club no one really wants to join 

I can only  echo what Ian aka Anchor 1707; says I too have a blog where I detail my experiences 

www.radioactiveraz.wordpress.com 

yes the treatment is brutal but doable I am a wimp but I got through it  I have various others links on the blog , just remembers  its a good cure rate . Keep drinking as much water as you can  it really does help 

Any questions please ask the forum is very helpful ,I was lucky nevertheless lost taste buds but did end up with a nasal feeding tube ,  your tastebuds eventually return some things maybe won’t  taste the same but you get used to it 

Hazel x.

Thank you Ian, I have read most of ur blog now & inspired to how positive you are, I hope I remain so as I continue into week 3, I believe u started to hit the wall by the Wednesday so I’m watching out...I feel like our lives are on hold while me and my partner go through it and doubt myself on how much I can take....will keep going back to your blog....thank you for sharing and I hope you are fighting fit....Ruth 

No Hazel, def didn’t want to join this club and still sometimes wake thinking it was just a bad dream, lol wishful....I’m here though and I miss my life but I have to do this, tried al, the way outs and all of he doors closed on me...so onto week 3 Monday, thank you for sharing your blog, it really does help to know what’s in front....do u lead a normal life now ?

Hi Ruth 

if u say 8 weeks after treatment we flew to Spain 18 days 

4 days after results flew again 21 days 

late feb this year sailed over fir 8 weeks 

late June 2 weeks flew and we are sailing again soon hope that gives u inspiration . I am 95% me warts n all  u have a lie down no longer than 20 mins can’t say it’s a nap but re charge batteries am uo 0890 most days bed 2330 ish sleep pretty well apart from sips of water but am half asleep anyway.. can ride my bike all day walking tires me out.  Am back to reading 2 good books a week . Food wise curry n chilliest no a lot of meat hard but u find s balance that suits. Lamb steaks and roast veg are my staples always had expensive tastes. Lol I rarely drink so that’s not s problem for me last had s g n t 2 eeeks before diagnosis last May. I know plenty of others whi can have the idd drink now. I have to dunk biscuits in coffee scarily I hated dunking plus I now can eat walkers plain crisps takes 45 mins but hey compared to a year ago miracle. You will get there just keep in touch it helps to bounce off others 

hazel. Os where in U.K. are you ? X

That most certainly gives me inspiration, read some nightmare stories on fb tonsil cancer group...yeah I here u on the crisps, one of my fav binge foods lol.....in Manchester well Bredbury to be exact....my journey May to, but this year of course.....I like a drink but normally 2 glasses of wine and I’m done...feel the mouth getting tighter the morning and a dull ache in my back, hoping that it’s not a kidney infection.....

my next chemo is a week tomorrow and last radiotherapy is the 11/10 so while I’m feeling positive this time next month I will have finished treatment.....I’m still eating ok, albeit it tastes crap most of it....I’ve heard a lot about a peg and it sounds gruesome, does it really get to a point where u can’t eat anything xx Ruth :) thank u for being there x

Hi Ruth we are all different Ian didn’t have chemo and he managed without anything aid s I had 2 chemo and in week 4 we had what we call egg Sunday John did me eggs 9 ways and nit ine would go down I couldn’t drink justbthe Ensure drinks so but the bucket had nasal feedingbtube for 45 days in total not the best but kept me alive. Eating held no appeal what so ever but I knew for recovery I had to have sustenance so feeding tube ut was. I didn’t have a peg as my lively oncologist said we would aim to maintain swallow which to an extent I did .plus have heard it’s easier afterward to start eating again some become reliant on the peg it’s alk swings and roundabouts .

just keep in your head when treatment finished the hard work sets in. Try and keep off f b or google sites stick to ones like this and personal blogs where yiu can see that we’ve been through the treatment. I am in between Barnsley and Pontefract my mum was born in Hyde and I’ve been through Bredbury previously. Big  question united or City ?

Hazel ask anything anytime  x

Keep drinking water u need it to clear kidneys if the chemo and radiation I still can’t see kntao water but take a litre of bottled water everywhere 

H 

:D:D:D if i liked football, it would have to be city, nana was an avid fan and was still attending matches with the lads till she was 80, proper trooper....i wonder why some have chemo and some don't......I started this with a choice of surgery or chemo rad & chose the surgery so it was like a smack in the mouth for me, they said they got all the cancer with the neck dissection and tors, i have a friend that had just surgery (yeah i'm a little bitter still lol)

If i have to have something would prefer what you had, don't want something in my stomach.....is the second chemo worse than the first, that one floored me for about 5 days after....

i made some homemade chicken soup to start getting the vitamins in, i've focused on gaining weight just encase i lose any, drinking plenty, 2 pints so far this morning, 1 coffee & 2 mugs of Papaya tea (read somewhere its good for cancer), i'll take anything lol x

Hi will let u off seeing as your nan was avid city we are Man U  lol.

if yiu want to send me a friend request we can chat personally or keep on forum up to you. 

I was lucky the first chemo and the 2 nd I was fine I wasn’t a candidate for surgeryvas I had a baby lymph node that had started filling up with dead cancer cells near my spine at back of neck so surgery was ruled out if after treatment  it hasn’t all gone selectively surgery would have happened.

re the chemotherapy best way I can work out is t1 don’t have chemo Ian didn’t , it’s adds appx 2/3% extra survival rates to the radiotherapy which is the main one my oncologist said 66% of his patients don’t have the 3 rd he can tell by feel in my case he was right.yes agree re feeding tube it wasn’t pleasant but necessary .

re tea I onky drink herbal tea which I have done for year s, as treatment passes you might find ordinary tea  drys you out so swop to de caffeinated.i gained 11 lb and in total lost 18 lbs most agtervtreatment finished. 

Enjoy soup 

Hazel x