Hello Expat. I hope you went out today and spent time with your friends from work,   I just want to say that i am recovering from tongue cancer I am not or never have been a drinker or smoker so when " they say" it is a smoker/drinkers cancer they are wrong...I was told that i was in the wrong catagory didnt tick the boxes so we will send for you again in 10 to 12 weeks but absolutly nothing to worry about returned 12 weeks later had an understudy take a biopsy  by this time i had earache as well told no nothing to do with tougne go see your doctor again about your ear its nothing to do with your tongue and again you have nothing to worry about this is NOT cancer we will have results in 3 weeks time. returned to be told we will take another biopsy as we didnt take enough so another one taken.. returned 3 weeks later no its not cancer but it could turn nasty if not treated  we will bring you back and remove it my husband said no  she has been through enough and the earache every day my wife has been coming to you since May it is now September Oh that long...ok go have a cup of tea come back I will remove it in half an hour. Brought back 3 weeks later to be told sorry it is cancer we will bring you in and operate might have to do skin graft. the point im making here is to be told you dont smoke/drink your not in the right catagory is crazy and the earache was caused by the cancer it is the same nerve from ear to tongue this cancer is more common now than ever I dont mean to frighten you Expat but if you are diagnosed with this remember you will get through it its tough but you will get through it...keep your family and friends close as we all need someone to help us when things get tough...and this chatline is a great help too...god bless D.

Hi Expat,

I put some respones to your questions. 

Results wise, I got my results quickly, my consultant sped up the results and I had them within a week of biospy. 

I don't think it would make a difference if you give up bad habbits before a biopsy. But regardless of the result, you should try to give them up anyway if you can.

I had to have time off work for the biospy half a day, so I told them I was having it but nothing more until I got the result.

Cancer does not have to relate to anything we have done, sometimes it just happens. I was 23, hardly drunk and did not smoke. That being said however, now I am recovered, I have the odd drink. You can't live in fear, more so when in the 20's/30's.

Please keep us updated, good luck.

Omg bet they are even more revolting than the banana or vanilla or chocolate ones. Shudder

the thought I lived on these for 45 days 

h 

Oh I shudder at the thought ugh!

They sent me home with a big bag of bannana, vanilla plus same in powder form and wee bottles of ensure compact.

I tried the coffee one in hospital as I love coffee. Wrong!! most revolting stuff ever.

Ive only lost 4.5lbs last week so I don`t know why they were so weight obssesed. They were showing my food tray to charge nurse, that really annoyed me. As I said I will eat better when I get my appetite back, I like my food and goodies.

I tried adding real bannana in the nutri bullet my daughter has loaned me, nope still tasted of chemicals to me.

I am dreaming of Paella and a cold Sangria :-) Oh yes and Churros. Now Im crying in my soup.

Take care speak soon. xxx

PS We have flipping snow!!!

HimClara

the onky way I couldn’t get the ensures down little,tip,is to,dilute with bottled water ,added bonus is you are increasing hydration. Likewise the coffee  toffee and chocolate ones all revolted me .imcould just about do vanilla banana and strawberry especially when dilute. I too have a nutri bucket but everything tasted like chemicals have brought it out tomspain with me must try and use it,

paelle still a ni ni then ruce justbsticks in mynthroat can manage 2 churros as long a season I have chocolate sauce ,then the rest have gone cold so,end up bumming them .managage Gaelic cold potatoes today and battered prawns , but most meats are still sticking indream if yiu remains lamb s gambolling in way to my plate sorry all u vegetarians but I live a lamb chop .

alchol doubt if any will ever enter my mouth again last drink was a g n t out here last April thunk I have lost the urge to drink I haven’t been a big drinker for nearly 10 years and before then was onky odd glass of red wine or g n t. 

Onward n upward doe yiu keep taking the ensures I along with anchor 1707 called them bush tucker trials like I’m a celebrity get me out of here. 

H x

Sorry re snow we have 25 degrees gentle breeze. Is it Glasgow where u are sorry if u am totally wrong 

h 

cluck me Kitty!!  your a laugh!!! just  put me off chicken soup you av! xo

Hi Hazel.

No Im quite a distance from Glasgow. I had my surgery there as they have a dedicated centre for H&N cancer. But its quite scarey when in there you meet folks still fighting this 3rd time round. To be honest I couldnt go there. The surgery is brutal.

Two weeks till I get pathology results. Dreading that.

Bush Tucker Trials is an excellent description. I never want to have a nasogastric tube ever again!

Speak soon take care xxx

Dear Clara hope you are a bit better than you have been..I havent been intouch because I thought maybe I should just give you your own time to get your head around what you have just gone through...I just want you to know I think about you every day hoping that you are a wee bit stronger...your friend Dee xo 

Hi Clara,
I'm glad that your surgery is behind you now. It cetainly isn't for the faint hearted. Neither is the recuperation, so I hope that you are doing well.

Two weeks must seem like forever to get your pathology results. Hope they turn out well.

Kind regards,

Jlamine xx

Hi Clara

fingers n toes crossed for you please let us know when yiu have path results back. 

Glad you like the analogy bushbtucker trials. 

Yes I don’t know how people can keepmhaving surgery but don’t think about it

take care

hazel  

Hi Dee,

Great to hear from you!

Been a bit up and down but I am getting there. Am determined to eat food. I am a woman on a mission. Taste is very off,did you have that? I was thirsty and opened a can of cola, ugh it made my glands go crazy and was like vinegar to tongue. So many things I wasnt expecting. Some foods like beef, cheese,salt etc just dont taste right.

Took longer to get over anaesthesia than I would have thought,but I had problems with very low oxygen levels so that probably slowed things up.

I had a look in mouth with an led torch ugh not pretty! They have removed palate right up to tonsil pillar.So I have a tonsil with no arch, I was sure they had removed tonsil. Stitches in tongue and palate havent dissolved yet either,so need to use saline rinse alot more often.

I am definately stronger though not back to normal(was I ever normal Im not sure) :-)

Keep well speak soon xxx

Hi Dee,

Great to hear from you!

Been a bit up and down but I am getting there. Am determined to eat food. I am a woman on a mission. Taste is very off,did you have that? I was thirsty and opened a can of cola, ugh it made my glands go crazy and was like vinegar to tongue. So many things I wasnt expecting. Some foods like beef, cheese,salt etc just dont taste right.

Took longer to get over anaesthesia than I would have thought,but I had problems with very low oxygen levels so that probably slowed things up.

I had a look in mouth with an led torch ugh not pretty! They have removed palate right up to tonsil pillar.So I have a tonsil with no arch, I was sure they had removed tonsil. Stitches in tongue and palate havent dissolved yet either,so need to use saline rinse alot more often.

I am definately stronger though not back to normal(was I ever normal Im not sure) :-)

Keep well speak soon xxx

Hi Clara my arch was also removed tonsil melted away during r/t I found out other week. Hey ho 

h 

     Hello Clara great to read you are getting through the hellish time you have had,  getting back to normal takes a while but you will get there! yes lots of drinks and food dont seem to taste the same even 2 years later i dont enjoy my food at all the way i used to...infact i dont eat that much any more can go a couple of days with out eating if its not soft then dont want it because i find it hard to break it down... think it affects every one differently.       God Clara to have your palate removed up to tonsil piller!... how do you manage to eat, swallow food?? I couldnt even drink water properly had to take small sips...you are doing so well you really are... keep it up Clara you will get ups and downs too we all have, but wer all here for you lots hugs best wishes always> your friend dee xo

Hi Dee

I can understand what you mean about being difficult to chew and break down food to swallow. I am having to take tiny amounts on a fork, food is stone cold its taking so long to eat. Choke easily too. Tongue doesnt shape food properly for swallowing.

I cant open my mouth very far my jaw is very painful and stiff, I hope this gets better. 3 weeks since op and still a way to go healing. I was taking liqiud ibuprofen to deal with inflammation but had to stop as I had stomach pain with it.

I had a notion for scone and strawberry jam oh dear when jam touched my mouth it was more like a lemon. Quite bizzare. Tried a sip of cola it was like vinegar. I thought this would only come with RT.

Sending you a big hug :-)))) xx

Hello Clara its so  good to hear from you, Hope you are slowly getting back to your old self...   3 weeks since your op? you know clara time goes so quick all this discomfort will get a bit better week by week you are doing well trying to eat your scone and jam! funny how you take a pang for things that you used to love to eat then find it so difficult to break down and swallow  I found bread so hard...still do Clara wee tip regarding radio try to drink as much water as you can before and after each session of radio it will stand by you so so much...a lady i met at cancer hospital told me to drink drink drink as much water as you can, I did i truly felt so good for drinking so much my skin was able to stand the 30 doses of radio with out breaking down tho i wouldnt have been able for many more! Clara do wee excercises with your mouth every day more so when having radio gotta keep your mouth muscles moving i was told i would maybe have to get mouth clamp em dont think so! I sang to Adele cd the whole way home! all of 80 miles 160 return every day!! poor husband was tortured hahaa Stay well   Clara speak soon. your friend Dee.xo 

Afternoon all,

Hope you don't mind me hijacking your posts.

I went to hospital yesterday to see consultant about small white spot (about size of small finger nail) on the right hand side of tongue also got some red patches & soreness behind spot. Think doc said he thought it was Leukoplakia but I'm not 100% as it all happened so fast. He said doubt it's anything to worry about but to have a biopsy to be sure & id get a call in few days to book slot, got call today & booked in at end of April, my heads in a bit of a whizz!!!

Hi Stokemale

try and chill out drs most if time do know what they are looking at .in my case my local dr put me straight into the 14 day cancer pathway due to swollen protruding lymph node .best advise u can give you in keep off dr google the information is not regulated. If yiu mustvsurf stick to cancer U.K. sit and  Macmillan. 

Good luck  don’t fret until you have news from biopsy easy for me to say but believe me I’ve been there and done it. Tonsil cancer last year with multiple lymph nodes given all clear in January 

Hazel  come back and update please 

Hi Stokemate

I think we post all over the place anyway so no worries about hijacking.

Probably there is nothing we can say that will calm things down for you. Your Doc would not have said he doubts that its anything to worry about if he thought otherwise. Its no bad thing that he decided on biopsy to back up what he thinks.Remember he sees oral stuff every working day so he knows what he is talking about :-)

Also waiting a couple of weeks for your appt would seem to indicate he doesnt see it as urgent,of course could just be a very busy dept. I was told one to two weeks but they phoned me to come back same day.

Best advice I can give you is dont jump ahead of yourself take things a step at a time. Its very early days 2weeks to biopsy then further two weeks for results of that,so you would be torturing yourself for a month.

Anything you want to ask just ask away we are here to share our experiences,much safer than Doc Google. xx

Dear Clara    Hello how are things going for you? So long from weve spoke I pray you are a lot better than you where and able to eat...I have thought about you so very often...Best Wishes to you Clara your friend deexo

Hi Dee.

Good to hear from you,hope you are well.

I am eating not too bad,so long as I watch what Im having. Things like bread are difficult or near impossible as you said. Its a case of eating what you know you can rather than something you fancy.

I hate the numbness on face and neck I am really hoping the nerves heal and it improves. The skin is stone cold to touch too,did you have that after surgery?

My daughter collected her new puppy today,she sent pics of her, so adorable :-)

I got the house on with estate agent so fingers crossed that they find a buyer,one less worry then.

Well Dee please keep in touch keep well my friend xxx

Quick update from myside, went for my biopsy last Monday 29th April, not as bad as i expected & 1 week on pretty much healed, they said path lab very busy & booked appointment for 4th June to go back for results. Ppl say if it's urgent they'll get in touch before this, guess what, had a call today, results are back & a slot has become free next Tue, im now very anxious!