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.

Hello Clara its great to hear from you hope you are able to eat some...i think just being at home helps so much as you can eat your own food when i was in hospital they had nothing on the menu that i could eat they threatend me with the tube if i didnt eat! id like to see them eat potatoes meat after this kind of op!                Clara i did have numbness in face ear neck but it will get better each day...tho the radiothearpy will numb your neck for a long time after treatment mine is still numb 2 years later...takes a while for nerve endings to. repair i was told somtimes years. I was left 6 weeks until first radio treatment which is good as i think after what you have been though you need to get back to feeling like yourself again, i didnt have the headaches Clara but maybe you are a bit dehydrated...I see you havent lost your sense of humour Clara...                                  Take it slowly Clara sending you a massive hug. XO XO

Hi Clara

glad you are recuperating take this time to chill,out keep in touch let us know Hiw yiubare getting on. Hospitals don’t really cater for  us with sore mouths. I know on my chemomdays I struggled .weathervhere v good although 25=degrees is a tad too hot for me so sat in shade then went to bed for an hour as biked 48 km yesterday thunk I pushed my self a bit too far. Butbhey yiuve got to learn. 

Please keep in touch and good news re breast clinic let your daughters pamper you for a few weeks 

h x

Clara, you crack me up! They didn't do a neck lift at the same time - !!! :D:D

And your chicken Avatar - priceless!!

Despite all you've been through, you are still making us smile. 

Nobody ever sees my neck anyway as it's always festooned with a scarf, usually in some variant of leopard print ( Bet Lynch has nothing on me!!) 

Hope you're getting on top of the pain, they say laughter is the best medicine, when I need a laugh I watch a Green Wing DVD but as it's set in a Hospital its probably not what you fancy watching right now! 

Carry on with the Ensures ( bleurgh!) Sadly they don't do a chicken flavour.... Xxxx

[[]]I stand corrected..     

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

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 Jolamine,

You have that correct re faint hearted. I think I just switched myself off in advance,and didnt overthink things.

A young student nurse asked to watch procedure of 4 radioactive injections into tumour. Consultant gave her the job of grasping my tongue with a swab. As I was watching her face she looked ill. Afterwards she told me that Im the bravest woman she has ever met. Ha looks are deceiving! Mind you she was pulling my tongue against my teeth and it hurt,but I didnt tell her that :-)

Kindest regards & keep well xx

Forgot to say my results are 4weeks following op feels such an age,was too dopey to ask questions after op unfortunately.

Hi Hazel

I surely will let you know how it goes. Being the woose that I am its fingers crossed for no RT!

Read your update on your post. Two mountains!! Are you superwoman??

Photos are smashing you both look so well.

I am sure John doesnt get fed up listening to any complaints from you.He will just be happy that you are there to make any complaints :-) But you already know that.

Hair looking good too. Im going to treat myself to a salon do as well!

Take care keep well xx

Hi Clara,

I know how it feels when it takes so long to get results. I had 2 excision biopsies for Melanoma nearly 2 weeks ago. I was told to return in 1 week to remove the stitches from my face and 4 weeks for my pathology results. When the appointments came through, i got the one for a week, but the other was for 4 months. I phoned my consultant's secretary and was told that this was the first available appointment. She said that the only way to get an earlier appointment was to phone regularly in the hope of getting a cancellation.

I went back on Monday. and, I got the same nurse who assisted at my biopsy. When I told her that I had got an appointment for 4 months instead of 4 weeks, she seemed very concerned and went off to find my plastic surgeon.

When he came in he advised me to phone his secretary again and to tell her that he had advised me to phone her again. The previous week he had asked me to photocopy a letter I had received from the dermatologist, advising that she would only look at the lesion I was referred for and no others. He has been getting a lot of requests from patients to look at other lesions and, this letter would explain why. As cancer lead for the area, it is up to him to change this process, so, he was keen to see this for himself.

I guess that he then had second thoughts, or decided that one good turn deserved another. Next thing I knew, he was on the phone to his secretary himself. When he returned, he told me that he had rushed my biopsies off to pathology as an emergency and, that the results were back. The face is completely clear and the leg looks as if it is also clear. The presentation of both had looked suspect, which is why he biopsied them and, he still had to discuss them at his MDT. He then discharged me. Hopefully, I’ll not get a recall after his MDT and, I’ve been on Cloud Nine since – it makes such a pleasant change to get some good news.

How are you coping at present? I hope that your pathology results are reassuring. Don't forget to let us know the outcome. We are always here for you.

Thinking of you.

Kind regards,

Jolamine xx

Hi Clara.

thanks re hair didn’t want to get it chopped but agree it does look better ,itbwas just the fact that the cancer made me have it cut that I moaned about. 

Yep 2 mountains the 2 nd one included being on a blooming goat track with precipititious drops in one side I did try pullingbyhe cancer card out but got shirt shrif from John lol .am findingvthe exercise is really helping the road to recovery strange as it may seem.

sont panic if yiu have to have r t we will get you through it 

i know that John is really a guy of few words probably due to being a coal miner he finds it hard to expressing himself sometimes  

keep in touch anither 32 km today oops

h 

Great news re melanoma yiubare due some good news

hazel

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

h