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.

Hi Hazel.

I see consultant in 3 weeks,she mentioned that I will need 5weeks at least to heal.

Other than that no mention of chemo/rad yet. But my origional consultant said if I needed neck dissection then I would be having radiotherapy :-(

Speak soon xx

Hi Dee,

I dont get email notifications so couldnt post via phone while in hospital. Shouldve took ipad in with me.

A few things kept me grounded in bed on drips, oxygen and feed tubes. Things I didnt expect. Had a look in my mouth well as much as I can any way ugh not pretty. :-( Neck not either I look like I`ve been attacked between the slash and bruising :-( She didnt take me up on neck lift either,just have to win lotto then :-)

I have stitches and glue oh my doesnt half itch. Did you have alot of numb areas on face ,ear and neck?

I know my op will have differencies from yours but the nerve pains are bad all on right side, and a headache that wont shift since day of op.

Thank you so much for your support and friendship means a lot xxxx

Hi Clara,

I’m glad to hear that your surgery is behind you now, although I’m sorry to hear that it was so traumatic. Still, here’s hoping that it’s onwards and upwards from here.

We are all thinking of you and wishing you the strength to kick this into touch.

Kind regards,

Jolamine xx

Hi Kitty,

Yes thats over thank goodeness. I think I fooled myself or the docs did :-(

Coming up one chicken imoji :-)

xxxx

Hi Jolamine,

I think I wasnt as well prepared as I thought,although I didnt want to overthink then chicken out.

I must say I met up with women in wards who had been through so very much,this is a cancer that keeps on kicking back for some. So very cruel. The treatment ie: surgery is quite devastating.

Breast clinic have written to say they are happy for me to see GP and take any further testing etc from there on GPs advice. That makes me feel they were being cautious.

So good to hear from you xxx

Hi Clara,

I can appreciate that it's not the easiest cancer to deal with - maybe just as well that you weren't prepared for all you had to go through. Unfortunately, cancer is one of these diseases that continues to challenge us and, you'll always meet others, who are worse off than you are.

I am glad to hear that the breast clinic is leaving you to the care of your GP for now.

Take care of yourself.

Kind regards,

Jolamine xx

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..     

[[]]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

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