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.

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 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,

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

Great news re melanoma yiubare due some good news

hazel

Hi Hazel,

Many thanks - I'm still finding it hard to believe my good fortune this time.

I'm glad to see that you are enjoying your hols. I'm in awe of how active you are!

Kind regards,

Jolamine xx

Hi jolamine

Thank yiu haven’t always been it’s onlyvsincex2015 when I rediscovered biking ! Typical last year I had never been as fit and look what I got !,,

determined now not to let it define me so onward and uoward

hazel 

Hi Hazel,

It's just as well you were as fit as you were last year. I'm sure that all that biking in Spain has helped to pull you through the nightmare you've endured in the past year. Long may you continue on this onward and upward path, or road in your case.

Kind regards,

Jolamine xx

Thank you am off to bed now , been reading up on parotid gland as my right one isn’t producing thin saliva and untilmitbdoes if it does dry mouth is here to stay .so thinking about acupuncture when we get home willing to try anything.

Night night

 h   

Hi Hazel,

I have had a lot of bother with dry mouth, due to medication. Have you tried any of the sprays or lozenges, or found anything that works? Please let me know how acupuncture works for this. I have never heard of it being used for this condition.

Sleep tight!

Kind regards,

Jolamine xx

Hi Jolamine

i have tried all the spray including buying ones in Spain for dry mouth 1 they all taste of fish oil ! Lol which is revolting 

2 get no more than a few mins relief from them

I use bioxtradry as a mouthwashwhuch is £9 online but eventually I got dr to prescribe me one a month at a time after a battle but uve has that with my drs all the way through all I get is budget budget .

mine isvaused by the radiotherapy that was targeted through the parotid gland not chemo or meds I know atvtheb2 year stage whatbuvw gornis likely to be as good as it gets . 

Re acupuncture will let yiu know an alternative therapist recomenened I try it  when we get home I will look around.

ps why are u awake at 0220 !

h x

Hi Hazel. Its me again!!

My husband had his parotid removed. Then the RT left his mouth like a desert. We carried copious amounts of water everywhere we went. I noticed he gradually was drinking less. Around about the 1yr mark his other saliva glands started to compensate and he was fine from then on, but still prefered moist foods.

The downside was gustatory sweating. The nerves from removed gland rejoined and saliva used to leak from side of his head. We tried botox injections but nothing helped. He used to get very annoyed and embarrased with it. He avoided eating out etc.

Take care speak soon xx

Hi Hazel,

I have found the same with sprays, but am interested in how accupuncture goes if you decide to go down that route. I have had dry mouth for 9 years and it is getting worse.

As to being awake at this hour, I'm just a night owl.

Kind regards,

Jolamine xx