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.

Added you and Clara as friends, demc, thinking I could message both of you at the same time, but it doesn't work like that on this Forum ( I used to belong to Dacia World Forum and you could add several people to the same conversation - yes, I drive a Dacia, please don't unfriend me!  :D .My badge-conscious son almost died of shame but I don't care, I love my Duster!)

​​​​​​Didn't sleep all that well with the mouthguards in, just felt wrong, but I will persevere. I'm going to see my dentist as a bit of filling crumbled off some time ago, it doesn't hurt so I thought I'd leave it until the next check-up but now I'm wondering whether that has caused erosion of the tongue. That or the toothpaste - have switched to an SLS-free one, amazingly Lidl do one for I think 59p, the branded ones like Kingfisher are ridiculously expensive. 

Got to get ready for work, one more sleep before your appointment,Clara, you know we'll be rooting for you xx

Hi Dee & Kitty,

For some reason I have the jitters about tomorrow, alot more real now and I think I`ve been burying my head in the sand a bit :-( But I`ve had loads of things to contend with(house buyers let me down yet again!) I was going to move back to my home then this all came up.

Kitty those are adorable pics!

I will be in touch soon keep well both of you ladies. xx

Hi Clara,

Here's hoping that all goes well for you tomorrow.

Will be thinking of you and praying that it's good news.

Kind regards,

Jolamine xx

   Dear clara our thoughts are with you for tomorrow... wer all here wishing you well... D.

Hi Jolamine,

Thank you for your kind words.xx

I think it wouldve been best if consultant had`nt said he thinks the cancer has spread at least untill he had some evidence ie:CT scan. Ah well I will know for sure tomorrow.

Kind regards xx

Hi D,

You are so kind, we are strangers but have all formed a friendship so quickly too.

I have spent the evening reading Ian`s blog about his journey. It brings back alot of memories.

My daughter visited today. She is going with me tomorrow. I told her if he gets the nasoscope out she is to excuse herself and leave the room. She asked why? I said because I may well hit him if he hurts my nose. She said in that case I`m not leaving.Haha I bet I get a warning off of her before we go in :-) I`m terrible!

Be in touch.x

Oh Clara I'm sorry to hear you're now worried about today, apologies for not logging in last night but awful day at work, went to bed early and am now wide awake at silly o clock. 

The same problems will be waiting for me at work today so I won't be able to check in till this evening but you know we are all thinking of you. 

Try not to punch the doctor, you need him on your side!!:D

Sending hugs to your daughter too because she is no doubt worried sick as well.

Fingers crossed ( and everything else) 

xxxxxxx

Hello Ladies hope you are all well.

A bit of a mixed bag today some of which I didnt expect.

I have to have a procedure before surgery a lymphoscintigraphy(hope thats correct spelling). This can`t be done at my hospital so I`m told, so being transferred to the university hospital. So surgery has been arranged for two weeks time with a surgeon I`ve never met.

Consultant keeps looking at me with a strange look,he thinks I`m too calm. Maybe the calm before the storm do you think??

There was a couple of things I forgot to ask him as usual. That annoys me! But saying that he was reading bloods results I`d had done but did`nt share I had to prod him for answers so if you don`t ask you don`t get told.

I didnt get much sleep and was awake before the birds this a.m so I hope to sleep round the clock tonight.

My daughters face today when Dr was hurting my flaming tongue was a picture of tension she was waiting for me to explode,I did`nt though :-)

Oh and yes I have looked up this nuclear surgery hmm I probably should take my own advice and not do that. But when he said radioactive injections I just had to....

Speak soon. xx

I hadn't heard of the scintigraphy thing either but it seems like a good thing to do, I understand that it identifies the primary lymph node near the affected area and means that surgery is less invasive compared with the traditional lymph node dissection. I have learned such a lot over the past 2 weeks! So I am happy that they are doing this for you, Clara, but again just so sorry that you are in this situation.

Relieved that you managed not to headbutt the Consultant! 

I know what you mean about forgetting to ask things, I think if I need to see a doctor again, I will write down my list of questions and take it with me. 

Sending hugs xx

Hello clara how are you today...thought about you all day yesterday kept checking this page Im so sorry that the news itsnt good having to transfer to another hospital too...my heart goes out to you clara...shame you didnt let that nasty doctor know how much he hurts you...good job i wasnt there!! with all thats going on why couldnt he be a bit more decent?? From what i read here from kitty it seems a better idea than dissection which i had done which was invasive doesnt help the look of an older womens neck either!! wer all here for you clara between us and the strength of your girls which must be so hard for them also...stay strong our love best wishes xo D.

Hello clara how are you today...thought about you all day yesterday kept checking this page Im so sorry that the news itsnt good having to transfer to another hospital too...my heart goes out to you clara...shame you didnt let that nasty doctor know how much he hurts you...good job i wasnt there!! with all thats going on why couldnt he be a bit more decent?? From what i read here from kitty it seems a better idea than dissection which i had done which was invasive doesnt help the look of an older womens neck either!! wer all here for you clara between us and the strength of your girls which must be so hard for them also...stay strong our love best wishes xo D.

Hi D

Yes it`s perhaps a good thing he is not doing the surgery he is so heavy handed.

From what little I was told the CT scan they were not 100% about neck nodes so the team decided to err on side of caution and do this further test to look for sentinal nodes. Hmm maybe they are not where they should be. Dont know why I hav`nt had MRI, thats the usual is it not? As far as he said I have to go into hospital on the Wed and have this test then operation on Thurs.He said if test shows up any pos+ nodes the op will incl neck dissection, that in turn will change my TNM so change treatment plan. So its a bit unknown untill then,not ideal.

Well D I am hanging onto your testament that biopsy is worse than glossectomy I will let you know how I find it :-) Consultant drew a picture for my daughters benefit and played it down so very matter of fact as they do. How on earth can he tell how far they need to go for neg margins? I butted in and said that will depend on margins he replied yes very much so.

My younger daughter was so relieved last night that I had agreed to treatment, I told her thats only because of the support and advice on here it has totally turned my thinking around. I think the consultant talking about spread even before any testing had put me in a negative place :-( I am not normally a negative person really.

On my usual witty note..... Perhaps if they do the neck they will do a bit of stretch and tuck at the same time,less skin to staple haha. I won`t be so witty in coming weeks.

Keep well.x

  Hi clara good to hear from you, you must be a bag of nerves as must be your daughter too but you will get through this torture..and the sooner the better so many great people on here that are poof that we all have more strength than any of us realise...The couple Radioactive are such an insprieng couple arent they...So you go get that damed cancer by the throat! show it what your made of...its a long road clara but time goes so quick your girls and your family here are right along side you try not to worry you gotta get your sleep rest eat all you can now please stay as strong as you were holding your husbands hand...thats my girl im sure hed say...loads love claraxo        hey clara i asked for a nice pull and tuck the doc laughted said oh dont worry it will be tight!  x

Hi D.

As you can see Im a night hawk always have been. I can lie in the mornings dont have any reason not to.

Im trying to keep nerves in check by not over thinking and keeping occupied. IE: got in from Tesco at 10pm and still had to get myself fed.

This is all getting a bit complicated,my older daughter is waiting to go in for a breast lumpectomy (not cancer but lump has grown alot)she has had her pre op check so is just waiting for a date. Hmm wont be ideal if its same time as me :-( I will not allow her to cancel under any circumstance.

Here is one for the What not to say to a person with cancer! My older sister on learning my diagnosis etc said she is going to visit sister in law that evening, Oh my! this will give us something to talk about tonight!  Geez if I ever get foot in mouth like that shoot me! Is it the adage Im a pensioner I can say whatever I like? It brought back a memory when her husband seen my hubby right after his surgery (it was pretty bad looking) he said my god what a mess your in! I had spent days telling my hubby he still looked the same old same old self.

Sorry Im waffling lol. Maybe time up lol

Speak soon. xx

Hi demc

thank you for your kind words. I just wish this site was easier to type on! The numbs of typo mistakes do my head in Lol  that u make  

I decided that h n c want going to beat me or define me having a wonderful oncologistbrrally heloed he just oozes confidence,even if you meet him in the foyer he makes a beeline of coming over give some me a hug I might not have been due to see him but if he see you he comes over for a chat and nit abiytbcancee it’s usually football or family  it’s the little things that’s why I am in her trying to pass my limited knowledge on  didn’t help this week niw eeffeeed back to local ent  n git bumped at first appointment, but went at ut like a dog with a bike We list nearly an entire year last year and I am getting that feeeybto Spain come hell or Hugh water. Lol

have a good weekend every body 

ps wa th out for an announcement 27 July world head and neck cancer day doing a sponseeed bike ride for my cancee hosoital will be setting uo a just giving page in the wirkds if Tesco every little helps  

haZel 

Hi Clara

your late husband is certainly still your hubby and don’t let any ones tell yiu any differently ! yes you are a Mrs as well the Ms does my head in .

i have a sister in law who is just as interfering when my neck was at butbstill worse she kept asking me when was I going to clean it up ummmmmm let me think about it oh Incant !!!!then her friend had breast cancer which is bad but sandra could always eat so she would say to Sandra can eat ,so I shouted one day I dont eat with my boobs !!!!! i eat  with a radiated mouth ! Didn’t shut her up though her hubby just had melanoma off top of head she is scrubbing it to get blood off wonder why he now has an infection in it !

oh well please keep in rouch

h x

Never thought I'd laugh out loud on this Forum but I just did, Raz! "I don't eat with my boobs" - priceless!

And I've been having trouble with the typos as well, I even thought it was my phone and ran an update, it's a bit better now but there are still times when I type and it comes out as gobbledegook. 

I read voraciously as well, Clara, I can lose myself in a book. Usually crime novels ( today I learned what a Glasgow Smile is.)  

Having gone through most of the over-the-counter remedies for sore mouths ( Difflam, Anbesol, Hydrocortisone pellets) without success I am going to try some Orabase Paste - the sore place is getting bigger and I can't keep the mouth guards in all night, they drive me mad .

Sending best wishes your way Clara, and as Raz said, keep in touch. Or rouch even!! ( Sorry Raz I couldn't resist!) 

Hi Bengal kitty

glad I made you lol ! It’s a priceless one I have to agree with !

re sore mouth my oncologist wouldn’t prescribe anything apart from a saline solution of 9gram of salt in a litre of water ,he didn’t believe in any if the propriety ones just the old fashioned ones .He prescribed gelclair for ulcers that was all .

have you tried baking powder one teaspoon to a cup of like warm water ?

your attempt at misspelling nearly as good as mine  lol

Hazel aka RadioactiveRaz x

Hi Hazel.

I came across a couple of interesting things on USA cancer survivors network.

Magic mouthwash isnt really a marketed product as such its a recipe of 3 items lidnocaine,gaviscon type of product and benadryl. Docs write a prescription as lidnocaine is po and pharmasist mixes it up into a mouthwash. An antibiotic for thrush can be added.

Other interesting item was: An oncologist gave a bit of advice to a patient regarding loss of taste, he said to rinse tongue once a day with one teaspoon of sesami seed oil for two weeks. Patients wife wrote that he was beginging to taste some things within 2days and could taste most things within 2weeks and was enjoying food. I am assuming this was post treatment as you couldnt have an oily mouth during radio.

I did warn you Im an avid reader :-)

Hi Clara

i also love to read ,was on a cancer USA blog last night as well !

still wouldn’t have got magic mouthwash prescribed oncologist really didn’t want us putting anything in our mouths throats has like he said anyndlares ups he knew what we weee taking as opposed to lots of different things. 

I never lostbtastebsomwas lucky in that respect have heard tomhelpmwith lackmofbsaliva swirl olive oil round the mouth dontbgancy that though. Lol

keep in touch Hazsl x

  Hahahahaaa Raz dont even try to fix these typos they are fantastic!! just read this message out loud to my husband oh what a laugh!! and we all need a laugh together! best wishes to you all xo D.