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.

Well I have good news - no cancerous cells in my biopsy!! Much relieved - but sad for what everyone else is going through, I half feel I'm not one of the clan now and have no right to be on here, but thank you all so much for the support, and I know you'll be pleased for me. Consultant said he cannot discharge me yet as there is still a painful lump in the biopsied area which has not healed properly and so I have another appointment in 6 weeks time. 

He also asked the nurse to make me an urgent appointment for an impression to be taken for a mouth guard to protect the sore patch from my teeth but they couldn't fit me in for ages. So I'm using a DIY one I got on eBay, cost me less than 2 pounds, you pour boiling water on it then mould it to your teeth, obviously not as good as a custom made but it does the trick. Sort of!!! Not looking forward to sleeping with it on. I ordered it just after the biopsy but couldn't stand the feel of it in my mouth, but now I've been told I really need to wear one, I'll persevere. Apparently they are £200 from a dentist. 

We live in Norwich and Yes, the care I have received both from my GP surgery and the hospital has been excellent, can't fault them.

And Yes I have Bengals - they actually belong to our son who is backpacking his way around Asia. I'm not sure he will get them back!  Am on my Kindle but will post a photo when I'm on my phone, they are adorable. 

Xxxx

Hi Kitty

Oh I am so pleased for you great news! I`ve been thinking about you all day.

Hopefully things will have all settled by the time you go back in 6 weeks and you will be relieved to get discharged.

How can you not be one of the clan? You have been through the mill as we all have and are now in a position to reassure people waiting for biopsy results that its not always bad news. Afterall its always the best news to hear after an anxious wait.

Yes do perservere with the tooth guard you might find the swelling will reduce if not getting irritated with your teeth while your asleep.

I had mammogram yesterday heck that is so painful its unreal! She told me to make appointment with GP as there is a couple of issues (lumps and skin peeling). Although thats no excuse for you not to get yours strike it off your list of things to do.

Thats the trouble with being temporary foster parents to the kitts its the parting with them. They grow on you so quick. I know I am so sad when I see her go and she doesnt want to go, takes ages to get used to them not being around.

Dee will be along soon to share your great news.

Do keep in touch  xxxx

Hi Clara And you know we'll be thinking of you on Thursday. Glad you got the mammogram under your belt, one less thing to worry about. 

Here are some photos of the kitties to cheer us all up xx[[]]

And here i am Kitty!   Clara you know me already!... i am sitting with tears of happiness for you kitty such fantastic news  I looked on here around 3 pm today as i had you in my thoughts all day got bit worried when seen nothing then thought maybe at hospital or the pub celebrating and eating 6 pack cheese and onion! i am so happy that your not one of the gang as none of us want to be in this hellish gang but hey we all gotta keep each other strong!  im sure you will be back to eating  better soon. you gotta stay intouch too kitty as clara says to help others. Clara and me would miss you too! im sending you the biggest hug and kiss kitty  we clara and myself are both so happy for you stay  in touch and keep well. xo  

Hi clara how are you doing? its hellish that you had more pain yesterday.                                                          clara you have had so so much to deal with...... and now a visit to doc regarding  your mammogram...      and yet you still have your sense of humour...you are  a credit to yourself and late husband..keep strong clara my thought s are with you for  Thursday please let us know how things go  loadsa hugs  from me and im sure kitty too!! xo D.     

  Lovely pics Kitty....so thats wer the name Kitty came from! Lol..

Means a lot to me that even though you have suffered the scourge of the dreaded C, you still find it in your hearts to be happy for someone who has escaped it, I feel very humbled .

And actually you were right - we DID go to the pub! We intended visiting a new coffee shop but when we arrived it was closed and the pub is nearby.......

Still not quite ready for that crisp blow-out but I managed some chicken and chips ( no vinegar.) 

Working tomorrow so off to bed now, didn't sleep too well last night, but really, a huge thank you for your support over the last 2 weeks, can't help but think how lucky I am, I know up and down the country there will be others who didn't receive good news today. Hideous disease.

I will definitely stay in touch, again thank you for caring xxxx

  aww what a lovely message kitty  thank you... im sure you will have the best sleep in the last lot of weeks...sleep well  keep well  and keep in touch the very best of best wishes mrs and DONT forget youve to book that MAMMOGRAM!!! REAL SOON!!!  xo

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 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.

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 

deep breaths keep iff google please. 

Ive had 2 radioactive injections whilst I was having pet ct scans the amount of radioactive serum is minute don’t worry about it yiu are only radioactive for aboutv8 hours keep away from children and pregnant women. 

Dont know about the lymohedocgomy but go with the consultant. My brother in law hasn’t justbhad sentinel nodes  biopsy ungetva general,he was out 4 hour sessions later his is melanoma on forehead not h n c I know  . Don’t panic I wasn’t told at my m f t one of my lymph nodes was in operable near my spine apparently at the back of neck dr Sen said don’t worry about it as radiotherapy will get it so I forgot about it  sometimes we have to trust in the consultant.

Keep kn touch

hazel