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 Clara,

I am so sorry to hear that you have been recalled to the breast clinic next week. If you are too busy next week, please phone and explain your situation and re-schedule.

I am sure that, with all you've been through, you realise the importance of dealing with any cancer as soon as possible.

As Hazel says, it could well be something and nothing, as tests are so sensitive now. Here's hoping that it will be good news, but better safe than sorry.

Kind regards,

Jolamine xx

Hi Jolamine.

Its not that Im too busy as such its just really bad timing. I am having cancer surgery next week at the other side of the country, my surgeon has transferred me to a university hospital.

If the further tests were to be at my local hospital breast clinic it would be so much easier.

I feel awful asking my daughter to take me to appointments etc. She told me she has used up all of her compassionate leave.

But I will get another appointment sorted asap.

I am going to carry on and assume for now that it will just be a routine thing, head in the sand that`s me :)

Kind regards and again thank you for reply xx

 Dear clara,   I have been reading all of your messages here just not knowing how to help...make things sound  that you will be ok that  its all gonna been fine once you get passed all you have in front of you....and you will... YOU are so strong...stronger than you ever realised just take one day at a time get this next lot of weeks....only when you are ready  maybe then back to breast clinic...You have such a fantastic sense of humour.... your daughters are there for you and everyone here on this fourm are standing beside you willing you on to get through  this next lot of months...Im not very good with words clara  but my thoughts and best wishes are with you each and every day... God bless...your friend Dee.xo 

Hi Dee. Good to hear fom you. Thought maybe you and hubby had swanned off on a wee cruise since Ive not seen you posting ;) It is a wonderful thing you do coming on here bolstering up folks that are feeling lost with diagnosis and all it entails :-))

I have been hitting my head off a wall today, why do nhs give you direct contact numbers and when you call all you get is a taped message. When you do get CNS to call you back she has to confer with another dept  and call back.

It took untill 4.15 today to get some sort of answers. Any how have sent off an email to Breast clinic explaining situation and will hear from them whenever.

D can I ask you if you were told your cancer stage? Ive been told the TNM and the grade but I hit a wall of excuses when I ask the stage. And its bugging me no end...... Im driving my daughter mad!

I do seem to have the habit of injecting a bit humour,cant help myself.

Hazel might find herself with a stowaway aboard yet haha.....

Thank you again and bless you.xxxx

Hi Clara,

I can understand how bad the timing is for you, but am glad to hear that you have contacted the hospital to re-schedule.

Do you not have a scheme whereby you can be driven to the hospital by a volunteer? This would save your daughter from having to take time off work every time you have an appointment. Ask at the hospital if such a service exists in your area.

I hope that your surgery goes well next week and that you don't have too long to wait for your re-scheduled appointment. I go in for surgery the week after you, but it's just for a melanoma this time.

Kind regards,

Jolamine xx

Hi Jolamine.

I have seen cars parked in ambulance area with Maggies cancer logo on side perhaps they are providing some sort of service, I will try to find some info. There is a patient transport provided by the ambulance service but, daughter says Im not having you wait about for hours for transport.

Oh Jolamine, the way you say "Just a melanoma". Are you not frantic about it?

Ive had AKs treated on my hands with cryotherapy "painful". I also have a Bowens patch that I have been ignoring I am ashamed to say.

 Take care and best regards xx

Hi Clara,

In our area it is a separate entity from Maggies, but it may well vary from area to area - there's no harm in asking

I can't say that I'm too happy about my melanoma, perhaps because I think that there are others elsewhere on my body which will need attention too. I've already had two bouts of breast cancer within the past 9 years and, have had a lumpectomy and a double mastectomy for these. I'm nervous yes, particularly because it is so close to the eye. I have had 5 eye operations in the past 2 years, so am not happy with anyone else interfering with that area.

I hope that you manage to get something sorted with transport.

Kind regards,

Jolamine xx

Hi Clara 

setting off in30 mins where are u and if we are passing will put  u in boot. 

Dont fret about stages our daughter asked my oncologist out right and he gave thefollowing  explanation  with our head and neck cancers being h p v 16+ driven there is no need to do staging only tumour size the chemo radiation will kill what it needs to kill in a targeted area so for a few years sizing has been classed in this cancer as only more worry unnecessarily  for us the patient in this case size n spread is more relevant.

mine was T2N2NM 

so sizing. T1 size of a pea

t2 a peanut

t3 a grape

t4 a small,plum.

n is number if nodes which I was 2 but eventually 3/4

nm no metatis 

all way along no one could tell me if I had my right tonsil removed so yesterday for first time I saw the consultant who did biopsy straightaway he said yes insaid are unsure my oncologist was unsure so he hesitated. Read his notes shook his head got head torch out pulled my tongue ps which is still hurting said the following 

oh ni it didn’t come out I hacked around a lot it has spread quite a bit into soft  palate interior or anterioror wall but when looking niw the radiotherapy has melted away !,, ok i said thank u .he was most shocked at himself for not removing it said it was his specialty!!!!!! Cheers I think now I niw why I has so much pain n hubby kept saying he was 7 blah blah blah when he had his out. Lol

oh well passport is calling me

please keep in touch ,do u have a Macmillan centre they may dontransport plus they can help financials of need be 

h xx

Hi clara oh to sail off on a cruise.....maybe we can all one day.... we bought a pup a gorgeous Goldendoodle last year hes the size of an adult now! so cant even pack him away! but hes such a gorgeous gentleman love him to bits!! well clara you must be running around like a headless chicken.... hope clinic have been in touch so thats a bit off your mind for a wee while...are the hospital going to sort out trasport for you??  clara i dont know very much about my cancer at all but im due back 13th feb for check up so im gonna ask more what they did tell me was they found trace of cancer in lympnodes so they removed them 14 my husband tells me....wonder why so many if it was only trace? doc told me hed thought stage 2 but because of trace in nodes was more stage 2/3  so maybe until they remove what they will only then can they tell you more? no sure clara i heard word Cancer thought right get the damed thing out!! I wish we all on here could go hold your hand in hospital clara while you go through this xo...but wer all with you in mind... keep us all posted on here help get your time in when in hospital....pity you cant jump into Hazels boot peace from all the torture...  bet youd even wear your bikini!! keep up the humour clara...your friend Dee.xo

Hi Jolamine.

I cant find the words to say how awful I feel for what you have been through and, still are going through.

You are a strong and determined lady for sure.

I hope your surgeon is one of the best. I can understand why you will be concerned after 5 eye surgeries. We tend to take our eyes for granted untill something happens. I suffer from uveitis and other inflammitory problems it comes on so sudden with no warning, so Ive become a bit paranoid about my eyes over the years.

I am so taken aback at how folks on here share and care I dont think there is another quite like it. I wish i had found this place when my husband had become terminal.

Take care Jolamine & I will be thinking of you. xxx

Hi Jolamine.

I cant find the words to say how awful I feel for what you have been through and, still are going through.

You are a strong and determined lady for sure.

I hope your surgeon is one of the best. I can understand why you will be concerned after 5 eye surgeries. We tend to take our eyes for granted untill something happens. I suffer from uveitis and other inflammitory problems it comes on so sudden with no warning, so Ive become a bit paranoid about my eyes over the years.

I am so taken aback at how folks on here share and care I dont think there is another quite like it. I wish i had found this place when my husband had become terminal.

Take care Jolamine & I will be thinking of you. xxx

Hi Clara,

I'm sorry to hear about your uveitis. This must be difficult for you to cope with.

You are so right about taking our eyes for granted until something happens. After my 4th eye op, I gradually lost the sight in one eye and then began losing it in the other and had to stop driving.  A laser operation last year eventually restored my eyesight and I feel so humble to have got it back, but I still feel nervous of having anyone working in that area.

This site is a great help. Like you, I hadn't come across the site when my parents were terminal. It wasn't until I was diagnosed with cancer myself that I discovered it and, it has been a real boon to me.

Kind regards,

Jolamine xx