HI, It me again moaning as usual!
I have been trying to set up a group for people with Mouth & Neck cancer in the North london area, I have had no replies at all.
Am I being too hopeful that there is enought people around N LDN to want to particapate?
Have posters in local GP's and Charity shops anything else I can do?

Well, Happy Easter to all you guys have a good time
I will be melting the choclate later

Hi Paul - a well worthwhile, but difficult, project.

Have you spoken to the MacMillan nurses, the staff at the hospitals, consultants and so on?

Maybe, just maybe, your local NHS Trusts might be able to help.

You might end up like me. I've been trying to find somebody who has had a total glossectomy WITHOUT a trachy. I just cannot believe I'm the only one in the UK

Anyway Paul best of luck, if you think there's anything I can do to help you know you've only got to ask.

Thanks MIke, Yes it does seem with Mouth & Neck we are few and far between.
I thought it was a long shot but have to try.
As I have said many times I wish the Cancer had waited another 20 years(but look & feel 65!) but that you cannot predict.
I may be wrong but seems to me alot of people have alot of family round them so they dont need or feel they can cope with others in the same boat?
I think out of al this I AM a stonger person but cannot get people to accept me as "normal" you get labeled "That man with Cancer" and most people just look and freak.
How do iI practise my speech when people just ignore me!
You say it is virtually imposible to find anyone with the same problems or operation well me too and find it hard to understand how people who have had tongue Cancer can talk better than me?

Paul

Hi Paul, well remember I was 64 when it hit me and age just doesn't make easier, at least in a physical way. Mentally, well perhaps it may be a little easier but I'm not 100% sure.

I also wonder if people who've had Head & Neck cancer, and particularly those who've undergone surgery, feel somewhat isolated from most other people. Even those with close, supportive family may be restrained from getting involved with something like a support group by their families.
I'm also sure that such families do not impose any restrictions deliberately.

As for people regarding you, personally, as normal. Well, what's normal? I'd rather say you were special. You've had/have cancer, fought it, come through it - most people haven't.

Practising speech, have you tried using a tape recorder. Great fun, you wonder who the hell is speaking !

Hi Mike, I heard myself on the answerphone it freaked me out!
As for looking in the mirrow now no I dont
I have covered them up too depressing.
I read my hospital notes it says
" saw hiself in the mirrow today did not seem upset"
Upset I was devastated, confused, angry, drugged up and even now peole will not tell me the truth how I look.
The only person (god Bless her) was Eileen
She said "you look nothing like you did before your operations!

Hi Paul

Thought i would just say what is the point of lying you did look different you were a healtyh looking fit man before now your looking a bit ragged around the edges but your still Paul I agree its hard to be hit with it at your tender age In your 60's at least yoou have had another 20 good years.

By the way they say that only 50% survive mouth oral cancer I can tell them why a lot of the poor devils commit suicide because they cannot cope and no wonder If I had done for what was a tiny lesion god knows what the rest get. Sorry dopc but consultants seem to think they are clever when they leave people unable to speak or eat. and I think its about time the back up services for cancer were told to each cancer patient on diagnosis a mcmilland nurse at the time of diagnosis is worse than useless dont think I;m knocking them they are wonderful people who do an enormous amount of good for the dying. but you need expertise when you are diagnosed. so you can decide whether you wasnt quality or quantity of life I know what I would choose.
I have devised a 10 point plant that all people diagnosed should ask the consultant I wish this had been available for me I would probably hjave prepared more earl;ier


1.... What is the cancer type, grade and
2.... What alternative tyreatment is available
3... What are the aftyer effects and mean all
ther after effects eating sleeping speech
4..... Get a second opinion
5..... Take plenty of time to think about it and
rush into having treatment you may regret
later
6.... Research the cancer onthe net in the
library the cance organisations everything
7..... AS to be put in touch with someone who
undergone similar treatment
8.... Ask what the prognosis is with treatment
or without treatment
9.... ASkm the consultant what treatment he
would have if diagnosed
10... Finally only agree when you are 100 % sure
Remember if you say no you can change your
mind if you say yes thats it

I apprecaite there are people who cannot wait to get the treatment started this is not aimed at those but it is aimed at people with oral cancer which is so distressing this would ahve saved me a lot of heartache and grief and I know poor old steph agreed with me.
Now I'll sit backk and have all the hate mail fropm your all

Hello Blitz

Good to hear from you again. Good idea to create a check-list of questions for patients to ask.

Best wishes
Vinod :coffee:

Eileen, thanks for raising a real discussion topic. I don't think you'll get any "hate mail". You may well get people disagreeing with your comments, but it's a big step from disagreeing to hating.

Your listing is a great idea, only I'm not too sure about the researching part. Unfortunately I'm old fashioned enough to really believe a little knowledge can be dangerous.

I can only say that I must have been extraordinarily lucky in the team who treated me. Everything (well almost) was explained to me very clearly. Disfigurement, loss of speech, loss of taste, inability to ever take solid again. The likely effects of radiotherapy were outlined in frightening detail.

I was also advised that without surgery survival would be "high months". Even this advice was given with the rider that the survival period quoted was not, and could not be, an absolute.

I was already aware that with any surgery, no matter how simple, there were unquantifiable risks.

Whilst I was ready to give my decision there and then I was instructed, not asked, to go home think about things, discuss it with family and friends. Only then should I make my decision.

Then there's the question of quality or quantity of life. Surely these must be subjective matters largely dependent on the individual. Quality of life in particular is surely dictated by the individual Or am I misunderstanding the terminology?

Personally I'd like high levels of both quality and quantity, but I'll settle for what I've got.

Sorry to ramble on so long but I do think Eileen's opened up a huge item for discussion and I hope we hear from many, many people.

HI Guys,
Eileen an excellent piece of writing may I say.
I did not have a check list but most things were covered by the Consultan.
your point of making sure the Operation for you?

MM well, I can only say when they told me of all the complications that could happen I think I was still in shock of being told I had the Cancer but I did deep down know anyway,Having said that I think of it like taking a tablet if you read ALL the side effects you could POSSIBLY get you would never take one again.
This may be a trivial way of looking at it but it simplyfies it for me.
One thing I am angry about and it has been discussed I was told "I refused to have all my teeth out before the operation and given the time I was told and the actual operation I am not sure they could have done it anyway.
I asked my mate he does not remember any such conversation.
I do remember the Dentist saying looking at my xray "they are ok for now"
Now when I go and they have Students in the room they say the same thing refused to have teeth out before operation :banghead: .
Well whatever the truth is I am paying for it now!
Sorry to go off a bit but it does make me angry.

Paul

Hi Paul

I have to help my patients make the decision of whether to keep their teeth or not!

If the teeth are sound, I advise them to keep them but emphasize that they need to have a very high standard of oral hygiene (brushing four times a day using interspace and interdental brushes, followed by 1 minute of fluoride mouth rinse (Fluorigard), and additionally at night before bed a 5-minute scrub of the teeth with a Fluoride gel (GelKam) or Colgate's Duraphat 5000 fluoride toothpaste and then not spitting out to leave the teeth lightly coated through the night.)

A new product that helps remineralise teeth is GC Tooth Mousse. See page 13 of this brochure.

GC Tooth Mousse is a topical, water based, sugar free creme that contains Casein Phosphopeptide – Amorphous Calcium Phosphate under the brand name of Recaldent. It helps remineralise teeth and is supposed to help with 'radiation caries'. Tooth Mousse can be applied at any time during the day or night. After cleaning teeth in the normal way, remove excess saliva from the mouth (via spitting, swallowing, or patting teeth dry with tissue) and apply the creme using a clean finger or cotton tip. It should be left undisturbed for three minutes for day application then spread around mouth with tongue and held for another two minutes before being spat out. Avoid food or drink for 30 minutes. Tooth Mousse can also be applied just before going to bed and the entire application can be left to slowly dissolve overnight.

It isn't sold in pharmacies so try this online shop.

I see them every 3 to 4 months and tell them off (gently) if they need to do better. The bad teeth get taken out by the oral surgery department, small fillings get done by the dentist, and the teeth get a descaling to bring them into good state before radiotherapy. Often my patients have not been to dentist for years and have no dentist! I find them one if they wish to keep their teeth. Works most times but sometimes when they develop decay,I wonder if I made the wrong decision and should have been more drastic!

It is a quality of life issue - the time spent on the teeth or wearing complete dentures for the first time - a double tragedy in my eyes.

I would be interested to hear all your comments.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello all,

Certainly is a good topic for discussion�.. I must say, I cannot remember at all any reference to my teeth, when told of the treatment recommended in my case. All the points raised by Eileen were categorically pointed out to me by my Consultant. At one point I had thought of going to America for treatment, but it was said Americans are more surgically inclined initially - then other methods follow. As I said I was fortunate, I did not require surgery � Radiotherapy only. My Medical Team were first class, and still are. Everything explained�. diagnosis�.. prognosis�... the after effects� long term effects but oddly nothing said about my teeth

My first visit to the Dentist after treatment, went well. Teeth o.k. I was a bit disappointed, as I had given up smoking (still have), I thought my teeth would become a nice white, but not so. I have now had my top four front teeth veneered and I�m very pleased. My Dentist would not do the bottom though, saying they would be prone to chipping. I would prefer to keep my teeth, but if I was in any discomfort or thought they looked unsightly I would have no hesitation in having them whipped out, as long as the dentures were put in right away (What vanity).

I,m with Mike on this one, a little knowledge can be very dangerous. Anyone who has the misfortune to develop a cancerous cell is unique, and has to be treated so. Everything has to be discussed over and over, until you are absolutely sure in your own mind it is right for you. Researching had me �**** scared.� I was reading things not relevant to my type of tumour at all. Really not healthy. Other than this forum, I actually stopped researching.

Hope you all had a nice Easter. I�m off to Abu Dhabi tomorrow for a few weeks � to visit my son, daughter-in-law, and lovely first granddaughter (only seven months).

Take care

Rosemary

Hi Guys, A very interesting posting this topic.

I was informed of what was going to happen to me and about Tracky ect but was in such a state it did not sink in.
I had looked on the Internet and download alot of information but NONE of it made sense until long after the operation what had REALLY hapened to me.
Dr J my teeth a sore point
Altough my Consutant now was not at the Hospital when I had my operation he insist on saying I REFUSED to have my teeth out before operation???
I DO NOT rember any such conversation neither does my x partner.
I am sure we would have discussed it and would of come to my own conclusion.
I have looked at my notes and there is nothing in there at all about me refusing.
I have told him on several occasion but he still tels his Student the same thing about me refusing to have my teeth out :banghead:
I keep quiet now as he is an excellent Consultant and treats me with respect so I should show the same although it still annoys me every time it happens.
Well I do fel feel better now for airing my views to the world
Hope my Consultant does not read it
well my funny of the week, Here goes:
I went out with a friend to meet his workmate for a drink, we were introduced and the first thing the guy said (in aloud voice) " CAN YOU LIPREAD" I rest my case.

Paul

OK, but can you lip-read?

Trust you pikeman
No but as I told him I am learning

Humour is a great medicine
Best wishes
Vinod