Hello Tracy, I am sad to learn of your horrid year. I feel sure tho you will find some words of comfort from sharing with others on this site, there are so many extraordinary people here with life changing stories, gives me an appreciation of how less fortunate others are sometimes.

I really want you to have a more pleasant year ahead, and feel part of a family here.

Best wishes Nigel

Hi Tracy

You're not alone. I've been in a couple of online support groups and a "bricks and mortar" one, and I like this one the best. Each of us has had a turn on the head & neck ride (worst...amusement park...ever, BTW), and we're all here to help you through. Don't be shy.

I'm nearly 4 years out and still have questions.

Julia (and Flappy)

Hello All

I would like to invite 3-4 members to attend a head and neck cancer media event on Monday 30th March between 11am and 1.45pm in London being organised. We intend to make journalists more aware of mouth cancers and the pyschosocial support that our members need. It will help increase the public's awareness of this 'cinderella' cancer. We are inviting Dr Gerald Humphris (University of St Andrews, Fife), who specialises in psychological needs in oral facial cancer to address the briefing.

I would like to have some patient and spouse members at the event to allow the journalists to speak directly to survivors of head and neck cancer about the social isolation and despair of living with mutilated faces and struggling to talk, chew and swallow, and the constant fear of recurrence. I really think this will add a lot of value to the event.

Please let me know (email: info@mouthcancerfoundation.org ) if you would like to assist.

Best wishes

Vinod
-
Dr Vinod K Joshi
Chief Executive
Mouth Cancer Foundation

Vinod i would love to help,its jst such a long way for a short time.

liz

Hi Vinod, dont think I can help here really. As you know I'm not that mutilated and although my eating has suffered a bit I'm one of the luckier ones on the forum. The only worry I have is of recurrence but such is.....
I hope you get some volunteers though, it sounds like a really good idea. Hagg.

Good Morning Vinod,
I think you may have something of a problem here because those who would benefit most from, and have the most to offer at this kind of event are the least likely to feel comfortable at attending; particularly where the press are involved.
The more extrovert group (to which I belong)are quite happy to talk about the problems but don't give in to the psychological pressures which torment the lives of many.That does not mean that we have no worries about our condition, we have but don't allow it show in the same way. I regularly see the spectre of recurrence, which I don't suppose is too surprising when one considers that in the last five years I have had seven biopsies and five operations for mouth cancer (four of them to remove tumours) When I join others for a meal I often feel cheated that I can not enjoy the food in the same way as those around me, I no longer have the self confidence which was an integral part of my life up to March 2004 when I was told "you have cancer"
I could go on; but sufficient to say that I have always had a rather stubborn nature which hitherto has not allowed surmountable difficulties to stand in my way.
The contents of this posting contain a good proportion of the moaning I have ever done about my problems so if you feel I have anything to offer at this meeting I would be only too pleased to attend.
Keep Smiling
John

Hi Vinod

Great to see an opportunity to increase awareness of head and neck cancer.

Generally i feel that i got away fairly lightly having had surgery, but avoiding radiotherapy.
I have had some problems with lack of confidence with the usual fears of recurrence and living with uncertainty.
There are some residual physical problems, but i am able to live a pretty normal life, for which i count myself very lucky. Having said that i would be happy to help if needed.

Judy

Hello All

We had a very successful head and neck cancer media event on Monday 30th March to make invited journalists more aware of mouth cancers and the pyschosocial support that our members need. It allowed the journalists to speak directly to two survivors of head and neck cancer about the social isolation and despair of living with mutilated faces and struggling to talk, chew and swallow, and the constant fear of recurrence.

The journalists who attended (and some who were interested but couldn’t make it) have asked us if we could help them locate some head and neck cancer patients for case studies for various women’s magazines. Those specifically mentioned were: Bella, Red, That’s Life, and potentially the Daily Mail. The journalists for these magazines are looking for women aged 30-something and 40-something and wish to have a picture for the article.

Would any of you be able to help with this?

Best wishes
Vinod

Hello Vinod

I would be interested in being part of the articles for the women's magazine. However I am just starting 6 weeks of hyperbaric oxygen treatment for the extraction of one of my teeth. I'm not sure if I would be available if they wanted any info immediately but put my name forward if they want a 41 year old,non smoker, non drinker who should never have got this dreadful illness.

Sammy.

There are so many good comments here.

My dad had his tongue cancer removed about 3 weeks ago and he is fine (Yay!!!)

Immediately after the op it was difficult. His throat was very sore and he couldn't chew but we found that pureeing meals helped him get the nutrition without pain.

He says the worst thing wasn't the pain as he knew that would wear off. It was the dribbling and sounding drunk ("pissed without the pleasure" he called it). Now, 3 weeks on the dribbling has stopped and he only slightly slurs his words.

I have my dad around for the future so it has been worth all the trouble.

It is essential that the awareness of mouth cancer be raised as unless you have been a "victim" you don't even know about it.