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Issue 20, September 2007 - October 2007
58: Patient Voice

Don’t Look Away
Don't look away: when the cure is disfiguring and disabling the care must be supportive and sustaining
In the second part of our series on Living with the consequences, survivors of head and neck cancer talk about the social isolation and despair of living with mutilated faces and struggling to talk, chew and swallow. Head and neck teams will fail their patients unless they go beyond check-ups for recurrence, and address their patients’ needs for support and solidarity.

The Mouth Cancer Foundation’s award-winning website( contains human stories from the UK and around the world. Most message board members are grateful to be alive. But they also detail years of pain, disability and indignity.

Vinod Joshi also believes more could be done. “At the moment, the only real support these patients get after treatment is follow-up in the hospital tomake sure that they haven’t got a cancer coming back. There isn’t very much support to assist them in getting back towork and in financial support.Nothing to give them a circle in which they can form a community to support one another and get away from social isolation.”

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Last edited by drvinodkjoshi
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Well said.

I think if you asked my mother what has been the worst part (so far) she would say the not being able to eat / taste / sustain herself. The it would be the speech. Before all this started, my mother used to go give talks to various groups about Charles Dickens and other topics and now she can barely speak properly without dribbling or coughing.

I would also add that both my mother and dad (her carer) felt isolated once they had stopped radiation. One minute they were there every day and the next thing they we sent home with a feeding machine and boxes full of Jevity and more or less left to get on with it. She still hasn't really had any speech therapy or detailed nutritional information.

She has been to the support group Croakies and felt that useful, but other than that, they just get on with it.

Thanks for your dedication to the cause Dr Joshi.
Winnie, perhaps you could get in touch with a dietician through you mum's GP, we found ours extremely helpful, she also put us on to a speech therapist, they both visit regularly now and have been excellent and not only for advice on eating and speaking and have also been able to explain the wheres and whyfores of various aspects of Bill's treatments I have found puzzling.

Dr Joshi, I echo 200 mins!
I found that I actually had to demand certain types of therapies. Not that primary doctors weren't wonderful. But I constantly had to inquire about new and different treatments.

A huge thank you to you Dr. Joshi, most people don't understand this type of cancer. And we tend to recede from public because of all the new diabilities we have. I know it is harder for me to accept than for some of my friends. But the outside world just stares at me when I talk. I say something to them if they could understand it.

Oh Tracy!

I'm so sorry that you didn't find us sooner. We would have helped you along the way. Lots of comfort as well as common sense and some humor here! It's not too late - let us know something about you, what you've gone through, how you're feeling right now and what you think the future will hold. Big job, huh? Just do it in pieces or whatever you're up to. You've reached out; don't let go.

Take care,

hi tracy
so glad you found us,as mimi said let us know a bit about you and how things are going and if we can help you in anyway with info we will be more than happy to do so.we are like one big family from all over the world and we all support each other and if you are going through something you can be sure someone has walked down that path and can help plus we have our wonderful dr joshi who can also find information for you and a lot of the time he can put our minds at shirl xxx
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
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: ) if you would like to assist.

Best wishes

Dr Vinod K Joshi
Chief Executive
Mouth Cancer Foundation
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
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.

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 Coffee
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.

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.

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