CancerWorld
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.

quote:

The Mouth Cancer Foundation’s award-winning website(www.mouthcancerfoundation.org) 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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Note:
Cancer World includes in-depth interviews with some of Europe’s most influential oncology leaders, who are invited to comment on breaking news, discuss complex and difficult issues and share their experiences in overcoming personal and professional challenges as they have pushed forward the boundaries of their practice. The magazine also features interviews with people with a high public profile that have an important impact on cancer care – they shape public attitudes and influence how cancer services are delivered and research conducted.

Cancer World is published six times a year by the European School of Oncology with an average print run of 10,000 copies. It is distributed at major conferences, mailed to subscribers and to European opinion leaders, and is available on-line at www.cancerworld.org.

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

Congratulations Dr Joshi, Its good to see you getting recognition from yoyr peers for all that you do for us.
Well done also to everybody that was interviewed and gave such honest opinions of what is like to go through the treatment for Head and Neck Cancer.
Jenni

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.

I found that really interesting, thanks for posting it.

As Jenni said, it is good to see your efforts being recognised by a wider audience.

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!

Winnie,
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.

Leann

Dear Dr. Joshi,

There is no better person who deserves the recognition. The recognition could not have been confered on any one better as there is noone better. You are on the top and will always be so.
Lots of love and "Hugs",
Ananth

Congrats Dr J, I often feel very isolated by the aftermath of Mouth and Neck Cancer.
It took 5 years for me to get a Speech Therapist only to be told whats left of my tongue too fixed to do anythind.
It is so hard for me to start a converstion with anyone and many just stare at me NOT understand a word I say

Paul

Oops, only just seen this post and it's been running for ages. Well done Vinod, congratulations. With all the effort you put in, you deserve the recognition. Hagg.

Hi

Only just seen the post
I have read the article which is superb. hopefully the article is the tip of the ice berg and will be one of many.

Mel x

Hi Dr Vinod, have not been able to log in under Garance ?????
Great to hear your news.

Garance

Just found you am now a year on from horrific sugery and struggling its a year today

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,

Mimi

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 rest.love shirl xxx

Hi Tracy

Sorry to hear you have had such a bad time - do let us know more about yourself, as Mimi and Shirl have said, and perhaps we will be able to help.

I live in Leicester and work in Derbyshire, so not far from you.

Hoping to hear from you.

Best wishes

Gwyn