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July 27, 2007

Comments

Sheelagh Barron

I have come to the conclusion that there is often a sensitivity gene missing in people who are employed by all these centers... I believe a pre condition of working at the centers should be some experience of what they are dealing with. I can recommend the lONDON HAVEN in Fulham...they have a wide range of alternative therapists and manage not to be patronising.There seems to be a widely held view that we consumers of cancer care should be grateful to the charities...Time to be unfashionable I say and point out what a bad job a lot of them are doing. If someone as articulate and knowlegeable as you can't get the help you need, what hope is there for the frightened and poorly educated? Hospice care in the UK may be gold standard, but everything else on the journey is poor. Where is the joined up thinking?

barbara

Can't say about whether therapy helps for families living with cancer, and you seem to be doing a great job with yours, so not trying to persuade you! but it helped us all when our teenage son beame depressed, although we have good communication at home. Somehow they were able to put their finger on the root of the problem, which of course didnt change anything and yet helped immensely.

dina rabinovitch

Heard Julia Neuberger on Woman's Hour this morning saying that what's needed is more people who've had cancer talking in groups with others - which I agree with, it's why the online forums are useful: mostly, what you want is practical advice about what works, I think.

gemma

I have to say i didn't find counselling any major help when my mum was first diagnosed, the main reason for this is I was recommended a book which was emblazoned on the front "from the authors of Death and Dying".... somewhat off putting as my mother was and is very much alive!!!! My mum finds it more interesting and boosting talking to the other women in the unit she's being treated in and it usually has less to do with Cancer and more to do with life in general. Perhaps one day we both might go down the counselling route again but at the moment I think me and my brill mum will stick to the dvd's, scrabble board and retail therapy!!

Marilyn

I was so grateful for the telephone counselling support I received from Chai Cancercare when I had my primary breast cancer diagnosis 10 years ago, and tried to encourage them to set up some direct services in Manchester, with no success, unfortunately.

But since my secondary breast cancer diagnosis (bone & liver mets, October 2003), I've found, like so many others, that I want regular & direct contact with women in my position, rather than counselling. Of course, it's nice to know that I (and my loved ones) can find a sympathetic ear at Chai, or at my local hospice, but I don't seem to need that right now, almost four years into the final two years of my life.

Instead, I'm part of a "virtual" international support group who have become less virtual -- we get together locally, regionally, nationally and internationally whenever we can! I'm so lucky to have very good support at home and from friends & family, but that group takes the isolation away, and gives me the extra boost I need to face my cancer journey.

curlykate

I've also found the internet chat rooms very helpful and made and sadly lost brilliant friends through this disease. Meeting some of then
tomorrow infact as they are now 'real' friends and not 'virtual' anymore.They and my real life friends and family are my main support.
I have not found counselling helpful this time but have gained a lot from counselling in the past so maybe it is me that has changed.
Although I did go to a conference last year where one of the speakers said that everyone with breast cancer should have 'access to a trained psychologist and not just a counsellor'!!
I've found that now I've come under the care of the hospice, I get so much better and quicker care which helps a lot but still have to ask for things which i think should be offered automatically eg just found out on friday when the occupational therapist phoned to organise a wheelchair that I could get a special mattress to help with the pain from my bone secondaries. So why when I used to get visited by the district nurses last year who knew I was in so much pain that I was not offered that then!!
It does feel you have to have huge degree of knowledge and determination to get the help you need and are entitled to - so how do people who are not so articulate as us get the standard of care they need?

Dina rabinovitch

Thanks for writing Marilyn and Kate - and love and good wishes to you. love, Dina

grannyp

The London Haven is brilliant and doesn't push anything at you that you don't want: I can confirm that. Good massage etc etc. A shame you're so far from it. But it's less than five minutes from Fulham Broadway station, so not so bad. Chief help for me - earlier - long before the Haven existed - was meditation/relaxation. The kind of stuff you can also do at home in bed when you can't sleep. Even if you still can't sleep you end up beautifully calm and woozy. There's a no-nonsense Western system called Autogenics, which used to be offered free to cancer patients by the wife of the man who pioneered the system in England. (But that was 25 years ago, so God knows.) You could get the British Autogenic society on line and check that out. I still need and use the method, to this day.

Dina rabinovitch

thanks P, will check out...

Susan Gibbons

I've had a very positive experience of Chai - without having the counselling route pushed at all.(I was already "doing" counselling at the London Clinic - urged by my oncology nurse). I didn't even have to prove to Chai that I was Jewish! Joining their yoga group helped me feel that I was taking some independent steps towards responsibility for my well-being and it was good to talk to other women in the group who were also being treated for breast cancer.
The yoga teacher, Barbara is excellent and the session always includes meditation and relaxation. I have also enjoyed some brilliant aromatherapy massages at the centre. Give them a go - they are lovely, warm people who really do care.

Dina rabinovitch

thanks susan, i absolutely agree - the chai folk certainly are lovely and warm, and they care very much - i just think in certain circumstances practical help is the most help of all...

Tigerlily

Hi, I've only just come across this site after reading your story in The Guardian. There is a method of healing called the Body Mirror Healing System and its founder, Martin Brofman, healed himself of cancer when he was only given a few months to live. His website is www.healer.ch and there is a great message board on it http://bodymirror.proboards42.com/index.cgi?board=general where a few people have posted about breast cancer and working on healing it. Also his personal story of healing is very intersting http://www.healer.ch/transformarticle.html
I hope this is useful x

sue

Body Mirror System - Martin Brofman in my experience is a closed system of healing. I worked with martin for 2 years and when I challenged his authority was asked to leave - you can see others who have also challenged him on his message board in the "dumping ground" and banned from his site. Proceed with caution.

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