Gloria Hunniford's book....

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1

I have just spent a few days reading this book about her daughter Caron Keating, got it second hand off Amazon for 1p can you believe. I have always been intrigued as to why Caron went the alternative route, although still having some conventional treatments. I was surprised to learn she refused a second mastectomy with a recurrence in the other breast.

I found it very disturbing and quite harrowing. On a superficial level, most of us do not have a rather wealthy husband who can just give his job up to go with Caron where her whims took her and buy houses - to Fowey in Cornwall, near to me, for healthy air and away from the rat race in London. What I cannot understand is why she uprooted her family, with 2 very small children, to the other side of the world, to Byron Bay - a rather weird place on the North Eastern coast of Australia - far from her family and friends, where there is every quack remedy under the sun, and as she eventually found, many charlatans.

Some of the alternative treatments she put herself through, and was obsessed with, were to me quite bizarre. Electronic and sound therapy - Buddhist monks coming to live with her and incessant chanting, going out into the rain forest in the dead of night, besides the coffee enemas she gave herself every day - shades of the Gerson therapy. The Pooh lady who did colonic irrigation defied belief - a most unsanitary hosepipe and a wooden bucket in a hut! Having had many colonoscopies in hospital environments, I am surprised she didn’t have a perforated bowel. Then to uproot herself and family, yet again to go to Switzerland for some experimental treatment…words escape me.

I am though pleased she died at her mother’s home, as was her wish, since she was paranoid about hospitals and hospices. Her husband Russ was an absolute saint in his caring.

I have found this book a very salutary experience. The only comfort I have found from this book is that I do not look back on my life and try to find an answer, as she did, as to why I got breast cancer. Illnesses happen to all kinds of people… and no allopathic doctors, research scientists or philosophers yet have the answer. My way of dealing with bc is to live in the “now”, and accept the advice and treatments of my trusted doctors, which somehow Caron could not do - she was always searching for the miracle cure. Perhaps I live in a different universe to her.

I don’t wish to be judgemental, but did find Gloria’s constant harping on her beautiful, talented daughter a little hollow, and what a brilliant mother she was to her, when she could then put her down for her insecurities and fears. Thankfully, my mother died before knowing my twin brother got brain cancer and died at 50 yrs, and I got bc. But, she would never, for one moment, have ever discussed the fact that we may have brought our illnesses on ourselves because of our past history - and we didn’t take illegal drugs!

I will be interested to learn of other’s opinions - be glad to send this book to anyone who wants it - I certainly will not read it again. Just pm me.

On another subject, I have been invited to go to London to take part in a DVD for the National Colitis and Crohn’s Assocn - my husband has encouraged me to take part as there are not many people living with 38 yrs of this disease. I am now a little concerned as to what I should say beyond being positive (a word I know most of you hate)…trying to get my thoughts together about my experiences (some horrendous hospital episodes whilst living in Spain and holidaying at friends in Florida). I don’t want to be negative, but not quite sure how to pitch my story. Any advice? I think there are one or two women on this forum with both Crohn’s and bc, although I have no contact with them. Jane, Christine, and Mole, would love to hear your comments. Mole especially, can you give me some pithy comments?

Thanks for listening.
Liz.

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Hi Liz,
I read that book when I was first diagnosed (Jan 07) and I have to say it was (and still is) the most depressing book I have EVER read!!! It made me cry and I was thoroughly miserable the entire time I was reading it. It was so depressing I almost gave up half way through but was compelled to finish it- once I had it went straght to the charity shop as I didnt even want it on my book shelf- far too depressing!
If anything- it did me a favour really, I’m a fatalist and beleive everything happens for a reason and some things are meant to be. Caron showed me that if there was anything that could have been done to beat this bloody disease then she would have, because she did absolutely everything, therefore, thanks to her I do still have wine without guilt and dairy products and I’m not obsessed over what I will and wont do to stop my cancer returning. I totally accept that it is out of my control and it has helped me regain some sort of normality back in my life
Katyx

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Hi Katy - really appreciated your response as I too struggled to finish Gloria’s book and found it depresssing and heartbreaking. I guess most of us don’t have her financial resources to endlessly seek a cure, but even if I had, I doubt I would go to those lengths. Like you, I have accepted I had cancer and it may return one day, but there again, it may not and in the meantime I am not going to let it rule my life. Many thanks for your insight. I’m still drinking wine and eating dairy too! No guilt whatsoever.
Liz.

4

Hi Liz

I havent read the book but after reading your comments I dont think I want to. I always wondered why she uprooted her family her husband is a sant. Thank you for the insight to the book.

I have Crohns and BC as well. Crohns dx 15 years ago large bowel removed 13 years ago, BC dx Dec 07. For me constipation is a godsend at times.

Hope you are all well

Sharon

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sorry can’t think of much pithyness at moment due to exhaustion - I’m trying to help my 84 year old aunt get some help she doesn’t want e.g. with her hoarding tendencies, rebuilding her house, getting her to put her heating on etc. all from 80 miles away with a full time job. I am also trying to organise payment of all her bills and running 15 bank accounts. it’s getting on my nerves I am not meant to be a carer.

Apropos of healthy living, my aunt is living proof that you can eat any old rubbish, heat your home to minus 50 degrees and still live to almost 85 if you have a strong constitution and lived before central heating.

She has also convinced me if I needed further convincing that living into extreme old age is a bit of a bind

Good luck to Lizzie with the DVD, maybe tell it how it is but with humour - after all you have managed it for 38 years, and seen off a first husband who tried to murder you I seem to remember - or was it his next wife?

You also might be an inspiration to others, even if you may not think so

Mole

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Oh Mole

You have made me laugh! I have visions of your aunt in her house perfectly healthy and you running round driving yourself mad looking after her. My husband’s grandmother was like that. Drank G&T in copious amounts every night, suet puddings, house was so minging the bugs had gasmasks but she lived till 94. Here’s me, trying so hard to look after myself and look what happens! I agree with you about living to an extreme old age - at this moment I would confidently say no way do I want to be hobbling around in my inconty pads, unable to care for myself properly. However, ask me when I am really ancient and it may be different.

Good luck with your aunt and thank you for cheering me up on a otherwise depressing Saturday. It’s my birthday and I wish it wasnt.

Cathy
xx

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Hi All

I got the book from the charity shop last week- I am nearly 2.5 years post dx and I think to read it before would have been too hard for me. I have never read a more depressing book and stopped reading half way through.

My heart goes out to the poor woman and her family but she was diagnosed originally with a snall grade 1 tumor with no spread and onlly needed radiotherapy and a lumpectomy. She was advised to take tamoxifen but wouldn’t because she didn’t want an early menopause. Maybe if she had followed the doctor’s advice it would have not come back - who knows.? It just made me think that as muc h as I HATE tamoxifen I will persevere with it.

Love to all

ALise x

PS Don’t read this book if you are going through or just finished treatement as it will make you feel a whole lot worse.

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Lizzie,

Thank you for your very intelligent review. The book’s never appealed to me but your comments only confirmed what I’d considered to be a depressing tale.

Soon after I was dx in 2005 a friend sent me a book (can’t remember the title and I sent it back after I finally got around to reading it) about a lady who had cancer and she befriended another lady and they lived in each other’s pockets etc etc. I read the book after completing my 8 (I think) cycles of epirubicen. Had I read it before, it would have put the fear of God in me and no mistake! It was fiction, but was such a depressing read. When I sent it back to my friend, I suggested she get rid of it and definitely not lend it out to anyone else dx with cancer.

Cathy, happy birthday :slight_smile:

Alise and anyone else on Tamoxifen. My friend (59) is on Tamoxifen and has just completed a year on Herceptin. She tells me she has very few side effects, has worked more or less throughout, had her last Herceptin on Good Friday and flew out to Oz the following day for 5 weeks. From what I’ve read on here, it seems she’s one of the lucky ones.

Have a good weekend, everyone.
xx

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I have a cousin who is a hypocondriac (her mum is the same) and she goes down the route of all sorts of weird alternative therapies. For 4 years she has been visiting a bloke about 200 miles away every 2 weeks, this guy has his own clinic but is pretty much known as a charlatan. Unfortunately, there are always wealthy hypocondriacs like my cousin who are willing to pay for his services. I have looked at his website and I cannot believe some of the rubbish on there.

Anyway, the day after I came out of hospital after having my armpit cleared, she rang me to say she had a book for me. It was all about an Australian alternative therapist who had an abdominal tumour and who claimed she had come off chemo after 2 cycles and had cured herself. I hadn’t even seen an oncologist about chemo yet and my cousin was telling me not to even consider it! She also told me she had discussed me with her alternative doctor and he had said I got cancer because my breasts were full of aluminium; for £200 he would be happy to rebalance them and she asked if I wanted to go with her to see him! She then started going on about all the alternative treatments Caron Keating went for and I had to remind her she was dead…by this point I was furious and ended up putting the phone down as I was getting close to telling her to eff off.

I have another cousin who is an eminent oncologist and he said to me “0h dear, I think they see women like her coming. You would be better spending the 200 quid on something really nice for yourself”.

10

I have been seeing a reflexologist who is full of whacky ideas. In her favour, she does a brilliant job of reflexology which I find totally relaxing and dont care what its really supposed to do. When I told her I had was going for radiotherapy, she did a big sucking of breath and said “oh those rays are so harmful to your poor body” I pointed out that cancer was a whole lot more harmful! She also told me about a friend who when diagnosed with a malignant lump, decided against conventional treatment and saw a therapist who put her on a macrobiotic diet. She has still got cancer which has spread (what a surprise) but feels good in herself - I thought to myself, that’s when she can get off the toilet! The sad thing is there are so many people who are vulnerable, looking for the miracle cures and answers to problems.

cathy

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PS the mind boggles at how you would go about rebalancing breasts full of aluminium??!!

12

I found the degree of self blame that Caron Keating put upon hereslf one of the saddest things about her story. That coupled with the fact that she started questioning all her relationships…with her mother…with her partner included…looking in them for some ‘reason’ as to why she got cancer. I ended up thinking that Gloria Hunniford was an extarordinary mother in that she supported and supported Caron even when her daughter was being quite unpleasant to her.

I think though that Caron Keating’s take on living with breast cancer was just an extreme version of one of the popular perceptions of how you are supposed to be when you get cancer. And it continues in the way that Gloria Hunniford writes about her after her death…just check out her website for language which talks about her courageous ‘battle’ etc.

We hear a lot of claptrap these days about respecting people’s ‘choices’, and therby let stupid decsions go unchallenged. I think we should challenge the crazy end of alternative medicine and the hundreds of delusional sites which promise cancer cures and we should be campaigning for more regulation of such quackery, instead of colluding with the idea that we all are all free agents in ‘choosing’ how to deal with cancer, and that trying ‘anything’ can do no harm. As Cherub says some of the websites of alternative practioners are truly shocking.

I don’t particualrly think that if Caron had taken tamoxifen or had her second matectomy she would have necessarily survived her cancer, but it does sadden me that she became so obsessed with irrational thinking about the causes of her cancer, and that she sought so fruitlessly for a cure where it was evident none would be found.

Lizzie…great you are doing the Crohn’s dvd…I think you should ‘tell it like it is’ but use your wonderful humour. There is such embarrassment and silence around anything bowel connected so if you can contribute to more openness you’ll have done a good job.

best wishes

Jane

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I borrowed the book from the library and the positive thing it did for me was to convince me that hunting the world for alternative therapies would be a waste of precious time and money.For that I thank Gloria Hunniford.When this b****r has you firmly in its grip your best chance is with the doctors and current medical research.On another matter;those of us who are mothers of adult children cant help believing that our kids are beautiful and talented.I often beat myself up about being a bad mother eg when their dad was dying I once jumped in the car late at night,said to my son"Dont worry Mum’s coming back."Then I drove to a layby and cried my heart out.Just a few months ago that son now nearly 37[he was 14 and his sister 10 at the time]told me that he sat on the garden wall for an hour waiting for the car headlights and wondering what he should do if his dad died and how he would look after his sister.That broke my heart again.The point?I cant blame Gloria for idealising her daughter and trying to combat her fears.All the best to all of you.Love Valx

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I have read some of Lance Armstrong’s books and his mother was also amazing throughout his diagnosis and treatment.I think I will give the Hunniford book a miss though.

Jackie x

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Hi, i read the book when it first came out and was extremely moved by it, however it is now on my bedside table again because i thought it might inspire me, now having breast cancer and it certainly has inspired me, to vomit, I cant understand her dicissions at all, the book goes on about how she wanted to be there for her boys but she didnt take the treatment offered to her! the only bit i did find useful was the introduction when Gloria explained how she felt as a mum and daughter of someone with breast cancer, it did help me apprieciate how my mum feels as she is in the same position, but i wouldnt tell anyone with BC to read it!!!
Anna

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I’ve read the book too, some years ago now - and found it quite harrowing. Jane RA, I think you sum it up so well. So sad that Caron felt the need to put the blame for this dreadful disease on herself and in the process no doubt upset her whole family, who showed tremendous strength and support. They must surely have wondered whether any of those alternatives’ where of any use! I remember clearly when I was first dx in 1999, the Bristol ‘experience’ was big in the headlines - all macrobiotic diets and alternative therapies- glad I had the sense not to go down that route. I think there is nothing wrong with reflexology etc., and infact I quite often have this and Indian head massage, and it is abolute bliss - but in no way would I ever consider this as an alternative to chemo!!! You can see why people want to try all this, their desparation is such , and their fear so great, they will indeed try anything. But as Jane said, in the end it does not really matter whether you have had all the tradional treatment or not, in some people CA comes back, in others it does not - and sadly nobody knows which side of the percentage curve you come down. As far as I am concerned, I do put my trust in my oncologist team and hope they have the right answers at the right time.

And you are quite right Horace, mothers do love their daughters and think they are the best - nature’s way, I think.

Lizzie, I think you are doing the right thing with the Crohn’s DVD - just say it how it is - no need to dress it up and it may give others more understanding of this horrible condition.

Birgit

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I had mixed ideas whether to read this book. I picked it up at a boot sale last year for 25p. I seemed to be going through a stage of “depressing books” as my husband calls them. You know the ones with a boy on the cover and you know once you start to read you will uncover lots of really awful things that the poor child has endured. I also read the Sally Clarke book, god that was such a gross miscarriage of justice. Anyway I did have the Gloria book on my list of books to read. Then my mum was diagnosed and I thought maybe, maybe not. I think I will go with the maybe not as it seems that Caron didnt put her poor boys first in any shape or form. And before anyone jumps on me and says she had cancer, yes I agree but we as mothers do all we can to protect our children and be there for them. It seems Caron failed them by refusing tried and tested treatments. It is only my opinion so sorry if it upsets or offends anyone.

J x

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For a long time after this book was published, whenever I saw it in a book shop, I gave it a wide berth and then eventually "dipped " in and out of it, before finally plucking up the courage to read it in its entirity. Predictably I found it quite a tough read as Gloria Hunniford dosen’t gloss over the difficult bits. I identified with some of Caron’s feelings about her diagnosis (but have never blamed myself or endlessly sought reasons as to “why me”?, other than perhaps the initial questioning I suspect we all have, about whether there was anything I had done/didn’t do that contributed to the development of my cancer).I understood her need for privacy - I think you’re either comfortable with the wider world knowing about your health (or lack of it) of your’e not.Caron clearly wasn’t, which is why she stepped out of the spotlight and headed for Cornwall and Australia where she could remain anonymous whilst dealing with her cancer in her own way. Gloria’s pain is evident and I think she was as balanced as she could be in writing about a child you have lost -God know’s it’s the stuff of nightmares. Certainly the book is not recommended reading for anyone newly diagnosed with cancer and must be particularly difficult if ,like Caron, you have a small, “low” risk cancer.I felt compelled to finish the book once I’d started - if you’re feeling wobbly-give it a miss.Cherry

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Many thanks to all who replied with wonderful insights. Perhaps now I will get round to reading Musa Meyer’s book “After breast cancer”, as 5 yrs on from being dx and NED, I need a different type of book. It has been on my bookshelf for about a year, but somehow I just couldn’t bring myself to read it and felt I should move on.

Mole - the DVD recording is on the 21st April, so when you have a musing moment, you might think of something funny to say. At the moment, I don’t think recounting the episodes during chemo, when I had to stop my normal chemo, methotrexate, when I had to wear incontinence pads but still had faeces running down my legs (white trousers on!) and just sat on a wall in the local village crying my eyes out, is going to be helpful or inspiring. Luckily a neighbour drove by, saw me, and drove me back to the car park to get my own car.

What Gloria’s book did do for me though was to put into perspective that I did not cause my Crohn’s, or bc and I have nothing to be ashamed about. I used to believe that in some way I “caused” the breakdown of my first marriage, but time did show I was not at fault, my first husband was a psychopath, and nothing I did could have prevented his behaviour. What an incredible memory you have - although I was physically and mentally abused, I had no lasting physical damage - it was his second wife and two young sons he tried to kill, with a crowbar,and got a life sentence. I have been very happily married for 35 yrs to my 2nd hubby - a gentle giant who has always supported me and never made me think Crohn’s “was all in my head”.

Perhaps I will gloss over the negative times and concentrate on the positives - find the best gastro you can, understand that one drug is not always the one to keep the disease in remission, there are many to try, and you can live an almost normal life, with a disease that is not usually life threatening. Although I belong to the local NACC support group, they meet in the evenings in Plymouth, and I can’t get a ferry back home after 6.30 pm. NACC do a brilliant quarterly newsletter which details all the current research, new drugs, Q&A’s from leading gastros etc. and this alone is worth the annual subscription. Having never spoken in public about my disease before, and rarely in private, I am rather nervous about doing this, but there again I have never been to the moon either, and am not about to buy a ticket! I was asked a couple of years ago, during IBD awareness week, to be interviewed by the local newspaper, but was not happy about my photo being splashed around and get withering, pathetic remarks and looks from neighbours, so declined. This DVD will be put on the NACC website, so I guess will only be seen by those with IBD.

Sharon - sorry to hear you also have concurrent diseases. You did make laugh about constipation being a godsend. The only time I have had it was after a hysterectomy 17 yrs ago. I refused to take the laxatives because of my Crohn’s, and on the 7th day of no bowel movement, the matron of the private hospital stormed into my room with a rubber sheet and a length of hosepipe and gave me an enema - I bet she wished she hadn’t as she had to call for a nurse to clear up the mess as I couldn’t make it to the en suite loo! I hope you are in remission and doing well. I have just had an hour’s consultation with a Professor of Endocrinoloy, referred by my bc as there is concern over my continuing to take Arimidex. I have developed osteopenia, osteo arthritis in my hips, hands and feet, which is mainly caused by 30 yrs of steroids, but exacerbated by Arimidex. He sent me a copy of his report to my bc surgeon and said:“Mrs Clark has weathered a lifetime of Crohn’s disease and more recently breast cancer, remarkably. She looks fit and healthy for a 63 yr old and is justifiably well educated on health matters.” I cannot begin to tell you how comforting and inspiring those few words are and have given me optimism for the future, however long that may be.

Enough - I could prattle on all day. Just want to thank you all for your replies and the incredible support I have had from this forum. I wish there was a similar one for Crohn’s, but if there is, haven’t found one I feel comfortable with.

Liz.

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Hi Lizzie

I believe so much that with any illness the best most helpful accounts are those which combine the worst moments with the more upbeat pieces of information and advice. If you hide the story of your incontinnce with the white trousers then someone who’s just had a similar bad incident will simply feel sceptical and stop listening…well I would.

I think there are ways of using dark humour, of being open, of telling it like it is which can help remove the fear.

I really hope the dvd comes out well.

very best wishes

Jane