Can anyonr recommend books/periodiacals/ect/to learn more

Hi,
I’m new to these forums having recently been diagnosed and still waiting treatment. I thought I was a reasonably well read and informed sort of person but having trawled through some of the discussions on this and other web sites I realise how ignorant and mis- informed I have been regarding BC.
I realise now that I bought into the ‘pink, fluffy image’ that is prevalent amongst those who don’t have this dreadful, dreadful disease. I keep hearing from so called educated? people

continued. sorry slip of the finger.
that I’m lucky as this is one the better cancers to get(yuk) and is really treatable. I do know that treatments have moved on but this is said almost as an aside, ie there won’t be any real probems. The notion of recurence or secondaries is not (in my circle) really understood. I realise I didn’t know really about the effects of chemotherapy apart from hair loss and some nausea. I feel ashamed to have been so ignorant. Now that this has happened to me I realise, having gone through the initial despair/denial, that I want to become more full informed not just for myself although that’s a priority but also to start having a more realistic dialogue with friends/acquaintances. I’m interested in research(global and national) treatments and side effects, what’s happening politically, if anything!! I feel I’m starting on the road to a steep learning curve but I know I’ll deal with my own issues better when I become more informed. I am amazed at the wealth of knowledge amongst everyone here .
If you can point me in a direction for learning more I would appreciate it. I’ve been googling like mad to find information and have been on most of the obvious websites
but also feel I’d like to subscribe to periodicals etc.
Thanks and my best wishes to all
Trish.

Right here goes…I have gathered a library of breast cancer books since my diagnosis in 2003!

Absolutely the best book by a mile is Dr Susan Love’s Breast Book. I think the 4th edition is the latest. Its described by the New York Times as “The bible for women with breast cancer.”

Next anything written by Musa Meyer: After Breast Cancer, Living with Advanced Breast (and another one whose title I forget).

I think there is nothing in the UK which remotely matches the quality of these two authors. One UK general book is The Breast Cancer Book by Val Sampson and Debbie Fenlon but its not a patch on Susan Love for detail.

When it comes to memoirs I like Ruth Picardie Before I say goodbye, Kate Carr: Its not like that Actually (brilliant, just brilliant…I say this because the author’s feelings about living with bc are the closest match to my own of anything I’ve read.). I have great respect for Dina Rabionovich Take Off Your Party Dress and for Jane Tomlinson’s two books. All these women have died…but I’ve never found a realistic or balanced survivors memoir which works for me. Some people like Uplift by Barbara Delisnky but its too happy clappy for me.

When it comes to politics a recent US work by Samantha King called Pink Ribbons Inc challenges many of the myths associated with breast cancer and the whole ideology of breast cancer ‘survivorship’ but it is heavy going. Another US publication The Breast Cancer Wars by Barron Lerner is an interesting histoory of the development of US breast cancer activism.

Personally I’m not into the eat your way out of cancer literature, or the cancer is the best thing that ever happened to me literature…but I still have the books on my shelves…Jane Plant Your Life in Your hands; Lawrence LeShan Cancer as Turning Point, Rosy Daniel and Jane Sen (of Penny Brohn Centre) Eat to Beat Cancer. None of these my ‘cup of tea’ but interesting if you want to get into the he politics (or indeed into what I call the diet and positive thinking approach ot cancer). Personally I don’t like Gloria Hanniford’'s book about her daughter Carron Keating…but many do.

Oh I could go on…and in case anyone thinks I’m quite mad…I just happen to be someone who gets interested in particular issues and wants to know as much as possible about them. I care with a passion too about post 16 education, lesbian and gay rights and various mainstream political issues. Then I got breast cancer, and so it has become another academic interest with I follow with the same passion. I knew a bit about breast cancer before I got it, but my learning curve just shot up as soon as I was diagnosed and keeps going up the longer I go on.

Best wishes particularly to other mad information seekers.

Jane

Hi Patricia

I haven’t done a huge amount of BC reading (books are stacked up and waiting!) but can recommend Musa Meyer’s “After Breast Cancer” for factual merit. Both the Breast Cancer Haven, Cancer Backup and Breast Cancer Care produce regular newsletters. The Amoena magazine is worth a read and often has interesting articles in it. The US site BreastCancer.org is pretty good. You know how much information is available on this site, well there is considerable “amateur” expertise from the ladies on BCPals. There’s a magazine called ICON which I pick up now and again but it is one to which you need to subscribe i.e. not FOC. I am currently reading a book called What Can I Do To Help? by Deborah Hutton, so far very good and practical for those with BC AND their friends/families. The Breast Cancer Book by Val Sampson and Debbie Fenlon is one which I wish I’d had on initial diagnosis - would have been so much more useful to me back then with regards to expectations. If you think you’ll need/want a so-called reconstruction then I can recommended The Breast Reconstruction Guide.

I haven’t read Ruth Picardie or Jame Tomlinson’s books but a friend of mine has and she is a writer herself - she speaks highly of both ladies’ work.

I have read Seeing The Crab (got it second hand) by Christina Middlebrook (US), different but very good.

It’s Not Like That Actually by Kate Carr (UK) was very pretty good and expresses frustrations we can all recognise.

On the Cancer Counselling Trust site you can view interviews and download articles and I’d definitely suggest a read of After Treatment Has Finished - a very insightful article by a man expressing very much how I felt as a woman when I had finished my treatment. Many ladies on here have read it and found it very resonant.

On the BCPals site you’ll find some poetry and more BC, and general, reading recommendations, more than on here.

I sent for (free) Living and Working with Cancer from cancerandcareers.org but I haven’t read it yet.

If I think of anything else I’ll let you know, hope these help in the meantime.

Best wishes
D

Hi

Don’t know where you’re located, of course, but the Breast Cancer Haven(s) and Maggie’s Centres both have books which they are willing to loan if you don’t want to end up with a small library of your own!!! JaneRA has one and I seem to be growing one but it wasn’t my original intent …

D

Jane, Dahlia,
thankyou so much. That was exactly what I was looking for, something to get my mind engaged again. Having gone through the initial despair/denial stage, I now find I am becoming angry. Not so much angry that I’ve got BC(although there is an element of that) but angry that so many women are suffering, particularly young women who lives are being cut short. I’m angry that treatments which appear so barbaric are necessary for survival. I can imagine future generations looking back on this time with disbelief, as we look back on the historical aspect of blood letting and amputations without anaesthetic. I’m angry that we as a nation can find the moneyto go to war and bail out monetary institutions but not fund research for a cure or more humane treatments for cancer.
I’m also angry at the way I’m being patronised. When I was first diagnosed I remember the consultant holding my hand and saying: ‘Some people use this as a wake up call and start doing all the things they have been putting off’. I smiled dazedly and sweetly. Today I’m thinking ‘how dare you say that to me. You don’t know me. I’ve never been asleep. I’ve lived my life, my way, to the full ,and I don’t need a wake up call’. Sorry, I’ll stop. I can feel the soapbox in me coming on.

Jane: I started a thread asking how one stays positive and your reply started me thinking again and realising that there was nothing wrong with the way I was handling this disease and for that I would personally like to thank you. I wish there was a thread for academic debates about this cr***py disease. I know I need the emotional support that this site can offer but I need to academically debate as well.

Once again thank you both
Take care
my very best wishes
Trish

you do get told a lot of “common sense”. personally I hated people saying you must be positive, as I thought they were saying it for themselves rather than me. I aso think the treatments are barbaric, and surgery which is the best they can offer is the worst they can offer as far as i am concerned. Cutting bits of you off strikes me as entirely disgusting, and giving my consent to it struck me as completely against nature

Mole

Dahlia, sorry to be thick but what does ‘whisper back’ mean and how do I do it?
This is all so new but despite the scare I’ve decided I’m still the person I was before Dec 6th(diagnosis date)

Mole, I didnt mind them cutting bits off me. I’ve had other ops where they took bits off me and put them somewhere else but I do object to being treated like a victim
I agree, I think the word ‘positive’ should be banned
Thanks Trish

Hi

Yes, I’ve been told lately “it’s all about having a positive attitude” - so stuff surgery, chemotherapy and radiotherapy because we don’t need them, right. There a book called Pink Ribbons Inc. and one of the last chapters is called “The Tyranny of Cheerfulness” - great title.

Trish - whisper back is how you Private Message (PM) to people who have sent you a PM. You’re not being thick, some of us are old hands!

I’m with Mole, I still feel sick at the thought of having consented to have bits removed. There’s nothing left to remove now anyway, if anything more is taken I will cave in like a deflated balloon.

Grumpy Old Woman

In the scheme of things I haven’t badly minded having my breast removed. Its the chemo I find barbaric.

Great to have someone else to debate bc stuff with Trish.Mole and I and a few others have been at it (so to speak) for a while now.

And yes Dahlia a great chapter on the tyranny of cheerfulness

Jane…another grumpy old woman and proud of it.

Hi Patricia,

this is a very interesting thread. I think that knowledge is power and for many of us the more we know the better we cope because we give ourselves the opportunity to come to terms with what has happened.

My inclination is to stick to biology bearing in mind that treatments are improving all the time and prognosis statistics are always at least five years out of date.

I’m not sure that I can recommend any books particularly. Many of the books out there are aimed not at a readership with BC but a readership without BC. I read Ruth Picardie’s book ‘Before I say goodbye’ prior to being diagnosed with BC but it was so depressing that when a friend was diagnosed with cancer I hid it so that she wouldn’t see it on my bookshelves and try to borrow it. Then, when I was diagnosed with BC, I threw it away. I have tried to read Jane Plant’s book ‘Your Life in your Hands’ but have always given up in disgust at the lack of scientific rigour. If anything ‘[her book should not] be tossed aside lightly. It should be thrown with great force.’ (Apologies to Dorothy Parker for mangling a very appropriate quote.)

So, my advice would be to find out about the biology of BC, ask the medics lots of questions and get them to explain everything fully, make sure that you give yourself time to do non-BC things (you are a person and not a victim after all) and the best place to look for empathetic people who have gone through a similar situation is this site.

With best wishes,

Sue

Hi Sue,
thanks for your input. You are correct about the biological aspect. The list of questions I have grows longer by the day and longer as my knowledge increases.
God help the oncologist when I get to meet him/her. I only hope they haven’t got a really busy schedule that day cos I guess I’ll take up more than my allotted time.
The reason I am interested in international issues is that my sister works for the UN in Rome and the workforce there are allowed to use their private health insurance to be referred to centres of excellence in Europe and the USA. There seems to be anecdotal evidence that different countries deal with the various types and stages of cancers in different ways. I know of one lady who was being treated in Milan and was told they had come to the end of their options. She transferred to Paris, underwent a pioneering operation, further treatment and is still going strong two years later. Only one person,yes, but it does give food for thought.
I don’t have the luxury of private health insurance nor the luxury of working for the UN so am reliant on the good old British NHS.I don’t even live near a centre of excellence in this country being in a beautiful but remote part of the country(Lake District). Not sure its the best place to be when dealing with BC hence my reliance on this and other sites.
I’ve ordered some of the books recommended by Jane and Dahlia so I won’t be short of reading material. Am also off to Glasgow with friends to join in a Celtic Music Festival. Hoping to put the last two months in a box for at least the next five days.
Once again thanks for your input.
Take care and my best wishes
Trish

Hi Sue

Thanks for your recommendations and comments which I totally endorse.

It is empowering to be informed but I was beginning to feel like my whole life was defined by BC. I am an artist and everyone seems to feel that my art should now “reflect” my disease. Whilst it may help some people I really don’t want to start painting BC, as well as thinking about it, talking about it, eating to counter-act it…etc etc.

Sandie - (becoming a grumpy old woman)

I too had read Ruth Picaride before I got breast cancer and have read it since. I think her writing was really moving powerful and real.

On the subject of ‘positive thinking’…there’s a really good article by Sue Wilkinson and Celia Kitzinger which appeared in Social Science and Medicine Number 50 (2000). Its an academic piece so a bit hard going…but really intersting critique. After interviewing some women with breast cancer the authors argue that ‘thinking positive’ is an inaccurate description of how people really feel about having cancer, that it is a conversational nicety rather than an accurate reporting of how people really feel and think. They say, and I agree, that there is social pressure to pretend to be ‘thinking positive’ fuelled by the ‘self help’ movement. I managed to download it a while back but sorry can’t remember which site gave me free access.

Jane

Hi Jane,

I know what you mean about the pressure to ‘think positively’ although in my case I seem to have had to stop other people being shocked and frightened ,and looking at me with mournful expressions.

I’ve found the diagnosis of breast cancer to be a journey and as much an emotional one as a physical one. At different stages in that journey I’ve needed different things. At first I needed to know about the biology. I then needed to find people who could understand. [I occasionally try reading books written by people with BC but they don’t strike a chord maybe because everyone faces BC in a different way].

I think my journey has been:

Indestructable…Destructable
Invulnerable…vulnerable
me + CANCER!..ME!!! + cancer (or possibly minus the cancer)
Why me?..Why not me?

I’m working on the following not so much in terms of positive thinking but in terms of making use of my time, however long or short.

Alive… …Very much alive

(But I keep backsliding.)

Best wishes,

Sue

I don’t think cancer is a journey though it is often spoken of as one.

I think life is the journey, and cancer one of the nasty things encountered on the way…there are better nasties and worse nasties and the impact of cancer on any individual’s life depends on so many different things, not least the type of cancer you get and whether you’re likely to die of it…(thereby coming to the end of your life jounrney) quick or more slowly.

I identify with some of the books written by people (see my list above) with breast cancer but not others…I think we all yearn to meet others who will ‘understand’ and we can and we do but the individual expereince of having breast cancer is I think essentially lonely at least some of the time.

Jane

I’m thinking of donating most of my breast cancer books to Barts hospital, they already have a few of mine including an earlier edition of Dr Love’s Breast book - which people can take out on loan. You can spend a lot on them if you aren’t careful.

I like the ones aimed at doctors as they seem a lot more frank than the ones us patients are meant to read but even these are pretty out of date, the one recommended on general cancer themes Souhaimi and tobias wrote it if I remember came out in 2002

Hello

I’m with Jane, I don’t see BC as a journey, life is the journey. BC is a leg of the journey we didn’t plan but we have to “go with it” and hopefully that leg will be completed safely and we can continue with the rest of our life journeys without diversion. Or “deviation, repetition or hesitation!” to quote N Parsons.

Life’s journey, as with any journey, often has irritating diversions which throw us right off track and we have to take the scenic route in order to rejoin the main road.

Whooops, bordering on the wistfull …

A book I have found useful is ‘Foods to Fight Cancer’. It’s not like the Jane Plant book & others, but a list of food groups that have chemicals in them with anti-tumour properties etc, together with the science behind it. It’s very easy to read, and not in any way controversial. It doesn’t tell you to drastically change your diet, just suggests (everyday) things that you could eat more of, together with some general advice (such as eating both more & a variety of different fruits & vegetables, which we all know anyway but often forget).

Hi Patricia
I think I recommended this to you online last night, but my marbles are going, so just in case I didn’t, I have found one book particularly helpful. It’s “Cancer is a word, not a sentence” by Dr Rob Buckman. He’s an oncologist and he explains what you can expect from your treatment, dispels loads of myths and gives great advice about living with cancer in the future. I think his writing is great, very palatable and very human. It’s a book for anyone with any cancer and he explains the biology in a way that I can understand. There’s an excellent (and funny) chapter about miracle cures - he led a documentary team which was looking for a magic bullet for cancer among all the folklore (needless to say none found!) - and why conventional medicine is not an exact science, but better to follow it than overdosing on some spurious herbal or diet “cure”.* It’s straight-talking and a great resource.
Hope this helps
Sarah
****Roadrunner - I agree with you here!