Tag Archives: Awareness

What to do about 'The silent cancer killer'

Inflammatory Breast Cancer Association

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The video that made

 

me write the book

 

Some time ago the publishers, Anshan, saw this video

 

Consequences

They were so concerned they wrote to me, asking if I could write a book for those with Inflammatory Breast Cancer (IBC), explaining

  • the processes that happened to all breast cancer patients
  • highlighting the differences for IBC
  • what happens during treatment.

Simple things, in plain English, that might help those with any breast cancer, particularly IBC, understand what was going on.

Normally they publish serious medical books written by eminent doctors.  But they had had great success with a book written by a patient about dealing with pain – and realised there were patients out there who didn’t want all the technical jargon, but just wanted to know about the ‘little’ things doctors brushed aside.

Although it wasn’t a ‘happy’ subject, the book almost wrote itself.  All I had to do was remember what happened to me when undergoing treatment – and in particular what puzzled me – rather than what the doctors expected would be of interest to me.

Every patient is different, but there are so many little things we breast cancer patients – and in paticular those with IBC – want to know.

I finished the book sitting up in bed waiting to have an operation.  I had got on with the writing as I didn’t think I would be able to sleep.   But at 3 am I wrote ‘The End’ and went off to sleep like a baby.  The nurses said they had never had such a relaxed patient, and the operation was a success!

More details from publishers: Enhanced by Zemantahttp://www.anshan.co.uk/ecomcart/

Is this book on Inflammatory Breast Cancer any use? Or will it be useless?

If you are going to spend your hard-earned cash on

this book, will you like it?

Or find it useless – flippant – superficial?

Well, if you are a patient, I hope you will find helpful, useful information – with some humour, in this layman’s book on Inflammatory Breast Cancer.

And if you are one of my favourite nurses – you will have a wry smile at the way I talk, and thank heaven not all patients were like me!

This is written from a patient’s viewpoint.  So don’t be shocked by the nicknames I gave some of my medics.  Or the fact that I litter the book with names of commercial companies that made clinically-trialled products that helped me.  Delicate souls will be horrified by the use of company names, but doctors and nurses have no hesitation on giving out names of drugs, and those are made by companies who measure their profits in BILLIONS – not ordinary millions.  So why shouldn’t we be given names of products that can help with the awful side effects of these drugs?

If you are a doctor, and treated as a Higher Being,  I might not give you due deference you expect  – especially if you were ‘Dr. 30-second’ or ‘Pompous Professor’.

And if you like to blind us with science, you won’t like the 17 page Glossary.   I have just been reading a book ‘designed for patients’ which thinks it can get by with an eleven- yes, 11 – word Glossary.

If you are a nurse, this is NOT a medical text-book.  You will scream at the way I re-name medical procedures, and question the way You are taught to treat us.  And ask why a Multi-disciplanary Team NEVER includes the most important member: the patient.

Cancer is a frightening condition;  Inflammatory Breast Cancer more so than many.  So you must excuse us if we get stroppy, and use black humour to keep us going.

You and the Team are there to give us the facts – I tried to remember what I was feeling at the time – and the sometimes silly things that were bothering me, when I should have reacted differently according to text-books and nurses’ training.  But then we are human, so sometimes don’t behave the way we are told to.

And TLC is sometimes totally forgotten in medical training – but we respond to this far better than being told  “YOU are only a patient”.

I have NO medical training, but justify writing this book because I can call myself an ‘Expert Patient’.

Has this been endorsed by a British Hospital? Whew!  After comments about some hospital treatment I received, and after the things I have said about superior treatment in European hospitals –  not B  likely!

But if you like Christine Clifford Beckwith’s black humour and her take on situations cancer patients find themselves in (well, you’ve got to laugh or else you would cry), then I hope you will like this book.

http://www.amazon.co.uk/Inflammatory-Breast-Cancer-Explanation-Support/dp/184829039X/ref=sr_1_1?s=books&ie=UTF8&qid=1283185964&sr=1-1

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Easy-to-read, compassionate guide to Inflammatory Breast Cancer

INFLAMMATORY BREAST CANCER.

VERITE REILY COLLINS

KEY SELLING POINTS
  • Compassionate guide for suffers of rare cancer.
  • First book on the subject.
  • Easy to read, serious issues treated with humour.
BOOK INFORMATION
ISBN: 9781848290396
Pub Date: August 2010
Format: paperback
Extent: 144 pages
Inflammatory Breast Cancer (IBC) is a highly aggressive and thankfully rare type of breast cancer, which is not yet widely recognised both by the public and the medical profession.

When a patient presents to her GP, there is often a misdiagnosis in the first instance. This is because the symptoms include swelling, redness and heat in the breast, but often no discernible lump. Consequently the condition may be only diagnosed as a less serious dermatological problem.

The author is herself a survivor of breast cancer and can therefore write with expert knowledge and experience. She discusses with compassion, insight and humour everything a person ought to know about IBC –

initial fearsdiagnosis – treatmentoperation – post-op care. She discusses the different forms of treatment, and also the side issues – where to find support from carers and friends, what to eat, how/where to go on holiday, etc.

A valuable resource of information both for the patient and the professionals involved.

Of course the book also tackles the scientific and medical issues and the various drugs used in the treatment, but Verite writes throughout in a clear, simple style that enables easy understanding of the more complex details.

There are many books on breast cancer, but this is the first to specifically discuss inflammatory breast cancer. It is a guide book that will be immensely valuable to IBC sufferers, their carers, family and friends, and to GPs and oncologists around the world.

CONTENTS; 1. Introduction 2. What is Inflammatory Breast Cancer? 3. Diagnosis 4. Help – what should I ask doctors and nurses? 5. Where do I find sensible website info? 6. Operation 7. After your op – returning home 8. Treatment after the operation 9. How will I feel? 10. Chemotherapy 11. Radiotherapy 12. Hormonal drugs 13. Handling side effects from chemo and hormonal drugs 14. Complimentary and alternative therapies 15. Why have massage? 16. Now I want to know – where to find help 18. Carers and friends – how they can help 19. Food, weight gain/loss, what can I eat 20. Take a holiday – but where/how? 21. Doctors are humans – how to deal with them 22. Having fun – where to go for information on what’s good 23. The help minefield 24. Regaining my life – and handling change 25. Contacts, organisation, charities, international agencies and other helpful people 26. Index
This is what the publishers say – I say that this book should be issued with a health warning, as I AM NOT MEDICALLY QUALIFIED.

But I wrote the book from the heart, trying to tell readers what they MIGHT expect, so that treatment didn’t come as a shock.  But also, where I could, suggesting ideas and products that myself and others had employed, to try and make the treatment experience easier.

When I was treated, I found that the Internet was incredibly helpful – so I have tried to include as many approved web addresses as possible, to make it easier to find things out.  Readers can use the book as a ‘shopping list’ of contact information.

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Breast Beating – a new type of book on breast cancer

Hurrah for a change from the usual ‘type’ of cancer books

Not many people  can advocate a new treatment – then years later, after reviewing evidence – change their mind.

This takes courage, and Michael Baum has it in spades.  He showed this when he dared to challenge Prince Charles, and stood up to the scorn poured on him by the world’s alternative medicine practictioners.

In his fascinating and inspiring book, Breast Beating, he tells the story behind the hype.  And, as he says, it is “A personal odyssey in the quest for an understanding of breast cancer, the meaning of life and other easy questions”.  Just a simple book then.

Er, actually no.  He takes you behind the scenes into the fascinating world of cutting edge medicine, in his quest to give his patients a better quality of life.  Questioning, talking and observing, Michael never stops in his desire to do the best for his patients, and advance our knowledge of breast cancer.  He sometimes comes up with theories, which he admits are challenging,  but is open about what he is hoping to achieve, and never too humble to learn from others – even non-medics.

He pokes fun himself when describing the ‘Golden Finger’ award.  Originally this was a joke presentation to him from his students at the end of a course.  With Michael around, you had to be careful, and he had the bright idea of gilding the plaster hand with its outstretched finger (classic rectal examination pose), mounting it on a plaque, and presenting this for a student competition.  This grew, became more important, and one day when he had moved on he was surprised to see a student’s CV listed  The Golden Finger Award.

Sometimes he mixed in more exalted circles, and describes how Diana, Princess of Wales visited one of his wards to find a patient had just returned from an operation. “HRH stretched forward to hold the old dear’s gnarled hand at which the old dear woke with a start and without missing a beat smiled from ear to ear and said “Allo Lady Di watchyer adoing ‘ere then?'”

There is lots more, especially on his work on the ATAC trials (Arimidex, Tamoxifen Alone or Combined).  Although I wasn’t his patient, I happened to mention that I had had very strong and horrid side effects from both these drugs – whereupon he spent hours sending off emails to see if he could help me.  But that is typical of him.  He was instrumental in developing Art Therapy, and movingly describes its effect on both his patients and himself – I am told that he used his own money to get the first programme up and running, so not only his patients, but many across the world have benefited.

Laughter can be a powerful medicine, and Michael gives us this in buckets.  On returning from the launch of Breast Beating, I thought I would just dip into the book.  3 am came,  I decided I really should go to bed;  what medical book does that normally?  But I was laughing out loud at his quirky observations, and feeling so much better as a patient (although sadly not one of Michael’s).

So enjoy reading a bit of history, a part-medical textbook and a description of Michael Baum’s theories about life.

Published by Anshan Publishing ISBN 978-1848290426 £30.

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Is this too much information?

Facebook, Inc.
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Latest story from Association Press

If you thought there was enough personal information floating around on Facebook, I wonder what you think of this?

Latest posting is a apparently a campaign designed to raise awareness about breast cancer, asking women to update their status with one simple word: the colour of their bra.  Give them their due, Facebook Inc. says it hasn’t been able to find out who came up with the idea.

Andrea Rader, a spokeswoman for the Susan G. Komen for the Cure foundation, said the group was not behind the campaign but called it “a terrific tool for raising awareness.” She added, “We just hope people act on it — get educated, get a mammogram.”

Me?  after hospital treatment where one feels one loses one’s identity in the necessary factory-assembly line of cancer care – do we really want the world to know what colour is our underwear?  Am I too sensitive a bunny?

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