I wrote a long post asking if anyone knew books which shed light on living with secondary cancer arising from recent posts on what low priority is given to this in favour of primary breast cancer and its treatment. I then clicked on the wrong key and lost it before I could post it to you.
So…
Are there any good books out there? Or books with good sections/chapters in at least?
If not, why don’t we write a synopsis together and approach a publisher to get a social/scientific/medical writer to write it? perhaps with contributions from some of the members of this site…?
In looking around, I came across this DVD which has been produced in Alaska by a film production company sensitive to and experienced in breast cancer matters which recounts the experiences of women living with secondary cancer and includes interviews with oncologists and hospice doctors. I thought it might be worth viewing: check out… betweenus.org/quiet_war/index.shtml
If you watch it or already have, please let us know what it’s like and please in any event post answer to my questions 1. and 2.
Hi Jenny I haven’t heard of the DVD.
I have Musa Mayer’s Advanced Breast Cancer, A Guide to Living with Metastatic Disease.
It’s available on Amazon and I’ve also seen copies on 2nd hand book sites.
Just a few of the chapter headings,
Voices of a Forgotten Population,
Dread, Uncertainty and White-Water Rafting,
The Problem of Knowledge: Doctors, Information-Seeking and Statistics,
Living with Side Effects and Symptoms,
Light and Shadow: Stories of Remission, Work and Identity.
I have got so much comfort and information from this book. It’s so much more than just a book of medical knowledge and stats, it covers all aspects of how we can live our lives with secondary cancer.
It also follows several mets patients and their families.
Belinda.x.x
Hi. I checked out the bcna link and was told I wasn’t autorised and needed to login. So I nosed around the site and found this:http://www.bcna.org.au/images/stories/pdf/messages\_advanced\_cancer.pdf
which is the little booklet you mentioned, I think. I’ve read it off the screen from cover to cover and, like you, will read it again and again. www.bcna.org.au is a valuable site to explore. This booklet is available off the secondary menu option.
I’ve just been looking through my copy of Musa’s book and I feel perhaps I should mention although I find it a very uplifting book death is openly discussed, particularly in Chapt 11.
Chapt 12 however is ‘‘Still Here, The Anatomy of Courage’’ so it’s a book you can read in sections rather than cover to cover and parts can be skipped or read at a later date.
Just adding this because I’m remembering how I could only tackle, take on, so much when I was first diagnosed with mets.
This is great stuff girls… I shall look at the sites mentioned above… I agree though that you need to dip in and out when you’re ready to tackle the next subject heading. We are all different with this - some might like to have the whole thing laid out before us others try another way… there are so many and statistics can all go wrong or right whichever side of the line you land.
It will give me something to do when I have no energy except lying down sort.
Yes Musa Meyer’s book is excellent. I also think her comments on bcmets.org are brilliant. Why isn’t there anyone in the UK as good at writing about cancer?
I suspect the difference is that in America the patient pays for treatment and has much more involvement, so personal research is very intense and detailed. I am always amazed by how much information they seem to have and how often tests are carried out.
Thank you for this information, I’ll see if I can get a copy of the book and I’ll have a look at the websites.
I was diagnosed at Stage IV and all the books I could find in the shops assumed that you have a primary diagnosis. Some even had chapters on awareness and checks - bit late once you’ve been diagnosed! Most of the information did not apply to me. One book in particular had a chapter on secondaries, which was only ONE page out of the whole book! At the other end of the scale there are general books about copying with dying but there isn’t enough for those of us in the middle ground - incurable but not on our deathbeds quite yet.
I think there is a market for a UK centred book about all aspects of secondary bc.