Have just finished reading this book and its the first book I’ve read so far that has truly impacted with me. I think it was the interveaving of personal stories together with hard toface facts that resonated so much for me. It just’felt’ true. I know that man y of you who are further down the line than I am will have come across most of the issues in this book but for newcomers like me it was like a breath of fresh air. I’ve read many of the ‘facts’ previously but I suppose I’m the sort of person who, until the words take on an emotional meaning for me then they remain somewhat ‘abstract’ I also find it sad that that I now understand that discussions of a ‘frightening’ nature have somehow become taboo on this site. I wasn’t around when this happened but it does make for a somewhat ‘lonlier’ place for me.
I haven’t started treatment yet so am aware I’m still in limbo but some of the things I need to talk about are not concerned with actual treatment they are more to do with emotional issues. I’m not denigrating ‘cyber hugs’ maybe one day I may come to rely on them who knows but they don’t work for me now. So there seems no place to talk about things that go round in my head.
Getting back to Musa Mayer, I feel a developing sense of ‘liberation’ knowing and truly understanding that frequent testing from now on will not affect survival rates.
Also to qoute ‘being diagnosed for cancer is like stepping out of time’ which sums up how I feel at the moment. I feel like I’m inside a bubble, I can see and hear life go on outside, but I can’t reach it. Just a simple observation of where I am at this moment in time. Friends and family can’t bear to hear me talk like this so where do you go? If you’ve read this book I’d love to hear from you. JaneRA where are you? You recommened this. Thanks
Anyway just thought I would share this. Who knows where it will lead.
Dr Susan Love’s book is next on my list. Have a mile and a half to trek to nearest PO as book wouldn’t go through letter box so I’m getting exercise as well. Can’t be bad
Best wishes to all
Trish
Hi Trish
Here I am! I’m so pleased you liked Musa Meyer’s book. It is indeed a breath of fresh air. Susan Love is also good, but in a different way…and it is indeed a BIG book!
I know what you mean about cyber hugs and their limitations! I have always just wanted to talk and talk and talk some more about cancer, what it means, how its portrayed, myths, misconceptions etc. I’ve been lucky in meeting women through these forums who feel similarly. Lucky too that my partner and a few precious friends can talk in the way I want to talk about cancer
I’m not sure that discussions of a frightening nature have become taboo on this site particularly but I do agree there are certain ways of talking about cancer which are more socially ‘acceptable’ than others. I’m fascinated by the reasons why this is so.
I’ve been banging on about some of these issues for nearly 4 years now and its always great to meet someone who shares my interest in them.
very best wishes as you begin treatment.
Jane
I am going to read Musa Meyers book too,thankyou for highlighting it ,will let you know my thoughts when have read it,sounds like an excellent read…the quote .‘being diagnosed for cancer is like stepping out of time’ is just as it is…D…x.
Longden, hope you enjoy? it as much as me. It’s quite an easy read in the literary sense. I picked it up and couldn’t put it down but in another sense it provoked questions which are still reeling round my mind. i’ll be interested to know what you make of it. Also if you get to read Susan Love’s book I’d like to know what people think of that. Have just started it so that will be another story.
Take care
Trish
Please can you tell me where you bought Musa Meyer’s book? Is it easy to get hold of?
It sounds like a very good book for when treatment has finished and you are wondering, ‘what now’
Thanks,
Hi jenna
I ordered it from internet ‘amazon uk’. I just typed authors name in search button. came within 3 days. Good reading hope you find it interesting.
Trish
Just a note - she’s Mayer with an “a” - and yes, she is a good writer.
She’s also written a book on living with metastatic disease, and another memoir, “Examining myself” about her own experience of breast cancer.
Lyn
If anyone is interested in Musa Mayer, her special interest is advanced breast cancer and the website is: advancedbc.org
Jenny.
I may get this book but is it about life after treatment? I was sorting out books the other day and have quite a few which go from DX right through all the treatements etc. I dont need another one like that but something about living after treatment would be good.
Trish you say ‘discussions of a frightening nature have become taboo on this site’ I dont agree at all. Have you gone on the secondaries forum? Or even the younger womens forum.
I feel this site is encouraging ladies with secondaries to have more of a voice which can only be good news.
Personally i feel i can talk about my real fears on here and no one is critical they infact are understanding.
I am sure the moderators and staff welcome us being ‘real’ and wouldnt for one minute expect us to talk nicey nicey.
Personally i prefer ‘real’ hugs. I have so many friends who have BC, had coffee with one today. I dont know if it is just her as she is a huggy lovely person or the fact we have been through this ‘crap’ together but the hug was special a sort of ‘i understand ya fears’ one.
Take Care and Enjoy ya reading.
Rx
Hi Trish - I also got the Musa Mayer book (After Breast Cancer) from Amazon - been sitting unopened on my bookshelf for months, but somehow I always seem to find other non bc books more enticing. I did buy the late John Diamonds’s 2 books when I was first diagnosed, and found them enlightening, although they did not address breast cancer per se. 5 yrs after dx, perhaps now is the time for me to read it and move on.
Coincidentally, a close American friend has just sent me a signed copy of Alda Ellis’s book “Beyond Breast Cancer”. It is published by Harvest House Publishers, may be available from Amazon UK, or Amazon USA. The blurb states: “Sharing these stories of the women who have gone before us, can light our way and give us hope”. She and her mother both had breast cancer.
I wish I had found this site when I was dx and going through surgeries, chemo and rads, but I was more focused on my concurrent Crohn’s. It has though, been a life saver. I don’t have anyone I can talk to in depth about bc; my sister and friends just give me platitudes and I find it very isolating. I don’t want to bore them with my feelings, so I come on here and the US breast cancer org site, where there is a wealth of up to date information about new drugs etc. I have a number of good American friends and find they are so much more open that us “uptight” Brits.
I haven’t personally found that there is a subject I cannot discuss on here. There is always someone who can identify with whatever concern is bothering you, beit factual experience or emotional, no matter how trivial. JaneRA is an absolutely brilliant mentor - intelligent, erudite, knows her facts and tells it straight. Hope your halo is spinning Jane! You have always been an inspiration to me, and I am sure, many others on this site.
Take care Trish and hope your treatment goes well.
Liz.
Hi Trish - Just read your posting, and as I see several ladies above have already said, I do hope that you will feel able to be totally honest whenever you are writing here. Goodness, if we who are all going through this together cannot express our most inner most fears and concerns here, then where can we turn. Some of us are lucky indeed to have family and friends with whom we can have those conversations, others are only “allowed” to be positive, and that can be a very lonely place to be. So what are we talking about - well I guess the bottom line for everyone of us is “am I going to die from breast cancer, and if so, how long have I got”, quite apart from the “what is my body going to be like after this, how am I going to cope with all the changes, and the treatment, how will I change, how will my relationships change, will I still feel sexy and desirable, Will life ever be “normal” again - the whys, the whens the what nexts”. Well, the list is endless, and slightly different for all of us. But this is, and must be, a safe place for all of us to come, and find friends and support. That’s from when we are just wondering whether we do have breast cancer, through the shock of having our worst fears confirmed, going through all the treatments, and for many going on to live beyond that time fortunate to be cancer free, but for others, living with secondary cancer and all the added challenges and fears that that brings. This is a safe haven for us all. Everyone will find someone here who relates to having breast cancer in a similar way, be it with cyber hugs, facts and figures, tears or hope. We tend to join in with the threads that suit us. Let’s stay honest, stay real, and stay together! Glad you have found us. Sarah xxxx
Hi Trish,
Interesting comment about the bubble. When diagnosed I felt not so much in a bubble but as though there was a glass wall invisible but separating me from the rest of the world. Over time that feeling has gone probably because the cancer hasn’t returned. If it does return I may well feel that the glass wall has returned too but I think I’ve also come to feel that there are lots of people this side of the wall - not all with breast cancer or even cancer - because bad things happen to other people too.
Do we have discussions of a frightening nature? I think we do sometimes, but not often and probably not enough.
Sue
Hi everyone
I think now that my choice of the word ‘frightening’ was inappropriate. When I re read my own post in light of your comments I see that. Perhaps if I explained more clearly. When i was first diagnosed I went into a sort of ‘freefall’ convinced that, with my life’s experiences , this was the beginning of the end. I also realise now how ignorant I was about BC.
I spent days and nights reading all the posts on here(including some archive ones) before I even plucked up the courage to register. Having done that I then agonised over my first post. Was I saying the ‘right’ thing. i’ve come to realise that there is no right way to deal with BC, we all have to find our own way, the way that works for each of us as an individual.
At the beginning, friends and family were supportive but since then, because I,ve had surgery and my prognosis is reasonabaly ‘good’ they assume that I will just get on with my life as before(being seen as a strong person) I find I can’t, not yet anyway, I realise that I am geographically isolated and I suppose because I live on my own(husband died four years ago and munchkins have flown the nest and living their own lives) that i am probably spending too much time ‘contemplating my own naval’.
I didn’t mean to denigrate ‘cyber hugs’ perhaps that was another choice of inappropriate words. when i first joined it was lovely to open the laptop and read some many welcoming comments> i felt truly supported. Thank you for your comments, they have given more ‘food for thought’ and for me personally anything that makes me stop and think is good.
Take care all of you. This site is full of amazing women with a huge wealth of expertise and knowledge
Best wishes
Trish
Reply to Liverbird’s query - Musa’s book is based around interviews with about around 20 women (and 1 man) and how they managed living with metastatic breast cancer, mainly in their own words. There are also some fairly frank discussions around death and dying. Most of the contributors were drawn from a listserv bc support group, so there is perhaps a bias to computer-literate women, most of whom wanted to be well informed about their treatment (and my impression is that even now, that’s much more common in the States than here) Even on my first time round with cancer, I found the book reassuring, even though I didn’t have mets or even a particularly poor prognosis - for me, it made it much less frightening to know others had been there before and how they managed.
A couple of years ago I decided I was an ex-cancer patient and weeded my library, so I gave my 2nd edition copy away to a local information centre. I still have the first edition, and there is some discussion about treatment, but even for the second edition that part will be out of date/not necessarily accurate for the UK. (Disclaimer - I’ve met Musa a few times - but I would still think she’s a good writer if I hadn’t!)
I was a bit previous in my weeding, sadly - diagnosed with another primary in December, I’m back in the system…
Lyn
My books just arrived,ordered it from Amazon,now let me get that rotten ironing done and start reading tonight,D…x
Debra,
hope you enjoy. I was a bit apprehensive posting about this book cause I’ve been told in the past I have strange tastes in reading material so I’ll be interested to know whatyou make of it.
Trish
Trish
Glad you enjoyed the book; I did too and it was the first of its kind that I have read. Currently reading Dina Rabinovitch’s Take Off Your Party Dress concurrently with The Anatomy of Courage. Then I have a choice from Dr Susan Love, Pink Ribbons Inc or Musa Mayer’s recently updated book on Advanced BC. My biggest problem is finding time to read, although I don’t have children I work full time and sometimes wish for a bout of flu just to get some quality reading time! Be careful what you wish for … but then last Friday I wished for a Premium Bond win and yesterday the postie delivered £150! The power of thought eh?
Hope you are doing okay; it certainly sounds as if you feel “strong” from your reading. I’m like you, a bit isolated, 4 miles to the nearest PO.
Happy reading
D
Hi D
Good to hear from you again. I never know where people disappear to on this site. I think I’m just getting to know people and the thread comes to an end or so it seems. Glad you enjoyed it too. It was the first book to make a real impact on me. I’ve read Dina Rabinovitch and whilst it is well written in a moving way, because my children have flown the nest, I couldn’t identify with it as well as Musa Meyer.I’m currently going to bed with Dr Susan Love (metaphorically speaking) and have ordered Pink Ribbons Inc. I only hope I’m in when postman delivers cos trekking to PO is not my ideal way of spending time.
I’ve a lot of time on my hands, perhaps too much at the moment. I took early retirement from teaching in Sept with the view of having some time out and possibly travelling. I spent some years teaching in Africa and was planning to return before the ‘zimmer frame’ years became a reality. I certainly did not anticipate spending retirement the way I am at present. Not sure about being ‘strong’. I’m still learning to take each day as it comes and trying to make the best of it.
Whereabouts do you live? I’m in rural Cumbria near the Lake District. Beautiful scenery but rather parochial in outlook.
I enjoy discussing books so let me know what you think of the others. We seem to be reading similar stuff.
Best Wishes
Trish
Trish…absolutely loved the book. It was a breath of fresh air…all the things that go around your head but you keep to yourself are spoken about openly in the book,and you dont feel so alone knowing so many have the same concerns…I also like the way the subject is so real,ie its told as it is…great if you want to know as much as possible,which I do…D…x
Musa Mayer’s book is the most sensible I have read for women post diagnosis and treatment
Mole