70495members
370824posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Five lessons I didn't learn from breast cancer

38 REPLIES 38
JJanet
Member

Re: Five lessons I didn't learn from breast cancer

Hi janeRA
I have just thought to have a look round the forums today after a long time away and found this thread that so fits with my current thoughts. My dx was Oct 30th and I find that pink oct starts in late August and goes (on and on...) and I find it quite stressful and distressing at times. I also have mycheckups around now, plus i have some recon stuff going on so when it might have actually slipped my mind it is difficult to see so many mentions of it around the place. i cannot just sit down with a trivial magazine- sometimes i like to worry about trivial c*** like whether i should be wearing a pencil skirt this season or a different colour of lipstick, it is a pleasure to "enjoy" that level of worry and pretend that all my worries are that size - only to have some Pink stuff and BC hype all over the place. I feel like staying in til the end of october and its all finished.
I approve of money going to BC charities, but i dislike the media spin. I dislike the way they oversimplify and talk of the "Allclear"
A few weeks ago i was talking to a young woman who was a few days away from finishing radio after chemo and a mast and had just found out there was no AllClear! How cruel is that!
I think i am angry about it because it makes BC sound such a doddle and then other people think my attitude incomprehensible and "wrong" (maybe i should just be positive and all would be Ok!)

The Norton book sounds good so i ordered it straiht away.

lyndu
Member

Re: Five lessons I didn't learn from breast cancer

And I should add further - in between making me laugh out loud, it made me think - good combination.

Lyn

lyndu
Member

Re: Five lessons I didn't learn from breast cancer

Rowena, 'Cancer made me a shallower person' is very funny, get it and read it - it made me laugh out loud.
Warning - non-cancer people probably won't find it quite as funny as I did.

Wonderful concept - from funeral orations, it's clear that everyone who dies of cancer had the fatal "she was so full of life" syndrome - well, it cracked me up anyway.

Lyn

belinda
Member

Re: Five lessons I didn't learn from breast cancer

Hi Rowena..Lopsided was a good book..although I wouldn't have given it such a glowing review...but a good book, worth a read.

vertangie
Member

Re: Five lessons I didn't learn from breast cancer

Ah I love timing... I just walked in from my last round FEC (hopefully last chemo full stop) and what do I find amongst the post... Clue: it was pink and had flowers on it. I admit the picture did make me chuckle but if you're already feeling p****d of with it DON'T open that one, it's more light hearted than some will appreciate (if I wasn't just so pleased to have finished the chemo I might not have appreciated it)

rowena
Member

Re: Five lessons I didn't learn from breast cancer

Hi everyone,

I read the review of 'Lopsided' and thought it sounded brill - though like Jane I wondered whether it was the reviewer or the book which was so good. Would be interested to hear how you found the book, Belinda?

I just love the title 'Cancer made me a shallower person', might get it just to display on my bookshelves!

Thanks for the thread, made me smile.

Rowena

Tinyperson
Member

Re: Five lessons I didn't learn from breast cancer

Until I read this thread I hadn't really thought of Pink October as anything other than the chance to give some money to Breast Cancer. I wouldn't normally buy a product simply because it's breast cancer related but Asda sometime do some nice T-shirts and I like to see what each year's t-shirt is like.

However it has now dawned on me that I was diagnosed with BC in October 2006 and then again with a recurrence in October 2007. Quite honestly I'm dreading October 2008 and buying pink will be the last thing I think of.

Hazel

lizziecee
Member

Re: Five lessons I didn't learn from breast cancer

Hi all - just caught up with this thread as I have been "Under The Duvet" (a great book by he way by Cathy Kelly, I think!) with a Crohn's flare and living on 3 bottles of Fortijuice a day....pity I don't like spiritis, well, they don't like me, as the drinks would taste a whole lot better.

I sometimes feel like writing to newspapers/magazines about the unvarnished truth in treating bc. I was assigned to an arrogant,patronising and rude Oncologist by my bc surgeon as "he is the best Onc we have at Derriford for bc". Well, he may be bright but has no personal skills whatsoever. I could not believe it when he said to me: "If you don't stop your methotrexate chemo for Crohn's whilst having FEC, you will die of septicaemia." He made no effort whatsoever to get peer reviews of my concurrent diseases and blithely said: "we will cross that bridge of a flare if it happens". No way Jose, I thought, and fled the room in tears, much to my husband's embarrassment. I didn't know how I was going to cope and emailed every major hospital I could think of in the US as we travelled to the US for some 30 yrs on business and had lots of contacts there - Mayo, MD Anderson, Cleveland Clinic, Johns Hopkins. etc. and although they all replied very quickly, said they had never treated a patient with those two concurrent diseases. I was in despair, not knowing whether to have the FEC chemo or not, and wrote snail mail to a Professor at St. Marks Hospital for Inflammatory Bowel Diseases in Harrow. He wrote back with experienced advice, copied the Onc and my gastro and said I must discuss his letter with both of them before attempting FEC.

When I went for my first chemo, I knew I had to see my Onc minutes beforehand for my blood test results, but couldn't face his attitude and I never discussed the Professor's letter with him, because I couldn't see the point. When I checked in, I asked the receptionist if I could see another Onc, even a registrar or house doctor, anyone but the Consultant. She didn't ask ay questions, or make a fuss, just told me to go and sit down in the waiting area. Within 15 minutes I was seen by a lovely young female GP who worked only one morning a week in the Oncology Dept - my lucky day! She was brilliant, sorted out a treatment plan with daily dexamethasone and Fortijuice, and somehow I got through those dreadful 4 months with her help. If I had had the mental energy I know I should have made a formal complaint against the original Onc, but needed my energy for myself, not fighting the NHS.

Mole - your posts really lighten my day...so laconic and pithy. Have you thought about writing an article for the media? We need people like you to tell the world that bc treatment is not "empowering".

Books - I am going to order "Cancer Made Me a Shallower Person" - sounds just like the book I need to read. Other side of the coin: when I was first diagnosed, a close American friend sent me an autographed copy of Alda Ellis's book "Beyond Breast Cancer - Our Stories of Hope and Courage". The blurb on the back cover was enough to put me off even opening it: "Sharing these stories of the women who have gone before us can light our way and give us hope"... I still haven't opened it. Well, the only people who can give me hope are well researched and intelligent, caring doctors. If anyone wants it, please PM me and I will post it on.

Jane, thank you for starting this thread - many of us are some years down the road from dx, and know what it is really like to live through horrendous treatment, the fear of a recurrence and possibly an early demise. I feel threads like this can put matters into perspective, without being maudling or self pitying.

Liz

rachy7
Member

Re: Five lessons I didn't learn from breast cancer

I am sick of celebrities and well known people saying how they managed to work all the way through chemo and look good. Now I have it said to me in the real world. Like she is more determined than you !!! I feel like crap and am bald and fat so work is not even on the agenda!! Sorry am having a moan

Rach xx

lizalou
Member

Re: Five lessons I didn't learn from breast cancer

This thread is so great and I'm excited about reading some books that actually sound like they reflect my experience...haven't found anything so far.

Pink October struck when I was hooked up to a drip having chemo, bald as a coot with huge burns from the chemicals up both my arms. I was reading a magazine sat next to my mum where I read "Yay! We can't wait for October when all those lovely pink good are in the stores - we love having so much to choose from from all things pink and it's for a good cause too!!!"

Mum and I nearly choked - I was so mad!! I wrote an evil letter and they biked me over an apology with a good basket of organic shower gel. Dear god!

xx

Jacksy
Member

Re: Five lessons I didn't learn from breast cancer

Only just seen this thread - I must've been away when it started. Thank you girls, gave me a great laugh, made me feel understood, and has given me a couple of new books to order.
love Jacquie

Molennium
Member

Re: Five lessons I didn't learn from breast cancer

you're right, snow white, I'm the wrong kind of woman too, I believe in women's liberation - I'm the wrong generation as the who so aptly put it, people try to put me down, talking bout my generation, hope I die before I get old

Mole

snowwhite
Member

Re: Five lessons I didn't learn from breast cancer

Mole - love your comments hate your nurses - so glad Jane that you enjoyed the book, although I haven't looked at it recently I keep it by my bedside to remind me that there are one or two bc people who understand.

I particularly need it just now as had a ghastly experience yesterday at PS consultation - one that is going to take me some time to recover from. On way home in car I said to my husband "I seem to be the wrong sort of person..." and was groping around for appropriate words to end the sentence, failed, decided I must just be the wrong sort of person. Then he said "you're the wrong sort of person to get breast cancer" and that seemed about right, and he added that they really ought to put a warning on the leaflets they send out calling people for screening: "Public health warning: if you are the wrong sort of person to get breast cancer then ignore this notice because nothing we can do will help you..." ...In fact everything we do will make you worse. And if you're not prepared to reverse from our presence on your snivelling nose prostrated with gratitude then please don't come, you've got to understand we are human too and we need patients who are willing to confirm our sense of self-worth, and when we say ask as many questions as you like, just remember, we don't mean it... oh god I'm off again

Molennium
Member

Re: Five lessons I didn't learn from breast cancer

I read a ghastly article today in the Barts annual report all about a woman with breast cancer treated there who went back to work really quickly. I was treated there as well, with the same breast cancer nurse. I got back to work months earlier than she did despite getting a wound infection after the surgery there, probably cos I didn't hang about being looked after by the same nurse.

This was easy as she told me straight away that she wouldn't be there for me as she was going on her christmas holidays. So when I went in on Christmas Eve, I met one of her colleagues who knocked off at three pm. Didn't see any of them for the week or so I was in there, they were too busy looking after themselves.

The woman in the Barts article was fortunate enough to be diagnosed early enough to miss the Christmas period. She loves going back as it is just like a family now. Well well I'd go a long way to avoid that particular lot of relatives. I must get the book you mention as I've certainly not become a better person, I couldn't as I was so perfect before.

ha ha ha

Mole

belinda
Member

Re: Five lessons I didn't learn from breast cancer

Hi Jane I have now got a copy of the 'Lopsided' book..please email me if you'd like me to send it on to you..think I'll have finished it by end of next week..Belinda

JaneRA
Member

Re: Five lessons I didn't learn from breast cancer

Well Cancer made me a shallower person arrived today and I have read the lot.

Yes it is funny...really funny...and really sharp and poignant too. When I read stuff like this which I can identify with my heart soars and I don't feel so alone any more. By contrast reading the latest edition of Vita with the usual run of cancer made me a better person/got me promotion/ sent me on a holiday of a lifetime stories makes me feel angry and alienated. I think probably the cancer community needs both kinds of accounts of living with cancer.

Jane

JaneRA
Member

Re: Five lessons I didn't learn from breast cancer

Belinda

I somehow missed this in the Observer...brilliant...just my thing. I will order. (though maybe its just the reviewer who is brilliant!)

Jane x

belinda
Member

Re: Five lessons I didn't learn from breast cancer

Hi Jane I wondered if you saw the review in today's Observer..pasted here..for Meredith Norton's book, Lopsided, How Having Breast Cancer Can Be Really Distracting..published by Virago..think I might order it.

Cancer is capricious. It picks on the young, the funny and the bright as much as on anyone else. Like a primitive god, it is random, disorderly and self-regarding. The growing number of cancer memoirs represents an attempt to impose order on lives taking off in unwanted directions. They tap into a curiosity to know what the extraordinary - but also utterly ordinary - business of cancer is like, what it means to live more openly than the rest of us with death and chance.
Which is not to say that all cancer memoirs are equally illuminating. Cancer also stalks the smug and the boring, those who think that wheatgrass juice or belief or their sheer specialness is going to get them through. Meredith Norton slyly alludes to this when she describes trying to read Lance Armstrong's bracing cancer book during her own treatment for third-stage inflammatory breast cancer. 'I bet,' she says, contrasting his success in all fields with her own feelings of inadequacy, 'he doesn't still debate what he's going to be when he grows up. I doubt that he looks at his own kids and wonders when someone else is going to pick them up.'
At the beginning of her memoir, Lopsided, the African-American Norton is living in Paris with her French husband and infant son. Concerned that one of her still lactating breasts has become 'huge, throbbing, covered with a red rash, and radiating enough heat to defrost a frozen lamb shank in 10 minutes', she sees four doctors in France, who all dismiss her symptoms. She flies home to California for a fifth opinion, where she gets a prompt diagnosis and is given a 40 per cent chance of still being alive in five years.

Norton's engrossing memoir is droll and sometimes prickly. On hearing the results of her cancer test, she notes that two strangers had just witnessed something more intimate for her than losing her virginity or giving birth. 'Death is really the only thing you do alone, no matter who is there to hold your hand. These spectators watched as I visualised my death, with probable accuracy, for the first time. And the picture was so banal.' She slips in her insights quietly, with novelistic precision.

The writing is determinedly wry and unsentimental, but real feeling seeps through. Her portrait of her affluent, noisy family is vivid and affectionate, conveying their warmth and support along with their rectitude (her father, a urologist, still corrects his adult children's grammar). When the family is gathered around the dinner table arguing loudly about how many crackers her brother can eat, her sister leans across and whispers: 'Please don't die and leave me alone with these people.'

Underlying the playfulness, though, there is a dragging sense of sadness, which no amount of humour, bathos or what Norton calls 'my own school of psychology, the School of Repression', can extinguish. She was in her thirties when she developed cancer, still convinced she was destined for great things when she could get around to them.

Her husband Thibault, complete with a French aristo sense of entitlement summed up by 'his unpronounceable, mostly silent-lettered medieval name', wants his wife's illness to teach them something, to supply some sort of revelation. 'Instead,' Norton acknowledges glumly, 'there we were, with the same annoying habits and bad manners, ungrateful, pessimistic, undisciplined and bored'. The only revelation seems to be that 'there might be no lesson in this experience; it might just suck'.

ForumMember
Member

Re: Five lessons I didn't learn from breast cancer

i bought a pair of flip flops in M & S for my hols and didn't realise till I got home that they were in aid of BC. Daft thing was they hurt like hell and I could hardly wear them LOL!!

cherub
Member

Re: Five lessons I didn't learn from breast cancer

I get fed up with all the pink stuff too - I was looking for some oil for my garden bench in a shop the other day and they were selling pink gardening tools and brollies for BC. Last Christmas I decided it would be better to give £25 to my local Maggies as the staff there provide such a lifeline for people who are affected by cancer. For anyone who is affected walking in off the street, they can just have a cup of tea and have a quiet place to think about their troubles. They also have volunteers doing stuff like tai-chi where you can just drop in and participate without booking. I was in there a few weeks ago and a very concerned looking man came in with his young daughter to get info on lung cancer. He looked as if a weight had been lifted after one of the staff assisted him. I figured my 25 quid was worth it. I would like to be a volunteer but it would mean not being able to use the centre and I'm not ready to cut myself adrift yet.

snowwhite
Member

Re: Five lessons I didn't learn from breast cancer

So agree about the glamorization. As for researching the causes - why don't they? They do a bit, but they seem to concentrate on the causes within our bodies, because we may have the very smallest amount of control over them. But not much. What if it turns out that pollution (plastics, phthalates, hormones in cattle, god knows what) really are a big factor? I can't think how to fix that without returning to the Stone Age, which I would quite like to do, apart from the fact that I imagine I would miss books, but maybe there would be plenty of compensations.

How about one of our nice pink prostheses in the M & S collection bucket?

belinda
Member

Re: Five lessons I didn't learn from breast cancer

There's a website about pink products, google thinkbeforeyoupink.

annamarie
Member

Re: Five lessons I didn't learn from breast cancer

I have been totally amazed recently by the amount of articles on sale supporting breast cancer, yet when you ask the retailers they can not specify how much of the purchase price goes to the named charities, since my diagnosis i have bought said ribbons bracelets etc etc, but a year on have decided enough is enough, these companys seem to play on our insecurities
Anna

JaneRA
Member

Re: Five lessons I didn't learn from breast cancer

I'm rather looking forward to the arrival of the 'shallower person' book now.

AJXXX...like you I was diagnosed in October...towards the end of the month in 2003. In my newly diagnosed hyped shocked state I couln't understnad why suddenly there seemed to be so much media yuk about breast cancer...I'd managed to avoid it before. Though I did in the 1990s sometimes wear a pink ribbon (one of the original ribbon ribbons not a ghastly twinkly version you get these days.)

I have disliked Pink October more each year since, and what I really think about some of the stuff that happens would quickly get censored here. AnneG...I disagree...I think 'Pink October' with its glitzy consumerism and culture of corporate giving, its images of smiling cheery 'survivors', glamorises and distorts the reality of this disease.''Raising awareness' sounds laudable but all it achieves is packing breast cancer clinincs with the worried well in November.

In a nutshell don't buy the pink food blender at the Pamapered Chef party...give the money direct. And perhaps we could open a competition on the best things to put in the collection bucket at M and S.

Jane

EamesK
Member

Re: Five lessons I didn't learn from breast cancer

Hi Jane,

I have read the "shallower person" book and laughed out loud at many of the cartoons. I liked the fact that it was a book that simply voiced many of our fears - being sick from treatment etc. It was also not schmaltzy either, would recommend it to anyone, but especially those that go on to have secondaries. My copy has been passed around many people.

Kate

AnnaG
Member

Re: Five lessons I didn't learn from breast cancer

Hi ladies.

thinking about what's been written on this thread, I just had the thought that it must be a good thing that public awareness is raised with regard to BC, because that in turn leads to more donations for funding into research into the causes of BC and better treatments ( and ,surely, they do have to improve! ).

Before my dx in February I had NO IDEA how frighteningly common this disease is in the western world. This has ,in fact, been the biggest shock to me in all of this journey and I think the government needs to put more money into research into the causes so that the rate drops rather than continuing to rise.

So, try to look at the "Pink" ribbons and special events in a more positive way, even though they may not have any benefit for us directly,they may be of huge benefit for the next generation. Let's join in with the campaigns to make the government and the public more aware. The fewer people have to go through this dx and treatment the better!!

Best wishes to you all,
Ann G. xxxx

belinda
Member

Re: Five lessons I didn't learn from breast cancer

Hi Trish, I too have bone mets, which were diagnosed in 2003, lots of fellow stage 4 friends have loved the comic book. Belinda.

trishg
Member

Re: Five lessons I didn't learn from breast cancer

Hi All

God i thought it was just me didnt like ribbons etc. I was diagnosed in 2005, had all the treatment etc and have just found out i have bone mets hip and spine. While i think its a good thing if more people check themselves because Kylie has had bc i remember watching the programme she made about it and thinking, ok she has gone through the same as me but hasnt had to worry about money, finding a parking space within a mile of the hospital, (in fact i think the chemo came to her ) she could take as long as she liked to recuperate without having to go to occupational health and was living in france with a gorgeous bloke. Jeez reading that i must be cynical, better invest in the comic book.

Trish

belinda
Member

Re: Five lessons I didn't learn from breast cancer

Hi Jane, I haven't read the Engelberg book but I have seen a couple of her cartoons, very black humour, I think you would like them.

Gardenia
Member

Re: Five lessons I didn't learn from breast cancer

Hi Jane et al,

I do think it's very funny the idea of battling/fighting cancer.... Yeah right!!!

As for pink ribbons, races, afternoon teas, ummm not into that either.

Problem is that people think it's becoming fashionable with media playing a major part and adding glamour to it through
the likes of kyliebloodyminogue's hair colour "after" bc and "prophilactic mastectommy gave me fantastic boobs" and other stupid statements...

As for me no matter what stage/grade/age, etc, it is really bad luck and a spade upon your head for life(?!)

Carpe Diem,
Helena

snowwhite
Member

Re: Five lessons I didn't learn from breast cancer

Hi Jane, all

"Cancer made me a shallower person" - I read probably a couple of years ago now and I laughed out loud all the way through - what therapy. It is better by far than Cancer Vixen, I thought. Miriam Engelberg came over as a human being.

I loathe all inspirational literature, stuff written to buck me up by people who haven't had the experience, I loathe Pink October, I loathe the commercialization of cancer, the politicization of it, I loathe badges and ribbons and any suggestion that by all this "action" we can make it better, it is just displacement activity.

Do give "shallower person" a go, I hope it gives you as good a laugh as it gave me. But I am rather shallow...

juliet66
Member

Re: Five lessons I didn't learn from breast cancer

Jane,

I am sorry about crossed wires earlier. I too get embarrased by Pink October. It is ridiculous really but for the life of me I just cannot wear a ribbon. I also will be looking at the book-cancer made me a shallower person. Sometimes in the midst of all this shallow is good. julie

JayelleBee
Member

Re: Five lessons I didn't learn from breast cancer

Hi All

Jane sorry to but in on your thread but wanted to share this smile re the dreaded Pink October

I was initially dx in Oct 03 and was of course acutely aware of the "Pink October" campaign. Following my appointment which confirmed the need for a mastectomy my Mum and I went for some retail therapy. At the till in M & S there were buckets with big signs "Please make a donation... etc" for their "pink" fund raising. Well Mum and I looked at each other and disolved into fits of laughter as I said "I dont think they want what I'd like to donate but it would be easier than the op"
Totally ireverant I know but a sense of humour kept us going and I still cant look at a collection bucket without laughing.

All the best to all of you

Jackie

ForumMember
Member

Re: Five lessons I didn't learn from breast cancer

I hated Pink October last year. I was in the middle of chemo, no hair etc, and felt like i had unwittingly fallen into a reality TV programme. I was even asked [by someone I hadn't seen or spoken to for years] to go to a Pampered Chef party in aid of BC and do a talk about my DX. I politely declined on the grounds that I'm not that into kitchen gadgets.

Don't know how I will feel this year but have a feeling it won't be much better.

AJxxx

Gardenia
Member

Re: Five lessons I didn't learn from breast cancer

Hi Jane,

ummm not into cartoons either.... will try the other one.
Regarding this thing I do prefer a rational, logical approach rather than some pinky, bubbly,life changing bla bla bla thing.

I'm not a cynical person but I am very sceptical (not the most likeable ones though...)

Take care,
Helena

rachy7
Member

Re: Five lessons I didn't learn from breast cancer

Pink October ? What is that ? Sounds nasty is it catching?

JaneRA
Member

Re: Five lessons I didn't learn from breast cancer

Hi Helena. Yes it is on amazon. Just realised its a comic book..like another called Cancer Vixon...so I probably won't like it cause don't like cartoons particularly!

Welcome to breastcancerworld. I don't do positive thinking/visualisation or alternative therapies either (nor being brave, being a survivor, battling or fighting cancer).

best wishes

Jane

Gardenia
Member

Re: Five lessons I didn't learn from breast cancer

Hi Jane,

read none as I am still getting acquainted with my bc...

'm not into positive thinking/visualisation/alternative therapies, etc, etc but the one called Cancer made me a shallower person... I'm curious. is it on Amazon?

Thanks
Helena

JaneRA
Member

Five lessons I didn't learn from breast cancer

(and one big one I did)

is a new book by US journalist Shelley Lewis. The cancer memoir genre is pretty overcrowded and these days you have to be a jounalist and have a slightly different take on breast cancer to get published I reckon.

Lewis' book is a slightly irreverent romp through some of the myths about having breast cancer.Spot on I think in not seeing cancer as a gift and disliking the term 'survivor'. Also a very readable anaylsis (which I think the author got from the more academic book by Samantha King called Pink Ribbons Inc.) of the problems with 'cause marketing' and the pinking and consumerism around breast cancer. Anyone awating Pink October with dread will enjoy this.

I like the way the author is aware that breast cancer isn't one disease...that yes many (herself probably included) live after breast cancer for many years and the experience doesn't necessairly in the scheme of things touch them that much...and that yes too many are still dying of breast cancer...and for them soft focused talk of cheery survivorship is anathema.

Lewis' style is slightly irritating at times and her dislike of on-line support forums even more so (!), but an interesting read. I'm awaiting the delivery of another memoir..called Cancer made me a shallower person....

Anyone else read either of these books?

Jane