Having just read my way through this whole thread I’d like to add some comments/observations which have occurred to me along the route.
I have, through my primary DX and treatment (2006-7) and now secondaries DX and treatment (begun July 2009) for bone mets. found the BCC site a great help and support.
I agree that many of the aspects of media coverage, charitable fundraising and social perceptions around BC are packaged in either frothy pink ‘girly’ imagery or - worse I find - the vocabulary of battle and courageous acts, which come particularly hard on those days when getting out of bed to go to the bathroom provides its own unique challenges!
I frequently find myself thinking as I take yet another necessary sit-down, ‘I’m no Jane Tomlinson am I?’ Why should I feel guilty that I am not physically heroic; why should I feel guilty when not feeling entirely positive? However, I answer myself that these are the constructs of fear. Those who treat us fear failure; those around us who love or like us, fear our deaths; those who are well fear cancer and fear the realities it brings. What do we as humans often do when we fear something? We create a package we can cope with, which alarms us less and allows us space and time to focus on doing practical and achievable things to alleviate the everyday problems. We create something we can handle whether this is pink and pretty or valiant and ‘positive’.
I’m not saying it’s a good response but it’s a human response and understandable. What worries me though is that in this reduction we diminish the really, awful insidious nature of this disease and present it as something women get which is in some way feminine and thus of lesser power to destroy life and lives. Striking the balance between truly informing society about the nature of breast cancer and not terrifying my 26 year old daughter out of her wits is a tricky one I think you’ll agree. I certainly respect her intelligence and common-sense, but I also love her beyond words and wish her a life not overshadowed with fear of what may be to come. Does anyone have the answers here?
I feel this is an important thread perhaps for the next stage of BC support structures and information providers as well as medics. They certainly need to understand that some of us would like more ‘telling it like it is’ and less shying away but it’s ‘horses for courses’ and not everyone can tolerate or understand the full information. I for one would hate to be on a medical team dealing with cancer of any sort - it’s never good is it?
For now I shall try to tread the middle line - sponsor those who are comforted by running. strutting their stuff on a catwalk, walking at midnight, baking cakes or anything else that helps THEM to cope with their essential fear; researching and trying to be an aware and thoughtful/knowledgable patient to help me cope with mine; persisting in letting my friends and colleagues appreciate the realities of what this all means and not dressing it up or putting on a brave show, but without upsetting them or making them desperately uncomfortable. Meanwhile if October was to highlight secondaries I feel this would be a useful step.
I don’t think people are ignorant about the devastation breast cancer can cause. Since my dx I have openly spoke to women and men about my dx, surgery and prognosis to try and promote breast cancer awareness. I am a police officer working with a shift of 8 men. Yes there were jokes about my new boobs (all complimentary) - however I was surprised at how many of them had been affected by breast cancer - mothers, grandmothers, sisters etc and how they coped in dealing not just with dx, but the treatment programmes, secondaries and in two cases death. One young lad actually did a lot of fund raising for his girlfriend who was undertaking a run for breast cancer (yes dare I say she wore pink). I personally don’t think this disease is trivialised or viewed as chic in any way. I just think that it affects so many people that it gets promoted in a more commercialised way. My young nephew is currently undergoing treatment for a neuroblastoma and that disease gets very little funding and awareness. His parents would love it if a pink crusade were to start to promote awareness of his disease. As I said in a previous thread my mum died 20 years (1989 when mortality from breast cancer was at its highest) - at that time breast cancer was treated as a hush hush disease where people spoke in whispers behind your back and even my mum refused to acknowledge the disease for fear of people avoiding her. We can’t it have both ways - if we want to raise awareness then some form of commericialisation is necessary.
Hi there, I have two daughters in their 20’s. They are both teachers and highly intelligent. My husband (their dad), died four years ago of cancer, so they were well aware of the implications of the disease, long before my diagnosis came along to further worry them stupid.
He too, always had a lively, hopeful attitude to everything, just our personalities I guess. All people are different in their ways of coping. I have always been of the opinion that whatever will be will be, and have no intention of lying down and waiting for The Grim Reaper. Let others feel free to read all the statistics and research available - it won’t help in the grand scheme of things - and it’s not for me and certainly won’t make me live longer or be any happier.
Just because people choose to enjoy life - whichever hand we are dealt - doesn’t mean that they are ignorant of the facts of this disease. It’s not being brave, we have no choice other than to ‘get on with it’. Sitting dwelling on it is just so depressing. I am not scared or trying to hide from whatever my fate might be, it’s just that I feel there is no point in the waste of time it involves.
That’s my opinion, and I respect others who have a totally different outlook.
Best wishes, xxJacqxx.
Hi everyone
have just caught up with the weekend’s additions as I was away for a couple of days. Clearly there are a range of opinions and we should celebrate that and air them all fearlessly - the thread has obviously given a lot of us lots to think about - it certainly has me. I guess that the pink palaver has contributed to support networks such as this, and I believe that support has an important role to play especially in an illness that affects so many women, who I think do appreciate being able to support one another. If that’s social conditioning, well, it doesn’t stop it from being valid.
I guess lots of us have taken part in fundraising activities, support networks etc and I can’t see why anyone would want that to stop, however, thats a different thing to dumbing down the issue and not reflecting the realities of our situation.
I can’t get away from the fact that bc sells magazines and I don’t like it, but some of the comments have made me stop and think about whether I’m too judgmental. All I would say is that anger is positive too, and ranting is helpful, and lots of us have no other outlet or choose to have no other outlet because our diagnosis has such meaning for our daughters that we don’t want to make things worse.
Hey ho, not ranting today
love to all
monica xxx (still think we should have a revolution!!)
Hi Belinda
Good for you! I am sick of it as well we are all living with a death sentence hanging over our head, one way or another. I have triple negative breast cancer and have now been on chemo continually for a year and a half. I will be on it forever and am sick of hospitals, tablets etc. I do feel we need to keep each other informed as well as possible, if we don’t pass on information regarding this disease then we’re stuffed.
In saying that I have had some really good, sound advise here but have to say i preferred the old site. I do like to have a bit of hope though - it’s the way I can cope, even if I really know deep down the reality we can but hope eh
Diane
xx
Hi diane…yes me too, I’ve been on continuous chemo for around the same time…and on chemo for life now. Chemo is working well so feel lucky in that respect but still have the death sentence. I try and keep some ‘normal’ in my life but chemo and hospitals appointments play such a large part I think I’ve forgotten what real normal is. Take Care…x
Hi teacherjy…I have a daughter of similar age and we have had genetic appointments together due to our family history. I try to encourage being vigilant but also try not to let this disease cast such a shadow over family life…it’s so, so difficult…Take Care…x
Hi all, Bet I came over all ‘teacherly’ in my previous post - it’s well nigh impossible to get that lecturing note out of what I say! I’m all up for hope though - it’s what keeps me going. Whilst my rational brain portion absorbs and sifts the knowledge/stats etc there’s a stubborn area of brain that just refuses to contemplate a poor outcome in the near future. I intend to be around for quite a lot longer - I haven’t finished annoying the hell out of people yet!Sounds a bit pious to say a day spent in regret etc is a day wasted but I do feel that each one has to be used as positively as I can or why hanker after more of them? Having said that it ain’t always easy to make the most of them - it’s blowing a gale today and the rain is falling so that’s not a great start… Anyway power to you all to do what fits the bill for you; in a way we’re all in this together and whatever ‘rocks your boat’ is fine by me. As it is , it’s head down into the wind and plough on for me - I’m not very good at any other way. If that proves in the end to be a bit blinkered then so be it.
Hi Belinda - thanks for that. My daughter is coping well seemingly and accompanied me to chemo last time which was fun for me and a revelation for her,I think, as our unit’s so companionable and relaxed (great team there). I’m part of a research project which will alert us if there’s a genetic element to my DX so we’re keeping an eye on that ball…and so it continues - as you so rightly say it’s v. difficult to be informative without being alarmist. Unfortunately we are the beneficiaries of being subject to a ‘fashionable’ disease. There are considerable pros to this but also many cons as this thread makes clear.Who’s to say who has the right of it? It’s a quandary - Take care.
Interesting article I found via bcmets about the ‘positive’ word in a cancer context.
Jenny
It’s as if we’ve never commented . . .
M x
Even though it shouldn’t be a surprise it still is…what crass nonsense.
Jane
ick…
I saw it when I logged on and thought “pretend you can’t see it, they mean well, they don’t know what they’re doing, they don’t have a clue, they don’t mean to offend” but I’m offended and exasperated and it makes me wonder if we’re not heard or just ignored or in some kind of non-conformist minority that doesn’t matter.
Oh gawd, would that we could somehow slip directly from 30th September to 1st November and avoid bl**dy October!
Hi Ladies dont think we should forget what ,pink ladies ,feather boas is all about ,raising money for breast cancer !! i was first diagnosed 16yrs ago with bc ,and believe me money is certainly getting spent ,in hospitals ,chemo units ,research.Having been diagnosed with secondaries 3 weeks ago,im noticing a bit improvement in all areas ,so i say keep the moon walks , feather boas and whatever else gets money in the tins going !!freda x
Unbelievable.
I just did a quick look at ‘pints for prostate’ ‘child cancer awareness month’ and ‘ovarian cancer action’ to cite just a few other charities and nowhere can I see the sort of pink party atmosphere advocated here. e.g. "The mission of Pints for Prostates is to reach men in a friendly and non-threatening way when they may be willing to listen to a message about prostate health screening and PSA testing,” At least there is talk of education and a serious message. I would not mind the pink stuff (well, I probably would) if it actually conveyed a serious health message along with some breast cancer myth busting. But just to have a pink party and chuck your spare change in a tin does nothing to change the perception of breast cancer or to educate.
God it’s depressing.
Jenny
Hi. I hesitate to come in here as I don’t have BC, but will because I am affected by it as my fantastic (not because of BC) wife Janet has it (though I pray not secondary), and I honestly would take her place in an instant.
I can understand the dim view of the fluffy pink image as it may seem to trivialise and patronise, but I think there is another side to it.
Long before Janet’s diagnosis, I was very much aware of breast cancer, even though I had never been affected in any way by it. As far back as 1984, I ran a marathon raising money for a breast scanner at our local hospital because it seemed important - it never occurred to me that 25 years later I would myself be looking on with horror, shock and terror at a mammogram image on a computer screen in the hospital. I am sure the reason I have been so aware of it has been because it has been very strongly “branded” for a long time. That pink ribbon is an incredibly effective marketing device, and I am sure the whole brand image has increased not only awareness but also funding. I have to say that, now my dear wife has this awful thing that I thought only happened to “other people”, I am so glad that the funding and awareness have been there to help in so many ways. I don’t know what we would have done without the resources that are here on this site, for example.
There is mention of the “Pints for Prostate” thing in earlier posts, and I think it is worth looking at this article for a comparison: parity-uk.org/mens_health2.php. I don’t want to raise the “male vs female” issue because that is stupid, but it is worth noting how poor (or non-existent) the “brand image” is for the fight against prostate cancer and how that has fallen so far behind. I am a man, but I was never anywhere near as aware of PC as I was of BC even before it affected us. So I tend to think of the fluffy pink brand image as a good thing on balance because it seems to have worked, and still be working!
Regarding the knowledge/positivity thing that came up earlier, I was thinking a lot about that during the most dark times after Janet’s Dx and wrote an article in my blog about it (called “Forbidden Fruit”). Later, it was good to read the article referenced above by Jennywren, which has been mentioned in another thread - that is such a good and helpful series of essays.
xx
well said “iansman” totally agree with you ,ive met some remarkable ladies and mostly on the fundraising nights ,modelling ,race for life etc ,everyone has a different view and ways of dealing with this ,no one is right or wrong just different ,but feather boas do have a place in allthis ,hope your wife is doing ok take care freda x
I’m another that doesn’t mind the “pinkness” of October,like Jansman said it is a very powerfull and recognised brand and was something I always gave to pre diagnosis because I was aware of what it represented,ie went towards helping women with breastcancer. People raise money for charities in lots of weird and wonderful ways. What about the Calendar Girls, to date I think they have raised over a million pounds for Leukemia research and that’s with taking their kit off ! I’m happy that breastcancer has such a high profile month because every penny that is raised by whatever means hopefully will mean we are inching closer to finding a cure for this terrible disease.
Sandra x
We will all feel differently about this…I personally don’t see the need for pink hats and boas…but BCC are going further, (those estatically happy pics) it states the fund raising kit has stickers, balloons and games in it.
I would give to any good cause…do people really only give or give more at ‘fun party’ events? When I returned to work, in further education, a dept were having an event in the common room for a colleague just diagnosed with bc. There were balloons, pink banners and cakes…and one of those tumbleweed moments when I popped in for a coffee…deathly silence descended with no-one giving me any eye contact, embarrassment (mine too) all round…I think I was the sad case being stage 4 and just off crutches due to my spontaneous hip fracture. These were ‘good’ people raising money for a good cause but they couldn’t acknowledge me, a bona fide cancer patient.
Just a few months ago the local pub, just round the corner from me, were raising money for BCC. As I parked the car a well meaning young student in a tutu rattled a bucket and asked me for money…I really didn’t have any money on me but ended up apologising profusly as she was very persistent…and doing something I would never normally do, disclose I have breast cancer to a complete stranger. I was told they were doing the event for me, (not me personally!) but all breast cancer ‘victims’…perhaps I should have cut out the middleman and just taken the bucket of cash home.
In saying this I wish anyone well if they are fund raising this month I just despair of the methods sometimes used. All the razamataz. Not that I’m suggesting everyone wears black and only highlights those of us with mets. I just wish it was a more thoughtful campaign…cancer, living with cancer and the uncertainty it brings is often lost among all the pinkness.
A very good post, Belinda.
When I worked for the Wildlife Trust as a fundraiser, I really don’t think I could have raised nearly as much money if I had knocked on people’s doors dancing around dressed as an otter or a badger. But taking the time to explain the charity’s aims and goals would often result in an individual donating regularly whilst learning something important about environmental issues.
I don’t think any of us object to fund raising per se - that would be biting off our noses to spite our faces - but why, in this day and age of equality and enlightenment does breast cancer have to be portrayed in such frivolous terms? I watched people raising money for Macmillan Cancer Support canoeing down the Norfolk Broads last week. There were no silly costumes, no wigs, no balloons, just Macmillan green t-shirts and a polite request for donations.
I wish that those who are fund raising know what they are fund raising for. How many times do we read on these boards that people have no idea what secondary cancer is? Secondaries are what kill, not breast cancer. There is absolutely nothing pink and fluffy about living with the fear of death on a daily basis, and come October each year, it just feels as though I am having my nose rubbed in the fact that this will be my lot in life, premature death from secondary breast cancer in my liver.