Sad & Frustrated at this disease

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Hi
I’ve been away for a few days and promised that I was going to limit my visits to this web, down to once a month. But this is wonderful! This is who we are, this is how we live and here are some of the things we want. It has taken me ages to read through the posts.

Belinda and Anne in particular, there is so much wisdom, honesty and power in all thet you have both posted. And Jane and everyone else, now I think about it again!
Also, whoever said the pinstripe ribbon- I like it. We are not pink and fluffy, we mean business! Actually, I would be happy with pink-striped ribbon, a thin pink to represent BC but the rest to represent stage IV BC.
(One comment I have to make re the M+S breakthrough lingerie, don’t be too angry with the plunging neckline as some of us still have our flippin boobs but wish they had been taken off in time. My scars are all on my abdomen).

I agree with Jane that we need to know what we want. Yes, getting a named person to call helps but let’s face it, bless them, they can’t really answer many of our questions- how can they honestly?

I will email Breakthrough too, I cringed when I saw the bravery thing, and didn’t want to mention it, as it detracts from what Breakthrough are really about. I suspect, that is the idea of the Prima side of things- they probably want something out of their sponsorship or support, probably sells a few mags. We should all write to Prima probably.

One of the things that I am most horrified at is that Cancer Research UK are not including advanced cancer and palliative care within their core areas of research. That means that they are doing very little to help people like us. Thankfully, they still run some trails for treating advanced cancer but they are missing out a lot of things. It isn’t just BC- this is true for all cancers. Yet, many people who die from advanced cancer, having needed palliative care, or their relatives will leave substantial amounts of money to them.
It is easier for them to make themselves look good by focussing on areas such as prevention, genetics and screening. But that’s daft, there will always be cancer, no matter how much we screen, prevent and study genetics. That is the nature of the disease. Now, if they could say that more of their research projects resulted in findings that translate into therapies that halt cancer progression for good… Yes, maybe I’m asking for the moon but why not?

As I fast-walked the Race for Life last year (with my name and the names of six other friends and my late father on my back), I was sent the pack again this year and I was horrified that they had asked a lady who had been treated for BC to write the letter. The letter was written as if she would now be ok- don’t CRUK know what BC is like. Plus it made me feel quite bitter to have a primary BC ‘survivor’ being used to say how wonderful Cancer Research is- don’t they get the fact that BC can come back many, many years later?

Finally, I am also mightily unimpressed with the recently published NICE guidelines for advanced BC. How ineffective can they be? As usual they took the easy route and just kept up-to-date with the ‘usual presentations, main types of BC etc’. Maybe it’s just me, but I’m not sure what anyone gains from them…boring!

Like others have voiced on here, I don’t think any particular person on here should feel a responsibility to be an advocate- we all know the score and we know how precious our lives are. Personally, I value mine too much to fight for everyone else- I’m sorry. Maybe the best we can ask is that BCC act on behalf of us as ‘a team’ and forward details of this thread to all who could do with reading it!! What does everyone think? Why do we have to use our precious time to go knocking and campaigning? Isn’t that what charities like BCC are meant to help us with?

Thanks Poannie for starting this thread, this is what I joined BCC for.
Anne x

(PS Thanks to BCC for what you have done already and to members of the taskforce etc. I for one, hope you can also help us find ways of venting our frustrations productively so that we feel that our expressions can be turned into something meaningful.)

PS another edit, I made a comment about not buying Prima but I am sorry I made this because at the end of the day, they are supporting breast cancer research and I’m grateful. I just wish they would try and understand that it doesn’t and with whoops and whistles.

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Just a quick one - had an e mail back from Head of Legal risks or some such other thing - at Breaktrhough, acknowledging my complaint and telling me who it will be dealt with. Interested to see how they deal with this especially as there are a number of them!

Cathyx

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Me too. They are obviously concerned enough to formulate an official response. Good work!

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Yes this is great stuff. Don’t know if its me but the page about nomiantions seems to have disappeared off Breakthrough’s site. Has it?

I think it would be so good if the pressure we can exert leads to the withdrawal of this competition.

Over the last 5 and a half years since my primary diagnosis I have on and off been involved with several Breakthrough and BCC events…some of them good…but my overwhelming impression has always been of controlling, slightly paternalsitic and patronising organsiations which welcome cheery, positive, smiling surviors who will toe the party line but are none too keen on those a bit grumpier, more serious, more questioning. Rather like the right and wrong kind of leaves on the line the charities have a clear notion of the ‘right’ kind of ‘survivor’. Lipservice is given to campaigning…e.g Breakthrough’s very slick October lobbying of MPs, but its a very top down model of involvement…feedback which isn’t universally cheery is cyphoned off.

For those of us with advanced disase, immersed continually in treatments and the impact of the disease, it can be very hard to sustain involvement…so time passes and passes…and any possibility of campaigning with a radical edge is diluted.

Jane

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its gone! The link on Breakthrough is removed! Lets still see what they say it may be a temporary measure- but if it really is gone, then I am pleased with them for recognising thier mistake and withdrawing it rather than sending us some patronising letter.

Cathy.

PS this cheers me up alot

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Hate to rain on anyone’s parade but the closing date for applications was today May 11th (extended from May 4th) - so it may have been removed because of that.
I sincerely hope not. I have heard nothing from Prima yet.

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Dear All, although I’m not a secondary I have been following this thread and really want to get involved with you all. This affects all of us whether primaries or secondaries. We need a strong voice that reflects the grass roots of cancer, the realities of the disease and not the ‘IF YOU FIGHT IT YOU WILL SURVIVE IT’ brigade
Best wishes… and I am moved by and love the honesty, really that’s what it is all about… this is makes it real to all of us

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Count me in too. Brain not entirely working at the moment so apologies if this is far from well thought through! I have spent so much of today trying to explain to people what my liver progression means - some get it but so many do not. I blame the media a lot for that - those that don’t get it, just cannot equate what I am saying/doing etc with that media image of someone with bc. The ‘IF YOU FIGHT IT YOU WILL SURVIVE IT’ brigade (as you put it leadie) are often more vociferous than others and need to be challenged - but sometimes I just don’t have the energy. I so want someone to really listen to me/us, and then campaign on our behalf. Maybe that’s where some of the people with a primary dx but with similar thoughts/attitudes, could help??? Any thoughts leadie??

Sounds as if I have missed my chance to email Breakthrough/Prima but from what I’ve read on this thread I am appalled. Who can possibly enter in judgement on how “brave” different people who have bc are? It’s the idea of a vote I find so utterly repugnant. Hope those who have emailed, do get a proper response rather than a standard letter/email.

I loathe this disease but I loathe even more this idea that we should all be dealing with it in a certain way and that if we can’t or won’t fit that profile, we are frequently made to feel not worthy of the same consideration. I think a cure might still be a very long way off but how we as people with bc (primary or secondary) are treated/portrayed could and should be changed NOW.

Kay

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Kay I don’t think you have missed the boat - the whole wretched thing is ongoing - it’s just the deadline for submissions has now passed. You can still voice your disgust to Breakthrough/Prima. The more emails in inboxes the better.

The next step with this idiotic competition is to invite 5 nominees to London for a photo shoot later this month.
How many of those women will be women in their 80s or 90s? My bet is zero. Wrong demographic for the magazine, their advertisers and their sponsors.
Prima will publish stories of these 5 women in their August issue. Then the public will get to vote for the woman they think is most courageous. (Dear god this beggars belief doesn’t it?)
The winner will be announced in November - more blurb in the wretched magazine.
The award will be made during Prima’s - wait for it - High Street Fashion Awards.
Avon and Champneys as sponsors of this codswallop also deserve to be told a few home truths.

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MsMolly and Kay
Couldn’t have been said better. Sent emails to Prima and breakthrough.

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I wonder if Jade Goody’s willingness to court so much publicity seems to have made it acceptable for magazines to zoom in on cancer as another feature to fill on the editor’s list - beauty, fashion tips, relationship advice, pregnancy and, oh yes, the Cancer Corner - subdivided into awards for: best cancer haircut, cancer bravery points, looking gorgeous through chemo, fashion tips for those 2 stone heavier, lopsided, swollen ankles etc etc etc. They are setting us up against each other and it is hugely distasteful.

The saddest thing is that these people sit around in an editorial meeting brainstorming for their next issue and instead of conducting some investigative journalism into why it is acceptable for this government to allow so many women, we who comprise 51% of the population, women who give birth to and nurture the current and future generations who work hard to develop and sustain our economy, at a time when the birth rate is rapidly declining but we are living longer (present company excluded) and the best they can come up with is a pageant to “reward” women for being ill. Do me a favour!

There is something truly rotten in Pinkification. I’ve never heard of bravery awards for people with AIDS or HIV, multiple scelerosis, motor neurone or other progressive illnesses. Is it because we are women that they think they can patronise us with this crap, keep us sweet and manageable so that we don’t bombard their offices and hurl prostheses at them and strangle them with head scarves? What a load of bolleaux. We are less threatening and easier to deal with when we are “accepting” and “brave” and “positive”. In a fit of pique I was going to send Always a load of my used sanpro for having the nerve to wish me a “Happy Period, always” in their adverts whilst I was haemorraghing with the return of my periods (I was having a bad day), but now I am wondering what I should send these f***wits at Prima?.. Answers on a postcard, please.

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As a woman with advanced BC, I find the pink fluffy stuff very inconsiderate and distasteful (I did even before my diagnosis)- but this is where we cross over with primary BC.
I don’t know how the primary BC crowd feel about the pink stuff? Do some of them actually like celebrating the end of their treatment, 5 years on, etc and that of their friends or loved ones in this way? Should we deny them? I don’t know.

The most bizarre thing that happened to me was in October 2007. Biopsy and scan results showed that I had metastatic BC but they wanted me to have a mammogram to try and find the primary.
I was sat in the middle of all these women having their routine mammo screening with a few youngies there too looking really worried, there were receptionists sitting with pink fluffy ears on, loads of pink balloons and party pop music and I had been diagnosed a month earlier with metastatic BC in many places in my body. Now that really took the P!!
I think the pink stuff really does make it hard for others to see and treat advanced BC with the seriousness and respect it merits. And as others have said, the issuing of ‘bravery awards’ is in extremely bad taste. I didn’t think it would be possible for all of us to unite in this way. We have a collective voice and we should continue to use it, in honour of the women whose passing made Poannie start this thread.

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Hi Anne

I’ve thought a lot about the whole primary/secondary ‘divide’ and I think its an articfial one…(not least beacuse of my own unsual terminal recurrence which isn’t even technically called ‘secondaries’ )and divisive in building and maintaining a strong community of women. I’ve certainly been banging on about these issues for the five years I’ve been using the forums. I hated pink fluffy then and I hate it now…and sadly I have met women with secondaries who also do pink fluffy.

Jane

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I haven been following this thread for the last few days and have found it so honest and interesting. I have not posted because a lot of others, and namely,Anne, have been saying what I feel I would have said.
I have a friend, (well more than an acquaintance but less than a friend), who said to me that the best way to deal with the cancer was to stay positive, as though I could self-cure. And her sister-in-law died from breast cancer a couple of years ago so I would have expected better.
But there is pressure (inadvertent of course) to be bright and bubbly and positive. Never compaining. And this leads to people saying I am so brave. They usually tell my mother this (who often does the school run for me) who proudly passes it on. And she doesn’t understand that it annoys me! I know I am not brave. The other comment is How do you cope? well, there is only one alternative to coping and that is not coping. not a realistic possibility.
So, if I moan it is usually only on this site where I know I will find others who understand and there is no pressure to be “that mum at school with cancer who is so brave”!

Good work with Prima and Breakthrough. I think their intentions were good and they probably are very surprised by the reaction their competition has provoked in certain quarters. It will be interesting to see what response they give.
Ena

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I have read this thread from the beginning and wanted to contribute but had not quite got my head round what to write.

I don’t believe that leaving it up to BCC to pass on our thoughts will get us anywhere at all. The main problem is that until you have been diagnosed you have no idea what that feels like, and until you have a secondary diagnosis you have no idea how you will react. We are all individuals and should be treated as such, it is all too easy for the medical profession to look at statistics and to funnel us through the system without considering the individual nature of our disease and our circumstances.

My own view as to how we should be tackling this is that we should set up a small group, at least half of which should be women/men diagnosed with BC. We then need to clearly identify what is wanting in the current system from diagnosis for primary BC right through to death from secondaries. Stage two is how we fix it, the sad thing is that many of us are unlikely to see it fixed but whether we take an active role or a supporting role is up to each of us here, and enlisting the help of some of those with no secondary diagnosis will help continuity.

I would love to be involved in something like this, when do we get started!

Fiona

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That’s helpful, Fiona: count me in. There is also the need to de-pink October 2009 - now is the time to get planning - and probably to collect data on treatments and clinical trials.

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I agree with Fionam. A patient generated analysis is required for women with both primary and secondary BC. We need to identify what is wrong and then set about attempting to rectify it.

Not all women with primary dx are happy with the fluffy pink twaddle. I am not and never have been - even before diagnosis I thought it was all saccharine garbage designed to infantalise women. I have lost good friends to this disease. I am under no illusions as to its ruthlessness and randomness. I may or may not become a woman with secondaries. Either way my concern and support for the thousands of women whose lives are cut short by this disease - and my interest in the fragile concept of “survivorship” are solid.

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Good post Fiona. I like the idea of identifying what is found wanting from diagnosis of primary breast cancer to death from secondaries although I would slighten widen it to include from the moment of suspected breast cancer to death from secondaries.
I have kept various notes on most consultations, treatments etc I have had because, at times, the poor responses from the medical profession have been unbelievable.
I think the constant ‘waiting’ is what drags me down most. Waiting for consultations, surgery, scans, the follow up to scans and on and on. Sometimes I feel my whole life is spent waiting for something cancer related.
I realise this is more an issue with the NHS than with cancer research charities but it is all closely linked.
Ena

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Count me in too, would love to get involved
Leadie

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Still count me in. I have been busy all day with Ian’s birthday and just finished clearing up after his party. I am at the hospital in the morning. So I have not gone off the radar it is good to see this thread gathering so much support.
Love Debsxxx