Hi all,
Have just posted a long comment on the other thread and can’t repeat it all here!
Just remember we’re all in this together even if our views differ!
Best wishes to all, Julie xx
exactly x
Horace, I haven’t advocated a gallery of hope, to remind people they are going to die, and I’m afraid when you say things like we don’t need a gallery that acknowledges death, because everyone knows about that, I’m afraid I do find that dismissive and disrespectful. I also find it selfish when others say, that all that matters is that newly diagnosed people should get a positive message, and that if stage 4 peeps don’t like it they don’t have to look (how inclusive - I don’t think).
What is the problem with having a category within the gallery for stage 4 peeps who are moving on (or coming to terms with what JulieD calls a new normal), or is that idea beyond BCC’s comprehension ?. Don’t forget that many peeps who are diagnosed with stage 4 from the outset. Don’t they deserve messages of hope?. To get that hope they need to read about peeps who have had a similar diagnosis and moved on (and yes that will raise issues of death/fear), because actually, when you have stage 4 your life does become oxymoronic, because you are living while dying.
Just to clarify, as one of the people who said women can opt to look at it or not, I wasn’t referring to stage 4 women, I was referring to anyone with a BC diagnosis.
I do agree, as I said before, that there should definitely be a section on people who are stage 4 showing how women are still leading fulfilling lives, in a ‘new normal’ way. Elinda x
Dear Lemongrove
I think that you and I are so far apart on this matter that further discussion would be fruitless.You say you find my attitude dismissive and disrespectful-I have said all I want to about that,I have no time for anyone who feels that anyone with bc is dismissive and disrespectful of those with Stage4 bc.
To have a Section for Stage4 is absoluely fine-where did I say it wasnt?My objection is rather to your implication that to have a gallery of people who are not stage 4 is somehow exclusive.If you dont want to look at chit chat and fun you dont look at it-you are not excluded from looking at it-you just dont choose to.This pointless isnt it?I hated the title of your other thread and found it simply rude-I dont want this to descend into an argument between us-I have a huge admiration for the campaign you organised for cyber knife access.But this…
Val
Message below from the Moving Forward team:
Thanks to everyone for your comments. We appreciate your feedback and we’re making various changes in response.
The gallery is part of a wider campaign to raise awareness of the issues that people with primary breast cancer experience as they move forward after treatment. It complements our new Moving Forward resource pack and our regional services for people living with and beyond breast cancer. We’ve developed these in response to feedback from users, to address the challenges and issues faced by people who have completed their initial hospital-based treatment for primary breast cancer.
The gallery is part of the online element of our Moving Forward campaign, giving people a chance to share their experiences of life after treatment, provide mutual support, and help highlight the issues. Along with photos and stories, the gallery also includes statistics and quotes from our poll of over 400 users about their experience of living with and beyond breast cancer.
We’re also working on our support for people with secondary breast cancer. In a couple of weeks we’ll relaunch our Secondary Breast Cancer Awareness Day website. People will be able to contribute to the website, by adding their own experiences (including the use of video clips). We’ll post more information about this in a couple of weeks.
Thanks again for your feedback.
Mike, thanks for the additional clarification, that’s very helpful. And thank you again for your hard work, it is much appreciated.
Thanks Mike for your note. Thanks to the BCC team for their hard work.
You do raise a good point there Lemongrove some ppl are diagnosed stage 4 from the start & a section there with people & how they are living a new norm eould be a great idea.
Thank you Mike & for all the work & support BCC do for us here
Mekala x
Thank you Mike-the gallery will be a useful addition to BCC’s support system and adding a stage4 section could indeed be valuable.
Val
Me too JulieD posted on the now closed thread… nothing about BC is good…EVER… I don’t ever feel I will be free of it… I will always as someone else said sit with it on my shoulder… I will wake up every day wondering is this the day it all goes wrong…AGAIN …I have lived with this fear, which was realised, ( Iam now dx agin & having chemo…again)for over 14 years… but I did move on…I married…I had kids… and I truley hope I see them grow up, and yet should this disease rob me of my life in the end I have left behind 2 of the most precious things in the world my children, and hopefully I can teach them in the meantime to deal with whatever life throws at them with dignity and respect… especially of their fellow humans xxx J
im not sure if i should post this thread as i dont wish to cause any offence … i have had breast cancer myself last year in fact and i know i am so fortunate that my diagnosis was not stage 4 … it is so sad and cruel that any of us get breast cancer, what ever the stages , i can only speak for myself , when i was diagnosed ( a total shock ) picked up on a routine mammogram i was devistated… YES my first thoughts were very dark bleak morbid thoughts … yES i wondered if this was going to be the start of the end for me… YES i was totally ignorant… i assumed you got diagnosed got treatment and then died from this cruel disease. i did not realise that there were many forms of the disease, many forms of treatments and many different outcomes… im not stupid… i hold a responsible job… in the NHS… but i was ignorant to the facts … both good news facts and bad news facts … no one close to me had ever breast cancer. it was all new to me … when i accepted the initial diagnosis and started to look for answers i found this site, and it was so helpfull i could look up all my questions and ask anything i needed to know . we have no doupt all sat up alone in the middle of the night when we are so stressed out by where we find ourselves crying and praying for answers… we are all a little ignorant untill it happens to you…it would be fantastic if everyone could be cured and we could all move forward, and live happily ever after… sadley this is not always the case … i understand that some people do not have the moving forward option and this is so sad… myself i am stuck… no i dont have cancer anymore …but even though i have just had a good 12 month post cancer check… i cant move forward …i feel i am always going to be stuck in the …ive had it… it was invasive… is it ever going to return stage … breast cancer wiped the floor with me , took away my life as i knew it , changed everything about me … i wish i could move on…
I think it’s all about finding the “new normal”. From the instant the doctor said “I’m sorry to tell you…” our old versions of normal were completely blown away, never to be restored. But that doesn’t mean we have to stop living, the thing we need to do is discover what our new normal is. For each of us it’ll be different. Some will find that ongoing treatment for mets is part of their normal, others will find that dealing with lymphodema is part of theirs, others will find that their approach to life changes drastically and they do things they’d been only thinking of doing before BC. Whatever it is, it’s not ever going to be “getting back” to normal, but finding a way to be comfortable in our own skins and live our lives to the fullest is the best we can do. Yes, it might come back. Yes, it might kill us. But in the meantime there’s a life there to be lived. And I intend to live mine as fully as I can. (Once I’m able to get up off the sofa…)
i am trying so hard to move on , i have returned to work, and i have so much to look forward to this year , my son is getting married in 3 weeks … i just feel life has given me a real bashing … i was always so strong and bloody minded … now i feel weak and fearfull … but i hope i can find the strength to live my new life to the best of my ability, i really do hope i can thank you for your kind words AGAIN xxx and i will willingley give you a hand up of the sofa when your ready xx
Angie
Don’t be so hard on yourself, it really has not been that long for you. I read somewhere that it takes at least as long to recover as it took to go through treatment and I think a year is really early days! I am almost 3 yrs and although I’m at work etc and everyone thinks I am doing great I’m not. emotionally the recovery can take much longer than we think. I almost think that if you were strong and self reliant it is a disadvantage, for a start as you have no/little control over treatment and you also fewer “soft” skills in getting and asking for help. And everyone expects you to shrug it off!
Good luck to all. Don’t compare yourself and don’t let anyone else do it either. Everyone is doing the best they can in totally crap circumstances. No diagnosis is good news and to some extent we all live with BC even if it is not a secondary diagnosis. I think Lemon has a really good point in not denying the grim reality and like the others say it’s about getting by as best you can.
Love
Jane x
This comment is not specifically about the gallery, but the topic behind it.
Some of the comments on here about the inability to move on once primary dx and treatment have been completed, particularly when it appears to have ‘worked’ and there is NED - just follow up mammos, etc, has highlighted to me that a more holistic approach to treatment is needed.
It appears to be another postcode lottery as to whether it is recognised that BC messes with your head as well as your body and whether on-going counselling is offered - not just about dealing with an altered body image, etc, but also help dealing with anxiety so that the risk of recurrence/new primaries doesn’t become the ever-present ‘monkey on your shoulder’.
Don’t get me wrong - I’m not for a minute suggesting that there isn’t a reason to be anxious, or that it’s in any way ‘weak’ or ‘unreasonable’ to be anxious - just that surely there should be help out there to ensure that the anxiety doesn’t take over and dominate our lives.
I’m still mid-treatment (mx, chemo - 5th one 2moro, rads & Tamoxifen) and so don’t know yet how I am going to react once rads have finished. What I hope is that I recognise the risk and anxiety of BC coming back, but that I’m able to mentally put those feelings in a box for most of the time and put it at the furthest dusty reaches of my mind - to be taken out, opened and examined when I choose to do so. Obviously that is easier said than done, particularly if you know that your risk of recurrence is high.
Maybe I’m odd, but I’ve decided to see if I can think of living my life as a risk sport! I drive almost daily on a dangerous stretch of road, I ride feisty and lively horses, I’ve been known to jump out of planes and abseil down high rise buildings. I intend to carry on eating the things I enjoy and drinking alcohol. Some of the ‘risks’ I take I have a choice in, others I don’t. I take certain precautions to minimise risks, but not every single one (some I can’t afford, some take the fun away!)
There are many things that could injure/maim/kill me at some point in the future - despite my dx and current treatment BC is still just one of them.
Time will tell if I’m able to do this. I hope so - to live in fear is horrible. To anyone living with anxiety to such an extent that it disrupts or stops you from enjoying your life, I would urge to to seek some help to see if you can start to ‘put it in a box’.
Apologies for the ramble - the damned steroids are kicking in again!
Hugs to anyone who needs them - and, for the hell of it, to anyone who doesn’t.
Dx
I’ve just viewed the gallery site and read a number of people’s words about their BC ‘journey’. It may offer hope but it’s completely unbalanced!!! I can’t believe how positive it all sounds! It’s as if BC is being advertised as a new acceptance for life.
This may be because their words have been ‘shaped’ to fit the positive view of moving on by BCC but no one really mentioned the hard realities of losing one’s sexual appeal, long term fatigue, lymphodaema, difficulties with sexual pleasure, pain of looking into a mirror undressed, the aloneness of the journey, the hypochondria that takes over and I could go on and on…
I have read the subsequent discussion offered by others and do think that giving ‘hope’ to first time primary women will probably be achieved by the gallery but at the expense of true stories of women who have suffered longer and deeper… Women with higher grade BC and/or secondaries will probably feel excluded and I can understand their point of view.
My BC journey has been simpler than so many (and utter HELL all the same!) but I recognise the many many pitfalls that others have to bear. Their stories should be heard to give balance and to honour those who ‘move on’ to greater suffering later or even straight away at the start.
I know about the balance because of family members who did not ‘move on’ to a richer life after BC. They may have liked to but their stories are just as necessary. Knowing the real reality of BC makes you very grateful when you do take a step outside BC treatment and recognise you are one of the lucky ones!!!
Such honesty will not fill people full of fear forever… it makes you glad you’re alive when treatment has been successfully achieved.
Fear is part of living and definitely part of living with BC (and some of us don’t live with hope despite this diagnosis.)
It should not be an argument between hope and fear, that is far too black and white!
We are all on that spectrum between hope and fear and BC makes us move up and down the spectrum on an almost daily basis…
Greater balance and less of the ‘glitz’ is needed.
Please don’t colour the reality of BC to prove it is a curable condition. It isn’t always as we all do know!!!
Really liked Val’s piece about the comparison of BC with the war bombings. A really truthful observation.
My views only.
Very well said, Welsh girl.
Totally agree with welsh girl
Me too. I really like the gallery and have found the stories inspiring and hope-giving. I did think about putting my own pic and story on there, but am hesitating because this is the reality for me: some days I’m feeling full of hope and determination to get on with life and achieve my goals, some days, like today, mentally I’m ok but physically weak and tired, and some days I spend mostly crying and wondering if the NHS has spent its money well in trying to keep me alive.
I’d be surprised if I was alone in being like this a year post dx.
Lilac x