(((((((Golightly)))))))
Thank you. I just wanted to support what lemongrove is saying and say that it’s like having a baby, you can’t imagine it or understand it until you have had one…rather like secondary dx…I didn’t understand what it would be like, I didn’t know what it was like to feel such agonising pain, such tiredness, such distress. Ive worked as a nurse for many years in a hospice and in the community, and I’ve held hands with many distressed people. I thought I could empathise with them, but I couldn’t totally. I can’t abide these things/words pink fluffy beating bc, conquering bc, battling bc, all clear, thinking positive, bla bla bla. I hope bernie Nolan does really well and copes well with all that she has to bear, as we all try to.
when you have your primary dx of course you need and have to think that the treatment has worked, as many, many of us have been, and will continue to be well. The media wants to focus on this of course, BUT we are forgotton and sort of living in another dimension, ignored because we are the bad news.
I read the thread and I felt angry at the tone of it, and I just posted in a sort of anger. Maybe these forums are good for me to read, and to know that there are ladies out there who have great ideas and things I can learn from. Maybe I can’t quite cope with thearguments and discussions because in my head I am very fragile and easy to upset. I’m treading water, I’m a busy mum with a bit a a bad hand of cards. I do think I should say what I think, can’t if you deal with the responses, and it upsets you, maybe not the best thing! Xxx
brilliant post Quail,sums up my thoughts exactly.
Di.x
Golightly, very well said - you summed it up very well. Thanks for finding the strength to post.
Deleted
X
well said all i agree with lemongrove though those coming through now with first dx do have a better chance than those of us who was first dx 15 years but as we all know BC is not like other cancers as there are more than 1 type of breast cancer and it depends on which card you were dealt i do find it infuriating when i hear cure i have lost a lot of friends to breast cancer some only going a couple of years
all we get is to much alcohol obesity as if it is all our own faults that we got it in the first place
well since i was rediagnosed and given 2 years i am still here 9 months later i go swimming walk 4 mile a day look after my new granddaughter (who gives me a reason to live ) and yes i am in pain by the end of the day but it as all been worth it i just wish people would understand that i can not be cured or any of us
but when on a good day i suppose it is hard to believe even for me
please do not stop posting as we all learn from each other and lemongrove as been a big help and is knowledgable
kay
I, too, am a primary girl. Agree with Lemongrove wholeheartedly.
BC is such a complicated disease and no-one can take a dx lightly. Whilst my surgeon did tell me (straight after surgery) that I was cancer free, my onc has always said that there are no guarantees with respect to a recurrence etc. But those of us who frequent these boards know that. We all live with the ‘sword’ hanging over us. I have friends who have succumbed to BC and it just makes me more determined to enjoy what I’ve got now.
I really feel for Bernie but also feel that the media like the ‘feel good’ stories. They’re not interested in the negative BC stories.
I’ve been on these boards for long enough to remember so many really lovely women taken by this disease, but am also heartened by the strides that have been taken in the treatment for stage 4. Although I appreciate the traumatic life some of you stage 4 ladies go through,and it’s still a long way to go though.
I, too, am a primary girl. Agree with Lemongrove wholeheartedly.
BC is such a complicated disease and no-one can take a dx lightly. Whilst my surgeon did tell me (straight after surgery) that I was cancer free, my onc has always said that there are no guarantees with respect to a recurrence etc. But those of us who frequent these boards know that. We all live with the ‘sword’ hanging over us. I have friends who have succumbed to BC and it just makes me more determined to enjoy what I’ve got now.
I really feel for Bernie but also feel that the media like the ‘feel good’ stories. They’re not interested in the negative BC stories.
I’ve been on these boards for long enough to remember so many really lovely women taken by this disease, but am also heartened by the strides that have been taken in the treatment for stage 4. Although I appreciate the traumatic life some of you stage 4 ladies go through,and it’s still a long way to go though.
Hear hear Maltomlin,
As to the media liking “feel good” stories, I think we all do to an extent. I can quite understand why Bernie has been, or is trying to be upbeat about her situation; for some it is much easier to cope that way, at least in public. I know that is my defence mechanism and I make no apology for it. If life is telling me that my days are probably fewer than I expected pre diagnosis I want to live them as positively as possible, and focussing on the positives, so the successes, the little triumphs and the hopeful outcomes, where I can is an essential part of that. There are certain people with whom I am brutally frank, but there are many others to whom I would never tell my deepest fears. Why should I? They have their own burdens to deal with, and I do not want them to see me and walk in the other direction! For all the advancements in medicine, most people still view cancer as very, very bad news and find it difficult enough to have that first, second, third (!) conversation when they have heard that you have cancer. Although that awkardness displayed by some has been very painful for me, I have understood it, and I have no wish to add to their unease.
I do agree though that there is confusion about breast cancer treatments and prognosis. There has been high profile fund raising and breakthroughs with treatments over recent years, more so than with some other types of cancer, BUT of course, there is still a significant way to go, particularly for triple negative of course. However, it is “cancer” and I think that most people who have had experience of a friend, relative, colleague with cancer know that we are at risk, to a greater or lesser extent. What I can say, coming from a family that in the last 30 years has been acutely affected by various cancers, is that I know I am relatively fortunate; if I had been diagnosed with pancreatic cancer, or oesophageal, or ovarian cancer or certain types of primary brain tumour I may well have been in a far worse situation by now.
Wishing you all well, and strength to manage, in whichever way works for you.
Verity x
Verity, I think having a coping mechanism is one thing, and going on the telly and radio to promote misinformation is another. If celebs decide to go public about their disease, then they have a responsibility to get it right. Talk of cures, beating the disease, all clear, or at the other extreme instant death sentence, are just plain wrong, and create either complacency or defeatism.
Neither should we as cancer patients sugar coat things for others. Yes people have their own problems, but if they ask why lie?
Morning Lemongrove.
I think you have misunderstood my post; I said nothing of lying. If asked I explain that I am NED and what that means in as straightforward a way as possible. What I do not feel the need or wish to do is expand on what the statistics say about my likely recurrence rate or prognosis. For three reasons: 1) I do not accept that the statistics necessarily indicate what the future holds for me, and 2) I do not wish to dwell on it any more than I need,for my own sanity(!) and 3) as I said, I do not wish to load my friendship/ acquaintance with the person concerned with that gravity/severity.
Many people though do not ask. They ask “How are you feeling?”, “How are you coping?”, “How are things?” They seem to know from past experience of the disease that “Are you better?” “Are you cured?” type questions are not the right ones to ask.
As for celebrities, I feel for them. It is probably unlikely that they decide to “go public”; publicity of their illness finds them I expect as a consequence of their fame. Their choices at what we all know to be a very harrowing and difficult time of their life must be very stark indeed. I think to place on them too much responsibility for getting the words absolutely right when they are probably having a harrowing internal struggle with their situation is a little harsh. They are people first.
It is a very sad fact that some people in the limelight who try to be upbeat about their diagnoses will not survive, despite all their and their medics’ efforts. It will be their untimely, and no doubt highly publicised deaths that will do more to educate the sectors of society that think breast cancer, or any other types of cancer, are always cured.
Verity.
Verity you said " There are certain people with whom I am brutally frank, but there are many others to whom I would never tell my deepest fears. Why should I? They have their own burdens to deal with, and I do not want them to see me and walk in the other direction! For all the advancements in medicine, most people still view cancer as very, very bad news and find it difficult enough to have that first, second, third (!) conversation when they have heard that you have cancer. Although that awkardness displayed by some has been very painful for me, I have understood it, and I have no wish to add to their unease". That suggests to me that while you are not lying (sorry I used the wrong word), you are withholding the facts.
As to celebs being forced to go public, I disagree completely. They have the option of remaining silent, and most have press officer/PR people anyway. Nobody forced Bernie Nolan to go onto the Graham Norton Radio Show and say she was completely free of cancer. If they do decide to go public, then they/and the media have a responsibility for what they say. It is very sad that she now has a secondary diagnosis, but hopefully, she will show that the disease is to complex to talk of cures, or at the other extreme instant death.
I feel that I must stick up for Bernie Nolan (again) not sure why, (but it is a thread about her) I know what press/newspapers are and how people can be misrepresented. I heard the Graham Norton inteview and did not remember her saying she was cured and actually have played it back to check. What she said in response to Graham Nortons question ‘are you fully better’? she responded ’ yes, I am not on drugs or anything but I go back to see my oncologist and surgeon every six months so far ‘touch wood ‘ everthing is great. which to me isn’t saying she is cured she doesn’t dwell on her illness at all as the interview is really about her role in Chicago.
It is good to see your post Saffronseed. I agree with you.
I do hope that neither she nor any of her family or friends have seen this thread but at least if she/they have your post will have, hopefully, redressed the balance!
V
i just think we all need to be really careful when reporting things we have heard/seen on the internet/press/papers - I would hate anyone on here to be sued (as Lord Macalpine tweeters may be) its so easy to get caught up in speculation and passing on something you believe to be true when its not.
Well done saffron seed for reminding everyone what this original post was all about. I can’t belive the heated discussion is still going on, it’s really not nice reading that people find other people’s view points offensive I wish everyone could respect others opinions and be supportive no matter if they disagree. We are stuck in this bloody awful forum (please excuse the French) because we all have CANCER and no matter how small or large that is its still just as distressing for each and every individual and this forum is to pull together not argue. Please everyone lets be supportive and nice to each other xxxxxxx
Carrie, I absolutely agree with you; it would be so nice if people posting on this thread, on a board for people with secondaries, could be supportive of those with secondaries who post their opinion on a subject which they feel affects the way they are perceived by the public. But unfortunately, some posters have instead made a number of those with secondaries feel like they are being attacked, just because they disagree with them. And you’re right; this forum is here for us to gain support and information from one another, and the secondaries boards are specifically for those with secondaries or other interested parties who can deal with the truths they will find there.
One thing I’m not clear on, though. What is it that you don’t like: is it the fact that some people have said they find certain posts offensive, or the fact that some of the posts have been offensive?
Safronseed, before you start accusing me/others of misrepresenting what Berie Nolan has said, I suggest you take a look at the following link nolansisters.com/bernie.htm
This is the official Nolans site, so presumably they authorise content.
Hi ladies…
just thought id post this link as it appears to be written in Bernies own words, rather than lemongroves link which i think sounds like somebode else has written it on Bernies behalf… some may agree or disagree with her sentiments but i guess its just how she is coping with it… not maybe in denial but perhaps a bit unrealisting in her expectations but that could be down to her docs by the sound of it.
http://www.nolansisters.com/bernienolan.htm
Lulu xxx
OK lets just scotch the suggestion that I/others have misrepresented Berie Nolan. This is what appears on the Nolan Sisters official website. " Bernie Nolan has won her battle with breast cancer. The feisty Nolans star was given the all clear following gruelling chemotherapy and a mastectomy". The page then provides a quote by Bernie which said, " It feels like cancer has been an interruption in my life. Now it’s gone, I’m back. I’m happy I’ve beaten it".
So I have not - to use Saffronseeds phrase - passed on information I believed to be true, which is not. Bernie Noln did make these statements, and I resent being compared to the lynch mob that defamed Lord McAlpine on Twitter.
Having said that I do not want this thread to dissolve into acrimony, because I think how celebs portray BC and whether this has a positive or negative effect is an important issue for us all.