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Bernie Nolan diagnosed with secondary cancer

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CS1973
Member

Re: Bernie Nolan diagnosed with secondary cancer

 
Amanda10
Member

Re: Bernie Nolan diagnosed with secondary cancer

 
Jo_BCC
Member

Re: Bernie Nolan diagnosed with secondary cancer

Hi all

We have taken the decision to close this thread. The conversation has gone off topic and despite reminders from moderators to focus on the topic, it has progressed into a different discussion. Many people have voiced their views on this discussion and it now seems the conversation is repeating itself so we have closed this thread to avoid further disputes. Thank you to all who contributed to the discussion.

Kind regards,

Jo, Facilitator

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

With regard to the term palliative care. I think the distinction between palliative and curative treatment is rather blurred, and all boils down to intent. In other words, someone with secondry BC may receive exactly the same treatment as someone with primary cancer (for example many doctors perform MX on those with secondary BC, because they think it prolongs survival), and many secondary patients receive the same chemo and rads, as those with a primary diagnosis. The difference is that in those with a primary diagnosis, doctors hope it will save the patients life, and in those with secondaries they hope it will prelong survival. I do agree that the term palliative gets muddled with end of life treatment, which is really about providing a peaceful exit.

mrsblue
Member

Re: Bernie Nolan diagnosed with secondary cancer

[deleted]
Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

Mrs Blue, I think you highlight the complexity of this disease, and that sort of picks up on why I started this thread in the first place.
From my perspective it is wrong for celebs to talk about cures, beating cancer etc (or at the other extreme regarding a secondary diagnosis as an instant death sentence). The reason I think that is because (a) i believe that if we are ever to get a cure it is important to raise awareness amongst the general public, so that they pressure the powers that be to invest in research, and (b) because burying one's head in the sand and hoping all will be well is not the best approach. Rather, the more patients know about BC, the more likely they are to be assertive about their treatment (and treatment after all is their best chance at survival).

I'm quite sad that this thread has gone off track somewhat, and that two people have asked for it to be closed due to acrimony, because I do think it could help some (such as Dib), tofind strength from the posts. I regret to say I did rather respond badly to a provocative comment by one person, but in my defence there have been a couple of people making repeated postings which have been very provocative, and insensitive towards those with secondaries. Needless to say I will not rise to the bait again.

mrsblue
Member

Re: Bernie Nolan diagnosed with secondary cancer

Belinda - I do hope it won't offend you or anyone else reading this, if I try to clarify something... thinking of anyone who has maybe recently been dx with secondaries.
"a secondary diagnosis puts you in an entirely different place and your treatment is deemed palliative care only"
The word "palliative" can be confusing - I know that I was confused when first dx!
Those of us with secondaries are almost always able to have some treatment that actively targets the cancer cells - often this is chemo, others include surgery, radiotherapy, hormonals, Cyberknife, RFA, Herceptin and similar targeted therapies. In a few cases this is so successful that there is no evidence of secondary disease, but I would say that this is still uncommon.
Myself I think of "palliative" as referring to the care/treatment that I hope to receive when there are no more active treatments available for my cancer, e.g. symptom relief, pain relief.
dib
Member

Re: Bernie Nolan diagnosed with secondary cancer

All I can say,as a primary,is that the fear I have Of a recurrence,though still strong,doesn't fill me as much fear as it used to and that is because of the ladies on here who are still living their lives some years on from their secondary diagnosis.I take a lot of comfort from these threads and I certainly don't underestimate the devastating consequences of secondary BC having nursed my mum through her final weeks of life.My best wishes go to all BC ladies whether primary or secondary.
Do.x

belinda
Member

Re: Bernie Nolan diagnosed with secondary cancer

But perhaps it's because we are not travelling a similar road this thread is having to close? I don't know how primary patients feel about being initially diagnosed and then having to make important treatment and any surgery decisions as I was diagnosed stage 4 from the very beginning. However much I would like to empathise I've not had the experience. I only know a secondary diagnosis puts you in an entirely different place and your treatment is deemed palliative care only. This thread, even in Latest Posts is clearly marked as being in the Living with Secondary Breast Cancer forum. Of course it's open for anyone, quite rightly, to comment here but perhaps it's shown how great the differences are between having a primary diagnosis and living with stage 4 breast cancer.
kayh317
Member

Re: Bernie Nolan diagnosed with secondary cancer

Lemongrove you are right to be sad that the thread will be closed but i do feel your comments have contributed to the closure.
I have followed this thread for sometime without posting but feel very strongly that the post you have just put on here is very unfair. Anyone that has/have had a diagnosis of breast cancer whether primary or secondary has a right to a view without being judged.
No-one has the right to judge others especially when we are all travelling a similar road whether it be primary or secondary

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

I find it very sad that the thread will be closed because a few people have posted offensive and aggressive posts. As far as I'm concerned the posts by those of us with secondary cancer have been very tolerant and courteous - so it's very unfair that a thread that was started in the secondaries section, and intended for people with secondary BC, has been hijacked and ultimately closed by those with primary BC, simply because their hostility. What makes me even sadder, is that these people seem to think it's OK to gloss over the experience and suffering of people with secondary cancer, just so they can continue to bury their heads in the sand and feel comfortable.

scottishlass
Member

Re: Bernie Nolan diagnosed with secondary cancer

Glad you agree Liz and saffronseed. I hope the thread will now be closed as it has served its purpose. But enough is enough.

Lucy_BCC
Member

Re: Bernie Nolan diagnosed with secondary cancer

Thanks for your post lizcat, I will pass it on for Leah/Mike tomorrow but we can 'consider' it closed for now if that's ok with everyone

Kind regards

Lucy

lizcat
Member

Re: Bernie Nolan diagnosed with secondary cancer

Moderators - do you think you could close this thread now? I think it would be appropriate. Thanks

saffronseed
Member

Re: Bernie Nolan diagnosed with secondary cancer

Val - agreed - its getting a bit tiresome and seem to have strayed off the original points but I suspect that someone else will the want the 'last word' and maybe then we can get closure lol... xx

scottishlass
Member

Re: Bernie Nolan diagnosed with secondary cancer

What started out as a decent thread has put me off somewhat as time goes on. I have read the posts but will not be posting on this subject again as the tone has put me off and I am sure I am not alone in this. I understand everyone's point but I do think that the subject should now be closed. But again that is just my opinion. Val

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

Saffronseed the point is I did not quote something that was incorrect or untrue. In your earlier post you accused me of attributing comments to Bernie Nolan which were untrue, and potentially defamatory. I provided evidence to support what I have posted, but you have not withdrawn your comments. However, I respect your right to express an opinion, and as I want us all to be on the sme side/do not want this thread to dissolve into acrimony, I will write this off as a communication error.

saffronseed
Member

Re: Bernie Nolan diagnosed with secondary cancer

  • Lemongrove, Just to clarify (repeating my earlier post). I was concerned that by specifically quoting something from Graham Norton show on the site that was incorrect could lead to consequences (given everything in the news at the moment) and stuff on here may be passed on in other forums/facebook etc. Everyone is entitled to their views and to share those views and I understand that we are all different and have different ways of handling/saying things. I am not particularly a Bernie fan and haven't trawled the internet to find things to prove myself right or wrong - I just wanted to alert people to a potential problem – Some may think I am being pedantic others may not but I acknowledge and respect everyones views on this.

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

Thank you Belinda.
It has become apparent to me that posters to this thread had divided into three clear groups. The first group are those with primary BC who feel comforted by talk of cures, all clear, beating cancer etc, and get very aggressive when forced to confront the reality that things are far more complex (and this small group post repeatedly). The second group are those with secondary BC, who actually know the score, and recognise that the language used by Bernie Nolan (and other celebs), is reductionist, and damaging. The third group are those with primary BC, who recognise that BC is a complex disease, and that hope is not enough. This group know that as far as BC is concerned ignorance is not bliss - rather the more a person knows the better their chance of survival.
Safronseed, I think you're comments are rather pedantic. While Bernie did not use the words all clear on the Graham Norton Show, she certainly used words that amounted to the same thing. Also, the press release that accompanied her appearance on the show said " Bernie Nolan, all clear of BC". Additionally, on the Nolans Official website, she did claim to have beaten cancer etc, etc, so she has clearly used those terms. That being the case I do think it is slightly offensive to compare what I and others have posted on this thread, to what happened on Twitter, concerning Lord McAlpine. On Twitter, posters wrongly accused Lord McAlpine of the most heinous crime, without any evidence whatsoever, and that is clearly not the case here.

funmum3
Member

Re: Bernie Nolan diagnosed with secondary cancer

I tread tentatively into this thread, as someone who first saw it in the "latest posts section" and so didn't instantly see it was in the secondary section. Obviously I see that now, and understand how Bernie's statements can cause and clearly are causing upset. Maybe having two sisters with breast cancer led her to look at in a different way, I don't know. But I understand that her words will have caused distress to people.
I'm still awaiting my appointment at breast clinic, so don't even know what I'm facing, if anything. But one thing I still remember was reading Roy Castles biography years ago. I remember Fiona Castle saying how much she hated the phrase "battling cancer", because for her it wasn't a battle. That would suggest something you could train and fight against.
Language is a powerful thing. The language around any illness will therefore cause emotions of some sort.
belinda
Member

Re: Bernie Nolan diagnosed with secondary cancer

Please leave this thread as it is. The only reason I still bother to pop into the forums after the latest new site shambles is because of interesting threads such as this one. This thread is clearly signposted as being in the secondaries section so anyone reading the thread should be in no doubt.
saffronseed
Member

Re: Bernie Nolan diagnosed with secondary cancer

Can i just clarify my earlier post as it may have been misunderstood. I was just concerned that by specifically quoting something from Graham Norton show on the site that was incorrect could lead to consequences (given everything in the news at the moment) and stuff on here may be passed on in other forums/facebook ect. Evedryone is entilted to their views and to share those views and I respect that we are all different and have different ways of handling/saying things. I am not particularly a Bernie fan and havens't trawled the internet to find things to prove myself right or wrong - I just wanted to alert people to a potential problem - I know we all want to make a difference that is why we use the forums to support people and make our points and we do need to make sure that Breast Cancer is represented in the right way in media and that people understand that its not a 'trivial' disease.

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

Sorry, this thread is not using Bernie Nolans name in vain. She made statements, and it is fair to refer to them. Also with regard to the suggestion that we need a separate thread? This issue effects everyone with BC, whether they have primary or secondary BC. What is that you think people might find distressing about saying that Bernie Nolan has provided misinformation and caused confusion about BC? No doubt those who prefer to bury their heads in the sand and want to read about cures etc, find it comforting, but it just isn't like that, and ultimately is very damaging to pretend it is.
By the way, although Bernie has now acknowledged her cancer is now incurable, she has not acknowledged that it was wrong to suggest she had beaten it. In fact she is still talking about beating cancer. In the 5th November issue of Hello magazine, she spoke of her determination to beat cancer with a revolutionary drug called T-DM1. The fact is this drug will not beat BC, and has been shown to extend life by only around six months (and in anycase it has not been authorised for use in Europe yet). won't this mislead and give false hope to some with stage 4 BC, and misinform the public?

jackster50
Member

Re: Bernie Nolan diagnosed with secondary cancer

I feel that we are somewhat using Bernie Nolan's name in vain. The title of the thread is provocative in that women, especailly young women first being diagnosed, will be reading the thread because they think its to do with Bernie Nolan only to find a debate that they may find distressing.
A new title which reflected the debate would be better as it would at least give women the choice of whether they wanted to join in or indeed read about the subject matter.
mrsblue
Member

Re: Bernie Nolan diagnosed with secondary cancer

Do we maybe need a separate thread about secondary breast cancer and how it is perceived by the public... or secondary bc affecting "celebrities" and how it is reported in the media... and keep this thread specific to Bernie Nolan?
If so, I wonder how many of you primary bc people would look at it? It would need to be in the Living with Breast Cancer section, I think, not in the Secondaries or "Have I got secondary" sections.
I'm thinking of starting such a thread but I'll leave it until after my onc visit this week... hoping that someone else takes it up if it's a helpful idea.
Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

Yes Dib, and when people like Bernie Nolan refer to cancer as just an interruption, it reduces it to the level of a tummy bug, or a cold - and what does that do to raise awareness?

dib
Member

Re: Bernie Nolan diagnosed with secondary cancer

Lemongrove,i hadnt seen this report from the Nolan website till now,if only cancer was just an interruption,if only.....................

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.

Lulu34
Member

Re: Bernie Nolan diagnosed with secondary cancer

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
Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

Safronseed, before you start accusing me/others of misrepresenting what Berie Nolan has said, I suggest you take a look at the following link http://www.nolansisters.com/bernie.htm
This is the official Nolans site, so presumably they authorise content.

Angelfalls
Member

Re: Bernie Nolan diagnosed with secondary cancer

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?

carrie35
Member

Re: Bernie Nolan diagnosed with secondary cancer

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

saffronseed
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.

VerityC
Member

Re: Bernie Nolan diagnosed with secondary cancer

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

saffronseed
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.


Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.

VerityC
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

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?

VerityC
Member

Re: Bernie Nolan diagnosed with secondary cancer

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

maltomlin
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.

maltomlin
Member

Re: Bernie Nolan diagnosed with secondary cancer

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.

pussy
Member

Re: Bernie Nolan diagnosed with secondary cancer

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

Downbutnotout
Member

Re: Bernie Nolan diagnosed with secondary cancer

Deleted
X

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

Golightly, very well said - you summed it up very well. Thanks for finding the strength to post.

dib
Member

Re: Bernie Nolan diagnosed with secondary cancer

brilliant post Quail,sums up my thoughts exactly.
Di.x

golightly
Member

Re: Bernie Nolan diagnosed with secondary cancer

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

Angelfalls
Member

Re: Bernie Nolan diagnosed with secondary cancer

(((((((Golightly)))))))

Quail
Member

Re: Bernie Nolan diagnosed with secondary cancer

Oh, Golightly, don't feel like you can't post here. Mostly because you are right, this should be the one safe place you can be you without worrying about someone not wanting to cope. But, as a side issue, please could you help those of us with primaries who WANT to learn from you, so all of the facts, all of them not just the "fun" "positive" "cheerful" ones, can be brought to the table. Most of us hear your pain, and we are trying to understand.
I know that this is a secondaries thread, and I STILL blame the forum for the fact that all the threads are mingled on the "latest posts" page, so when you see one that catches your eye (Bernie Nolan!) you click on it without realising where in the forum heirarchy you are. Quite obviously I should be saying "I" here, except that I think it's how several of us 'primary ladies' got sucked into this discussion, almost by accident, as it were, and have stayed, despite the fact that we've all got a bit heated from time to time, because we DO care, we DO want to understand, and, here I am speaking entirely for me--I want to take the arguments out of the pink and fluffy realm. I am, slowly but surely, learning to look the facts in the eye, and, as I think LemonGrove said (here, somewhere else?) learning to live in the here and now. I like your last sentence, Lemongrove, "confronting the reality, learning about cancer, and gaining the confidence to deal with it".
Golightly, my father used to say "Don't let the turkeys get you down", meaning don't get swacked by silly people who don't know what they are talking about. I know that is easier said than done, especially if you feel like cr*p. But keep posting, your voice makes a difference. xxx

Lemongrove
Member

Re: Bernie Nolan diagnosed with secondary cancer

Golightly, please don't stop posting. Angelfalls is absolutely right.
Just want to say one more thing, in answer to those who say it's OK for celebs and the media to use words like cured, beaten, etc, because it gives hope to those going through treatment. I would really like those people, just for a moment, to imagine ladies with secondary cancer laying on the sofa in a great deal of pain and discomfort, having just gone through the latest round of chemo/rads etc, knowing the treatment won't cure them, only prolong their lives. Do you think these cancer patients find clap-trap about cures and people beating cancer encouraging? The answer is no. They feel this trivilialises the reality of cancer, makes what they are going through invisible, and is just plain sick-making?
Hope does not come from pretending that everything is OK, when you know it isn't, but from confronting the reality, learning about cancer, and gaining confidence to deal with it.

Angelfalls
Member

Re: Bernie Nolan diagnosed with secondary cancer

Golightly, I really hope you won't stop posting - it's so important for those of us with secondaries to have our voices heard, especially on a secondaries forum (if not here, then where?!). We already have to hold back so much, to protect our loved ones for example, which is why so many of us rely on these forums - so that we can scream, cry, rant and express our fears without censure. This is your forum and you're entitled to express your opinion here, without criticism and without feeling like you're coming under attack.