Thank you BCC for sharing Holley Kitchen's video

[Marie123]

We do need you Tinks, from what I remember in Peter Pan we have to clap to save Tinkerbelle. I do respect your decision (but I am secretly clapping )
Marie xxxx

[kilimanjaro]

Ah, Tinkerbelle, I hope to see you writing again on this forum.

"Peter Pan" is one of my favourite books. I seem to remember that fairies can enable others to fly by sprinkling them with fairy dust.  I think this forum needs some of your fairy dust...............x

[rosie53]

Hi ladies, I have been reading this thread and really feel for you Tink,  please don't leave us you will missed so much by everyone.

I watched Holleys Kitchen video and was really moved by it but have not read any of the posts from the pbc thread as I tend to just post on the bone mets thread so have no idea what was said but I'm sure you meant no offence to anyone and was simply voicing your opinion!!!!

Hugs Janette xxxxxxx 

[Marirose]

I dont go onto the PBC threads perhaps better sticking with SBC seems to be the best place for me. Good Luck Tink in what ever you decide but I do think the Forum needs your imput xxx

[belinda]

Yes good advice, I usually read latest posts but you do get all the latest posts from everywhere and yes it can be very upsetting at times.
Agree Helen with your observations. Tinks you were honest and very gentle I thought. Truly. X

[Tinkerbelle]

Great advice ladies - taken on board.  x

[2catlady]

I agree with EJ,I very really go on PBC bits as I get fed up with some comments and would write something rude and get moderated !
Hugs,Helen xxxxx

[EJ81]

Tink, in the same way the primaries sometimes say 'don't look at the secondaries thread!' I tell myself not to look on the primaries threads as I find them upsetting sometimes.  I won't go into why as I don't want to lump them all together.

Please stay on the secondaries and maybe give the primary threads a miss for a bit?

You haven't offended anyone here, also I don't think you carry any blame for upsdet on the other thread. It wasn't you who introduced the topic of the video in the first place. I'm glad you're not staying away completely but please know you can still post xxx

[2catlady]

Tink,please reconsider xxxxx a bit too in your face is what we need.

Yes,I think your point was missed. Bc doesn't kill but SBC does and we do need more research into SBC.
l looked at the thread and thought out of the 10 people on here 3 of you will be joining us,which is quite shocking and very sad and I don't think people realise this.
Please don't stop posting Tink.
Hugs,Helen xxx

[Tinkerbelle]

Thank you ladies for your kind words.

I have briefly looked in over the last couple of days to see if things have quietened down and it looks like they have.  My reason for wishing to leave was promted by another lady who was leaving and as the one, I felt,  with the greater responsibility, I thought it should be me rather than her.

On reflection, the posts I commented on were neither meant for me nor meant to be read by me and so my responses were shocking to those on the receiving end and I imagine far from the support they were expecting.

What did my foray into the primary forum achieve?.  Absolutely nothing apart from upsetting some primary ladies and making them worried about posting their true thoughts in case the pit bull from the secondaries forum descended on them when they weren't looking.

I still feel that the main point of my comments was missed.  I believe that research into metastatic breast cancer is the way forward for better outcomes for all those with bc.  Those outcomes might not be in time for us, but hopefully they will be for those who come after and without awareness that will never happen.

I will always check the forums as I like to see how you are all doing and read your news, but I'm not sure it's the right place for me as I'm a bit 'too in your face' and not so good at the other stuff.

Love to all Tink x

[Anna_BCC]

Dear Everyone

The video by Holley Kitchen, explaining how it is for her living with secondary breast cancer, has generated a wide ranging discussion with people airing and sharing their individual views, which everyone is entitled to have. However, sadly many people have been hurt and upset by some posts and I urge and ask you all to be mindful when writing and posting. Before posting please read carefully what you have written and think about how someone else may read and interpret the words. Everyone should have the choice regarding the information they read or seek and I ask everyone to respect the views of any individual about their own choices. As I have said before, no one size fits all! I am not directing these comments to any particular individuals but asking you all, as part of a shared supportive community, to carefully consider how you are writing and also how you are reading posts. Things can be said unintentionally and also read in a way that was never intended. I don’t believe anyone wishes to deliberately hurt another.

This community has so much to offer each other whatever the stage of the breast cancer journey and you are all valuable members of the forum. I thank each of you for the support you provide each other and sincerely hope that you all continue to do so empathically and from the unique position of having breast cancer and therefore sharing an experience which no one else could understand unless they have been there.

With best wishes

Anna

Digital Community Officer

[JulieD]

First, as I've said in bone thread, Tinks, please do not leave us. I've known you since your primary days and the claredrops posts. You've always been a great support to women here and have a good way with words taliking a lot of sense, please don't let this 'upset' deprive you of us and us of you.

Anna, I tinks a private room would be a good idea, one of the reasons some of the FB groups are so popular is that the women feel safe to talk openly without fear of family/friends seeing what they say, I'm sure it would benefit the women here if we had  similar set-up. Not taking the place of the forum posts but as an addition for those who want some 'safe', private space. The group I set up on FB is a private (and secret group so can't be found by searching and only open by invitation) There is obviously a need as we now have 200+ members! Some came from and still use BCC (like me!). FB is limited so a good safe discussion space here on BCC would be great!

[KAM80]

Thanks so much Belinda, I really appreciate being made to feel welcome 🙂 x

[2catlady]

Oh,yes,the mods would have been on to it straight away if any wrong had been said. Take this from a serial naughty girl who has been moderated a few times !!😈😈

[belinda]

Hi Kate, I agree with you, completely, and if there had been anything amiss posted the Mods would have intervened.
I understand you are not a big poster here but do keep visiting. 🙂 x

[KAM80]

Tink, I truly hope you reconsider your decision to leave the forum. Your response, was in no way offensive or upsetting, you just explained how their posts had made others feel. I am not a big poster on the forum but read everyday and was so upset by the comments I felt I had to reply too.

They seem to now be painting it as though the big bad secondary girls have come in and upset their sheltered little world? I don't believe any of us wrote anything offensive, we just said how we felt.

I guess our world is just too frightening for them to even contemplate.

Hugs, Kate x

[LemonDrizzle]

What you said was written as a voice for all of us mets ladies and we need you to stay. Please reconsider as we need you
LD x

[Marirose]

Dear Tink please dont go you have opened alot of peoples eyes to what was a very potent video I first saw it on Facebook and I felt touched by it. All you did was share it with others that  wasn't wrong bless you don't take it to heart stay with us we need you xxx 

[springsummer]

I want to add my voice too. your comments were well balanced, thoughful and true!! You made a lot of sense. please do not get upset by such selfish negative comments - although I have not read them i can imagine what they say .  SS

[Barton]

Dear Tink - please don't go!  I'm joining all the others in a "Don't Go - Come Back" campaign!  Your comments were not at all out of bounds (as Belinda says, the Mods on here would have slapped your wrist if they thought your comments inappropriate). We all appreciated your posting of the video, and I for one considered your comments to be well-balanced and thoughtful, without being harsh. Hope to see you again. Hugs, Barton.x

[2catlady]

Tink,PLEASE DONT GO. You have not caused any upset ar all. You have shown how many people are still ignorant about SBC.
I was so glad you posted the link and I wish it was on the front page of this website.
But saying that we didn't even get a mention about our pin,bcc don't seem to want to raise awareness,or if they do its very low key and quiet.
It's people like you that help us raise awareness of this disease and educate small minded people.
Tink,don't make me get my angry eyes out!!!! Hugs,Helen xxxxx

[EJ81]

Tink please don't go! What you said was perfectly reasonable and in my opinion very restrained. You are such a great person to have on these forumss and are often brave enough to speak up when the rest of us hesitate. Please stay xxx

[sallyhennypenny]

Tink please don't leave the forum, you helped me out with that article about statins so for purely selfish reasons I want you to stay!!

[belinda]

Just a quick PS, I actually thought our differences of opinion were all very civilised. The Mods would have soon said, intervened if they hadn't been. X

[Lynnq]

Tinker belle I have to agree with Belinds. You did not cause any upset, yours was a considered and well made response. I have read all of your posts and have found invaluable support, comfort and advice in them. As I am sure many others have. Your input is too valuable to lose

Xx

[belinda]

Ooh nooo! Tinks not you as well. I was upset at the remarks on the other thread. Your postings there were nothing unreasonable. It was a heightened day, most of us were so cheered by Holley's video. It WAS upsetting to read the remarks on the other thread, the ladies there don't realise how often we are brushed aside, not listened to, look how long it's taken to get a secondary pin. We have one day for secondaries for the whole month of October. Personally I feel I am not being unreasonable to feel upset, hurt after reading negative feedback about a video made by a young Mum dying of breast cancer on the latest posts section of a Breast Cancer site. That said I hope nobody leaves BCC, primary, secondary. We all have bigger things than this to deal with at the end of the day. This is not worth anyone leaving the forums for. Please reconsider! X

[Tinkerbelle]

Just to say, I feel awful about the upset that I have caused and so have made apologies where necessary and I will now be leaving the forums.

Goodbye lovely ladies - keep on keeping on.

Tink x

[stresshead]

Just clicked on this thread out of curiosity and eventual found the links to the video...thank you ladies.

Watched it and was educed to tears...that woman has sid it all without saying a word....far from being slated it shoud be shown on national television!!!

[Stillhere]

Thank you, Mrs Goggins and Kilimanjaro for your lovely posts. There are some very wise ladies on this forum.....

[belinda]

Yes I share your concerns Barton, sort of best of both options would be best. I miss all those who joined the Facebook group, waves to Facebook ladies. X

[MrsGoggins]

Hi Kili and others, thank you for your responses to me but also generally as i feel blessed to be part of a group with such humanistic views....

x

[Barton]

Thank you, Tink and Belinda for the revised links to the video - I was able to watch it on YouTube. It was, in my opinion, a wonderful video -restrained, but making it's point in a succinct and clear way. I did not think it was at all "scaremongering", and have said so on that other thread (thank you Belinda for that link also). Thank you to all the PBC ladies who have shown support - you have been wonderful.     Thank you, too, Anna (BCC), for your help. When I first read your post I thought it would be a good idea, but then I read another post worrying that all the wisdom and experience from other posters would not be available to anyone who needed it. Would Helen's idea work - an area where BCC Forum members can all see the posts, but casual viewers could not? Barton. x

[kilimanjaro]

Lemon Drizzle and all you other lovely SBC ladies out there,

I don't think you are unimportant, although I fully understand why you may feel that way.

Since joining this site, which isn't so long ago, I've spent time reading through various sections and threads. I'm interested in what you have to say and I can learn from what you have to share.

I just want to thank you all for the posts you have made. x

[LemonDrizzle]

Tinks, that's awonderful reply but I find it so unbelievable and upsetting that there are any negative comments at all about such a brilliant post on Facebook. It really shows us where we stand and how unimportant we are. Thank you to the other ladies for your support though.
Anna, I do think some sort of privacy option is a great idea as I can't even put my name on this public one for fear or being 'found' by people I have no intention of sharing my thoughts/feelings/treatment with.
LD x

[belinda]

Hi Anna and everyone who has posted here, I think having the two options would be great. There are times when I temper my posts either because I don't wish to worry or distress or I'm mindful we are on the www. I went through a bad patch last Spring when I was very poorly and diagnosed with heart failure due to chemo damage. At that time I was lucky to be able to communicate with a very knowledgeable poster here, she is a star, by PM knowing she had experience and was very pro active in her treatment. Having a private secure place for groups of us working along the main secondary forums would be the best, I think, of both worlds.

[2catlady]

Hi,Anna, I think that's a great idea.they do that on the USA forum for SBC. It gives you the option to make your post private or public. So if you start a thread and tick private the thread stays out of the publics eyes,and can only be viewed if you are a member of the forum anybody PBC SBC so we are not split up into groups but a huge forum of people with bc regardless if you are PBC SBC. We will hopefully be hidden a bit more from jo public.
Helen x

[kilimanjaro]

Hi Mrs Goggins 

I've read what you've written on this thread and the other thread and I just want to say that I think that what you've written makes a great deal of sense.

About an hour ago I watched this video and it touched me, so much so that I watched it again.

Your oncologist is spot on when he wrote " for a chance of a cure from cancer" on your consent form. My oncologist wrote, " a chance to prevent recurrence" on my chemo consent form. The significant word in both is "chance."  As far as I can see, those in the medical world are loathe to use the word "cure" because they can't. All they can ever say is No Evidence of Disease, or in remission, in my opinion.

Right now, I am at the start of my treatment for primary breast cancer. I'm a realistic kind of a person and I know that it's a long journey ahead and that I will probably be making that journey for the rest of my life rather than reaching a destination. By destination, I mean that the medical team can actually put their hand on their heart and say we have a cure for all breast cancer and we can guarrantee it won't return somewhere else in your body.

Millions of pounds and dollars have been poured into primary breast cancer research, which is good. Today, we are at the stage where the same amount of money needs to be thrown into the secondary breast cancer pot.

Anyway, that's my opinion and I just thought I'd share it with you and the other lovely ladies, who have posted on this thread. x

[MrsGoggins]

Hi Stillhere....and thank goodness you are still here as I have read many of your posts of the past few months and drawn great strength from them.  I feel very strongly that my attitude is right for me. My mother had BC twice; 20 years apart and the first time only two years different to me.  She passed 'with BC' not 'because of' so was really able to live a full life and see me mature and produce grandchildren - all that I want from life really. I am so so sorry that you have been upset, as if you didnt have enough to contend with anyway.  I really do think that education of women is the way forward in being realistic about our futures. Of course we all wish to hear that everything will be fine and so it will for many many people but for others it is quite different - I dont wish that on myself but I want to be somehow prepared for what lies ahead.  I find it exhausting to tell friends and family what they want to hear time and time again.  I am so sad that you had come so far to be tripped up - people need to know it can happen not so that we/they live in fear but to make the most of each day and never to forget how lucky we are to have time.  I have had three life threatening illnesses in two years BC being the most recent - I hope things only come in threes but boy have I learned to take nothing for granted. What I hear from other PBC ladies is that they have thrown everything at it to ensure they have done all they can....I cant do that that and have to live with the consequences. There are no guarantees....as you say we are all in remission.....x

[Stillhere]

Thank you, Katie, for your kind post and your reply on the other thread. I have been really upset by the attitude of some of the primary posters, so much so that I can't reply. For goodness sake!! We don't want pity but when a lovely young mother has the courage to explain secondary breast cancer she gets slated for "frightening" primary posters!! It beggars belief when we are all sharing similar experiences.
I would like more posters to know that I would be in the 20 year survivor category despite a secondary diagnosis 2 years ago. Primary breast cancer ladies are in remission!! I sincerely hope that they stay that way, of course.

[nicky08]

Hi Mrs Goggins/Katie
Thank goodness we haven't frightened you off. It is lovely to hear your views and that you find comfort in knowing what the future could hold. As you can see all is not lost, especially when you read about the antics in the Cybe Cafe (enough said!) and your comment is certainly not distasteful in any way. I'm glad we are here to help by sharing our experiences, the ups and the downs of living with SBC.
Closed groups have been mentioned on many occasions since I became a member of this forum
, when I was diagnosed with SBC, and it seems to split opinions. I do like the idea of being more open with others by using a closed group (if that makes sense!) which is why I don't add many personal details generally as the forum is completely open to anyone who googles anything, but this closes off the information we share with each other and which I have found so useful over the past 7 years. Where would I have found out half the things that other SBC ladies have shared and that have affected my treatment (in a good way) as I was able to challenge my oncologist with decisions I wasn't happy with. Possibly a group that communicates in the same way as a private FB group does would work but keep the rest of the secondaries forum as it is? By splitting it into lots of separate private groups it would really break up our community even more in my opinion. Just some thoughts.💭💭💭 Thanks Anna for mentioning this.
Nicky x

[MrsGoggins]

Dearest Ladies

I just wanted to say that I have posted on the thread that has caused upset. Please please dont close yourselves as SBC peeps away from us primaries. I know that I am in a different place to you all for now but am completely aware that this may not always be the way.  I gain great comfort from reading about your lives and treatments as if in some way I am paving the way 'just in case' I do hope that is not distasteful to you but I do not feel that this is all sorted for me.  The reason being that I diagnosed with a relatively treatable case of Grade 3 Stage 1 invasive tumour with no node involvement but I have not undergone chemo due to other physical conditions that have led my oncologist and my husband and I to feel that it is worth the risk to see if what has been done so far is enough.  My oncologist is extremely concerned that chemo would most likely hospitalise me for most of the 6 months of treatment required and that currently the risks potentially outweigh the benefits. I have put this view on one FB group and got shot down as having let myself and family down for not taking all that has been offered to me.  This upset me as you will understand there are a myriad reasons for making the decisions we do and not all can be explained in the cold light of day. I would never suggest that I understand what you all experience as it seems there are as many permutations of treatments as there are people but what I gain from your world is that there is such hope, fun and friendship to be had even in dark times. Please keep your group open and educate as the video on FB has certainly done for so many. Lots of love and hugs Katie xxx

[Anna_BCC]

Hi Belinda and everyone

I was interested in why Facebook seems safer and I think that I can understand that at times maybe you feel unable to fully express yourselves and what living with secondary/metastatic breast means to you.  I wonder how many of you would be interested in a new function we hope to be launching in the very near future?

We now have the ability to create private/closed groups on the forum where only people who are invited can join.  Anyone can ask to join a group so that no one is excluded but it would be a group with a specific interest, for instance a group for those living with secondary/metastatic breast cancer.

This function is still being tested as we dont want to introduce something new before we are fully sure it works safely.  The private area would still be moderated, but the ability to share in privacy of a closed area would be greater as will the sharing of images too.  Yes, I hear you shout (hopefully)!  We have created the private groups so that images can be shared in a very safe area, where no one can read or see what is said or shared unless they are an invited member of the group.

I would be very interested in hearing if this is something you would feel would work for you and if you would take advantage of a closed/private group function.

Best wishes
Anna
Digital Community Officer

[Lynnq]

Thank you Belinda.

[belinda]

Hi Lynn, sent you a PM, here's the thread. X

https://forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/September-Sunbeams-2014/m-p/94...

[Lynnq]

Tinks I agree with Belinda yours was a dignified reply. I only wish I could be so articulate. I often see threads on these forums which touch and reassure me, but I don't post because I don't know what to say.

Is it possible for one if you to direct me to this thread, I probably won't post but would like to read the comments

[belinda]

Tinks, it's a wonderful dignified reply. I hadn't seen the post, until just now, about locking people up! As I mentioned earlier here it's as if those with secondaries are unable to read elsewhere or perhaps people just don't care or think of anyone apart from themselves. I saw Anna's BCC post just now too. I always read latest posts which is how I read this and another one, replied to that one (which has now been deleted by the author last week) putting forward the idea that having cancer can be a good thing. I think I will try and carry on here for now but if I feel unable to I will be in touch with the Facebook group. It would probably feel a safer haven. It's not, at all, the fault of BCC but there are times the gulf between us stage 4 and some others is too hurtful. After all this time I still find posts such as those were very upsetting. Ha Tinks it's not me being restrained it's because I'm not as skilful in my replies, it would be just %*$!!?£ grr.

[Tinkerbelle]

Belinda, you are far more restrained than I am.  I looked at the thread and the negative comments that were there were so hurtful it made me cry and I don't cry easily.

I have posted on that thread - was that wise? - maybe, maybe not, but it was that or curl up in a ball and keep crying.

I thought my post was fairly diplomatic but I could be wrong so if I get kicked off you'll know why.

This what I put:

Hello Ladies,

I hope you are all as well as you can be and getting through treatment as best you can.

I agree, the facts about breast cancer are frightening.  For me, and many others, what you are frightened of is our everyday reality.  Why do we want to be acknowledged?  MBC receives very little funding and as such there is little research to stop breast cancer after it has spread and we would like to change this.  Why? - so that we and the people who come after us can live longer. So that you don't have to be so frightened, so that you will have more hope for the future, so people will donate and not think it's a waste of time as 'nobody dies of breast cancer'.

These are not scare stories - they are the facts and the facts are scary and I know the fear very well.  We care about everyone with breast cancer and to be indignant that one person dared to show the reality of their life and suggest that we 'should be locked up' has done more than upset me; it has devastated me.  To be thought so little of while dealing with a terminal illness is heartbreaking.

Good luck with your treatments ladies.

[Lynnq]

I have just watched this as well. Like Nicky and Barton I am not on face book so might have missed it, so thanks to BCC for making it available. Straight to the point and gets the message across - to some people anyway!!

[nicky08]

Thank you Tinks for posting this. I hadn't seen the link on the main BCC website, mainly because I don't use the main part, just the forum. Unfortunately the tide will never turn and Holley's wish to educate won't happen until the facts are pushed to the front of any breast cancer campaign so women understand the facts and know that the holy grail of a cure just isn't here - yet. Sorry if that's a rant and I don't want this to turn into one or move away from the point of this thread - to pass on the message from Holley. What a great video, watched on YouTube as I also am not on FB, Barton!
Nicky x