Hello
I’ve just read through this and am a bit surprised to get the impression from it that there are only two kinds of outcome; either a) stage 4 with its difficult prognosis (I know thats a hideous understatement but am concerned, as someone who is not at stage 4, that I use any wording that could cause offense to anyone who is at stage 4) or
b) a primary thats relatively successfully treated.
For most of us, we live in fear of it and thats ongoing - most people fully understand that stats are usually based on survival to 5 years or max 10. A lot of people fall into categories where they have a high risk of recurrence, and some of us with a so-called low risk of recurrence have one anyway. There are people like me, I would think a significant number, who are in neither group a or b but somewhere in the middle and getting on with life - I don’t see where the choice is. Between my first and second dx I was main carer for both my parents as they died. I had 2 children aged 11 and 9 to bring up, and a husband who is chronically depressed. I have been the family’s main wage earner for many years. I’m nobody special, my situation’s not unusual. If you don’t move on in some way, where do you go? how do you live?
All I’m going to say is I know I’m now in a precarious position. I can’t work at present because of the fall out from all the treatment I’ve had and am having and am looking at retiring from a job I used to love, aged 52. I can’t see whats wrong with wanting to move on from where I was when I was dx’d again, or where I am now, for that matter. Life is beautiful. One day I’ll probably be at stage 4. I hope that I still feel that life is beautiful, and that I want to keep moving on from the worst moments.
I hope that people new to the site get a bit of hope from it. I wouldn’t begrudge anyone a hopeful, positive message. We’ve all been at the point where we were suddenly introduced to BCC and had to start to find a way through it, and know its frightening.
This is my perspective, and of course I mean no disrespect to anyone else’s but its a complicated issue and I don’t think there are any rights or wrongs, but different, equally valid, points of view.
Mike I have a couple of comments about your response to the issues raised here, and would like BCC to answer them please.
(1) You say in your response that the moving forward gallery is intended for people with a primary diagnosis, but that does not seem to be stated anywhere on the gallery home page. The categories simply refer to the time elapsed since diagnosis or the completion of treatment. Unfortunately, the consequence of that could be that newly diagnosed people (particularly if they have been diagnosed with a regional recurrence, or stage 4), might not appreciate that the gallery only relates to those with a primary diagnosis and may be confused or misled as a result. Consequently, will BCC please make it clear on the gallery home page that the images/stories depicted only apply to those with a primary diagnosis?
(2)Please can BCC explain why there is no moving forward category for stage 4 patients? Many patients are diagnosed stage 4 from the outset, so why are BCC restricting messages of hope to those with a primary diagnosis? If someone has a recurrence or is diagnosed stage 4 they surely need to see others in a similar position, not just those with a primary diagnosisi. BCC are no dount aware that life expectancy is increasing for stage 4 peeps, and so most of us do have to move on (or at least find a new normal), so why not reflect that?
I’m not opposed to giving positive messages, but I just want to make sure that everyone can share in that.
Hi Lilac
i think you should put exactly what you’ve just said on your post up on the gallery, its spot on. Its good to be able to look at the gallery and realise its not just you having bad days. There is comfort for to be had for those beyond initial dx in seeing that you’re not alone, and hope to when you read that despite the difficult days, there are good experiences out there. Its up to us, the forum users, to submit the accounts we’d like portraying. I’d be interested to know if BCC have edited anyone’s blurb to change its emphasis/content. People have to submit their “honest” balanced accounts for them to appear surely?
Thanks for the encouragement, tors, I have just submitted my story to the gallery.
Lilac x
There is one stage 4 story (Karen) on the First Two Years gallery.
X
Hi Sweetanimo, I think Karens post is great, but unless BCC make it clear that the gallery is for those with a primary diagnosis, this will lead to confusion (and if stage 4 peeps post on a gallery which BCC say is intended for those with a primary dx, this will compound the muddle). If I was someone who was recently diagnosed as stage 4, and had been told my condition was incurable, I would find the information, and most of the experiences described very confusing.
My preference would be to have a moving on category for stage 4 people, in addition to the 2-4 years, 5 years +, etc. After all many of us stage 4 people live longer lives these days, and so we do move on/find a new normality, so we can give positive messages too - and why shouldn’t stage 4 peeps have positive messages?
I must confess that when I first saw this thread I was quite gutted that I couldn’t contribute and came close to registering my feelings! It is a great shame that so many that have so much to contribute are being excluded from this opportunity to share with others in a positive way. I thought maybe ‘Getting on with Life’ would be a more appropriate title. ‘Moving on’ stirs up a lot of the wrong sort of feelings. Many of us can’t ‘move on’ from this - we have to live with it. Having ‘lived with’ it for almost 21 years now, including many recurrences, and 9 of them with 2ndaries I really do think I am getting on with life in a very positive way. I know that not everyone is so fortunate to have lived so many years after dx but I would like to think I have given many hope that they might.
Dawn
xx
Agree LG - just flagging the fact that it’s there.
hi
as someone who has only had a secondary dx (my primary has never been found)I feel totally excluded from this.Whilst I think the idea of newly diagnosed people having somewhere to look for hope, this would have been totally useless to me.
I was totally devastated with my dx and needed to know that there was some kind a future for me and that my life was not over.
I have now come to terms with my dx, and following treatment have had to find a new kind of life.If not actually moving on I have found a new type “normal”.
I cannot do many things I could previously, but I still have a reasonable quality of life and I would have really appreciated a site which gave me some hope when first dx.
My feelings are that we are all dx with bc and are members of the same club,be it an unwelcome one, and it should be inclusive rather than exclusive as this gallery appears to be.
Just my thoughts and do not want to upset anyone.
Could I suggest an on site link to the Gallery in the ‘Living with…’ section on the left?Maybe there is one but I cant find it.
I feel the addition of a part of the gallery for stage 4 could also be useful.
V
A suggestion for a change of name. How about ‘Finding the “new normal” after cancer’ or something like that? Or add a verb at the end? Or “… after cancer treatment”. You get the idea. Would that give the right inclusivity?
Hi,
I posted on the other thread which has now been closed, I’m pasting my original response below,basically I agree we need hope but that needs to be inclusive and yes perhaps a change of title and space for people at all stages would be helpful.
Original post :
I’m not going to say much on the actual topic as I don’t particularly want to become embroiled in controversy. All I will say is that I am stage 4 and I too like hearing positive stories, I like to provide a positive story too whenever I can, living with breast cancer at any stage is no fun but we can all learn from eachother and support each other. I think that Lemongrove is right in the fact that the gallery could be called something different(but still be positive), moving on is perhaps not the best title. I think it important too that we present a balanced picture, the gallery could also include stage 4 stories, there are lots of us adapting to a ‘new normal’, living with and making the most of our lives with cancer. There are newly diagnosed stage 4 women that use the site too and they will be looking for stories of hope and positivity (I certainly did). Perhaps a title like ‘Finding the new normal’ or something similar would prove less controversial than moving on?
Lots of women do survive bc, lots have recurrence, more than is realised get mets, many die. Those are the facts. What this site also provides is the shared sorrow and the shared joy,the celebration when things go well and the support and sympathy when they don’t, lets not lose sight of that. Yes, I have mets, yes it’s scary, yes I wish I didn’t …but on the whole life is still good and I’m living my new life and I take comfort from other women living their new lives,all our stories,all our lives are valid.
Well considering I wasn’t going to say much this has turned into a long post, I hope that no-one will be upset by any of it, just trying to calm the waters!
All the best to you all, love Julie xx
Hi all,
After speaking with the BCC Moving Forward team, they wanted to post a quick response to clarify a few points:
The Moving Forward gallery is primarily aimed at people who have completed treatment for primary breast cancer and have not had a diagnosis of secondary breast cancer.
We also hope that people who have been diagnosed with primary breast cancer more recently, and have not completed treatment, will find the gallery useful.
People with secondary breast cancer are welcome to add their photo and we hope the gallery may also be useful for them.
The gallery is called Moving Forward as it’s part of our Moving Forward range of information and support. We developed this range of information and support in response to user feedback. As well as informing the content of information and support, our users also informed the name. ‘Moving Forward’ was the most popular.
Thanks again to everyone for your feedback. I’m now closing this thread. You can find out more about Moving Forward at breastcancercare.org.uk/movingforward