Hi everyone,
Having closely followed and read all the comments about Secondary Breast Cancer Awareness Day 2013, we now want to ask you to share with us here what you would like to see happening in 2014.
Some people have talked about changing the date. Others talk about issues they feel are important which should be highlighted. Whatever your views and ideas, we would like to hear them and ask you to help us shape Secondary Breast Cancer Awareness Day 2014.
Diana Jupp, Director of Services, and Andy Harris, Director of Fundraising and Marketing, will be responding to many individual comments while the thread is open throughout October. We will be using your comments, questions and suggestions to inform any further awareness and service development. Please post your comments, suggestions and questions on this closed thread so that we can be sure we capture them all. This is a very real opportunity for blue sky thinking.
With best wishes,
Your Forum Team
The effect that a secondary diagnosis has on mental health. Living in constant fear of more spread, becoming hypocondriac, not being able to plan ahead, the stress of scans, the unbearbale knowledge that there will be no end to treatment! Constant pain.
We might look well, we might pretend to fell well but all of the above are a permanent reminder of the mental burden we are leaving with.
I feel that a lot of it was said on the very lively thread on here about SBC awareness day 2013. I also completed a survey if I remember rightly, although my memory is one of the things that suffers too …
The day we are allocated - 13th - is a rather unfortunate number . I also question the logic that we only get one day out of a month.
On a more positive note, I do like the BCC #whatnottosay picture - this did ring very true with me! More of this would be great.
Having SBC is a bit like always having a radio on which we can turn down but can never turn off, how ever much we’d like to.
If you want an example of a story about MBC that should be getting out into the press in this country nytimes.com/projects/your-breast-cancer-stories/?story=1136
Where is this kind of coverage in the UK? I know that this is partially out of the control of BCC but at least these stories are real and not just the kind of air brushed Pink stories that normally seem to appear. From what I read of other stories there is no divide here between MBC and Early Stage - they are all just personal experiences of living with breast cancer.
Focus on major newspapers, magazines, TV (not just social media).
Real quotes from those of us with mets. Real photos/videos. Not just what BCC think should happen - I’m detecting a does-she-take-sugar attitude among BCC staff, which is getting worse not better.
Lots of statistics.
A fair allocation of funding for metastatic/;advanced bc.
And yes, probably get rid of the unhelpful word “secondary”.
Thanks for the advice about getting help but … my main problem with getting support is that I am not dying quickly enough. I had CBT therapy, but they cut me free with the promise that if I had problems within six months I could just go straight back into the system. They lied. When I called I was told I would have to referred all over again and there was not guarentee that I would see the same therapist. I saw the counsellor at the local Hospice for a while, but again I didn’t die quickly enough so they discharged me. When you are in no-mans-land of being stable no one is interested in supporting you. My brother and his family are too busy to do anything to help me, except occasionally to ask me round for a meal. If I drop in I feel as though I am intruding, or no one is in. That said my niece is supposed to come an help me clear some stuff out of the house next week, but I’ll wait to see if she actually turns up. It is usually the case that if there is some paint to watch dry somewhere that comes first.
Part of the problem is that so few people are aware of MBC because there are three stages of breast cancer … being a survivor, having a recurrence and end of life/death, and most folks know all about the first ‘Pink’ stage, wants to ignore the second, and only vaguely acknowledges the third when it is quoted to raise money for a ‘cure’; aka treatment for Early Stage Breast Cancer.
At the moment I am off work with depression and stress from having had to work the equivalent of over one and a half extra weeks in the last 7 weeks and now being told I have to get out of the office I have been in and go into the big main office with people who made a friend’s life such a misery when she worked there that she left … or in a converted cupboard. What is even worse is that the people moving in to the office I was in don’t even work for the organisation!
Do I feel as though I can express any of this … no. Why? Because breast cancer is Pink and it is all about survivors who on the whole would rather eat something from the jungle than admit that we exist. After all be don’t want to stress them out, do we? They are the important ones. They have Primary BC and they are Survivors.
Oh you go girl. I do think a lot of us ladies struggle emotionally and there is not the help out there for us. My BCN asked me as I couldn’t stop crying do you think your depressed because you haven’t come to terms with your diagnosis yet!!! NO ,I’m just p###ed off as nobody has bothered to check if I’m okay!or coping mentally. No,I haven’t come to terms and I won’t. Same BCN was the one who said “you could be hit be a bus tomorrow”
We need properly trained MBC nurses ,this should be our right and not just something we hope for or pot luck.
We need the public to be aware of us and we need our fair share of funding to help with treatments and hopefully a cure soon.
We do need a new date too,the 13 really,That was like rubbing salt in the wounds .