Now that p*nk October is over, I thought I’d start a thread to collect feedback about how the month was for you… especially the 13th, which was Secondary BC Awareness Day.
First, my thanks to BCC for all that you have done for promoting this day, and for the many other ways in which you support people such as myself who have secondary BC. A special thanks for the booklet of tips (The little things that make a BIG difference).
see share.breastcancercare.org.uk/forum/viewtopic.php?f=95&t=34293&p=598114#p598114
But there is more that can be done… Ideas please! If anyone wants to PM me, that is OK, but because we can’t receive email notification of PMs [ big hint to BCC’s Web Development team!], I don’t promise to respond quickly.
Do we need a strapline? How about “Secondary breast cancer is for life [, not just for 13 October]”?
I had hoped to see more in the press about SBC on 13th but there didn’t seem to be much around (unless I missed it through the fog of chemo…)
Personally, I have found the support from my healthcare team to be pretty abysmal because of the way it is set up. Once you are diagnosed Stage IV and go off for chemo, no-one in the BC team really wants to know.
There is a woeful lack of resources for stage IV (BCC excepted and their living with SBC day was really excellent). I think on the BCC Voices newsletter it states that there are only around 20 SBC specialist nurses and approx 12,000 women living with the disease.
So much awareness - very little research into treatment compared to primary BC.
There was a lecture day at the Royal College of Medicine two weeks ago on living with secondary breast cancer, as I understand from my friend who went, they are planning more events like that. For the general public I think as long as sound bites like “cured” and “all clear” circulate, the reality that early BC can and does recurr as stage 4 is not well understood, I tried to comment to that effect on the Loose Women FB site last week for their BC programme and my comments and those of others on recurrence/stage 4 were removed by the moderators! It’s shameful.
I don’t do Facebook or other social networking because of security concerns, but this should surely raise howls of protest!!!
Typing “secondary breast cancer awareness day” uk into my search box this morning gave 114 results, of which BCC were 1,2,7 and 8 in the top 10.
The others included Judith Potts’ Telegraph blog, Steve Brine’s Early Day Motion in Parliament (2010!), and Macmillan’s online community.
Can we complain? - it’s a total whitewash. Inspiring women, my ar**! (As Jim Royle would say). I had a similiar situ. as an Avon woman a few years ago after primary BC - they too are meant to be woman-centred. This attutude makes my blood boil after reading about what these lovely women on here are going through.
I did have a reg.recurrance in 2010, so I don’t strictly have secondaries,( at least not in UK, apparently in US I’m a Stage 4). I do identify more with those with secs., though, and have corresponded on this site mostly with those ladies. I do feel incredibly lucky to have had successful treatment up to this point, but, as I said, feel very annoyed with all the rather biased media coverage re: BC.
big hint to BCC’s Web Development team!], I don’t promise to respond quickly.
