I don’t think having a Key Worker is much of a priority for me either!
I tend to talk directly to the most appropriate person I know, about any concerns I might have, at the first opportunity I have. If this Key Worker is supposed to talk to the rest of the team looking after me, on my behalf, I’d worry about it slowing things down or the messages (forwards or back) subtly changing because they’d gone through a third party.
There is also a risk that this Key Worker could just turn into another barrier - i.e. someone we are supposed to talk first, to instead of bothering the oncologist?
Ah I know who you are now. You were on the right side of the room about two rows in front of me (I was on the left side) near DippyKate (asking all the questions) weren’t you? Not much help to you I know, but I can put a face to you now!
Being new to breast cancer - my primary and secondaries were diagnosed at the same time - I thought Wednesday was a good insight into the issues that currently cause concerns for those with secondaries. It was useful to hear the discussion about the different treatments and postcode lotteries.
Personally, I have not built up a relationship with our breast care nurses - and get all my information from the very knowledgeable users of the forums.
What was great for me was to meet you all - particularly Dawn and the girls that went to the Albert. Hope you all got home OK.
My former colleague from the PCET course - the name is Tricia Myers…
Jenny - sorry I have lost your email details - would it be possible for you to get my email address from bcpals website as I would love to keep in touch.
I am not a member of bcpals but I think Kate is. If anyone else hasn’t lost my details and is a member of the other site, could they pass them on or get in touch with Heather?
Just to say big thanks to you all for feeding back on this. I was really disappointed i couldn’t make it, but now feel quite up-to-date with the issues.
What a bunch of thoughtful, articulate (well, most of the time!) sensible women - we should run the country!
love Jacquie
Can’t help agreeing with you holeybones - it all feels a bit brisk and breezy to me, as is so often the case in articles for general public consumption. It hardly touches the issues.
What do others think?
Jacquie
I agree with Jacquie and Holeybones. This woman is also featured on a BCC video (which was shown at the secondaries event on 24th October.) I think it is always dodgy to use one woman’s experience and thoughts as though they were standard or typical.
I think Jane you’ve summed it up very well - it is difficult to portray how we all feel with just one person’s perspective because for all the people who can relate to that, there’s always going to be other who don’t at all.
I wonder whether they were trying to take a middle ground in their article but it really doesn’t address how awful that diagnosis is, the psychological impact for us etc etc and I don’t think that’s necessarily Sue Keir’s fault as sometimes the media have a knack of not always putting exactly in print what we say!
At least we’re starting to get coverage (although not how we want it) and Amoena will also be covering secondaries in their next edition - it’ll be interesting to see what angle they take…
Hi, I liked Sue’s article. She said, described, pretty much how I feel about living with stage 4.
Absolutely agree that we need more than one person’s perspective though.
I think I’d rather see NO COVERAGE than coverage like that!
It amazes me that a charity would want to push a story about someone whose life seems almost perfect, when you should be trying to get sympathy and increase fundraising?
Instead of a grandmother how about a young mother who won’t live to see her children grow up? Or someone who will now miss out on having children?
How about someone who doesn’t have a husband supporting them, but is struggling to live on their own on a limited budget?
Maybe someone who finds it difficult to walk because of bad bone mets or cannot drive because of brain mets? Both can end up confined to the house most of the time and very lonely.
Sue’s story will appeal to those who think she resembles them, but will annoy anyone with problems who doesn’t resemble this image. I don’t blame Sue for any of this, but feel that her story on its own creates a misleading impression of life for the majority.
Probably the answer is to stop writing stuff that will appeal to Women’s Magazines, who love happy human interest stories and write less personalised, factual stuff that will be taken by the quality press? Men are usually the decision makers (they have most of the top jobs in the Government and the NHS) so we need to get the message across in publications that they read also.
By and large magazines and newspapers present stories in a way they think their readership will like. You don’t get anything radical in Woman and Home. You wouldn’t get an article like Dina Rabinovitch’s excellent last piece in Woman and Home…fits much better with the Guardian which published it.
Yes I find the piece in Woman and Home extremely irritating… I’ve never felt privileged to be enjoying life so much now I’ve got a recurrence nor have I ever thought I could ‘defy science’ but such sentiments are standard fodder for some magazines. This is how some women undoubtedly feel but not all of us.
It is extraordinary that the piece in Woman and Home says nothing about the treatments that the author has had/is having. Continuing treatment…and its side effects is part of the life of anyone living with secondary cancer…surely it has an impact on even the breeziest person?
I am getting increasingly angry about this whole subject. I never used to feel ignored as I had the support of the hospice but looking at the wider issues I do feel ignored and I don’t believe that the collecting of stats and a key worker (where is the money supposed to coming from for that when they can’t even afford to fill the vacant BCN posts??) is going to make much difference.
The fact that so many women present late with secondaries because either the GP missed the signs or women themselves did not understand that secondaries could present in such a way, is surely something that should be given a higher priority. You don’t see adverts about secondary cancer do you?
I feel the media should be hassled more into presenting what life is really like living with secondaries. I know that there are a lot of women who do manage a ‘near to normal life’ with mets but I can’t believe there are that many who can say their life is the same as it was before secondary diagnosis and this needs to be publicised.
I know that sometimes I come across as a sort of ‘superwoman’ but I couldn’t do it if I didn’t have people cooking me dinner and doing my housework so that i can spend time doing things with my family. I am so lucky in that respect as the help I receive does give me opportunities i would never be able to take otherwise.
I feel very strongly that the media should look at how women are affected by secondaries - especailly those whose disease stops them physically doing things or being able to function in any normal manner.
As Jane says - it is extraordinary that no chemo treatments et were mentiond in the woman and home article. I’ve been at the chemo unit every 3rd week and often more frequently since april 05 with no break. There are women there who go there every week and have been for over a year to control their mets. There is no mention about the feelings that you will never see your child grow up, see through your retirement plans or the impact that the mets and chemo/hormones have on your quality as well as quantity of life. There is no mention of women who are housebound because of their disease and as Dina Rabinovich, those of us with small children still have to get up , make packed lunches attend school functions etc regardless how ill they feel. We are an underclass and I do feel angry about this and I can not see how the aims of the secondary taskforce will help me feel better about this as I can not see how a key worker is achievable. Stats should be achievable but how is this going to affect the qulaity of mine and others with mets quality and qualntity of life?
We need action and info re treatments, support emotionally and physically and this is not beng addressed.
Could go on but hubby needs computer.
BCC - if thre is anything I can do to publicise living with secondaries please contact me
Stats are not an end in themselves. They will not directly benefit us as you say. However, without stats it is impossible to cost up anything that might be done for us, so it is a necessary first step. As I said much earlier, it is just a shame it has taken the Secondary Taskforce over two years to get started.
You are also correct that the help given by hospices and general cancer charities such as Macmillan, often stop you noticing the lack of support from breast cancer charities. While we are relatively fit and able, BCC tell us we just have a chronic disease. When we get to the point where we are even accepted by BCC as being terminal, they leave things up to the hospices, Macmillan, Marie Curie etc.