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Sad & Frustrated at this disease

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Re: Sad & Frustrated at this disease

I so agree, Snoogle, it makes me so angry too when the government makes out that funding this costly cancer drug will deny other equally worthy causes. A reporter (Lawrence McGinty on BBC1 i think) said that funding this liver cancer drug would be equal to buying 16 of the new, improved CT scanners that they featured on the programme about a week ago - it ISN'T a straight either or situation. How about we stop funding all the immigrants that arrive in this country expecting us to feed, cloth and house them for the rest of their lives or denying criminals in prison all the luxurys that they have in order to fund cancer drugs, (some of which, like Lapatinib, are readly available throughout the rest of Europe). Gordon Brown was on the This Morning programme yesterday congratulating himself on bringing the survival rate for breast cancer to 90%. Does he mean the 5 yr survival rate? I think he must do, which as we know is not the same as there are many of us, myself included, which come into that category but are still dying of this awful disease.

Linda
x

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Re: Sad & Frustrated at this disease

Hi there, Those people at nice have just turned down a drug for liver cancer patients because at £3K a month it is too expensive. I get so angry when hideous amounts of money are spent on protecting the identity of child murderers. How many cancer patients could be treated with the money? Who do we value most in society? Begs the question doesn't it. The human rights of convicted criminals put above the medical treatment of the law abiding and ill.

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Re: Sad & Frustrated at this disease

Was interested in this thread, but haven't really gone back on it.
I have been using the Forum for about 6 months now and often find it hard to get into a thread. Most people seem to have known each other for ages and I feel a bit of an outsider. I come from East Kilbride near Glasgow and there is a thread of about 12 girls who all live in Glasgow and area. They are mostly young women and are so lovely. I don't know how they manage with chemo SE's and young families. I am older ( 60 ) and have had secondaries for 5 years. I was first DX in 1997had mastectomy, chemo, tamoxifen and everything seemed OK. Totally devastated when secondaries diagnosed. It is on my ovary and pelvic area. They can't operate. Been on Taxotere and Xeloda on and off since then. Just started 4th course and don't know how many. It is successful, but tumour grows when chemo stops. Last time I just had a break of 4 months. Every time seems to be a bit more difficult to cope with. The usual SE's - tired, nausea, sore joints, etc etc Reading this back sound a bit miserable - I'm not. I have so much to be thankful for and appreciate life. I even got my free bus pass last month !!.
Like Val, wish I know about the support of BCC and the forums.
Just recently heard one of the younger girls on my thread just finished all her treatment when it was discovered it had spread to her other breast. As you can imagine she is devasted. There is a drug that could help her, but not available because it's too expensive. This just gets me so angry. How can the NHS do this to a young women. We should all be fighting government depts who make these decisions. Maybe they should be made to visit Oncology Depts and see the bravery of so many women facing treatment and an uncertain future.
Take care everyone
Sheila

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Re: Sad & Frustrated at this disease

Hi Snoogle

We set up a site which you can find by going to my profile, I am not allowed to post the link here.

It is no active at the moment as only a small handful of people were able to commit any time for various reasons.

I am more than happy to try again - I went through a bit of a low when AnneTh passed away as she was one of the forces behind setting the site up. There is lots we could do!

all the best

Fiona

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Re: Sad & Frustrated at this disease

Started rereading this thread, but the tears welled up.

I have questions, is the facebook group that was going to be started, actually started and if so is it still going? I wasn't on facebook then, but am now.

Snoogle
x

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Re: Sad & Frustrated at this disease

It felt very strange, to me, re-reading this thread, it was only started in April this year but just a few months later I am re-reading posts left by those who have since died. All very sad.
x

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Re: Sad & Frustrated at this disease

Hi Holeybones, Thanks for bumping up this thread coz I had missed it completely and have found it very helpful. I have read many of the posts from the beginning of this thread coz I didn't know about this site when you were all writing to each other about coping with secondaries etc. I wish I had known of such a site when I was diagnosed with secondaries 10 years ago ( but I didn't even have a computer then so it wasn't likely I would). But at the beginning I found it a very lonely and secluded place and I did not know even one person who had bones mets.....infact thought my days were numbered. I think I have got my head round it now......had plenty of time to.......it has been really difficult at times... but I do feel differently about the diagnosis now,,,,,and am pleased to still be around. When I was diagnosed aged 39, over 20 years ago it was very rare to see any younger women with the disease The time that nurses had to support you was better in those days. Now when I go to the wards they are so full of people, so many of them young, and the care they are receiving is lacking somewhat because there are not enough nurses to care properly for the number of patients now. (This is merely how I see it). But the fact that we can come on to a thread like this and talk about secondaries and support each other is one of the best things that has happened to me this year and I only did because I was looking up the web for information about the difficulties of tooth extraction when you have been on Biphosphonates. I did have a " wobbily" a few months ago and was at a really low ebb. Couldn't pull myself out of the hole....but the support and love I have found on here has been so amazing. So thank you all for opening your hearts and putting down in words your fears and thoughts. It is good to know there are others out there who know exactly how I feel. Love to you all, from Val ( Scottishlass)

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Re: Sad & Frustrated at this disease

Re: Sad & Frustrated at this disease

I'd like this made an active thread again, so those more recently diagnosed as Stage 4 can see how far adrift the Secondary Taskforce was, in relation to meeting our needs.

Don't keeping telling those with Secondaries what is good for us. Let us tell you what we believe to be the priorities.

So, we want among other things:

(1)Proper recognition that we exist and statistics to back it up
(2)More support against delays / bans created by NICE
(3)Events planned specifically for those with secondaries so we can meet those with similar problems and continue to give mutual help and support for free

What we don't want is:
(1) Money squandered on unwanted emotional support from professionals
(2) Automatically being given Keyworkers to help us (because some of us are more than capable of looking after ourselves).

From someone who always felt she was on the "naughty table"!

Holeybones.

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Re: Sad & Frustrated at this disease

Hi - have scheduled a chat at 8pm on the other site if anyone can join us you'd be most welcome. If you need the web address it is on my profile.

Hope everyone is enjoying the sunshine

Fiona

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Re: Sad & Frustrated at this disease

Just in case anyone is interested - I have had another reply from Breakthrough regarding the Prima competition. They have scheduled a meeting to discuss the issues I have raised and all emails of complaint have been forwarded to Prima.

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Re: Sad & Frustrated at this disease

In yesterday's press a ten year old girl was reported as having breast cancer and today a girl aged eight has ovarian cancer. That is just so sad and frustrating.
Love Debsxxx

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Re: Sad & Frustrated at this disease

Bumping it back up in case people want to check out fionam's profile and join us on her site

J xx

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Re: Sad & Frustrated at this disease

I have replied to her and posted my response on the other place.
You still have time to add a few lines to the growing chorus of disapproval Jane.

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Re: Sad & Frustrated at this disease

Dear Jane RA, Don't feel guilty, you have enough on your plate and it was great that you spurred others on!!
Best wishes Leadie

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Re: Sad & Frustrated at this disease

Interesting...needs them to go one step further and say they're not going to be involved?

I feel very guilty..having been the person who drew this to everyone's attention do you know I never got round to complaining myself...

Jane

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Re: Sad & Frustrated at this disease

PRIMA/BREAKTHROUGH COMPETITION

I have received a response from Sophie at Breakthrough. This is it:

Thank you for your e-mail regarding Prima Magazine's Woman of Courage Awards. The opinions of our supporters are very important to us, and I want to take this opportunity to explain the award in a bit more detail and answer some of your concerns.


Prima’s Woman of Courage Awards has been running for several years and is a Prima initiative, not a Breakthrough-run award. We have a long-standing partnership with Prima and benefit from this in many ways, primarily through features, articles and interviews with people going through breast cancer which help raise awareness and provide information and advice for women affected by the disease. Prima also helps to promote our fundraising activities, which many of their readers take part in and raise a lot of money for. We are extremely grateful for their continued support and hope that it will continue for many years to come.

The concept of one woman being more courageous than another is not the purpose of the awards, which aim simply to acknowledge the different experiences of women going through breast cancer. We appreciate that not all women would want to be nominated or involved but we also know that those women who have been honoured with an award in the past have been thrilled to be a part of it. For many supporters, reading about the experiences and stories of women who have, or have had, breast cancer can be incredibly inspirational and educational.

At Breakthrough, we take the views and opinions of our supporters very seriously and I would like to apologise for any offense caused by us including the Woman of Courage Awards on our website. I want to let you know that your letter has been forwarded to Prima and we have already spoken to them about making changes to this concept next year, so I can assure you that both Breakthrough and Prima Magazine are taking your concerns seriously and acting on them.


Once again, I am very sorry for any distress caused by this award and, although many women enjoy entering and being nominated for awards such as these, I do acknowledge your concerns.

I do hope you will continue to support Breakthrough and the work we do to. Please do not hesitate to contact me again if you have further concerns.

Best wishes,

Sophie

Sophie Collins
Fundraising PR Manager

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Re: Sad & Frustrated at this disease

I think ICPV looks really interesting..and up and running... so I reckon that any 'group' coming out of this thread should collaborate closely.

Also I still think that as individuals we can each do our 'bit' within our own skills and experience..letter writing, lobbying journalists etc. Together yes we are strong, but only if we know what we are together on.

Jane

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Re: Sad & Frustrated at this disease

Hi Daphne! Hope you are well, it was lovely to log in and see your name here.
So much interesting stuff to read through and so many ideas. Fresh thinking..it's great.
Belinda..x

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Re: Sad & Frustrated at this disease

Thanks Daphne for great update on your latest campaigning.

I don't in any sense see my self as 'belonging to' BCC. They just happen to run these forums which on balance I think are the best UK breast cancer forums.

I've done this and that with BCC and Breakthrough over the last 5 years and expect health willing I'll do this and that again. For example I was due to run a seminar for staff at BCC on the perils of the 'think positive' agenda...they were really pleased I offered this. Sadly couldn't do it because since cancer took my old speaking voice I have lost confidence in speaking publicly.

For me 'coping with' living with cancer is helped by engaging my brain as well as my emotions. And I'll do that wherever it looks interesting but I don't want to join any groups.

Jane

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Re: Sad & Frustrated at this disease

Thanks Daphne!
Over to the others for comment now. I'll shut up!
Best wishes
Anne

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Re: Sad & Frustrated at this disease

Thanks Anne, I agree secondaries patients have to prioritise the stuff that's really important and I understand that there's a very good case for staying small. Also it's important to balance what you try to do with members' health.

My thoughts are if you get your group going and agree the priorities, that's the time to look at whether other organisations like ICPV can help you achieve specific goals faster than if you did it on your own.

We're not going to try to interfere with what you want to do. Just call on us as and when you feel it might help and we can discuss.

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Re: Sad & Frustrated at this disease

Hi Daphne
That sounds really interesting. Thank you! It will take some time to digest it all.

My only concern is that we are advanced cancer patients who are facing very uncertain (or not) futures. Our voices are here now and it is important they don't get lost or our points lost on a big list of priorities. It's a very sensitive issue. In our case staying small may be better, I don't know.

I'm sure collboration is a good thing however, especially when it comes to trying to address research issues. I'm sure the others will have opinions too. Media issues specific to advanced BC could easily get lost when discussed within a larger audience and these issues are very important to some of us.

There's a few of us on here with various talents and that's important for a team but everyone should still be able to get their voice heard. I think my waffling drowns every one out at times!

It's really great to know that there is so much happening and thanks again for bringing it to us here.

Anne

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Re: Sad & Frustrated at this disease

Ok, thanks for your replies, I do understand now why there is a need to communicate elsewhere. So much information has been given on this thread leading to other organisations etc which I would love to follow up - if only I wasn't so unbelieveable tired. Like the title of this thread, I am indeed sad & frustrated at this disease. I am frustrated that I don't have the energy to read all these links at the moment but I hope I will be able to soon. Well done to all of you taking action now.

P.S. Debs, I think my family would like some advance warning if I was going to be chained naked anywhere so they could leave the country first.

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Re: Sad & Frustrated at this disease

For the first time in ages, I just lost one of my essay posts again!
I can't possibly repeat it but let's just say, I won't leave BCC, it's been a great help and continues to be for me.

I felt as if I was risking it with some of my comments re institutions, charities etc plus felt that we were just bouncing stuff around. Plenty of voices but none of us really being heard.

Independent discussion outside the 'pink arena' is a good thing. We are all individuals with our own opinions. Do we always have to stay under the umbrella that charities such as BCC kindly provide.

Plus, if we form a netwrk or team, there will be continuity to our voices. As individuals we will eventually fail but as a team, our voices will still be heard.

Now, I've noticed there's another post so I'll shut up now. Just to say, I hope that we would have BCC support- they have plenty to do and they do a great job!

Anne xx

PS Belinda I think you were spot on! agree with it totally

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Re: Sad & Frustrated at this disease

Thanks for that Daphne, will have a look now
Leadie

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Re: Sad & Frustrated at this disease

Hello all. It's been really interesting reading your posts. Much of what you say strikes a chord with primary as well as secondary patients.

I have a couple of suggestions:

1.What comes across really strongly is frustration that there is no independent, radical breast cancer advocacy group in the UK. The good news is there is. We are called ICPV - Independent Cancer Patients' Voice. It's early days but we have a lot of interest from researchers and medical professionals, including those involved in research into metastatic breast cancer. Some of us have done Project Lead training with the National Breast Cancer Coalition and one of the things they teach us is to work with scientists to promote research into the questions breast cancer patients want answered. I think we are pushing at an open door. It seems to me that some of you are very motivated to form your own advocacy group for secondary breast cancer. If you do, ICPV would be very interested in collaborating with you to promote research into metastatic disease.

We have met both Breast Cancer Care and Breakthrough to tell them about us and both organisations have been very receptive about exploring how we can work collaboratively with them, while remaining independent.

I'm never sure whether I'm going to get moderated if I post a website address so I'll play it safe and say if you do a UK search in Google for Independent Cancer Patients Voice, our website should pop up. And you can email us from there.

2. If you want to create your own discussion group, you could try Google Groups. ICPV has got one. It has a security feature that enables you to ensure members join by invitation only, therefore it is completely private. As well as having discussions, you can share information by uploading files, and linking to research papers on the internet. If anyone wants to set one up, PM me and I can send you more details.

ICPV is not the first independent patient advocacy group in the UK. There are others I know about - Breast Cancer UK and their No More Breast Cancer Campaign, the Scottish Breast Cancer Campaign, IBC UK campaigning for research into Inflammatory Breast Cancer and I'm sure there are plenty of local advocacy groups like the Breast Cancer Unit Support Trust (Google bust bristol)It started off in 1991 as a fundraising organisation supporting its local breast unit, and has extended its remit to become a key stakeholder working with PCTs, NHS Trusts, Clinicians and Local Authority Overview and Scrutiny Committees on a Review of the future of local Breast Care Services.

My experience is that when you get together with like minded people to change things for the better, you realise how talented people are in so many different ways. That really helps to motivate everyone and makes a difference.

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Re: Sad & Frustrated at this disease

I don't think anyone wants to leave BCC, but it has limitations.

If we want to put together documents and have these available for review the BCC policies won't allow us to do this. Similarly if we want to create a library of documents from the web that is hard here.

Don't want to alienate anyone and we all have a different approach to dealing with the disease and our diagnosis. There is no right answer!

If we want to make a difference in the Media October is a good time to do it and it gives us just 4 months, less as in reality copy is finalised well in advance and October magazines will be in the newsagents late September.

Will post updates on this thread!

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Re: Sad & Frustrated at this disease

Hi Jenny, Kay and Jackson..I think it's probably easier to discuss off forum..especially if discussing other charities, companies..not in a ranty way at all but perhaps questionning..and I guess that would put BCC in a difficult position?
It's a really user friendly forum..I'm finding it so, I have chemo brain too and I'm no computer geek.
I also won't be chaining myself to railings..might abseil though. 😉
I also think some of us, many who've since died have been trying for years to change, challange perceptions here without many results and it might be worth trying a new approach.

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Re: Sad & Frustrated at this disease

I think I too must be missing the point. I would have thought the very openness of this thread/forum might actually help right some of the misconceptions about secondary bc???

Kay

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Re: Sad & Frustrated at this disease

As I won't be chaining myself to railings, I don't think I need sign up to a private forum. I am happy to discuss issues raised on this thread on this forum. Am I missing the point?

Jenny

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Re: Sad & Frustrated at this disease

Hi Jackson,
I think the thinking behind it could be..... if we are going to chain ourselves naked outside no 10 they don't need to be pre warned! Maybe?
I am useless on computers so I understand your concerns. I have just tried to sign up it was 2 clicks one on Fiona's name which took me to her profile and the second on the web address so I have signed up. I think.
I am off for treatment but will be back on here around 4 ish. I have no intentions of leaving BCC.
Hope everyone has a productive day even if you are only sleeping off the effects of treatment.
Love Debsxxx

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Re: Sad & Frustrated at this disease

I'm sorry but I don't understand why you feel the need for more privacy. I thought the aim was to go public and be heard. Is there something I'm missing? Personally, I think it is a real shame to move away from this forum, you could potentially miss a lot of people. Also, for those of us who haven't used other sites before, it's just one more thing to get to grips with while struggling with chemo brain, symtoms or side effects from drugs etc.

On the media/Pink October side, the Mail on Sunday You magazine always covers the whole breast cancer subject incredible badly. One year they had photos of "celebraties" showing glimpes of their bras!!! What on earth was the point of that?? I'd love to challenge them to do something much better.

The trouble is that so many times I have read articles in magazine or papers or seen pieces on television where the reporters get the facts wrong. The glaring mistakes are so obvious to anyone with any knowledge of this disease but not to "Joe public", who will, yet again, be fed incorrect information. I have no idea how this can be corrected.

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Re: Sad & Frustrated at this disease

Bumping this back up to the top for Fionam.

Please click on her name to go to her profile, where she has a link to the website she has created for us to discuss things in more depth in a more private arena....

Thanks
J xx

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Re: Sad & Frustrated at this disease

Thanks Fiona..will have a look at those threads today.
I read but don't post on bcmets..I envy their freedom of expression and self monitoring..it works..they've had some bust ups but it seems to bond them closer together...here when there have been heated debates, (not usually on the secondaries forum) a thread has been closed and the matter is left simmering on the back burner.

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Re: Sad & Frustrated at this disease

bcmets design has been revamped recently, and it is much easier to navigate than it used to be. I know the old format used to put some people off reading.

Jenny

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Re: Sad & Frustrated at this disease

Anyone who doesn't know...you might find the US site bcmets.org really interesting. Its the US site which Musa Meyer is involved with. The threads have a very different cultural flavour to UK stuff. I read regularly but don't post or I'd be spending even longer on the cancer computer than I do already.

Jane

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Re: Sad & Frustrated at this disease

Well the platform is set up it may take a little while to learn how to drive it, people seem to be finding the address, please check my profile as I am not allowed to post it here.

Anyone who has signed up the forum works pretty much like here so if you would like to start a thread go for it!

Have set up two groups at the moment - one to cover research issues and the other media issues, these seem to be most peoples priorities.

Will dig out any relevant documents that have been mentioned and attach these.

thanks

Fiona

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Re: Sad & Frustrated at this disease

As a follow on to Cathy's post - it might be useful to look into BCAction's website - the Think Before You Pink campaign looks interesting and appears to reflect some of the posts above.
ShelleyAnn

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Re: Sad & Frustrated at this disease

How about think beforeyou pink us UK, there is a think before you pink USA already. I don't think i have alot to offer at this stage as i am back to square 1 secondaries wise,

Cathyx

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Re: Sad & Frustrated at this disease

I'm still keen to push the research side to find out more about CRUKs stance on advanced cancer and palliative care. So, happy to tie in with Nicky and anyone else on this.
Also, I think it's time everyone recognised the differences between types of breast cancer- this will definitely impact on treatment and possibly, resistance to treatment.

In an ideal world, I would like to see us put together a document entitled something like, Living with Stage IV BC- looking from the inside out.
Something that details
-how we view the role of the media and cancer charities in presenting a picture of us.
-how we as individuals with our own course of disease, differ from the 'ideal' that is presented,
-the issues that cause us concerns, families, working etc
-how we view what is done on our behalf i.e. fundraising and awareness of secondary BC
-whether we consider that the money bequeathed to cancer research charities is well spent. Is there enough being done for advanced cancer, for us ladies (and others) who live with cancer as a 'chronic' disease? Is there enough research going on to determine why treatments fail and to develop longer-lasting therapies, that have lower resistance issues?

The radical national organisation sounds good! But, I have a concern and that is, we each have to look after ourselves. We each have a health battle and we mustn't take on anything that will one day make us look like martyrs to the cause. A network where we can each take a break as and when we need to from having to consider issues would be a good thing.

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Re: Sad & Frustrated at this disease

We don't want to alienate anyone but 'Think before you pink' would be a good place to start. Not to put people off retail therapy we all need that, but it gets so tacky and only the retailers make a profit. With a very small percentage going to any b.c. charity.
Love Debsxxx

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Re: Sad & Frustrated at this disease

I agree there seem to be two main areas to consider, they being (loosely) Patient Advocates for advanced breast cancer and Pink October. Too many fine points will probably blur the issues at this stage.

Jenny

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Re: Sad & Frustrated at this disease

I can ask Ian to set up a website for us it would have to wait until the weekend. If that would help or can one of you do it. As you know it is far to advanced for me.
love Debsxxx

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Re: Sad & Frustrated at this disease

Thanks Fiona..I've just sent you a PM
leadie..yes I think that's a very comprehensive list.
Do you all think we should have 2 or 3 main goals, aims..rather than try to spread ourselves too thinly?
For me these issues below would be key..but just my opinion so please feel free to disagree!

The way money is raised and how it's spent..which I guess would also cover the pinkness, tickled pink.
Real recognition of stage 3 and 4 bc..more support, patient advocats, a louder voice, which would all hopefully lead to a good, universal standard of palliative care, availability of drugs etc.

Nicky yes October would be a good time..the magazines are usually a month ahead so Pink October articles are in the mags and on the stands for September.
Belinda..x

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Re: Sad & Frustrated at this disease

Hi Nicky,

Have sent you some email addresses that may be of some use. I will be off climbing mountains or would do the research myself.

Jenny
x

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Re: Sad & Frustrated at this disease

Dear All, just read through some of the threads here and there are lots of ideas
Here are just some I picked out for discussion....
Cancer charities get large ammounts of money but yeild little in real terms.......
Secondary cancer is not really supported
loathing of tickled pink and pink campaigns
Gay community drives their own agendas and dictate terms to the NHS
Advanced cancer and end of life issues
Setting up a radical national organisation for patient advocates
Recognition for stage 4 women and end of life issues
These are just a few of the issues raised on this one thread!!!
I love JaneRA's idea of a radical national organization.
Comments please
Leadie

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Re: Sad & Frustrated at this disease

Hey leadie,
What a team of ladies!
A psychotherapist... no worries, I'm perfectly sensible, me, honest! Definitely need the tissues once in a while!

So, what do you think about the pink fluffy stuff and people with advanced BC? Can you think of anyway they could turn it around to make it seem more acceptable? Don't have to answer now but your insight would be really interesting.
Anne
Right, def off this website, there's work to be done...now!

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Re: Sad & Frustrated at this disease

Great ideas on this thread. Myself I'm a psychotherapist so not sure about useful skills here!! [Can provide tissues at crucial points though!!!} But have lots of energy and want to get involved
Leadie

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Re: Sad & Frustrated at this disease

Ooh being a bit of an idiot here, I can't get at nor can I get anywhere sensible with address for Breastcancercampaign. OOps just worked it out. it's breastcancercampaigndotorg not dotcom.
Looks really useful- thanks a lot msmolly!!
Oops! Back to work x

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Re: Sad & Frustrated at this disease

Hi Fiona

I am sorry that I have had to remove your link to this site as it is against our t's and c's of not allowing links to non public sites. Could I suggest that you use the private messaging to share this information?

Best wishes
Annabel