So what is happening on Metastatic Breast Cancer Day - 13 October 2013?

[Tinkerbelle]

Hello All,

I think the message about research may be making some headway.

This is a interesting read about this issue:

http://www.healthline.com/health/breast-cancer/turn-from-awareness-to-researchhttp://www.healthline....

Tink x

[mrsblue]

Ah yes, I remember reading that blog last year. 

It includes the email address

secondary@breastcancercare.org.uk

which should be much more prominent on the BCC website.

[Tinkerbelle]

Well,

Tomorrow is the day - I'd just like to post part of a comment that Vivki made about an article in the Telegraph over a year ago which I feel sums up how I would like to see the issue of mbc be regarded - the emphasis is mine:

'They claim that Breast Cancer Awareness Month is all about awareness of breast cancer, but until they put us at the centre and everyone knows about Metastatic Breast Cancer, the fact that men also get breast cancer and it affects young people as well then they are not aware.'

Below is the link to the article - Vicki's comment is at the bottom.

http://blogs.telegraph.co.uk/news/judithpotts/100237691/breast-cancer-awareness-month-is-the-message...

Tink x

[mrsblue]

Thanks so much, Tinkerbelle 🙂 Best article on sbc I've read in Vita (yes I do read it when I can, or to be more accurate I look at the, sometimes token, "secondary" article first).

I posted a positive comment in response to Della's blog article, but I'm not sure if it got through , the only buttons were Save or Preview - no "Submit" and no message "Your comment is awaiting moderation".

[Bevlaar]

Just jumping in quickly to say good luck for tuesday chocolates 😉 hope it will give good results.
Its such an anxious time waiting i agree. Will be keeping everything crossed for you. Love bev xxxx

[Chocolates]

Afternoon ladies - hope everyone is doing ok. Just booked my scan for Tuesday afternoon - scanxiety has already set in. Can't wait for that to be over.
Absolute chaos here - friends of kids over and just no where to hide. It's great, I love a full house but a moment of peace would also be nice - I know make up my mind.
Interesting to read about retirement. I'm doing ok at the mo - the fatigue is hard though but for me working is better so far. Of course if scan results say otherwise I'll have to think again. I want to have a balance but I def know I don't want to work up until my time is up. I'd like to enjoy some quality time, free from work stress and just with family and friends. Fingers crossed the results next week don't bring that all forward.

Right - cooking and washing to do as well as shout about loudness of music and not playing football upstairs. Oh the joys.

Stay well everyone. Dani - hope you're ok

Huge hugs
Hxxx

Just realised I've posted in the wrong thread. Sorry ladies xxx

[belinda]

Thank you for highlighting Della's article Tink, I don't usually read Vita so would have missed this.
And thank you Della for telling it exactly how it is.
Well worth a read. X

[Tinkerbelle]

Hi All,

Thanks to the ladies who are attending in London on the 15th for those of us who can't and thanks to BCC for putting up the details of how to contact our MPs.

I have just seen the article by Della Walker for Vita Magazine on SBC - it's a really good article and expresses what many of us feel.

http://www.breastcancercare.org.uk/news/blog/sidelines-secondary-breast-cancer

Tink x

[HelenL_BCC]

Hello all,

We’re looking forward to welcoming you to our special Secondary Breast Cancer Awareness Day Live Chat session on Monday 13 October. 

The session will be facilitated by Anna, our Forum Coordinator, and Rachel, a member of our Clinical team.

The online chat takes place from 7.30 – 8.30pm and is open to all with a secondary breast cancer diagnosis.

In addition to sharing your experiences of pain management, it’s also an opportunity to talk freely about anything you wish to discuss. We’re focussing on the hidden effects of breast cancer during Breast Cancer Awareness Month, and would welcome your thoughts and experiences on this topic too.

We’ll be sure to post again on the day to remind everyone that the session is taking place.

With best wishes,

Helen

PS: If you would like to take part, please email moderator@breastcancercare.org.uk and mark the email as Special Live Chat in the subject heading. 

PPS: If you don't already have one, you can set up a Live Chat account here:http://www.breastcancercare.org.uk/user/register Unfortunately, your Forum login won’t work for Live Chat (it’s a different system!)

[Anna_BCC]

Hi Everyone

As promised, we just wanted to keep you updated on our plans for Secondary Breast Cancer Awareness Day. A special Live Chat is planned for Monday 13 October 7.30-8.30pm.  The planned topic for sharing and discussion is about pain management: How do you manage your pain? Do you feel you are receiving all the help you need to manage your pain? What else can be done? We hope that this time together will enable people to share their own experiences, both good and challenging, as well as what has worked for you and what hasn’t. If you would like to take part, please email moderator@breastcancercare.org.uk and mark the email as Special Live Chat in the subject heading.  Also if you have any questions you would like answers to, please let us know ahead of time so that we can do our best to provide the answers.

I look forward to meeting you there.

Best wishes

Anna

Forum Coordinator

[Anna_BCC]

Hi everyone

Thank you to those who have been in touch about attending the Secondary Breast Cancer Awareness Day event in Parliament. We now have six volunteers who are going to come and speak to MPs and make sure that secondary breast cancer is on their agenda.

A couple of people have mentioned about not being able to attend but wanting to invite their MP to go. Thank you very much for offering to do this. I have put together the information you need to do this.

If you don’t know who your MP is or how to contact to them, you can do it through www.writetothem.com and entering your postcode. You then just click on the name of your MP and write the message. Below is a suggestion of what you might like to say. Please feel free to edit it and, if you are happy to do so, include some of your own experience so that it adds a personal touch.

Dear [MP name]

As my MP, I wanted to make sure you are aware of an event that Breast Cancer Care are organising in the hope that you may be able to attend.

Secondary Breast Cancer Awareness Day

Drop-in session and photocall

Hosted by Steve Brine MP, co-chair of the All Party Parliamentary Group on Breast Cancer

Wednesday 15 October, 5-7pm

Room M, Portcullis House

Secondary breast cancer is where breast cancer cells spread from the breast to other parts of the body, such as the liver, bones and brain. While secondary breast cancer is incurable, with the right care and support women can live with disease for a number of years. However, not all women are receiving the care they need to manage the symptoms of secondary breast cancer.

This is an issue that is really important to me because [include some of your own experience here]. Breast Cancer Care’s event will be an excellent opportunity to find out more how support for people living with secondary breast cancer can be improved.

Please feel free to attend at any time between 5pm and 7pm on Wednesday 15 October in Room M, Portcullis House. For more information and to RSVP, please contact Andy Glyde, Public Affairs and Campaigns Manager at Breast Cancer Care on andy.glyde@breastcancercare.org.uk or call 0207 960 3484.

I hope you will be able to attend.

Yours sincerely

[Name and address]

If you do write to your MP to invite them, could you please drop me an email on andy.glyde@breastcancercare.org.uk so I can make a note of it please? And if you hear anything back from them, feel free to forward the message onto me.

Thank you for your help. It should mean we get as many MPs as possible to come and find more about secondary breast cancer.

Andy Glyde

Public Affairs and Campaigns Manager

[Moneck]

 Chocolates,

I have been 'conversing' with Andy via emails - I am invited though he is aware that I am awaiting a CT scan before restarting Cape.

I look forward to meeting up with you,

Monica

[Chocolates]

Moneck that sounds amazing - you're truly a talented woman. I'm glad it gives you so much pleasure. I've had another email today from Andy - have you got yours? Really looking forward to meeting you - although a big nervous about it all. Huge hugs xxx

[Moneck]

Chocolates, no I haven't heard yet.

I am set for my activity on 13th Oct. - I attend 'Knit & Natter' sessions at a local store (they have 9 shops across SE England) they sell yarns, materials, craft & gift items plus haberdashery, very enjoyable & always a lot of laughter. A few months ago they celebrated National Stitch Day with members of the local Embroiderer's Guild combined with a K & N.......it got me thinking & at end of day I asked if they were doing anything in Oct for BCAM. They offered the week beginning 13th, at that time I was unaware of its significance!!

I consulted members of our local independent BCSG (2 ladies have died this year from SBC) & we have duly booked in on 13th as 'Make It In Pink' -  people are invited to join in & knit, crochet, sew, do beadwork, papercraft etc.

We will have our Group leaflets available & flyers advertising our 'Pink Tombola' at a local bazaar in Nov. I will be there and ready to inform anyone who asks as to my secondary status etc. I've not sold out to pink & fluffy but using it to get the message across.

Monica

[Chocolates]

Moneck I'm going also. Had an email yesterday. Have you heard?

[Moneck]

I have applied and waiting to see if I have been selected.

[minhay65]

Totally agree

[minhay65]

Why is only one day devoted to secondary breast cancer? It makes me angry that people believe breast cancer can be cured, the reality is very different....we need a cure, not pink crap!

[EJ81]

Likewise. I can't go this time but would be interested in future events.

[JulieD]

Would like to have gone to this but can't make it but maybe future meetings?

[Anna_BCC]

Hi everyone

We are looking for two more people to attend our event in Parliament on Wednesday 15 October to mark Secondary Breast Cancer Awareness Day. We are running a drop-in session for MPs where we want them to come and meet with people living with secondary breast cancer and understand more about the issues they face. We have two spaces for volunteers to join us. It will be a relaxed event with tea and cakes and a great opportunity to raise awareness with MPs about secondary breast cancer.

The event is taking place at 5-7pm in Westminster. We are happy to cover reasonable travel expenses. If you think you might be interested, please contact Andy Glyde on 0207 960 3484 or andy.glyde@breastcancercare.org.uk.

For those who cannot attend, you could contact your MP and ask them to attend the event. We will post details about how to do this and what to say shortly.

Andy Glyde

Public Affairs and Campaigns Manager

[EJ81]

That's really good news Bev. I'm so glad the chest pain wasn't anything sinister. Xxx 

[Bevlaar]

Just an aside ladies.. .saw Onc at clinic yesterday and had a thorough examination. The chest pain is muscular and gave me ibuprofen and cocodamol. Already the pain has almost gone!
Also my tumour markers are down from 96 to 83 😀
Love bev xxx

[ladygrey]

Very well said ladies.  I've been reading and reading about breast cancer only to realise that there is a very great risk of secondary cancer and that's something I'm getting my head round.  This little beggar is never going to leave our lives one way or another. Love Ade xx

[Moneck]

Thanks Helen BCC I have contacted Andy.

Monica

[EJ81]

My school used to do the whole pink and fluffy thing and I used to join in with gusto! Wish I knew then what I know now. They are starting it again this year - for me! I feel really weird about it as while they all know I have breast cancer (I went on sick leave only days after finding out and, at the time, felt OK with people knowing), only a handful of people know it has spread.

I know they all think they are doing a good thing and but it just doesn't feel like it has anything to do with me. I don't want to burst their bubble but I feel like this is thje problem we all face. People don't want to know about secondaries because it ruins that pink fuzzy feeling. Would it be wrong to ask them to write 'to fund research into Mets/secondaries' on the cheque?!!! Perhaps that could be our way in? Enjoy your pink high, celebrate the survivors, now give the money where its needed!

Sorry moan over - had allergic reaction to new chemo yesterday which had to be stopped so now I'm full of unnecessary steroids and wide awake since 5!

Ellie xxx

[HelenL_BCC]

Hi all (and in reply to your post, Moneck),

The event in Parliament will take place from 5-7pm on the 15th October in Westminster.

If you are interested in attending, or have any questions about it, please contact Andy Glyde, Public Affairs and Campaigns Manager on 0207 960 3484 or by email at andy.glyde@breastcancercare.org.uk. Travel expenses will be covered.

Please note that due to the size of the room we have available to us, spaces are limited. However, if you are not able to attend this event, don't worry. We have plans to provide more opportunities to raise the issues around secondary breast cancer to MPs in the near future.

[mrsblue]

Bevlaar, you might have a rib fracture.  I've had these this year, can happen to anyone, coughing etc. can cause it, but if bones are affected by bc this can be relevant.  Classic symptom is pain when breathing in.  Not nice... take ages to heal but they should do eventually.  If in doubt ask your onc.  I don't have lung mets so maybe best to mention to your BCN or onc.

[2catlady]

Thanks Anna bcc xx

[Anna_BCC]

Hi Everyone

This is great that you feel able to share your thoughts and feelings here, please keep going.

If you want to keep this thread at the top of the board, please click on the thread options tab which will drop down a list of actions, one of which is, make this thread sticky.  If you click on that it will stay at the top of the board whenever you log on.  Another option would be to bookmark the thread, then when you want to read the thread clink on the tab, Bookmarks, which is in the top right hand corner of your screen, next to Friends, then you can just click on the relevant bookmark you have saved and hey presto!  Straight onto the thread.

Best wishes

Anna

[2catlady]

Hi,ladies ,I know what you mean. There is far too much pink fluff and I've beaten it. Well if that's the case why is it every week new ladies are joining us. If anything the SBC section should be tiny and no one using it . all the detect it early rubbish is not working. Funding needs to go into mets and treatments and not early detection as clearly it doesn't work!
Oh I'm on a rant roll today xxx

[2catlady]

Bumping for Ethel xx

[bertie1]

Hi agree with you all,when I had my primary 15 years ago I was told unlikeli to come back as it was only grade 1.how wrong they were 12 years later it came back as recurrence and this year secondaries .I did it all race for life ,involved with tickled pink as I worked for asda.We ladies who have metastatic disease have as much right to new treatments and funding for these treatments as we are not on our last legs and can live with this as a chronic illness providing we get the right support
Kaye xx

[rosie53]

Hey can i join the rant please??
I to get fed up of seeing all the "we can beat cancer" ads and like others have said i am not heartless or nasty but i am getting increasingly bitter and angry with regards to this disease and the support and understanding we (don't) get!!! I went along to a Macmillan coffee morning at my hospital and all the ladies were lovely but they had all "beaten" it (primary) which don't get me wrong is great but i still felt really isolated and if anything more alone!!
please somebody out there just give us mets ladies a thought : - )
love and hugs Janette x
ps would love to meet up with any ladies living in the Manchester area????

[2catlady]

Yes,Ellie,it's shocking that so many primary ladies don't know what mets are! No wonder us SBC ladies feel neglected . An ex BCN who was on onc ward at old hospital admitted that all the support goes to primary and there's nothing for secondary BC! Oh too right!! I feel as we are just written off once we are not the pink fluffy " I survived" lot.
Rant over xxxx

[Bevlaar]

Yes Ellie...october is fast approaching and that means Tickled pink campaign along with all the associated "pink" tv ads, pink clothing, pink fluffy everything! When i had primary bc i supported the asda Tickled Pink campaign. I was a trial and tester for their post surgery range of underwear and swimwear and had visits from their marketing managers to discuss new ranges. As a thank you they invited me to london one weekend for a photo shoot with Zoe Salmon for a feature in the oct asda mag.
I had hair done by Andrew Barton and it was a great day....i felt priveleged and grateful that i was a bc survivor! You can still google me and read the story i think. It was also featured in The Mirror.
But things have changed now... i actually watch these tv ads and look at magazine articles and cringe.
It all looks so nicey nicey....also all these ladies in the race for life ads that have "beaten" cancer....hmmm.
I was one of these a year ago....didnt have a clue that i would be in the secondary group soon!
Pink campaigns give the impression that we can all be cured and i feel cheated and angry when i see these ads now....i dont want to feel like this and its not in my nature to be bitter. ..but i do feel very let down.
Sorry if ive upset anyone but cant help feeling like this now.
Hope you all have a good day. I'm off for my next cycle of cape.
Been having pain since sunday inside chest above diaphragm and ribcage where mass is. Bit worried... its like a stitch. My ct scan end August showed no changes since may so should i be worried about this pain? I can feel it each time i breathe in and out.
Has anyone else had this with lung mets?
Love bev xxx

[EJ81]

Helen I'm with you - until it happened to me I thought breast cancer was 'one of the better ones' to put it crudely, because it was curable!

There definitely needs to be better understanding and awareness of Mets. A lot of people think it means you've been given months to live purely because they've never heard of it! When I rang my health insurance to tell them I'd got secondary BC the lady on the phone asked 'secondary to what?' !!!

On a side note, is anyone else getting a bit fed up with the 'cancer we're coming to get you' ads for race for life? I was stuck opposite one on the bus the other day thinking why would anyone want to get it?! I know that isn't how they're meant but still. Ellie

[Chocolates]

BCC Helen - can we turn up to the parliament thing or is it invite only.  i might be able to make it and would like to know what is happening.

Many thanks,

Heather

---

[2catlady]

Hi,janette,you are certainly not offending anyone. I was like you I didn't have a clue what mets were when I got double whammy diagnosis. I thought BC could be cured and it didn't spread!! I got no information from hospital to help me understand . If it wasn't for this site and the lovely ladies on here I'd be totally in the dark googling scary sites with out of date information .
Hugs,Helen xxxxx

[rosie53]

Hi ladies, just found this thread and read clippets from each.
Can't bring myself to read much more as the reality of this disease scares the s--t out of me so for now i am happy to "bury my head in the sand" its 6 months now since i got my bone mets dx and i still feel like i eat, drink and sleep it!!! I can honestly say i had never even heard of it before my dx, there should be more education given to ladies who get a primary dx, i was just told to keep checking myself for lumps or any changes to my boobs!!!
Now my life just seems to revolve around blood tests, scans and injection. I live in hope that we are going to get a miracle very soon!!
hope iv not offended anyone love an hugs Janette x x

[belinda]

Oh good idea, bump. Hope cap is working well for you Mrs Blue. X

[mrsblue]

Bump, to keep this thread on the 1st page... there is only room for 5 threads in Latest Posts when I click on the "I have secondary breast cancer" box, I find it a bit annoying when all 5 are postings on the same (usually Bone Mets) thread!

[mrsblue]

Hi Helen BCC,

Thanks for your response.  Online surveys are good - better than the does-she-take-sugar approach that was adopted by BCC one year, there was a focus on "body image" and obviously nobody had thought to ask any of us mets ladies for our input!!

Some years I have posted a rant, other years I have ignored the "Secondaries" awareness day (it has been known to fall on our wedding anniversary date) but it seems we are going round in circles trying to tackle the impossible... how to make people realise that breast cancer does kill... while at the same time, encouraging those newly/recently diagnosed with mets, that it is possible to live a meaningful life with mets despite being on treatment for the remainder of our lives.

(Thanks Julie 🙂 I've had ups and downs but am still around, on capecitabine for 2nd time!)

The only solution I can think of is for a separate charity (or campaigning organisation) run BY those with metastatic bc, with support from other bc patients and charity-sector professionals.  I do know that BCC was originally set up to support those with primary bc only... long ago when there were few if any treatments available for mets.

[vercors]

Monica,

I will PM you a copy of the email I received today inviting me to the event. 

All, 

This is one of the few threads I am following on BCC nowadays. A lot of things rang a bell in what have been saved. Not wanting to be the devil's advocate but I stayed away from the secondaries thread when I was originally diagnosed. I needed to concentrate on myself first. Only once my treatment finished was I capable of reading anything on MBC, then four years later I joined the party. I am not blaming ladies on this site, because we are all scared. Playing with statistics is what gets me mad. Figures being branded without their full meaning. 

XX

[Moneck]

How do we apply for the event at Parliament on 15th October?

I can get to London, unless I get hospital appt on that day.

Monica

[HelenL_BCC]

Dear all,

Thank you for re-energising this thread, it’s good to hear your views and voices. Further to our recent thread on Breast Cancer Awareness Month and Secondary Breast Cancer Awareness Day more specifically, we’re glad to be able to share with you more information about our plans on and around Secondary Breast Cancer Awareness Day. 

On the day, we’ll be publishing the data collected from our online survey on pain. We’ve had a phenomenal response to the survey: over 200 people with secondary breast cancer responded. We’ll use this data to raise awareness of the fact that not all women with secondary breast cancer receive the care and support they need to manage the symptoms of secondary breast cancer and that many live in significant amounts of pain on a daily basis. 

We’ll also be launching a petition for everybody to get behind and sign, calling on the UK government to ensure that secondary breast cancer is placed high on their agenda. 

Finally, on Wednesday 15 October, we’ll be holding an event in Parliament which will give women living with secondary breast cancer an opportunity to tell MPs and other parliamentarians what the reality of living with secondary breast cancer is like.

Please do continue to watch this space. We'll do our best to keep you updated as and when further events and information develops.

Best wishes,

Helen 

[helen44]

Hi All,

Just read through the posts of last few days on the SBC/MBC awareness day and I totally agree with everything you have all said. Sometimes the truth hurts and we need to make society aware of it - secondaries kill, no two ways about it! I feel like a second class citizen with mets - people don't understand it and certainly not primary ladies when it is so important that they do. I was diagnosed with primary & bone mets at the same time in Dec 2012 & pretty much everything I have learnt about mbc has come from this forum. I have a lovely bcn but I find I have to contact her all the time - it is not the other way round. We are definitely 'forgotten'...

I registered as a media volunteer when first diagnosed & BCC interviewed me for a piece in their volunteers magazine about mbc - not been asked since & would be very agreeable about telling the pink fluffy world about mets - BCC get in contact with some of us & let's try to move forward.

Helen x

[Stillhere]

Interesting post, I think the fact that statistics/medics/media tend to mention a "cure" as occurring 5/10 years after first diagnosis doesn't help the SBC camp. No one is "cured" ever. My first recurrence happened 14 years later, as have many others, so wake up primary ladies! I think it's so unhelpful to feel that you are on the scrap heap with incurable BC, I really feel for those ladies that have horrible oncs! Luckily I've always been made to feel that I matter.

[Bevlaar]

Hi lovely ladies. Hmm mets is still such a taboo word. We dont die of breast cancer...we die of metastatic bc. We need more money for research into a cure for stage 4 most definitely!!
I agree there is too much emphasis on Pink Day fluffiness. ...whoopee i thought i was a bc survivor and used to count my blessings that i wasn't one of those ladies on the Secondaries thread on this forum!
I read the posts once or twice but i too used to be superstitious about clicking on it and used to feel so sorry for these (mostly very young) ladies who knew they were going to die.
Well now i am one of those ladies and i dont want to die anytime soon. I am so scared of how it will be at the end. I cant bear to think how heartbreaking it will be for my children watching me die.

For us in Wales..i personally feel we are short changed when it comes to funding for new drugs. Its all well and good David Cameron stating years ago that everyone with advanced cancer will have access to all new drugs that become available.....but failed to say that you have to live in England!
Yes, we in wales have free prescriptions but this system is so abused when some people are still getting "over the counter" drugs on prescription. As we all know, you can buy most things now at local supermarket. ...ibuprofen tabs, gels, hayfever remedies, etc but a lot of people still get these on prescription.
Welsh Assembly.....charge us a reasonable amount for prescriptions and pump the money instead into funding us the much needed life-saving drugs we so need. Although i do feel that people with chronic illness like cancer, diabetes etc should have free or at least pay a minimal charge for prescriptions.
Everyone in the whole of the UK should be treated equally when it comes to life saving cancer drugs. Why should we in wales be short changed??
I wish everyone good luck with their treatments and sending love and hugz to you all hoping we will go on for many years yet xxxxxxxxxx 💖

[Jo_BCC]

Oh dear Flo, I can understand why you feel so upset and am sorry that you didn't get the support you were looking for and needing from these forums.  I hope you now find that support now you have come back.

If you need to talk to someone in person and in confidence please don't hesitate to call the helpline, the staff are here to support you through this both practically and emotionally.  0808 800 6000

Take care,

Jo, Moderator