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The week of secondary breast cancer awareness day

11 REPLIES 11
aunico
Member

Re: The week of secondary breast cancer awareness day

I must say I was a little disappointed with the small numbers in the forums. I went on most days except Friday and often there was only me plus one other. Tuesday's usual chat was busier.

 

Not sure if the times of day affected things as people may have been busy or having treatment etc.

 

Vicky

Downbutnotout
Member

Re: The week of secondary breast cancer awareness day

Pleasant - I agree about too little focus and funding for us because we're incurable. I've been hoping that a clinical trial would become available for immunotherapy for breast cancer as it seems like it's showing promising results for various other cancers. After hearing about a trial recently opening for triple negative (my type) I was so disappointed to find out that it is only for first line treatment. It gave me that stomach churning feeling again. Whilst I'm delighted that they're looking to prevent recurrences for primary patients, my need is now. And maybe my thinking is way off but it strikes me that if people in our situation, already with metastases, were put on the trial it would be a good test of the effectiveness of new treatments?

X

Cress
Member

Re: The week of secondary breast cancer awareness day

Hello Pleasant,

 

I have visited the Second Hope site and it looks good - very clear and informative and it's honest without being miserable. The line up of Trustees definately gives the impression that they're not intending to fail. Great to have something dedicated to us, as so many members of the general public know someone in remission from primary and are under the misconception that breast cancer is now curable.

 

Thanks for reminding us to check it out x 

Pleasant1
Member

Re: The week of secondary breast cancer awareness day

Dear all

 

I'm currently under the chemo cosh so unable to converse. Instead I'm struggling to raise awareness…

 

Too little focus and funding is aimed at us because we're incurable. Those with primary still live in terrible fear of recurrence (I was there 2011-2015 and I'm not intending to knock anyone there). But there are many more primary sufferers with energy to raise awareness for the pink cause and they have some hope of recovery. We currently have no hope of long term survival and not long ago were sent away to make memory boxes.

 

PLEASE TAKE ACTION:

We really need to all get going on Twitter and other social media to raise awareness of Second Hope, the charity specifically set up by volunteers for us. Look on the Bone Mets thread where it was recently highlighted by JulieD: seondhope.org.uk

 

ONE THOUSAND OF US DIE EVERY MONTH:

Everyone please get on it and put as much spare energy as you can muster into raising Second Hope's profile and our cause. Only together can we can truly improve the situation for ourselves and others.

 

Big love to all.

 

X

Anna_BCC
Member

Re: The week of secondary breast cancer awareness day

 

Hi all

 

Live chat is open now until 11.30, come on in and join us.

 

Best wishes
Anna
Digital Community Officer

Anna_BCC
Member

Re: The week of secondary breast cancer awareness day

Hi Cress

 

We aim to activate within 2 days of recieving the request but the majority of the time it will be within a few hours.  You will recieve and email confirming your registration details.  I have recieved quite a few requests over night and yesterday afternoon, which will all be processed this morning.

 

If anyone else would like to join in live chat this evening or with any other live chats this week, do please follow the link to register.  It would be great to have you with us.  

 

Best wishes
Anna
Digital Community Officer

Cress
Member

Re: The week of secondary breast cancer awareness day

Registered for Chat today but will have to wait 2 days for activation, so was unable to join the discussion at 2:00pm. Wanted to ask if anyone had any ideas why I don't have any symptoms from my liver mets but have had sharp pain from my large primary tumour since yesterday. Anybody in the same boat? If so, what do you use? I've been taking Ibuprofen and Mefenamic Acid (Ponstan Forte).

 

Thanks,

 

Julia   

Anna_BCC
Member

Re: The week of secondary breast cancer awareness day

Morning everyone

 

I am really excited that today starts our week of secondary breast cancer live chat sessions.  Everyone who has a diagnoses of secondary breast cancer is welcome and I feel would gain a lot from participating.  If you are not already registered for the Live Chat service you can so quickly and easily using our online registration form .

 

Best wishes
Anna
Digital Community Officer

Tournesol
Member

Re: The week of secondary breast cancer awareness day

Hi,

I'm also working during the day (& can't do Tuesday evenings). It would be good to have another evening session if possible.

Chocolates
Member

Re: The week of secondary breast cancer awareness day

I can only make th evening one as I'm working - would you consider repeating the earlier sessions a bit later every day. xxx

aunico
Member

Re: The week of secondary breast cancer awareness day

Hi this sounds great. I'd love to join for all the sessions. I'm already signed up with Rumble talk, is that OK?

 

Vicky

Anna_BCC
Member

The week of secondary breast cancer awareness day

Dear All

 

Please join us for a series of daily Live Chat’s and talk with one of our nurses as well as others living with secondary breast cancer.  These sessions are open to everyone with a secondary breast cancer diagnosis.  These are exclusive opportunities to discuss anything and everything you wish about living with secondary breast cancer with others who are also living with that diagnosis.  Each day we will be here for you and offering the chance to ask questions and join in discussions about different topics.  Please post in this thread if you plan on joining us, or email moderator@breastcancercare.org.uk :

 

 

Monday  October 12th  2-3pm

Side effects & symptom control

 

Many treatments for secondary breast cancer have side effects that can affect your daily life to varying degrees. For example fatigue, pain and hot flushes, sore hands and feet. In this session we invite you to join our secondary breast care nurse Catherine, and to share ways that you have coped with any side effects and any symptoms you have experienced with other users, as well as find out what, and who, they have found helpful in managing these.

 

 

Tuesday October 13th 8.30-9.30pm

Open live chat session

 

An open session covering all topics related to secondary breast cancer The chat will be hosted by Rachel who is a member of our nursing team.

 

Wednesday October 14th 11-12am

Treatments and trials

 

There are a variety of different treatments for secondary breast cancer, as well as many clinical trials and research studies looking at new ways of treating the disease. This morning you can join our clinical director Emma to share in a discussion with others about any treatments and trials you and they may have experienced or have heard about.

 

 

Thursday October 15th 10.30-11.30 am

Isolation and uncertainty.

 

Having a diagnosis of secondary breast cancer can feel isolating.  Sharing worries and fears with others who are feeling the same way can help you feel less alone and more in control. Today join Chloe in a safe space where you can talk with others about living with uncertainty, and share techniques and strategies that you’ve found useful or discuss worries you may have. 

 

Friday October 16th 1-2 pm

Living day to day with secondary breast cancer

 

A diagnosis of secondary breast cancer affects every part of your life. Ideas on practical support and tips in dealing with day to day issues are really helpful to share. Whether it’s benefits, childcare, transport to hospital, how others help you out (or not!)  or anything that might help make your day easier BCC nurse Jane will be here to join in the chat.

 

Best wishes
Anna
Digital Community Officer