Follow @BCCWW and use #BCCWW on twitter
This is a twitter chat, held every Tuesday night 9 – 10pm GMT follow @BCCWW and then search #BCCWW and you will see members and tweeters. Topics can vary, anyone can join in, everyone is welcome.
One of the 5 founder members – Alice – wrote this blog about why we set the group up – here is the original link to her blog https://alicewhatsthematter.com/2014/12/09/im-still-looking-up/
The story of #bccww by Alice, what’s the matter? @AliceWTMatter
Chatting with some of my regular Twitter #bcsisters one Sunday, we got talking about support groups and wanted to try something new – a regular discussion on Twitter – but at a time that suited us in the UK / Europe. We knew there was an US chat on #bcsm, but as that runs at 1am UK time it is a time commitment we don’t often get the chance to make! So – we decided to register the hashtag #bccww.
We have a Twitter account @bccww which is now a TweetChat every Tuesday night, 9pm UK time. I’m so proud to tell you that we have now been running it every week for about 6 months. It’s completely to the credit of the regular loyal band of people involved running the account, or coming up with new ideas in the background, or leading the chat and being more vocal on it. The same hashtag #bccww is also used throughout the week to flag up useful content to the group that follows us.
We chat each Tuesday, 9-10pm GMT (UK time), 4-5pm EST. Come and say hi if you get the chance… !!
If you already have a Twitter login, all you need to do is get on Twitter and post with the #bccww hashtag and you’ll be spotted (and most likely re-tweeted).
There is a total mixture of people in a variety of circumstances who get involved in the chats. Some just diagnosed, others in the midst of treatments like chemo or radiotherapy, some like me who are picking up the pieces and trying to make sense of what happened to them. Some are considering their options for next steps on more surgery, some have been diagnosed with recurrences or metastatic cancer. That last group is unfortunately larger than you think. No matter who you are, it’s certainly good to be better informed and demanding with your Doc than fobbed-off and undiagnosed!
Who are the founders of #bccww?
Julia – @Hellboy8700
Rachel Taylor Manning – @rachelmanning11
Diagnosed Feb 2013 after finding a lump. The breast clinic found the second one with an ultrasound. Lumps both 18mm Grade 3, removed by wide local excision – due to dense breast tissue, a mammogram hadn’t shown them. Then 2nd op to remove 19 lymph nodes as one tumour was a lymph node even though the sentinel node biopsy was ok! Chemo FEC T May to August. 21 rads September/October. Now on Tamoxifen.
#bccww is so important because we offer support and understanding to others and we are all linked by breast cancer.
Jo Taylor – @abcdiagnosis
Diagnosed with primary breast cancer 2007 & secondary (or advanced or metastatic – Stage IV) breast cancer Feb 2014.
Creator of After Breast Cancer Diagnosis web site for information on reconstructions, surgeons, hospitals, cancer networks, diet & exercise.
Provides up-to-date world wide news on breast cancer. Passionate advocate for breast cancer. Likes to cycle and run. Tweets a lot.
Yvonne Newbold – @Yvonnenewbold
I’m the mother of three young people, all with disabilities, and I also have Stage IV Breast Cancer, which means it’s incurable, but I’m having long-term treatment and I’m currently doing reasonably well.
I’ve written a book, published in the Summer of 2014, called “The Special Parent’s Handbook”, a hands-on, practical parenting manual for parents of children who are different.
Alice WhatsTheMatter (A.K.A Jools) – @AliceWTMatter
Diagnosed 2012, with my first chemo treatment the same week as the funeral of a friend who died of breast cancer. Had 8 cycles of FEC-T chemo, and then requested a genetic test – a BRCA2 mutation diagnosed in November 2012. As a result, I took the decision to have a double mastectomy and reconstruction (Becker expanders) and had the operation the day after leaving a job of 13 years. After a year out to travel, in 2014 I was proud to help form #bccww.
Back at work full time, on Tamoxifen, considering removing my ovaries, and planning more adventures.
It’s nice to have a place to go where everyone is welcoming and inclusive. We all say that we appreciate that opportunity to talk to people who know a bit of what it’s like for us, who can sympathize with our situation when we have a bad day, who are willing to listen to all of our concerns, and who cheer when we have good news to share.
The people on the chat and indeed on Twitter and in touch with each other all the time, are a real mixture. Young and old. Younger than you would ever imagine, sadly.
If you would like to get involved, talk to us at #bccww on Tuesdays at 9pm UK time. We’d love to hear from you.