I’m still looking up

A little while back I wrote about the power of being able to discuss with like-minded people how we feel about our diagnosis and treatment. It truly is a life-saver for your sanity because there are so many strange and new things to think about, find out about and decide on, both before during and after treatment – and it’s quite daunting or overwhelming. You ask yourself, “Should I be worrying about all this, and if I should, who can I talk to about it?”

Alongside all of this information are the league of breast cancer bloggers out there. A lot of whom start their blog explaining how it helped them process the shock and how they collected various resources to help themselves and others. Only this week, one of the ladies online who I chat to – Marie Ennis O’Connor – @JBBC published a list of useful bloggers on listly – which I encourage you to look at, too. The majority of these bloggers have been blogging for some time and are also relatively easy to find and chat to on at least one of Twitter, Facebook and Google+.

In addition, some of the most useful online resources I’ve read and continue to refer to, are:

• breastcancercare.org.uk
• Macmillan
• Cancer.org
• ABCDiagnosis.co.uk
• FORCE – Facing Our Risk of Cancer, Empowered
• Uptodate.com
• http://source.macmillan.org.uk/  – quotes from the public, sharing their tips and experiences

The above list is reasonably easy to read and understand, because those sites have made it their mission to translate and present information in the most friendly way. It would be good if the information given by all of our medical professionals was more consistent in both its level of detail and its ease of being understood. Yes – these guys are the experts and we should definitely take their advice, but we shouldn’t do it without informed consent. And being informed is hard work.

Over the time since I was diagnosed with breast cancer, I have found an absolute mountain of factual, scientific information out there online… Some more digestible than others.

I’m lucky – I was pretty academic when I was at school so I don’t get too daunted by having to make sense out of medical journals and so on, and doing lots of research to challenge and re-challenge the information that is in front of me. But… the majority of the population would both hate having to read most of those medical reports and journals, and would probably not have the same amount of time to dedicate to deciphering it. So what should they do?

It’s important to have access to information but it would also be good to have some backup from a buddy or two when we’re navigating the various discussions we need to have with medical professionals and making sense of all the information being put in front of us. Also – we’ve all been on these websites or read pamphlets of information given to us by Doctors, and they are most definitely helpful, but they are also just pages of science and medicine.

They don’t feel, they don’t recognize and empathize. That’s the job of your friends, who you can really let your feelings out to. It’s also the job of people who are your online buddies, people in the same boat who are going through or have gone through the same thing as you and will be able to understand and talk to you about your experience in a way that perhaps your other friends and family cannot, if they haven’t been through it.

As I said in my earlier post: “Luckily these days, the information and science is available in greater quality and measure than ever before, and the internet grants us immediate access to a lot of it. That allows us to make much more informed decisions. What it doesn’t do, however, is take all the emotion out of the situation. That’s where seeking out a support mechanism comes in. ”

It’s actually also more important than that. These online friends who support you through your experience will probably be the key to a “Eureka!” moment for you at least once, if not many times.

They might be medical professionals, or they may just have enough knowledge to tell you what you need to ask a medical professional. They will be the ones that will give you access to information that you didn’t even realise that you needed! There will be, at least once in those discussions, a moment where you think “Oh, now that makes more sense to me, I wish I had known that sooner!”

I’ve had so many of those moments in the last year or so, thanks mostly to discussions I had on Twitter and Facebook. Some people find Forums really helpful, others prefer to use the various social media sites available to them. I chose social. It’s public, but it’s there pretty much 24-7 and if you want to talk, there’ll be someone awake somewhere in the world who you can either chat with or leave a message for.

The story of #bccww

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 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.

Follow @bccww

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.

“When I look into your eyes,
It’s like watching the night sky
or a beautiful sunrise,
There’s so much they hold.

And just like them old stars,
I see that you’ve come so far,
to be right where you are –
How old is your soul?

I won’t give up on us,
even if the skies get rough.
I’m giving you all my love,
I’m still looking up”

Jason Mraz – lyrics from “I won’t give up”