Update Tuesday 17 September 2019
Welcome to our fortnightly update and welcome to all our new members who have joined our online community over the last few weeks. I do hope that you are settling in and finding your way around the community. Don’t forget to check out the Community Info section on the website, which contains information on navigating the online community and our community guidelines.
A gentle reminder to click on the pink New Discussion tab/button when commencing a new discussion thread. I have noticed that there have been a few questions posted in the Activity section, which means that the thread is not in the main discussion forum, and may not be seen by other members. If you are getting stuck don’t hesitate to contact the moderation team @Giovanna_BCNA, @Riki_BCNA, @Rosie_BCNA or @Marianne_BCNA.
Here are two threads that are great examples of the support our wonderful community provides to new members struggling with the early days of diagnosis, waiting for results and making decisions.
This thread was commenced by @Caroline71 who was diagnosed 2 days ago with stage 3 invasive breast cancer that had spread to her lymph nodes and muscles in her chest. She described feeling devastated and waiting to see medical oncologist and very worried that the cancer has spread.
- @Sister ‘This time after diagnosis but before heading into treatment is really really hard. I spent that time veering from fog to absolute despair. Somehow, once you start treatment, the anxiety while not going away, does tend to calm a bit for most people. I'm guessing that you know who you have been referred to - give them a call and find out your appointment time - the staff should be used to people who are anxious.
- @Caroline71 ‘ really helps to hear from others who have been through it’ and ‘I am so happy to have found this wonderful support network and know there is someone there to talk to.’
Great news @Caroline71 to hear that your scans were clear. Wishing you all the very best with your treatment.
This thread was commenced by @Karenp23 who sourced two opinions from different doctors, only to be told by both that, she needs a total mastectomy, that this is the only option for her. ‘Why me….I want to run and hide.’
@Strongtogether ‘Karen, don't you lose hope. It's not nice. It’s not your fault. You're in shock. This will change, this will pass and you will survive. There’s not much I can add that hasn't been brought up already. Just know that you are not alone.’
@Karenp23 ‘So blessed to have such a big support network on here it’s been great to read other people’s journeys and the inspiration that it will give me to move forward.’ Wishing you all the best with your surgery.
Don’t forget that our My Journey online tool has lots of information to help you understand your diagnosis and treatment options to help you with decisions making. In fact, it has a range of evidence-based information, stories from others diagnosed with breast cancer, podcasts and webinars to help you regardless of where you are at with your treatment and beyond. You can sign up at myjourney.org.au
Thread commenced by @Sister who had the opportunity to take a well-earned break at an Otis retreat in South Australia. So great To hear that you had a very relaxing weekend @Sister.
BCNA’s progress on our top five priorities for change in 2019
Following consultations and research with our members, BCNA identified the following five priorities for change in 2019.Faster access to new and innovative breast cancer treatments Reducing the financial burden of a breast cancer diagnosis Improved access to specialised breast cancer nurses or cancer care coordinators for people with metastatic disease Better management of lymphoedema Improved access to breast reconstruction
We have been working hard this year to achieve these priorities. You can read our about our progress here
Host a get together with the girls, your colleagues or Pink Sports day.
Host a Get together with the girls to help support women and men affected by breast cancer. Every day 53 Australians hear the news they have breast cancer. It takes a village to help support them on their breast cancer journey and BCNA is at the heart of that community.You can help support the work BCNA does by hosting a ‘"Get together with the Girls, Coffee with Colleagues or hosting a Pink Sports Day" raising much needed funds. The links to register are below:
Reminder - Gold Coast Together Towards Tomorrow Survivorship Conference
Not long now until our Queensland conference. We have a fabulous program and it will be a great opportunity to meet others and make new friends. For more information or to register to attend the conference click here
This week’s reflective quote
“I spend an insane amount of time wondering if I’m doing it right. At some point I just remind myself that I’m doing my best. That is enough.”
Have a great week everyone, safe travels
Regards Giovanna and the moderation team