Accepting your New Self
I could have put this discussion in the breast reconstruction group but thought it was better in general discussion. I'm struggling at the monent. Yes My cancer was found at stage 1 and I had no nodes and clear scans. Yes I had a bilateral mastectomy due to dense breasts and family history, a decision which wasn't hard but certainly upset me knowing its impact on my intimacy and body image. Yes my Herceptin was stopped due to heart failure twice but I got halfway. Yes I had a good reconstruction, which still just needs the icing on tbe cake (nipples) sorted. Yes...I have every reason to believe I will be one of the 90% But by golly things are tough for me presently. I'm uncomfortable with my body without clothes. The reality has finally hit home after final changeover...that this is it. I don't have breasts. I have memorials built as breasts. But no sensation. No natural movement. This is it. It has taken me 15 months to really mourn my loss. During treatment I just got on with it. But suddenly it's now got really hard. It's a phase I guess. Grief is a funny thing and I just need to work through. And even though I'm grateful to have hair again ..it is nothing like my hair. Texture is the same but colour and curl are very different to who I was. I miss my hair. Somebody said to me this week...I was trying to explain it...I'd just be happy to be alive. Well...hell yeah I am....and I explained it to her. If someone had their leg cut off due to cancer would you say that? Would you not understand why they grieve for the loss? Our breasts were part of us...our sexuality, fed our children, a coming of age. They're just breasts is probably the most hurtful thing someone could say. Last night I met many ladies at "State of tbe Nation" who so openly shared their stories. The thing that struck me, the thing that brought tears last night ...at home...in the early hours...was remembering what we quietly discussed. She said...12 years on...it doesn't matter how long it is...I will always miss my breasts. And I realised...Yes...I will too. Kath x
State of the Nation - update
A short update on the State of the Nation Things have been busy with the State of the Nation. We have now met with over 2,000 members and their support team to talk about their unmnet needs. We have also been celebrating great programs and services making sure we can learn from the communities, hospitals and services that are ensuring the best possible experience for all those affected by breast cancer. Last week we were in Adelaide and next week we head to Mildura and Broken Hill. So what are our discussions/ town hall meetings or consultations all about? We have taken some of the initial feedback from the Member Survey - yes you can still complete the survey if you have not already - head to the Member Survey online. At the consultations we break into small groups and discuss some of the challenges and issues in services during active treatment Then we discuss some of the gaps in service when treatment stops We are certainly finding some consistent national issues but also we have been able to determine some local issues. Including differences in costs for scans, wellness programs, access to psychosocial support and rehab programs. If you would like to contribute keep an eye out for local invitations to our meetings either through forums or through our State of the Nation meetings. Or you can share your experience by emailing us at policy@bcna.org.auState of the Nation - Question Parking
Thank you all for your ongoing responses to questions I have already posed - it is never to late to continue adding to your experiences. Now I am keen to hear about parking. When you were going through treatment did you have to pay for your parking? Did you receive discounts, did you receive free parking vouchers. I have a feeling this may be a hot topic - so look forward to our discussions KPState of the Nation - Brisbane and Cairns consultations
Dear online members We are making our way around the country to hear from our network of women & men affected by breast cancer so we can better understand the gaps and issues people are facing. Brisbane – this is your chance to make your voice count! Join us at All Saints Conference Centre on Tuesday 14 March from 3-5pm. Register here for Brisbane We will be in Cairns Wednesday April 26 This will be part of our free Information Forum. Find out all the details here Keep an eye out on your emails, the online network and through our social media to keep up to date as we head around the country. But of course if you have any topics you want to let us know about just comment below or send me a message at kpilatti@bcna.org.au Hope everyone is well KPState of the Nation - Question waiting times
Dear online networkers I hope you have all had a chance to complete our online Member Survey - if not you still have a chance to make your experience count. You can complete the survey here. I am wanting to gather the range of waiting times you may have or are experiencing for a reconstruction. You can post here or let me know directly at kpilatti@bcna.org.au If you are keen to share then can you please include: Your state, your hospital and what kind of reconstruction you are/ did wait for. Looking forward to hearing your feedback - good and bad! Cheers KPState of the Nation - member survey distributed today
It is a very exciting time here at BCNA. On Friday we launched our Member Survey. It is the time when we ask all those diagnosed with breast cancer about their experiences and views. The survey will help us continue to better support, inform, represent and connect our members. We will also use the findings as part of the State of the Nation. As an online member, you will have received an email with a link to the survey. If you have not then check your junk mail or go to our member survey page on our website https://youtu.be/5hcB4tIXqkI Please share this with anyone you know with breast cancer. We want as many voices heard as possible. Everything you need to know about the survey can be found on our member survey page. Thanks for all your help - everyone's voice and experience matters! KPState of the Nation - identifying our members needs and advocating for change
Hi, my name is Kirsten Pilatti, but I am known as KP around the traps. It is hard to believe, but I have been at BCNA for 11 years this February . I have loved every day here and am so excited about my next challenge at BCNA. I am leading a major new project for BCNA. We are calling it the State of the Nation. BCNA was built on the voices and experiences of women. Our advocacy is a significant part of our proud history and we know that the State of the Nation will only build on this. We are going to review the treatment and support of Australians diagnosed with breast cancer. We are then going to identify the gaps in our healthcare system and work to find solutions. We want to ensure all those diagnosed receive the best care possible. We plan to release our findings in 2018. This is when BCNA turns 20. The report will help us to celebrate our achievements but importantly provide us with a clear advocacy path for our future. We will gather and analyse information on a state by state and national basis. So, we need to hear from as many people as possible. I want to invite you to take part. I want to make sure we are capturing your experience and getting a solid sense of what's happening out there for you. I will not be able to do this without you. So how can you be involved? 1. We will be going to all members, with an email address, in early February to conduct a member survey - make sure all your details are up to date to ensure you receive the survey. Click here to update your record. 2. Complete the survey when it comes out - I will post in the community so you know when it is expected to hit your inbox. 3. Tell anyone you know who has been diagnosed with breast cancer - recently or in the past - to update all their details with BCNA to make sure their voice is heard. 4. I will regularly post questions or issues for discussion in the online network - look out for them and where you have an experience we can learn from then please let us know. This is going to be a busy 18 months, but I cannot wait to be working with you and for you. Regards, KP
