🧑🤝🧑Today, BCNA took to Parliament House: Advocating for Change
Today, BCNA’s Director of Policy & Advocacy, Vicki Durston, stood at Parliament House to champion the voices of those living with metastatic breast cancer. Her mission has been clear: every person must be counted in all states and territories. Accurate data is essential to ensure equitable access to care, resources, and support for those who need it most. This is a powerful step toward recognition and better outcomes for the metastatic breast cancer community. 👉 Click here to watch Vicki's personal messagefor those living with metastatic breast cancer in our Online Network community 💬 What does being counted mean to you? Share your thoughts below.‼️Tomorrow is the day.
No one knows how many people are living with metastatic breast cancer, not just in Australia, but around the world - something that BCNA has been advocating to change for over 27 years. Together, we acknowledge the missing link and everyone who has waited to be counted. Tomorrow, we make it count. For too long, a community has been living in the shadows, their experiences missing from our national data. BCNA has been fighting to change that. Change begins tomorrow.‼️Tomorrow is the day.
No one knows how many people are living with metastatic breast cancer, not just in Australia, but around the world - something that BCNA has been advocating to change for over 27 years. Together, we acknowledge the missing link and everyone who has waited to be counted. Tomorrow, we make it count. For too long, a community has been living in the shadows, their experiences missing from our national data. BCNA has been fighting to change that. Change begins tomorrow.November 27th is almost here..... 🥳🥳
Metastatic breast cancer (MBC) is treatable but incurable. No one knows how many people are living with MBC not just in Australia, but around the world, something that BCNA has been advocating to change. "Our advocacy over the last three years has focused on counting those living with metastatic breast cancer (MBC) and our attention and determination has led to this defining moment. Through strong collaboration with governments, researchers, data experts, and consumer advocates, we have achieved what once seemed impossible - visibility for people living with MBC in our national data systems. This outcome is the result of the collective strength of a sector determined to transform invisibility into insight, and insight into influence. " - Vicki Durston, Director of Policy & Advocacy BCNA 📝The successful reporting of national metastatic breast cancer data marks a significant step forward in Australia’s commitment to improving cancer outcomes. It demonstrates how far we have come in recognising and responding to the needs of people living with metastatic disease. Stay tuned to find out the numbers on November 27th....let's make metastatic breast cancer count. 👉Learn more about MBC with our Upfront about breast cancer podcast episodeNovember 27 🚨 Big News Coming! 🚨Counting Metastatic Breast Cancer
In 2022, BCNA began the Making Metastatic Breast Cancer Count initiative - a vital step toward ensuring every person living with metastatic breast cancer is counted and supported. After years of advocacy, collaboration, and research, we’re thrilled to announce that on November 27, we will finally share the outcome of this groundbreaking work. This is more than just numbers - this is a long awaited step in the right direction towards visibility, equity, and driving change for thousands of Australians living with metastatic breast cancer. 📖 Learn more about the journey: 🔗 Time to Count: A Way Forward 🔗 Our Pledge 🎉 Get ready for the big announcement on November 27! Together, we’re making metastatic breast cancer count. 💖November 27 🚨 Big News Coming! 🚨Counting Metastatic Breast Cancer
In 2022, BCNA began the Making Metastatic Breast Cancer Count initiative - a vital step toward ensuring every person living with metastatic breast cancer is counted and supported. After years of advocacy, collaboration, and research, we’re thrilled to announce that on November 27, we will finally share the outcome of this groundbreaking work. This is more than just numbers - this is a long awaited step in the right direction towards visibility, equity, and driving change for thousands of Australians living with metastatic breast cancer. 📖 Learn more about the journey: 🔗 Time to Count: A Way Forward 🔗 Our Pledge 🎉 Get ready for the big announcement on November 27! Together, we’re making metastatic breast cancer count. 💖📣 Calling all men living with metastatic breast cancer to share their story ❤️
On November 27th, BCNA will be making a significant announcement for Australians living with metastatic breast cancer. To support this, we are looking to connect with and share real stories of those living with metastatic disease - including and importantly, men. Your voice matters, and your story can help raise awareness and understanding. 📷 We're also looking for men living in Victoria, for an additional photo opportunity next Wednesday, November 19th in Port Melbourne. For men especially, living with breast cancer can feel very isolating, I would love to see more connection and support from the men in this space living with breast cancer. Though the prevelance numbers are smaller - your story, voice and experience matters. Your involvement can make a real difference to others, and men living with breast cancer 💙 let's advocate for the men who need more support out there. 👉 If you’d like to share your story or learn more about the photo opportunity, please comment below or message me privately.
Exciting research showing possible 'on/off' switch for Mets
Exciting research being done on an 'on/off' switch for BC Mets - let's hope this one makes it thru the trial stages. Given this study has produced results from a mouse model, the timeline for introduction at the clinical level for *successfully* approved drugs and testing is closer to 12-15 years. It should be noted that fewer than 5-10% of drugs/tests actually make it successfully through this lengthy research process, which includes 3 phases of clinical trials. https://news.stanford.edu/2023/12/20/breast-cancer-metastasis-off-switch-revealed/
hormone blockers and plantar fasciitis
Hi Everyone, I was diagnosed with metastatic breast cancer in Oct 2020 and have been on Letrozole ever since. About 6 months ago I developed plantar fasciitis and my holistic Dr told me that it was unlikely to get better due to the hormone blockers. Has anyone in my position healed from a soft tissue injury like plantar fasciitis and if so what did you do?Things that Francis R. Croken wished he'd been told when diagnosed ...
I've copied the 'sources' at the bottom - but I thought you may like to read it below in one piece: Part 1 Cancer - things they don’t tell you about, at diagnosis …. Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well, might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won’t help your recovery. Fighting for anyone to stick with you won’t cure you. Those who can, will. You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out of fuel. Your body will change first and your mind will follow. You won’t lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it. You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You’ll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it ‘chemo brain’ for a reason. You will feel 'normal', eventually. Just a new kind of normal. When you feel afraid, let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologise for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand. The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don’t understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You’ll cry together too. Then you’ll get to a place where you will just live in the world again together and that is when you know that you have beaten this. The sooner you recognise that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don’t look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won’t have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won’t die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive. Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn’t be a game played on anyone’s terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money, or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won’t do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don’t have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that you will inspire others. Part Two: You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever. You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realise that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100 percent investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking. When you get to the other side you won't believe it. Some will chose not to believe you have terminal end stage cancer and they will tell you the disease is gone or in remission due to your appearance and attitude. This is not true, so let them rejoice and return back to their lives-- just let them go. You'll constantly wonder when it will take you-- it will. Slowly this feeling will fade, but end stage cancer will always be a part of you and will eventually take you away. It will define how you see the world moving forward. You're going to feel like the future is a funny thing to think about because it is now limited and the present is going to suddenly seem so incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you, because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now, let them go. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that, and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again. Leave the world a better place by putting your experience to good use for others to reference. Then, one day you will realise that you have reached the other side of cancer. Now, it is on your terms. Fight, Fight, Fight. Of course you are going to fight your cancer with every grain of your being. But, that may not be the only fight. You will have to fight to control your life and live the way you wish to live. Your family and friends will want to talk every day about your cancer, your test results, your pain. They will act in such a way that will seem like pity and offer patronising comments. Forgive them. This does not help you, as this forces you to face cancer every day, rather than on your schedule and on your terms. You must let them know that such comments do not help. I limited my family and friends to one day a week to inquire about my cancer, the other six days I placed it in the back of my mind. I found this very therapeutic. Those who love you will understand. Live your life on your terms, not theirs. Will the drugs and chemotherapy change my personality ? Only if you allow it. There is no cancer of the soul. Be fearless. You have faced it down. Let your spirit soar. With much love, appreciation, and affection to the staffs of the Melrose-Wakefield Hospital, Beth Israel Hospital, Melrose Medical and Surgical Associates, and Commonwealth Haematology and Oncology for their remarkable care and compassion. Born and raised in Malden, Francis R. Croken is a stage 4 cancer patient who is writing a journal with the intent that it will assist others in need of direction and hope. This is an excerpt from that journal. Francis was born and raised in Malden until High School. He attended Saugus High School and Salem State College. After joining the Peace Corps he attended graduate school and enjoyed a 25-year career in hospitality and event management. He was diagnosed with stage 4 incurable cancer at the age of 54, which spread to several other organs with little or no pre-diagnosis symptoms and was given a short life expectancy. After diagnosis he retired and now devotes his time to travel, writing, volunteer service, and giving. He underwent a clinical study chemotherapy regimen after extensive surgeries to remove some of the cancer. Francis R. Croken passed away in Feb 2015. Part 1 https://www.wickedlocal.com/story/herald-citizen/2013/07/06/cancer-things-i-wish-i/39458131007/ Part 2 https://www.wickedlocal.com/story/herald-citizen/2013/07/28/cancer-things-i-wish-i/39441997007/
