Dear readers and friends,
I often start my stories with this sentence “Accept and don’t see yourself as a victim.” This will always remain MY MOST IMPORTANT RULE. Our lives will never ever be the same again but remember, for whatever reason you got to read this blog, that you’re not alone. There are so many of us, supportive of one another, and we walk hand in hand in the fight against breast cancer.
I’m in my 6th year, post-breast cancer treatment physical reconstruction. As a breast cancer survivor, the more I speak about my experience and journey, the more I realize how difficult it is for many healthcare professionals, to fully understand what a breast cancer journey really is about. They may tend to forget that the monitoring and post-treatment, which is a completely new experience and journey, but still part of the care pathway. And I must admit that during this monitoring period, lasting for years if not for a lifetime, women are pretty much left alone. I have to manage many appointments and make sure I’m keeping control of my worst enemy, breast cancer, always aware that it might show up again. But the thing that we’re not necessarily prepared for, is other unexpected threats that may show up as a consequence of ongoing treatments and body evolution. How funny isn’t that. Right now, it’s 1-0 for Cecilia against breast cancer. Nonetheless, I got pushed into a supplementary fight against something that has the potential to suddenly disrupt and change the course of my life. This new fight, something that no one really talks about very much, can come as a surprise to breast cancer survivors.
Fight against what? Osteoporosis.
There are too many times a woman is waiting for life-changing results. I do include the results of my body scan and bone densitometry that are needed due to my breast cancer treatment and early menopauses (climacterics) provoked by the cell therapy
“Not a big deal to be in menopause, you survived breast cancer Cecilia!”…What one tends to omit is that there is a story behind each woman, and menopause is the natural path to weakened bones. Add to that the treatments and especially my cell therapy that accelerates that process. So, for me, my body scan to monitor osteoporosis is not just a simple scan of your bones. It’s the risk of receiving results which will feel like a second or third “punishment”. Breast cancer took from me much of what makes a woman for a long time, if not forever. But osteoporosis can add another level of impact, meaning all hobbies and activities where one fully solicits the body, like skiing, hiking, skating on beautiful frozen lakes, could be taken away. Like me.
Indeed, I’m not only shaking when receiving the results of my follow-up and extension check-ups done every year, I’m also shaking whilst waiting for my bone density scan results. A bone density exam is done on a DXA device, which is quick and completely painless. But what if…what if they tell me that I need to slow down in my activities that I love and where I could escape and forget “my reality” during my fight against breast cancer? What if they tell me that I should stop skiing? What if it becomes necessary to start another treatment, but this time for preventing my bones from breaking?
NO, NO, NO…. this is NOT something I want to live. I’m a lucky woman right now, my results are not too bad. Only some nutritional complements needed. But, every 2 years, for now, I’ll be shaking. Thinking that I never again want to be imprisoned by my body.
But every day, I need to keep this in mind, to adapt and adopt ways to prevent osteoporosis to hit me too hard. I continue with exercising and, of course, maintaining good nutrition that can help me in the prevention, against recurrence of breast cancer but also osteoporosis. I cannot imagine not doing what I’m doing today, and I cannot imagine what I would replace my favorite hobbies and activities with. That would be too hard to accept. I already accepted a lot.
Prevention, Early Detection, and Patient Experience are key words when it comes to bone screening too. Not only breast cancer screening.
Why Patient Experience? Because the care providers, having me for my bone scan, never showed a sign of acknowledgement of the anxiety and fears I suffer from when undergoing this exam that can seem to be so anodyne. The empathy level is pretty much at zero whilst my needs of care and empathy are sky high.
No one ever pronounced a single word of “We know where you come from, what you’ve gone through,” and there was no attempt to build some form of caring environment. Maybe the care providers don’t realize the importance they have and it’s the very reason for being so neutral, reason for underestimating the importance of the environment, patient education and empowerment. How it’s embedded in a complete care path, integrated. A place where a woman can undergo all these exams, and where the care providers will know me and my needs and reason for being there, a team who will know why I’m there, that will know that I’ve been through a very complex journey before coming to this bone scan. They will show empathy. Empathy truly is magic.
Therefore, I will always continue to challenge the healthcare ecosystem around women. Make sure that every woman, colleagues, friends and family, never skip a breast cancer screening of course, but their bone check-ups too, for all reasons mentioned in this post.
I’ll continue to pledge for you, for patient empowerment and education, leading to screening compliance, treatment adoption and to act when it comes to nutrition and finding new ways to replace their hobbies with something else, communicating with peers, if suffering from osteoporosis.
Never give up, you are all my heroes!
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