Why Lustre Me?

I’m not sure there will ever be the words to express what going through cancer is like.

Some of the words that come to mind for me are: passenger, helpless, fake it til you make it, parallel universe, and journey. For now, journey is the most apt. You move through distinct phases on a cancer journey. From symptoms, to diagnosis, treatment, then recovery. And while it was one of the hardest things I’ve ever experienced (definitely hoping to not repeat) there were also silver linings. My then husband stepped up for me in a way I didn’t think was possible. My friends and family were there for me steadfastly, whether I was having a good day or bad. I surprised myself at my ability to laugh in the face of the storm, and experienced many moments of happiness throughout. But there is also a feeling of guilt. I mean, I’m still here aren’t I, when many aren’t. Technically I got the all clear, given I had a hysterectomy. The possibility of a regional recurrence is something around 2-3%, good odds I’d say. Other survivors won’t ever get the ‘all clear’, and have to find a way to make peace with the reality of this shadow walking alongside them. 

My medical team would often say
‘the hard work starts when you’re in recovery’.

I couldn’t comprehend how that could possibly be the case, but my goodness they were right. I didn’t understand at the time that cancer never leaves. It leaves physical and mental scars that take time to heal from. For me it’s been seven years and my life is positively worlds away from where my journey began. It’s been a hard road that I’ve bumbled my way through. I understand that my doctors were focused on helping to treat the illness, but there’s so much more they don’t tell you. I don’t know if that’s because that’s not their area of speciality, they don’t know because people don’t talk about it, or everyone assumes the information is readily available. 

For me, I found there is a wealth of information and resources available when you’re going through treatment, and I’m so grateful.

I had access to Look Good Feel Good workshops, massages and a space to simply exist, with people who understood what I was going through. But once your treatment finishes and you step out from the dark cloud that is cancer, the sun comes out and it’s like you’re setting off on an adventure without a compass or map. So, what’s beyond cancer? The resources will tell you that you should get regular exercise and eat your fruit and vegetables (duh), but they don’t call out that it’s completely normal to feel disconnected physically and emotionally from yourself. I felt betrayed by my body. I couldn’t see the effects of my treatment, but I imagined that I was a wasteland, ravaged by the effects of radiation and chemotherapy. I was also struggling to come to terms with the fact I would be unable to conceive naturally or carry a child. I would need to use dilators so that I could be intimate with myself and my partner again, wasn’t that a treat. It took me years before I could look at my scars, or where my belly button had all but vanished from the surgeries. 

Some of the most powerful moments on my journey was meeting other people battling through cancer.

There were no walls or boundaries and you could talk about it all. I didn’t feel alone and always walked away feeling better and with information to support me. While I can’t speak highly enough of the support I received from friends and family, and I absolutely would have been lost without it, there was something special about connecting with people on the same journey as I. There are support groups out there doing a wonderful job, but I found there is an enormous void in the broader community, and a stigma about sharing these experiences. I was always self conscious that if I shared my story and what I had learnt, people might think I was trying to seek sympathy. What I truly wanted is to share information to empower others.

I want to normalise conversations about vulvas, radiation, hysterectomies, as well as women’s and gender affirming healthcare.

Creating Lustre Me is about building a platform and space for everyone, irrespective of their location and stage of their journey, to not feel alone, and find information to hopefully fast track their recovery and connection to a community. I truly hope that when you read my blog, you feel connected and if it feels right for you, reach out to connect with me.

That is where the power of stories
and information begins.

So for the next seven years, slowly but surely, I journeyed back to me. I learnt to love myself again. I learnt to appreciate what my body could do, not what it couldn’t. I learnt how to touch myself and be touched, not only intimately but to feel comfortable in my skin again. Dare I say it, the sex has gotten better! I got a yoni massage, which was transformative and sought therapy to process the loss of fertility and pregnancy. I would say that I learnt to be an even better, more powerful version of myself than had I not gone on this journey. Don’t get me wrong I give it zero stars and definitely wouldn’t recommend. But that’s not what life is about, is it?

Hi, I’m Carley, and I look forward to sharing with you all what I’ve learnt in the hope that you can shortcut some of the hard stuff. We’ll talk about fertility, sex, living in the moment, resilience and so much more.