Not again

The third time, you'd think you'd be ready. You're not. I've had breast cancer twice before, so routine MRIs are familiar territory. This time was different. A text from radiology, images in a portal, circles and arrows I recognised immediately and had hoped never to see again. In this episode, I’m sharing  the story of my third cancer diagnosis, my mastectomy and the long unglamorous miserable climb out of the deepest hole I've ever been in. 

We’re talking about what the five weeks of waiting actually looked like, not the polished version, but the ten-kilometre daily walks, the compulsive decluttering, the phone I couldn't put down.

There's a lot in this one about the people around me during that time. Ruby turning three in the middle of the chaos, the joy in her face in those photos and the dread in mine. A partner who stayed steady when I wasn't easy to be around. And a birthday I spent in hospital that was surreal in the way only very real things can be.

We’ll get into something that doesn't get talked about enough: what the not-knowing does to your nervous system, and why a confirmed diagnosis (even a hard one) can bring a strange kind of relief. There's a distinction I've been sitting with between pushing through and actually healing. They're not the same thing. This episode is the beginning of that conversation, and there's more of this story to tell.

LINKS:

• Work with Monica: https://cultivatecalmyoga.com.au/energy-alchemy/ 
• Curious about Yoga Alchemy?: https://cultivatecalmyoga.com.au/yoga-alchemy/
• Website:https://cultivatecalmyoga.com.au/
• Instagram:https://www.instagram.com/cultivatecalmyogabrisbane/

Transcript

Monica:

[00:01:01] Welcome friend. This season is different. 

[00:01:05] In previous episodes, I've shared a lot about the nervous system, about yoga, philosophy, emotions, and the tools that help us live calmer, more connected lives. I've shared some of my personal experiences along the way, but always from a distance. This season of the podcast, I'm taking you deep inside.

[00:01:27] I'm gonna tell you the story of my third cancer diagnosis, my mastectomy, and the long unglamorous miserable climb out of the deepest hole I've ever been in. I'm gonna tell you about rock bottom and how I climbed out and what I found on the other side. Now, this isn't just a cancer recovery story, it's more a story of the heroine's journey, going deep into those dark places, losing everything before we can discover who we really [00:02:00] are.

[00:02:00] None of this was glamorous. I was terrible company, but I changed in ways I couldn't have engineered for myself. And I'm gonna share all of that with you. But before we begin, let's take a long, slow exhale together. 

[00:02:22] Now, the information I share in this podcast is my own personal experience. It's not medical advice. Please always speak with your doctor or health professional.

[00:02:33] I've had breast cancer twice before this, which means every year I have an MRI. It's routine for me the same way people have a dental checkup or a blood test. I lie face down in a machine for about 40 minutes and let it take pictures of my chest. I've been doing this forever, a decade. It's not a big deal for me anymore.

[00:02:55] So when I went in for my routine MRI, I wasn't particularly worried. I'd just come back from holidays. It was one of those things that you just tick off your list of life admin tasks. I went to the appointment, lay in the machine, went home same as every year and a few days later I got a text from the radiology place saying my images were available on the patient portal.

[00:03:16] I'd never had that before. In 10 years of MRIs, I'd never been sent to a portal. It was always my doctor who called, so I was curious and I couldn't help myself and logged in straight away and there were my images and they had circles on them and arrows. And measurements. Now, I've seen a lot of MRI images over the years, my own, and the other ones that doctors have showed me to explain different things.

[00:03:42] I know what a clear image looks like. I know what images that have something in them look like, and these had something in them, and I was able to scroll back through on my previous years of images. No circles, no arrows, no measurements. Just gray and white shapes. My stomach dropped and my heart skipped a [00:04:00] beat.

[00:04:01] Fuck. There was no doctor's report on the portal, just the images. Just circles and arrows with no context, no explanation, no idea what I was really looking at. I called my doctor and he was overseas on holidays. The receptionist said she'd send him a message. I spent three days trying not to think about it, but obsessively checking my phone, wondering if I'd miss a call, three days, trying not to think about it when it was just constantly on my mind.

[00:04:32] When my doctor finally called back, he said, look, it's probably nothing but let's get a biopsy. I'd been down that road before and I don't have enough fingers to count the number of biopsies I've had. He referred me for an ultrasound biopsy. I booked in, went along, lay on my back, and the radiologist spent a long time looking.

[00:04:50] Then came the news that 500 bucks and several weeks had been spent discovering they couldn't find it. Now, that's not the first time that's happened to me. The type of cancer that I've had previously doesn't show up in an ultrasound for me. It never did. It only ever showed up in an MRI mainly because younger women have dense breasts and an MRI can see through that density.

[00:05:13] Also an MRI is done face down and ultrasound is done lying on your back. The tissue sits differently. The geometry is different, and with something this small, it just wasn't able to be found in the ultrasound. So 500 bucks for nothing, and then the waiting game continues. My doctor then referred me for an MRI guided biopsy, the right test, the one that should have been done first if we lived in a different world.

[00:05:38] But Medicare has these rules around who could access an MRI guided biopsy. They're really expensive. They're about five grand. They're highly specialized and you have to exhaust all the other options before you can access them. So we had to do the ultrasound that didn't work before. We could do the one that would, that's just the system.

[00:05:56] Now, here's the thing, there's two specialists in Brisbane who can [00:06:00] perform this. One of them was on leave and there was no way to fast track it. It took five weeks to get that appointment. I asked my surgeon to expedite it. I pleaded with the radiology place, given they know my family history and my own history from the last 10 years, nothing.

[00:06:17] So over the course of those five weeks, I went utterly batshit crazy. And I mean that in the most physiological sense. My nervous system went into full fight or flight overdrive and stayed there with nowhere to put all that nervous system energy, that survival energy, the threat had been detected.

[00:06:39] Adrenaline was causing through my bloodstream, and there was absolutely nothing I could do about it. Now, uncertainty and loss of control are two of the main causes of distress. You could probably remember that from the early days of COVID. It's the not knowing and not being able to do anything about it that drives us crazy.

[00:07:00] So I moved that survival energy constantly. I was walking up to 10 kilometers a day, not because I wanted to notice some kind of exercise program, but I just couldn't stop. My body was trying to discharge all of this survival energy. It was trying to complete a stress cycle that had no end. There was no lying to outrun, no threat that I could fight.

[00:07:26] There was just a waiting room and a phone that hadn't rung yet. The walking wasn't enough, so I decluttered as much as I could. I was fortunate that the council's annual curbside junk collection was happening, so I could just chuck everything out on the front lawn and it would just get taken by people who were recycling or council.

[00:07:45] Now I'm not really a clean person. Tidy, yes, but I'm not pedantic about cleaning. But here I was trying to clean my mind of this fear. I started cleaning everything. I organized all the cupboard that didn't need reorganizing. I decluttered the garage, the [00:08:00] clothes, the books I got rid of as much stuff as I possibly could.

[00:08:03] But I had to stop with my partner's stuff. So I'm a minimalist and I love getting rid of stuff. He's a maximalist and so this is a source of much comedy in my house. And as much as I wanted to get rid of some of his junk, I drew a line there and let it be, because I knew my obsession with getting rid of stuff was just my coping mechanism and not his.

[00:08:24] And then there were the shirts. Now I hate ironing, and one of the benefits of quitting my career and becoming a yoga teacher was that I thought I would never have to iron again or wear shoes to work. Really great upsides. We have an ironing person for my partner's work clothes. I leave the pile of dirty clothes on the front porch.

[00:08:44] They come back two days later, ironed on hangers, and it's only 40 bucks. I can't think of a better chore to outsource than ironing. Anyway, I hadn't ironed in years, but I pulled out the squeaky ironing board and started ironing not to save money, but because I needed to keep busy and distract myself from the mental free fall I was in.

[00:09:04] I needed to be doing something that wasn't thinking because the alternative was just sitting with the weight of not knowing, and the weight of not knowing was unbearable. In yoga philosophy, this quality of restless, agitated compulsive energy is called Rogers. It's the state of a nervous system that's been triggered, mobilized, and has nowhere to direct that energy.

[00:09:30] My nervous system had detected a threat and was generating so much energy to deal with it. and when that energy has nowhere to go. It finds the nearest available outlet. And for me it was walking, yoga, ironing, throwing stuff out, and generally keeping moving. If I were a character in a movie, you'd look at her world of activity and think she's unhinged.

[00:09:55] And you probably know that feeling though, that inability to sit still [00:10:00] keeping busy physically and mentally in the hope that you can outrun those dark thoughts. Well, spoiler alert, you might have a clean clutter-free house, but you can't escape what's coming. The uncertainty and the unknown was its own particular torture, not knowing how bad it was.

[00:10:17] I'd had these niggling back pains since Ruby was born. Maybe it had spread. Maybe I should have seen someone about that back pain. My mind was on a wild rollercoaster running through every worst case scenario. When I need a mastectomy, I'd spent years trying to conserve my breasts. Would I need chemotherapy?

[00:10:37] What if they didn't get it early enough? And here's the thing, once I actually knew, once the diagnosis was confirmed, it was almost a relief. The not knowing has been its own hell knowledge, even terrible knowledge gave my nervous system something real to work with. The dread of the unknown is always worse than the known thing.

[00:10:59] I stopped working during those weeks. My nervous system was all over the place, and I wasn't really in a position to hold space for others. And whether we're aware of it or not, our nervous system can pick up on other people's energy, and I didn't wanna spread my dread. Now, in the middle of all of this, it was Mother's Day, and then Ruby turned three.

[00:11:20] I honestly don't remember her birthday very clearly. The whole period is a bit of a blur. I look back on the photos from that time and I wanted there to be photos as I was very conscious that I might not be around, and I wanted photographic evidence for Ruby that I existed. know that seems dramatic, but I've had clients who lost their moms when they were young, and the only thing they can remember of her were the photos.

[00:11:44] And as I look at those photos now, she was delighted in the way that three year olds are delighted by everything involving balloons and candles and birthday cakes. But my eyes were showing the dread. I looked dead inside. it was also Mother's [00:12:00] Day during those weeks, and I couldn't be present for that either.

[00:12:03] I was so deep in that state of rags, so thoroughly caught up in my own negative spiral. I was just going through the motions of life while something was eating away at me from the inside. And again, there were photos of that celebration with my mom and with Ruby, but you can see it in my face. I wasn't really there.

[00:12:22] We never told Ruby what was happening. She was only three. What can you say? I've thought about it a lot since, and I think she felt it anyway. Children pick up on these things that we think we're hiding. They can feel the energy even if they can't name it, and I wonder what she sensed in those weeks and months, even if she had no words for it.

[00:12:43] Finally, the day of my MRI biopsy came. My mom took me to the hospital for the procedure as it's done under sedation so you don't move. Two days later, I got the call from my doctor. It's cancer, but it's early. You're lucky. was working from home at the time, so I just barged into his office to tell him.

[00:13:05] It had been an anxious wait for him too. He stood up from his desk. He didn't say anything at first. He just stood up and held me, and then he said, whatever happens, we'll get through this. Now I wanna say something about this man because he's really important to the story and I wanna honor him properly.

[00:13:23] He was steady in a way that's really rare during everything that followed and there was a great deal. He never waved, not once. He worked away interstate to make sure we had the money to cover the costs. That would be about 40 grand. He kept Ruby's world normal when mine was falling apart. He let me drop my bundle entirely.

[00:13:46] He let me do the bare minimum without complaint, without making me feel guilty for it, never once suggesting I should be doing more. He also received the full force of my anger and frustration. Because that's [00:14:00] often what happens when we are terrified and the person who's safest is standing right in front of us.

[00:14:05] We give our worst to the people who make us feel safest. I'm not proud of that, but it happened and he never waved. I genuinely believe I couldn't have done what I did without him as that foundation and that day in his office, when he stood up and held me, I just needed to be held. He knew without being asked.

[00:14:25] My surgeon had known me for 10 years. He knows my full history, the first diagnosis, the second diagnosis, the years of biopsies. In between. Now, I'd had over 50 rounds of radiation to prevent cancer, and it didn't work. was no more preventative action available to me. I'd had the maximum dose of radiation.

[00:14:48] My only option now was a double mastectomy, and I said to my surgeon, I know I need this mastectomy, but I'm not ready for that right now. Can we just remove the lump? He said, sure. Surgery's. Next week he. I'd had four lumpectomies before. I wasn't particularly nervous. I knew exactly what I was in for the pre-op appointments, the fasting, the gown, the cannula, the weighting, all of that stuff.

[00:15:14] But before the surgery, there's a specific procedure called a wire localization. early stage breast cancer doesn't look different from any regular breast tissue. So before a surgery, a wire is inserted into the breast under a mammogram to mark exactly where the surgeon needs to go. Now I've got low blood pressure and the wire localization makes you.

[00:15:37] Stand up after you've fasted while your breast is being compressed. At a ME mammogram, while a radiologist inserts a wire into it, it's painful. It's a really awkward procedure. And the first time I had it done a decade ago, I fainted. So I walked into the radiology room breathing very differently, and I looked up to find that the [00:16:00] radiologist was one of my yoga clients.

[00:16:03] Now I've got thousands of clients and many of them are health professionals who work at the hospital I'm being treated at, and that wasn't the first time I had a client treating me. Now for someone who's quite private, it's particularly awkward having your client holding your breast. Nevertheless, she was wonderful and professional, and I was able to have the procedure lying down on my side as I told them.

[00:16:23] I'd fainted previously After the wires inserted into the breasts, it's kind of like hanging out like a coat hanger, and I just go back to the pre-op area and weight. Finally, I got wheeled into theater. It's very cold and busy in an operating theater, and you lie on a thin metal table while you get hooked up to all these devices.

[00:16:44] There's music playing, and you get a sense that you're just an interloper into someone else's workplace. Everyone's chatting about their weekend. Everyone's chatting with you too, while they attach all the monitors and put the cannula in. They're deliberately trying to distract you with an overload of small talk.

[00:17:01] Then my surgeon tells the anesthetist that I have a yoga studio out the road, and she tells me that she knows me and she's been there before. Again, more clients seeing me naked and vulnerable. My surgeon looked at me lying perfectly on the table and said, you're always so calm in here. How do you do it?

[00:17:17] I said, it's all the yoga, and that's the truth. 16 years of practice, a nervous system that's been trained again and again to create that safety in the body, even if the mind is doing something entirely different. Yoga doesn't make the hard things easy, but it means that you can be present for them. It means you don't abandon yourself when you most need it.

[00:17:38] The surgery went well. I stayed overnight, and the next day I was discharged and then the surgeon called the pathology had come back and they hadn't got clear margins. So when the tissues removed in surgery shows cancer cells right to the very edge of what was taken, it means likely that there's more beyond that boundary.

[00:17:59] Basically, they hadn't [00:18:00] got it all. So I needed another surgery. Fuck, I thought this was meant to be just a quick get the lump out while I braced myself for the mastectomy process. Now it was turning into something much bigger than I intended. The second surgery was scheduled on my birthday. When I was lying there in the theater being prepped for my re-excision, you have to repeat your name and birthdate so many times as they all check your arm and leg bands to make sure they've got the right person.

[00:18:29] And every time the person said, oh, it's your birthday, happy birthday. And I'd force a smile and think, yeah, thanks. I've got cancer. Now my mom is an exceptional baker. She could replicate anything from the Women's Weekly birthday cake book, and if you're Australian and of a certain age, you know, that's a pretty high standard.

[00:18:49] She came to hospital that evening and she brought my favorite lemon meringue cake because I'd asked for one every year since I can remember. She would ask me what sort of cake I want for my birthday. She brought in a whole cake. She sang Happy Birthday and even lit the candle. I said, mom, stop it. Don't set off the smoke alarms.

[00:19:08] She did it anyway. I ate two pieces. They were delicious, and I had a fridge in my room, so the cake went in there. Later that evening, my brother visited. His partner had also made a cake. He didn't sing. He talked for a while, and his eyes filled with tears. I told him I wasn't gonna die anytime soon. And we ate cake.

[00:19:30] When my dinner came, there was a small cake and a note from the kitchen saying Happy birthday, so I ate that too. I couldn't sleep that night probably from all the sugar, but I just had so much on my mind. It was about three 30 in the morning and I wondered, is it too early to get up? The hospital was noisy and so was my mind.

[00:19:52] Why is this happening again? I thought this was behind me. I thought I dealt with the cancer twice. I'd [00:20:00] been vigilant for nearly a decade. I'd done everything right and here I was again in hospital on my birthday and eating a second surgery because the first one didn't get it all and the dark thoughts arrived.

[00:20:12] The ones where you start going back over your life decisions, looking for answers. After my previous diagnoses, my oncologist had recommended hormone therapy, standard treatment for hormone positive breast cancer. But I chose not to take it because taking it would've rendered me infertile and I wasn't ready to close that door.

[00:20:32] I chose to get pregnant instead.

[00:20:35] Now, my previous cancers had been hormone positive, and there's a known association between pregnancy hormones and hormone positive breast cancer. My oncologist had told me this. I'd known this. I knew the risk, and I made the choice anyway because I wanted Ruby. And now I was faced with my decisions and I don't regret it one bit.

[00:20:54] But now I worry that I won't be there to see Ruby grow up, and that wasn't fair on her. I asked the nurse for a cup of tea and I ate two more pieces of cake. What else are you gonna do at that time of the morning when you can't sleep the next day? I went home with my cakes and Ruby's favorite things are birthdays, birthday cakes, and singing.

[00:21:14] Happy birthday. I wasn't in the mood for more cake, but before I could even remove the hospital band from my wrist, we had parties, hats on, candles out, and Ruby was singing Happy Birthday at Full Volume with a particular emphasis on the hip hip. Hooray. I didn't feel like any more cake, but I wasn't gonna miss that.

[00:21:34] Life's too short to postpone those little things that bring us joy, especially when everything else is so hard. If you've listened to my earlier podcast episodes on the nervous system and polyvagal theory, you'll probably recognize what I've described through those six weeks. From the portal to the surgeries I was in sustained fight or flight mode, the threat had been detected.

[00:21:57] Survival energy was flooding my nervous [00:22:00] system. My amygdala was running the show and everything. My body was telling me to move, act, do something. Walking 10 Ks a day because I couldn't be still cleaning at 10 o'clock at night. Ironing of shirts that didn't need ironing. That's the physiology of fight or flight in a body that can't fight and can't flee.

[00:22:19] And when the threat is a test result or a medical system that moves at its own pace, that survival energy has nowhere to go. It stays in the body. It becomes tension, insomnia, compulsive movement, and the inability to be still for even five minutes. That's the physiology of dread and dread is its own particular experience.

[00:22:41] It's not quite fear. Dread is more that state of waiting for the thing that you know is gonna happen. It's formless, it's pervasive, and it's exhausting. Because there's nothing you can do about it. And when the nervous systems in this state, the amygdala, the fear center of the brain is in charge, the prefrontal cortex, which is responsible for calm, rational, logical thinking takes a backseat.

[00:23:08] fast and negative. We catastrophize, we think about the worst case scenarios. We spiral through these negative loops. This is not a thinking problem. This is a sign of a nervous system in distress and you can't think your way out of it. You have to move it through, which is very much what my body was trying to do with all that walking.

[00:23:32] When I finally knew, when the uncertainty was over and the thing I suspected was confirmed, my nervous system could actually start working with something real. That's why knowing felt like a small relief, not because the news was good, but because the dread of the unknown is way harder than the known, at least with a confirmed diagnosis.

[00:23:53] I could stop waiting. I'll talk a lot more about the nervous system's role in this journey across the coming episodes. [00:24:00] Understanding what was happening in my body, not just my mind, was what helped me find a way through. Not around. Not over through. And that's the heart of some of the work that we do in Alchemy.

[00:24:12] It's not just the poses, it's not just the breathing, but it's that deep literacy of your own nervous system, knowing what state you're in, knowing what your body needs in each state, learning to work with your body and your energy rather than against it. I've been teaching this for years and now I was gonna live it.

[00:24:30] wanna say one more thing before we close, and I'll come back to it properly in the next episode. I'd had breast cancer twice before I'd been through a divorce. I watched my father die of cancer while I was navigating my own diagnosis. What all of this taught me is that I'm really good at suffering. I know how to endure.

[00:24:52] I have a really high capacity for stress and I can tolerate a lot. I know how to keep going when things are very dark. I know how to sit with difficulty without it destroying me. I've done it before and I can do it again, but sitting in that hospital room on my birthday at three 30 eating cake, I noticed something different.

[00:25:13] I noticed that. Being good at suffering might not be the same as healing that pushing through, staying strong, enduring all the things I've always done might be part of the pattern that keeps bringing me back here more on that next time. So this is the beginning of the story I'm going to share with you across this season.

[00:25:32] There's much more to come and some of it's not easy to hear. The reason I share it is because I know that many of you are, are in your own difficult season right now. Many of you are waiting for your own results or carrying your own kind of dread or facing something that feels too overwhelming to hold alone.

[00:25:52] So I want you to know that you're not alone in it, and a reminder that eventually everything changes. And beneath [00:26:00] all the suffering, beneath the narrative, the fear, the energy, the anxiety is the light of awareness, and that light of awareness is always, always on your side. Until next time, my friend.