peek into my breastless story

It is usually impossible to say when a story begins. A cancer diagnosis is just the moment when you know you have cancer. If it is a beginning, then it’s the beginning of a journey you would rather not take.

And yet, my story would be lacking essential bits if I didn’t start it with the consequence of overworking and ignoring my body for years. By February 2023, I was so weak physically, that it took my body four weeks to shake off a cold, and only four weeks later, I was back in bed, this time probably with Covid. And it still took, a shoulder injury to finally get me to a doctor and to finally concede that despite all the clever and wise things you will find in my work, I had failed myself.

For all I know, I only went to the cancer screening because I finally wanted to get better, wanted to connect to my body, wanted to take care of it.

One of the things, I did was finally taking time off and I discovered kayaking, though it’s not the best choice with a shoulder injury.

It were these earlier trips, and the strength I slowly gained from hiking and kayaking that played an important role in preparing my body for the double mastectomy.

At one point, I decided that I would do three more trips before the operation: hiking up a mountain (a small one), dancing on a beach and a final kayak tour, hence the images above.

The following are a few snippets of my breastless story. More will follow.

This was taken on my first day in the Warnemünde area. You can see on the quality of the photo that I was not well.

July 2023 – I was pretty certain that I wouldn’t have cancer, even after the biopsy. But just in case news wouldn’t be good, I booked two nights in a hostel in Warnemünde, Baltic Sea, so that I could get away, the day after I receiving whichever the news would be.

I can only recommend that. If you get a bad diagnosis, take time out, go to a place you like, be away, don’t hang around your flat, go somewhere where the air is fresh, where the sun gets in the way of collapse, and in my case where the expanse of the sea soothes you.

The first day, I walked from Warnemünde to Nienhagen and back, about 20km in total. My body hurt so much that night that I frequently woke up. But it was the best I could do. Get off the train, check in, and go on a long walk, drinking in the ocean with every step. I got a fraction of a rainbow on my way back.

Day three I spent mostly on the beach of Nienhagen.

On a whim, I decided to build a sandcastle. I didn’t plan it, but as I moved around the sand, I actually built two breasts. Later when the shadows grew longer, I took the photo you see on the right. Unwittingly I had created an image where my big breasts would be moved to the sides and a small chest would remain.

This was the beginning of actively searching for rituals which would allow me to say goodbye to my breasts – even though at the time, I didn’t know yet whether the insurer would pay for a double mastectomy.

I had three months to think, to process, to decide, to say my farewells. I’m glad I had this time.

Me on the way back. I was still moving and not hurting too much.

A day trip to Usedom, a Baltic Sea, island, days before the operation.

Fast forward to October, the final days before the operation.

In the previous months my main focus had been on getting stronger and healthier. My body was still reeling from years of overwork, and I was afraid that it might not be able to deal with the operation.

But I also did a lot for my mind and soul. I already spoke of rituals. I invented a farewell dance which I did several times but most significantly during a day trip to Usedom. I found an empty spot on the beach, and danced my farewell. And not just that, it was too cold for another sandcastle, but I began to draw in the sand.

By the evening, I dissolved the breasts image you see above and added a new one, where nothing but the scars would remain.

At the time, I didn’t know that my breasts were too big and too close together for two scars.

The night before the operation.

I remember sitting at my small writing desk, kind of peacefully, adding edits to the first draft of book 3, shaping. I wanted to take a new printout of the book to the hospital. Not just to read and edit it, but also as a kind of anchor.

It got very late. But when the printout was stowed away in my suitcase, I sat down on a beanbag, candles alight, topless, and I caressed my breast, apologising for having ignored them for so long.

Eventually, I took them in my hands and kissed them both goodbye.

I ignored my breasts for most of my life, but I am glad that we parted as friends.

Me back in my room after the operation.

The day of the operation.

When I woke up, I spoke English to the nurse, and I only realised my mistake when she mumbled, half panicky, something like: ‘But I don’t speak English.’

I was okayish before the operation.

I was a bit puzzled when the main operator tried to convince me to let her create two nipples from the one healthy nipple. But since it was unlikely that the nipples would have any sensations, and would basically just be brown spots, I declined. What puzzled me even more was the operator’s apparent disappointment. A bit like I was spoiling her fun. Mind you, she did a great job, even with the nipples gone.

I was taken to the operation theatre still conscious. They wanted me awake to position me carefully because of my shoulder injury.

Once in position, they began to sedate me, and there was this moment when I lost control and I began to weep bitterly. I wished I could touch my breast one last time, but I couldn’t move my arms any more. And then I was gone.

When I woke up, I spoke English and I felt great, like something that had disturbed the body, was gone. Not the breasts, the cancer.

But I also experienced an unexpected deep happiness about being breastless, and while I guess that some processing, especially with respect to cancer, is still needed, my happiness hasn’t wavered – quite the contrary.

My breasts memory stones.

In the hospital

I was five days in the hospital. I probably should have stayed another night.

For now, I just want to mention my breast stones.

Back in July, when I went to the Baltic Sea, I decided to find two stones in honour of my breasts.

I did and I was glad that they were there with me in the hospital. A symbol, a memory, and in a way an acknowledgment of their (former) existence.

The stones are still here, sitting on my writing desk. These days, I rarely notice them.

I wonder whether I should give them some kind of burial, some kind of final farewell. I haven’t decided, yet.

I loved being in the water. I love that I no longer have to wear a swimsuit.
Also, moving in the water helps a lot with mobilising the shoulders again.

After hospital, rehab & after

The things you can’t and shouldn’t do after a double mastectomy make for a long list and include things like not being able to open a window, or not being able to cut anything as solid as a potato. When you realise that cooking isn’t a good option, you have the great idea to go to a restaurant where you find out that you can’t open the door.

I don’t remember when I decided that I would write a book about my experiences. I made notes from early on. But it was only after the hospital that I wrote a chapter list, first on post-its so that I could resort them.

Interestingly, rethinking healthcare, hospitals, rehab is part of my main work: the easy town books and so I did quite a few rethinking notes in this time, too.

There is a lot about rehab that could do with a rethink, but despite that I am glad I had the opportunity to go.

One thing that frustrated me over and over again was how long my recovery took: eleven months.

To be fair. I had neglected and overworked my body for years. I was incredibly weak when I got the diagnosis. And while I did what I could to strengthen myself before the operation, years of overwork are not resolved in a few months.

And I probably was a bit too eager to write again and very likely didn’t always make the best choices. But still, I think it was June when I had the first times where I thought, ah, OK, I’m getting there. And only September/October saw me able to work fully again. Though, right now I wonder whether I shouldn’t slow down a bit.

Notes for chapters for breastless

Once again a day trip to the Baltic Sea in April 2024

Making notes for breastless, the book, in a local cafe.

Making notes for breastless, the book, at my favourite lake in the Müritz-Nationalpark.

Writing again & the magical lake

While I’ve put the breastless book on hold for the moment, I still want to write it. Not because I am eager to share my story, but because I remember all the simple questions I had and couldn’t find answers or suggestions to, back in August 2023.

In short, I want to write the book which I would have liked to read after getting my diagnosis. And it will contain a lot of very simple input: like what does marking the sentinel lymph node mean? And no, I didn’t look it up, because marking clearly means putting a cross somewhere, right?

It’s doesn’t. In my case it involved a doctor who was uncomfortable with touching my breast, who injected the breast with a radioactive solution, then I had to go for a walk to let the solution reach the sentinel node, then someone else took X-rays to see which of the nodes is the sentinel. If two are marked, two are taken out, like in my case. And then I went home and felt utterly shattered.

Back to writing. It took months before I could write any length of time again. Two of my tricks were to grant myself the occasional visit to a café and to travel to a lake where I could often find a quiet spot to read and in between go for a swim.

I hope breastless will become a book full of practical tips like: don’t panic, it’s normal to panic, don’t panic, breathe, strengthen yourself, speak to the people around you, what to pack, what to expect, all the different kinds of nurses and doctors, gender and how to navigate when you are not a mainstream character and a lot more.

I’ve been wondering whether it would be best to write breastless with other authors. And there is the idea of splitting the book into two or three. book one: personal stories of breastlessness (all gender, all reasons), book two: practical tips for everything from screening to years after the operation and everything in between, book three: inspirations for nurses, doctors and clinics.

If you are a cancer patient, a nurse, a doctor, a hospital manager, a yoga teacher or anyone who would like to share their experiences, ideas and visions in a cooperation for the breastless books, the website and the project, please, get in touch: contact@breastless.net

Me hiking with my Nordic Walking sticks. I remember swearing that I would never be seen with these silly sticks. But then came rehab and the information that you can train up to 90% of your muscles when Nordic Walking. You can’t beat that. I want muscle, sticks it is.

Another spot at my favourite lake in the Müritz-Nationalpark.

breastless

I love being breastless.

I know it’s odd. How can someone be happy about being minus two organs? It puzzles me, and maybe I will one day take the time to explore this more.

For now, I am just happy.

It’s like I am finally who I am. I don’t even miss the nipples.

And maybe most importantly, I am finally interested in my body. I didn’t know what to do with the breasts, not that I thought much about them. But I know what to do with a chest: you can strengthen and train it.

In a way, I feel like I have returned to who I have always been. It’s odd and great. Life seems to like contradictions.

As for gender, there is an interesting bit on my Charlie Alice Raya website >

Do I recommend a double mastectomy?

No. That’s not the kind of thing anyone but a doctor can recommend.

I went through a roller coaster in those three months. First determined to have the breasts removed, then starting to doubt my determination, after all, what does it do to the body if you remove two organs?

And that was my biggest worry. How does the body cope with a removal? I have to shrug at this point. Like I mentioned before, I wasn’t going in strong, so I don’t know why my recovery took so long.

But there are a few things I can say for the time after the removal.

• Swimming is great.
• Don’t panic if your chest feels like a belt is being tightened around it. I still sometimes have echoes of that feeling.
• Have rituals, before and after the operation.
• Explore life.
• Occupy yourself with things that interest you.
• Yoga, meditation and breathing are all a great help, even though I am still pretty much a beginner.
• Be patient. It will suck. But there is a good chance that you will get better.