My body, my machine

The cancer is gone. The cancer is gone. I focus on this mantra in the more challenging moments of post operative life. That’s what all this was for. It’s The Reason I Went Through All This. It’s surprisingly easy to forget that when you have a mastectomy. From my own experience with immediate reconstruction, the distraction intensifies.

I woke up at 4am on Day Four after surgery. Actually I was woken up. My neighbour on the ward, was upset because she had been woken up by the nurse for ‘obs’. This is when the nurse takes various different observations. It can be blood pressure, heart rate, etc. For us breast reconstruction folk, it means pressing down gently on our new boobs to make sure the blood was still flowing to them and listening to our heart beat where our nipples used to be, using an ultrasound. It’s akin to the ultrasound you get when you’re pregnant. The mirroring of pregnancy and breast reconstruction are undeniable.

These observations are done in decreasing blocks of time. So the first night it was every half hour, second night every hour, third every two hours and so on. By Day Four, it was every four hours. The day nurse had suggested when she handed over that the night nurse actually do it at 6am just to give us a decent night sleep. Night nurse wasn’t up for it.

My neighbour on the ward was older than me, probably in her early sixties. I’m generally always the youngest kid on the breast cancer block. For the first two days we weakly greeted each other through blue medical curtains, not being able to get beyond our bedside to glimpse one other. I knew her voice intimately before I saw her face.

She had cancer before, when she was 49. She got it removed, refused the chemo, left her home and job and went travelling. She didn’t regret a thing. She eventually went to live in Portugal and looked after her mother until she died. Then it came back two years ago and she had her breast removed, again refused the chemo, got a new boyfriend and now was getting her boob reconstructed.

She was delighted with the result. Women who have breast reconstruction delayed are shown to be happier with their new ones than women who have it immediately after mastectomy. Maybe it’s because their baseline is different, maybe it’s because they’ve had time to consider all their options and make an informed choice. Lots of women (40% of my surgeons patients) go flat. It’s such a personal choice. Each body, each mind will find what’s right for them.

My ward neighbour was a changed woman after cancer. Freer, more focused on self care but also willing to care deeply for others. When I eventually saw her face, she had smiley eyes, laughter lines aplenty. She was soft voiced, but precise and powerful in her words. I liked her immediately.

Over the days that followed she shifted and changed. As we all did. Until that 4am awakening, when the nurse did one too many obs. She got out of her bed, with the stuff she could carry, took her blankets, her pillow and squatted in the day room in protest. It wasn’t just the obs. It was the broken bed she had complained about many times and it had never been replaced. It was the terrible food she had for dinner that she only managed two bites of. It was the pain. The helplessness. The lack of control.

So she took back control. She left the ward and threatened to leave the hospital. I know how she felt. Maybe we were on the same schedule of despair. I awoke to her muttered rebellion as she walked past my bed and then I immediately needed to pee. Getting to the toilet after a mastectomy and reconstruction is no small feat. There are so many steps to complete. We have to sleep in a kind of upright foetal position because our stomachs are too tight to lie flat. I have to locate the bed’s remote control, lower the feet end, higher the head end. Except there isn’t one button for that because the head and feet rise and fall at the same time. So you have to do both and then lower the feet on a separate button. It took me a day and half to figure that one out.

Then still I have to get my legs over the side of the bed which involves a sort of controlled fall. Then find slippers, get glasses on, make sure my drains aren’t tangled, ever so slowly stand upright. Never entirely so because the tightness doesn’t allow for full straight back. Then shuffle along, feet out to the sides like an elderly penguin.

Eventually I found myself sitting on the toilet successfully peeing, and a wave of despair passed over me. What was the point of this? Eventually I’ll get to this part of life again, whatever happens, where I’ll be this debilitated and then I’ll die. When I can’t pee. I can’t reach for something naturally and smoothly. I can’t drink without a straw. I can’t jump out of bed without a series of careful calculations. I can’t reach the call button, so lie crying until I shout for another patient who can to get help.

Despair.

I grew dizzy from it. From the intense awareness of my self as a machine. A being that will break down, malfunction and there will eventually be no more fixing. The wave continues for a while. Then I reach over to get toilet tissue. I’ve gone to the toilet cubicle that I know has a tissue dispenser I can manage. The other toilet’s dispenser is angled just behind you so it’s impossible for me to twist around to use.

I wipe, slowly stand, wash my hands, grab my drains bag and go back to bed. It takes me a full half hour to achieve this pee mission. In that time, my neighbour has been found by another nurse, apologised to, made comfortable in her broken bed, and is asleep and peacefully snoring. When I couldn’t find the point for all this pain, all this suffering, my body as machine put one foot in front of the other and got me into bed too.

I settled in for another little bit of precious sleep before the noise and chaos of breakfast time on the ward. But it’s not until I heard a few hours later that I was going home, I remembered my mantra.

The cancer is gone. The cancer is gone. That is what all this is for.

That is what all this is for.

For now, that’s enough.

8 thoughts on “My body, my machine

  1. Brenda

    I very much remember those first few times getting out of bed and making my way like an elderly penguin (ha!!) to a bathroom that seemed a mile away – even though it was about 5 feet from my bedside. It does get better. Eventually you’ll be able stand up straight again, and the act of going pee won’t knock you out. Just remember to be gentle with yourself – and you said the most important part. The cancer is gone. And we’re all here to help you through the rest. xoxo

  2. Paula

    Hi baby, I have also had surgery, even for very different reasons and it’s incredible how these daily actions and bodily functions need to be broken down into a million steps we never before had give a thought to. I have a chronic problem with very low blood pressure and the dread of fainting in one of those trips was nauseating. I eventually almost always had to go back to bed really quickly as my vision was fading quickly and the sounds were muffling dangerously. All this to say that your words have made me somatize the whole memory again and I am with you. I hope these scars will heal quickly so that peeing will be a thoughtless and painless action. For now, I wish you the courage to manage tiny steps knowing that you are getting better with each one you take. The cancer is gone, the cancer is gone!!! Love you.

  3. sokari

    I am relieved the surgery went according to plan and you are healing but yes the wake up is that our bodies are machines, vulnerable and in need of constant care which we often take for granted. ITs hard in the world of today to stay focused on the “new me” ie how to live in a body caring way and not go back to the old ways. Its kinda of boring but life is a heavy struggle for much of the time so searching for the beauty of everyday with those we love and who love us is the most essential way to be. Take care dear Heidi, love to you, Adam and Lilah.

  4. Heidi

    Thanks wonderful friends. Yes, day by day, hour by hour sometimes. And despair is normal. I’m sorry Paula if that triggered anything for you that was painful. But I guess revisiting pain by proxy or piece by piece way can be sometimes useful. I’m glad to have you as company though. I couldn’t wish for better. Yes, Sokari our new bodies. I joked today that I felt I was wearing a ‘thin suit’. Have to keep an eye on that feeling. xxxx

  5. Kamila

    I am happy that you could go home already today and that all that is gone. The cancer, decisions, waiting for the operation. Happy getting better!

  6. Karen

    Thank you for your beautiful writing and for sharing your many different feelings about this very strange and momentous experience that you are having. I love your mantra, ‘the cancer is gone, the cancer is gone’. Yes, that’s what it’s all about, for you and for everyone who loves you. Although I felt so sad for your despair, I also felt grateful that you were willing to share the feeling, it feels important that we can understand a little more about the experience you are having. I am so glad the despair passed and you were able to find joy/relief again, and I hope that next time the despair comes, you can remember that it will go away again. Sending you so much love, Karen xxxxxxxxx

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