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A view of the edge of life

Thursday 23rd October 2014

A year ago I got off the bus to work and found myself walking much slower than usual. I just couldn’t stride the way I usually did, and by the time I made it to my desk, I was in a fair bit of pain.

By early afternoon I had decided I needed to go to the doctor. When I couldn’t get an appointment for the same day, I emailed my boss and said I was off to the after hours doctor, and that I would be back in a couple of hours.

Ever the optimist – I wasn’t back at work for nearly two months.

Kate Baker lives with a quarterly reminder of what could have been.

Photo: Diego Opatowski/RNZ

The after hours clinic sent me to the emergency room, the emergency room sent me to the women’s clinic, and within days I had surgery which removed my right ovary, my fallopian tube and a tumour the size of a baby that I didn’t know I had.

They cut me open from hip to hip and all the doctors, so many doctors, kept saying that I was so lucky they could cut me that way and not from the belly button downwards, because it meant I could still wear a bikini. As if that was what mattered to me as a young woman. Not my health or my life, but my appearance. Not the fact that I now only had one ovary, or that I had somehow grown an enormous, mysterious tumour.

Immediately after the surgery I’d been reassured that what they had removed didn’t look like cancer, and so when I was called by the hospital to bring forward my scheduled follow up I’d thought nothing of it.

I was shocked to be told that it turned out that what they removed probably was cancer and that I needed to have more surgery – immediately - to see if it had spread.

Immediately after the surgery I’d been reassured that what they had removed didn’t look like cancer, and so when I was called by the hospital to bring forward my scheduled follow up I’d thought nothing of it.

So just seven weeks after the first, I had a second surgery, this time to remove my appendix and my omentum (which is a fatty organ in your stomach that ovarian cancer sometimes spreads to) and to take samples from my uterus and remaining ovary, so all these could also be tested. Again, I was told by the aging male head of gynaecology that I was very lucky, that he had convinced the oncologists to do this second surgery laparascopically – instead of cutting me open down from by belly button in an incision that would meet the previous one and create an anchor shaped scar. Again he referred to my ability to wear a bikini, as if he personally was saving me from wasting my youth wearing a one piece.

Anchor scar or no, after those surgeries my body and my life were totally different.

The days after the second surgery were a strange painful blur. I don’t remember much apart from sitting on the tiny back deck of my flat as my mum weeded my garden, trying to do something helpful when there was nothing to be done but wait.

I had been told that it would take a couple of weeks for the results to come back, but within five days my oncologist called to tell me that everything was fine – that the tests had come back negative, that I wouldn’t have to have chemo, that I would be monitored closely over the next few years but that would be it.

Everyone was so relieved, my family, my workmates, my friends, and I foolishly thought that that was it – that from that point onwards everything would be ok.

In the year since then I’ve learned that it never goes away. I spent months unable to do much beyond working and sleeping. Having had what was essentially the same as a caesarean section, I’ve had to work hard to regain my strength. Just this weekend I managed to walk 20 minutes over the hill from my new house to the beach without having to stop for a rest and it felt like a tiny triumph – something that I absolutely would have taken for granted a year ago. 

Every three months I visit the hospital for scans and blood tests, and far from being reassuring, it is more like a quarterly reminder of what could have been.

The worst thing that can happen nearly happened. I wasn’t saved from the brink of death, toes over the edge, learning forward. But the edge became clear to me for the first time.

My newfound awareness of that edge is constantly with me. Every single day I feel grateful for all of the things in my life and that I am still here - that I wake up each morning. Small pleasures have become very important to me: coffee and making the bed and swimming in the sea and cooking dinner each night for the person that I love.

I think about death a lot. My own, and other people’s. Which is the ultimate change, in a way. From existing to not existing. From presence to absence.

I often see other women alone in the waiting room at the hospital and wonder how on earth they cope without the support that I have.

That isn’t to say I’ve become totally zen, in fact in many ways I find myself angrier, and far more impatient than I’ve ever been before.

I am hyper aware of the fact that I was, and still am, very lucky to be surrounded by friends and family and the most amazing, supportive partner. I often see other women alone in the waiting room at the hospital and wonder how on earth they cope without the support that I have. I’m angry that they are there alone, that they, and I, have to be there at all.

While the doctors and nurses I come into contact with are amazing, talented, passionate people, the system they work within is extremely difficult to navigate. The amount of time I have spent in the last year making phone calls to ensure that I get the right tests before each follow up, let alone the time spent in waiting rooms, traveling to and from the hospital, and in the appointments themselves is mind blowing.

I shudder to think how people who aren’t as well equipped to ask questions, to advocate for themselves and to push for information as I am cope with the constant confusion of a system that is clearly over-stretched and under-resourced. I have no idea how people who don’t have the luxury of flexible working hours and an understanding, supportive workplace, are able to make appointments that often run hours late, or are rescheduled at the last minute.

So a year later, I’m both very happy to be alive and well and able to swim and walk and lift weights and go to work - and very aware that death is never very far away. I’ve had the best and worst year of my life. It has been filled with pain and sadness and uncertainty but that uncertainty has also inspired some important changes. I’m no longer content to wait for things to happen, or to leave things unsaid.

So a year later, I’m both very happy to be alive and well and able to swim and walk and lift weights and go to work - and very aware that death is never very far away.

The threat of not having a future has motivated me to consider what I want out of life, and to realise that if I don’t actively pursue those things, there is a very real possibility they might not happen. The things I always hoped or even assumed would happen at some point in my life, like owning a home and having kids, are things that I am now spending time and effort and money making happen.

In series of somewhat unbelievable coincidences, the first of October marked one year without cancer, five years with my partner, and the day that we settled on our first home. I’m excited to keep making things happen, to keep building the life that I want, and to be around to celebrate another set of anniversaries this time next year. 

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