Butterflies

I’m due to have all my scans and tests done on Friday to see if I’m cancer free. I’ve got butterflies.

During the last year it’s struck me how similar the experience of breast cancer seems to be. There are entirely predictable reactions to predictable events. Getting anxious before tests is definitely one of them.

My first challenge was deciding which tests to have. My surgeon tells me that it’s no longer standard practice to routinely test everyone at twelve months and two years. The preference now is to wait for symptoms. I’d read comments about CT scans being dangerous and initially dismissed them as just another internet conspiracy theory, but it turns out that this one is true. Here’s a link to the Cancer Council page about them:

http://www.cancer.org.au/news/news-archive/ct-scans-and-cancer-risk.html

It confirms that there’s a cancer risk associated with CT scans.  It is not encouraging the read this: “It is calculated that more than 400 new cases of cancer each year in Australia could be attributable to diagnostic radiation. This can be compared to the estimated 114,000 Australians who get cancer each year.”

Wait. More than 400? How many more than? I’d really prefer a “less than” statistic. Still, it is a very effective test for finding cancer.

Here’s my problem. I was diagnosed with triple negative breast cancer. It makes up only 15% of all breast cancers and it’s more aggressive. It’s notorious for metastasising throughout the body. Mine was confined to my breast and technically ‘node negative’ although there were a few dead cells in one of the removed lymph nodes. Because all four of my tumours were close together in my left breast, my radiation oncologist thinks it’s unlikely that this cancer has figured out how to turn off the ‘flags’ that allow it to metastasise.

‘Unlikely’ and ‘likely’ have become the two words most used in cancer treatment. They are code for ‘There is still so much that we just don’t know.’

It’s possible (though unlikely) that my treatment has prompted the cancer to mutate into a more aggressive form. It’s also possible (though unlikely) that treatment missed a small tumour somewhere else in my body. What’s most likely is that I am tumour free.

I say ‘tumour free’ because I now know that everyone has cancerous cells circulating their body. Yes. Everyone. Most of the time our bodies find a way to prevent these mutated cells from forming tumours. Either something within the cell triggers cell death (this is called ‘apoptosis’) or the immune system recognises the cell as deformed and kills it.  In order to form a tumour, the cancer cell needs to avoid apoptosis and then trick the body into providing it with a blood supply (this is called ‘angiogenesis’). A lot of cancer research sensibly focuses on apoptosis and angiogenesis.

My other problem is that I no longer have any base line for what normal feels like. Whether you have breast conserving surgery or a mastectomy there’s a whole range of interesting changes to your body. In my case I have strange, electrical sensations in my breast along with occasional mild pains. The area under my arm feels tight and I need to remember to stretch it out every day. My breast tissue feels like an assortment of lumps and ridges wrapped in layer of skin. The breast care nurse has reassured me that all of this is completely normal and that it will take time for me to become familiar with my ‘new’ breast. In the mean time I have no idea what returning tumours would feel like. Come to think of it, the original four were completely undetectable on physical examination. So that’s worth considering too.

I’m also wondering what symptoms I should be on the look out for. I’ve developed some pretty impressive lower back pain since surgery, possibly due to walking oddly on my feet as I recover from chemotherapy induced peripheral neuropathy. It might also be arthritis. I sometimes get odd pains in my abdomen, particularly where my ovaries live. Are they having one last attempt at ovulation or is this what happens when you knock them out with chemotherapy? I variously have neck pain or headaches and I wake up every morning with aching hands. Some days my energy is great and some days the cats and I curl up together and sleep.

I’ve been giving my body all the help I can. The tumours might come back anyway.

My real concern is that the original tumours had a doubling rate of three weeks. (Yes, that does means that every three weeks my tumours doubled in size.) Frighteningly, I’m told this is ‘fairly aggressive’ and that it’s possible to have cancer that’s even more aggressive than this. In any case, it means that if I do develop new tumours, getting them early is essential to my survival.

On a more positive note, if I can stay tumour free for two years the odds of me getting tumours again drop considerably.

I’ve decided to have the full range of tests, including the CT scan. My plan is to have them this year and then to see how I feel next year. I expect I can be happy with a mammogram and an ultrasound along with a bone scan if all goes well over the next twelve months.

Meanwhile, I have to make it to Friday without working myself into a lather. This is a challenge. I love it when people tell me not to worry and that worry is irrational and that the test results will be what they will be and that it’s better to know than not to know so why am I nervous. Okay, that’s a lie. I really don’t love it at all. Why do people think that telling you something is irrational will help you to deal with it? Do they expect us to say “Oh of course, you’re right. What was I thinking?” So my first strategy in the lead up to tests is to keep it pretty much to myself and to only share how I’m feeling with people very close to me.

I also just accept that having anxious thoughts about these tests is normal and expected. When the thoughts occur I can observe them, acknowledge them and then let them go. They are only as powerful as I allow them to be. “Thank you, brain, for reminding me that I have an appointment on Friday but it’s not useful for me to panic about it. Off you go now.”

Distraction is the old standby for weeks like this and I like to include some of the things that I really enjoy. I had a massage yesterday with an oncology specialist and a visit the night before from an old friend. Today I’ll make some marmalade and if it’s not too cold, I’ll head out into the garden. Tomorrow is my regular day at the gym followed by coffee with friends from my yoga class. I’ll probably wander the mid year sales after that and buy myself something gorgeous that I don’t need.

I’m still doing yoga every day and that helps me to stay calm. On days when the fatigue hits it might only be five or ten minutes, but often that turns into half an hour or an hour. Yoga puts my mind back into my body and my body back into the present. It also reminds me to breathe. One of the most common side effects of anxiety is shallow breathing, or holding the breath. Even as I write this I’m noticing myself doing it. Sometimes all I need to do it so take a nice deep breath, hold it for a couple of seconds and then exhale.

My favourite meditation for weeks like this is all about feeling safe. I imagine myself in a safe place. I repeat the phrase “I am safe” in my mind. This works better for me than “I am calm” because I can’t feel calm unless I feel safe. Figuring out that anxiety for me is always a reaction to feeling unsafe has been a bit of a breakthrough. Try this: Close your eyes and take a really deep breath and then repeat the phrase “I am safe” three times. Seriously. Stop reading right now and give it a try.

Notice any difference?

Of course none of this prevents the butterflies. That sudden flutter in the abdomen will be familiar to anyone whose ever been due for half a day of climbing in and out of huge machines, drinking weird potions and having radioactive dye injected. When they strike I close my eyes and imagine they are real butterflies. I visualise them flying out of my body and spiralling around me, like a colourful whirlwind that lifts my anxiety as they all flutter away. Each of them carries a cancer cell. Off, away into the universe and out of my body. Thank you butterflies.

I’ve organised lunch with my family on Friday. My tests start at 8.45am so we should be done by noon. We’re going to a great local restaurant and I’m really looking forward to it. My Mum is coming. My daughter and her partner are arriving from Sydney. Having something to look forward to helps me to cope. It’s a bit like the runner’s trick of looking past the finish line.

I am safe. I am grateful. I am ready. Bring it on.

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2 thoughts on “Butterflies

  1. One year after you, to be precise, August 19, 2014, 5 days ago, I heard those dreaded words over the phone, “I’m sorry to have to tell you that it is breast cancer.” 5 days that feel like a month ago because on my first appointment I was told, “I’m sorry to have to tell you that your cancer is Triple Negative. This is not what we wanted.” I was beginning to feel sorry to have to tell this nurse-practitioner that I wanted her to stop talking! Thank God the next day’s visit with the surgeon (yesterday) was much more positive. Is there a fight ahead? Oh yes. But I once again can eat and bike and garden and appreciate beauty such as your writing!
    -Denise

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