Bugger

Results of my scans last Friday:

Some evidence of abnormality in the scar tissue at the tumour site. The examining doctor has worked through the protocol and eliminated benign calcification. He suspects DCIS (ductal carcinoma in situ) and recommends another biopsy, with the warning that it will be ‘much more painful’ because local anaesthetic doesn’t work well on scar tissue.

I’ve decided to talk to my surgeon to see if I can have the biopsy done at the Mater Imaging service in Sydney rather than here on the Central Coast. I was unimpressed with the pathology on my original biopsies (and so were my doctors) and I’ve had nothing but good experiences with the Sydney team. Also, the doctor there has been seeing me since the beginning so she’ll know what she’s looking for. I couldn’t talk to my surgeon on Friday so I’ve had to leave a message and wait all weekend. Note to self; don’t organise tests on a Friday!

I’m also off to my GP today. I’ve asked that they send him a copy of the results so I’ll find out about the bone scan and what the various reports say. Do I also have arthritis in my SI joint? Certainly there’s something going on and Friday’s tests seem to have aggravated everything. I’m in considerable pain.

I’ve had a few entirely appropriate tears and I’m reminding myself that it looks like I don’t have metastatic cancer, which is a very good result. The potential for DCIS is not the end of the world, but how I wanted to hear that there was no sign of cancer! Back I go into limbo land while I wait for appointments and more tests and results.

Bugger.

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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.

Happy Anniversary Baby

It’s been twelve months since I had my first ever free mammogram with Breastscreen and discovered that I had triple negative breast cancer in my left breast. Three tumours quickly became four. My tumours were doubling in size every three weeks. It’s been quite a year!

Today has been emotional minestrone.

I am so grateful that my Breastscreen letter arrived when it did. So grateful to the staff and all of the wonderful people that have cared for me during the last year. I have a new (and profound) appreciation for the Australian medical system.

I feel like I’m in bonus time. These are the days I nearly didn’t have. Without a routine mammogram and the skill of the technician that performed it (she repositioned me. If she hadn’t we’d have missed it) I would be dead.

I had a few tears today.

I’m crying for all the pain, for all the days when I wanted to run, screaming, into the distance. I’m crying for all the things I had to put my poor body through in order to get here. I’m crying for the distress all of this has caused my family and my closest friends. I’m crying to let the sadness out.

I’m also so happy that it makes me cry. I know it seems bizarre but in may ways, the last twelve months have been one of the best years of my life. Here’s why.

1. I knew I was loved but I had no idea how greatly I was loved. I have never felt more loved than I have during this last year.

2. I knew my husband was a good man but I had no idea he was going to be such a hero. His ability to make me laugh through some of the bleakest days has been my light.

3. I knew my daughter was brave and resilient but I had no idea how strong she would be. In circumstances where other people would have curled up in a ball she pushed on, finished one degree and started another. She never traded on my illness or used it as a reason to walk away, even when some of her friends pulled out of university. Through all of it she’s loved and supported me as only a daughter can.

4. I knew my Mum was amazing but I had no idea how important her love and support would be to me. She’s so often turned up at exactly the right time. She’s simply refused to accept my early death as an option. She has been fierce in her belief that I would beat this. She still is. You really don’t want to mess with her when she gets like this.

5. I have found out who my friends are. The cliche is accurate. Some people backed away and I really don’t bear them any ill will. A small group stepped up and did everything they could to support me. Some of my friendships have become closer, stronger and more precious to me than my garden. Thank you to all of you.

6. I have made some beautiful new friends. Some of them are fellow cancer survivors, some are part of my medical team, some are members of my yoga class and some are people that I have met online. I’ve made more new friends in the last twelve months than in any other year of my life. Thank you to all of you.

7. I always knew I was strong but I had no idea I was this strong. It’s a good feeling.

8. I always knew I was optimistic by nature and inclined to be positive, but this last year has given me a deep appreciation of what a difference that makes to every aspect of my life.

9. I take much better care of myself than I used to. This is my body and I live in it. When it’s gone, so am I.

10. Yoga is not just my weekly exercise class any more. It’s as essential to my day as showering and eating. I have first hand experience of what a powerful vehicle it can be for helping my body and my mind to heal.

11. I have a very clear idea of what my values are and how to live my life in a way that’s consistent with those values. All of the trivia has fallen away. I don’t miss it. I know what really matters.

12. I am at peace with my own mortality. There’s something about people that have confronted their own death. Our eyes are wide open. We get it. Nobody gets out alive. This brings a kind of focus to my life that is possibly the greatest gift of a life threatening illness.

13. I have no unfinished business and no bucket list. I was very happy to discover this. It’s not that I don’t still have things that I would like to do but I don’t have any regrets or a list of things to tick off in order to justify my existence. I have already lived a full life and achieved things I am very proud of. If I had my time over I would probably leave everything exactly as it was, because all of it led to here and here is a really great place to be.

There will be a lot more tears before today is done. Happy tears. Sad tears. Tears for myself and for all of the other women going through all of the same emotions as each year rolls by. Tears for all the people recently diagnosed and all the people yet to find out they have cancer. I want them all to know that what’s ahead of them will be hard and painful and terrifying and anyone that tries to tell you otherwise is lying. But it might also be one of the best years of your life.

 

 

Going Nowhere Fast

My husband and I are overdue for a holiday. But where to go?

After considering several options we’re doing something new. We’re calling it ‘going nowhere fast’. Our plan is to have a holiday at home.

Our reasoning is partly financial. Holidays away can be very expensive. We’ve spent a lot of money on treatment over the last year and while we’re not exactly broke, we really can’t afford anything too flash. A lot of cancer affected families will be in the same budgetary boat. But that’s not the only reason.

I find travel stressful. Not the wide-eyed, palpitating heart kind of stressful. More the sort of annoyance you feel when you discover your hotel room is right above the 3.00am garbage collection or you’re stuck on a plane with a distressed baby. It’s not that I don’t understand the trade off. We’re prepared to put up with queues, time constraints, deadlines and being crowded into a metal tube with a few hundred other humans (including the poor babies) in order to get somewhere interesting. We’re also prepared to make trade offs in order to stay somewhere interesting, but there is an alternative.

There are obvious health benefits in staying at home. If you’re still in chemotherapy you’ll relate to the bacterial nightmare that accompanies something as mundane as a trip to the shops. For many in treatment, travel is just too risky. Even some of us out the other side continue to be dubious. I’m no longer checking my temperature nightly for early signs of neutropenia, but after everything my body has been through I really don’t want ‘Delhi belly’, an allergic reaction to foreign pollen or even a head cold.

If you’re concerned about the environment (and we are) then holidaying at home avoids all of those ‘carbon miles’ that travel usually requires. We’re also thinking that by cutting out the travel we can maximise the holiday. No long haul flights or eight hour drives this time. We’re already here.

If you have pets you’ll be familiar with all of the anxiety that accompanies holidaying and making sure your fur kids are well cared for. Two of our animals are very old an unlikely to survive another year. Leaving them in someone else’s care would be difficult and we would worry about them while we were away. Holidaying at home seems like a much better option. We’re also avoiding any concerns about being broken into while we’re away, because we won’t be away.

The challenge is to avoid just falling back into our day-to-day routine. To avoid this, we’ve made a list of the sorts of things we like to do when we go away on holiday. It looks like this:

Rest: holidays for us are all about taking it easy, doing things to our own schedule and not being rushed.

Reading books: We’ve always got a stack we both want to get to, and holidays are a great opportunity to do that.

Walking: We cover a lot of ground when we holiday. We particularly like bush walking and beach walking. We prefer to do our  sight seeing on foot.

Tourist Stuff: We’re not fond of crowds or queues but we usually visit at least some of the local tourist attractions.

Eating Out: Great restaurants with gourmet food, cheaper places with great Thai or Indian, tasty take away and a couple of kebabs on the beach. It’s all good.

Cooking: We usually cook most of our breakfasts when we travel and often a couple of our dinners too.

Learning: We like short courses in anything from cooking to aquaponics. We don’t always incorporate organised learning but we do like to learn about the history of the places we visit.

Something Exciting: On previous holidays we’ve gone zip lining, hang gliding, skiing, bike riding and rock wall climbing.

Something Indulgent: Massage, spa treatments or anything luxurious.

Of course, holidays are also about what we don’t do. So we’ve also got another list:

Housework: We usually do some basic tidying up wherever we are because we like to holiday in a nice environment, but we expect someone else to do the hard work, like cleaning bathrooms and floors.

Home maintenance: We can’t do it when we’re away so we won’t do it while we’re holidaying at home.

Opening mail: Same deal. If it can wait when we’re away it can wait while we holiday at home.

Answering the phone: We might need to be a bit flexible on this one but our plan is to let everything go through to message and to check once a day. If it’s not so important that we’d return the call from Europe then we won’t return it while we’re on holiday.

Screen time: We usually avoid television and computers when we holiday. I usually spend about fifteen minutes a day on Facebook, uploading photos and checking on my friends and family, but we’re otherwise away from our technology.

Wake to an alarm: We sleep until we wake up when we holiday. Too easy.

So far we’ve headed down to the local tourist information office and grabbed a selection of brochures and a copy of the monthly magazine that tells tourists what’s on. We’ve already discovered a lot of things we didn’t know about our local area. There’s a high ropes course with flying foxes that looks exciting and lighthouse with wonderful local guides that give tours. They’re both part of the plan. We’re also researching Trip Advisor for local restaurants we’ve never tried and local attractions we’ve never enjoyed.

We’ve found a locally produced booklet with all of the best bush walking in our area. We’ve got two sun lounges ready in the back yard. We’ve booked a cleaner to come at the start of the holiday so we don’t need to worry about the house work. We’ve set a budget, just as we would if we were travelling and we’re enjoying the idea that this holiday will cost us less and looks like being at least as much fun.

We’ve told our friends what we’re planning. Some of them are thinking of ‘holidaying’ with us, or joining us for part of it. I dream of future home-based holidays where we all hang out at the beach, eat together when the sun goes down and then head home all relaxed and happy. It sounds a lot like the sort of summer holiday we used to enjoy when we were kids and holidaying at home was just what we did.

I’ve already got the feeling that this won’t be the last time we holiday at home. When it comes right down to it, home is probably the place that I feel happiest and safest. It’s where I’m relaxed and comfortable in my own skin. It’s where I’m surrounded by things that are familiar and loved. What other destination can give me all of that?

Don’t get me wrong. I’m sure we’ll head off into the great unknown at some future date. I’m not opposed to travel. It’s just that right now, after all the treatment and the anxiety, I could really use a great big dose of the familiar and comforting things that come with a home based holiday. I’m going nowhere fast, and I plan on having a great time doing it.