Eagles

I decided to be an eagle when I was thirteen years old.

I grew up in a home surrounded by books. We read a lot of fantasy and science fiction. I loved stories about people that could transform themselves into animals, or inhabit the minds of animals. I also loved cats. I spent most of my lunch breaks in the first year of high school in the library, taking advantage of an amazing piece of new technology called a photo copier. I used my pocket money to make grainy black and white images of every kind of cat.

I got a part time job working at a coffee shop in Terrigal. A lot of the customers were rich people on holidays. They were very rude. They wanted the cinnamon sugar all the way to the edges of the toast. They wanted the chocolate powder on top of the coffee but not on the saucer. My boss would say “Rise above it.”

I read two books, one after the other. The first was about totems and native americans and how they gained wisdom from their totem animal. The second was about an eagle, written from the eagle’s point of view. Until then, I’d always thought that if I could be any animal I would be a leopard or a tiger. I decided, secretly, that my totem was an eagle.

If I was bullied at school I would rise above it. I was very fair skinned with dark hair and glasses, living in a part of the world where everyone lived on the beach and had suntans and blonde hair. I didn’t know it at the time, but I was also nerdy. I wasn’t badly bullied but I was bullied. Instead of responding like a rabbit in the headlights of an oncoming car I would imagine myself flying, high above the school to an eerie where I could look back and realise how tiny and insignificant the humans were. I wore strange clothes with my school uniform (friends remember the splendid multicoloured crocheted poncho). My glasses meant that I needed to turn my head to see properly, like an eagle.

I dreamt of flying. I would wake up with stiff shoulders. I would lay on my stomach and imagine huge wings on my back.

As I grew older I became better and better at seeing the big picture. It became part of what made me a valuable employee. As a police officer I was the one that found missed details at crime scenes, asked left-of-centre questions in interviews and found strategic ways to build a brief of evidence. When I moved into management I was the kind of leader that valued everyone’s contribution, I understood systems and how they interacted. I understood leverage and how a small change in one area could result in big changes in another. I knew the difference between real change and the statistical blip that so often gets used to declare operational success. People said I often had ‘a helicopter perspective’. Really it was the eagle.

The analogy I see used most often to describe the way people feel when they’re given a cancer diagnosis is the rabbit one. We jump about. We freeze. Our inability to act in the face of danger places us in the path of an oncoming vehicle. We stare back at death. If we don’t mobilise we die.

I did this. It lasted a couple of days. Then I remembered the eagle.

Lift up. Rise above it. Get some perspective. See things for what they really are.

Sometimes this includes recognising how tiny and insignificant I am. A lot of people don’t understand this way of thinking. In a world where we’re all encouraged to see ourselves as the masters of the universe it seems to be counter-productive. I find it helpful to remember that my life, all our lives, are tiny drops in the ocean of human history. I also find it helps me to remember that just a few streets away, or just next door, there’s another person dealing with another crisis whose also feeling like their world is collapsing. When I take a wider view, there are thousands in this town, millions in this country, hundreds of millions of people all over the world, dealing with their own problems (and many of them are, surprisingly, much worse than a cancer diagnosis).

Sometimes, having and eagle’s perspective includes recognising how powerful I am. I can soar. I can pull up from the everyday and look back at it. I can give it context and broader meaning. I can rise above it.

The ability to worry, and to worry about the impact of our worrying, and to worry about that, seems to be a particularly human trait. I’m sure all animals get anxious when they’re under threat, but they respond. Fight or flight, not sitting about ruminating and becoming less and less able to deal with the situation. We often dig our own holes and then sit in the bottom of them, pulling dirt back into the hole and complaining about the mud.

I’ve done this too.

My father died of bladder cancer in his late 50’s. He had been a local politician, highly regarded by many for his dedication to helping people. Years later they named a bridge after him. On the day the bridge opened a huge eagle flew all the way down Brisbane Water and circled above the bridge. My mother said that the eagle was my father.

I’ve never told her about my totem.

I know that life is going to keep throwing up circumstances that feel like the headlights of an oncoming truck. Because that’s life. I also know I have a choice. I can be a rabbit or an eagle. I just have to remember that I have the choice. If I can remember to think of eagles, and to imagine I am one, I can fly.

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Add This One Extra Thing to Your Breast Check

Two years ago today my first ever routine mammogram with BreastScreen found four triple negative tumours in my left breast.

Since then I’ve had chemotherapy (three tumours gone), surgery, radiation, surgery to remove what was probably a missed bit of the original cancer (from this we learnt it’s chemo and radiation resistant), and finally a double mastectomy.

Happy Mammoversary to me!

If my test results prompted you to go and have your breasts checked then it’s that time again. Book your appointment. Early detection saves lives. It certainly saved mine.

Here’s some information from BreastScreen:

– 1 in 8 women in NSW will develop breast cancer in their lifetime.

– 9 out of 10 women who develop breast cancer do not have a family history of breast cancer.

– Breast screening can find cancers before they can be felt or noticed – you have a better chance of survival when breast cancer is found early.

In Australia, BreastScreen target women aged 50-74 and provide a free screening mammogram every two years. If the mammogram detects anything, they also provide free followup, including ultrasound and biopsy if needed. The availability of screening varies in other countries and continues to be controversial. Statistically, it doesn’t seem to be reducing the incidence of breast cancer related deaths and there are concerns that many cases of DCIS (the lowest grade of cancer) would clear up on their own without intervention.

Having said that, I repeat my previous observation that statistics don’t mean much when you’re the person with the tumours. In my particular case, my tumours were doubling every two weeks. At the time of my testing there was little to warn me of the cancer (more on this later) and even though the tumours were towards the centre of my chest where there’s less breast tissue, they couldn’t be felt through the skin. Early detection might be statistically controversial but it definitely saved my life.

So my first piece of advice is to take advantage of free screening where it’s available, and to consider the benefits of paying for it where it’s not. You usually won’t pick up a tumour with regular home breast examination until it’s the size of a cherry. A mammogram can pick up something smaller than a pea. Catching cancer early can mean it’s treated before it’s had a chance to spread to your lymph nodes and this greatly improves your survival chances and the possible complications associated with lymph removal.

In addition to regular mammograms you should still check your breasts at home every month. Remember the phrase ‘doubling every two weeks’? Now, most breast cancers are not as aggressive as mine, but that’s no guarantee. Regular checking at home in between mammograms might also pick up a tumour.

There are lots of guides to home checking out there. Just google ‘breast examination’ for everything from check lists to photos to videos and find one you like.

Then add this step, which as far as I can tell is yet to make it into any list:

BEND FORWARD AND LOOK BACK

It can be difficult to judge changes in the size of your breasts by standing in front of a mirror. Most people have one larger than the other (I did) and it’s too easy to dismiss changes to the larger breast as just normal variation in size (I did this too). When I was finally sent for an MRI, which is taken lying face down with your breasts hanging in space, I was shocked at the obvious difference in size between my breasts! What I thought was the effect of a bit of weight gain and gravity was actually four tumours.

I was very, very lucky. A random request from BreastScreen saw me fronting up to the local clinic and my cancer was detected. I’ve always been one of those highly compliant people so I regularly examined my breasts for changes. I really did stand naked in front of the mirror with my hands on my waist and think ‘Well that’s old age setting in,” when I noticed that my larger breast looked to be sitting a bit lower.

So please consider adding this simple move to your regular self-examination. Bend forward at the waist and look back at your breasts. Pay attention to what the regular difference in size looks like. If you gain or lose weight it should affect both breasts evenly. If one breast shows a disproportionate increase in size then get it checked.

Never be concerned about getting a negative result and feeling like you’ve wasted anyone’s time. Even more importantly, never be so afraid of having cancer that you delay or avoid getting tested. The only thing worse than having breast cancer is having it and not knowing about it. This is one circumstance where ignorance is not bliss, it’s potentially fatal.

And tell everyone. Encourage your friends to check themselves regularly and take advantage of screening. Share your own experiences. Help spread the word. More and more women are surviving breast cancer and living long and happy lives. I think early detection is playing a big part in this.

Please feel free to share this blog post. We need to get the word out. Bend forward. Look back. It might just save your life.

Lists of things not to say to cancer patients and why to ignore them

Get well soon card

Yesterday this article appeared on my Facebook wall:

http://www.mindbodygreen.com/0-11076/5-things-you-should-never-say-to-people-with-cancer.html

It’s another list of things you apparently should never say to someone with cancer. It seemed to me like a pretty negative article for a site that’s usually accused of being all rainbows and unicorns.

I was going to comment, suggesting that the author was still angry about her treatment and might like to give it some time before she offers advice. Cancer is hard. Anger is inevitable. I was a bit shocked by some of the comments on the article, and on the Facebook post. This poor woman got slammed.

Every so often someone suggests to me that I could attract more readers by promoting my blog, rather than just letting it grow quietly in this hidden corner of the garden. It’s even been suggested by close friends that I start a Youtube channel and upload videos of myself giving advice. When you see the comments on an article like this one you’ll understand why I don’t. There are some nasty people out there.

Perhaps the article should be called “5 things you should never say to me if I have cancer”. The first mistake this author made was assuming to speak for all of us.

I once wrote something similar about what I did or didn’t want people to say to me. Regular followers of this blog will remember it. By the time I’d had recurrence and more surgery I was just grateful for the friends that stuck by me. They could say whatever they wanted to me!

I think one of the reasons that some people leave our lives is that they’ve become so anxious about saying the wrong thing. Articles like this one don’t help. So let me apologise for my previous advice about what not to say and replace it with the following.

THINGS IT MIGHT BE GOOD TO SAY TO SOMEONE WITH CANCER:

1. How are you feeling today?

This is preferable to a general ‘How are you?’ because it’s specific to the present and allows you to then offer help if needed.

2. What can I do to help?

Or just find something to do to help. I had two friends turn up and weed the garden. Other people dropped off frozen meals or drove me to treatment. It was all appreciated.

3. I don’t know what to say.

Just say it. Be honest. Be authentic. You’ll probably get a response like “Yeah, I know. Me neither.” and then you can have a conversation about something else.

4. What would you like to talk about?

Sometimes the answer will be ‘cancer’ and sometimes the answer will be ‘anything but cancer’ but people will appreciate you asking.

5. Would you like a cuddle?

We’re not contagious or toxic and affection can be wonderful for helping to cope with pain – just not if you’ve got a cold or flu because catching a cold can kill someone on chemo.

6. Please let me know if you want me to go. I won’t be offended.

Sometimes treatment is exhausting and we find company tiring.

7. You look great!

I think the protocol for this one is simple. If I’ve clearly gone to some effort with my appearance then tell me how great I look. That was the whole point of making all that effort. If I’m just hanging around the house in my track suit then probably best not to comment.

8. I love you.

This never gets old. And you don’t want to regret not saying it.

Most importantly, don’t abandon us if you can possibly avoid it. Some people are going to. They’ll find it too difficult or confronting. They’ll find it brings up memories of someone they loved that died of cancer. They’ll want to protect themselves from the possibility of having to weep at our funerals and comfort our loved ones so they’ll suddenly or gradually distance themselves.

Please know that it’s your friendship that matters, and our friendship for you includes always remembering that people sometimes make mistakes, and sometimes say things that might upset us, but if we remember their love for us it really doesn’t matter.

Friendship also means you might need to remember ┬áthat cancer will make us sad and angry and oversensitive and sometimes hard to be around. We might take offence at the smallest thing. It’s really our problem and not yours. Just hang in there and say whatever you like.

By all means say, “I understand that you’re upset but it’s not okay to talk to me like that.” Cancer does not give us licence to behave badly. It just gives you a reason to forgive us when we do.

Most of all, ignore the lists of things to say and things not to say. Some people hate any comment on their appearance, some people don’t want to be asked about help, some people might be angry that you don’t know what to say. Some won’t. We’re all individuals. Nobody speaks for all of us. That’s why my list includes the word ‘might’.

At some point there are no ‘wrong’ things to say to us. We’re just so happy that you’re still in our lives.

Lumps

Please don’t panic. I’m fine. My cancer is NOT back. I found a lump a few weeks ago and wrote this. My results say it’s basically a little bit of fat and scar tissue, rolled into a ball. Here’s the post I wrote at the time. I didn’t publish it because my daughter was right in the middle of preparing for exams and I wanted to avoid my health having the same impact on her marks that it did last year, when we got the news I was going to need a mastectomy.

It’s odd reading back over this because now that I know I have nothing to worry about, it seems like such an over-reaction. Hindsight has 20/20 vision. I thought I’d publish it now because it helps people to understand the kind of emotions we go through when we discover anything.

In a massive miscalculation, I ultimately confused what I thought was the date for the END of my daughter’s exams with the date for the BEGINNING of her exams. I also upset some friends by not telling them. Argh!

Anyway, here’s the original post from a few weeks ago:

* * * * * *

 

I’ve found a lump.

I’ve just passed the nine-months-since-surgery mark and had my scheduled visit with the radiation oncologist and everything was fine. He’s impressed by how well I look. He’s impressed with my mental state.

Why couldn’t I find a lump two weeks ago?

About three days ago I was in bed and massaging away at my lymphatic system. If you’ve had a mastectomy or lymph nodes removed this becomes part of your ritual. It’s a gentle process, like stroking a cat.

I have a bump on one of my ribs where I was hit by an aggressively thrown baseball in high school, thrown by a surreptitious bully. It wasn’t noticeable when I had breasts but now it protrudes slightly at the end of my original lumpectomy scar, close to my sternum. This is also the area where my original tumours appeared.

As I brushed my hand over this area something made me stop and investigate. I found a lump. It’s a tiny one, only about as big as a pea. At first I thought it was my rib protrusion but when I raise my arm the lump moves away from the bone.

I’ve been spending the last month or so fantasising about making it through a year without cancer. I haven’t done that yet. Last year the scans I insisted on at my 12 month anniversary showed calcification which turned out to be recurrence. I had my double mastectomy last August so I’ve been hoping to make that date with a clean bill of health. I’ve been taking really good care of my health, exercising, eating well, losing weight and doing whatever I reasonably could do to improve my chances.

When I first found the lump I climbed out of bed, turned on the light and checked the mirror. Yep. Lump. Or is it? It’s right where the scar ends. There’s a thing that happens after a mastectomy where your skin becomes attached to the underlying facia. It’s as if it’s been stuck down. The best way to understand this is to relax your hand and pinch up the skin on the back of it. This is how skin usually feels. You can pull it away and move it around. Now clench your fist and try to do the same thing. This is an approximation of what it feels like after surgery. Over time the skin gradually comes away from the facia and starts to feel like the rest of your skin. First it gets tighter and tighter and then it gets looser.

I decided it was possible that this is just a bit of scar tissue that has finally come adrift. Denial. I decided to just ignore it for a day and see if it went away.

The next day I told my husband about it. I did it in that self-depreciating let’s-not-worry-just-yet kind of way that anyone whose given bad news to someone they love will be familiar with. The surgeon’s advice on any concerns is to wait two weeks. I explained this.

It gets easier. The first time we did this there were tears. Now we each take a deep breath and shrug our shoulders. He’s reassuringly prosaic about it all. No need to panic without reason. No need to panic even if there is a reason. If it’s back then it’s local and that’s a good thing.

And it could be nothing.

Poke poke, prod prod. Yep. Lump. And maybe that’s another, smaller lump just under it. If I raise my arm over my head and feel under it……..Yep. Another lump.

Yesterday I decided I couldn’t wait two weeks. I booked an appointment with my doctor. Of course it’s the Friday before a long weekend so I won’t be able to see him until Tuesday. The curse of bad timing. It’s also two weeks until my daughter has law exams so I’m not telling her. I still feel enormous guilt over the impact my recurrence had on her marks last year. She needs high marks to get into clerkships and she needs clerkships to get into the firms she wants to work for. We are very close so this is hard.

Last year when she went overseas for a holiday she asked me not to tell her if anything happened with my health “…unless it’s so bad that I need to come home,” so I feel justified in holding off until I have any conclusive news.

And it might be nothing.

So why worry her unnecessarily.

Fortunately her studies will keep her at university this weekend. She’s cancelled plans to be here for lunch on Sunday. I’m hoping she doesn’t ring me. I know it will be very difficult to talk to her and not say anything about the lump, and she’ll probably pick up on it anyway.

We had dinner last night with a big group of close friends and I was worried that it might be difficult. Only one of them actually asked how I was travelling and I was honest without giving too much detail. He wished me well with it. Maybe people don’t ask because I look really well. Maybe they just don’t want to know. I understand. At our age just about everyone has some kind of health issue and we try to avoid those conversations where we all compare maladies. Another woman in our group is half way through radiation therapy for breast cancer. Everyone is fighting their own battles.

Fortunately we’ve got a busy weekend planned with lots of good friends to keep me busy and distracted. There’s curry to cook and tables to set and then the fun of conversation and company. There’s be cleaning up and the easy debrief that my husband and I enjoy after a big get-together. This will help. I need to organise something to do on Monday. Whatever it is, it can’t involve my Mum.

Mum turns 80 in about a week. I know what she doesn’t want for her birthday. She’s so sure of my recovery and longevity. She refuses to even contemplate the idea of recurrence, as if she can defeat my cancer by the sheer force of her conviction. Terrible timing. The results of any tests I have will be here in time for her birthday.

And it could be nothing.

Best not to worry her without reason.

Today is really the first day that it’s hit me. The cancer might be back. I revert to my reliable strategies for dealing with this kind of situation. I repeat the phrase, “It is what it is” and I calm myself down. I practice yoga. I breathe into that place where the cold, dark terror is accumulating. I consider the practical implications like whether or not to discuss this with the friend that’s going on a short holiday with me next week (yes) and whether or not panic (no).

And it might be nothing. Nothing! All this emotional energy. All this imagining possible future scenarios. All for nothing.

If the cancer is back I might be offered a platinum based chemotherapy treatment which would not be a bad thing. I wanted this treatment right back at the beginning, based on new research showing that triple negative cancer patients had better long term survival odds if they had carboplatin as neo-adjuvant (pre-surgical) treatment. At the time I was told that it was not part of the treatment protocol. Now it is. It might be that this is what my body needs to finally be cancer free.

It’s also the most aggressive form of chemotherapy.

Meanwhile I read about a vaccine for triple negative that’s about to start trials at the end of the year and targeted treatments where they use the tumour to develop a treatment that kills it. None of this is available to me.

I am plagued by bad timing.

It’s Saturday the 6th of June 2015 as I write this. I won’t be publishing it until I get my test results because my daughter and my mother both read my blog. I’m hoping by the time they read this we can all heave a sigh of relief.

Fear coils like a snake in the pit of my belly and whispers.