Posted in Life, Photography

It’s not a headlight

I stopped listening to Enya some time ago, without making a conscious decision to do so. I guess I just didn’t need her anymore. Her music had seen me through a few challenging and difficult months, but I’m through them now and so no longer need the calming effect she had on me.

I woke up on Monday morning two weeks ago and immediately felt a different sort of energy in my body. It was a really interesting experience; I just knew that something had changed. My breast was still discoloured and peeling but the fatigue I’d been experiencing was gone. Just like that.

Then it was Easter and I had 10 days off work, travelled to Tumbarumba to visit family, then came home and faffed around home for the rest of the week. It was fabulous. Lots of time spent taking photos and deciding which ones to include in my developing portfolio; lots of time talking photography with Tim, discovering, then almost obsessively watching, Sean Tucker’s videos on YouTube; seeking out others’ work to draw inspiration from; doubting my own capacity as a photographer then coming across an image that causes me to catch my breath and think that maybe I am okay at this, then doubting myself again.

I went back to work on Monday and just about every colleague I ran into said how well I was looking. Many of them also commented on how fabulous my hair was looking, with one woman telling me I looked 400 years younger! All because I was wearing it down, rather than tied up to keep it off my face. There’s less grey when it’s down!

So spending time with Tim, my mother, sister,  brother, uncle, neice, nephew and great neice over Easter, spending time at home in the week after Easter, realising I don’t need to listen to Enya anymore, and being complimented on how good I’m looking has meant the last two weeks have been great.

Much, much greater though is the fact that I’m a grandmother again. Yes, grandson number 9 (aka Byron) is now 9 days old and I’m heading north at the end of the week to introduce myself to him. I’m feeling as excited as I did when my first grandson was born just over 20 years ago (and just in case you didn’t know me then, that’s VERY excited).

Tim and I had been talking just days before about how we have so many grandchildren, yet there are no double ups with birthdays. That is, until now. Byron was born on Tim’s birthday, making it an extra special day! At least I think that’s the way Tim’s viewing it.

The year so far has been difficult and challenging and confronting, but I feel like I’ve reached the end of the tunnel and I’m happy to announce that the light at the end of it isn’t the headlight of an oncoming train!

I’ve learnt to listen to my body, to rest when I needed to, to exercise when I can and not push myself too hard, to not be too bothered about what I eat, to give myself a break and know that if I didn’t get to something one day, I’d get to it another day. I’ve learnt to not feel guilty about taking the time I needed to get well, to let my body and mind recover from the trauma of surgery and treatment, and the fears and uncertainties that come with a cancer diagnosis.

And I’ve had reinforced for me how fortunate I am to be surrounded by incredibly generous family and friends who have done all they could to support me.

I am indeed blessed.

All I need to do now is sort out the pain in my chest caused by the scar tissue. Any ideas for how to do that?


Here are some of the photos I’ve been taking over the last few weeks … most of them are a long way out of my comfort zone, photographically speaking, but I’m enjoying the challenge.

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From Empire at Burnham Beeches
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Mmmm …
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Part of Melbourne Central I’d never seen before
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Nicki serving icecream
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Centre Place, Melbourne
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Saskia
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Honour Ave, Macedon

 

 

Posted in Life

Living though not loving the reality

I can distinctly remember a phone call I received from a close friend in late March 2012. I was on my way to Launceston to run a weekend class for my online students when my phone rang. My friend rang to tell me she’d discovered a lump in her breast and after some investigation had been diagnosed with breast cancer.

I cried all the way to Launceston and had to admit to my students that I was a bit distracted. Because my friend lived over 1500kms from me I didn’t see her live with the reality of surgery and the subsequent treatment. I saw her recently and almost seven years later she’s looking the best I’ve seen her in ages. But the intervening seven years have had their ups and downs and while she doesn’t talk much about her experience I know it wasn’t easy.

I’ve just received my own breast cancer diagnosis and the reality of the experience has hit me in a way I wasn’t at all prepared for. No one ‘expects’ to get breast cancer and I don’t imagine it’s anything but a shock to all those who hear those words but it was so far from my mind as a possibility that it’s taken a bit to be even able to say: I have breast cancer.

When I discovered the lump I decided not to tell anyone about it, not even Tim, my husband. He was going through a stressful time at work and didn’t need this added stress at home. I made an appointment to have an ultrasound but couldn’t get an appointment for four weeks. It was a long and difficult four weeks but with the help of a playlist I’d made some time earlier on Spotify – a playlist I’d called sleep songs which consisted mainly of Enya songs – I managed to keep my mind calm and my increasing stress and anxiety from Tim.

Or so I thought. He was worried about the times I’d come home from work and head upstairs to have a nap but figured that my gym sessions were wearing me out more than usual.

I went to work, tried to not think about it, not dwell on it, but every morning in the shower I was reminded of the lump’s presence. A little voice in my head told me to go to the doctor, but I was convinced the process was that you go to Breastscreen first and if they find anything a process is then put in place. Over time, the physical discomfort grew, adding to the emotional and mental discomfort I was feeling. It wasn’t pain, but the discomfort was certainly increasing.

I asked Tom, my trainer, if muscle went that low in your chest. No, he said, it doesn’t. He looked at me a moment then asked ‘are you getting it checked out?’ I nodded. ‘Have you told Tim?’ I shook my head. We talked about it sporadically at my twice-weekly sessions. It helped, but talking sporadically didn’t get it off my chest. Figuratively or literally.

Finally, the day came. I went to the Breastscreen appointment on a Friday afternoon, turning my phone off so Tim couldn’t locate me through find my friends. If you’ve already found a lump, we can’t do a mammogram I was told. You have to go to your doctor and she’ll organise a more thorough examination. Four weeks of waiting, I thought ruefully. If only I’d listened to that voice in my head.

Luckily my doctor is easy to get to see and I made an appointment for Monday afternoon. I raced out of my second meeting of the day, turned off my computer screens, grabbed my bag and headed to the appointment, pleased I have a level of independence at work that didn’t require me to account for my whereabouts every minute of the day.

My GP is quietly spoken and calm. Yes, she said. It’s a lump. I’ll make an appointment for you to have a mammogram and ultrasound. She called one imaging place. Friday? I shook my head. She called another place. Tomorrow at 9:30? Yes please. Booked.

When Tim came home that evening I told him. It was much, much harder than I thought it would be.

Next morning he finished his early morning meeting in half the allocated time – due to being super organised – and was able to come with me.

Mammogram.

Ultrasound.

She lingered for quite a while over the lump.

We were out of there by 10:30. We were quiet on the way home and waited nervously for the result, not sure how long that wait would be.

Two hours, as it turned out. My GP rang and said she was sorry but she had potentially bad news. The radiologist’s report indicated the lump was ‘suspicious’ and that further investigation was needed. She’d made an appointment with a breast specialist for Thursday – I liked that she was super organised. Take someone with you, she said. Two sets of ears are better than one.

It meant a day and a half of waiting, of excruciating uncertainty, of tears and hugs and it’ll be alrights. Of possibilities flooding my mind, of endless what ifs. None of it helpful, but all of it normal I guess.

My request for sick leave was approved and I could at least relax a little knowing I didn’t have to worry about work as well.

Off to meet Alison in the city to watch the taping of The Yearly with Charlie Pickering. It was a good distraction, but dinner afterwards was difficult. We went to our usual place, but the food tasted like sandpaper, and our dribbles of conversation always came back to what-ifs and wonderings.

Wednesday. I called Deb, my sister, in the morning. She told me she’d dreamt about me the previous night and her sleep was so disturbed she’d had to get up and read at 4am, something she never does. If I hadn’t called her, she would have called me. It’s comforting to know our connection is still so strong.

Tim found a patch of rainforest in the Otways and we packed our lunch and headed there for the day. We always find consolation in trees and these trees were particularly consoling as they were very similar to the deciduous beech trees we were so familiar with from our many years in Tasmania. Little fagus-like leaves scattered across the forest floor took me instantly back to Cradle Mountain and I felt some of the tension dissolve from my body.

We drove home via the Great Ocean Road, so I had the double delight of trees and ocean on the same day. It was beautiful, all those trees and all that ocean, but the anxiety didn’t ever go away and potential outcomes flitted through my mind all day.

Thursday. My appointment with the breast specialist was moved from 9:30 to 11:20 – not long in the scheme of things, but the delay felt much more like 24 hours than slightly less than 2. I was instantly put at ease when we met her though. She exuded confidence and compassion, and patiently answered our questions. If the result was positive, I would have surgery to remove the lump on January 15. I’d have an overnight stay in hospital, some weeks recovering, then further treatment starting six weeks later depending on the status of my receptors. A good outcome was to be oestrogen positive and HER2 negative. That would most likely mean radiotherapy but no chemo. 

But in the meantime, given the suspicious nature of the lump, I needed a biopsy – my super organised GP had organised that too, for 2pm that afternoon.

We wandered to a nearby cafe for lunch feeling more relieved than we’d felt in a few days. At least we knew what the process would be, even if we didn’t yet know the outcome. We had information – something objective and real to hold on to. And I had a glimmer of hope.

A mini-faint after the biopsy but otherwise it was a no fuss, though not at all pleasant, procedure. The nurses, Nina and Athena, were lovely. Very caring, one rubbing my ankles as the biopsy was being performed and the other noticing the pain on my face when the needle went beyond where the anaesthetic had reached. Two samples would have to do. A wet washer for my forehead, a fan to cool my body, the sheet off my feet, the blood pressure cuff wrapped around my arm, an icepack on my breast and after a few minutes all was right again. Athena went to get Tim and we went home to wait some more. The specialist had said she’d call on Monday with the result.

Friday. I stayed in bed for most of the day, Enya playing through my headphones, my mind not at all calm, but the music did help. Tim swapping the icepacks regularly – one warmed on me while the other cooled in the freezer. No phone call, no matter how desperate I was to hear. By the afternoon I’d convinced myself I was going to get the all clear.

Saturday. No run club for me this morning. No swelling or bruising from the biopsy though, so that was good. I’ve learnt to rest properly and not feel bad about spending time in bed. My two hospitalisations in the last two years have convinced me of the importance of rest for proper recovery. We had some last minute Christmas shopping to do, so slowly ambled down to the Hawthorn shops. Tim went for a coffee while I let my eyes wander over the books in Readings. My phone rang. It was the breast specialist. The report was in and she told me the result. It wasn’t what I’d wanted to hear. Did I want to come in to see her that afternoon? Yes please, I did, very much.

Again she was all compassion and confidence, answering our questions patiently. The surgery was booked in for the 15th. It meant I could still go to Tassie for Christmas, then to Queensland for the first week of January with one of my granddaughters to visit family.

I remember snatches of what she said as we drove home: my receptors are the ‘good’ ones, the lump is slow growing, it’s not life threatening, I won’t need a mastectomy, it’s treatable, I’ll have a radio oncologist and a medical oncologist, I’ll have a sentinel node biopsy meaning they put radioactive material into my chest and track it with a geiger counter to know which lymph nodes to remove, the second week of recovery will be worse than the first week, take as much time as you need/can to recover, hormone therapy, radiotherapy, possibly no chemo … if you’re going to get breast cancer, this is the one to get.

I feel fortunate.

And not.

At least I know now, the uncertainty is over. I know the process, I know that the cancer will be removed from my body, that I’ll have a good medical team providing excellent care, that I won’t lose my breast, that I may not lose my hair, that the cancer will be gone.

Fortunate.

I’m fitter and stronger than I’ve ever been in my life before, I have a tremendously supportive and capable husband, I have an excellent specialist, and I have a beautiful array of family and friends who will do what they can to care for me.

Sunday. I decide to tell the children. They all live in different states to me so that means five phone calls. It’s interesting how differently they reacted to the news. I let them know there’s a little bit of bad news but then some better news. None of them were expecting this particular piece of news. Ben makes me laugh by telling me about something he’d supposedly read in a medical journal last week. Daniel’s voice deepens with concern and I know to tell him as much information as possible. Rochelle is shocked into not being able to say very much at all. It’s hard for her to take in and she goes quiet in that way she does when she’s processing difficult information. Chase tells me he loves me through his tears. Emma offers to come over to support me through my recovery, cries when it’s time to say goodbye, and I hear ‘love you Mum’ before the phone hangs up.

I also tell Mum. It’s safe to say it came completely out of the blue for her too. She’s with my brother for Christmas and I’d warned him I was calling her with some news. He called me afterwards to let me know she’s okay and to get some more details. The telling makes it more and more real but also re-emphasises the positives. It’s not life-threatening. It’s slow growing. It’s treatable. The outcomes are good.

I am fortunate.

I am worn out by the telling and re-telling and admit to bouts of crying throughout the afternoon as my emotional energy dwindles.

It’s been a big week!

Stick with me over the coming weeks. I’m not sure if I’ll write more about this particular journey, but I just might. It might help me work through what I’m going through and it might help others too in the sense of coming to more clearly know it’s not all doom and gloom. I’m not actually sure about that part of it, but that’s my hope.

I’m fine – tired but otherwise fine – and I know I’m in good hands. I have a great medical team, good access to all the services I need, and just as importantly, if not more importantly, I’m surrounded by warm, caring and generous family and friends.

 

Posted in Learning, Life

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There is so much we can control in our lives; so much more we seek to control; and then there are things we simply have no control over.

It rains for days on end, rivers rise, towns are flooded, 300 cows are washed into the ocean.

A low pressure system gets lower, the wind increases, a hurricane/typhoon/cyclone strips trees of their bananas, houses of their roofs, power lines of their energy-carrying capacity.

A volcano spews lava down its mountainside causing mayhem to those at the foot of the mountain and those on flight paths above it.

We are reminded that there are some things we still cannot control; some things are bigger than us, they are beyond us: we are not as powerful as we thought we were. We don’t have dominion over the earth and all that lives on it.

As with the planet, so too with our bodies.

I have been raised to believe that I am in control of my body, in the same way that as thinking, intelligent, problem-solving people we think we are in control of the earth. Mind over matter. If you think you’re going to get sick, you will. To avoid getting sick, you just have to resist it; you have to be strong in mind and not give in to it.

I haven’t vomited in more than 30 years because I refuse to do so.

When I feel the first tinglings of a cold, I simply tell myself that I do not get sick, and most of the time that’s enough. I do not get sick. I do not give in to sickness.

When I feel pain in my body, I remind myself that my mind is stronger, and the pain dissipates.

Sickness is a weakness of the mind. Both of my parents hold firm to this view, and it has become part of the fabric of my being. (I have written about this attitude here.)

I felt this way until Tuesday 25th October at 3:34pm.

It was at that point that I came out of a meeting with Phil and Jo (two new colleagues) and noticed that I was shaking slightly. I felt a bit cold. I went back to my desk and for the next 47 minutes wrote an abstract for an article on workforce planning for beginning teachers. My fingers skittered across the keyboard in often uncontrollable ways, the shaking intensifying the longer I sat there. I tried deep breathing as a way of calming myself, in case the meeting had somehow agitated or excited me; I walked quickly to the toilet and back as a way of warming myself, in case it was the sitting that was making me cold. I didn’t think about getting/being sick … I was just cold. And shaking uncontrollably. And feeling slightly off my game.

One hour and forty seven minutes later I was in hospital. Admitted straight into emergency, even though the woman in the queue ahead of me had been told that she would be waiting at least an hour to be seen by a doctor.

I stayed in hospital for a week.

In that week, I had no control over what my body did, or of what was happening in my body. I couldn’t think my way out of my sickness. My mind and my body were two separate entities: one did not control the other.

Or rather, my mind did not control my body.

I lay in my hospital bed for a week and my mind was quiet (I am toying with using the word ‘blank’): it is usually busy narrating my life, having conversations with a host of others, skipping from thought to thought, involved in a rich array of experiences, ideas, images, connections. My inner life is integral to who I am and while I am quiet on the outside, on the inside my mind is loud and always on.

I realised, though, on my sixth day in hospital, that my mind hadn’t been on for the previous six days. I lay in my hospital bed under six blankets, sheet up to my chin, neatly tucked in, eyes shut against the light, and my mind was quiet. Nothing. No thoughts, no conversations, no ideas … quiet. I’d sleep (a lot) and when I was awake my mind was quiet.

My mind seemed to know that it had to be quiet so that my body could recover. It seemed, for the first time that I can remember, that my body was in charge, rather than me being in charge of it.

I am home from hospital now, and my mind has switched back on. But it’s now more willing to listen to my body. I lie here, in my own bed, with the blankets piled high, neatly tucked in, watching the clouds flit across the sky, and drift off to sleep, my mind on but quiet enough to allow my body to recover.

I am thankful that I am generally healthy: I had no list of medications to give to the doctors, no bouts of ill-health to share, certainly nothing like the 40 heart attacks and plethora of other ailments the woman in the next bed talked of. Even so, I was not in control. Something was happening to me, and I was unable to stop it.

On day 7, the day of my release from hospital, I thought about my/our lack of control. I had just as much control over the bugs wreaking havoc in my bloodstream, as we collectively do of controlling the force of the wind, the amount of rain that falls, or the size of the wave after an earthquake. We are reminded that there are some things we still cannot control; some things are bigger than us, they are beyond us: we are not as powerful as we thought we were.

It’s an unsettling thought, but allowing it is not a sign of weakness.