Posted in Life

Discombobulated

tim-goedhart-vnpTRdmtQ30-unsplash
Photo by Tim Goedhart on Unsplash

Wednesday. 9:38pm. I arrive home from photography class and Tim is home.

I hadn’t seen him since Sunday night – he’d left for Sydney at 5:00am on Monday and being a bad wife I hadn’t woken up to say goodbye.

He says, not as soon as I walk in the door you must realise, ‘you have an appointment with your breast surgeon on Monday’.

Oh.

My hands start to pick at non-existent fluff on the couch and I feel my insides begin to wobble like a poorly set jelly.

Are you okay, Tim asks.

I am discombobulated, I reply.

I don’t know the dictionary definition of that word but it feels like it fits. Discomforted, uneasy, thrown for a loop (is that even an expression?), discomposed.

I’d obviously made the appointment some time ago, but had forgotten. And in the being reminded of it I felt discombobulated.

Is it a check-up, Tim asks.

Yep, I reply.

Yep. It’s a check up. But it’s also a reminder, one I obviously hadn’t prepared myself for, of cancer. Of having had breast cancer earlier this year. Of having had surgery and radiotherapy treatment, and of being horrified that this had happened to me.

Yes, my breast is still discoloured and there’s a bruise-like stain where the lump was removed, and under my arm is still numb, and my breast hurts when I walk, so yes, there’s the constant reminders. But I can/have disassociated them from having had cancer. They’re just part of life now.

But seeing the breast surgeon – the reminder of that – is different somehow.

It’s not over.

This cancer – and I really don’t want to call it a journey – but this cancer thing isn’t over. No, it’s more than that. The fear is there because it happened in the first place. And more than fear, there’s a horror that it happened at all.

The fear/horror lurks somewhere and I’m never sure when it’s going to make itself known.

Driving to photography class for the first class back after the break, it made itself known. I’d continued attending class all through my treatment and I hadn’t realised there was an association in my head/body/gut between class and treatment, but anxiety crept over me as I headed to class that first day back. I was stuck in traffic and couldn’t pull over to settle myself, so I called my sister instead. She provided a good distraction.

I couldn’t go to work on Thursday – couldn’t settle, the fear again making itself known as I thought about the appointment with the breast surgeon. Deb noticed I was home and called me. Was I okay?

Not really.

I called the surgeon’s office on Friday to ask if the appointment was real – although I didn’t ask that particular question – and I was assured it was.

I remain discombobulated.

Too many questions for me to feel anything else.

I’m sure all will be settled on Monday.

That’s my hope at least.

 

 

 

Posted in Life

A new daily routine

Arrive. Hand over your patient card with a smile. Fine thanks, you reply to the smiling friendly receptionist who asks, somewhat unnecessarily you think, how you are. You take a seat as directed and wait for your name to be called by one of the radiotherapists.

Through the glass sliding door into the change room. Dress/top off. Bra off. Gown on. Stuff clothes into the green bag.

Carry it into the treatment room and put it on the chair. Hi. Good thanks. Name, date of birth, address.

On to the hard cold bed of the machine. Whoops, forgot to take your arms out of the gown again. Off the bed. Arms out, clutching the gown around you as you try to retain some control over exposing your body to strangers. Give that up and climb back on the cold hard bed of the machine with the gown unwrapped underneath you.

Whoops, forgot to take your glasses off. Off the bed, drop glasses into the green bag while clutching at your gown to hold it up. Back onto the bed.

Goggles on. Arms above your head and hold the bar. Legs up as they put the red cushion beneath your knees. Feeling thankful to have been doing abdominal exercises with Tom lately.

Lying there unable to see what’s going on, listening to the numbers flying between the two radiotherapists, feeling them mark your body, the cold of the tracing making you feel more exposed. Lie heavy as we move you Sharon. Left arm lifted into position, left hip shifted, ribs moved.

The cube is taped to your stomach – although you only know it’s a cube because you’ve heard them mention it. You can’t see anything because of the goggles.

The bed goes up and up – to shoulder height. You can’t see it because of the goggles but you can feel it from the way they make their final adjustments.

Sleeves of the gown are draped over your breasts.

All good Sharon. We’re out now.

A pause and you lie there watching the white square in the goggles.

A voice over the intercom. When you’re ready, a slow breath in for a short one. The yellow bar floats into the blue box and turns green. And breathe normally.

Silence.

When you’re ready, another slow breath in for a short one.

In

Hold

Great. Breathe normally.

The machine whirs and clicks like a cicada, the bed jolts into position and you see your spine and ribs on the screen in the goggles. The word pug seems to be repeated down your spine and you wonder what that’s about.

Okay Sharon. When you’re ready, a slow breath in for a long one.

The yellow bar turns green and you concentrate on keeping it there, only barely aware of the machine’s high pitched squeal.

Holding

Holding

Wondering if you can hold any longer. The green bar wobbles, bounces up and down gently within the blue box, and you clench your jaw with the effort of holding your breath.

Just when you think you can’t hold anymore, ‘And breathe normally’.

You can tell you’re struggling to bring your breathing under control by the way the yellow bar bounces around. You breathe out, all the way out, and hold. Your breath swoops into your body and the yellow bar flies up the screen. Hold. Breathe out. Just as you get your breathing under control ‘when you’re ready Sharon, a slow breath in for a long one’.

The machine whirs and spins, or at least that’s what you imagine is happening from the noises you can hear. You can’t see anything because of the goggles.

Holding

Holding

The green bar wobbles. You concentrate hard to keep it there.

Holding

You want to close your eyes but you can’t because the green bar might turn yellow. You think about how good you are at breathing. You remind yourself of your years of practice. That makes you want to laugh and the green bar wobbles and you get the giggles and it wobbles some more. You clench your jaw even tighter but some giggles escape along with some breath. Luckily the blue box is just wide enough to contain it. You tell yourself this is no time for jokes but then your other self tells you that if now isn’t a time for jokes then when is? And you argue with yourself while the machine squeals its high pitched squeal and your arms tingle from holding the bar above your head and the green bar bounces gently and ‘breathe normally Sharon’.

The screen in the goggles turns back into a white square. You lower your arms gently because they’re really hurting now and remove the goggles. I’ll take those says the radiotherapist as he comes back into the room. He lowers the bed and you sit up, lifting your legs over the red knee cushions, clutching your gown around you as you stand, stuffing your arms into the sleeves and covering your body to counteract the feeling of exposure. A too-late gesture that nevertheless makes you feel somewhat in control.

You put your glasses back on, pick up your bag, yes see you tomorrow and smile as you head to the change room. You rub MooGoo udder cream into your left breast, dress, unlock the change room door, push the green button to open the sliding glass door, wave at the receptionist, go through one more glass sliding door into the hospital corridor, turn left and make your way to the car for the 32 minute drive to work in peak hour traffic.

Another one down. Only eleven to go.

Yellow … this time unconnected from my breath
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.