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.