Posted in Life

An update

Monday 14 January 2019

The alarm goes off at 6am and I haul myself out of bed knowing this will be my last gym session for a while. Deb walks down to the gym with me and heads off for a half hour walk while I walk up the stairs to the studiomy glutes still hurting from Friday’s session. I hope Tom will go a bit easy on me this morning. 

He doesn’t! The single leg presses that caused my muscles to complain vociferously over the weekend were on today’s agenda as were the bench presses that caused me to know my chest muscles had been working too. Tom says the muscle ache will be a good distraction from other aches I might have after my surgery. After the stretches, we high five as usual then he gives me a hug and assures me I’ll be fine.

This afternoon I’m due to have a procedure before my surgery tomorrow – and I have to admit to not looking forward to it. We need a distraction, so head into the NGV to wander through the Escher x nendo Between Two Worlds exhibition. It’s a fabulous way to spend a few hours and provides all the distraction we need.

The procedure I have is to prepare for a sentinel node biopsy. Radioactive material is injected into my chest – it stings and then goes on hurting for a while – and after some time to allow the radioactive material to travel around a bit, a gamma camera helps identify the lymph nodes the radioactive material has travelled to. It’s so the surgeon knows which lymph nodes to remove and means she can remove fewer than if I don’t have this procedure.

It’s over in about 40 minutes and we head home to prepare for tomorrow. Not that there’s really much preparation I need to do but there’s a bag to pack, some functional fashion to talk with Deb, conversations to have with the kids, and an unexpected though completely lovely visit from my oldest friend Michelle and her daughter Grace who’d road-tripped from Sydney to be able to pop in to see me.

I sleep well, considering.

Tuesday 15 January

Tim and I arrive at the hospital at 7:20 and make our way to DOSA (Day of Surgery Admissions) on Level 2. I complete the bits of paperwork still outstanding, pay the excess fee, tie a name tag onto my bag and am invited to take a seat in the waiting area. It’s already filling up – mostly women, mostly older than me, mostly with female companions, mostly looking as though they’re trying hard to keep calm.

My name is called and Tim and I follow Wendy into the next waiting area. Wendy propels me into a cubicle, lays out knickers (the comfiest ones I’ve ever worn), socks (orange with non-slip dots), a gown (the opening at the back please), a dressing gown and a large brown paper bag to put my own clothes and shoes into. I change and Wendy puts my bag into a locker indicating there’ll be a bit more of a wait. A young pharmacist comes to ask about my medications and I feel a bit out of place as all the others waiting for surgery are handing over boxes and boxes of medications and I have none to mention, apart from Vitamin D says Tim, three each day (I am very deficient!).

Wendy returns and we follow her into an office where I mostly answer ‘no’ to her questions: diabetes? blood pressure? heart problems? stroke? liver disease? on and on …

She rolls white compression tights up my legs to my knees, wraps some tape around my wedding ring, puts a name tag on my glasses and assures me it won’t be too much longer. We head back to the waiting area and before too long Maria calls my name, suggests a visit to the loo, then leads us to a bed in a curtained cubicle.

Maria wraps stiff white ‘sequentials’ around my legs and hooks them up to a machine. They fill with air and massage my legs – one leg at a time – helping to prevent DVT. She also puts a bear hug blanket on me and hooks up the machine so it blows warm air over me. It’s good for keeping veins open and so is useful for surgery. She puts a white hat on me – the type worn in the food industry – and my outfit is complete.

Orange socks and sequentials …

I am calm, my hands crossed loosely over my tummy. Jenny, the anaesthetist’s assistant introduces herself to us, and goes through some more information, asking if I’ve eaten or drunk anything since midnight (no, but I could go a cup of tea right about now). She doesn’t offer one, just unplugs the warm air blower, tells Tim it’s time to kiss me goodbye and wheels me down white corridors until we come to a waiting room outside the operating theatre.

We chat for a while, the cold starting to creep through the blankets piled on me, and eventually Jenny heads into the theatre leaving me alone for the first time. I hear someone call out to Sage and her name is called so often I imagine they’re having trouble waking her, or that she’s waking up in a way that is not ideal. I decide I don’t want to be here.

The surgeon’s assistant comes in and introduces herself to me – the only one of the team not named Penny or Jenny – and then Jenny, the surgeon, comes in to make sure I’m clear about what’s happening. She draws on my breast, just to make sure she has the right one, and tells me it won’t be too long now. After she leaves, I suppress the urge to jump off the table and slink away. I slow my breathing and try to quiet my mind.

Finally, Penny, the anaesthetist, comes in, asks about my previous history of general anaesthetic (once, 30-something years ago), and proceeds to find a vein on the back of my right hand. The cannula goes in easily and relatively painlessly, and I’m wheeled into the operating theatre. I decide I don’t need to see what it looks like, so keep my eyes closed. I’m instructed to shimmy over to the other bed, and manage to do that while keeping my eyes mostly shut.

As I lie there I begin to shake – a combination of cold and nerves. Again, I try to slow my breathing and quieten my mind but it’s getting more and more difficult. I just want to go home.

Assistant Jenny places a mask over my mouth and nose while Penny floods my vein with something. They keep talking to me, telling me they’ll take good care of me, that it’ll be fine and I lie there thinking ‘it’s not working. I’m still awake. Please don’t start yet. I can still hear you.’

Someone gently calls my name and asks me to open my eyes so she knows I’m awake. I flutter them open, then close them again, wanting to go back to sleep. Do you have any pain? Yes, I manage, not sure if I say yes or just nod. I am heavy with sleep and lie still, wanting desperately to return to sleep. Any pain? Yes. I doze some more. Any pain? Yes. Out of 10? Eight. I swallow the pill they give me.

Time whirls past and the weight of sleep slowly eases. I am wheeled to a ward where Tim and Deb are waiting for me.

Observations are all good

I admit to not remembering much of the afternoon although I do remember Alison’s visit. She perches on the edge of the bed and makes inappropriate conversation, lightening the mood.

Nurse Charlene comes in to administer IV antibiotics. It’s more painful than anything else I’ve experienced over the last few days. Painful isn’t really the right word. Excruciating is more like it. At midnight another nurse comes in to administer the next dose. The cannula is blocked and flushing it is not a pleasant experience. Liquid runs over my hand and I’m not convinced the antibiotic makes it into my vein. She re-bandages it, and leaves me to go back to sleep.

Wednesday 16 January 

Obs. All good.

Breakfast. A bowl of porridge.

Jenny, the surgeon, checks on me and inspects my bandages. All good. Sutures will come out next Tuesday.

Nurse Charlene is back to administer the final dose of IV antibiotics. I cannot handle the pain of the flushing and she says she’ll have to move the cannula to be able to administer the antibiotic. My face screws up with the pain, and she hurries out to find the doctor. Minutes later she’s back and removes the cannula. Apparently, I don’t need the final dose.

Bronwyn, the breast care nurse, pops in to give me some information and a cushion – an important item for my recovery.

Sarah, the physio, provides me with an exercise schedule and stresses the importance of listening to my body over the next few weeks.

Tim has arrived so there’s nothing else for it but to get dressed and go home.

All that’s left to deal with this week is recovering from surgery. That’s easy with the amount of support I have. What’s tough is ensuring I go easy on myself and not rush too quickly to doing things.

Thanks for all the good wishes and messages of support. It means a lot!

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 Life

A personal plea …

Dear follower,

I don’t usually use my blog to promote causes, but this one is a little different, and one I feel passionate about.

This is to let you know that I’m participating in the Run Melbourne 5km event https://runmelbourne2014.everydayhero.com/au/sharon-8  and will be proudly supporting The Shake It Up Australia Foundation to raise funds to find a cure for Parkinson’s disease, in this life time.

Every day 30 people in Australia are diagnosed with Parkinson’s, and as many as 10% of these people are under the age of 40. This disease currently has no known cure, however through investment in research targeted at finding a cure Shake It Up Australia Foundation and their partner The Michael J Fox Foundation For Medical Research offer hope.

Helping to find a cure for Parkinson’s is something very dear to my heart and I’d really appreciate your support to help me reach my fundraising goal for this great cause.

Here are some ways you can personally help me right now

  • Share my fundraising page with your friends and family
  • Look out for regular updates here to keep abreast of my progress.

Thank you for your support. I really do appreciate it,

Sharon