Posted in Life

The next phase

I woke this morning to Tim getting ready for a bike ride. Did I want to go? No, not today thanks. After he left, my mind and body had a bit of a tussle: get up and go for a walk! No, I don’t have enough energy.

As I’m now listening to my body I got up and went for a walk. And it felt good. It was a lovely 22C, ahead of an expected top of 39C, the sky was blue, and the sun was warm on my shoulders. My feet led me up the hill of our street and then up the slightly steeper hill of Glenferrie Rd, which isn’t the way I would’ve gone if I’d given it any thought but my body was obviously ready for a little extra challenge.

It’s been almost three weeks since my surgery and my body is healing well. The swelling has gone down, with only one isolated spot still swollen but even that is reducing each day. The numb patch under my arm is still numb but that’s not likely to change apparently, and the itching has finally (thankfully)  stopped. I’m back at the gym for my twice-weekly personal training sessions and this coming week I’ll re-introduce upper body work to my workouts. So no problems with my physical recovery.

And I was feeling good about that. Well, really, why wouldn’t I feel good? My body is recovering strength and soon I’ll be back into training for the runs I’m keen to do this year. I am, after all, a runner. So I’m feeling good physically.

Not so much emotionally it has to be said. My oncology appointments on Friday discombobulated me. They reminded me that surgery wasn’t the end of this particular life episode. I haven’t wanted this to be a big deal – I had a lump that needed to be removed, much like an appendix or gall bladder. It’s been removed and I’m recovered, as someone who’s had their appendix or gall bladder removed recovers and then goes back to their regular life.

At the moment though, it does feel like a big deal. Hopefully the bigness of the deal will decrease over time, but I’m trying to be honest here and sort through what I’m feeling and that’s like this is a big deal. Or at least a bigger deal than I wanted it to be.

Meeting my radio oncologist and my medical oncologist makes it clear that I can’t go back to my regular life – at least not just yet. If I’d had my appendix or gall bladder removed I wouldn’t have to worry about my appendix or gall bladder ever again; appendicitis isn’t ever going to pop up in another part of my body, or even in the same part. Mind you, I’ve not had my appendix out, so what would I know? 

What I do know is that the analogy I’ve been using to help keep me grounded – that this is just like having my appendix out – isn’t working for me at the moment. And so the deal is somehow bigger.

Karen, my radio oncologist, is lovely. She has extensive notes about me but asks me to tell my story in my own words. I resist the urge to start with being born in Sydney, in March 19**, the second daughter of Noel and Sheila Pittaway ….

Karen is compassionate and patient, working through the information in a structured and rational way. She explains why I need treatment, what the treatment entails, how it’s delivered and possible side effects. There are possible side effects for the short term, the medium term and the long term. She draws diagrams to help explain the ‘how’ and answers our questions. We talk dates and it’s likely my four weeks of radio therapy will start on February 18 meaning I’ll be done by mid-March. I might get red, irritated and blistered skin, my breast might swell and change colour, and I might get tired. I might get all, some or none of these side effects. If I do get any of them it’ll most likely be in the final week or two of treatment and then continue for a week or two after treatment.

I sign the consent form and Karen says she’ll see me on February 11 for the planning consultation.

Lara, my medical oncologist, is just as lovely. She’s quiet and kind and works through the information in a rational and structured way. She explains why I need endocrine (hormone) therapy, what it entails (a pill every day for five years), possible side effects, and when I should start treatment (after radio therapy). The side effects are minimal: hot flashes, hair thinning, crankiness, and joint stiffness (which exercise can help alleviate). Lara gives me a prescription and says she’ll see me six weeks after I start the medication.

I know I’m in good hands but I’m still discombobulated. My analogy is ripping apart and the bigness of this particular deal is reasserting itself into my consciousness. I try not to let it, but all I want to do when we get home is to crawl into bed and pull the blankets over my head. I resist this urge, telling myself that it isn’t such a big deal: it’s four weeks of radio therapy then five years of taking a pill every day and that’s all. That’s it.

It isn’t a big deal.

I don’t/can’t/won’t believe it. It is a big deal.

I lie on the couch in my favourite PJs and Tim lays a blanket over me. It takes over two hours for my body to warm up. I eventually emerge from my cave but my ambivalence remains.

Is it a big deal? Should it be?

At the moment it is to me.

And in this situation there are no ‘shoulds’.

Photographing flowers is good therapy

 

 

Posted in Life

Mind and body

Thursday 24 January 2019

Body and mind – mind and body. It’s a duality that’s been debated by philosophers and scientists for centuries. In many cultures the body and the mind are seen as separate entities … our bodies are public, perceptible by others whereas our minds are private and something we can choose to share. It allows for all kinds of beliefs and behaviours. I won’t go into the science or philosophy of it all, but our belief in this dualism impacts the way we live our lives. And that’s of interest to me, particularly at this point in time.

Today particularly I’ve felt in the centre of a battlefield with both my mind and my body fighting for the upper hand.

I have to admit to not having had a good day today. I stayed in bed till 5pm, only emerging because I felt sorry for Emma, who I’d left on her own all day. Enya soothed me through my headphones, and I alternatively read Richard Glover’s The land before avocado and dozed.

On Tuesday I’d had my stitches removed, and I’m not sure if it was the sticky stuff on the tape or something else, but my skin was so irritated and itchy it was driving me to distraction. The heat didn’t help and I was beyond irritated, irritating and irritable with the itchiness.

My surgeon had told me that this week would be tougher – more pain (yep), redness and swelling (yep and yep), fluid buildup (yep) and with a higher risk of infection (gosh I hope not).

I’d been doing more and more each day – walking further, staying awake longer, refusing pain killers before bed, even when I was groaning in pain. I even went to the gym yesterday – mostly to determine a plan for my return but I managed four and a half minutes on the exercise bike before my head started to spin.

My mind was insisting that my body recover as quickly as possible.

Source: https://weheartit.com/entry/66627527

 

But my body wasn’t having any of it. And so I felt caught in the middle. My mind was frustrated that I was still in pain, not back to normal, that I was sitting around having others bring me cups of tea and breakfast, lunch and dinner, and doing all the chores.

And then, early this morning I remembered what the physio and the breast care nurse had said:

Listen to your body.

My body was saying ‘stop. Just stop. I need a break’ and finally my mind listened.

I have to admit that I feel so much better for the rest. While the itchiness has subsided, the redness, swelling and pain hasn’t, but I feel I can cope so much better because I finally remembered to listen to my body.

My mind finally believed!

 

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 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.