radiotherapy – Musings from the cold

Celebration …

Posted on March 27, 2019November 24, 2019 by Sharon

I finished my radio therapy treatment on Thursday last week. The final four treatments were ‘booster’ treatments, which I found quite terrifying. No goggles, no holding my breath, just a really big machine zapping a very targeted part of me at close quarters. I almost asked for the goggles back, then realised I could just shut my eyes to avoid being confronted by the bigness, closeness and scariness of the machine.

Each treatment was over quickly though and Emma would drive me home while I felt a little more shell shocked each time. I have no idea what I would’ve done without her.

It was fabulous to have Emma stay with us (Photo by Tim)

I’d somehow forgotten about, or perhaps thought I was immune to, the side-effects though. Apart, of course, from fatigue.

I can’t say I wasn’t warned. Karen, my radio oncologist, told me about the potential for them, as did the breast care nurses, and others I’ve spoken with who have gone through similar treatment. I even wrote about them on this very blog a few weeks ago, yet I was still caught off-guard.

A sunburn type response.

Redness.

Swelling.

Peeling.

Pain.

I wrote in that earlier post: ‘I might get all of these, some of them, or none.’

I got the jackpot – all of them.

The good news is that they probably won’t last more than a week or two (or maybe three or four).

And the other good news is that I’ve had company since halfway through my treatment – others to share my daily annoyances with. Probably not good news for them, but I’ve appreciated having Emma (who stayed an extra week with me) and now Deb to whinge to.

I also had the foresight to take some sick leave and I’m very pleased I did. I couldn’t have coped with going to work on top of everything.

But this is getting boring now. And if I’m bored by it all, I’m sure you are too. So I’m not going to write anymore about it.

****
On Sunday, Alison (aka Number 6) decided to spend the day with us, celebrating ‘me’ – my birthday earlier in the month and the end of my treatment.

Alison knows that I love to photograph flowers and so we went to the Queen Vic Market and bought loads: carnations, daisies, bluegum leaves, wheat that had been spray painted, and others I have no names for.

The outside table was strewn with flowers and leaves and twine and special scissors for cutting the stems and ribbon; palings from a fallen-down fence were put to good use as a backdrop and a surface; a tabletop was perched on the backs of kitchen chairs so we could shoot against the white wall under the clothes line; a shiny black tile and a sheet of black cardboard was set up in the kitchen as a different kind of photographic space … in amongst this chaotic space Alison managed to create a beautiful bouquet, and a delicious dinner.

It was a fabulous way to spend an afternoon!

These are beautiful even though I don’t know what they’re called

These are just some of the shots I took – and if the wind stops I might take even more.

Thanks Alison! Let’s do it again some time.

Life

The final countdown …

Posted on March 17, 2019March 18, 2019 by Sharon

I’ve had fifteen radiotherapy treatments so far and fatigue has hit me hard.

It’s a feeling of total energy loss and of heaviness in my body. Apparently, fatigue is one of the most common side effects of cancer and cancer treatment and can stick around for weeks and months after treatment.

It doesn’t affect me all the time – at the moment, for instance, I have some energy (mind you, I just ate dinner) – but at other times of the day it hits and I’m left feeling empty and almost unable to move.

It’s weird though because resting doesn’t always help, so it’s not like I should quit doing exercise or should start laying around all day watching Netflix – as enticing as that sometimes sounds. In fact, that might make it worse. In the spirit of not resting too much, I walked the 1km to the local shops yesterday morning and found it very difficult to walk the 1km home. It was a very slow trip back.

Fatigue hasn’t only affected me physically. I’ve found it’s taken its toll on me emotionally and mentally as well. I’m exhausted after an hour and a half at work, I can’t concentrate on tasks that would normally be unproblematic, I’m more short-tempered than usual, and I’ve been having trouble sleeping. So much so that my GP prescribed sleeping tablets. I’m so desperate for a good night’s sleep I’m even taking them.

Fatigue isn’t the only side effect of my radiotherapy treatment but it’s certainly the one having the most impact on me at the moment.

Information the Cancer Council’s published on coping with fatigue tells me to exercise if I can, and if I’m already used to exercise, to take it easier than normal.

My GP told me on Thursday to only go to the gym if I find it enjoyable, to not push myself, and only ‘do nurturing things’ there. I made sure to tell Tom, my trainer, that that’s what my GP had said, and on Friday I had a very nurturing workout. No deadlifts, all weights reduced, and I didn’t have to go as fast on the bike or cross-trainer as usual. I have to say, I did feel better afterwards.

The Cancer Council information also advises to ‘do the things you need and want to do. If you have people around you who are able and willing, let them take on some of your usual activities’. As I have no family in Melbourne (apart from Alison), this seemed to be an impossibility. That’s not to say Tim isn’t fantastic, but I can’t rely on him for everything.

Fortunately for me, Emma, my youngest daughter, John, her husband, and Lincoln, their 3 year old son were prepared to come to Melbourne to help us out. Emma has driven around Melbourne like she’s done it all her life – driving me to work, to treatment, to the class I’m taking two nights a week in the city and wherever else I’ve needed to go. Between her and John they’ve made endless cups of tea, packed and unpacked the dishwasher countless times, vacuumed, put washing on the line and taken it in, replaced the battery in Tim’s scooter, gardened, been on bin and recycling duty: in general, been a huge support.

I have to admit to being worried about having an energetic 3 year old around, but Lincoln has been a true delight. He’s such a sweet boy and loves stories, telling them and reading them. His new favourite is Pete the Cat, but he’s also partial to Russell the Sheep and Giraffes can’t Dance. We read stories in my bed the other evening before dinner and he fell asleep to the soothing sound of my voice.

John and Lincoln went home to Tassie yesterday, while Emma decided to stay for another week to continuing supporting me in my final week of treatment.

Yes, only one week to go and then I’m done with radiotherapy!

It’s been a confronting, challenging journey but I’m blessed to have so much support.

Let the final countdown begin!

Love spending time with this gorgeous boy!

Life

It’s my birthday …

Posted on March 8, 2019 by Sharon

… and I’ll deadlift if I want to!

Here’s me in action at the gym this morning*.

I reckon Tom will make this heavier next time!

I don’t usually get this visually visible on my blog, but I saw a post by my cousin Jen this morning on Facebook where she told her friends that I was ‘awesome’. It made me stop and think why someone would say that about me. Seeing yourself through someone else’s eyes can be a useful exercise and I suddenly felt proud of myself for continuing with my personal training sessions while going through radiotherapy treatment. And so I asked Tom (my personal trainer) to take a photo of me this morning because I wanted a record of this.

Plus it’s an interesting looking contraption!

Apart from being my birthday, it’s also International Women’s Day today and as I celebrate I feel blessed to have so many awesome women in my life. They continually inspire me and support me and I know my life would be less rich without them.

*****

Thanks to Tom, my trainer, for taking the photos.

Just one note Tom. Josh gave me flowers on my birthday last year. Just sayin’ …

Life

A new daily routine

Posted on March 5, 2019 by Sharon

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.

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

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

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

Life

Two down, 17 to go

Posted on February 23, 2019March 5, 2019 by Sharon

I cried in the shower this morning.

Not because I was hurting from falling over this morning playing scarecrows and face planting into the oval.

Not because my face hurts from my glasses bashing into my cheekbone during said face plant.

Not because my hands hurt from trying to stop my face plowing into the ground, or my hip or my knee.

I cried because I was dwelling on a couple of conversations I’ve had recently and the hurt they’ve caused me.

But I want to backtrack a little first.

On Thursday morning we made it to the oncology centre with minutes to spare before my first treatment. The traffic had been worse than we’d thought it was going to be at that time of the day.

I handed over my patient card to the receptionist who kindly acknowledged that it was my first time, then asked if I could move the time of my second treatment to later in the afternoon. That suited me better so I had no hesitation saying yes, that’s fine.

It wasn’t long before one of the radiotherapists called my name, took me on a tour of the, admittedly not huge, facility. Here’s the change room, there’s the loo, here’s the control room, and here’s the room you’ll be in to have treatment. There were red lines from the lasers all over the walls. I changed, put the blue gown on, put my clothes in the green bag that I was to bring to each treatment (along with the gown), and went back into the room with the big machine in it.

I lay on the bed, took off my glasses, put on the goggles, put my arms above my head and held onto the handlebars and then was instructed to ‘lie heavy. I need to move your arm, but let me do it’ said the radio therapist. My arm in position, my hip moved slightly to the right, numbers and positions flying between the two radio therapists, more marks on my body, a cube to measure my breathing taped to my stomach, the sleeves of the gown crossed over my breasts and it was time to start.

They left the room and I was instructed to take a long slow breath in, hold it for a moment, then out again. On the screen in my goggles appeared an x-ray of my spine and ribs. I wish I knew how to read it so I could assure myself that all was in order.

The x-ray disappeared and the yellow line and blue box reappeared. Take a long slow breath in for me Sharon and hold it. It’ll be a long one this time.

I moved the yellow line into the blue box, turning the line green, then concentrated really hard to keep it there for what felt like a really (really) long time.

And breathe normally again Sharon.

The line became yellow again as I exhaled, then ‘one more long slow deep breath Sharon and hold’.

I began to feel a little panicky the second time. It felt quite claustrophobic to be honest. What if I couldn’t hold my breath for as long as I was required to? The now green line bobbed up and down slightly as I concentrated on holding the green line within the box.

And breathe normally again Sharon. That’s it, we’re all done.

Goggles off, arms down, off the table, shoes on, glasses on, head off to the change room. The radio therapists’ friendly ‘see you tomorrow Sharon’ stopped me as I went through the curtain. Oh yes, I’ll be doing this again tomorrow … and for another 17 weekdays after that. It feels different knowing that it’s not a once off scan. This is real. This is really happening.

Friday … second treatment. Any questions? What happens if I can’t hold my breath for as long as I need to? That’s okay. The machine is clever enough to turn off and then we just pick it up where we left off when you’re ready.

Knowing that certainly eased my mind.

See you on Monday!

*****

And now back to the real issue for me this morning: at least you’re not dying. At least you’re assured of a good outcome. At least you’re not 70 and having to hold your breath for that long. At least you don’t have to drive 200kms each day to have treatment.

I have a suggestion, perhaps even some advice.

If you have a friend or relative who’s going through cancer treatment, comparing their experience to your aunt’s cousin’s brother-in-law’s mother and starting a sentence with ‘at least’ negates the fact that your friend is going through an experience of their own. And while it might not be ‘as bad’ as someone else they know who’s going through cancer treatment, or has already gone through cancer treatment, they’re still experiencing something.

They’re still dealing with emotions and what ifs and potential side effects and uncertainty and not knowing and I know uncertainty is similar to not knowing but it’s kind of different too.

Don’t compare.

Don’t start a sentence with ‘at least …’.

Don’t tell them stories about their best friend who’s just died age 30 from bowel cancer.

Don’t tell them they’re lucky.

Don’t make out that their experience is any less than someone else’s.

It’s hurtful …

So much so that I cried in the shower this morning.

Life

A hiatus

Posted on February 16, 2019February 16, 2019 by Sharon

Finally, life is back to normal.

I’m driving again, I’m back at work (and actually doing work), back at the gym (even doing some upper body work and this morning I ran almost 2kms as part of walk club), and I’m attending a photography course two nights a week plus doing the requisite homework for it.

My scars are healing well – one of them is virtually invisible (and in a spot that no one besides me would look anyway) and the other one is still a little red but otherwise fine.

It’s been four and a half weeks since my surgery, I’ve been to the final post-surgery checkup with the breast surgeon and she’s happy with my progress.

It feels like normal life and that feels good.

Except … I now have a schedule of radiotherapy treatments covering some of the fridge poetry I composed last weekend. Beautiful poems of tenderness and fragility.

Okay, I lie. The poems are words flung together with barely any thought and consequently are absurdly nonsensical.

You can only imagine how horrid the ones being covered are!

But the covering – the sheet of paper obscuring the absurdity of my fridge poetry – reminds me that life is not yet back to real normal.

I’m living in a hiatus. And I like it.

I can pretend that this particular episode is over and normal life has resumed … apart from the times I venture to the fridge, and when I have other appointments. Like the one on Tuesday last week.

I received the schedule on Tuesday last week when I went for my radiotherapy consultation. It started with a meeting with the finance person who gave me a patient card and explained what I needed to do with it, a parking permit allowing me to park on the hospital grounds for free during my treatment, and a hefty document explaining how the treatment will be financed.

I was startled to hear that it’s amazingly expensive – $24,000 to be precise although there might have been a few cents added in just to make it look like that wasn’t a number plucked out of midair. Thankfully we live in Australia and Medicare pays most of it. The out of pocket expense is a lot less, but still a substantial amount of money. I signed the forms and then was introduced to Katrina, one of the radio therapists. Until that particular moment in time I had never realised that was an actual job title.

Katrina led us to a part of the hospital we hadn’t visited before – I don’t think there are too many of them left – then into a cubicle where I had to take my clothes off – from the waist up – and put on a gown (opening at the front please). I put my clothes into one of the blue patient bags, handed it to Tim and followed Katrina into a room with a big machine in it. I lay down, put my arms above my head and held the handle bars as instructed, I was wriggled into position, then drawn on, wriggled into a slightly different position, lowered, moved backward then forward, raised, had some sort of cube taped to my stomach, drawn on some more … I have to admit to feeling like one of the drawings on Mr Squiggle.

I put on the goggles as instructed, then watched as the yellow bar raised and lowered as I breathed. When I took a particularly deep breath the yellow bar went into the blue box at the top and turned green. I practised breathing and holding the green bar in the blue box (holding my breath), as instructed, then breathed normally. Okay, we’re going to start the first scan now, says a disembodied voice close to my right ear. Breathe normally.

I breathed normally watching the yellow bar float up and down, my arms starting to tingle from being held above my head for so long. The screen in the goggles went to a white square and static-like lines criss-crossed it.

Silence.

I lay still.

We’re going to have to stop there, said the voice.

Apparently, the CT scanner had stopped working. They turned it off and back on again but then engineers were mentioned and I wondered if I could put my arms down. When it was decided that getting it going again would take quite some time, I was able to put my arms down, remove the goggles, but before I could get up they did a tracing of all the drawings they’d done on me. When I say ‘drawings’ I really just mean crosses. The tracing is in case the crosses wear/wash off between now and my treatment.

Can you come back in on Thursday morning so we can do the full scan? Sure.

The crosses had washed off by Thursday so the tracing proved its worth. Less wriggling, fewer drawings, scanner at full power the whole time, yellow bar turning green as it moved into the blue box, breathe normally again thanks Sharon. Apparently I’m very good at the breathing! Years of experience, I tell them.

There’s a blood vessel at the bottom of the heart that falls in the zone of the radiotherapy treatment, as does the bottom of the lung, so holding my breath means the blood vessel and lung are lifted out of the way. It’s a simple yet clever innovation in treatment which not every radiotherapy clinic offers.

Second scan complete, I pick up the new schedule, drive home and put it on the fridge, a reminder that it’s not quite over.

Because of the delay in doing the scan, my treatment will now start on Thursday 21 February at 8am. That’s the day I’m running a new staff induction day at work. The induction day is sure to take my mind off the beginning of treatment and plunge me back into work reality – at least that’s my hope.

I don’t really know what’s in store for me as I go through treatment, but I’ll find out soon enough.

In the meantime I’m enjoying the hiatus.

Life

The next phase

Posted on February 3, 2019February 3, 2019 by Sharon

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’.