CHEMO & RADIATION

Radiation Part 1.

The kindly nurse informed me she had had both her tits removed so knew all about ‘what I was going through’. I think it’s nice she (over)shared that morsel of information – though I wasn’t comforted. Something I have always been conscious of is trying not to ‘compare’ experiences. Hearing some stories makes me feel like a fraud. I won’t lose both my breasts. The type of cancer I have is treatable (some aren’t). People endure horrific diseases, pain, illness every day, it’s not a competition.

Each person will tackle a life challenge differently. One person’s fortitude, endurance, resilience will not necessarily be the same as the next. Nor should we expect it to be. While there will be constants, how an individual experiences – and copes with – life’s challenges, will vary infinitely. Availability of emotional and practical support from friends, community, work, loved ones; access to medical treatment; geography; income – myriad factors will influence your experience. Self-help books are generally rubbish. They may provide a few tools that will help some but mostly they’re just another writer regurgitating some buddha-bullshit and making a ton of money out of us cashed-up, fucked-up, white, western folk.

Comedian, Jimmy Carr: what do people in the developing world (ie. the poor people) use self-help books for?

Firewood.

Work it out people. Just be a decent human being.

The kindly nurse informed me she had had both her tits removed so knew all about ‘what I was going through’. I think it’s nice she (over)shared that morsel of information – though I wasn’t comforted. Something I have always been conscious of is trying not to ‘compare’ experiences. Hearing some stories makes me feel like a fraud. I won’t lose both my breasts. The type of cancer I have is treatable (some aren’t). People endure horrific diseases, pain, illness every day, it’s not a competition.

Each person will tackle a life challenge differently. One person’s fortitude, endurance, resilience will not necessarily be the same as the next. Nor should we expect it to be. While there will be constants, how an individual experiences – and copes with – life’s challenges, will vary infinitely. Availability of emotional and practical support from friends, community, work, loved ones; access to medical treatment; geography; income – myriad factors will influence your experience. Self-help books are generally rubbish. They may provide a few tools that will help some but mostly they’re just another writer regurgitating some buddha-bullshit and making a ton of money out of us cashed-up, fucked-up, white, western folk.

Comedian, Jimmy Carr: what do people in the developing world (ie. the poor people) use self-help books for?

Firewood.

Work it out people. Just be a decent human being.

Where the breast is located (in case some of you were unsure …) means the radiation can affect the heart, lungs and ribs. The treatment requires you to hold-your-breathe for 20-30 second intervals during which, the lungs are ‘pushed’ down (I guess deflated) and hence minimises the radiation hitting them. You may be at increased risk of cardiovascular disease in the future due to the radiation. Some of the ribs can become more brittle because of the radiation which may become a concern/issue if you suffer some form of hard impact in the future eg. a car accident. He also explains there is a very very slim risk of cancer arising from the radiation treatment itself. We’re talking 1/10,000.

The maths in my head is saying: you have at least 30 years in which you want to live, work, stress, travel, plan, read, run, eat, laugh, drink, worry, be a friend, a sister, walk, wonder, have sex, think, socialise, make mistakes, swim, sit, do nothing (that’s not in order of importance by the way …) What gives me the best odds of doing all those things ….?

Yesterday we heard Olivia Newton-John died. Which made me sad. Does anyone know anyone that doesn’t like ONJ? Like, she did not have a bad bone in her body (a bad boob or two definitely). When Grease came out I was six years old. I begged my grandparents to take me. They took my sister and me to a 2pm session at the old Ngongotaha movie theatre – daggy old seats and a sloped wooden floor. It was a ripper. There were people up dancing and singing at the front of the cinema. My grandmother never forgot that scene – it was one of the most peculiar – and joyous – events in my life! For me, my sister, my grandmother… I think my grandfather was bemused/horrified/slightly confused!

I arrive back at the office about 2:45. BAU. So so much to do. My beautiful colleagues are caring but unintrusive. We listen to ‘Hopelessly Devoted to You’ for a bit of ONJ nostalgia. JP, NS and I work quietly, talk shit (mostly about the antics of teenage lads ….) until the moon comes up and it’s time to go home. Sam is out having fun with his buddies. Leftover curry in the fridge. Will sleep and find out about chemo tomorrow!

Chemo

11 August 2022
I haven’t cried yet but I’m sure the tears will come.

Hammered through work, bailed at 10:50 on the dot to get to Canberra Hospital by 11:30 – drive, park (oh my, what a nightmare … Calvary was a dream compared to this). 4 levels later driving at 2 km/hr I finally snagged a park – seems you need to use the same route to access the upper floors as you do to make your way to the exit. Design geniuses.

Second floor of Cancer HQ. A long queue for reception. I was processed then sent to Waiting Room A.

Waiting Room A could quite possibly be, the most depressing space I have ever had the pleasure of spending time in. I would rather be waiting at Centrelink or the Jetstar check-in. No less than 30 people, of which I appear to be the youngest, men and women in various stages of treatment and recovery, some in wheelchairs, some bald, most bored. Nearly everyone had a ‘support’ person – some two – some three. I suddenly feel very lonely. One particularly slobbish ‘support’ person has taken one of two lazy-boy style chairs – obviously reserved for people who are frail, in pain. He lurches around, playing with the buttons. Dick head. There is a large library full of resources … again, no one wants to get up in front of everyone and have a browse lest the waiting room find out what kind of cancer/issues you’ve got. At around 12:10 I was called through by the nurse – height, weight, BP, pulse, oxygen – then back to Waiting Room A. So many people come and go, I’m still waiting. Now hungry and worried about the chunk of leave I’ll be taking from work today.

Abdullah the Medical Oncologist’s Registrar finally puts me out of my misery. A lovey, clever chap with a gentle manner and like Eric, is clear and thorough. The specialist asks, which I find odd, ‘what is it you think has happened to you’? I guess, along with name, DOB, address, they want to make sure you are who you say you are – and compos mentis. It puts me on the spot … urrrr … aren’t you supposed to be the one telling me?! We go through what has happened, again. From the initial detection to diagnose to surgery, recovery. Finally we get on to the guts of things …

The tumour was larger than initially thought. Bugger. It became apparent to me – very quickly – there was no doubt chemo would be required. Of course you always have a choice. All the doctors I have seen have been very deliberate in explaining the options, the risks vs the benefits, the side-effects etc. – from doing nothing to having your breast(s) removed. He discussed the different levels of chemo and then interestingly, ran a program (compliments of the NHS) that spits out your ‘survival odds’. From doing nothing to going full-on chemo, mastectomy, the works. I am going to put some of these on a different page – I find them interesting but the numbers may be a bit ‘yawn’ for most(!) Me: sad, maths, geek. In summary, I will have 3 months chemo followed by 4 weeks radiation treatment followed by 5 – 10 years on hormone meds. The chemo will start in the next couple of weeks – when a chair comes available (literally!)

On Thursday night I flew to Sydney to spend some time with Simon and his kids. We had planned it – knowing the appointments on Wednesday and Thursday would be stressful. Nothing like spending some time with some steak, a lovely bottle of red, a 14 year old aspiring Wallaby and an 11 year old contortionist – oh, and a white, grumpy middle-aged man with a penchant for WW II bunkers and inappropriate jokes. I finished work on the Thursday, zoomed home, chucked some stuff in a bag, jumped in the car, drove to the airport, handed the keys and P-Plates to Sam, slammed down a glass of fizzy in the lounge, got on a dash and flew off into the darkness. Up until now, I haven’t cried. I’ve been madly scheduling, writing a mental to-do list. Trying to keep it real? Denial? Fear? Acceptance? ‘Whatever’?! I don’t know. Just numb. One of my aunties who has been a nurse for 100 years was surprised I was surprised. I guess she knew the tell-tale patterns of the disease … 

Update July 2023: most readers will now know what a complete c*** Simon was/is. But … this is what happened – at this time – and it was good.

C-Day

Wednesday, 24th August is C-Day. Chemo-Day – yahoo!! Can’t wait. Like really, I can’t wait. The sooner I get started, the sooner I can piss this fucker off. I really really tried to find an inappropriate, funny picture to go with this post. Sadly, we, people, the internet are not good at taking-the-piss out of shit situations. I read an article today “What ever happened to Steady Eddy?” A man with cerebral palsy who did the comedy circuit in the ‘90s. At one performance I attended, he (inadvertently) won the dance competition while he was ‘on his way to the toilet’ – he made a career out of taking the micky out of his disability. Legend. Fucking funny. FYI Eddy is now married and living in Queensland. In his biography, Jimmy Carr describes introducing himself to Stephen Hawking and sharing subsequent pissy events and curries. Despite being a theoretical physicist, cosmologist, writer, Stephen was an exceptionally messy eater. I can’t find any pictures of that either.

Even though it sounds like good maths, it still feels like a lot to ask: to be tired and sick for 6 – 12 months to reduce the chance of cancer coming back and in doing so, give me a shot at living longer. I’m aware I have an advantage in that I am relatively young. If it was a few decades down the track, I think I would forego the treatment and live-large on what I had left. Rather than be sick and weak and tired and bald for a year. The things I could do in a year ….

24 August 2022
Oh wow. What a big big day. Starting with a cold shower. Not by choice. The hot water has run out in the apartment building – which serves me right for not getting up earlier. 6 degrees, breakfast, coffee. I pack a few items from my sentimental shrine/chemo temple – things that remind me of good times, good people.

Level 4 today. My lovely nurse Hannah gives me a 1-hour education session. Very thorough – we cover pretty much every worst-worst-case scenario. Whoops, someone forgot to give me the pre-chemo steroid to take yesterday. No worries, they’ll pop some in the drip beforehand. I’m warned the steroid may ‘amp’ me up a little. A good day to get the housework done – if I wasn’t tethered to a drip for the next 4 hours.

Hannah attempts to put a canula into my arm. No luck. Mike gives it a shot. No luck. Lois brings out the big guns – the ultrasound. Done. First pop. Mike and Hannah then read-me-my-rights ie. name, DOB, address and what they’re going to administer. All sounds very formal and just a wee bit scary …

Susie, the pharmacist comes past and goes through the ‘support meds’ ie. the steroids, anti-nausea drugs. The list is long and I can’t pronounce most of the names. Apparently, I should be taking this this and this – at these times. My head is swimming with the names, instructions, schedule. I will have to get Hannah to help me write it all down before I go. I literally have a square blue bucket for all my meds. I also find out, while the chemo is covered by the government, the support meds aren’t. I will need to pay for them at reception on the way out. Thank you Slade Health (part of the Icon Group) – who are going gangbusters, these guys make a lot of money out of cancer … I get a take home Slade Show-Bag which includes some MooGoo products, jellybeans and a soft bristle toothbrush for when my mouth, teeth and gums succumb to the effects of chemo in the weeks and months to come – hooray.

They start with the steroid in the drip and then, at about 12:30, the chemo drug starts. Slowly does it. After 20 minutes, another nurse, Jess comes through. All going well so she speeds it up a little.

The lunch lady comes around with her trolley. Yay! I thought I would be able to do a late lunch but I’m not going to be out of here for at least another 3.5 hours. I have a slice of vegetable quiche, not bad for hospital food.

1:06pm and I now have a long, dull stretch ahead … I have my chemo playlist, my crochet, crosswords, ipad with a variety of crappy programs downloaded and 2 books. My lazy boy chair is set to the perfect angle, I’m bundled up in warm blankies. Now kind of channelling a spa-meets-long-haul-flight setup.

This wing of the hospital is relatively new, the place is busy but discretely curtained. I see a few people walk past on their way to the loo – drip trolley in-hand. Some go frequently (I’m certain just to have a walk/take a sticky beak at the other inmates). Sadly, over half the people in there are men – most of them my senior. Guys – get your bits checked. For a few minutes’ embarrassment/discomfort, it is worth getting on top of these things sooner rather than later. This is not a happy place to be.

After a long day of having poison injected into my body, I head home. Strangely ok. I’m not sure what I’m waiting for … my hair hasn’t fallen out, I’m not vomiting, I’m a bit foggy but otherwise ok.

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