Radiation Part 1.
10 August 2022
A new adventure, Canberra Hospital – southside!
Today I met with the Radiation Oncologist – or at least her offsider Eric for the most part. A very bright, young doctor looking neat in his matching Tommy Hilfiger shoes, belts, pants, shirt. Gentle and thorough.
A senior nurse came in to ‘accompany’ me while I stripped off my shirt for show and tell. I’m a little unsure about this requirement(?) to have a same-gender chaperone in the room when I take my gear off. Do they bring a man into the room for male patients who are being seen by a female doctor or nurse? Personally, I’m not fussed. Like having the pat-down at the airport. A recent experience: to ‘hurry things along’ we got separated into male and female queues at the security screening (I can already hear the bleats of the woke, non-binary, gender-fluid brigade … ) – it didn’t hurry things along and I ended up joining the male queue.
Controversial.
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.
25 August 2022
The morning after. I’m ok. I’m alive. Phew. Bonus. I can tell my entire digestive system is being pummelled, from the top of my throat to the other end. Will need to take some reading material in with me … No appetite but need to eat to take meds. My face is very flushed which is not ideal. I take my temp. I am now considered ‘special needs’, if my temp hits 38 it’s off to the ER. Temp is fine. I decide to walk down in the cool morning air to get a coffee – I not supposed to have caffeine but I feel it is best for my mental health that I do (bad Abbie). The walk back is slow and sluggish but I’m proud of myself for getting out for a walk, albeit short.
At 3pm I head back over to Chemo HQ to get my injection of Pegfilgrastim. This is the good stuff – it helps the bone marrow to make new white blood cells (which will be trashed by the cancer meds). I am now a regular, first name basis with the nurses. Again, I’m sad to see there are more men on the ward than women. The guy in the curtain next to me is vomiting badly. There is a young man (<30) walking around with his drip – he was in yesterday. Poor bugger. Hannah scoots past with two rubbish bins then returns to say hi. We talk about her upcoming ball and how her search-for-the-perfect-dress is going. Kelly then goes about administering the injection. He is keen for me to give it a whirl next time so I can administer it myself in future. Needles don’t generally make me wobbly, but the prospect of DIY is scary. 45-degree angle, in she goes, click, done. It hurts. Makes me think that the buzz intravenous drug users get from whatever shit they inject into their body must be pretty damn worth it because I would not do this to myself willingly.
Soup for dinner then last round of Dexa (which I’m certain is responsible for my subsequent sleeplessness and upset tum). My first chemo crochet bunny is coming along well. Head and one ear complete. Shower, bed, book. But no sleep. Still lying awake at 1am. Try a spotify sleep thingy, the guy’s voice is irritating but boring enough to get me to pass out until 4am. This is not good. I doze until just after 6am when my favourite Friday morning power-tool starts up. Some of you may not be aware of my deep loathing of the industrial-strength leaf blower the caretaker across the street uses every Tuesday and Friday morning. He moves dust and shit around from one place to another, no leaves. It is the biggest, most powerful unit you can possibly buy – it is noise pollution – and laziness at its finest. I have many unkind, inside thoughts about that man and his leaf blower …
26 August 2022
So here I am, three days later. I’m aware my anti-nausea meds will wear off today/tomorrow. I’ve taken the last of the ‘roids. Tomorrow it will just be me and the chemo. I can get around, I can drive, I’m a bit slow but taking it easy and trying to stay positive. I’m even doing a few hours work at home today. I can definitely feel the drugs in my body – could be described as a hangover with mild gastro and reflux.
Trying not to think about the long road ahead, just enjoying the sunshine my friends!
The Storm
27 August 2022
Yesterday, after my last post, I took a call from one of my bosses who was kindly checking-in. I told her I was worried the relatively light side effects I was experiencing may be the calm-before-the-storm.
And storm it did.
By midday Saturday I was in the most excruciating pain – I liken it to bolts of lightning shooting through my bones. This is the side-effect of the Pegfilgrastim (aka Neulasta) – the white blood cell booster – the good one! The nurse administering the injection on Thursday advised I may experience some discomfort – like having gone for a big hike one day then having sore muscles the next. Nope. This was more akin to having electrodes attached to my spine, being stretched on the rack, having my body tossed into a frozen lake then plunged into a hot bath. Bone pain is no joke. And because of the cocktail of chemo meds in my body, there is little I can take to alleviate the pain. Paracetamol only. No aspirin or anti-inflammatories.
By mid-afternoon I am literally writhing and moaning in pain. I ring my sister, my aunt, Health Direct, the Rapid Assessment Unit (who tell me to take a hot bath with Epsom salts – despite me telling them numerous times I don’t have a bath ….) At their advice, I go to the pharmacy – she too is at a loss.
My knight in M&S arrives by train late afternoon. Simon sweeps in, gives me hugs, steak, bundles me up warmly in my all-hours Peter Alexander robe and makes it all better.
28 August 2022
The night is just as bad. Sleepless, delirious and in pain. I retreat to the bathroom and couch often. I have lost 3 kg in 5 days (silver lining?!) Simon and I potter through the day and then he takes me … outside! We visit the Kingston Foreshore and Old Parliament House. The roses are yet to come out but the nearly-spring sunshine is glorious. I am weak and slow but Simon is patient and chivalrous. It is pizza for dinner and a 7:30 bedtime for me. Feel like a pretty useless partner right now, we are both struggling. Caring for someone who is sick, tired, grumpy and in pain is tough.
29 August 2022
I pissed myself in the early hours of this morning. I finally manage to get more than a 2 hour stretch of sleep and that’s the price I pay. I’m 50 and I’m changing my own sheets because I’ve lost control of my faculties. Humiliating.
I am seriously demoralised at the prospect of doing this all again in 2 weeks’ time. I try for little joys: today I bought some strawberries, hummus, delicious yogurts – in hope of improving my gut health. My entire digestive tract has only two speeds right now – fast, slow. It is tempting to not eat at all but that just makes for weakness and hangries. Sigh.
I think I might have nits as my scalp is constantly itchy. I know it’s not nits but rather the hair follicles becoming increasingly sensitive as the chemo kicks in, possibly the ominous start of my GI Jane journey ….
Simon left for Melbourne early this morning. I had a little cry, then went back to bed to feel sorry for myself. I miss him – even though we’ve worked out he is not the best nurse and I am an even worse patient. But there is nothing better than a snuggle-huggle to make things all better.
My bc specialist nurse rang late afternoon after I had left a message detailing the pretty-bloody-rough weekend. She was understanding and kind (man I love these people). The side effects I experienced from the Pegfilgrastim were extreme. She told me the doctor would provide stronger pain relief and sedatives to get me through the next round. In hindsight, she said I could have gone to the ER but to be honest, I kind of thought what I was experiencing was ‘normal’. Considering I am due to have another jab in 2 weeks’ time (am going into a cold sweat just thinking about it), we need to get the pain under control.
30 August 2022
I’ve just typed 30 August 2021. Wishful thinking? Make me wonder … what was I doing on 30 August 2021? According to iCloud photos, we were in our second lockdown and I was taking pictures of sunsets, drawing chalk fairies and posting funny pictures of duck footprints in wet cement. Not in a million years would I have thought a year later I’d be sitting here in a chemo fog. Walked down for coffee and muffin today. Only a small coffee these days and even then I don’t finish it. My favourite muffin is Raspberry and Pear – gently warmed with lashings of butter. I pay the price by then taking at least ½ an hour out to visit the porcelain bowl (head up not down). Being a bit old-fashioned, I have an aversion to taking my phone to the toilet. I find it kind of yuck to think of doing-your-biz so close to a tool that you then put right next to your face. However I didn’t count on getting cancer so after keeping my shitter device-free for many years, I’m now bending the rules and taking my phone in – given it is for the long haul. I catch up on the news and take the time to do a bit of browsing …. recent searches/sites include (I kid you not):
* soft women hat cap cotton chemo
* how to make a crochet magic ring
* mucositis
* britney was broken i’ve been broken and it’s horrible
* large ice seizure
* how long effects last pegfilgrastim
* patience
* high fibre foods
* man of the hole brazil
* canberra weather
* funny cancer movies
* john diamond cowards get cancer too
Managed a few hours work today – and even an online meeting! Was nice to see good people doing their thing – and even squeeze in the odd laugh. May even go into the office tomorrow if I feel brave enough – and can be bothered getting dressed – and putting makeup on – which is harder than it sounds(!)