Six Months

Wednesday, 14 September 2022
​Chemo Round 2. The lovely Hannah, Lois, Kate, Jess, Jamie were all there to cheer me on. Such fabulous people. Jess and Hannah showed me pics of them at the ball they attended recently. They looked beautiful – and unrecognisable – scrubs do not do them justice! Hannah is turning 24 at the end of this month – she is very modest and doesn’t like ‘a fuss’ – which means I will have to get her something and make a fuss(!) Jamie and I traded stories of tattoos and Rav 4s. It was a long long afternoon. I arrived at 1:30 and did not leave until 6pm.

Thursday, 15 September 2022 - AM

​I have officially gone nocturnal. The Dex’ is keeping me amped and awake. Sam was bemused to see me dusting shelves and doing dishes at 10pm last night. I then watched 2 episodes of the White Queen (very racy) on Netflix before trying to go to bed. 1am, still awake. Snooze. 3:30am. 4:10am. Snooze. 6:10am. Sigh. May as well get up.

Thursday, 15 September 2022 - PM

​The Peg injection. I hate hate hate this bit. They tried to encourage me to self-administer at home. I am fine with needles, injections but DIY is a whole new ball game. I think, if I hadn’t had such a bad reaction last time, I would have been able to manage it but the mere thought of the Peg sends me into a cold sweat. The staff are kind, no fuss. I arrive just before 9am, the calm before the storm. There is one other patient on the ward, a first-timer who is having his education session. He looks and sounds terrified. I wish I could give him a big hug – or at least hold his hand, I know how scary, confusing and lonely it is. I meet Jane who I find out was born on the 1st of the 1st. We share hang over stories together while she preps the jab. Her 9 year old daughter was also born 1st of the 1st. Wow. A day of NYDBs 😊 I tell Jane about my colleague who has recently had her first baby, a little girl. I tell her how it brought me a huge amount of happiness knowing there was another little new life in the world. Amongst the sadness, trauma, grumbles and weariness, it was a lovely thing to reflect on and brought a big smile to my face (thank you A, P & Baby M).

Monday, 19 September 2022
​5 days after the last treatment. This time it’s different. I am wrecked. My body feels so so sick. Like a flu but without the temp and congestion. The liquid lightening was not as bad.

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Saturday – day 3 was still the worst. This time the weakness and nausea have lasted longer. On Saturday I could barely make it to the toilet. Which I have to do often as body (kidneys?) are working overtime to flush out the chemo.

I was a slave to the paracetamol regime, keeping within the 4 - 6 hour window. When I sleep, I am woken at the 3 - 4 hour mark which seems to be when the pain meds start to wear off. I only took one dose of endone – on the Saturday night.

Sam helped me with supermarket shopping yesterday. He also did a run on to Officeworks and Bunnings. Little treasure he is. The supermarket was hard and I shouldn’t have done it. I was desperate to get out and be normal. I leant on the trolley like an old woman while Sam went off to get onions. He never complains and I feel really bad he is stuck helping his sick, crippled mum. We try and stay upbeat, crack a few cancer/chemo jokes but it’s still hard. I have moments of hair and health envy – seeing people in their active wear, sashaying through the supermarket with their glorious locks, grumbling under their breath that the ash brie is out of stock. I’m just a little proud of my mother-son-shopping-training ie. looking for the newest bread with the farthest expiry date, only buying some things on special, looking at the price per gram/litre (thank you Simon!) I am not the supermarket’s best customer – I don’t buy on impulse, I don’t buy sweets, biscuits, soft drink, make-up or convenience food (with the exception of some frozen veges), mine is a purely transactional experience.

 I’m trying to weigh up what is worse – the last bout or this. You would think this is preferable to the pain but being weak and incapacitated is just horrible. Perhaps I shouldn’t make a competition out of it and just rest. I am bored with Netflix and Prime – seems to be movies and series with same old formula rehashed with a ‘diverse’ cast and woke messaging. Going to return to some classics – Clint Eastwood, Alfred Hitchcock, To Kill a Mockingbird. I’ve been watching some Swedish and Italian movies – with subtitles. They are refreshingly liberal – not too fussed about nudity and swearing – makes me feel better about my ugly, damaged body when I see women moving around naked, normal. I don’t have the strength to crochet or sew. Even holding a book gets exhausting + my fingers start to get pins and needles (another side effect of the meds).

I received a parcel from my mum. A beautiful Egyptian cotton sheet set. The women in my family are big fans of a well-made bed with good linen – she knows her stuff. Equally thrilling was receiving a package – at 7:30am - from Dan Murphys! It needed an over-18 signature – thankfully Sam was here and able to collect so I didn’t have to embarrass myself in the apartment foyer in my dressing gown. I’m not sure why I worry, my neighbours take their mini dachshund down every morning in uggies and dressing gown – or their oodie if the gown is in the wash.

Simon is on a whirlwind work trip of NZ. He sent me a picture of Bacon-flavoured vodka today. Krazy Kiwis.

Merina Update

​Following on from the Merina nightmare (evil little creature), I finally plucked up the courage to make an appointment with my GP to have it removed. The ultrasound has confirmed it is in there – and is where it should be. Appears the muppet who put it in may have cut the string too short? I knew it was going to involve a bit of (uncomfortable) ferreting around so I needed to get it done on one of my ‘good’ ie. strong weeks. Because I did not have a vaginal delivery, seems my cervix is a steel trap, none shall pass. After ½ an hour of lights, magnification glasses, speculums and various implements being inserted, rotated, my GP admitted defeat. I now have a referral to the Gyne to have it removed in theatre under general anaesthetic. This is not something I need right now.

Sunday, 25 September 2022
Some of you may have read my post re. getting Lucy (crazy-cat-dog) to Queensland. The travel from Canberra to Brisbane was tough. Sam helped me into the terminal as I had a shit tonne of stuff to take up. Just the busyness, queues, people hacking and coughing, walking, waiting. Thankfully I had a neighbour in 5B who was well behaved and minded his own business – a few obligatory pleasantries then we both retreated to our respective Netflix viewing. I made the dubious choice to watch a rerun of Ricky Gervis, Humanity which meant I burst out laughing at random intervals. My beautiful aunt Joan surprised me at the baggage carousel – another super helpful and wonderful person in my life!

I spent my first evening in Queensland pampered with homemade food, a glass of champagne, lovely company and a warm comfy bed (at 8pm!) My body was shattered. It is so frustrating when you’ve been fit and capable all your life then be slugged with an injury or illness that floors you. I feel weak and pathetic. Feeling bald and ugly is a far second now. I would give anything to have my health and strength back. My beautiful family and friends have reminded me I’m half-way-through – yay!! It is really difficult as I don’t share their enthusiasm. I’ve always been a half-empty kind of gal. I’ve been living this nightmare since April – 6 months ago. I’ll be through with chemo by the end of October and finished radiation hopefully by early December. But every treatment takes it toll physically. Chemo kills everything.

Monday, 10 October 2022 - AM
​Chemo Round 3. Hooray. I got home and Sam asked “how was your day?” Reply: “Great! Chemo is amazing, you should try it sometime”.

The last few weeks have been horrible. Difficult to put into words. If I hear one more person say “you’re half-way through!” I will literally empty a bucket of dog shit into their letterbox (or post it if they’re interstate). People with their full head of hair, planning holidays, Christmas parties (last year I was in quarantine with covid, this year cancer – what luck!) From diagnosis to surgery to chemo – booked in for radiation next month. Then 5 -10 years of hormone meds. Nurses tell me the radiation treatment will be cumulative - first week: ok but a little tired, second week: fatigued, third week: hit by a bus, fourth week (the blitz): cactus. And then at least 4 weeks to get strength back. They recommend advising work that those few weeks may require taking some leave – which is fine – because we have Christmas shut down so I’ll be taking (mandatory) annual leave. I have a magnificent employer who has been nothing short of amazing. I've been trying to work as much as I can – because I want to. I’m grateful to have the support but worried about leave and income. It has made me think just how vulnerable I am financially.

My dog is now in her temporary home in the GHMs. Miss her every day and wish I could change my circumstances so I could have her with me. Non-animal people won’t get it but she is my comfort. I know I want to find some place – somehow – where I can have her with me. She’s got a few good years left in her and I want to spend them with her, give her the best possible life she can have. Don’t know how or when or where yet, but I will make it happen. Giles admitted – 25 years ago – if we hadn’t had the cats in Karratha (1998/99), our marriage wouldn’t have survived. Ultimately, it didn’t, but there were lots of good times – and our parting had nothing to do with felines or hounds.

My current relationship is shaky. Supporting people with long illnesses is tough. There’s no rule book. You can’t park your life completely – work, children, social life, travel, intimacy. Caring for carers is so important. We ask (expect?) them to put up with us when we’re curled up in the foetal position in pain, feeling ripped off because you can’t go out – party, enjoy a bush walk – you’re so weak, feel ugly because you have no hair, your lashes have fallen out, you're angry with the world and your ‘deal’ so you take it out on them. You're envious of the people around you (seemingly) perfect and unscathed. You’ve put on weight, your sex life becomes dubious given chemo has pushed you into menopause, your life is dictated by doctor/hospital schedules, it is selfish and all-consuming. I’m not a religious person but when they say “in sickness and in health” – the in sickness bit is a big ask.

Monday, 10 October 2022 - PM

​I am so fucking over this. 6+ hours in the hospital today. Wanted to rip my canula out and do a runner.

I didn’t. I stayed. With Lois – the last nurse with the last patient in Pod 1. She took out bags of used water bottles, toxic waste containers, organised schedule for tomorrow while she was waiting for my last bag to run through. Lois is a wizard at inserting the canula using ultrasound. She’s a seasoned person on the ward, zooms around on her chair, given me some tips-and-tricks on navigating this gig. Kind, practical. I love these people.

Spoke to an old work colleague today who lost his sister, aged 56 to cancer only 3 weeks ago. She had been fighting for years and decided enough was enough. When she was given 4-5 weeks, she told the doctors, just keep me alive long enough to see my kids who were living overseas at the time. She died at home, on the farm, surrounded by her children and extended family. We wept a little and took stock of ‘our lot’.

Tuesday, 11 October 2022
​Worked like a demon today. The ‘roids are doing their bit. Zoomed down to the hospital to get my Peg injection at 5pm. Done. Zoomed home. Cook dinner, clean up, washing, reading, emails. 1am … tick tock. 2am … tick tock. I try to find a Guided Sleep Meditation but they’re all woeful (suggestions please?!) The women sound like they’re balancing chakras and dreamcatchers while frolicking with pumas and swaying to the beat of a vegan-leather drum. The men swing between a blissed-out Julian Clarey, a white ford transit van driver offering school children a ‘ride home’ and Barry White ordering an upsize fries at the McDonalds drive through. I decide to drop the ‘guided’ bit and just run with some sleep meditation music. It works … until it runs through and I wake when it starts again with an intro and advertisement for Les Mills. 4 – 6am I get into the zone – but need to go to the toilet so that’s that night over. Sigh.

Wednesday, 12 October 2022

​So here I am, all up to date. I’ve been taking my pain meds religiously – can feel the twinge come on at the 3 hour and 55 minute mark. I know tonight it will kick in big time. Thoroughly miserable and just want this to all piss off.

PS. I would never put dog shit through anyone’s letterbox – or post it (or if I did, I’d at least make sure I had the correct postage – and a return-to-sender address – no point it being anonymous.

PPS. That same beautiful boy who asked how my day was, made a batch of homemade chicken soup for me – from scratch, first time, bought all the ingredients and followed a recipe. He apologised he hadn’t made more because he ran out of stock.