31 October 2022

What do you do on 31 October 2022?
Your tax return (yay!)

• Start end of month workpapers (sigh)
• Get last round of chemo (….)
• Write a self-indulgent blog about how hard your life is

I’ve decided to start this post with The Good Stuff. Because good stuff does happen – it just seems to be constantly eclipsed by the shit stuff. I may have THE best cup of coffee in the morning, by evening, it is long forgotten. I guess I should be practicing some kind of morning gratitude ritual, but it really isn’t my gig. I find meditation and yoga boring. I much prefer to wake, do my Wordle, check the news headlines to see if any musical legends or royals have died overnight, shower, grab a coffee and listen to an inappropriate joke.

The Good Stuff
Given my melt-down last week, I decided to take some leave. Seems I’m not coping as well as I may seem. Told my colleagues I would be taking 3 days annual leave. Travel to Brisbane – to Glasshouse Mountains – stay with Tara, Daisy, Lucy and Max (human, dog, dog, cat).

I arrive late, after dark. I wake the next morning, 5am, no blinds/curtains, a cool stillness, native birds clucking and cooing, my beloved dog, Lucy, beside me. A walk to the lookout, return to Daisy and Max, the best homemade coffee and Fabio, the resident, free-loading, sunflower-seed-loving king parrot. I feel calm and happy, and the day passes gently. Don’t tell anyone but this place is paradise. I want this to last forever.

Friday I travel through Brisbane to Boonah to visit my beautiful Aunty Joan and Uncle Andrew. Good, kind, generous people. My uncle and I walk with Lucy down to the Doug and Dan (the local) for a drink before enjoying a wonderful dinner prepared by Joan – including veges harvested from their garden. I sleep well and wake feeling rested and fortunate to have such good people in my corner (no mindfulness or positive affirmations required).

The Good-Stuff
(in no particular order)

Seeing Tara, my dog, my uncle, my aunt.

My darling friend sending me an air-fryer oven. This baby does pizzas! She insisted on buying it for me so I could whip up some nutritious meals on the fly with minimal effort. I am digging it. My efforts so far include:

• Chicken kiev (store bought) + (homemade) potato and sweet potato wedges
• Quiche
• Homemade pizzas
• Baked veges (pumpkin, zucchini, sweet potato onion, capsicum) – tossed through some chickpeas, add dressing (also happens to be vegetarian … perhaps even vegan … though I would never admit that)
• Mini apple pies (fat/calorie/guilt-free)
• Bacon (also fat/calorie/guilt-free)

Catching up with some of my long-lost work colleagues at a gnocchi-making class (Alyse, Crystal, Kristen, Beth and Steve – you made my day!)

My Peter Alexander dressing gown from my wonderful friends in Melbourne – it has been THE BEST, most comforting piece of wardrobe I have ever owned.

Spending time with Simon and the kids to celebrate Simon’s birthday. O & C love goofing off and having a laugh! This year we went for an Oxford-St-Bogan theme. We enjoyed champagne, wine and a lovely dinner out at Vino e Cucina.

Watching ‘The Outlaws’ on Prime.

Watching the storms coming through on the radar on BOM.

Enjoying a birthday lunch for my lovely work colleague, Nicola at Public Bar in Manuka.

The amazing science and medical teams who research, treat and care for people – including the admin, security, cleaning staff and volunteers (who bring round the tea-trolley and knit beanies of all shapes, sizes, colours for us baldies). There is an entire department, buried deep in the bowels of the hospital, whose job it is to maintain, repair all the equipment – from the beds to the BP monitors – who knew? Unsung, unseen legends. Many hospitals are woefully understaffed and these folks are seeing people at their worst. For the few less-than-great experiences we may have, there are hundreds upon thousands of positive outcomes. Hallelujah.

Catching up with my sister regularly and hearing all about her work (promotion!), her bushwalks in the deep dark NZ bush with Rob (including near-death experience … saved only by a hot bath and a glass of wine after the ordeal), the guinea pigs Eddie and , her hangover (rare) – our comms are warm, relaxed, comforting.

The breakfast quesadilla Tara made me for breakfast on my day of departure. She never told me she was a maestro in the kitchen. I’m now happy to do washing-up in return for gourmet creations.

My old friend Flea and her peeps launching the 2023 ‘Treasured Chests’ calendar at the Kuaotunu Hall.

Cranking up the (very big) sound bar in the Glass House Mountains and blasting out (and dancing to) our favs: George Michael, Madonna, Mickey J, Prince, Talking Heads, Stevie Wonder.

The nurses at the Canberra Hospital Cancer Clinic.

My son.

My dog (who I think I’ve already mentioned but she’s a dude and deserves an encore).

The Shit Stuff
I am a mess. The last few days have been overwhelming and while this should be a celebration, of sorts, it is bitter sweet. I am finding it hard to see the positives. I got up early this morning to drive to the hospital to get my bloods done prior to afternoon treatment (they require it to be done 1 – 2 days beforehand but if you have treatment on a Monday, it is difficult finding a lab that will do it on the weekend AND get the results back to the hospital in time). Drive home, log on to work. Back in the car at 12:30. Back into The Carpark. Oh dear, we have a first-timer who drives at 5km/hr looking for a space (seasoned visitors like me know there will be nothing available below level 4 at this time of day) … patience … patience ... tosser … move along. Arrive in the ward just after 1pm, don’t get plugged in until 2:30pm (usual delays with bloods, charts, meds – at least Hannah had the sense to go straight to the ultrasound this time).

While we shouldn’t have a favourite child – or favourite nurse – Hannah is my favourite. She just is. She is bright, matter-of-fact, confident, compassionate, efficient, speaks kindly to all the patients – young, old, male, female – asks them rainforest, beaches, what they did on the weekend. Just a damn fine individual. I will miss her. She was the one who brought out the ‘Last Chemo Sign’! She took some pictures then I asked her to remove it – out of sensitivity to the other patients (she got it). Nothing worse than starting chemo and having someone gliding on out – it’s hard to be happy for them when you’ve got months ahead of being pinned to that chair, a canular inserted into your vein and a cocktail of poison running into your body. And for some, the chemo won’t be enough – they will die.

In my ‘pod’ today – there were women, men, old, young. All walks. The woman next to me was elderly, accompanied by her adult son. The staff had a terrible time getting the canular in – she screamed in pain every time they tried – broke my heart. Further down another elderly woman, accompanied by her partner, was in for her first treatment. She was weak, scared, confused. The other chair next to me rotated between a 60 something-year-old woman to a 50 something-year-old woman. As soon as one patient leaves, the chair and equipment is wiped down by the cleaner (more unsung heroes) – ready for the next patient. Across the way, a man, not yet 40 is getting treatment. It is humbling, sobering and an amazing equaliser. There is a sad camaraderie. No one talks to each other (though they should) – the curtains aren’t drawn however I recognise there is an unwritten ‘privacy code’ which exists between us – and that’s ok.

My nails are dying.

Getting my head patted down at security at Canberra airport by a large, butch gestapo dyke. I had removed my soft, cotton chemo hat but not the stretchy band I put over my head – because I’m embarrassed about the weird, rough, white patchy regrowth – not to mention the breakouts on my scalp which are sore and unsightly. While I'm getting my head checked, two women come through behind me – through separate scanners – wearing hijabs. Neither are asked to remove their scarf or under-scarf (plus I’m certain security would not have performed a pat-down of their head in a public space given it would be culturally inappropriate). I was quite upset by the experience and later popped back to security to ask to see the footage confirming my scan had identified ‘an area requiring further inspection’. They took my details but never got back to me. Sigh. Thankfully I didn't have an explosive devices or weapons under my very thin, stretchy head scarf but you can never be too sure what a 50-year old bald white woman might be hiding ….

6:30pm. Now home. I am hollow. Drained. Last chemo. Yay. I haven’t arrived here easily. I feel everyone has forgotten. It’s been 7 months. My resilience and sense of humour are …. gone. My partner has had enough, as have I. Tip: don’t hook up with someone with cancer – it’s a long, lonely, selfish road. As we move towards Christmas, I have had to decline nearly every invitation to the wonderful gatherings with Simon in Sydney due to the chemo and upcoming surgery and radiation schedule. I have 4 weeks radiation to go (from mid-November to 16 December), surgery 11 November to remove horrible horrible merina plus multiple appointments with oncology, pathology + CT and PET scans. The first is on Thursday –  in 3 days’ time with my medical oncologist who will discuss whether I require any further chemo. Surprise me!

I still need to go in for my Peg injection 5pm tomorrow.

Chemo-Brain has definitely kicked in. It is frustrating and embarrassing. Mental tasks I normally fly through are taking twice as long. I been apologising daily for my errors – miscalculations, transaction missing words, very forgetful. Memory is poor. I’ve lost a  bit of confidence – starting sentences then forgetting what I was going to say … I’ve actually stopped talking as much (a good thing you say??!!)

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Simon has given my apologises for being unable to attend the upcoming school, social, work gatherings in Sydney. FOMO is real, I’m feeling it, I hate it – and feel ripped off – truth. I have (somewhat delusionary, desperately) RSVP’d to my work events including Power BI and Data Services & Mining seminars (accompanied by wine), Christmas Parties at the Boathouse, La Cantina and the Brindabella Hills Winery. I’m going to drag myself along to all of them. Simon, O & C are flying out to UK for Christmas and New Years (+ skiing in Germany) on 15 December. It is the first time the kids will have seen their UK grandparents for 3 years (compliments of COVID). My last radiation treatment is on 16 December. No one is confident I will be able to travel (long haul, cattle-class) at that time or soon after. We can book, take a chance, suck up the cancellation fee. I don’t know what to do.

The next 5 days will swing between sleeplessness (thank you Dex), nausea and diarrhea, a burning oesophagus, loss of taste, mouth ulcers, an extremely doughy brain, fatigue and a new one … itchy palms (WTF??) Not to mention numerous toilet trips during the night to flush out that poisonous chemo.

So there we go folks, we are all up to date. Despite my glum ramblings, I so so grateful to have you all out there cheering me on, sending me a virtual thumbs-up or a hug on the days I need it. It is not lost on me that everyone’s life is busy and full of daily challenges – mine are no more or less valid.

Rock on my friends. Luv yous all.