Spring

I have woken at 5:30am, it’s dark and the world is quiet and still but for the waking birds outside my window. The lake has a soft mist settled across its glassy surface and the very first blush of a pre dawn glow is beginning to bloom above the mountains. Yesterday I had Paclitaxel number nine. I have three to go and I can barely allow myself to think of how it will feel to end this. Going in to chemo has become an almost comfortable routine. The ladies at the front desk of the hospital (and at pathology each Monday) greet me by name. The beautiful oncology nurses and other patients receiving treatment are my weekly social connection. Each week though, it’s getting harder and harder find a vein for my cannula. Sometimes it takes three goes and I leave with multiple bandaids covering blossoming bruises.

Since lockdown began, it’s been more of a surreal experiences. The streets are unsettlingly empty, everyone in masks everywhere… The pathology workers began wearing full PPE this week and we now have to keep our masks on through our treatment in the oncology rooms. The nurses have always worn theirs, but now patients do too. Previously, we could wear them into the hospital and then remove then when we sit down. Most of the other patients are very elderly, many are very unwell. It must be an added layer of difficulty for them, but no one complains and everyone is warm and friendly and often ready to share their story.

Yesterday I came home feeling particularly smashed by the chemo. It’s usually not too bad, but also wildy different each week. Yesterday I was feeling awful and could barely move from the couch. I still find it really hard to just accept that I’m feeling bad and rest. I’m still learning to control the need to be busy all the time and not being able to do anything almost makes me crazy. I’ve woken up feeling a bit better today - let’s see if that lasts.

My hair has began growing back. It’s completely white and strangely soft and whispy. It’s like a glowing white halo across my head. I can’t stop touching it. I have tiny eyebrow hairs, but my eyelashes are stil M.I.A. Although my nails have a white ridged line across them for each Paclitaxel treatment I’ve had, they don’t look bad or like they’re going to fall off. I am so relieved about that - the idea of losing my nails freaks me out. At the moment, I’m dreaming of getting a manicure and a pedicure… haha a small thing, but something I’ve not been allowed to do while I’ve been having chemo and something I’ve missed. It’s not only me missing that sort of stuff though. No one is getting anything like that done at the moment in lockdown.

I had a call from the radiation people the other day, booking me an appointment to go down to Newcastle and have my planning appointment. I will get a scan and some lovely tattoos. I have wild anxiety about the scan. I know this is normal, and also something I will have to get used to for a very long time.

Last week, at the end of my chemo cycle, Marce and I began leaving early morning to run the dogs on Boomerang Beach - a beautiful place about ten minutes drive from home. Dogs are only allowed off leash before 9am (stupid council rules). The beach is magical, almost deserted. The sand is icy but the sun shining. When I finish chemo, I want to start my day like that everyday I can - walk the beach… begin building back my stamina. At the moment, even on a good day, I can very slowly manage a walk along half the beach (not a big beach) and back up the gentle hill to the car. I can’t wait to be back to normal capacity!

I have decided that I’m going to share all of this work on the day I finish chemo… that’s the aim anyway. The series isn’t finished, but neither is my journey and I’m ready to take people on it. I’m going to put all my time into polishing the images, finishing promotional videos, organising social media (which I hate and am crap at - but luckily have a daughter who is working in digital marketing here to help me). I want to write the music to go with the images, but I’ve really been struggling mentally with that side of the creative process. A big part of it is also that I don’t have the stamina to sit up at my iMac for long periods of time. I do almost all my editing of images and other stuff on my MacBook Pro, sometimes lying in bed when I’m feeling really bad, or at the couch. Not getting to the music is driving me a bit mad, but I have to have patience in the creative process and listen to my body (and mind) at the moment.

Sep 4

It’s Saturday. I’ve had an awful week. Wednesday, Thursday and Friday hit me hard. Thursday in particular I was bed ridden. It felt like I was back at the begining, having the AC chemo again. Wednesday I spent the day on the couch feeling terrible all round but particularly because my face was burning up. My cheeks were bright red and felt like they were on fire to touch. My digital thermometer red them as 38 - 40 degrees all day. I didn’t have a fever though - just this wild flushing.

Thursday was horrific. I lay in bed all day, unable to do anything but lie there and feel like I was going to die. Yesterday was slightly less nightmarish and this morning I felt well enough to leave the house for the first time since chemo. I’ve been waking up ridiculously early each day - usually before six. This morning Marcie and I took the dogs to the beach. I managed to make it down onto the sand and back to car and have been floored ever since. As well as the hideous fatigue, I’m having lots of weird nerve pain in my fingers today. I spoke too soon about my fingernails too. They seem to be contorting and lifting slightly at the sides. They’re so brittle and I have been waking up with little tears in them at the side - way too low down to rip off with out bleeding. I cover my nails with a band aid to keep them from catching on things and ripping off. I feel like my body has had enough.

Sep 22

It’s been a bittersweet few days. Today is Wednesday and I should have finished chemo yesterday.

My beautiful Marcie turned 25 on Monday. I couldn’t stop thinking all day how very lucky I was that I got to spend her birthday with her. There have been so many silver linings. We had a lovely day. My last few treatments have been easier than the one I wrote about previously. Still fatigued and a bit rough, but much easier. My liver numbers have been going down each week, I’ve had no more weird flushing, everything seems to have settled. It meant that I was up to heading out with Marce for a really nice day. We started the day with my weekly blood test (not the fun bit) and then headed for a pedicure and manicure. Our region came out of lockdown a couple of weeks ago. My nails have continued to crack, but don’t seem to be lifting off, so a manicure would help stop them from ripping.

After that, I ventured into the shopping centre - first time in around four months that I’d been out in a public place (aside from the hospital). We went to the jewellers where Marcie picked out some earrings and we bought matching necklaces. I bought a huge bunch of flowers to give to the oncology nurses the next morning when I went in for the final round. It was a magical spring day, so we headed home, packed a picnic, picked up Mum and found a shady spot in a secluded park on the lake where the dogs could run around and we could sit on our rug. It was a simple birthday, but so so lovely. Beautiful spring day with my favourite people and my last day of chemo one sleep away.

That afternoon, I was having a rest when my oncology nurse rang. My blood test had shown that my liver numbers had gone back up and Dr. Giovanna wanted to postpone my treatment for a week. I had been counting down to this day for months and now the goal posts had been moved. I spent a few hours teary and frustrated. It’s only one more week, but I had been having treatment for 24 weeks. At 5pm, I dragged myself out of bed where I had been wallowing in pity and Marcie and I took the dogs to the beach for a walk - the best thing to shift my bad mood and clear my head. We got to the beach as the sun was disappearing, it was warm and still and the water a beautiful teal. An enormous full moon was rising over the waves and the sky was beginning to blush with the pinks and golds of the coming sunset. As we were walking back up the beach towards the carpark, a lady called to us to look out to sea. A pod of whales had rounded the headland quite close to the shore and were breaching and splashing around in front of the giant face of the moon. We left the beach as the light faded and the whales continued south along their journey. As we drove home around the shores the sunset bathed laked, a kangaroo hopped across the road in front of us. It’s hard to stay sad sometimes.

I was going to share the series so far after my final chemo. It seemed like the perfect time do that. I have decided to wait until next week to share it now. I have built up sharing the series in my head way too much. I am so nervous and it’s not even a big deal.

The next morning, Marce and I woke up early and drove into town to grab a coffee. We sat at a local look-out and drank it, looking out at the sea. At 8:30, I ran the flowers into the hospital. I can’t express in words how important the oncology nurses have been along this journey. No matter what, they’ve shown kindness and compassion to every patient that comes into the ward, taking a personal interest - doing everything they can to make each person’s experience of a pretty rough time that little bit easier. I struggled with the words to say thank you. They didn’t seem enough.

Mid morning, the spring weather disappeared and a cold, wild wind blew over, bringing driving rain. The weather seemed to reflect my mood. I spent the day, trying to sort through my belongings that were packed in boxes and stacked to the roof. Over the last few months, as I’ve needed things, I’ve pulled them down and unpacked them haphazardly - my things are everywhere. I haven’t had the strength to go through them and organise things and it’s been incredibly frustrating. Mum and Marcie did a wonderful job of packing when I moved from Newcastle and was way to sick to help, but I don’t know where anything is. It’s hard not having my stuff. We got a lot done today before I ran out of stamina.