an update

When writing this, I felt a duty to write it perfectly. An inner duty to represent what is going on in my mind and life succinctly. To be structured like it has an editor on staff and written as if it is a book. I got caught up in this and asked why I wanted that. Do I want people to think I’m a good writer? Or do I want them to just feel what I am going through and get a sense of what it is like to be dying? I’ve dropped the pressure of wanting it to sound like it is a book, it’s just the fucking internet and some blog. So here it is in whatever form it comes to you. 

Tennis ball head and walking 

My hair, eyebrows, eyelashes and facial hair have grown back. I have been taking a drug called Pazopanib. It is prescribed to slow the growth and activity of the tumour residing in my spine. One of the side effects is that my hair grows back with an albino-like sheen, I have blonde/white speckles in my hair that shine in the light. I don’t quite look like Julian Assange with slicked-back white hair. More like a tennis ball dropped in chlorine that is slowly regaining a natural hair colour again after drying on the grass in summer. Whatever colour it is, it has brought back a sense of physical self and it feels great. 

Over this time I have continued my walking in nature. Around home, with my dog Laika and also heading out to a lush forest track called the Sherbrooke Falls circuit. A mountainous part of Victoria mixed with suburbia, fire trails, bushwalks and lots of trees. I’ve been out there 5-6 times, mostly by myself and a few times with an old friend and also Lynn. It is peaceful, quiet and lush. There’s just the sound of the wind, lyrebirds, trees creaking and cars in the distance. 

I love these walks. I set out on one with an old friend. We reconnected a few months ago over a death in the family.  We hadn’t seen one another since the last day of high school back in November 2010. We went through primary and high school together, played in the same local sporting and high school footy teams, and lived around the corner from one another. We weren’t ever super close, but there was a parallel in our existence that made those 13-14 years between catch-ups feel familiar and close. We talked about life, death, and our experiences of getting through tough times and found some common interests in enjoying architecture and finding awe in the things we miss when we’re not looking. It warmed my heart to spend this time with him.

Other times I have headed out to Sherbrooke, my intrigue for what was down the path I didn’t take last time kept me obsessively awake. I looked at the map, marked the turn-offs, returned the following day, got lost, discovered more paths and felt free. I did this a few times. Being somewhere new but familiar enough to know how to get to the point where it no longer feels familiar is exciting. It’s pushing what you already know and finding the excitement beyond. I found a beautiful alternative route back to the car, it was a downhill lookout between people’s houses and the forest itself. The view of the city and the land was framed neatly by nature and it was a moment of awe and peacefulness. I thought “How lucky am I to experience this on a Wednesday at 1 pm”.

Getting Away

Lynn and I wanted to get away from the chemo and cancer bubble. We got through the last few months of chemo and wanted to change our scenery from beeping hospitals. We planned a few trips away. Down to Phillip Island (Victoria) and also up to the Gold Coast (Queensland) a few weeks after. 

Our trip down to Phillip Island was to just quickly get away, go on a few coastal cliff trail walks, have some nice dinners and maybe go on a whale-watching tour. I have a habit of winging it with some plans, thinking that it’ll be “alright”. Hopefulness in that it will just work out, laziness, overwhelm from making a cement plan or just a goose. Self-recognising all of them and all at once. Booking a whale tour was one of them. We are in season for whale migration and we would be in the area where they can be spotted, there was umming and ahhing about whether to book it. I thought we could see them from shore but it seemed like a better option to book a tour. Doing this at 9 pm the night before was ahhhhh not going to get us the best results, it was sold out. It’s okay, we’ll try in the morning. In the spirit of Victoria in the winter, the surf conditions weren’t good enough for the boat to go out without tourists getting sick, “I’m already sick, fuck you, who cares it’s just the ocean” I thought. We changed tact and enjoyed a peaceful weekend ashore, enjoying clifftop walks that reminded me of seeing the seaside cliffs in the South of the UK a few years ago.

A few weekends later, Lynn and I ventured up to the Gold Coast, Queensland. It was a big trip despite the short flight. A fresh experience going into a busy airport while immune-compromised and with neck pain from my treatment. I’d be lying if I wasn’t slightly anxious but the promise of warmer weather, being by the beach and Lynn’s ever reassuring smile got us up there. We landed, it was 22C, blue skies and we felt instantly relaxed.

The week was spent hanging out by the beach, watching the Olympics, drinking a few beers at the local and going for hikes we had found online. We tried booking another whale-watching tour….that was cancelled for the same reason in Phillip Island. However, we were 100m from the beach and spent every few nights watching the surfers take on the huge waves and spotted about 5-6 whales swimming behind them. It was another moment filled with awe that made my heart warm and grateful to be sharing it with Lynn.

We went on a walk in Tambourine National Park with some friends, a loop followed up by lunch and a beer at one of the best views at pubs I’ve ever been to. The St Bernards Hotel. Named after the 5 St Bernards dogs they had residing at the venue. The pub was placed up high up in the mountain range, with a swiss-alps-esque cabin feel looking out across the beautiful valleys and trees. Peacocks were wandering around, the sound of native birds and the sun coming through and it was a beautiful memory. The dogs were crazy though, they blocked paths getting to the bathroom and looked pissed off that 200 people were in their house. All part of the experience. 

Back home

Upon coming home, I felt a rush and excitement in my ability to travel. I was inspired to book a ticket to Bali, hang out in warmer weather, sink a few beers by a pool and hang out by rice fields. I was looking up insurance, flights, places to stay and also the possibility of getting to spend some time with some family friends who would be there at the same time was very exciting!

About a week after we got back I had some regular scans booked in (PET + MRI). In the lead-up to these scans, I began to feel some increase in pain in my arms, neck and hands. Some new pain in areas that hadn’t come up before as well, so these scans were well-timed. I had my PET scan in the morning and before I could get over to my MRI scan I was getting calls from my oncologist asking about my pain levels, I had my MRI scan, made it back home and was called back into hospital for pain management immediately. I spent 2-3 days in the hospital getting dosed up on heavy painkillers and steroids to work on reducing the pain and to discuss the next steps. I had imagined what the next steps were to look like while thinking to myself “We are heading into this next stage right now aren’t we Dugald?”. 

The next steps presented were ticked off with the oncologist and neurosurgeon. 

• Do we give you another surgery? “No, the time taken to heal and recover from surgery (9-12 weeks) would not provide sufficient quality of life.” 

• Do we do more chemo? “It wouldn’t be effective”. 

• Do we do radiation? Yes! “This can help provide some size reduction and reduce spinal cord compression”. Radiation it is! I did radiation back in Nov-Dec 2022. It was a walk in the park.

I was back in the ward I did my chemo on. I remember during my chemo lying awake during the night and the day, seeing the big development of new train stations being built outside. Each cycle I did it was a little bit more developed. On this admission to the hospital, the construction was almost complete, there were more roads open, fewer trucks and noise. A road that was previously completely blocked off is now open. It reminded me of a cavernous mountain or glacier that has cleared all of its ice from winter and you can see its nakedness in the grey rock or this case the road. I like noticing these things, they help pass the time and make me feel free.

No Bali for now, but that is okay. If it ends up being the dream, the idea and the courage to ponder a trip, it has given me hope and that makes me happy. Serenity and calm will be wherever I want it to be.

I had the weekend to prepare and get ready before radiation. By this point, I was fairly dosed up on Dexamethasone (steroid) and Endone (painkiller). The combination of these two drugs had knocked me out; limited energy, reduction of sleep, change in appetite, change of mental awareness and irritability. It had been a tough few days coming to the realisation that I was entering this next stage of the journey. My mind was erratic, panicked and I felt angry at things I wouldn’t usually feel angry at. 

Throughout the week I have gone from opposite ends of the mental scale, the steroid above can make you crazy. On my drop-offs to radiation, there is a very convenient 2-minute drop-off zone where I can easily be picked up and dropped off for treatment. It is usually occupied by taxis who are just sitting and waiting. I felt pissed off that sometimes they were just there, it was not a taxi rank after all, not bothered that they are blocking a path.

I daydreamed about stealing one of these taxis on my way out of treatment, not in a rampageous way but more of in a funny protest way. The thought about stealing the taxi blocking the convenience designed for people like me, driving myself home or just picking up passengers and driving them places for free made me laugh and distracted me from what was ahead. This doesn’t make much sense I know, these taxis are there picking up people from treatment as well. I thought about how I could explain to passengers that this fare is free and if they were to be unsettled knowing that someone with terminal cancer just felt like stealing a taxi and if they were to trust that I wasn’t crazy, just calmly unhinged and giving them a free ride. I thought about the sort of people I could pick up, their reactions and my possible news headinling arrest “Terminal Cancer Patient Steals Taxi and Drives People to Airport For Free. Tonight on CHANNEL 9”. 

My thoughts turned to who would feel okay about it and I thought about my friend John who I used to work with, I imagined picking him up from work and saying “John, I drive this taxi now and I am driving you home”, in his calm and caring demeanour I knew he would think it’s crazy but trust it and go with it. I imagined driving him home, stopping off to get something to eat at Preston Market, having the best chat and then leaving the taxi with the keys on the seat somewhere convenient, undamaged and with a full tank of fuel. Thank you John for coming into my mind to settle these crazy thoughts. Dexamethasone is a helluva drug.

The pragmatic side of me wanted to rush out of this swiftly rather than just sit in it and wait it out. It has taken a few days for this feeling to settle. It has passed now, I’m okay, no taxis have been stolen and I laugh at how this could have crossed my mind. It felt rationally irrational or irrationally rational at the time. Ah well.

My doctors advised slowly weening off the drugs (don’t even need to be a doctor to agree with this after reading that last few paragraphs) and it has helped, each day has felt a lot lighter and I’m able to write this feeling like I am going just fine. During the week my mum asked me “Are you scared?”. I replied, “I am not scared to die, I am scared to lose my mind before I do though.”

What’s next?

The last week of the radiation treatment also included commencing Voluntary Assisted Dying conversations. They are conversations you can only commence at the 6-month or less prognosis point. It is something I have advocated for from the day I got my prognosis on my birthday at the start of the year. There is a chance I could lose mobility in my arms and legs from this tumour and I wanted the choice and agency to call it when I am ready and am so lucky to live in a country that can facilitate this. It is an option and a choice if and when I need it. The conversations with specialists were sobering and real, there were a few tears but it felt like I was nailing the most important job interview of my life. I was proud to talk through my decision-making calmly and my need to maintain this independence in choice. The conversations were very human, supportive and holistic.

I knew this next part of the journey was unavoidable, I didn’t expect it to be this soon I felt embarrassed to feel like I was losing my mind, but that’s a normal human reaction to the circumstance, you can’t prepare for it, you think you can but it hits you out of nowhere harder than you thought it would. Tomorrow is a new day and I am confident that this radiation treatment will be able to alleviate pain, I will be able to get out on walks and feel free.

As I mentioned in an earlier update, “With all this ahead of me, I have no choice but to lean into the wild ride ahead. There is no winning and there is no losing, there is only existing and feeling everything as it comes. There will be lots of happiness and light in all this craziness.” I’m going to follow this again and some of the bits and pieces I have shared below.

Below are some mantras, phrases and things I have said to myself over the last week or so. They have helped strengthen and galvanise some strength and pick me back up: 

I am confident in my spirit to be strong enough to endure whatever lies ahead.

Dropping all expectations and welcoming everything as it comes helps.

My duty is to be calm and grateful for whatever time is left earthside. Doing this I know will help lower the distress. Make the most of what you can, in the times you are by yourself and with others. Whatever comes up though, whether that be; anger, fear, sadness, elation or happiness, let it come up and experience it.

I am capable of enduring any physical pain ahead of me, it is all temporary. in some ways having the guaranteed ending of death ahead of me, leaves me feeling quite peaceful and serene. It is a privilege to have the awareness of what is finite.

I am grateful for the quietness of the home and environment I live in, and the people who have shown up with love, compassion, messages, food and kindness. You have made all the difference.