The sadness remains but the fear is gone
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This story discusses terminal illness and death. If you're in crisis, call Lifeline on 13 11 14 or find more contact information on our Resources page.
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Can you recall your earliest memory of death?
Honestly, I think it was the stampede scene where Mufasa dies in The Lion King. Mum reckons she got a phone call from my daycare, asking her to come and get me because I was hysterical after watching that movie.
You recently lost your partner Nath. Can you tell me a bit about your relationship with him?
We met in 2019 when I seemingly slid into his DMs to ask him to design a logo for the band I’m in. Unbeknownst to me, he kind of already had a thing for me so a few months (and a blurry Meredith Music Festival) later, we were together. Cue pandemic and cancer and about 15 months after that we were married. He was my guy. With the biggest heart I've ever known.
Can you tell me about your experience with anticipatory grief? How did it differ from the grief you feel now, after his death?
In a nutshell? It’s hell. I tried so hard to enjoy the time that we had together following his diagnosis but you can never quite escape the reality of terminal illness and what it means. I spent half my time sad for him and half my time terrified for the future; all the while attempting to compartmentalize everything to be able to live and love him as much as I could.
The big difference is the fear of what’s to come. I was sad - I still am sad. The sadness remains but the fear is gone. As arrogant as it sounds, I don’t fear much these days. When you navigate a team of surgeons at 4am after a night in the ED as your loved one writhes in pain on a fentanyl drip, as they tell you that you need to give consent for emergency surgery if they’re to live any longer; when you realize that their cognitive ability has started to fade without them even noticing; when you sit beside them for 15 hours as they die in front of you... Nothing else seems very scary.
Were there any challenging times prior to Nath’s death that you feel helped prepare you for it?
Absolutely. I had bad days, I still have bad days. I leant fairly heavily into meditation and mental health podcasts whilst in the thick of it all (mind you, this was also peak 2021 lockdown so that didn’t really help things). Being able to recognise and label my emotions, identify where they’re coming from and what I need to do to live in peace with them has been a huge help. Therapy helps too. It did for him, he was seeing a psychologist and psychiatrist and was a big advocate of them.
Could you tell me about your memories and experience of the time surrounding Nath’s death?
About a month before he passed, Nath had a fall that saw him taken to the ED and he subsequently underwent his third brain surgery to install a second shunt. By this point, his cognitive abilities and motor function had started to decline, and by the time he returned home from the surgery, things had escalated tenfold. He required full time palliative care so between myself, my family, his family and nursing staff, we looked after him for about three weeks.
Everything from administering medication to showering, he needed someone with him at all times. He couldn’t walk unassisted and because of the multiple tumours on his brain, he also had no idea what was going on, kind of like what I imagine dementia to be like. He sometimes didn’t recognise me. I remember giving him his morning meds once and he smiled at me with his big grin, thanked me and asked if I knew his wife, Bella. I said I sure did, that I heard she was a bit of trouble. He chuckled and agreed.
When he returned from that last surgery I was also told that Nath had developed leptomeningeal disease (cancer in the cerebrospinal fluid and leptomeninges, the membranes that surround your brain and spinal cord), giving him a few weeks to live. So, I knew there wasn’t much time left. I'm glad he didn’t know. For the most part, he was happy in those last few weeks.
I’d also just started a new full time job, which meant that at times it was difficult to disassociate my personal life from work. I have the utmost respect for long term carers who juggle their jobs and their loved ones for years on end. It’s hard, mentally, physically, and emotionally. It’s so, so hard.
Eventually, it wasn’t safe for us to keep him at home anymore so we took him to the hospital in the hope of getting him into respite care. He passed three days later.
What were the next few weeks and months like for you after he died?
Pure adrenaline. I’d been living like that for a while so it just kind of continued. Eat, sleep, do what you need to get through the day, repeat. We planned his funeral and I went back to work a couple of weeks later. Autopilot mode. No emotion, just doing, surviving.
Then came the death admin which I don’t wish upon anyone. Having to retell the same story over and over, bureaucratic red tape to close accounts, transfer funds; all whilst in a haze of grief. The worst part is that no matter how much anyone offered to help, only I could do it. Legally.
I don’t know that I really processed everything properly, which isn’t ideal. Eventually, the cracks started to show. When the dust settles and all that’s left is you and your grief, there’s nowhere to look except right at it. I’m still working on that.
How do you think Nath would like people to remember him?
Aside from as a ripper cyclist with impressive facial hair, he would’ve wanted people to remember his kindness, his generosity. He would’ve wanted his mates having a beer for him at all the punk shows, trying for various KOMs around Melbourne, enjoying life for him and with him in their thoughts, spurring them on.
How do you even begin to return to ‘normal’ life after such a devastating loss? Do you think ‘normal’ ever exists again?
‘Normal’ is an imagined concept. There is no such thing as normal. The essence of life is that it’s constantly changing and through lived experience, we evolve with it. I’ve thought that for a long time. If anything, the last two years have driven that home.
What changes did you notice in your other relationships after Nath died?
I grew a lot closer to a bunch of people throughout the entire period of Nath’s cancer and death, people who were there when we needed them. There are a lot of people who I feel like I can never truly thank enough for what they did and continue to do to support us. For that, I'm eternally grateful.
I also feel like I pushed a lot of people away. I struggle with asking for and accepting help and sometimes think I can do it all on my own. The consequence of that goes beyond burning the candle at both ends. I didn’t let people in, thinking it was my cross to bear. That it was too heavy to expect others to help carry, so the expectations I put on myself were that I had to do it all on my own. Like a lot of things, I'm still working on that too. I want to bring those people back into my life and let them know that I do appreciate them. That I do love them.
How has Nath’s death impacted your approach to life?
I think about Nath every day. I think about his strength, his tenacity. That inspires me like nothing else. I try not to sweat the small stuff and don’t have much time for petty crap. You hear of people falling out over the smallest things and think gee, you’re going to die one day, then all of that stuff will be irrelevant. I say, live your life as best you can without negatively impacting others. When things get tough I often think, if I can get through all that, I can get through anything. It helps a lot.
Have you spoken with a therapist? If so, how has it helped?
Yeah. I still don’t feel one hundred percent comfortable with unloading all of my thoughts and pain onto the people I know and love. It feels too heavy, too dark. It's a hangup I have to get over because all of my family and friends are extremely open to being there for me whenever I need.
In the meantime, I can justify opening up to someone I pay to listen to me. So there’s that. Therapists are also very good at putting things into perspective and helping me see things from different angles. Helps take off the blinkers, you know?
What would you say to your past self or another person in the midst of grieving the death of a loved one?
Embrace your community. The power of the people who love and support you is stronger than anything. Also, the seven stages thing is bullshit. It doesn’t get better, you just get better at learning to live with it. Be selfish - put yourself first, look after yourself and do whatever that means for you, despite what anyone else says.
Do you have any suggestions for someone who is trying to comfort you or another grieving person?
Do it for them, not for yourself. Whatever you do, do it all to help them in their experience; not to make yourself feel better about the part you’re playing in it all. None of it is about you. Their anger, their fear, their sadness. It’s not about you. It’s something they need to navigate in their own way and you need to support that as best you can. Let them know you love them and remind them that you’re there. Don’t ask how they are, ask what they need. If you already know the answer, just do it.
Have you ever felt like you had to hide your grief? Or like your grief was a ‘burden’ on others?
I often feel weird about talking about Nath, about the last couple of years. I don’t know if people want to hear it, or if it makes them feel uncomfortable. I don’t like the pity, the awkward sympathy that sometimes comes from telling our story to people, so most of the time I just don’t. I find it a lot easier to write than to talk about it, I always wonder if people want to hear it. Sometimes I'll share things online and then it’s out there, for whoever wants to know. I wish I did talk about him more, about the good parts of our time together. I’d like to do that more, emphasize the good bits.
Have you felt any pressure to ‘move on’ or ‘get over it’? If yes, in what ways?
Not so much to move on, but I do put a lot of pressure on myself to move forward. Like anything though, if you try to progress too quickly there’s a good chance that you’re not doing it very well.
How are you feeling now? What’s giving you comfort? What’s bringing you joy?
Up and down. Generally fairly down, but you learn to live with it. I’m working toward having more good days than bad but I haven’t quite gotten there yet.
I like music. Listening to it, watching it live, performing. An outlet, if you will.
Joy in general is tough. Moments of pure joy are few and far between but I try to find it in the little things, the small moments. Having a laugh in the kitchen with my housemates, playing with the dog, moving my body and surrounding myself with my community. People give me joy, love gives me joy.
Speaking of 'moving on', have you given any thought to dating again now or some time in the future? How do you imagine that might take shape?
I used to think that I was just going to be this enigmatic widow figure for the rest of my life; doing cool things, like some sort of movie character. I’ve since realized that’s not super realistic, especially at 29.
Part of me still feels like I'm in a relationship, and part of me feels open to the idea of moving into another phase of my life where I meet someone new - but Nath is still a big part of that. I’d like to think that anyone who entered my life in that way would be respectful of that.
I can tell you right now that I'm not going to be running off to sign up to Hinge or Bumble any time soon but if someone came along and I felt a connection, I'd be open to it. I say that now... but if it did happen there's every chance I'd have a meltdown and need to write an extensive pros/cons list.
I don’t really believe in there being a ‘right time,’ for any of it. You don’t need to wait six months, six years to meet someone new. If it happens, it happens. Whenever that is. As long as it feels right.
A good friend of mine pointed out to me recently that if I ever was to start dating again that my number one wingman would be up there gunning for me, cheering me on. Nath would want me to be happy and knowing that makes me feel that bit better about the future. The last thing he said to me was, “I want you to have fun and I want you to smash it” - so I’ve got it on official order! ✿
To make a donation to the Cure Brain Cancer Foundation in Nath’s honour, click here.
Image Description: A slightly blurry black and white photograph of Nath and Bella, facing each other. They are both smiling with their heads facing down and appear to be sharing a precious, joyful, intimate moment.
