Month: March 2022

You can love being a stay at home mum, and desperately need a break. You can be intensely grateful to be a mother, and miss who you were before your child entered the world. You can be grateful for what you have, and have goals for the future.

Recently, I was asked by my psychologist why we tried for another baby after Mackenzie died. The decision making was complicated. I knew it was going to be the most terrifying thing I’d ever chosen to do. Anything good coming out of Mackenzie’s death felt repulsive to me. How could we have another child if the only reason they would be there was because Mackenzie wasn’t. We could never replace Mackenzie and certainly wouldn’t want to. I was terrified I wouldn’t love them enough – or worse, that I would love them more. What if I had a boy? What if I had a girl? What if the same thing happened to this baby, or something else terrible. It boiled down to the fact that I would regret not doing it. I would regret my fears stopping me from future joy.

You can miss the child in your heart like a chasm has been permanently carved in your chest; and not be able to imagine life without the child in your arms.

The night Mackenzie died, and every day since, I felt my life split in two. Before and After. Often, I tried to imagine what my life would be like if she hadn’t died. Instead of walking into the hospital morgue with a dead newborn and leaving with empty arms, I would be walking into the NICU. Instead of waking in the morning and realising it wasn’t the most horrific nightmare, I would still be waking to a nightmare but she would be alive. Instead of attending my baby’s funeral, I’d be attending appointments to learn about what was wrong with her and the treatment pathways. As time went on, the ‘what ifs’ became murkier.

You can miss the life that could have been, and be grateful for the life you have.

My expected lifespan is still very much a rough estimation. My understanding of what my Oncologist told me was 5-15 years. That is a huge difference in the life of a young child especially. That’s the difference between Willa barely remembering me, or having me around through most of her high school years. That’s the difference between Hazel starting Intermediate school, or celebrating her 21st. It’s the difference between possibly being around for Tayla’s wedding and her becoming a mother (if she chooses those things) or not. It’s the difference between making Greg a widow in his late 40s and his early 60s. I could also live to old age.

I can be grateful to have a slow growing cancer and that life is measured in years rather than months, and pissed off it’s rare and hard to treat with a vague prognosis.

Most of all, I can hate that I’ve needed to be strong, and love that I’ve been strong enough.

I swing pretty badly between not wanting to be that person walking around with no eyebrows, no hair and wearing a headscarf – and wanting to own it, share my story and hopefully raise awareness for ovarian cancer.

I’ve lost sight of me. I’ve had two times in life now where I’ve had things happen that I wouldn’t wish on anyone. Things out of my control. Each time I’ve struggled to maintain ME.

Maintaining a sense of self outside of being a bereaved mother, or a cancer patient is hard. The resources that go into everyday life take all that you have. When you add on intense grief, or a life limiting cancer diagnosis, survival mode kicks in. Each came with fatigue. Intense fatigue. A loss in mental resources.

I think the best way I can describe it is starting the day with my cup half full. Ideally, we would all start the day with an empty cup. As hard things happen (like dealing with the reaction from giving your child the wrong coloured cup with milk at breakfast, or choosing the wrong clothes to wear for the day), forgetting something important like sports uniform for school drop off, explaining to your children how important it is to brush their teeth for the 5th time that week (and it’s Wednesday morning) – your cup fills up bit by bit. Maybe it’s a big meeting at work, or a discussion with a staff member you’ve been dreading. Less life stress gives you a lower starting point – your cup is emptier at the beginning of the day. Maybe you start the day with your cup almost empty. So it takes more stressors throughout the day to make you lose it/flip your lid.

I start the day half full, and it fills up pretty fast. The extra stressors feel harder at the moment. The fatigue is overwhelming. The brain fog is intense. And I won’t share with you all the bodily challenges I’ve got (mentally and physically). So there’s no capacity left to just be me. The closest I get is visiting my cancer psychologist – which has been amazing.

I think the reason I’m so keen for chemo to just be done with is so that hopefully the fatigue subsides and I can be ME again. Have more energy and mental capacity to work on me, and what is important to me.

There’s so many things I want to work towards, but the lack of energy to do anything more than survive is a really big challenge at the moment.

Bring on the end of April! Hopefully I’ll be skiing and tramping and learning to knit and play the uke before you know it 👊🏼