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Guest Post - Good Grief: Navigating Terminal Illness and Loss in the Perinatal Period

Please welcome Kat Bayang to the Perinatal Wellbeing team! Kat graciously agreed to share her story for the blog and her story is one of loss and life and recovery. Please know that Kat's story includes the death of her partner, postpartum mental health issues, IVF journey, cancer and grief. If you relate to any of Kat's story please reach out for support, we are here to listen. Thank you so much to Kat for her bravery and vulnerability.

Hindsight is 20/20 they say, but hindsight in my situation is overwhelming and I often wonder how I got through it all. Hey everyone, welcome to the PWO blog, I’m Kat and I’m sharing my story of illness, loss and grief in the midst of the perinatal period. Two perinatal periods to be exact.

My story starts with my partner, Dino, and I over a decade ago in London UK. When we were dating, he was diagnosed with a rare form of kidney cancer. Look, a cancer diagnosis of any kind, at the age we were then, is always going to rock your world. Thankfully, we met a talented surgeon who resected his tumour and pronounced “remission.” Fast forward to four months into marriage, we were faced with a scan that showed metastases in his lungs. Unbeknownst to the rest of the family, we were also trying for a baby and on the same day we found out about the cancer spreading, I found out I had something growing in me too – our daughter Isla. This gave Dino a fighting spirit and we always saw the pregnancy as hope. I, on the other hand, was filled with dread.

This pregnancy was not what I thought it would be. It was spent in intense anxiety, not about the baby, but about Dino’s health and the future of our family. My antenatal period was spent sitting in the chemo ward for multiple rounds of cancer meds, meetings with his oncologist to discuss plans and anxiously awaiting scan results. We felt like we had to show the world around us we were okay and ‘strong’, but internally, I was falling apart completely. It was exhausting. Dino was a wonderful partner who coped with dignity and integrity. We used to joke about how he had the best personality for a cancer diagnosis. I was a mess. I didn’t talk to anyone about it; I saved face because I did not want people to pity us. I used resilience as a coping method and made no room for vulnerability. My family were also across the Atlantic in Toronto, and I didn’t want them and Dino’s family to worry about me either.

Pause. We also renovated a whole house during this time. Apparently, I love stress.

The cancer was kept at bay for a while thanks to the chemo and medications from clinical trials. I had Isla at 38 weeks (probably because of high cortisol levels!) and had what some may call a traumatic birth, but I had no time to fixate on that (I only just felt my episiotomy scar this year). I didn’t do it purposely, but I fixated on being in the moment; of enjoying what was happening at present. I think I knew that it was all going to be taken away from me at some point, so I made sure to take notice of the special moments we had with Isla. Of course, the anxiety continued, now partnered with the anxiety of being a new parent. I often fed Isla at night in my rocking chair bawling my eyes out. I chalked it up to postpartum hormones, but really, it was the only place I felt safe to be vulnerable. I used to play in my head how I would feel when/if he died. I know now that this was also a protective measure to help soften the blow of impending death. We did manage to have two years of learning how to function with a ‘cancer cloud’ hovering over us.

We decided to have our second child, Giacomo, two years later via IVF. Dino’s cancer was passed genetically, so we learned about a process called Preimplantation Genetic Diagnosis and decided we would do this in order to ensure this child would be at population risk of cancer (and not 88%). Naturally, I felt so much guilt that Isla did not benefit from this medical advancement and a new worry bloomed that she was passed the gene. Resilience was still my coping mechanism (culturally related but that’s a whole other blog!). IVF was not a fun process – in fact, there is this type of grief you experience with IVF because you were conceiving ‘artificially.’

There is a point in cancer where you just know… as in you know it is the beginning of the end. It was during my pregnancy with Giacomo. Dino started doing Radio frequency Ablation (read: burning away tumours with microwaves) on his lungs. He was in and out of surgery and the ICU. I was pregnant and had a toddler. Thankfully, my mom came to London for long stretches to take care of me. Dino’s last surgery was just before Giacomo’s birth. It knocked him out and I knew he was losing steam. Giacomo wasn’t the same beam of hope Isla was because we were exhausted and losing capacity to fight the illness. Nevertheless, our children made us forge forwards as they do.

The postpartum period with Giacomo was filled with intense dread. Dino was in hospital for longer than expected after a treatment, and my days were filled with hospital runs with my new baby. We managed to go on a couple of family vacations, but when I was 7 months postpartum Dino started to decline. The cancer spread really fast – from walking to not in two months. It spread throughout his body like wildfire; even to his brain, causing strokes. I was watching him die slowly. Really, I was watching him die slowly for 10 years.

Dino died on August 11, 2017, 10 days before my daughter’s birthday. I was 9 months postpartum. The immediate post-mortem grief was numbing. I could not feel much at all. I pretended to connect with the kids, but disassociated for this most part. I couldn’t sleep and relied on sleeping pills for a month. Feeling numb is a wild, all-encompassing feeling – it’s was the only way I could regulate my nervous system or else it would go into complete shutdown. I wanted my world to end, but felt too much guilt about that because I had children. I watched the world go back to normal as I my world was nothing but normal. As Dino died, a part of me died too. I had to embrace new identities – widow, solo mom, grief monster. I was so lonely, so numb, so angry, so fragile. The linear stages of grief is a farce – they weren’t stages, they were happening all at once and not at all. I still relied on resilience and showing the world I was okay… but I wasn’t. I was obsessed with ‘not being whole anymore’ and had no compassion for myself and how hard my experience was. In hindsight, I probably had postpartum depression, but too proud or too scared to ask for help….

Eventually though, I did. I went for government funded psychotherapy sessions at the local hospice and it was the first time I allowed vulnerability to take centre stage. I just didn’t take care of me in the whole process, but I just didn’t know how. Who cares for the carer? I was recently told I experienced ‘prolonged death,’ which is different to other types of deaths (i.e. shock deaths or ‘in time’ deaths) and I’m still processing this in therapy. I’m also having conversations with the grief stored in my body using somatic work and therapies. My mental wellbeing has a wider definition now that I refuse to keep fixed.

There isn’t enough room on this page to explain grief and the process of living with it. Here’s a fun infographic that I think helps:

I’m still grieving and it’s okay. I have days that are great, I have days that are horrible – more former than latter now. I still fear that life will be pulled out from under me again and I will feel that intense sadness and hopelessness. I struggle with trusting the process of life. But now, I am not afraid to ask for help and to be vulnerable with people. I’m exploring my own empathetic nature, levels of capacity, boundaries and leaning into self-compassion. Resilience served me well and she needs a break. It’s countercultural to outwardly express feelings around grief for extended periods of time. Grief does not have a timestamp. We need to make space for lives that do not fit the desired timeline or mainstream tropes, which function to oppress and marginalize. It really still blows my mind that the two things we have in common as humans – birth and death – are clouded with taboo. Everyone’s experience with grief is different and I have come to understand what it has given me – a “healing through feeling” process. People who face ‘out of time’ deaths – including miscarriages, terminations, still births, infant deaths – are given new perspectives on living and loving. After all, grief is an extension of love that we carry and do not have an outlet for. It’s tragically beautiful.

Thank you for reading. If you are grieving and want someone to hold that space for your grief for you, I highly recommend reaching out for help and support. You deserve it.

To be continued….

Kat Bayang

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