my story
This story begins with one of the kindest and most unassuming women you’ll ever meet- my Aunty, fondly known as Unnie. She’s like my second mum. One day when visiting me in the throes of bustling life with 2 young children she said quite apologetically while touching her neck “Katie I don’t mean to be rude, but have you had your thyroid checked? It just looks… it’s a bit larger, that’s all”. I had had a miscarriage the month before and believed I’d had basic thyroid levels checked but wasn’t certain. I hopped up and went to our room with floor to ceiling mirrors. How had I not noticed this lump before? It was significant. I extended my neck and the lump extended its hands as if to welcome itself into my life.
I saw my GP a couple of weeks later who agreed that it was abnormal and referred me for an ultrasound. There was no concern with this but suggested it was a reasonable size, around 4cm x 5cm. With this information at hand my GP suggested a biopsy. It must be the health professional in me but I thoroughly enjoyed watching the ultrasound screen showing a needle being repeatedly poked all over the nodule in my neck. Again, everything seemed fine. My GP wanted a second opinion and referred me to a surgeon.
Visibly enlarged thyroid gland (March 2021)
I met with him rather quickly. 2 doctors I could’ve seen had a 12 month waiting list, however this doctor had a cancellation I could attend in 2 weeks. I wasn’t sure what to expect having not been on the patient end of the stick for over a decade. He immediately recommended surgery, a hemithyroidectomy, that is removing the right half of my thyroid along with the nodule embedded in it. He wasn’t concerned by either my ultrasound or biopsy but discussed that the size of it wasn’t a positive marker. That, and the fact it was affecting my breathing and swallowing were signs that it was better out than in. It wasn’t going to get smaller and I could probably function well, without medication, with half a thyroid. Surgery forms in hand, I filled out my medical life story, slightly bewildered that this was where I was heading. In some crazy world, and the first time being booked for surgery as a public patient, I only had to wait 5 weeks.
My surgery date came and fortunately working in a hospital helps to make the process much more comfortable. You know the roles individuals hold and are often treated as ‘one of us’ because it hard to hide your profession. I’ve also had multiple surgeries so there’s not much that is surprising about it. Surgery was nonchalant. Some moderate swelling which lengthened my stay in recovery due to risks to your airway but otherwise ok. I was reunited with my hubby and breastfeeding 12 month old soon enough. Before discharge my surgeons registrar informed me that all had gone well, there were no complications or concerns. The nodule appeared non-malignant but was sent to pathology regardless.
Rooming in with my daughter after my initial surgery (March 2021)
2 weeks post surgery I had cold like symptoms and felt tell-tale kind of off. I knew I was pregnant. The 2 lines on the stick just confirmed it. This baby was in the forefront of my mind. Nothing else could compete with it. When my surgeons receptionist phoned and requested my appointment be brought forward by a week I politely agreed, as if I was doing them a favour, and exasperated that I’d need to bring my daughters with me as I had no one to care for them. It’s a total ride taking kids to appointments at doctors rooms- climbing chairs, moving hanging paintings, pulling out fake flowers. Why can’t we speed up specific moments in motherhood? We are taught we should be grateful for every specific moment but that is rubbish.
Finally! In we all went. The rest is much of a blur. Something about surgery all went well. Balloon blown up for one kid. Something about scar looks good. Something about you have cancer. Balloon blown up for second kid. Something about it’s the best kind of cancer to get and if you can choose one, this one is the one you want. Someone’s balloon pops. I can’t help but think no cancer is good and I don’t want to choose one. Something about surgery to remove the remainder of my thyroid, lifelong replacement medication and radioactive iodine treatment in Sydney. I interject- “I’m 6 weeks pregnant”. One kid trying to pull files off the wall. Pause. Congratulations given. We plan surgery for 2.5 weeks after my due date and treatment a month after that. I’m advised to notify him if I birth sooner so that surgery can be brought forward. We grab remaining balloon and exit. The waiting room looks different now. Suddenly you remember how much you truly don’t know about those you see around you.
We get in the car. One kid is overtired, one hungry, someone wants shoes off, nappy change for the other. It’s sprinkling rain. I’m mothering them and I need to mother myself. I just need them in their seats and then I can break. It’s my turn to sit in my seat and as I do, my head hits my hands. The tears flow. I’m a 29 year old mother of 2, 6 weeks pregnant, recently had surgery and now with a cancer diagnosis. Shit.
The most magical secrets I’ve ever kept have been my children in early pregnancy. It’s hard to describe how incredible it is looking at the world around you, still spinning, yet no one knowing that you hold the world inside of you. This day, however, was miserable, not magical. With one kid asleep and the other occupied by ABC kids, but acutely aware that mama was crying, I did a quick Google of radioactive iodine treatment. Incompatible with pregnancy. Incompatible with breastfeeding. The tears flooded. I was ‘still’ breastfeeding my 2.5 and 1 year old daughters. It is a critical element in how I anticipated mothering my children. The thoughts running through my mind was like watching Usain Bolt lost during a race, recorded and the image skipping out.
Quintessentially, as an advocate for woman’s health and a professional providing breastfeeding support, if there is one thing I try and do more than anything else, it is encourage autonomy through informed decision making. Suddenly having the decision taken out of my hands is what hurt the most. I couldn’t even breastfeed for the first week or so, I needed to fully wean 4-6 weeks before treatment. That meant never breastfeeding this baby. I thought about donor milk and if I’d be able to ever avoid formula for my baby. Neither daughter ever had a bottle but I’d have to navigate motherhood bottle feeding. So much of breastfeeding is about much more than feeding. I have no idea how to parent without boobs. I learn that I’d need to be away from my children for at least a week, or two and potentially not hold my newborn due to radioactivity that could permanently damage their thyroid or give them cancer. Well shit. Surely there’s another treatment option, because this frankly sucks. And then all of a sudden I’m subconsciously pulled back by the restraints society places on us, places on women and mothers. I should be grateful for formula. My baby will be fine regardless of how they are fed. I should be thankful it’s a slow growing cancer, thankful treatment isn’t chemotherapy, thankful I’ve been able to breastfeed my other babies, thankful for alternative feeding options. That’s the thing though, grief isn’t black and white, it’s a trillion shades of grey. I know you can feel immense grief and gratitude at the same time and I wasn’t going to apologise for sitting in this space, even to a lesser degree a year later.
I messaged my husband asking “Will you be home at normal time today?” which was only a few hours away. In this typical maiden, oestrogen dominated, people pleasing stage of life I didn’t want to burden him. The narrator voice in my head can’t help but call myself an idiot. I’m the one with the cancer diagnosis here, I’d want to be bothered if my husband was in the same predicament. With no reply almost an hour later I sent another text saying “I need a hug”. He called and I couldn’t answer the phone. It was as if my body froze, or maybe it was my voice. It wasn’t unlike me to not answer my phone. Two young toddlers means occupied hands and minimal time to chat. He called again, and again. Eventually I called him back. He asked if I was ok. “Yeh… I’m ok” I said very unconvincingly. Exasperated and frustrated he told me he’d left his job site and driven a 30 minute trip to check on me. I apologised. Angry, and only around the corner from home, he said he’d see me in a minute. Beep beep beep. I burst into tears. The greyscale of grief is overwhelming. I couldn’t handle a diagnosis let alone his emotions too. What I wasn’t anticipating was the burden that was going to come with telling others. I still feel the weight of it and as much as I know I shouldn't have to hold space for someone else’s reaction to my situation, it’s almost an expectation.
He opened the door, still frustrated and saw me crying. “What’s wrong? Are you ok?”. And in seconds I saw my 6 foot husband collapse into my arms, barely able to form words through tears, apologising for being so mean on the phone just prior. I think about that moment now and how scary that must’ve been for him. I promised him I’d be ok. I told him all the good things about a thyroid cancer diagnosis and asked him to trust me. In that moment I had to carry him. What I needed from him over the months to come was for him to carry me. I’ll forever be thankful for every moment he held my hand, stood by me, kissed my head or prayed for me.
Telling my mum was equally as hard. I phoned her. She’s a 2hr drive away and always texts after appointments to check everything has gone ok. My replies are usually boring so this was a remarkable day. I can’t remember a single thing I said or she said. I just remember imagining how I’d feel if one of my daughters phoned me with the same news. Crushed, angry, fearful, willing.
I booked an appointment with a recommended oncologist. A female, someone who ‘should’ understand and appreciate my situation. I knew that most people with thyroid cancer never saw oncologists as it’s primarily managed my endocrinologists, however I wanted to exhaust all my treatment options and discuss it fully. I was hopeful that there was an alternative to radioactive iodine that was compatible with breastfeeding. I first met with the oncologists registrar who was kind and informative but in hindsight, still clearly learning. He discussed our case with her and she came to our room to meet with us. I had a horrendous experience in that room and felt truly worthless at the hands of a fellow health professional. I felt bullied, coerced and criticised. I was asked if my only objection to radioactive iodine was so that I could breastfeed. I heard “You’ve breastfed your other children, this one will be fine”, “What are you trying to achieve here?”, “Do you want to be here for your kids long term?”, or my favourite one, a question posed to my husband when I disagreed with a comment she made “So what do you think about all of this?”. If looks could kill she would’ve been in smithereens.
A few weeks later I saw a radiation oncologist because frankly, I was willing to put myself through anything to better my child. He was incredibly kind and politely said at 29 years of age he wouldn’t touch me. External beam radiation increases your risk of cancer by 1% every year. All I wanted throughout it all was a discussion and an exploration of my options, but it seemed like I had none.
Making the most of the mundane aspects of motherhood, tandem feeding my daughters knowing our Son wouldn’t have the same opportunity
Finally, I met with an endocrinologist. Fortunately she was a mum, who had also had her children close together and she breastfed them. She could absolutely appreciate the heartache in my situation because for anyone else, thyroid cancer treatment is much simpler. I felt seen and heard. The treatment I didn’t want was what I needed. It was unavoidable. The plan for surgery remained the same, and the results of the thyroid pathology would determine the timing of my treatment. If there was signs of spread, treatment would be immediate, however if there were none, I’d be afforded 12 months to breastfeed our baby due to the slow growing nature of thyroid cancer. The risk of not breastfeeding him outweighed the benefit of immediate treatment for me.
Amidst all of this we didn’t share my story with many people. We shared my pregnancy because I wanted that to be the focus. If this was going to be my final pregnancy, I wanted it to be as joyous as possible. Some of that joy had already been snatched but I could control how much more was up for grabs. I was also very quick to learn how exhausting it was to hold space for others emotions about my diagnosis. Honestly, telling my husband and mum was enough. Holding them and telling them I was going to be ok took more than I had. I never really felt held in my grief by anyone until they had processed theirs. So quickly, I decided I didn’t mind who knew, but I wasn’t going to be the one to tell them
Covid-19 meant that at times I was unable to access essential services to monitor my health. It also meant that my surgery for a completion of a total thyroidectomy and lymph node removal was canceled. I aways knew there were people far worse off than me, however I can’t help but wonder what the long term health consequences are for those in our society- those who couldn’t or had delayed access to GP’s, testing, specialist services, diagnosis and treatment. Some of these are minor, while others will kill you. The weight of this always played on my mind, not for myself, but for everyone else.
On the 20th November 2021, I birthed our son Tommy at home in what was one of the most challenging days of my entire life, but one that was a true catalyst of metamorphosis. On that day his birth gifted me the final blow that opened my eyes to just how powerful and capable I was. 2021 had been big, and while I had cried my way through it, I had conquered it. Not with peace, but rather with unrefined grace. 12 days after his birth I had my surgery. Recovering from the first surgery was hard with a 2.5 and 1 year old at the time. Now I had a 3.5, almost 2 year old and very fresh newborn. There’s no opportunity to put a movie on and sleep through the recovery phase. Fortunately, in the complete opposite scenario to my initial follow up appointment with my surgeon, the pathology from my remaining thyroid tissue was boringly normal. What this meant was that I have the option to delay treatment for around 12 months, potentially a little bit longer. I knew that I wouldn’t be able to breastfeed long enough that Tommy could naturally wean, but 12 months is remarkably longer than not breastfeeding at all which I was originally told. One thing I’ve really sunk into over the last 12 months is feeling the juxtaposition in my emotions and shutting out the pressure to pick a side. I’m thankful I can breastfeed, but grieving the time that will be taken away from me. I’m thankful for treatment but hate how it’ll affect me and my children. I’m glad it’s highly unlikely to be a cancer that will go on to take my life but I’d bloody well rather not have any kind of cancer to start with.
Moments after birthing Tommy (Photographer Kassie Callaghan)
3 days after my second surgery and 2.5 weeks postpartum with my 3rd child (December 2021)
Throughout the grief though, there has been joy. This story would’ve been a lot simpler without a pregnancy and Tommy. I would’ve weaned Hallie, our second born sooner than otherwise and we would’ve had a bigger gap between our second and third for treatment. However I truly believe God gives us what we need to handle the path laid out before us. While I could’ve done this journey without Tommy, I wouldn’t want to. I was pregnant with him before it all turned south so I didn’t conceive him to ‘save me’, but his existence has made aspects of this journey so much easier at times. His birth alone showed me how powerful I was. He’s shown me love, warmth and grace like I couldn’t imagine. I cry embracing him or most commonly, when he locks eyes with me and smiles. I wouldn’t want to do this journey with anyone else. I wish it was different but I know everything will be ok. I imagine adult Tommy and how proud he will be of me for navigating this season and truly doing my best. I’m proud of myself- I have 3 children under 3.5, I’m a wife, midwife, small business owner, soon to be university student, managing a cancer diagnosis and treatment. The treatment has rendered me exhausted and vulnerable in many ways. I am learning to manage my new life devoid of a thyroid and reliant on replacement medication that has many faults. I’m thankful to not be walking down a path of chemotherapy or radiation but I’d prefer to give a less essential body part to cancer.
So as it currently stands, I’m currently walking the path of monitoring in 3 monthly increments. I know that at each point in time I am either reassured that I can continue with life as it is, or plan to wean and spend 1-2 weeks away from my family for treatment. There is weight to the timing of treatment, one which I am working through and struggling at times, but one that is made easier as I feel the grace and love from Tommy when I look into his eyes. He unequivocally needs me, but it often feels like I need him more than he needs me. I love him differently, and I think that’s because I’ve always loved in the absence of cancer. Maybe that’s what cancer came to teach me- to love deeper, beyond measure, to give beyond oneself but to hold space and demand to be prioritised for the good of oneself and my family. It’s teaching me to be vulnerable, to sit in place of dichotomy and find solace. It’s reminding me of my faith and how I hold no fear, just heartbreak as I am warmly welcomed to a club I never wanted to join.
P.S. F you cancer.
My son-shine who I think I have needed more than he has needed me in this season (Photographer Leave Them Wild)