Pauline was 37 weeks pregnant with her second daughter when she discovered what she thought was a mole, was in fact a melanoma. Pauline shares her very candid story, and the top ten things she learned when she was diagnosed with melanoma.
I find mornings often go by so fast that I don’t have time to catch my breath. Nappy change, bottle, breakfast, a power struggle with my strong willed two-year-old about what snacks she can have despite having two bowls of cereal, another nappy change and they we’re off. So, sitting here while my two daughters are asleep, I realise that I’m still grappling with what has happened to me so far this year.
It’s been nine months since I found out a mole was in fact melanoma. I was 37 weeks pregnant with our second daughter. Despite, undergoing an operation when my baby was a mere two weeks old, as well as the reassurance based on the depth of my melanoma, I was low risk for it to spread, that’s what it did. The melanoma spread to a nearby lymph node, and boy oh boy did our lives get turned upside down!
Ignorance is not bliss. Despite my healthcare background I wouldn’t have been able to recite to you the risk factors for skin cancer. I was and still am a strict sunscreen applier and shy away from the sun in summer. My best friend recalls one day in the middle of winter I made her put sunscreen on before we went for a walk. For me, preventing sun damage and thus wrinkles were at the forefront of my mind.
37 weeks pregnant, late on a Friday afternoon, I received a phone call that changed our life course.
So, you can imagine my shock, horror and grief when told I had a melanoma. 37 weeks pregnant, late on a Friday afternoon I received a phone call that changed our life course. As I sat outside with my daughter and my sister, my face dropped, and tears sprung to my eyes. Later that night when reading the bedtime story to my daughter I cried uncontrollably. This wouldn’t be the last time I held one of my daughters in my arms and cried.
We welcomed our second daughter just before Christmas and two weeks later I was in hospital having a large segment of skin where the melanoma was removed (wide local excision). I debated back and forth about having further testing to the nearby lymph nodes however nursing a two-week-old baby I felt it was too challenging to go through radiation exposure and an overnight stay in hospital away from her. I still believe this was the right decision for me at the time.
When I found a lump next to the scar two months later, I had what can only be described as a sense of doom. It was the exact same feeling I had when I lay in bed one night and said to my husband, I think the mole on my neck is melanoma. It was something that crossed my mind and in one week I had two people tell me that I needed to get the mole checked, I knew this feeling I’d had was not something that I could ignore anymore. But that’s the thing that happens when you become a mum, your needs start to get pushed way back on the priority list?
In some ways these two moments have been like a moment of clarity, I knew there was something wrong and the impetus to do something was overwhelming.
So, it started, an initial scan and biopsy. This was followed on by another biopsy, an MRI and PET scan. I had to abruptly stop breastfeeding our newborn daughter and transition her to formula. For our last breastfeed I put on some classical music and nursed her whilst crying. It was beautiful and sad at the same time. Never one who felt strongly for or against breastfeeding (fed is best), this was the first element of control that was being taken away and it hurt.
Fast forward to now and after two rounds of immunotherapy (two different medicines) and a neck lymph node dissection I am cancer free. To get to this point has been an emotional rollercoaster. I have cried emptying the dishwasher, on the couch talking to my husband and even when out walking my daughters in the pram. I’m pretty sure those driving past thought I was just another mother who had had a rough night and no sleep. I’m on the other side of treatment, now cancer free (and fabulous). However, as I work through processing what has happened it has become apparent that there are so many things they don’t tell you when you get cancer.
Here’s my list:
1. It’s a mental and physical marathon
In many ways it’s like a marathon, both physically and mentally. Like my husband said when we got our first diagnosis, we’re lined up and he is ready to start the race. Whilst my thyroid inflammation has me on medication and the immunotherapy rash hasn’t gone completely it’s been managing my mental wellbeing that has been the greater challenge in this race.
2. Telling others your diagnosis is exhausting
Firstly, telling people about your diagnosis, reliving the same story is in its own way traumatising. It was deeply upsetting telling people who I knew who cared about me, that the melanoma had spread to my regional lymph nodes. You tell the same story, over and over, then worry about how they are taking the news. I was even calling or texting to check they were ok. There was a level of guilt I felt about telling people my news, and it was exhausting.
Also, some people would try to draw out of me my exact feelings or emotions, or even wanted me to cry with them. It felt like they wanted to grieve with me or have a moment of connection. I get this, it’s like their own way of processing.
3. You’re not a statistic
A gem piece of advice from my uncle was to remember that I’m not a statistic. Yes, there is data on five-year survival rates, reoccurrence rates and it’s so tempting to be consumed by these statistics. But that’s what they are, statistics. The age of the internet means information is readily at our fingertips. But honestly, getting bogged down in the data doesn’t consider you or your situation. We all have our own uniqueness and different factors that will impact our cancer journey. So yes, statistics are helpful, but they aren’t everything!
4. Find your people
There will be select people with you want to share everything, your thoughts, fears and what you’re struggling with. For me, it was people who I knew that wouldn’t try to offer me advice. I just wanted to have someone listen, not give me their thoughts on what I should do. My sister would say to me on the phone, “what do you need? Advice or just to listen?” and it was the perfect question.
5. Your PET scan is not a nice experience
Personally, the PET scan was by far the worst experience of all the early testing. I had little warning that I would be strapped in from head to toes and lying still for 20 minutes whilst slowing moving through the scanner. It was painfully slow and all I could think of during the scan was what if the melanoma has spread further, how am I going to manage two kids under two and cancer?
6. Mental health support
There are psychologists and other health professionals that specialise in the oncology field. My uncle, a retired esteemed medical professional was the one who informed me about psycho-oncologists. I wish I got onto it sooner. I am now trying to proactively address any underlying trauma resulting from this health journey. I tell pretty much everyone that I am talking to someone, as its one way to help normalise mental health support. The bonus of covid is that telehealth has made it easier to access mental health support, even those in regional and remote areas.
There’s a level of psychological safety speaking to someone who understands what you’re going through, because its similar to their own experience.
7. You are not alone
There are support groups, online forums, podcasts and even websites dedicated to most cancers. Like most people in the healthcare system, you want a program that suits what you need. You find like-minded people or those going through a similar journey and you bond. There’s a level of psychological safety speaking to someone who understands what you’re going through, because its similar to their own experience.
8. Getting through each day
As someone that tends to be thinking ahead, who will we catch up with next week? when should we go away? This wasn’t something I was capable of anymore. I found that for the most part I found myself just focused on getting through each day. I don’t think I had the capacity to really think more than that. In the early diagnosis days or even when treatment begins, you often only have the energy to think about that day. But for me, honestly it made everything manageable. Like a nice list with boxes to tick. Accepting that was completely fine helped me manage my stress and anxiety.
9. Take a breath
I started wearing my smartwatch again, it reminds me to have a mindful moment and focus on my breathing. With two girls under two it’s safe to say I don’t get much time to myself. Now, as I begin to work through my emotions, I am consciously trying to take a moment each day and do breathing exercises. I’m also back swimming (despite what it does to my curly hair) and find this by far a great breathing and mediative exercise. You have young kids too? Sure, not a problem. My psychologist recommended using our daughters snow globe, shaking it, watching the particles drop together and focus on our beathing.
10. Theme song
Yes, that right, a theme song to pick you up is a must! Each day before or after dinner my daughters and I embark on a dance off. My two-year-old dances (she has the best dance moves I’ve ever seen) whilst our baby claps and giggles.
Finding a song that sings to your soul, or even that has a simple message that resonates with you is helpful. Personally, Heather Small Proud has become my anthem. Most days during treatment I was proud just to get through each day unscathed. We had this song playing this song on repeat in our household and each time it would fill me with joy.
What’s next?
The future of survivorship awaits me. I have no doubt it will be filled with moments of anxiety as I discover a new mole or even changes to an existing one. All I know is that I am going to work hard with my psycho-oncologist to make sure I navigate this path is both a meaningful and gentle manner. Personally, I’m not looking to see how my story may help others. It feels like a waste not to help champion skin cancer prevention. But that’s me. I have always been driven by an altruistic motivation to help others. However, for many just focusing on healing is all you need to do, and that’s ok too. The main thing is just focus on being your fabulous self!
With a background as a nurse, and patient support manager, Pauline wants to help change the system and is passionate with advocating for better psychological and mental health support for those diagnosed with cancer. Pauline is a proud member of MSCAN’s Community Action (ComAct) Team.
Listen to Pauline and Carl’s Podcast
Melanoma & Family Ties: Pauline and Carl’s skin cancer journey
The Spot on Resource
This feature is part of MSCAN’s Wellbeing series which also includes content from MSCAN’s Spot on Resource. If you have been diagnosed with advanced melanoma, or know someone that has, you can order a FREE copy of MSCAN’s Spot on Resource.
More from the Wellbeing Series
Coping with a skin cancer diagnosis
Dr. Eleanor De Ath-Miller is a registered psychologist with a Doctoral degree in clinical neuropsychology. The podcast covers evidence-based health and wellbeing
Living well after a cancer diagnosis
Dr Maria Ftanou is the Director of Psychosocial Oncology at the Peter MacCallum Cancer Centre in Melbourne.
the role of the carer
Having a carer by your side will help provide emotional support through diagnosis, treatment and beyond.