By Rebecca Hurst (formerly Gallo)
Rebecca Hurst was diagnosed with Stage IV ovarian cancer at the age of 25. She endured multiple surgeries and rounds of chemotherapy but unfortunately passed away in November 2020.
Rebecca's determination to advocate and raise awareness by sharing her story was a true inspiration to everyone she met. We hope the words shared in her blog articles will serve as a powerful insight for those of you seeking information and perspective.
The OCRF is committed to honouring the Rebecca's memory, and the memory of every woman whose lives were taken too soon by this silent disease.
Trigger warning - this blog post refers to body image issues, depression and mental health themes which may be distressing for some readers. Please consider your own mental health triggers prior to reading and seek the company of a trusted friend or family member if needed.
My mum and I have an excellent relationship now, full of trust, open communication and respect. This wasn’t always the case—I’ll be the first to admit I was beyond your ‘difficult teenager’. Even though I'm 26 now, it feels not all that long ago I was going through puberty where every emotion was heightened, a slight change in plans could start 'World War 3', I broke the rules constantly and I knew exactly how to push my Mum’s buttons (you’ll be glad to hear I have since come out the other side and turned out to be a very well-adjusted adult).
What I didn’t realise at the time is all this was probably easier because while I was going through puberty, my Mum was going through menopause.
My knowledge of menopause started and finished with what I experienced at home and in my year 11 health class, where I came out with a basic understanding that it meant:
- You can’t have babies anymore because you had no more eggs
- It can make you moody
It felt like something very far away and for ‘older people’ so didn’t quite pique my interest as much as my period cycle and learning how not to get pregnant (we were being sent home with one of those ‘simulator’ babies at the time that would cry, poop and need to be fed and settled, when it was my turn my baby spent most of the time "out of sight, out of mind").
So when I found out that my ovarian cancer debulking surgery would involve the removal of most of my reproductive organs, including my ovaries, I had a lot to learn about menopause.
My team told me that post-surgery, I would immediately be in ‘surgically induced menopause’. This basically means that because both of my ovaries were being removed by surgery, my body will immediately go into into menopause, rather than occurring over the process of a few years.
As an allied health professional, and classic type-A personality, I am a self-confessed over-preparer and avid researcher. By the time my appointment with the menopause team was scheduled at the hospital, I was well aware that surgical menopause had the following side effects:
- I would wake up from surgery and immediately be in menopause. Being so young, this also meant a severe onset of menopausal symptoms such as hot flashes, night sweats and vaginal dryness
- I would be at a higher risk of osteoporosis and/or fractures due to loss of bone density (I had never even broken a bone in my body before)
- I would likely have (more) difficulties with sleeping
- Reduced sex drive; due to vaginal dryness and associated discomfort
- Reduced sex drive; this time due to loss of testosterone usually produced in the ovaries
- Increased risk of cardiovascular disease
- Loss of fertility
- Possible weight gain
- Increased risk of depression (although given everything else that was happening in my life, the team said it was near impossible to determine if this was due solely due to menopause—but it certainly wouldn’t make mood management easier); and
- There could possibly be changes to my cognition or ‘thinking processes’ (again, unlikely due solely to menopause given that 'chemo brain' was also in full swing)
In some instances there are women who are going through menopause, surgically-induced or naturally, that are able to have Hormone Replacement Therapy (HRT). This is where you would take medication to replace the hormones the ovaries are no longer producing to help manage the symptoms listed above.
Unfortunately for me, the team didn’t know enough about my cancer to know whether it was hormone-driven and if HRT would actually put me at risk of the cancer growing. More testing would need to be done with a larger sample and then a plan put in place. So while HRT wasn’t completely off the table for now, I would be spending at least the first week in hospital adjusting to life as a 25 year old thrown into menopause.
Of all the side effects that I learned about, the three that bothered me the most (aside from loss of fertility) were weight gain, hot flashes and the fact that being young and in surgically-induced menopause, all the symptoms were likely to be amplified. This unfortunately turned out to be extremely true.
I have always been a naturally cold person; at my most content: snuggled up in front of a fire with lots of layers of clothing and an extra hot chai latte in hand. This has caused many disagreements with the temperature of the car with my now-husband over the years (who is the total opposite and will be wearing footy shorts and thongs even in winter).
You can learn more about my debulking surgery here , but due to being in significant amounts of pain, the first few days after surgery are a bit of a blur. I learned that I wasn’t eligible for HRT because my cancer is oestrogen positive, so I was getting ready to tackle menopause head on. I remember thinking that I wasn’t experiencing any of the dreaded hot flashes that I had read up about and that maybe I was one of the ‘lucky’ ones and this was as bad as it was going to get. Well, it seemed our sneaky friend cancer had lulled me into a false sense of security...
It was on day 3, post-surgery, that I experienced my first intense hot flash episode. It felt like nothing short of my entire body being on fire. I was faint, the sheets were wet from sweat and I felt like I would never be a normal temperature ever again.
The nurses sprang into action and bought me a cup of ice, some face towels and a large fan for my room. After about 10 minutes the ordeal was over and I returned back to a normal temperature. But these would continue at least once a day over the next few months.
I used the following strategies to manage hot flashes:
· I changed the way I dressed: layers are your new best friend during menopause. Even though it was the middle of winter in Melbourne, I was dressed ready at all times to strip down to a singlet if I needed to
· Food seemed to be a trigger for me, so having a cool drink at home and asking for a glass of ice at every café/restaurant I went to became the norm
· Carrying around a little hand held pocket fan; and
· Having a clean set of sheets ready to go for any excessive overnight flashes
PHYSICAL AND MENTAL HEALTH
Reflecting back, I was right to spend time thinking about my physical health and the changes that menopause would bring. I was to have a bone scan since I was at higher risk of osteoporosis (this is repeated every few years). My diet would need to change to ensure I was getting enough nutrients to support bone and overall health. And, I was encouraged to continue keeping physically active with a focus on strength training.
But, I was approaching this from a place where I didn’t want to ‘get fat,’ triggering some body image issues I had carried around with me since I was a teenager. My relationship was also adjusting and overcoming so many different hurdles, one of them being intimacy in a body that didn’t quite feel like it was mine again just yet. This shook me, as it was something that, as a couple, we had never had to face before. The combination of these thoughts and feelings was becoming overwhelming.
In hindsight, I should have placed a higher importance on my mental health and wellbeing during this time period, preparing before the surgery. Being hard on my body image is a cycle I fall back into from time-to-time, and I have a tendency to be extremely hard on myself when I don’t reach my goals—not a great combination when you have been told to ‘take it extremely easy’ for 8-10 weeks. My moods were also becoming a bit out of control, where I would be extremely happy one minute and crying over something insignificant the next.
About 8 weeks post surgery I fell into a ‘depressive’ state. It was a dark and scary time that I believe was amplified not only due to the fact that I was dealing with a significant cancer diagnosis and recovering from major surgery, but also the chemical changes that were happening due to menopause. I feel extremely lucky that I had such a strong support network of professionals, family and friends to support me during this time—even if it was set up after I needed help.
My advice to anyone going through this would be to set up this network, even if you feel like you don’t need it before anything ‘goes wrong’, so that it is there to access immediately if/when you do need it.
SO… WHAT NOW?
I no longer have intense hot flashes that wake me up in the middle of the night, surrounded by wet sheets. I don’t remember the last time I was desperate for a glass of ice, afraid I might pass out if I don’t cool down. My moods have settled, but it is still something that I work on everyday. Some of the other side effects are here to stay like vaginal dryness and ongoing work on intimacy. I am on supplements to support my bone health and complement my diet. I have a lot of friends who are growing their families, which can feel isolating—I certainly don’t have any friends to talk about the effects of menopause with!
But I believe I have survived and come out the other side—ready to tackle the next challenge.
If this story has impacted you emotionally or triggered an adverse reaction, please consider reaching out for help from a close friend or family member, otherwise Lifeline and BeyondBlue can offer 24 hour support if you need to speak to someone.