I had no obvious symptoms before I was diagnosed. My diagnosis came about when I was 35 weeks pregnant and all of a sudden, I had severe shoulder tip pain in my right shoulder one night, which I initially put down to referred abdominal pain from the baby. The pain was so severe that I admitted myself to the labour ward in the middle of the night, despite the midwives trying to dismiss my pain as simply being muscle soreness.
Fortunately, my obstetrician was not so dismissive and ordered a CT scan because he thought that there was something wrong with my lungs. That initial CT scan showed up shadows on my lungs and shadows on my liver. So I was referred for a liver ultrasound which reported many dark shadows throughout my liver.
A specialist maternity physician was called in and checked me over and was insistent that there was nothing wrong with me because I looked so healthy, had gained weight in the pregnancy, had no obvious symptoms apart from minor constipation and the baby appeared to be a healthy size too.
We left it that I would deliver the baby in a few weeks’ time, when he was full term and then do some further investigation into the dark shadows across my liver and lungs! My obstetrician, my husband and I had a sixth sense that all was not actually ok, and we decided together that the baby should be delivered early at 37 weeks and we would in fact start the further investigations then.
So, I delivered a perfectly healthy baby boy by caesarean section and had two perfect days with him before our family life changed forever. My obstetrician was fantastic and behind the scenes assembled a team of people to take over my care once the baby had been born. On the day of Lenny’s birth, he said to me “we are all a bit worried about what is going on with you, but let’s not forget that today you are having a baby – so let’s focus on that celebration today”.
Two days after Leonard was born I was sent for a liver biopsy, which confirmed that the dark shadows were cancer and the primary source was bowel cancer.
I was quickly scheduled in for a colonoscopy, which showed I had a large tumour in my sigmoid colon on the verge of causing a complete obstruction. So, recovering from my c-section and having a tube running out my bottom to allow some waste to escape my bowel, I was sent down for a Pet-CT scan, which lit up the massive bowel tumour, loads of tumours on my liver and a couple of lesions on my lungs.
Meanwhile, baby Lenny was having a lovely time in the neonatal ward being looked after by the fabulous nurses there who cuddled him, fed him and gave him his first bath because I couldn’t do it. I will be forever grateful to ALL the hospital staff for looking after my family in the worst weeks of our lives.
After my diagnosis, I was swept along by the multidisciplinary team of gastroenterologist, colorectal surgeon, oncologist, liver surgeon and others. It is all a bit of a blur, but I remember my oncologist introducing himself to me and telling me we would get to know each other quite well over the coming 10 years!
The main issue was my liver – it was on the verge of shut down. So, my team decided that I would have an ileostomy created to give my bowel a break and I would commence Folfox chemotherapy straight away in a bid to shrink my liver tumours to make liver surgery possible down the track.
I was lucky that one portion of my liver was relatively clear of tumours to enable a resection. I would have a bowel resection after a few months of chemotherapy and eventually a liver resection and ileostomy reversal. And so that is what happened, as soon as my ileostomy started working properly and I had a grip on what that entailed, I started chemo. Two weeks after rocking up to hospital to have my baby, I was going home as a mother of three children under three and a cancer patient.
Family members flew in from around the world to help while I was in hospital and during my treatment. Friends and family rallied to help us, as I completed three months of Folfox chemotherapy with Avastin (the Oxaliplatin over winter was awful, even in mild Perth) and took a short break to have my bowel resection to remove the primary tumour.
I then had another four months of chemotherapy and took a break to have my liver resection and ileostomy reversal, which was successful. At the time of the liver resection, the chemo had melted away most of what was left of the liver tumours and the lung tumours had shrunk to almost non-existence.
After my liver resection, I took a break from treatment to see what would happen – would the tumours grow back, how many metastases would pop up?
I was lucky, only a few new lesions popped up in my lungs and my regrown liver remained clear.
I then had several RFA ablations on the lung lesions on a few separate occasions, which worked well.
Unfortunately, a naughty lesion appeared in my lymph nodes in my lungs near my oesophagus, which could not be treated with RFA. Luckily, the Western Australian Government has a cyber knife treatment facility and I underwent cyber knife treatment on the misbehaving lymph node, which was also successful. I also went on a course of Capecitabine oral chemotherapy, which was so manageable compared to the intravenous therapy.
I then had a little break from treatment and we cherry picked off lesions as they grew in my lungs with RFA until one scan revealed that a few more had appeared – it was time to get back on hard core chemo, which was so disappointing.
So in October 2016, I went back on Folfox with Avastin for six months. After six months I went back to taking Capecitabine tablets with an infusion of Avastin every three weeks.
I remain on this regime today and although I would prefer not to have cancer and be taking medication – the alternative is so much worse. I treat my condition as I would any chronic medical condition…I take medication and get on with it.
There have been so many lows over the past three and a half years, but there have also been so many silver linings out of being diagnosed with advanced cancer.
I have realised that I am tougher than I thought possible, my husband is even more amazing than I could ever have imagined, and my children are more resilient than I could have wished for.
The love of my immediate family and those special extended family members and friends who have supported us over the last few years is what keeps me motivated.
Good people will want to help you and although I still find it hard to accept help because I am so independent, I will forever be grateful to those families who have dropped meals at our door, taken my children on play dates and done so many generous and thoughtful things for us.
Great people have done all or some of these things and simply just been there for me…if I needed them, without making a big deal. My family has so many great people in their lives.
I have also come to realise that some people simply cannot cope with a close friend or family member being diagnosed with advanced cancer. There are people that I thought would rally behind us, but it has been too hard for them to deal with the potential devastation a diagnosis like mine can cause or too hard to shift the focus away from their lives to someone else who might be going through a tough time. Whilst disappointing, it has really just been a life lesson to learn!
We try and keep up a normal family life – we continue to go on holidays, socialise with friends, go to the park and beach and generally do things other families do. We have a lot of fun.
As a woman, I still get hung up on looking my best. Cancer does not change that – it just makes it a little bit harder to feel body confident! I have struggled with my changing body, which has been rattled by steroids and criss-crossed with surgery scars. This remains an ongoing struggle for me.
As a mother of young children, it is hard to get time to yourself, but you need to take time out for yourself to exercise – it is the one thing that has been a non-negotiable for me. Gentle exercise when you are not feeling great and more challenging exercise when you feel better – it has been essential for my overall health and immunity and so important for my mental health.
We put our children in day care and early learning centres to give me a break and also employed a fantastic babysitter. Our family also helped out with child care.
My team of specialists are amazing and I trust my oncologist implicitly. I encourage everyone to find a specialist that they feel comfortable with – you need to be able to discuss confronting subjects with this person. So if possible, try and choose a team you feel comfortable with as it is hard enough dealing with cancer.
My story is not amazing and unfortunately not particularly rare, yet it is my own.
It is not the same as someone’s uncle Max… who died or someone else’s mate who survived cancer because they turned vegan and took up meditation.
I try very hard to keep to my own path and block out the bad news stories that you inevitably hear or read about. I also try to stay off google and definitely don’t rely on outdated statistics.
I have many friends who have been through or are going through similar (yet different) battles and their strength continues to inspire me.