Personal cancer story
Life seemed perfect at the beginning of 2012 – I was engaged to the love of my life, had two sons and a beautiful daughter and was looking to start at dual midwifery/nursing degree at university the following year. I was a busy mum of three, planning my wedding and also looking to get fit and healthy for our big day.
In June, I noticed a strange sensation in my upper right arm. The feeling was odd – kind of numb, but also burning. I looked online, hoping to avoid seeing a doctor, and concluded that the pain was probably a result of a nerve being pinched in my back. A week later, the pain was still there so I went to the see a doctor who prescribed a cream to help ease it. But the moment the cream was applied, I felt as though my skin was burning so I immediately washed it off.
A few weeks later – late July – the pain was so unbearable that it was waking me up at night. One particular night, I was woken by the pain at 1am and had a sudden urge to feel my armpit. I felt a lump and from that moment, dread and fear filled my head.
With little sleep, I went to the doctor’s office first thing the next morning where I was given a referral for a blood test and scan. I had the blood test right away but being a Saturday, I waited until the following Monday to have the scan.
The scan found a 5 cm round solid mass in my armpit. The nerve pinching pain made sense as the mass was constricting the nerves and veins running into my arm. From there, it was a whirlwind of test and scans: a CT, two ultrasounds, mammogram and then finally a guided biopsy, all in less than two weeks.
The biopsy confirmed my worst fear – it was cancer that had metastasised to my lymph nodes.
The diagnosis caught everyone off guard: a rare and aggressive skin cancer known as Merkel cell carcinoma. The mass had almost doubled in size since the first ultrasound less than two weeks before; it was now 9 cm.
I was terrified when I went to get more information online and read things like: ‘will prove fatal in roughly one-third of patients’, ‘40 times less common than melanoma’ and ‘average patient age 74 years, with 75% over the age of 65 years’. What?! I was only 26 and the mum of three young children! I was busy planning my perfect wedding day! I felt numb. How could this be happening?
My health and wellbeing had always taken a back seat to that of my children and husband, but now I realise that mine is just as important because they need me."
I had surgery in mid-August to remove most of the mass and all surrounding lymph nodes. The mass had now grown to 10 cm in diameter and they couldn't remove all of it, as some of it was attached to the major artery in my arm. Doctors advised that treatment would hopefully remove what was left.
After six weeks of recovery following surgery, I started on 27 doses of radiation to my armpit, upper chest and neck area over five weeks, with one low dose chemotherapy each week to help the radiation take full effect. Since the operation, I can no longer have needles in my right arm, which proved to be quite a pain as I have always had trouble with the veins in my left arm collapsing. One day, it took eight attempts to find a vein to insert an IV for chemotherapy before they gave up and decided to try again the next day.
The wedding! The date was set four weeks into my radiation therapy. My first question was if I would have hair, as I had been growing it for the past three years for the big day. We decided to still go ahead with our plans regardless of the huge change in circumstances. Although my hair had started to thin and had become brittle, I still had enough for my chosen hairstyle. I also had second degree burns to the radiation area, but I was able to cover them with a dressing and a beautiful lace bolero jacket.
The day was absolutely perfect for us both and a great escape through a trying time. It was a special day, 20th October 2012 – the day before our five-year anniversary of being together.
The Monday after the wedding it was back to business: kicking cancer's butt!
I was so happy to finally see the end of the radiation therapy, but by then the second degree burns had become third degree. And while I was happy the radiation was over, my treatment wasn't complete. Three weeks after radiation finished, I began three rounds of intense chemotherapy which were three weeks apart and each round was administered over three days.
After the first round, my hair really started falling out in clumps, so I shaved it off. Despite my protests, my amazing husband went bald with me. We let the kids take turns in
shaving my head to help them become more comfortable with the change. It turned out to be a fun experience, but emotional for me.
While going through treatment, I tried to spend as much time as I could with the kids – who are now eight, four and two – and my husband. I think it's important to appreciate all the little things: cuddling up watching movies in bed, lying on the grass watching the clouds together, or watching the kids play. I did everything I could to still feel like myself and like a ‘mummy’.
After six months of back-to-back appointments, tests and treatments, it all finally came to an end in January 2013, when I was given the all clear. I will have regular check-ups for the next five years and I also need to be proactive with the lymphoedema I suffer from after my lymph nodes were removed.
I have made the decision to postpone my studies for another two years to focus on my health and my family. We are slowly starting to catch up financially after Dane dropped down to part time work for six months, but I am so glad things are starting to feel a little more normal now.
I look back now and realise my body was screaming out that something wasn't right. I was constantly tired, lacking energy and feeling low, but thought it had just been normal exhaustion from running around after three kids, exercise and general daily life. My health and wellbeing had always taken a back seat to that of my children and husband, but now I realise that mine is just as important because they need me.
I've learned that if you aren't feeling your usual self, notice any changes to your body or have a family history of cancer, don't rely on the internet for answers or shrug it off. Go see your doctor as soon as possible.
Your journey is not always the one you had planned out, but the bumps in the road affect the paths you choose take along the way.
Read more stories about people's personal experiences with cancer