Whangarei mother of three Marama Flay-Alker never considered making a bucket list when she was diagnosed with an aggressive form of stage three cancer – she knew she would beat it. Here, she shares her story with Jodi Bryant.
If it wasn't for the slower pace of lockdown a year ago, there's a chance Marama Flay-Alker wouldn't have seen this Mother's Day in with her three young children.
But, with a close friend's recent breast cancer journey fresh on her mind, followed by swift yet harrowing action backed by sheer determination, she is here today to tell her story.
After her friend's experience, the 42-year-old had become vigilant with self-exams.
"It was Monday in the last week of level 4 and I did a self-exam in the shower when I felt a small 'marble' at '5 o' clock' in my right breast. That night I lay in bed and gave it another feel. It was still there and, in this position, it felt more pronounced, more solid and more foreign. I could push down on it and it would pop up on one side or the other of my fingers," she describes. "I decided to leave it for a week and hoped it would just go away. I didn't tell anyone. I didn't want to alarm anyone for no reason."
One week on, the lump was still there. Finally telling her husband Malcolm, together they went to her doctor's where she was examined and advised to get a mammogram immediately. There were lengthy waits due to Covid but, with private health insurance, the process was sped up.
"I had to sit and wait in a small cubby stall, dressed in a gown and wait by myself (due to the lockdown level)," she recalls. "It was a very lonely experience. Both the technicians were eerily quiet while performing the mammogram and scan and when my right breast took 40 minutes to scan versus my left which took five, I knew there was something not quite right."
Malcolm accompanied her to the Thursday appointment with Dr Vanessa Blair the next day where, following an exam, she confirmed there was a high chance of breast cancer. She took a biopsy and said the results would be in on Tuesday or Wednesday. The ensuing weekend was the longest of Marama's life.
"I cried with worry about the 'what-ifs', I didn't sleep thinking about never seeing my kids grow up and all the things I would miss if I died. I stayed awake watching tv till I fell asleep from exhaustion to avoid thinking. I was terrified of dying and angry because I didn't deserve to have cancer."
Finally, on Wednesday, she was asked to visit the clinic that evening.
"If driving to a doctor's clinic in the dark down a metal road isn't a cliché to a bad omen, I don't know what is.
"Vanessa got straight into it and confirmed that I had a 1.8cm aggressive stage three triple negative breast cancer. In her opinion, it had only been there a few weeks but was growing aggressively which is how I could feel it after not noticing it earlier.
"After a weekend worrying about all the 'what-if's', I was actually relieved to have a diagnosis I could start fighting against. I didn't cry, in fact my reaction was to ask, 'Where do we go from here? What's the plan of attack?'"
It was decided on chemo first to shrink the tumour, then surgery (an MRI two weeks after the mammogram showed the tumour had already grown from 1.8cm to 2.4cm). She then went home, poured herself a large glass of wine and for the first time in six days, relaxed.
"I had the best sleep that night."
The next day she broke the news to her extended family who were living with her in a bubble of 12.
"We called a whanāu hui and I just ripped the band aid and told them I had breast cancer. My two littlies (then aged six and four) didn't quite understand and asked if they could go back upstairs and watch cartoons. The other adults and big kids were shocked. However, because I wasn't upset, they weren't upset. I honestly answered their questions and explained all the information I had and confidently told them that I was going to be ok, and I truly believed I would be ok. I kept them all in the loop throughout.
"I believe that knowledge is power," continues the primary school teacher. "If my kids were armed with the knowledge, then they had answers when asked, and had some control over the situation. I didn't want them left wondering or thinking the worst by what they might hear or see."
The next step was an appointment with Canopy Cancer Care oncologist Dr Lisa Dawson who recommended an aggressive clinical trial treatment called BrighTNess before starting AC treatment. This involved two different chemos every Friday for 12 weeks before dropping to a different two each fortnight.
Marama describes the first 12 weeks as "rough" as she had a mild reaction to the Paclitaxel which increased each week.
"My skin became so sensitive, I couldn't even tolerate the seams on my clothes touching my skin. It became so debilitating, I couldn't wear shoes and socks that would rub my feet and set off a reaction. It was pretty depressing not being able to do physical activity, but my sister suggested swimming and aqua fit, which was a lifesaver. The water helped for both my physical and mental well-being."
As soon as she stopped the Paclitaxel treatment, the allergic side-effect stopped.
"However, then I began the AC treatment and it made me so very sick. This treatment was how I imagined having chemo was like based on all the characters with cancer from tv. I lived on a constant regime of anti-nausea tablets and then other meds to counteract the side-effects of the anti-nausea. I had gone from a Panadol every now and then to be literally bursting full of poisons.
"My long hair stayed put for two treatments before it started coming out in clumps. So, we sat in the kitchen and each member of my family took turns to shave my head. It was really cool to have them be a part of it. It was liberating and devastating at the same time, but I ended up loving being bald. The rain on my bald head was such a joy."
Marama says the fatigue was "unreal"; After chemo on a Friday, she would sleep most of the weekend. "It was like the absolute worst hangover without the good time getting there. It was miserable."
The tumultuous journey also entailed the bittersweet postponement of chemo twice due to low white blood and neutrophil cell counts, along with several blood transfusions to increase depleted iron levels.
"I always cried when it was postponed. I was so impatient to get to the end that I was always disappointed when I couldn't have a treatment. The upside was that extra days between treatment made the world of difference to how I felt."
The daily cocktail of meds and steroids and having no appetite for anything but toast saw her gain 14kg in nine months. "It felt so unfair to be so sick on the inside and gain so much weight on the outside."
During surgery to have a port-a-cath inserted in her chest, Marama discovered that she was severely anaphylactic to patent blue dye, ending up in ICU in Auckland Hospital and having it inserted with a local anaesthetic. Marama describes this as an "absolute surreal experience to be awake in an operating theatre with a sheet over my head."
"Even though the treatment was tough, and I was utterly miserable, I was so motivated to keep going. After two treatments alone, I couldn't feel the lump anymore. Vanessa could still make it out, but it's reducing reaction to the treatment gave me amazing hope and strength to keep going."
Genetic testing showed that Marama had a faulty BRCA 2 gene passed from a parent which meant she had a 70 per cent chance of getting breast cancer at an early age. This made her eligible for a bilateral mastectomy to include preventative removal of the left breast as well as the affected one. She had 12-hour surgery to remove the port-a-cath in her chest, the breast tissue from both breasts and have breast reconstruction using her own body fat removed from the stomach.
"It was a 12-week recovery. But I have a fab pair of new boobs with no breast tissue to get cancer!"
This positive attitude and her determination paid off when, at home recovering from the surgery, she received a phone call from Vanessa informing her she had a "Pathological Complete Response" to treatment and no signs of cancer cells were detected in the breast tissue and lymph nodes.
"I was cancer free! I had a wee cry of relief and then called my mum and closest friends to share the good news."
Marama credits her 100 per cent positive mind-set for getting her through, along with private health insurance, aqua fit classes, the staff at Canopy Cancer Care, her spa pool to ease the aches and pains and the love and support of her friends and family, including "my kids and the job I still had to do as their mum, and my rock of a husband."
"I was determined to beat cancer. I truly had a mind-set I would be ok. The experts were all confident and therefore I was too. My friend survived and so would I, plus I had too much to live for.
"Vanessa was amazing throughout. She, right from the outset, said this is a curable disease and she was confident we could treat it with a positive outcome. Her confidence in the treatment plan made me confident that I would survive."
During her chemo treatment, so many friends came to keep her company that it had to be held in the big room. She also had dinners, baking and care packages delivered, help with the kids and absent friends topping up her pools card and sending vouchers for family outings. In addition, her crossfit gym (Central Fitness and Wellbeing) ran a fundraiser workout for Marama and another member with cancer, enabling her son to attend a school trip to Sir Edmund Hillary Outdoor Pursuits on Great Barrier.
Alongside her journey, Marama kept a Facebook messenger chat for friends and family who wanted to be included.
"I overshared everything on that chat. The good, the bad and the ugly. I found that sharing everything made my load lighter, as well as giving my friends information about cancer they didn't know or assumed about cancer. That chat was a source of stress relief."
Thinking back to the day the diagnosis changed her life, Marama says:
"It was lockdown so we were at home and appreciating the blessing of lockdown for us as a family. Slowing down and enjoying time together. If it wasn't for lockdown, I may not have slowed down enough to do a self-exam that day and left it for another week. Who knows?
"The 'life is short' saying was never truer than when you are faced with a potentially short one. Hug your loved ones as often as you can."
And she has further messages for women:
"Early detection is key! Early detection saves lives. If you are familiar with what your normal is, then the abnormal will absolutely stand out. You will know when that's not right.
"No amount of feeling whakama (shame) about having scans and smears is worth the dread of being told you have cancer. Also, get your body healthy and fit. Not to fit into a bikini in summer or to be a size whatever, but do it so if, you ever need it to, your body will be strong for you when you need it most; to support and get you through."
As a carrier, there is a 50 per cent chance Marama will pass the gene onto her children giving them increased risk of breast, ovarian and pancreatic cancer. They will have the blood test for the faulty gene when they are 18 and have risk reducing options made available to them. The faulty BRCA 2 gene also takes her stats of getting ovarian cancer from 1/100 to 1/5 so she is currently in the process of having them removed.
Meanwhile, Marama, who returned to work at Morningside School three days a week in term one, is feeling privileged to be here this Mother's Day - although it's looking like breakfast in bed is off the cards.
"I will be spending Mother's Day at rugby as it will be (13-year-old) Kauri's first rugby game of the season… but I'm not complaining."