What It's Like Losing Your Mother to Cancer at 30 Years Old

So there I was, reading a self-help book in my partner's upstairs bedroom, when I received a call from my mum. Straight away, I knew something wasn’t right, call it a sixth sense - a universal g’day, if you will.

I asked her "what's up?" she said, “I’ve got some sad news.... I have cancer. And it’s quite bad.” She apologized, I asked her not to, and apologized back.

I think those two three-word sentences are potentially the worst ones that you can hear on a phone call, not only because we’ve all seen people pass away too early from cancer, but because you are so taken aback by it.

“I can’t believe it” - I said, my head spinning, coming up with all sorts of hopeful thoughts. My mum was healthy - so there’s no way she won’t overcome this, right? This can’t really be happening, not after all we’ve been through!

If I could look back and speak to myself then, I would say “yes, I'm sorry mate, but this is really happening - and life is not going to look the same ever again”

We are curious beings, humans, and hope ultimately prevails. I think that's cause sometimes it's the best thing you've got. I reckon we should strive to never lose it. If I went into this again knowing the outcome, I would still cultivate just as much hope as last time. We had lots of hope; it really kept us going.

After news like this and overcoming the initial shock, you begin to get back into a normal routine again. Amongst all of the doctors' appointments and alternative therapies - you regain your momentum, and things, at least in my case, become quite stable again.

That is, until you get another phone call (I hope you don't!). My second awful phone call was not quite a year later - but first, let me fill you in on the nine-month journey in between them.

A Journey Between Phone Calls

We kept saying “If anyone can heal from stage 3-4 cancer, it’ll be her” - to keep us from worrying, she never really filled the family in on stages, doctors time-frames and the likes, so “grade three to four” was what we went with.

My mum’s tough, she did some radiotherapy, a round of the hard stuff - chemo, and started a great deal of alternative therapies.

The process wasn’t easy for her, but she made it seem that way, with her “just one step at a time” mentality. She went through all the physical changes from the harsh chemicals, lost her hair, went through the emotional turmoil from the news, and the spiritual changes too - hard experiences open a gateway to other realms, I think.

She bought, and was given many machines, a hyperbaric chamber, ozone machine, oxygen machine, rife machine, bioptron, and an anti-EMF thingy to name a few.

She did the nutrition, she was already on a plant-based diet, but through the recommendations of her various specialists and DNA coding reports, decided to pick up some other food groups - including eggs and fish. And don’t even get me started on the supplements, there were so many supplements and medications she decided to take daily, it must have been overwhelming for her to look at them all, in fact - I’ve still got to go through and sort them out.

She even tried some experimental therapies like mebendazole and ivermectin. Needless to say, it was a “let’s just do it all” approach - her decision was to use predominantly alternative therapies rather than high doses of chemotherapy and radiation. Because, as a Master of Nursing, and many years working as the director of nursing for Nurse Maude, she knew that the chemical journey can sometimes hospitalize you for most of the rest of your life, and how the body can sometimes never recover.

It seemed like there was no doubt in her mind that she wouldn’t survive this (at least that’s what she portrayed to everyone, her husband and I included) so it made sense to use small amounts of these life-altering chemicals to reduce the cancer, then heal from that using the alternate therapies afterwards.

The Cancer Went into Remission

That's right, my mum had shrunk the original metastasis in her endometrium, liver, and healed the tumors from her lungs almost completely using the above therapies. They worked, the miricale we were all hoping for was coming true. We knew that she wasn't quite out of the woods yet - but this was fantastic news.

The first phone call was around April, as you know time flies. Lots of life filled in the next nine months, and I wanted to spend as much time with mum as possible - without overwhelming her, or getting in the way of course! There were countless coffee shops, we managed a business together, so we were arranging that, managing tenants, talking about my grand ideas for writing and business, her next steps, goals, treatments, appointments, and even a cruise! you get the picture - it was all life stuff, and things were looking good, that is until Christmas.

Why They Say Not to Take Time for Granted

Eight months after her initial phone call, we were at Christmas - staying at a friend's place in Christchurch. We had seven cocker spaniels with us, mum had a new car, and we were going around exploring our old hometown while enjoying the holiday season.

But something was happening, mum was forgetting simple phrases and words, and after being so sharp for her whole life, forgetting a word like “toaster” was driving her nuts!

She thought it could have been the ozone therapy, or some of her higher dose medications causing the delay in memory - we were worried about it, but each day it seemed to be improving, so the matter wasn’t pressed, or so I thought.

A couple of days after New Year's Eve, I got the second phone call from her husband. “Your mum is having seizures, and she is being airlifted to Dunedin hospital” I went straight down and sat outside, waiting until I saw the helicopter arrive on the roof.

In that Hospital is when I learned that mum had been to ED in Christchurch over the Christmas break, and they had discovered a big tumor and other metastasis in her brain. She decided not to tell anyone, because she didn’t want to cause any drama, which I think is bloody fair enough. Remember, it's hard for the family, but just imagine how hard that would be for the person experiencing this - she deserved so much better.

The Ability to Get Back Up Again

Did I say my mum's tough? Well let me say it again, here we were, wondering if she would ever come right again after this. And guess what - once more, she did.

Mum fought from not being able to speak or put a sentence together (where the doctors said she could remain permanently after the severity of the seizures) to nearly back to her full self within a few short weeks.

I wrote her a few key words down in a notepad - where she could see some of the things she loved, family members names, animals, you get the gist, and each day, with the right

medication - her thoughts became linear and sharper once again.

We went back up to Christchurch for treatment, the system up there was better prepared than the overcrowded and understaffed Dunedin hospital.

After working through the scans and options, she came to a conclusion. The best way to prolong her life was to do whole brain radiotherapy.

This was a scary decision for mum, as they said she might not be as sharp as she once was afterwards, we were all scared - but none of us admitted that, because she would get better, and if anyone was going to beat this, it would be her.

I asked the universe for many things, for signs, to spare my mum, to let me stumble upon the solution, for strength, for healing. I asked any and all deities for help, I prayed, I reached out to alternative healers - but most of all, I didn’t give up hope, and neither did my mum. That’s how strong she was.

The Blessing of a Grace Period

We were blessed with the next couple of months. Mum became her usual sharp self, she was running errands, doing all her treatments, speaking with various specialists, researching, reading, doing all that she could to knock this cancer once and for all and again, life became a little bit normal.

We were back at cafe’s and sorting the business, but this time something was different. This time, we were organizing things, preparing for the “just in case.” And I think that was sometimes harder than anything. Planning the “just in case” for a loved one who we thought had at least another twenty years of living to do.

She gave me advice where she could, and I asked her everything I wanted to know, but we were busy, it’s almost as if we knew time was limited - and some things, some things just don’t fucking matter when you are looking at the narrow hallway of the doctors' expectations.

We all thought mum would outlast what they said, she seemed amazed when I told her the doctors' news from New Years “this may very well take her life suddenly at any stage” when she was airlifted to ED - the hope was so strong we either didn't listen, or just didn't want to, and I wouldn’t have it any other way.

Cause what would be the point in giving up, my mum never gave up - and not giving up is the reason we had this much appreciated extra time together.

My mum’s journey from diagnosis up until now was brilliantly devastating, wonderfully harsh, and beautifully awful. The ups and downs were more than I had ever experienced before. The amount of hope, grit, strength and resilience I saw from my mum changed the way I see everything. I learned that you can hold onto your values with integrity no matter how hard your battle is, that you can withstand and fight against what the odds are, what the doctors tell you - and go and do what you want to, regardless of anyone's advice. I learned that you can stand up and fight when most people would be entirely crushed.

And during this time, I learned a lot about the medical industry too.

The Medical system

Now I’m not one to complain, it’s not my style - but it’s obvious to me that we still know very little about the human body, and it shows in the medical industry, bigtime. It’s not the professional's fault either, the brilliant doctors, nurses, oncologists and medical teams are full of amazing, empathic, purpose driven human beings, but they only have one modality, and that is to treat the symptoms when they arise.

If you’re lucky and you live in New Zealand, you have access to some pretty state-of-the-art stuff, but some of it has been the same way since the 70’s, and that remains the same with my mum’s treatments.

We were in some ways lucky though; mum could afford to send her bloods away to Switzerland to see what kind of chemotherapy would be the most effective against her type of cancer - and the type the hospital had was 70% effective - not bad, but there was another drug - one that showed up with a rating of 85% or more - but that couldn’t just be supplied (or ordered) to our hospitals, so mum would have to go overseas to access it, because you can’t just go and bring your own chemo drug to a public hospital, so you wind up spending thousands on your own testing just to have the system say “no.”

The next thing we found challenging, was getting appointments and tests done, mum had had just experienced seizures and it felt like we couldn’t ask for scans or get appointments with any specialists in a timely manner. Her initial oncology appointment was 13 days after the incident - no matter how hard I pressed, how many phone calls we made, we couldn’t seem to hurry things along, and I know that this wait is much less than some others, and that’s only because (luckily) she booked it when she was in ED at Christmas!

I remember asking the specialist after the whole brain radiotherapy when they could do the next CT scan, and they said, “unless symptoms are present, we won’t” - I got frustrated and asked, “how can you tell if the treatments are working when you aren’t measuring the results” and the reply was something like “the results are in the symptoms, not the scans” - I failed to understand this, but now I do kind of get it, and imagine if everybody could request scans at their leisure, there would be infinite waiting lists!

Again, mum was fortunate enough to have health insurance, this helped out for a few things, it paid for appointments and small treatments that were not covered, accommodation, and a few bits and pieces she may have decided not to do should she not have had it.

I thought that having health insurance was a ticket to better treatment options through a private hospital, but it was so hard to get an appointment - and the oncologists said there wasn’t much they could do different to the public hospital and our current treatment plan, and that the wait could even be longer, so we just stuck to the public course.

A Couple of Tips

Anyway, I could write another whole story about the experience navigating our systems, but I’ll save that for another day - all I can say for now is this: Be polite to the staff at the other end of the phone, sometimes this may not be easy, but it will help you out in the long run, you’ll be surprised how much being nice will win you.

And get yourself an advocate, advocates know the system well, and when you run into issues with systems, or even knowing what direction to go in, having someone on your team can seriously help. Our advocate was brilliant, they saved us hours on the phone, hours that I then got to spend with mum cooking meals, getting her to appointments, and of course, visiting cafe’s.

The Next Phase

All of this is easier to talk about than what happened next, of course. Mum unfortunately took a turn about two months after the whole brain treatment. She progressed from being (nearly) fully able and her usual sharp self to being bed-ridden and in pain very rapidly, prompting the hard decision to go to hospice - all within a few days.

I knew deep down, on that mild autumn Dunedin day, that this was most likely the last time I would be driving my mum somewhere. From her teaching me how to drive when I was 16 in her Toyota Camry, to driving her to hospice at 30 - it felt almost poetic, and it would have been, if it didn’t hurt quite so much.

I wished for, longed for something different - still do, but realistically when it comes to Hospice time, you know you might not be turning back around. The team at Otago Community Hospice were truly wonderful. Mum had passionate doctors, nurses, volunteers, and the likes, making her journey just that little bit lighter.

What's Next?

Well, I feel that in this post I have covered off some of the harder parts of my mum's journey - and now talking about myself feels a bit weird. She has such a vibrant story of life - it's where I get some of my best qualities, she has left a legacy of integrity and somehow, I want to carry that on.

Her story is like many others yet so very individual. She grew up in Auckland with her sister and brothers, went on to win the Florence Nightengale award for her nursing, she sold her clarinet and went to Africa in her late 20's, was a midwife at Burwood Hospital for many years, and she got a master's degree in her 50's while running an at home business, working full time, running a kennels, and raising me.

She truly did a whole full life in her 63 years on this planet, I say she's such an over achiever that she didn't need the extra 20 or so - but it would have been nice to sit at Cafe's together just a few more times.

To be honest, I don't know what's next - I feel as though the rug has been well and truly pulled out from beneath me, and now direction is hard to find. Perhaps that's the best way to describe what it's like losing your mum to cancer at 30 - it's like your values solidify, yet you no longer know what direction to go in - and living with purpose and intention becomes more important.

Your bandwidth for bullshit shrinks, you value deep and real conversations, you search into the vast depth of your consciousness only to find that you are right where you thought you would be anyway.

You start to see light in the small things, the little signs that remind you of your loved ones, a colour, a familiar place, a deep breath - anything can remind you of them, and I like to see these moments as little visits, like they are here watching and guiding us through the next steps, gently nudging us along the way.

So mum, if you're out there, just know we really miss you - and I hope that you're having lots of fun and ease wherever you are. I'll keep looking for the signs, and most of all, I'll never give up hope.

Your son,

John.