I have skin problems. Won't bore you with the details but my body treats skin conditions like pokemon, if there's a wierd skin problem to be had sign me up - no please don't. Putting your best face forward can be hard when that face, and every other piece of skin is constantly doing something painful or flaky or itchy or gross or unsightly.
I was 30 when I found out I had melanoma. I knew before I knew. Because of course it was my skin.
My mum knew. She clocked a mole I barely thought about and told me to get it checked. Her father had had melanoma and died young the better part of 2 decades beforehand.
My Doctor told me that the mole looked fine and that I was too young. I knew. I pushed and chose a full removal rather than a punch biopsy which seemed pretty much as invasive but with added sound effects. Cha-clunk.
I missed a phone call. My Doctor had left a message. I knew - Doctors don't make personal calls they get a nurse or a receptionist to do it. He made me come in for an appointment, I decided to pick Sam up on the way for support and the kids sat and played with the gross Doctor room toybox while I was told that it had been a melanoma. Sam didn't know what melanoma was, didn't think through the scenarios, didn't equate it with CANCER, but I did. The spectre of early cancers looms ominously over my family.
You're too young. 30 felt simultaneously too young and so very very old. I attended appointments alone, we had two very young children and hours in waiting rooms wasn't the place for them. Sam stayed with the kids while I sat in rooms full of people several generations older than me with their significant others and grown up children old enough to be my mother. I felt so grown up and completely alone with my mortality.
My cancer was removed, my margins were clear and I was set adrift from the public health system with an enormous scar on my collarbone - "we don't check skin" they told me. The hospital care I received was competent and professional but they were surgeons and specialists trained and mandated to attack with knives not provide holistic care.
The bills started to mount. Initial GP bills and minor surgery performed by my GP came to several hundred dollars. A mole mapping service to ease my mind that there was nothing else cost much more than that and much more again when another suspicious mole needed to be removed and my anxiety led me to opt for the in-house private removal rather than wait on the hospital again. It was a hard year financially.
I dutifully returned for regular mole imaging appointments each one costing multiple hundreds of dollars. I moved regions and was told that my images were the intellectual property of the software owners and I couldn't have them to show to my new GP or skin specialist. I had to start again.
My new Dr doesn't do imaging she glances at things I point out to her with a dermiscope, “helpfully” tells me that I have a lot of moles, and collects an extortionate fee for the pleasure. Today was the cheaper $80 for a 15 minute appointment offered to repeat customers option, I'm made aware that I am causing the appointment to run overtime because of my many moles. She tells me that moles that give me the same willies my initial troublemaker did are fine. I honestly have no idea how much I have spent on this at this point, I don't want to think about it.
Over New Years I faced a sandfly onslaught that left me scratching all over, I paid little attention to another itchy spot that had appeared on the back of my hand. Except it hasn't gone away. It's progressively gotten larger, and recently if I knock it it hurts in some deep place with a savagery that scares me. My skin Dr agreed it was safest to remove it. I made the appointment and had to push for a quote. It was $566. I calmly but promptly picked my jaw up, paid my $80 for the 15 minute appointment, cancelled the removal, left, and cried.
I cried because I can't afford that, who on Earth can? I can't get insurance because of this condition precludes me, if I'd had it before that initial suspicious mole appointment maybe...but who knows. And besides I was too young.
I cried because I'm so sick of the ongoing nature of this. Am I going to be a financial drain on my family forever? Am I going to have to worry that I won't catch a mole in time and it will show up in my brain or my liver one day forever?
I cried because it's not fair. It's certainly not fair to me in an abstract woe is me way. I've actually always worn sunscreen and taken care of my skin, it wasn't always easy being a teenager in the aughts and eschewing a tan.
But more than that it just feels so unjust. We have a healthcare system that is compassionate and brilliant in some ways and mean-spirited in others. New Zealand has the worst incidence rates of melanoma in the world. Over 4,000 people are diagnosed every year and 350 people die from the disease. It's our third most prominent cancer. 70% of cases are over 50 but that means that 1200 every year are "too young". Melanoma is a cancer with great survival rates when caught early and absolutely abysmal ones when it spreads. This website puts figures at 98.4% if it's confined to the top layers of the skin and 22.5% if it metastasises. These are American figures but likely broadly similar here and honestly the fact that there is so little information online from NZ is a problem in itself - this is not something that seems to be taken seriously. Trust me, I've gone down every Google rabbithole.
I don't want to get all taxpayer up in here but WHY THE FUCK ARE WE PAYING FOR A GOLD PLATED AMBULANCE AT THE BOTTOM OF THE CLIFF INSTEAD OF SCREENING, EARLY INTERVENTION AND PREVENTION??!! I feel like this just doesn't make sense. The worst part is that all too often it's too late and we're paying for the gold plated ambulance only to have it do a few laps around the block and drop people off at the funeral home. **edit: it's been pointed out to me by a medical professional friend that gold-plated is an ill-fitting metaphor, perhaps iron pyrite plated is better. There is certainly a perception that cancer care should be better than the stretched reality is**
Being proactive about melanoma is cruelly and prohibitively expensive. The skin cancer imaging industry in New Zealand is an absolute rort and the sunscreen industry has blood on their hands. I can't articulate any thoughts about this without being paralysed by anger.
I'm booked in to see my GP in a couple of days time and hopeful for a referral that will start the slow process of public removal. I'll probably end up paying for a punch biopsy - did I mention how much I hate punch biopsies? - and maybe a minor surgery with my GP.
For now I'll spend some time in the company of my old friends Clawing Anxiety and Nagging Guilt, we know each other well and we'll get through this together.
That article...we've skimped on sunscreen for budget reasons; covered up instead. It's the first time I've seen someone come out and say how expensive this stuff is. I started making my own in great tubs so I wouldn't have anxiety about the cost of it & would actually use it in the quantity prescribed.
One kid breaks out in welts from her Natio sunscreen among other things. Once we didn't have any so stopped by the chemist for hypoallergenic sunscreen that she wouldn't react to. $26 for a tiny tube...about 5 years ago. Who's for fish and ch...oops, I mean sunscreen.
Anyone with a history of skin cancer or allergies to the standard sunscreen should start asking for a disability allowance over summer.
What do poor people supposed to do? Die while saying "At least we have a public health system"?