From screening mammogram to cancer diagnosis in a global pandemic.
In 2015, I received a lovely letter from the NZ government, wishing me a happy 45th birthday, and would I please attend a free screening mammogram. So I dutifully took myself off to the offered appointment, and got my free boob squishing. And every year since, I’ve had the same invitation. Last year, I dodged my appointment, but once we got out of lockdown, I figured I had better go. I was able to schedule it for a school day, so it was efficiently achieved, and promptly forgotten about.
Until about a week later, when I got a call from a nurse, asking me to come back for a second look. They had spotted a “something” that warranted closer inspection, and it needed to be done soon. On the 14th of July, I left Inigo with a friend, and went off for my appointment. Thanks Phillipa!
One more go in the sandwich press, this time on a machine that did slightly higher resolution, and multiple angles. Then an ultrasound and a check of my lymph nodes.
At that stage I was told that my imaging results indicated about a 3/5, where 1 = “go home and don’t bother us till next year”, and 5 = “that’s no moon”. Mine was a 3 = “we are going to poke you a lot more before we tell you to go away, or invoke the death star”.
Next up on the 5th August was a biopsy, which was honestly the thing I was most afraid of. I’ve never been great at medical things, but my pregnancy with the twins forced me to develop a callus over a lot of those fears. But it also left me with some medical related trauma (mostly because of the dehumanising way I was treated, not completely because of of the procedures themselves). I opted to take the offered mild sedation, but I think I really needed a much higher dose.
I won’t go into the procedure here, because I don’t want to frighten people, but if you’ve got to have one, and you’re like me and need to know what to expect beforehand, I will be very happy to chat. The way it was described to me, and what actually happened, were two very, very different things. Like describing borg assimilation as strapping on a wristwatch.
And during a pandemic, you don’t get to have a support person with you.
I was expecting to get my results the following week, during which Auckland went back up to level 3. I was offered the option of getting my results by phone, which I preferred. My surgeon rang to let me know that my cells had been identified as “Atypical Ductal Hyperplasia” – the centre diagram in the image below. This is not cancer, but it can become cancer in some women.
Sometimes, when a biopsy indicates ADH, a surgical sample will reveal “Ductal Carcinoma In Situ”, the next image, second from right. With this in mind, I was scheduled to have surgery on the 25th of August to remove more of the affected tissue and have a better look.
Because my boobs are big, and the cancer is small (and invisible to the naked eye), the procedure was preceded by a another procedure to place wires into the breast to guide the surgeon to the right spot. This meant quite an early start, getting to the first appointment, having the wires placed, and then being driven to the hospital – because you can’t have both procedures done in one place, of course.
And during lockdown, no support person. Or childcare. So all three of us trooped off to Newmarket, and Mark and Inigo waited in the car while I had the wires placed. They then dropped me at the hospital, then thankfully, Inigo was able to go to school for the day. Thanks Andrea, for planting the idea, making it possible (schools are only open for kids whose parents are essential workers), and for loving my little guy. And thanks Julie, for turning back after picking up your own kids, and going back for Squid, who got slightly forgotten in all the drama of my surgery being delayed.
Surgery was uneventful, except for the fact that my weird skin allergy/reaction to the surgical dressings hadn’t been communicated at all, so I had to have my wound completely redressed while in recovery, and I still ended up with a nasty rash from that and the cannula. The pain wasn’t that bad afterwards, and I only really needed pain relief for the first 2 days after surgery. I’m still sore now, but the extra bonus mammogram I had yesterday wasn’t intolerable.
On Wednesday afternoon I went in for my results, and to have the dressing changed. At level 2, I could have taken a support person with me. I should have. I didn’t.
Friends, if you ever have to attend an appointment where a possible outcome is being told you have cancer, take a friend. Thanks Alia, for bringing Squid home from school – that meant I had a little time to process things before I had to tell him what was going on.
Ductal Carcinoma In Situ is like winning the jackpot when it comes to a cancer diagnosis. Once you’ve processed “my boob is trying to kill me, I always knew those fuckers were suspicious”, the next thing you want to think about is treatment, and survival. With most cancers, they don’t use the word “cure”. With most cancers, they talk about how many patients with the same diagnosis are still alive 5 years after diagnosis. But with DCIS, they use the word CURE.
It’s not invasive, so while there are some cells that have gone rogue, they haven’t broken out of their prison yet, and it hasn’t spread.
Yesterday I had a second appointment to chat with the surgeon in detail, and I took Mark. And Inigo too, because he slept in, so he got to sit in the waiting room with his mask reading a book while we went in. One more surgery to get the extra bits they missed last time, and if the margins are clear, the only follow up treatment will be my regular yearly mammogram with minimal extra scrutiny, and slightly higher risk of recurrence – 10-15%. And because this is a relatively slow growing cancer, even if it had been discovered last year, the treatment would have been exactly the same. How lucky am I!?
If they aren’t able to get clear margins, then we talk about radiation, full mastectomy, etc. But for now, the prognosis is extremely good, and while the medical stuff is hell on my anxiety, I have no reason for self pity or catastrophising. One great blessing from having lived through carrying and then losing the twins, then nearly dying myself, is that I have already lived through one of the worst things a human can experience. Losing a child feels like the end of the world. Like nothing will ever be ok again.
This just feels like the next checkbox on my 2020 bullshit bingo card.
*Postscript. If you are reading this in a country that doesn’t have a socialised medical system, you might be alarmed at the financial cost of all my treatment. So far, my out of pocket expenses for all this are NZD$23.19 for the Uber I took home after the biopsy when Mark forgot to pick me up, and $10 for the beer I had with lunch immediately after the diagnosis.
At the point of diagnosis I was offered the choice of being referred to the public hospital system for the remainder of my treatment, or going into the private system. Since I have private health insurance, I have opted to go private because the sandwiches are better, and hopefully a woman without private cover will get treated slightly sooner because I am not using those resources. The standard of care I would receive in both systems is identical, though my treatment will be slightly quicker in private over public (2-3 weeks for surgery instead of 4-6 weeks in public. My case is not urgent – if it were urgent, it would be treated sooner in public. With private insurance, the projected cost to me = $0 out of pocket. In the public system, the cost would be the same. Free.
Pay tax. Live in a country where the government values our health, education, and public institutions.
Woke up beside the bloke that chose to spend his life with me sixteen years ago today, and has chosen to stay with me every day since.
I ran an online D&D dungeon crawl game for a group who were mostly strangers to me a few weeks ago, but are fast becoming “my people”. Squid and Mark joined in today, and many orcs had ignominious ends.
One of my bridesmaids video called me in her bunny pyjamas and tiara, so I also grabbed one and spent the rest of the day wearing it.
We had cheese, tomato, and branston pickle sandwiches in the shade of our lovely lilly pilly tree in the front yard, and waved at all the neighbours who were out and about.
Cooked some bulk dinner while the boys rejuvenated the veggie garden, and they found some baby mice that we warmed up, fed a little, and returned in the hopes that mama would come and take care of them.
And the story of the day?
Squiddo went to Countdown for some garlic stuffed olives (it was an emergency, ok?), and the paper bag he was using as a shopping basket tore. He left the groceries and the torn bag in the aisle, and went to purchase a fresh bag. The countdown staff gave him the bag for free, and when he returned, someone had left a reusable bag beside his little pile of groceries.
Over the last week or so, the knitting universe has been in uproar over posts, comments and responses made on the social media of a knitting personality. Having had a small taste of infamy years ago, I have every sympathy. I understand that when the online world you inhabit seems to turn against you, it can feel overwhelming, and putting your mental health first is vital. Right now, he needs to do what he can to recuperate, and care for himself, and though my words today are going to be critical of his actions, I believe it is vital for us all as allies to examine what it means to be an ally, and sometimes that will mean recognising that sometimes good people do shitty things.
I think of myself as a good person. I’ve done shitty things. I said an offhand thing online during the marriage equality debate that I didn’t think through, and it haunts me to this day. The pain of knowing what I did, knowing that it hurt people I care deeply about is uncomfortable. But I don’t have the luxury of forgetting about it. That discomfort drives me – it reminds me that being an ally isn’t something I should turn on and off when it’s convenient for me.
I have quite a lot of privilege. In some aspects of my life I lack privilege, but I have enough that I recognise that the ability to step in and out of being an ally is also a privilege. If I see someone behaving badly, I get to choose how involved I get. The person who is directly affected by the bad behaviour doesn’t get that choice.
When someone behaves badly online, everyone who sees that post of comment has a chance to call it out. And that is WORK. It takes effort. And if it feels hard for you as a cis/het/white/able bodied (insert privileged group here) person, just imagine how it would feel to have to defend yourself. Over, and over, and over again.
Imagine having to defend your existence over, and over, and over. Imagine being attacked online, and having all your friends sit by and say nothing. Imagine feeling like nobody cares.
Depending on your age, your culture, your family background, you are going to have different ideas about what sort of behaviour is acceptable. My paternal grandmother, raised with a lot of privilege, and in an era where racism was the norm, used to love Chinese food. She’d take the whole family out for dinner to an upscale restaurant, and call every waiter “Charlie”, with absolutely no awareness that it was rude. As a young child, I wondered whether it was a formal title that was bestowed on only the best waiters, or maybe there was some secret society.
I learned over time, through having progressive parents, that this was racism. I learned to see it. And I saw a lot of it. The war in Lebanon was raging across the other side of the world, and though I knew nothing of the war, I started to see new faces in our suburb. The single Chinese takeaway was joined by an Italian pizza place, run by a big Lebanese family. My parents had a friend who made us stuffed zucchini and kibbe. Our Greek neighbours shared every family celebration with us, and I grew to adore their name days and weddings and sunday get togethers, with the men smoking and drinking in the backyard, while the women prepared dolmades and baklava in the crowded, noisy kitchen.
My dad told me recently that the first Chinese family moved in to our suburb around 1956. He grew up with a Lebanese family next door, and maintained a friendship with his childhood friend for many, many years. The land that I grew up on had been part of my paternal great grandfathers citrus orchard. My high school was once part of that orchard, and the bush that backs on to the school leads all the way up to the Central Coast. My childhood playground was that bush, where there are aboriginal rock carvings that prove the original inhabitants of that land were there for a long time before we came. And gone for a long time before I was born.
The land I grew up on was Aboriginal land. No doubt stolen generations ago, but never talked about or acknowledged. I grew up never seeing Aboriginal people.
Our suburb was very white. English, Irish, Scottish. We sang “God Save the Queen” every morning in primary school. The Chinese takeaway was a lynchpin, as were the Lebanese family that made the best pizza I’ve ever had. I don’t know what it must have been like for their kids growing up there, where nobody knew the “N” word, but we all knew plenty of slurs for asian and middle eastern people. I think it would have been pretty awful.
As a child, my slightly darker skin tone, long dark hair, and large eyes marked me as “different”. In a classroom full of Stephanies, Belindas and Karens, the racially hard to pin down “Larissa” (absolutely an impossible name for Sydney in the 1970’s) was an anomaly. I was teased mercilessly, both on the basis of my race, and my inability to make friends, for my weird intensity, and my “off with the fairies” demeanor. I was also teased for being a lesbian, which made me think I might be, despite having absolutely no idea what was wrong with that.
I was 47 before I found out I had inattentive ADHD. And almost 49 when I found out I’m probably autistic too (diagnosis would be expensive, and not necessarily useful, so I haven’t sought one yet).
I’m still mixed race, but these days we see way more diversity in our cities, so I’m just a face in the crowd, and very rarely get treated any differently on the basis of race. I’m from Sydney, and I live in Auckland, so my day to day existence is in the context of large, fairly multicultural cities. Context matters, and while travelling in Sri Lanka, I am definitely treated with greater deference than the locals. You may have different experiences than I have had.
But my gender identity matches my biology (I’m cis gendered). I’m attracted (almost exclusively) to men (I’m heterosexual), I’m married to someone who shares parenting duties (I’m not a single parent). We have enough money to buy a home, educate our kid, and have access to great healthcare.
So I’ve got areas where I have great privilege, and areas where I’m not so privileged, and I can sometimes use an ally too.
Privilege isn’t a binary. There is no such thing as privileged vs. the under-priviliged.
Every single one of us has layers of privilege and lack of privilege. In the knitting community, the most visible people tend to be white, middle class, and female. Within that community, being male actually affords you both privilege and a lack of it, depending on the context. In the wider community, being male affords you more privilege than being female.
The context in which an interaction exists can’t be ignored either. Online, some of us have much greater influence than others. Influence is power.
If I, as a white woman, walk into a knitting group, I know I will be accepted (*at least initially) because it is very likely I will see other white women in the room. That is an example of how I benefit from being part of the dominant group.
Now, I might suffer from social anxiety, and I might feel really scared to walk into the room for the first time. Or I might have a physical disability that means stairs are a challenge. Or maybe I need to be close to a toilet, or maybe I care for a relative, and my time away is precious and scarce. There are a million reasons why walking into that room might be challenging, but not being white isn’t one of them. And that’s what privilege means – of all the challenges I might be facing, race isn’t something I need to deal with.
All my life I’ve felt apart and other. Maybe that’s autism, maybe that’s growing up in a leftie family, with artists and scientists and challenging the status quo as natural as breathing. Or maybe I’m just a sensitive soul who identifies with the underdog, and I’ve just grown accustomed to the obligation of caring for those that need a hand. Regardless of the why, I’ve always been driven to do what I can to make the world a kinder, fairer place.
In 2012, whilst at Macquarie University, I trained to be an LGBTQ+ Ally, and was part of the university ally program. I signed up because I thought it would be an interesting way to meet people, and it was an idea I believed in. I never expected to learn as much as I did. And I still have a lot more to learn.
ThroughWhere Change Started, I’ve signed up for the Anti Racism Leadership Accelerator program. I’m a few weeks behind (another ruptured disk, plus international travel) but I’m learning a lot, and I recognise that this is a lifelong process of listening, learning, self examination and reflection, and that while I continue to strive towards being a great ally, I’m bound to make mistakes.
So I’m promising to myself that if I do stuff up, I’ll listen to criticism. I’ll take responsibility for my mistakes. I’ll repair what I am able to, and do the work I need to do to prevent myself from making the same mistake again. And I’ll try to share what I’m learning through Yarny Allies, and try to build that up as a resource for everyone who is seeking to grow along the same path.
So all of that is a really long way of saying the following –
if you experience something differently to me, I promise that I’ll listen to your experience
if you share your experience with me, I promise that I will believe you
if I’ve done something that causes you pain or makes you feel unsafe, I’ll do whatever I can to repair and take responsibility
if I see someone behaving in a way that makes you feel unsafe, I’ll speak out
if you are speaking, and not being heard, I will make way for you, retweet you, promote you and amplify your voice
the areas in which I lack privilege are irrelevant to any discussion of your oppression. I will not use my fragility to dismantle your right to expression.
So, where do I stand on the Sockmatician?
Nathan is a nice guy. He’s gregarious, and friendly, and funny, and he does clever things with knitting. He’s openly gay, and openly living with HIV. That takes bravery and brains, for him to recognise that he can be a role model for opening people’s minds about what it means to be living with HIV. When I was in my early twenties, the world was crazy with fear over HIV, and openly declaring yourself to be positive was absolutely unthinkable then. That has changed, largely due to people like Nathan being brave enough to share their stories, despite any fear of conflict, retaliation, or rejection.
I met Nathan while he was in NZ, and I thought him to be a positive role model for the knitting community. That wasn’t long after he started promoting the use of the #diversknitty hashtag, and it had taken off. I believed he genuinely and passionately wanted to promote diversity within the knitting community.
Since I started writing this post (overland travel within Sri Lanka has meant it’s taken several days so far), there has been a further incident which raised the stakes significantly, so my initial statement would have been directed differently.
An oversimplification of events would run a little like this –
Nathan posts on instagram about it being a year since his promotion of the hashtag, noting it’s widespread use. And asking for a change in how the hashtag is used, requesting that people use it to spread only messages of positivity.
Feedback is given in comments that his post is undermining people who are using the hashtag, that they have defined what it means to them, and that tone policing their use of it is insensitive and tone deaf. At a time when the knitting community is undergoing growth and change, we aren’t yet at a point where we can all be sunshine and rainbows.
Some of the feedback isn’t super nice and conciliatory. Nathan responds to criticism by rudely dismissing suggestions that he might educate himself about the issues people are raising. His partner steps in and rallies supporters to gather information about people who are critical. Nathan insists that he is a nice guy and only doing his best to make the world a better place. He then goes dark, and then his husband and sister both post saying that he has been hospitalised (without any further information about why), and that people shouldn’t be nasty.
The two main instagram posts had gathered thousands of comments. Then they disappeared, along with all Nathan’s social media presence. Ben has updated his blog, referring to mobs, bullying, and portraying Nathan as the victim of online bullies.
Nathan was apparently released from hospital, and attended a yarn event to sign copies of his book. At this signing, he was approached by a woman who wanted to engage with him about how his actions had affected her. He had to be physically restrained from attacking her.
I’m not providing links – this woman has suffered enough abuse because of what happened, I am not going to expose her to the mob. I believe her account of the event.
There are two terms I need to introduce here. White Fragility, andRacist Bypassing. You may have heard these terms before, you may not have, but please take a moment to familiarise yourself if you aren’t already.
This is a pretty classic case of an avowed ally missing something important, getting called out, reacting defensively (white fragility), and using racist bypassing behaviours (hiding behind an intersectional identity, and avowed commitment to “the cause”). My experiences as a bullied kid don’t mean I have a universal understanding of the issues BIPOC friends experience, and I shouldn’t need to be shielded from criticism of my behaviour, just because I experienced something vaguely analogous. My actions last week of being a brilliant ally don’t give me a free pass from being thoughtless and unkind this week. Being an ally is a commitment that needs to be lifelong, if it is going to have any meaning, and the commitment to learning and continuing to learn and grow doesn’t have an end date.
Bottom line. mental health is serious. We should all take as much care of our mental health as we take of our physical health. Sometimes that means withdrawing until we have the capacity to engage at the level required of us. For a public figure with a wide influence, that level might require more capacity than for the rest of us. Take that time. Do not use poor mental health as an excuse to not listen to criticism. Do not use your own fragility as a weapon against marginalised people. Do not think you understand the universal experience of all oppressed peoples just because you belong to a marginalised group.
Being gay means you experience oppression and marginalisation – but it doesn’t mean you experience oppression and marginalisation in the same way that BIPOC people do. If you have been treated badly, you have some insight into what it feels like for you – don’t assume that you can extrapolate your experience into a universal understanding of oppression.
Do the work. Examine yourself. Listen to criticism. Learn from people who have different experiences than you. Apologise when you are wrong.
*Of course, I’m not “neurotypical”, and sooner or later, the people in the room will work out that I’m a little strange, and they might start treating me differently later.
** This examination of events is my own perspective, seen from great distance, and is possibly factually incorrect in some details. I was traveling when I wrote this, and though I sought support from two friends who were following events more closely than I was able to, all mistakes are my own.
Sometimes the drive to school can be relaxing. Sometimes, it goes more like this.
This mornings car conversation.
🦑 oh, they have a whole series of these books. There’s an Introduction to Empiricism!
🤦🏾♀️ so what’s your understanding of empiricism?
🦑 only what I got from “Sophie’s World”, about trusting the evidence of your senses.
🤦🏾♀️ so would you say that empiricism is anthetical to relativism?
🦑 what is relativism?
🤦🏾♀️ remember yesterday on “The Philosophers Zone” they were talking about the dangers of philosophy in school, walking a tightrope between relativism and indoctrination? That indoctrination teaches that there is only a single truth, and relativism that a single truth is impossible.”
🦑 well, I suppose it is then
🤦🏾♀️ so would you include “thought” as a sensory experience for the purposes of that argument?
🦑 for the sake of the thought experiment, I think it’s easier to think of thought and sensory experience as different categories. It just makes it easier to think about.
Adults threaten them with Star Trek if they won’t go outside. Kids accept Star Trek alternative and sit and wait for TV.
Adults then begin an in depth discussion of which series is the best place to start them, because TOS requires a historical context, and Next Gen has too many annoying characters, and Voyager is starting too late in the canon. And the movies are so wildly variable, you need a context to be able to make it through.
And just in case anyone is worried, this relates to a period of intense stress in the past, and other situations that have been ongoing. Mark ordered this ages ago, and my continuing avoidance of stabbing is worth celebrating.
Am hoping the toys I put in my Mighty Ape shopping cart are delivered tonight.
Just making up numbers, because recording things isn’t one of my strong points.
Squid has been working on year 10 (ish) maths, building skills in patience, research, persistence and resilience. Finding out the skills you need to learn in the face of challenges, something that he hasn’t really been getting from school.
Here is a link to a video that demonstrates why not being challenged is a risk factor for gifted kids.
Right now he is rewriting “The Princess Bride” in Zero Language. Probably not useful from a creative writing perspective, but his handwriting is legible, so we are also calling that a win.
I really don’t give a rats about what level he is working at. What I care about is that he learns how to deal with barriers. How to persist when things get hard. How to use your brain to foster a growth mindset instead of just expecting life to be easy, and to turn to custard when you face a challenge.
We’ve been having lots of conversations about intrinsic Vs. extrinsic motivation, and how to get through the boring tasks so that you have time for the fun stuff. A lot of kids with ADHD struggle with repetitive, boring tasks, and executive function is something that we are explicitly attempting to deal with in our “year off”.
We don’t know yet what next year will look like. I know that Squid would love to go to AGE full time, and I honestly feel like a year of exploration and low demand would be good for the soul. But I can’t see us finding the $20k per year, and I also can’t quite let go of my expectations that he should be able to function in a “normal” school environment.
Maybe, a year of play and exploration will lead to more demand avoidance. But maybe, some cognitive skills training and raising expectations will see him able to integrate back into a mainstream school setting, albeit with a few accommodations.
One reason mainstream school needs to be part of the picture is because of his strong interest in science – teaching chemistry without a lab or a licence to buy chemicals (or having any expertise at all!) isn’t an idea I can get my head around.
This afternoon we switch from the psychology team to the neurodevelopmental team at the Kari Centre. The anxiety for which we were initially referred last year has all but disappeared since leaving school. Two weeks ago, at his own suggestion, Inigo has moved back into his own bedroom to sleep. At the same time, he said he didn’t need an adult to stay with him while he sent to sleep, and has mostly slept by himself all through the night without any input from a parent.