September brought a weekend away – my first knitting retreat since that world exploded on me. My first “respite” weekend, and a chance to see friends I don’t see often, and friends I’d never met in person before.
On Thursday, I started to feel back pain. By Friday, I was depending on painkillers to keep me going. I wandered around Wellington and had as much fun as I was capable of.
Magan met me at Counter Culture, and Charlie picked me up to go to camp. By Friday evening I was feeling pretty delicate, and spent more time flat on my back in my room than is ideal for a social retreat. By Saturday night, I was staring to notice “insect bites”.
After the retreat, Charlie took me to their place on the Kapiti Coast, a gorgeous little town, with a perfect house with three friendly cats and a sea view. Winnie added paracetamol into my drug regime, and I spent Monday with them doing te Papa in “relative comfort”.
Returning to Auckland on Monday night, my first priority was getting checked out by a doctor. I’d realised by then it wasn’t a ruptured disc, it was most likely shingles.
So for the past three weeks I’ve mostly been at on my back in a darkened room, and since I’ve been taking the serious drugs, mostly pain free, if a little woozy. Mark’s been in a really fun show, which I got to see thanks to Alia and Toby and new drugs! Still can’t drive, but I am lucky to have kind friends.
In other news. Pinky McKay invited me to talk about the experience of parenting a trans kid for her podcast. It’s over an hour long, and the audio quality is slightly dodgy, but hopefully someone will get some validation, support, and information form it that will help them support their own kid. I’ve never held myself up as any kind of ideal, but I have always hoped to be a good example of failing forwards, and emphasising repair and growth over perfection.
Squid and I listened to it together today, and apparently I did ok (I skipped over some details and conflated events, which makes their brain itchy), but they said I did an ok job. That’s Inigo for “wild enthusiasm”. I’ll take it.
And on Friday, I did a run through of a talk I’m doing about “Neurodiversity at Work” for a corporate client. Despite having pulled the presentation together at the last minute (I’d been mentally working on it for months), and being on the silly brain meds, I’ve been told that the team loved it so much they are going to offer it out to the whole Asia Pacific region instead of just New Zealand when we offer it later this month.
So I am gathering more experience at public speaking, and educating about neurodiversity and accommodations (my fidget presentation is happening again next week for the Gifted Nex network), and I’m becoming more comfortable in my “expertise”. None of this feels comfortable and safe – but it does feel important.
And we had our first meeting with a lawyer about setting up GCL as a charitable trust. Feels big and scary and historic. Or that could be the drugs.
He’s had three years away from conventional mainstream education, and I could not be prouder of the young human he’s become.
In NZ, what would be the last year of primary, and the first year of high school are completed at intermediate school. His peers in Australia all started high school at the beginning of 2020, but here kids get an extra year of maturity and nurturing before entering the big bad world of high school. Even then, the practice seems to be to keep the first year about settling in, finding your way, and making connections without too much focus on academic achievement.
With amazing support from Diana, Bron, and Andrea (and many others!), he’s decided he’s now ready to take a step back into mainstream and start high school with his age cohort. Our local school has a brilliant reputation, and some close friends will also be attending. We’ve made connections in the learning support unit, and he also has friends who are current students.
So, while he has had an incredible three years at Age, and our family has gained so much from the time we’ve been there, now seemed like the right time to dip a toe back into the waters of mainstream education. This choice is a reflection of the success of Age and the nurturing he has had there. That this is even a possibility speaks volumes about the educational philosophy, connected community, and responsive and uplifting teaching he has had from Age, and from Diana at MindPlus.
We knew from the start that the early years of school were going to be the hardest for our tender kiddo, and opening the door to unlimited possibilities that come from a deeper pool, with more opportunities to explore, and more new and interesting people to get to know is a delightful thing to ponder.
Pink sparkling in the wedding flutes. Lighting by the fabulous Toby Smith. Flowers by Diana. Complete lack of interior design style, artist’s own.
Final appointment with the surgeon today. Of the three extra chunks he removed, two were uncomplicated and had clear margins. The third also had clear margins, but also more cancer.
So that pushes me into a different category on the rubric. My lifetime risk of recurrence goes from 15% up to 25%.
So that means a referral to a radiation oncologist. Fifteen daily treatments over three weeks (after I’ve had a month or so to heal). So I’m waiting for a referral, I’ll meet the new specialist, and get told the plan. Apparently the worst side effect is tiredness, and after the treatment is complete, my risk will be reduced to 3-5%.
For five years after this treatment, I’ll be having annual mammograms with the specialist service (not the general breast screen program), with a little extra scrutiny, but that is the only follow up treatment I will need (unless something changes).
At every stage of this process, it’s been “just one more thing”.
I’ve been becoming more and more reliant on facebook to keep in touch with family and friends, but recently one of my comments was removed for violating community standards.
Context. Picture of a woman in a dress. She says she felt pretty wearing it, but a random man came up to her in public AND TOUCHED HER STOMACH and said something about a blessed pregnancy/baby. I need not add that this woman was not pregnant.
My comment? “Men are stupid. Wear the dress.”
Hate speech. Against community standards. Wow.
And today, in response to a woman asking “help me explain to a man why calling women “girls” is not OK”, I post this link. And the post fails, because the link is “against community standards”.
So it’s ok for men to spread hatred and misogyny, but any attempt to counter it, address it, or educate, is hate speech.
Blog, you just got a whole lot more important to me, and I want to find a way to mine all my memories off facebook and record them here, because it’s basically just a matter of time before something I say gets me blocked entirely.
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.
For weeks I’ve been dealing with some medical stuff – a routine mammogram uncovered evidence that one of my boobs had gone rogue.
Second mammogram, and ultrasound wasn’t reassuring enough, so I had a biopsy last week.
Now if you’re thinking (as I was) that a fine needle aspirate is not that bad, you’re right. But this was not that biopsy. This was the sandwich press and apple corer type. Can. Not. Recommend.
Last night, Auckland went back into lockdown. This morning, they rang to offer me the option of getting my results by phone, which I accepted. Probably not ideal, but much easier for me mentally, to be sat at home in my trackkies, listening to my audiobook while ignoring the phone.
It’s not cancer. It’s something which might one day turn into cancer, or maybe something that might turn into the thing that might turn into cancer. And apparently we need to know which.
So I’m scheduled for some more fun adventures in boob sashimi in the 25th, and apparently it’s serious enough to be scheduled in spite of covid restrictions.
If I’ve been weird or distant, or more scattered than usual, there has been some stuff on my mind. It’s been scary, but I’m so fortunate to live in a country where this is routine, and completely covered by the public system. Total cost so far is just the Uber home after the biopsy.