It’s not over yet

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”.

Let’s hope this is the last thing.

Cheers!

Recovering well

Thanks everyone for the well wishes! Surgery went well, and being private means I got an icy pole in recovery, and an excellent dinner.

I’m now in my room, well medicated, watching comfort tv on my iPad and painting up a storm. I’ll be discharged before lunch tomorrow, and pathology results next Wednesday.

I’ve had visitors who gave me chocolate, and cards from two of my favourite kiddos.

Facebook, you suck

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.

Wow.

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.

The Story So Far

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.

It’s cancer.

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.

F*ck

It’s not cancer

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.

Monopoly in the age of Pandemic

Screenshot from the ipad Pandemic app. Also available as a board game, legacy board game, and on steam.

Fear is a huge motivator. Where resources are scarce, protecting yourself and your loved ones is a natural human response. Caring for people outside your own circle is a luxury that many people don’t have. I have that luxury, and I acknowledge that it is both unearned, and not universal.

That privilege means that I can take a meta view of the conversation around diversity and inclusion in the knitting community. It means that the outcomes of that conversation have zero impact on me personally. If a group isn’t welcoming of diverse voices and ideas, it’s unlikely to hurt me because I’m white, female, and now also pretty old (happy 50th to me!). On one hand, equity and diversity statements shouldn’t matter to me one jot.

On the other hand, do I have anything to lose from the world becoming more inclusive and welcoming?

We’ve all played Monopoly. Other than being deadly boring, it’s a reasonable enough game, with a simple to understand mechanic. You roll a dice to move around a board, buy property when you can, and pay rent when you land on property owned by another player. Own more property, get more rent, win the game. Land on an opponent’s property, pay rent, lose money, go bankrupt, and you are out of the game.

In order for me to win, you have to lose. If you win, I lose. Resources are finite, and sharing or being kind to your neighbours breaks the game. Nothing you do in the game can increase the number of resources available. In game theory, this is called a “Zero Sum Game”.

Applying this line of thought to diversity in the knitting community, you can understand why people are afraid. If I can no longer talk about my beloved childhood toy because it’s considered racist, what else is going to be restricted? I’m not racist, my neighbour is brown, and I like them. How can my love of my toy mean that I am a bad person?

It’s understandable that being called a racist is going to get some pushback. None of us think of ourselves as bad people. We are good people. Racists are bad people. I am not a racist, because I am good. For me to be good, I must not be racist. Good and racist cannot exist in the one person, therefore anyone calling me a racist is a horrible person.

When Squiddo was little, he LOVED playing games. We tried to keep it low tech, but he was too little for Scrabble, so we played a lot of Monopoly. But it soon became apparent that he was so focussed on winning the game that he wasn’t enjoying playing the game, so we started playing cooperative games.

Forbidden Island was a revelation to our family. We started playing from when Inigo was around 4 years old, and we played endlessly. Each player has a special ability, and they work together to recover parts of our ship and escape the island before it sinks into the ocean. Each player is unique, and contributes something to the team. If one player is lost, we all lose.

Next we played Pandemic, the board game. A more sophisticated game, this one involves treating disease outbreaks around the world, finding cures, and eradicating them. Again, we work as a team with unique abilities, and we live or die together as a team.

Pandemic is brilliant for learning communication skills, listening to other people’s ideas, and then deciding on a plan. Often the strategy requires multiple rounds of careful planning, and things can be disrupted as the game changes each round. So adapting to current conditions, and accepting change is important too. But we are all in this together, and no matter how hard it gets, we are all together, we are all important, and no voice is valued more than any other.

Once upon a time, someone called me out for racist behaviour. Then I learned that my behaviour was hurting people, then I changed. The key words here are “learned”, and “changed”. I learned because someone pointed my behaviour out to me (thanks Amelia!), and I changed, because I don’t want to hurt people.

I can’t say I won’t ever do another racist thing. I can’t say I have done all the learning I have to do to become anti-racist. But I can say that I am committed to the change. I can say that I recognise the harm I have done, and I am going to keep working. I can say that I believe in growth, and connection, and community. I believe that together we are more than the sum of our parts. I believe that life is not a zero sum game.

I want to see the knitting community grow and adapt to the changes that are happening right now. I don’t believe this is an “us Vs. them” scenario, and I don’t believe that there is one single voice that speaks for the entire community. I believe that through respectful dialogue we can find a way forward. I believe we have many shared values, that knitters want to be kind, and that diversity strengthens us all.

I believe that life is not a zero sum game.

I believe that we can all be winners.

If you are interested in more discussion on the psychology of “us vs. them” decision making, I thoroughly recommend this episode of The Hidden Brain Podcast.

•True story – I actually ruptured a disk playing Monopoly. It wasn’t worth it.

Happy Sixteenth

So today has been a day of amazing feels.
 
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.
 
Little kindnesses are everywhere.

Smiting Squids

There is a growing body of claims that Role Playing Games, and D&D in particular, are great for kids.

Being the owner of a kid, and also being scientifically minded, I have been doing my own single subject research for the past few years, and have come to the conclusion that smiting + social support + consistent play = engaged, happy, creative, social kid.

And since I’ve now been playing games with kids for more than half the year (one weekly game at each of two schools, plus another home campaign with kids, plus a campaign where the adults welcome a kid player), I thought it might be time to gather a few resources about playing with kids.

This article has a great overview of the benefits of RPG’s in a school setting.

Here is an interview with a Dungeon Master who is running sessions through an online school program.

My private facebook group for discussion about roleplaying games with or for kids.

An “official” video (featuring some famous faces) about the lifelong impact of D&D. Please note that one of the people featured in this video is an ex “adult” film performer, so don’t google her unless you have your filters on!

A TEDx Talk – “Why D&D is Good for You”

I have set up a slack channel for the kids I DM for to communicate with each other, I welcome parents to join up too. Please contact me to get access, as this is a closed server. I’ve also set up an account on D&D Beyond, so that the kids have electronic access to the Players Handbook and other resources that I have (they don’t have to pay to access this). Once they have set up an account I can send you (or them) a link to join my campaign.

At some point I may set up a virtual game so that kids can play from home, but for now I am trying to encourage face to face games to facilitate social connection, and get away from endless screen time!

I’ll continue to add resources here, and I welcome any questions you might have.