This kid is a darling. Last (probably!) day of Age school on Wednesday, last day of Mindplus after six incredible years with Diana, and he’s ready, able, and even excited to move on to new opportunities at Western Springs next year.
He’s been through so much, and to see this smile and confidence is a testament to us trusting our guts that school distress isn’t normal, and we weren’t going to pretend, and the incredible people who’ve been there along the way to lift us all up, and nurture and support us through. Bron and Andrea, our amazing psychologist, and a focus on strengths and growth, have us looking forwards with hope.
Ten years ago, I went into labour. Aubrey was already dead. Archimedes wasn’t expected to survive. I was 28 weeks pregnant, my waters had broken at 15w.
At 17w, I was told that both babies were dead. My private (expensive, homebirth friendly) obstetrician transferred into the public system for medical management of my “miscarriage”. That same afternoon an ultrasound confirmed two strong heartbeats.
The chances for their survival weren’t high. The risks for me were great. But I was grateful to live in a country where termination was available, and where I also had a choice to refuse it, and give my babies a chance.
I developed sepsis, and labour started. My wonderful specialist had a night off to celebrate her wedding anniversary(Roshini, if you ever read this, know that you were a bright, wonderful, lovely light on my horizon every time I interacted with you, and you made a traumatic experience so much more bearable). I told the duty nurses, I felt “funny”, and was told to go back to bed. I knew then that the signs of sepsis are hard to identify, and hard to communicate, but that feeling “off/funny/strange” was a red flag. My concerns were dismissed until I was obviously in labour.
They didn’t give me antibiotics. They didn’t try to stop the labour. They gave me a surgical consent form, and I had my second caesarian section.
I was wheeled off to recovery, and Archimedes was taken to NICU, with Mark. I was then taken back to the ward. It was hours and hours before I was wheeled to NICU to see them. Mark had been told it was hopeless.
Eventually I was allowed to see him. He died. Fe came and took photos. Family came to meet him. We were allowed to see him, they brought him to me from the cold place, and we did the crossword together. Eventually we said goodbye for the last time. I was due to be discharged from hospital, when my infection returned with a vengeance. I was hallucinating. Having conversations with people that weren’t there.
They tried stronger and stronger antibiotics. I didn’t respond. My doctor signed the paperwork to have me admitted to ICU. They brought in a special drip bag, covered in warning stickers. The staff hovered, I had special authority to use the “in case of emergency” antibiotics, and that afternoon, I recorded my first normal temperature. I got better.
It wasn’t rapid. I still have flashbacks and cold sweats about some of the procedures I was subjected to, and some attitudes from jaded medical staff who didn’t know my story. Who didn’t know how broken I was, how raw.
When they released me, I couldn’t walk 100m to the car park without a rest. I couldn’t go to the supermarket without sobbing. I couldn’t parent my beautiful child, who couldn’t understand why his world was upside down, and why his mama cried all the time. I couldn’t fathom the cruelty of the whispers and stares of the playgroup mums. I couldn’t do anything else but be “that woman” the one who went through that awful thing. The thing that we cannot believe could ever happen to us. The thing that we know we would never survive.
Inigo and I talked a lot. I did my absolute best to try to answer his questions with honesty and openness. One of the hardest things I have ever done in my life was discussing the philosophy of life and death with a three year old with a giant brain, while also not crashing the car through my tears, driving to playgroup, driving to see friends, determined to make life as normal as possible, when nothing was ever going to be normal again.
But we do survive. We don’t know how we can get through another minute, another hour, another day. We’ll lose friends because our sadness is self indulgent, and we’ll have to learn how to exist as a broken person in the world. It starts by breaking down our ideas about the world and how it works. our schemas, built up over a lifetime are shattered, and have to be rebuilt. Our new worldview needs to incorporate the idea that babies die, and that life can continue. And this is WORK. Grief is WORK. It takes so much effort to just exist, to just scrape away at pretending to be normal, and also recreating your mental building blocks.
And then today you wake up and it has been a decade. Our babies would be turning TEN today. And although their birth was followed by so much sadness, the intervening years have shown me the gifts that their birth have brought into my life. Having lost friends, I know who my real, ride or die friends are. Having survived losing them, I know my strength. Having rebuilt my world, I know who I am.
I know who I am.
Happy Birthday Archimedes Hare and Aubrey Michael. I am better for having known you.
If you know me, you know that I knit. I knit very slowly, and I don’t finish very much. I have knit socks, and they are a fun project, but they take about 20 hours of solid, consistent work to finish a pair.
So if I knit you socks, you know I really, really love you. It’s like the ultimate expression of love for someone who doesn’t need one of your kidneys. Yet.
Wendy is very clever and amazing in many ways, but one area in which she has verified champion status is in sock knitting. You might not be aware, but every year there is a sock speed knitting championship, and I am lucky enough to know a few people who have competed.
This year, Wendy was in the final 10, and came in second (iirc) IN THE WORLD. She is the silver medalist in making beautiful, complicated, and fully functional socks.
And today, while I’m planning my week around starting radiation on Monday, a very sweet courier delivered a package. And I started to cry as soon as I saw what it was.
Through this whole fucking saga, I haven’t cried. There has been a tear here and there, and the odd moment of “well, this is horrible”, but I haven’t actually broken and started sobbing until today.
I don’t know if I will wear these to death or have them framed so they can be treasured forever, but they are truly precious. Thank you Wendy.
So I got the call today about my treatment schedule. First appointment will be on the 15th of October, for “orientation”, with treatment starting the following Monday, on the 19th. Initially they had indicated the 22nd, but my brain rebelled at starting mid week, so they brought it forward a few days so that I could mentally compartmentalise each week as a separate entity. I am both slightly ashamed of needing to ask, and proud of myself for asking, because little things like that can really set me off kilter, and tiny accommodations can really help me.
Final day of treatment will be November 6th.
There is some weirdness with having my radiation treatment in “Breast Cancer Awareness Month”, because DCIS both is, and is not, “cancer”.
It’s cancer because it meets the clinical definition of cancer (abnormal cell growth with the potential to invade or spread to other parts of the body), and it literally has “cancer” in the name (Ductal Carcinoma In Situ – DCIS), but it’s not “terrible bad no good scary cancer” because it’s confined in the ducts, and slow growing. If it breaks out of the ducts and becomes invasive, you get to really belong to the cancer club, but DCIS is Schrödinger‘s Cancer. It is both completely banal and boring, and also fucking horrible and scary, but also fine, just have treatment and go home, and also, for fucks sake where do you think you’re going to put that giant fucking needle?
Today Mark and I met the Radiation Oncologist. Radiation treatment will start in 3-4 weeks, and I’ll go in for an appointment prior to get tattooed and measured for the treatment. The first appointment will take an hour or so, and a week after that I’ll bet zapped.
Each treatment takes about 5 minutes. I’ll feel nothing, and over time (maybe in the second week of treatment) I can expect to experience a burning like sunburn.
I should be able to drive myself to and from treatment, and I should be able to keep working, as long as I get enough rest.
Side effects (mainly skin irritation and exhaustion) would be expected to be over about 6 weeks after treatment ends. So by Inigo’s birthday at the end of November, I should be finished treatment and starting to be over the worst.
I’ve requested appointments late in the day so that I can still do the school run, and work, and life will be as normal as possible for the short treatment duration.
After treatment, there are no scans, follow up appointments, nothing until my scheduled annual mammogram.
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.