Endings and beginnings

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.

You’ve come a long way baby.

Ten

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.

The ugly cry

The ultimate expression of love

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.

Are we aware enough yet?

Card from Ella, 13

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?

And then there is this cheery news. DCIS Carries Three-Fold Risk of Death.

So, roll on November 7th. And remember that now is a great time to make your mammogram appointment, do a boob self check, don’t ignore warning signs, and denounce white supremacy. Get it early.

Radioactivity ☢️

Pink for Breast Cancer Awareness Month

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.

Cured.

But no promise of superpowers…

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.