I woke up at 4:45 am. The cat heard me rustling and started meowing outside our bedroom door. I have to figure out a way to stay calm. I have the doctor’s appointment at 10 and then nothing so maybe I will go to the dog beach. I’m trying write this on my blog and just post it but I don’t know what to say.
I guess I’ll start here.
I write about disability, motherhood, inclusion and patient & family centred care. Most of my work is drawn from my experiences being the mom to Aaron, who is 13 years old and has Down syndrome.
Now it is my turn. Here’s where family centred care turns into patient centred care. On Monday, I was diagnosed with Invasive Ductal Carcinoma (IDC). I didn’t know what that meant either. It is breast cancer (carcinoma) that started in my milk ducts (ductal) but has spread elsewhere (invasive).
The past three months have been a a diagnostic gong show of delays and fuck ups (thanks British Columbia health system). I termed this my grace period – the time before everything changes. But I’ve since realized that all of life between when we are born and when we die is actually a grace period too.
I was numb with shock after the call from my doctor with my pathology results. I’d like go back to feeling comfortably numb, but the shock is slowly starting to peel away like a crusty bandaid, exposing something horrible underneath.
Telling people has been hard. This is especially true for my children – my two adult kids – my beautiful, gentle girl and my tough musician son -and my one teenager with an intellectual disability. I never know how much he understands but it is always more than I can ever know.
I had an important conversation with a friend who generously picked up the phone immediately after he received my email. He shared his wisdom from his family’s own recent experience.
- Only surround yourself with people who support you.
- Tell everybody who will listen. People want to be involved in some way. Don’t travel this journey alone.
- Approach this with positivity. You can choose to be miserable or you can choose to be positive. Choose positivity. You have to endure.
This blog is my version of telling everybody who will listen. Forgive me if I don’t call you back or respond to emails. I’ve read your words and I’ve heard your voice, and for that I am grateful. I’m sorry if I didn’t tell you myself – the telling is hard. I’m not happy to have a new well of writing material to draw upon. No, I didn’t need more street cred in the area of patient and family centred care. But I am a writer and I share stories that are important to me, and writing does helps me make sense of random events. I know that telling my story will help me heal.
Since November, I have seen many health professionals. I choose to only remember the kindnesses. Like the mammography tech at BC Women’s who stroked my arm when I was administered the sharp freezing for my biopsy. (News flash: needles in your boob when you are imprisoned in a mammogram machine really hurt). She also brushed my hair away from my face when it fell into my eyes, causing instant tears to well up in my eyes and slowly drip onto the hospital blue pillow.
My sweet family doctor is a treasure. She called me late one afternoon when I was driving back from my appointment with my terse surgical oncologist. She said: “I just called to see how you are doing.” She’s the only clinician so far who has taken the time to ask how I was feeling. I am so thankful for her.
I have surgery booked in a week and then a year’s worth of chemotherapy and radiation treatment. This is the long haul and I’m scared. I’m wearing fear like a heavy cloak – it permeates everywhere. Most of all, I hate that I’ve hurt the people I love.
Here’s to more simple acts of kindnesses. Here’s to those who took the time to pick up the phone. Here’s to being open to new people appearing in my life. Here’s to forgiving the people who have already said stupid things. (I’m really busy, but I’ll try to rearrange my schedule if you really need help. Um, thanks?). Here’s to finding humour in the dark. Here’s to character building (I guess I haven’t had enough). Here’s to comfort for my husband and my children. Here’s to resiliency.
And here’s to grace, too. I don’t have it right now, but I hope to discover it along the way.