the grace period

good-vibesI 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.

  1. Only surround yourself with people who support you.
  2. Tell everybody who will listen. People want to be involved in some way. Don’t travel this journey alone.
  3. 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.

11 thoughts on “the grace period

  1. Samantha Chandler says:

    Sue,
    I always get a little thrill when I see one of your blog posts in my inbox. I look forward to whatever it is you have chosen to share with me today. I enjoy your stories and your views on life – the good, the bad and the, sometimes, ugly.
    I don’t know what to say to you today, other than that someone, way over on the other side of the world, is thinking about you. And you are wrong – you haven’t hurt the people you love. Don’t think that.
    I am trying to imagine reaching out and holding your hand – can you feel it?
    Samantha

  2. sue robins says:

    Dear Samantha – what a lovely lovely comment.

    YES I accept love from Australia. We actually had a trip there booked for March…we were soooo excited but then had to cancel because of this whole thing. BUT we are going to have a trip to Australia to look forward to when my treatment is over…it will be our reward. We will have to share a glass of wine, for sure. 😉

  3. Katharina Staub says:

    Oh, my dear friend Sue.
    I love you.
    I hate to see you have to go through this journey.
    I’m here.
    I will listen.
    I will share in your pain.
    You are grace. You are an amazing person.
    Don’t you forget that. Ever. Especially not in the next months. I’m here if you need me. Katharina

  4. Brenda Nesbitt says:

    I have only just become aware of your blog as of last month and felt an instant connection as I am passionate about the same things. My daughter is almost 24 and she is severely physically disabled, developmentally delayed and is very medically fragile. I am now a single mother with her and if it weren’t for the support of my nurses and careworkers I would never get through this on my own. My fear is becoming sick myself and what will happen to her if I do. My parents both just passed away last month and my team of staff did all they could to allow me to get to both of their funerals in Kamloops (I’m in Ontario). Without them I wouldn’t have been able to go. And with them I have less fear of handling everything I have to. They truly are my saviours. So I hope that you have a good support team for your son and to help you and your family. Hire help to clean and cook if you can. I have a really good document from my dietician that is designed to share with others looking for ways to help. If you are interested in a copy of it, please let me know and I will dig it up and send it to you. I know I don’t need to tell you this. Just from one Mom to another I hope and pray for the best outcome for you and will be thinking of you.

  5. Jenn says:

    Sending you much love, positive energy and light at this time in your life journey!
    May the love, gratitude and resiliency you have shared with others come back to wrap it’s strength around you! xo Jenn

  6. Amy says:

    Sue, sending you big hugs from Montreal! Sending you love and light. Crossing my fingers and hoping for the best for you!

  7. Amy E says:

    Oh Sue-
    I also look forward to your posts and like to savour them when I have a moment to myself .
    Tonight, my heart dropped for you. And then spread out to you across AB. We went through a cancer diagnosis with my husband last summer. We were lucky- a lot went right and we haven’t yet had to travel the chemo/radiation path. But oh I feel that fear and pain all over again as I read your words. I am in awe of you yet again- your vulnerability is heart warming. The telling was near impossible for us. And I had/have a hard time getting past the rage. Your words ring true. You surround yourself with love and positivity. Because we must. Big big hugs as you endure this next journey. Xoxox.

  8. Elaine says:

    It’s important to share our experiences my friend, telling your story helps to heal and when you open up and be vulnerable it allows others to trust and heal as well. Sometimes our resiliency starts out with a tiny spark and when you let people in, we can help to make the spark turn into that flame you need to keep going. My beautiful dearest Sue, I want you to know that the times when you feel weak I will be that friend who can help remind you how strong you are and how important you are and that it’s okay to struggle and be vulnerable. You got this girl, I know you can do this sweetheart. Craig and I are rooting for you and can share strength and energy and will be there anytime you need us to do whatever we can to help you and your family. 💚🤓

  9. Jonathan says:

    Dear Sue, sending big hugs and lots of love to you, your hubby and children. Wishing you strength and resilience and a good fight. I love your writing on health care and this bolt of lightning is no exception in illuminating your own journey. In the tradition of my ancestors, I offer this prayer. May your Great Spirit overflow with compassion upon you, to restore you, to strengthen you, to enliven you and to send you a complete healing of the soul and healing of the body, along with all the ill among humankind. Amen.

  10. Catherine says:

    Sue, I hate that I had to read this, but you are brave for sharing in the honest way that you always do. I am glad that the mammo tech was so kind to you, this is the group that I teach and train, and I hope they are all that good.
    You have a journey ahead, take it one day at a time and be good to yourself. There will be days that are ok and days that suck. Don’t worry about what other people think.
    Thinking of you next week sending good vibes from Halifax.

  11. Carolyn says:

    Sue, you are in my prayers. Stay the very strong classy lady we all love. My heart hurts for you. I was totally in shock when I read your words. I keep going back to why…. why…. … its not fair…. it totally sucks… you probably have these thoughts daily…. hourly… I can only imagine how it feels… we’ve had such great chats in the past… you have always gave me great council. I wish I was closer to help with Aaron…know that I think of you guys often. … more so now. … I will keep you in my prayers. .. you will get through this…. love snd hugs to you all.

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