A young woman who is dear to my heart recently posted this to her Facebook page. Her dad sadly died earlier this week.
If you have something to offer, a meal to make, time to visit, just show up or give if you can. I can’t tell you what we need. We have no idea. So just show up.
This is the wisest thing I’ve ever read in relation to a loss or crisis.
Just show up, however you are. That’s all you have to do. I am grateful to those who have continuously messaged me to see how I was, even if I responded only sporadically. Many of my old colleagues from the children’s hospital I used to work at have been exceptionally good to me: meeting me for coffee, checking up on me, sending me bits of inspiration. I’m lucky to know many mama bears who also have kids with disabilities – they understand that you are not guaranteed a pain-free life. They meet me for lunch & walks and send me funny gifs. I’m grateful to my adult daughter who phones and FaceTimes me regularly and texts me every single day. My eldest son sends me emails, always signed with love. My youngest son knows I need extra comfort – he pats me on the hand, carries the groceries and we watch cooking shows together in our pajamas.
My dear husband is my rock. He works two blocks away from the Cancer Agency and unfailingly meets up with me for coffee or a quick hug every day. Once he surprised me by coming to the waiting room and I was pleased to show his handsome self off to the other ladies. He always shows up for me, even though I know this cancer has hurt him deeply too. This is in sickness and in health.
Just show up. I, too, have to show up. I have to show up to treatment – Monday to Friday for twenty days, without fail. Each day I show up differently:
Day 1: I was furious and wounded
Days 2-5: I felt angry and crabby
Day 6: I walked in like a boss, strong and confident
Days 7 & 8: I was pained, terribly hurt and broken
Day 9: This was my worst day yet, rock bottom, sad and despairing
Day 10: I actually felt a glimmer of okay
How I show up affects my perception of my experience. On day 1, when I wrote Susan Gets Radiated, I was very low. On day 7, I observed the unfriendly radiation therapist – the one I referred to in my post – tie up another patient’s robe for him and pat him softly on the shoulder. I was not feeling angry that day, and I felt myself softening towards her. Yesterday I showed up in tears and admitted that I was having a rough day. She reassured me in her usual brisk way, but she also extended a tiny branch of kindness, commenting on the colour of my toenails. Less distracted by pain, I saw her in a better light now.
My subsequent Radiation Therapists have been gentler and friendlier. Last week I brought Aaron in and one young RT was exceptional in taking the time to explain everything that was happening in a way my boy could understand.
On better days, the bad part of the patient experience is still there (The price of parking! The blaring TV!), but I notice other things too: the housekeeping lady who chats with me in the elevator, the warm blanket, the tea cart that shows up in the waiting room, the way all the staff introduce themselves by name. I’ve figured out that people bring their dogs into work on Fridays. Finally I caught wind of someone playing the piano in the lobby. My vision is not as blurred by fear as it was the first day.
I wish these tiny touches were more consistent, but I grab onto them when I can. I have a theory that the whole patient experience should be designed (with patients) around our worst possible day, which is often our first, most scared day. Then these small comforts that directly contribute to healing are there all the time, every day, no matter what. I strongly believe that hospitals should be healing environments. Medicine can cure (sometimes) but it is always the love that heals.
Today was a better day. Mike was back home after being away on a business trip and we carpooled to the hospital together, listening to CBC Radio in comfortable silence. I went for a walk before my appointment and struck up a conversation with a lady in the crosswalk about pedestrian safety after we were almost side-swiped by a truck (!). We continued walking together, chatting for a couple of blocks. I stumbled upon a food truck that served Taiwanese Lemon Tea. I was thirsty so I stopped to buy one and I asked a fellow customer who was holding her tiny newborn – oooh, how old is your baby? For the first time, I noticed that there are actually hundreds of tiny white flowers blooming right in front of the Cancer Agency. The Vancouver skies were uncharacteristically blue and sunny today.
Inside the building, I didn’t have to wait to see the doctor – my name was called right away. My oncologist didn’t have his regular stool in the clinic room, so he hopped up on the treatment bed and I sat on the chair sipping my lemon tea and we talked about his philosophy on why people get cancer. (Rogue cells mostly, he concluded).
Later, when I was lying in the stark radiation room, Abba’s Dancing Queen played on the speakers. Some days I can’t hear any music at all, but today I did, loud and clear. I closed my eyes during treatment as I always do and realized that for the first time in many months, I actually felt okay. This feeling might not stick around until Monday, but I’m gonna take okay and run with it for this sunny weekend. Ten treatments down, ten more to go.