For over a year I’ve gone to a monthly support group meeting in Victoria, at the BC Cancer Agency. There are two to ten of us at any given meeting, plus Nancy, the trained counsellor/facilitator. To be eligible for this group, you must have a spouse with a life-shortening or terminal cancer.

Sometimes, one or more of my fellow members attends the meeting while their spouse is at the hospital right next door, maybe even dealing with a medical crisis. They walk over to join us for a few hours, then go straight back to their loved one’s side.

I love this support group. It’s worth the hour’s drive to Victoria (and back). It’s worth braving the Malahat traffic and rain/fog/snow and construction delays.

Why I Love My Support Group

I love it because, from that very first meeting I attended, I no longer felt special. It’s comforting to know that other people are having the same challenges as you. Group members seem to take turns going through the different stages of grief. I’ve seen anger, grief, denial and acceptance there. Sometimes I laugh as much as I cry.

This group was one of the few spaces I could be sad after Brock entered palliative care last September. One of the hard parts when your spouse is sick is that sometimes they are also your best friend and confidante. All of a sudden you can’t tell your best friend everything, because you can’t say: “Wow, I sure miss the person you used to be.” In my support group, I was finally able to articulate and mourn the loss of pre-cancer Brock — to people who were experiencing the same loss of their own best friends.

In a group like ours, it’s easy to find someone you think is worse off than you — and feel genuine sympathy for them, and better able to deal with your own challenges. I was grateful that Brock’s cancer hadn’t spread to his brain, bones or liver, as some of the other members’ spouses’ had, while others in the support group heard my story and were grateful they’d already raised their children or spent a lifetime with their own sick partner.

It’s also one of the few spaces where people like me, who are taking care of their spouse who is living with cancer, and who are grieving the slow decline and loss of their partner, are the focus of the discussion. Most of the time — at doctor’s appointments, in conversations with friends and family — the focus is (deservedly, understandably) on the person who is sick.

Often, a support group member will spend long minutes detailing the latest treatments and symptoms their spouse is experiencing — until Nancy asks: “And what about you? How are you doing?” and the person will be silent for a moment. It takes time to absorb the question, and then to ask ourselves: how am I doing? And then to respond.

Graduation

The group is for spouses, and therefore once your loved one dies your membership expires. Nancy invites those of us who have lost our person to come back for one more meeting, whenever we’re ready, to tell the story of our husband/wife’s death.

Brock died on September 20: that month’s support group meeting was booked for the 28th. I considered going then, but I felt so emotionally vacant that I worried I’d spook my fellow members. I had a responsibility to them to share what it was like “on the other side” of this experience of losing your partner, and my blankness didn’t feel right. I decided to give myself another month for “real grieving” to happen. I was sure Brock’s memorial service would help, and that was scheduled for the 29th.

But a month later I was still in this weird limbo of functional emotional numbness. And I decided I had to go to the group, because clearly this numbness was, in its own way, a “normal” reaction to loss. I wanted to show my support group friends how I’d responded to losing Brock, so that if any of them felt this same blank reaction in the future, they wouldn’t find it as unnatural as I have. Instead, they’d think: “Oh, Heather felt this way too. It must be normal. Therefore I’m not a sociopath.”

Someone at some point in the past year referred to this final group visit as a “graduation.” I graduated on October 26. I told my support group friends the story of Brock’s infection and then his death. I commented that — like in so many of the death stories we’d heard from previous members — Brock had died in exactly the right way for Brock:

1. He held on to life for as long as he possibly could.
2. My ever-active man was literally moving (technically, being moved) as he stopped breathing.
3. Brock liked all things to be done in a particular, uber-efficient way. As his parents, brother and I brainstormed the best way to reposition him in bed, and struggled to move him, I could just imagine him saying: “Ugh! I wish I could tell them how to do this more efficiently.” And then he let go, and died.

For a year I drove to Victoria once a month to talk and listen to the people in this group. Every month I wondered if I’d make it to the next meeting, or if I’d lose Brock first. I never marked the meeting date on my calendar more than a month ahead.

At the end of my final meeting, I felt complete. I’d closed the loop. I wish I could keep attending the meetings — I want to be there for these friends I only saw monthly, and (eventually) to hear their graduation stories. Because that’s another part of this group: we all know there will someday be a final visit.

Caregiver Burn-out

Between Brock’s diagnosis in 2014 and his death in 2017, I was applauded by at least three almost-strangers for choosing to stay with Brock during his illness. That seemed odd to me at the time — of course I would stay with Brock! — but now I suspect they knew better than I did how hard it is to take care of (and continue to love) a dying spouse.

Taking care of your life partner when they are living with cancer and dying from cancer is exhausting, at least emotionally and physically, and sometimes spiritually and financially too. One reason why I might not be wailing with grief daily is because I am exhausted from months of caregiving. I’m simply too tired to understand and accept that Brock isn’t coming back.

For some of us, we lose our partner long before they actually die. Brain cancer is an obvious example of this, when the sick person’s personality, intellectual and physical abilities can change dramatically from the cancer and/or the treatments. For couples who love to travel together, or be physically active together, they might struggle to find a way to connect once they can no longer get travel medical insurance and one partner is too sick, weak or busy with doctor appointments to have adventures.

Brock and I were lucky that he remained Brock until the very end, at least mentally. We were lucky that Brock loved thinking and debating so much that even his physical decline didn’t bother him too much.

Because we were able to maintain the best parts of our relationship, I didn’t realize how physically and emotionally tired I was from taking care of Brock until after he was gone.

Over a year ago, Shelley from Cowichan Hospice asked me what my hope was for Brock. I had accepted that his cancer was terminal, so I couldn’t hope for his recovery, but she pointed out that I could still hope for other things. So I hoped that he would live for as long as he could, and that he would have a peaceful death. I hoped that we would have no regrets once he died — regrets that we hadn’t done something differently.

Months later, I realized (thanks to a grief counsellor via Cowichan Hospice) that I wasn’t spending as much time as I wanted with Brock. Isaac and his active lifestyle occupied my day; I was missing my conversations and quality time with my sweetie. So I asked my mom to come stay with us for awhile, and she came for five whole months. I got five whole months to sit with Brock, while Isaac had adventures and bonded with his Grammy. It was a win-win-win-win situation, and thanks to that time I have no regrets. All I wanted was to spend time with Brock while I still could, and to take care of him as he became more dependent.

So maybe I am recovering from caregiver exhaustion now, and there will be a different kind of grief in my future once I’ve recovered. But it was worth it.

I don’t regret a minute.