Tag Archives: cancer

Do Not Resuscitate

Brock asked his palliative care oncologist if he should not drink alcohol while taking a certain pain medication. She said: “Why not? If you want a drink, drink.”

He was hesitant to accept sleeping pills (even though he wasn’t sleeping well), because he didn’t “want to get addicted to them.”

He was nervous about taking “too many” painkillers, even though he was in pain.

One of the biggest transformations we’ve undergone over the past 2-3 years of Brock living with cancer is overcoming these “healthy person” attitudes. When you’re sick and dying, it’s important to get the sleep you need: the small risk of addiction simply doesn’t matter. It’s important to control your pain, to protect the quality of the life you have left. And why deny yourself the things you find pleasurable, whether that’s a well-made Old Fashioned or a McDonald’s Big Mac? Life is too short to be a martyr and suffer needlessly.

When we turned from “curative” care to palliative care, Brock signed a Do Not Resuscitate (DNR) form. We have copies of this in our vehicles, in my purse and at home. Normal People call 9-1-1 if there’s a health emergency, and paramedics are legally obligated to perform CPR (if it’s needed) when they arrive. CPR can break or fracture ribs, and cause stress and needless drama to an otherwise peaceful, natural death. Normal, Healthy People don’t mind a fractured rib if it means saving their life, but for someone already close to death it’s a painful and offensive final blow to their diminishing quality of life.

Ever since Brock signed that form, one of the hardest parts of my “caregiver” job has been to decide when Brock needs emergency help, and when it’s a natural progression of his cancer and I just need to be patient and wait things out.

One night in May I came into our bedroom and found Brock lying in bed, his face as red as a marathon runner’s. He told me he needed to get up and go to the bathroom, but he said he couldn’t breathe well enough to stand. He started to fall asleep. I told him this wasn’t okay and so we needed to go to the hospital, but he said he couldn’t make it down our stairs. So I woke up our neighbour/friend Dan, who came upstairs in case Isaac woke up, and then I called the ambulance and started packing.

This was the right decision: Brock’s tumors had eaten up so much of his lungs that he wasn’t getting enough oxygen. The ER staff put Brock onto oxygen and we were set up with an oxygen concentrator at home by the time Brock came home the next day.

A month ago, Brock spent two days sleeping. This wasn’t overly concerning, but he was barely conscious when he did wake up to use the washroom: he was delirious and saying weird things.

BROCK: “Is that our dog barking?”

(We’ve never had a dog.)

I called our super star home care nurse hotline and Nurse Bonnie calmed me down. It could be an infection, or it could be a natural downswing in Brock’s health. She said to wait and see how he was in the morning. (Mid-story pause here to share two tangential thoughts.)

Tangent #1:

Another item to add to the list of “toughest moments” is every time I’ve had to make a decision without being able to consult with Brock. We consult. It’s what we’ve always done through our 11 years together. He argues for facts and I argue for instinct, and between us we make good decisions. I don’t like making decisions without Brock having a say, especially when it concerns him. Being the sole decision maker reminds me that our 50:50 partnership is changing, and I do not want that.

Tangent #2:

Actually, this is more backstory than tangent.

There have been numerous times in the past 2-3 years that I’ve thought, “This is it, Brock can’t possibly get sicker/weaker. He’s going to die soon and I am so scared.” But then he does live, and continues to get even more sick/weak. I’ve never known anyone dying well enough to witness the deterioration. I vaguely understand the process, thanks to reading books like Maggie Callanan’s Final Journeys and Final Gifts, but this is Brock and my first time experiencing it. I’m continually shocked by just how sick/weak Brock can become, and yet continue to live.

Back to the sleeping + delirium story:

So I talked with Nurse Bonnie and I asked her if this could be it: is this what dying looks like? She said maybe — Brock might wake up and be fine the next morning, or he might be sick and treatable, or maybe this was the end.

And (strangely) I felt relieved, because I wasn’t overreacting or being melodramatic. When your loved one is saying crazy things and can’t seem to wake up, it’s terrifying — and that’s okay. Our life these days is terrifying on a regular basis, and that’s to be expected.

I wish we knew exactly how long we had left together. So much of the panic and stress I feel is due to this uncertainty. If I knew we had a year, I’d find a way to get Brock on a Bucket List trip to the states. If we have a week, I’d order take-out every night for dinner so I wouldn’t have to be in the kitchen and miss those extra hours reading beside him while he naps.

Dying is for the Young

I’m not sure how I feel about that title, but we’re going to go with it.

It occurred to me the other day how lucky we are (????) that Brock and I are only 38 and 37 years old, as we deal with his having terminal cancer. Specifically: those of us who will someday die a gradual death, due to aging or a progressive disease, will naturally get weaker and weaker as our bodies slowly fail. For someone as sick as Brock is, even having a conversation or sitting tires him out.

Sometimes he doesn’t have enough energy to swallow water.

Take a moment and think about how tired you’d have to be, to not be able to swallow.

Normally, someone at this stage in their life is in their eighties or older. Their spouse (if they have one) and friends are around the same age, with their own health challenges. Their parents are deceased. Maybe they have some children, or even grandchildren, who aren’t estranged, who live nearby or who are able/willing to relocate, and who have the work/life freedom to be able to take on the role of caregiver.

Brock, being 38, has a healthy, able-bodied wife of 37 to support him all day, every day. He has healthy, able-bodied parents, in-laws, a brother and sister-in-law. His friends are generally between 25-60 years old.

So when Brock needs help getting up from his Lazy Boy, I’m there — either to pull him up, or to carry over the walker that will lever him vertical. I can move his oxygen tanks up and down the stairs, no problem. I can carry a comfortable folding chair for him to use at the farmers’ market, or when we go to the park with Isaac, along with his bag of supplies.

If we need reinforcements, we have our family and friends on stand-by. Easy peasy.

Now consider the 87-year-old childless widower who is in the final stage of his life, who is sometimes too weak to swallow and who lives alone. Who does he have to keep him company? Who will switch over his oxygen source when there’s a power outage in the middle of the night? Who will help him up from his Lazy Boy recliner?

Hooray for Hospice

We did an on-camera interview with local filmmaker Nick Versteeg and Shelley from Cowichan Hospice on Friday. The video will be part of a fundraising campaign to build a proper hospice house with seven rooms for people who are dying and who (for whatever reason) can’t or don’t want to die at home or in the hospital. People and their caregivers will be able to stay there through the dying process, getting  the professional health care and support they need without having to be in an institutional, loud, chaotic hospital. Currently, there is only one full-service bed like this in Cowichan.

Victoria has a hospice house. I’ve heard only good things from the families in my support group that have used Victoria Hospice. Brock and I would love to see a similar resource in Cowichan, which is why we agreed to be part of their video project.

Because not everyone has a 37-year-old spouse to take care of them.

I see Brock losing his strength and mobility, and I suspect I’ll only really understand what he’s going through when I’m at that stage myself: with luck, at eighty-something. With luck, Isaac or a grandchild will be there to care for me at home, or I’ll have a hospice house to go to.

And sometimes I feel lucky that, even though I won’t be able to have Brock with me for the next fifty years, I’m able to watch him grow old now. It’s like we’re living one of those magic-realism Hollywood stories, Benjamin Button-style, and his life has been fast-forwarded while mine has stayed real-time. I am grateful that I’m able to help take care of the man I love when he needs me.

(For more information on the Cowichan Hospice House project, click here.)