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Terminal Cancer, Day by Day

Advocating for Advocacy

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Isaac was born at 34.5 weeks, by C-section. He came out early because I had developed eclampsia (aka pregnancy-induced super high blood pressure) and because the placenta was stupid and had stopped feeding him properly, so he was very small.

Holding Isaac for the first time in the Neo-natal Intensive Care Unit (NICU). He weighed 3 lbs 2 oz at birth.

I was an ill-prepared new mom. We hadn’t yet started our prenatal classes, and I had never cared for a baby. Brock and I had never before changed a diaper. Suddenly we had a newborn to take care of, albeit in the sheltered and uber-supervised world of the Victoria hospital’s Neo-natal Intensive Care Unit (NICU).

Isaac and I lived at that hospital for three weeks. The nursing shifts changed twice a day, and so every 12 hours I had a different set of baby experts advising me on how best to feed and care for my kitten-sized infant.

The advice/direction I received from the different nurses was often contradictory (“You need to get a nipple shield.” vs. “What are you doing? Never use a nipple shield!”), and eventually I realized I had to take ownership of this kid. It was my job to listen to all the nurses, and then do (or fight for) whatever I thought was in Isaac’s best interest.

 

It wasn’t an easy realization for me — I have always been a pleaser.

HEATHER: “I think that maybe we shouldn’t try to stick that feeding tube down Isaac’s nose again, because he seems to be crying and screaming a lot when we try. You’re the expert, of course, but.”

I thought Isaac and my 28 days in the Victoria and Cowichan hospitals was the worst experience ever, but it was actually just training for when Brock was diagnosed with cancer.

Advocates are essential: Heather proves the case with cancer anecdotes

Brock was a big, strong, vocal guy, but when he woke up in early 2015 after having his left kidney (and a gigantic octopus-tumour) removed at a Vancouver hospital, he was dopey with drugs and weak from surgery.

I spent every day at the hospital with him, from 8/9am until 10pm, and I can’t imagine what his experience would have been like without me there to advocate for him.

I don’t know what went wrong with his painkillers, but that first day Brock was in excruciating pain. He was in so much pain that he couldn’t talk, while the doctor tried to have a Serious Conversation with us in Brock’s hospital room. The doctor was being all solemn-faced and all I could see was Brock in speechless agony, contorting in his bed. Why wasn’t the doctor noticing this? (In retrospect, I think he was focused on trying to make us understand that Brock had only a few years to live. We remained in denial for 8 more months, probably due to not hearing that conversation in the hospital.)

I bolted down the hallway to find a nurse, so Brock could get a shot of something, and followed the nurse around until she arrived at Brock’s side with drugs in hand.

Another time, a doctor/nurse asked Brock where his pain was on a scale of 1-10, and when Brock said 10 the guy made him feel like a wuss.

HEATHER: “This man is a farmer. He is not a wuss. If he says the pain is a 10, then that’s a 20 for normal people. Please make it better.”

Heather stops the anecdotes and gets to the point

I believe that most health care workers don’t want their patients to be in pain. I think they have good intentions. I’ve also seen how busy and overworked they are.

The best way we can help the people we love who aren’t able to speak up for themselves (due to age, illness or temporary incapacity) is to be there with them, make sure they’re okay, and advocate for their needs when they can’t. We can ensure they get what they need, whether it’s medication, attention, etc.

It scares me to think that I will someday be in a vulnerable situation and not have someone to advocate for me. I intend to be very nice to Isaac, and train him to be an assertive, polite person.

Heather invents something that might already exist (again)

In light of the Baby Boomers approaching their older years, it would be a useful (and maybe lucrative?) service to be an Advocate For Hire. Maybe this is what social workers and home care aides are supposed to do. Or maybe there is a gap here … maybe someone approaching their needier years would find reassurance in having a thoughtful, attentive, assertive person in their corner, who checks in on them regularly, understands their advance care planning wishes and values, and knows the system well enough to advocate for their client’s needs.

I’ve been thinking about advocacy because I have family members who are caring for their parents. Some of these elderly folks are in care homes, some not. Some of these folks weren’t always good parents to their children.

These children (who are 50-69 years old) make regular visits: some bi-weekly, some daily. I think they are super heroes for doing this. I hope they benefit from the same attention when they need care themselves.

And I wonder about the elderly, the hospital patients, and the NICU babies who don’t have someone advocating for them.

Terminal Cancer, Day by Day

Early Exits

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On Monday, Brock was so unusually sick that I texted his doctor to describe the symptoms. Brock had slept for over 24 hours, he was so out of it that he could barely speak when he became conscious, and he’d managed to tell me that he felt flu-sick, which wasn’t his normal cancer-sick. Also, there was a hard, angry-red lump on his chest that was getting redder and angrier.

Brock’s amazing family doctor arrived within the hour and diagnosed Brock as having an infection. It was quite bad, and might be septic.

Brock sweated in our bed while his doctor explained the options to me, my dad and Brock’s brother in the living room.

We could:

  • take Brock by ambulance to the hospital so Brock could be given antibiotics by IV (which might not cure him);
  • stay at home and try to treat him with less-effective oral antibiotics; or,
  • we could nothing.  Brock would die from the infection, at home.

Fear not, you normal, healthy people: these would not be your options if you had an infection. You would be whisked off to hospital without the couch consultation.

Brock’s situation is unique because he is already dying. And when you know that a cancer death is looming, our health care system allows you the option to take an “early exit” (as Maggie Callanan calls it in Final Journeys), if you would prefer not to linger.

But knowing this, reading about early exits, and discussing advance care options and Do Not Resuscitate orders with Brock did NOT prepare me for the emotional tsunami of being in this situation.

Obviously I don’t want Brock to die. I want him to live for as long as possible. But I also don’t want him to suffer, and being in a hospital has many downsides for someone as weak as he is. Would they let me stay with him? Would he be comfortable, away from his collection of pillows and Lazy Boy recliner and memory foam bed? Would Isaac miss us too much, and would I be able to be with Brock at the hospital while also giving Isaac the attention he needs at home?

If I chose to keep Brock at home with oral antibiotics, would his family and friends judge me for that decision? Would I have regrets and blame myself if he died?

Luckily (oh so luckily!!) Brock and I had already discussed all of this. He’d made his wishes clear: as long as treatment meant he’d continue to have quality of life at home afterwards, he wanted that treatment. He didn’t want to spend the rest of his life in a hospital, but this infection didn’t carry that risk. He’d be treated, and then (if the antibiotics worked) he’d be back home with us, back to the Brock he’d been 24 hours before. If the antibiotics didn’t work, he would die in the hospital.

I didn’t have to consider all the options. I didn’t have to solicit advice from anyone. I just conveyed Brock’s wishes, and our course of action was clear.

It’s Saturday now, and I’m writing this with Brock sleeping beside me in our bed. He had four courses of IV antibiotics and we spent three nights in the hospital, me curled at the foot of his bed like a cat. He’s on oral antibiotics now, and the angry red rock of infection inside his chest has practically disappeared.

I am so grateful that he told me what to do, long before we faced that decision. I’m grateful that he endured the painful ambulance-stretcher trip to the emergency room, and restless nights in the hospital. We could have lost Brock this week. Instead, we’re spending a lazy Saturday together.

No regrets.