November 30, 2022 (8:35 AM)
If you’ve been following this blog since the Fall of 2019, you will know that I was diagnosed with cancer (multiple myeloma) at that time and that ever since I’ve dedicated the blog to exploring my relationship with ‘my’ cancer and its treatment. Lately, I’ve been compiling my blog posts into a Word file. Word tells me that I now have close to 150,000 words in that file. I’m sure I have double that in the blog since I started publishing it in 2012, the year I retired from teaching at North Island College. That’s a lot of verbal regurgitation.
It’s been a ride.
Looking back over the years it’s obvious how much of a rollercoaster ride it’s been. The thing is the rollercoaster has two primary seats and a number of others that can also be involved. Of course, I’m in the lead seat. If I didn’t have myeloma there would be no rollercoaster, but since I do have myeloma, any rollercoaster rides I’m on also involve my family. Carolyn is my wife but also my primary caregiver. It has not been easy for her. My daughters who both live in Vancouver have made every effort to support Carolyn and I on our ride. They have come here which is highly disruptive of their lives, never a word of complaint. One of my brothers and one of my sisters who live on the Lower Mainland have come to visit and help out. I have a sister who lives in Nanaimo. She and her daughter, Janice, come as often as they can and bring meals for us to relieve some of the caregiving burden from Carolyn. We are very fortunate also in that we have fantastic, generous, kind, and supportive neighbours.
I can only go by my own experience but living with myeloma for anyone (and its treatments) means that some days we feel fine (more or less) and other days we feel crappy. Not long ago, after my last disastrous treatment and hospital stay, I spoke with my oncologist at the BCCA in Victoria. I was determined to stop all treatment, chemotherapy, and radiation, which I did. It seemed that I would always get a high fever and some form of infection following treatment. Last month I wrote about how my last chemo treatment almost killed me. Of course, stopping all treatment has its consequences.
As I noted in a previous post, the upshot of ceasing treatments means that I now have to face myeloma head on without the help (or hindrance) of treatment. I am now considered palliative, meaning that any treatment I get now aims to deal with pain alone. So, tomorrow late afternoon I go to the hospital for a CT scan of my right femur. The palliative care doctors want to know what the state of that femur is to better decide on what to do about it. They may recommend surgery. When we know more, we’ll decide what to do. I’m not sure what to think at this point.
December 1, 2022 (8:00 AM)
It’s probably the coldest day of the year here today at -5˚C. Snow is deep in the yard and we’re expecting more today and tonight. It’s quite bright out now but that can change quickly, just like how I feel.
Yesterday I introduced the role of caregiver. Caregivers, family, volunteers, or paid members of palliative care organizations are essential for people who are sick or somehow disabled and who can’t always look after themselves, who can’t cook, feed themselves, do laundry, wash dishes, etcetera. Caregiving is tough, one of the toughest jobs around. Imagine going to work not knowing what will be expected of you when you get there. Never mind all the bum wiping and other physically related work that is expected of you. Some of us who need care are quite large and heavy. Caregivers risk injury to themselves as they care for their charges.
For some caregivers who provide in-home care the issue is mental illness or dementia. Imagine going to work and immediately getting verbally assaulted and insulted by the person you’ve come to help. It can be the same in the hospital. While I was there, I often heard caregivers, nurses, and aides, get yelled at and abused in a number of ways by patients. Or the issue can be that the patient may have had a stroke or are otherwise incapable of communicating verbally. Professional caregivers are normally prepared for all exigencies and requirements of the work, but there are certainly times when the work gets overwhelming and tiring. There are several resources available through government and non-profit organizations that can help caregivers. I list some of the more obvious ones here along with their web links. This Island Health website contains a lot of links to other resources. I don’t feel the need to replicate all of them here. A principal non-profit is the Family Caregivers of British Columbia. It is funded by Island Health, United Way, and the Province of British Columbia.
December 2, 2022 (12:20 PM)
There is a weather warning posted online by Environment Canada for our region indicating that there might be up to a 15 cm dump of snow today. So far, the snow has been light but it’s picking up now. I’m still expecting to go to the hospital for a CT scan at 5:15 PM, but we’ll see. We haven’t heard from the hospital yet. We’ll see.
December 3, 2022 (10:00 AM)
Heavy snow out there. It snowed a lot last night. I did go to the hospital for a CT scan. It was snowing hard, but David did a stellar job driving the car, which is great in the snow. The hospital seemed deserted, but that’s an illusion, of course. The wards are full of people behind closed doors, and I’m sure the emerg was busy, but the reception was empty, suitable for bowling.
December 4th, 2022 (9:22 AM)
So, I wrote on December 1st that it was the coldest day of the year. Well, today is even colder at -6˚C. It matters not to me, not in the slightest. I sit here in my recliner, nice and toasty. I can look out to the beautiful scene outside, but from the comfort of my living room. Works for me. I have good meds and it seems that I’ve been able to figure out how best to take them to minimize pain.
I’m still old and I’m still dying, but at least I have a lot of people supporting me. So many people die alone, violently, and/or in excruciating pain. I’m going to try very hard not to be one of those people. I aim to die peacefully with some good meds to deal with any pain issues I may have. When my ma was dying, the nurses came frequently to give her a shot of morphine. That seems like a good way to go although my mother wouldn’t have been able to tell you one way or another. From her bodily movements I don’t think that she was in a deep state of peace. She was agitated at times. It was almost like watching someone in REM sleep having involuntary limb movements.
One of the generous neighbours I mentioned above gave me a book to read. Carolyn just finished reading it and found it delightful. Now, I’ll read it. It’s entitled: With the End in Mind: Dying, Death, and Wisdom in an Age of Denial. It was published in 2018. The author, Kathryn Mannix, is a British palliative care physician. As you can tell from the title, this book is right up my alley. It’s not an academic book, so no references. You won’t be reading any quotes from Ernest Becker* in its pages, but Becker is everywhere in the book as the scholarly backdrop to a book like this.
I’ll leave this post for now. It’s long enough and I need to get on with reading Mannix so that I can discuss her book in my next post. If you are so inclined and you want to read a little scholarly background material for a book like Mannix’s, check out the first couple of dozen posts in this blog, the ones specifically about Becker and The Denial of Death.
Bye for now.
*This is the first in a series of posts on Becker’s and related work. I published it in 2014: https://rogerjgalbert.com/2014/01/28/ernest-becker-1-of-mouths-digestive-tracts-and-anuses/.