For four years, I have lived with multiple myeloma: an autoimmune disease that circulates in my blood and my bone marrow. I still consider myself privileged. A good employer. Good insurance. An extraordinary woman who strapped me into the back of my seat during my roller coaster of pain and treatment. A really very close and very precious, very, very helpful. I cherish her like the pearl she is! She makes me a better patient.
Posted yesterday at 2:00 p.m.
And it is out of love for her and her fellows that I am writing to you.
COVID deprived me, like other patients, of my monthly meetings with my doctor. As a result, I’ve been deprived of about ten weekly chemo sessions that keep this myeloma in check… except that without them, the bad guy came out of his torpor to invade my vertebrae and compress my other marrow… my spinal cord. I gradually stopped walking normally and I gradually became incontinent…a slow deterioration that was coming without my being able to do anything about it.
It was counting without my faithful sweetheart, who documented my situation to alarm my medical team that something serious was looming: I entered the emergency room and followed the deployment of a well-oiled and efficient machine. Batteries of tests, scans, MRI, radio-oncology, etc.
I was in excruciating pain and the idea of being in the emergency room on an uncomfortable little bed, with blankets that were too short, without a pillow, for 24 to 48 hours delighted me little more than wild camping with a seizure. of arthritis.
PHOTO PROVIDED BY THE AUTHOR
The author and his guardian angel
My wife had already planned everything! She had prepared clothes for me that were easy to change, my pillow, a blanket in my size… She was taking care of me. She massaged me every hour before the pain dispossessed me of my body and drove me devilishly insane… She made me drink. She took me to the toilet. All tasks that would have been devolved to overworked staff, who, by the miracle of his angelic and benevolent presence, found themselves lightened, even relieved.
However, during this period, the comments came from a minority that was not silent enough for my taste: “Oh! there are a lot of people here… Yes, we’re in the emergency room, not the hotel! You know, you can be asked to leave at any time, or, madam, go out with me I would like to talk to you…”
I, myself sick, had to intervene to explain that this person at the foot of my bed would not go out to talk to anyone outside of my presence and that if someone wanted him to leave, he should talk to me about it first. The ER chief didn’t come to see me after all.
It was January 24 in the emergency room of the Maisonneuve-Rosemont hospital.
The CIUSSS de l’Est-de-l’île-de-Montréal had just published this directive for its clients and staff.
In the guidelines, we talk about blue bracelets and other odds and ends… The truth is that my wife spent 36 hours in the emergency room with me. She slept on the floor without moving anyone. Who can give such devotion?
Two weeks after this stay, I was able to see my doctor. I was stuffed with cortisone, codeine and other drugs up to my eyes to cash in on learning that my cancer had taken advantage of my deprivation of treatment to nibble me a little more skeleton, give me an aortic hernia, and solder my L2 lumbar…
My angel was there with me to take the hit. To ask questions. Take my arm so that I don’t say words that would depict my pain but would go beyond my thoughts. She was there ! She has been there for four years.
However, at all stages, caregivers are put “arms in the wheels”. There are so many staff to block their way… We change our masks. We wash our hands. We change the mask. We wash our hands. A questionnaire is re-read. And, we put back systematically questioning the role of the caregiver.
Two weeks after the publication of the caregiver guide, NONE of the staff members are acting in accordance with it.
I am 57 years old. I am a heavy man. I can be very persuasive… but when a little 80-year-old gentleman comes to inquire about his wife’s health in the emergency room for three days and they leave him “hanging around outside”, I find that odious. Our society has lost its humanity with COVID-19.
Our Prime Minister wants us to learn to live with the virus, but if it is to live like this, without respect, dignity and collaboration, ask for medical assistance in dying. We will save!
How can a population health administration become so bureaucratic that it forgets the very reason for its existence: the well-being of its population.
Let’s take care of each other.
Tomorrow, I will go back to the hospital… I will receive quality treatment. But there will always be someone who questions the presence of my guardian angel. And I’ll probably have to intervene with an overzealous member of staff who wants to stop one person from helping another. Is this the world we want to live in? Not me ! And you ?