The doctors talk to me now like car mechanics do when you haven’t any money. With money it is ‘Oh, the transmission needs work, then in a few months we should…” But knowing that you are without money or options they tell you, “It might last a few months, or it might go a few weeks, no sure way to tell.”
After hearing the metaphor Linda paused then said, “I think you’re right.”
I’ve been struggling for most nights with my diaphragm, with my lungs not working, as the bed is elevated, and elevated again, until I am sleeping sitting up, as I suffocate else. ‘Beth, wake up!’ Linda called, and she helped me roll over to the best access for the good lung. She said that breaths had been softer and further apart until, while asleep, I had lifted myself up to take a breath.
I wonder if I have the time to rest and get strong enough between exercising. I watched Wit with Emma Thompson about, like me, a Doctor of Philosophy who studies 17th century metaphysical poetry. She has stage 4 ovarian cancer and as she says, “There is no stage five.” The writer, Mike Nichols went on to create Friends In Deed, a group for those with life-shortening illness’. They have the Five things to remember, of which I no longer qualify for four of them. They advocate the Life of Quality, which I also do, over the ‘quality of life.'
The film made me laugh till I cried at the parts I was not supposed to laugh at. I guess the idea of intestinal lining irritation as a major side effect isn’t supposed to be funny, but then I have been working on manually breathing: literally using my arms to force the air out of my lungs and pull more in. But then, “Not breathing” or “Heart stopped” isn’t usually told to you as a side effect.
I went to East Sooke on Saturday, and it was hard going. But then, it seem that everything is merely a level of hard going these days, so I might as well go someplace that is cool, beautiful and home. This is where I learned to be a Canadian, in East Sooke, and so this perhaps is ‘my land’.
The song, After the Storm, has a significant following after being heard in cancer clinics, hospital wards, recovery, the palliative playlist. It was in East Sooke that I learned to hear the heartbeat in the land, the ways of moving slowly to walk among the deer, the rabbits, the cougar now and then, and birds, the crows playing in the wind that sweeps the long grass, which ripples like ocean waves.‘Remembered our own land/what we lived for’
Death IS big, and I am small, oh how small. That I’ve learned too. But mostly I learned that kindness, the comforting kindness is something which is the highest gift. So often I have to balance in the narrow margins of my disease that I can’t relax, and only after a long time, after I am well and truly safe. Once my body accepts that it is cared for, in all the aspects of that word, does my body allow me to cry, but only a bit, because it can threaten the air passages.
I laughed and laughed as Emma vomited in Wit, to the cadance of ‘Oh God, oh God, oh, okay, maybe….oh my God’ while rocking back and forth is one I know too well. Sadly, ‘intestinal irritation’ doesn’t tend to make you a poet. I had rejoiced that day as I had finally, after some weeks, not bled anally, just from my nose. Though I woke up with my eye full blown of blood, the red out-colouring the white, with complete red saturation after a quick pull down under the eye check.
How much do I fight because I am afraid of what happens next? I’m not sure, though as the film Wit shows, pain reduces us all to the point where all we desire is comfort. My pain too comves in waves, great giant wave surfing ones, where the slightest sound is physically painful. And my back, now full of chemical burns from the patches changed every other day, seems a preferred pain. Better than a bad pain, which is what I fear, those times when the patches or the nerve pills are forgotten and I am going to have to survive six or 12 hours with only break through meds and two of the three main pain agents.
“How is it at 200 mg?” The doctor wanted to know.
“Oh, a lot better, I think, I still have the pain but I only use three of the breakthrough pills a day.”
Linda interrupts, “Don’t forget before the nap, and overnight.”
“Oh, right, then only five or six break through.”
The doctor’s face is a study in micro expressions, “So how many was it last week?”
“Uh, 15 a day, no wait, what is three pills every four hours?”
Linda interrupts, “More like three or three and a half hours.”
The cost of all those tree roots and going on the back wheels of the manual wheelchair plus the up and downs was four hours struggling to sleep and breath, and failing. A living hell, where a single breath measured time like hours, in and out of consciousness until enough minutes of sleep were ticked by to start, as I lay gasping. That was part of the cost too. But it is a lovely place isn’t it. More pictures tomorrow/later. I just wanted you to know that I am, and I sent out a couple postcards, which is my defiance against the universe, though Linda and Cheryl did most of the work.
Weekends are odd times, now that I am able to go out after a couple years, seeing people who thought I died last year. It makes the conversation rather stilted. They can’t say, ‘Looking good.’ So I say, “Like tile rot, you can’t get rid of me that easy.” Then I laugh until the shocked look fades and they laugh with me.
6 hours ago