Today feels like a miscellaneous kind of day. So here goes:
It is the Labour Day long weekend. When I worked, I like to take a week off in September as I loved the cooler weather and the trees turning colour. Choosing not to drive right now1, I am going to have to make sure that I get out at least a couple of times to see the colours.
I am not sure what to do with my head. It’s a scruffy mess. I don’t care about loosing my hair and I have no intention of wearing a wig or anything like that. I may put a hat on once the summer is over. I really don’t care about losing hair, I just don’t want it to look messy. My hair is very thick which is probably why I have only lost about 75% of it. Decisions, decisions.
I am so grateful to all the friends who have helped us out over the summer. You all know who you are and we are looking forward to hosting you at our house for a thank you party.
I continue to be grateful for music. I don’t know what I would do without it. Laying back with my headphones and just letting it take me away for a few minutes is such a release and relief.
I find myself wondering how we got here. How did it go from working part-time and planning to become a life coach to someone who is now has metastatic breast cancer which has no cure. It makes no sense to me. If I had waited when I saw that very vague symptom on my breast, I would likely be dead by now.
I am sick to death of being in pain. I have lived it with it for so long to now have it get worse because of the chemo makes it so much more difficult to get even activities of daily living. I can’t deal with clutter. I don’t have the energy to move stuff if it’s in the way of what I need. And god forbid, something drops and makes a mess and I am in tears. The CT showed that my left hip is really bad and that my lower back is deteriorating. The hip is due to a car accident years ago. The lower back is all ulcerative colitis related. I have a type of arthritis that people with ulcerative colitis get. It involves 5 joints.
I have to say that I have been thinking a lot about how I want to die. I don’t want to do it at home. It will be a hospice for me. I also think I want to use the new legislation: Medical Assistance in Dying. It just seems so civilized.
I am so looking forward for my last 2 chemo doses to be done. I will have a 3-week break when I can get my hand fixed. Right now, getting back to crocheting is keeping me going. I don’t know that I will get there but I gotta have something I can hope to attain.
A combination of low hemoglobin, anti-anxiety meds and fatigue from chemo makes me think I shouldn’t be behind the wheel. ↩︎
The Trans Mountain pipeline appears all bit dead. Thank you Supreme Court of Canada. So now, Rachel Notley is taking all of her marbles and going home. No more federal climate plan for Alberta. Even though she is an NDP, I don’t think she gets what that means. As an NDPer, I am appalled by her behaviour first the banning of BC wines and now this. She is acting like a spoiled child, acting rashly and without due for thought. I know that many in BC are celebrating this ruling.
I have always been a day dreamer. It is one of my favourite things to do when I am falling asleep. I think about the future, the things I might do, the jobs I might get, the changes I might make. Lately though, my go to relaxation mode of day dreaming is just making me more and more depressed.
Normally, my day1 would start and I would go down the path. Maybe it would be about a new job. I would see myself at the interview, taking control of the room as I often do in these situations. Everyone in the room wants to hire me and this great job is now mine. I go on to great success and receive many accolades. Life is great.
When I was a kid, I used to dream about my birth mother showing up and taking me away from the hell that was my family. Without these day dreams, I am not sure how I would have gotten through childhood. Suffice it to I no longer I have those dreams. But I do still have biological family. My mother’s cousins have dismissed me by calling me the ‘situation’ and agreeing to do what birth mother wanted: which is no contact. I still have two ½ brothers. I now have day dreams about meeting them and having them accept me but I am pretty sure that’s not going to happen.
Now, as I fall asleep, I think about the things I will never get to do2 and things I will never have to do again3. As I fall asleep these days, the familiar day dreams come to me and my mind just slams that door shut because I can’t go down that path anymore. So now I lay in bed and think of all the things I won’t have to do anymore:
I will no longer have to deal with my fucked up family in any form: biological, adoptive, or step.5
I will no longer have to live in pain. After 13 years of it, I am more than done.
I will no longer have to watch our society, and the world devolve into an authoritarian nightmare where genocide continues unabated6.
I no longer have to watch how women are beaten and raped for entertainment7. Or how religious culture makes women cover their heads.8
No more chemo side effects especially the damage it is wreaking on the inside of my nose.
I was going to do a list of happy things I won’t be able to do again but I don’t want to cry – I’ve been doing entirely enough of that already. Right now, I have little things to look forward to like my 3 week break from chemo coming up and getting my hand surgery, finally. No one really anticipates that this is the course their life is going to take. I was going to be a life coach.
Just as an aside. I have calculated that I had 6 people in my life who could have taken on the role of parent: my adoptive parents, my step parent, and not one of them ever stepped up and did the job of the parent. The best advice I ever got was from my step-mother Alice, she said: If you are constipated don’t push because you will get hemorrhoids. She also told me to visit my father before noon if I wanted him mostly sober. ↩︎
I have been living with chronic pain for about eight years. Over that time, I have been given small amounts of morphine, regularly, to manage my pain. My pain is a direct result of my ulcerative colitis. It is functional pain – if my bowel moves, I get pain.1 I also get cramping when something I have eaten has disagreed with my bowel. It can sometimes take 2 weeks to resolve this kind of pain – quite often, this is the worst pain I have.2 Regardless of the morphine I do get, I almost always spend a good portion of every 24 hours in some degree of pain.
In October of 2016 we abruptly lost our family doctor. She had cancer and could no longer work. This meant that we had to find a new doctor just as the opioid crisis was hitting hard. This meant that many doctors, fearing repercussions from their college, were no longer prescribing opiates to patients – even their long term ones. How was I going to find a doctor that would take me on3 and who would prescribe morphine. Luckily, I was able to find a doctor who would prescribe morphine but she certainly leaves a lot to be desired in other areas.
As doctors have pulled back from prescribing opiates, many patients, particularly Eastern and Atlantic Canada, are struggling. Even though a large study, like one in Ontario that included 39,140 people showed that less than one-half of one percent of medical pain patients became addicts.4. The drugs that are killing people on the street are not the opiates being prescribed to pain patients. Instead it is illicit fentanyl and heroin cut with fentanyl coming in the mail primarily from China.5 Even though this is the case, the government has instead chosen to crack down on those of us in legitimate pain. Now, if you want to get opiates you have to sign a contract that outlines many conditions to receive ongoing opiate prescriptions.6 One of the most problematic clauses is that you can’t ask for refills early, for any reason. I have never needed an early refill. I have become very good at rationing the little I get to make sure I make it through the month even when this has meant spending a fair bit of time in pain. Now that I have cancer, and chemo is messing with my bowel, I am no longer able to manage on the morphine I am being prescribed. Pain is keeping me awake at night or waking me up from sleep. Pain has to be quite bad to wake you up. The nights used to be easy time, now they are my worst. I was able to get something additional to help from my doctor. But it wasn’t much.7 I have a referral to get into the pain specialists at the BC Cancer Agency. I am hoping that is going to help.
I certainly hope that the government and the provincial colleges of physicians and surgeons figure this out sooner rather than later. As some legitimate pain patients are turning to the street and dying of overdoses as they have no way of knowing the dose they are taking is correct. After all, it is the role of the medical system to help patients not send them to the streets seeking illegal drugs instead of having them prescribed by a doctor with appropriate oversight.
I would estimate that 1 out of 25 bowel movements does not cause pain. ↩︎
I am looking at you Mary’s crackers. But it can be other things – even things I have eaten before. ↩︎
The pain and fatigue are wearing me down. I got something stronger from my doctor but the pharmacist said it’s not going to do what I need it do. I have been having to fall asleep in pain for regularly. If I take enough pain meds then I get itchy, can’t pee and can’t sleep. Let’s hope that tonight’s different.
I have to say that the worst thing about cancer and chemo is the fatigue. I have dealt with fatigue from ulcerative colitis for 13 years. Basically, I have needed a minimum of 10 hours sleep a night to function. If I had to pull some extra energy out of the tank I could for short bursts of time. The difference with chemo is that I can’t. I don’t have the extra energy.
The fatigue with chemo is unbearable at times. Every single thing I do costs me energy. If I stand in front of the fridge and have to move several things before I can get to the thing I need, I almost cry. It sounds ridiculous1 but that’s the reality. The favourite part of my day used to be my shower. Now, it takes so much energy I contemplate not doing it bu tI do it anyway. So now, most days, I need 12 hours of sleep and a 2 hour nap. Which means I am awake for the grand total of 10 hours a day. That’s not enough time to get much done. It’s even worse if I have appointments – I come home absolutely spent. It’s just really fucking hard.
One of the thing about serious disease is that it’s shrouded in mystery. Only those who have gone through it really understand or know what it feels like. I know that I have always been curious1 about what people go through when they are dealing with as they make they complete their journey. How much does it hurt? What does it feel like to get chemo? What are some of the side effects etc.
So, I would like to give you all the opportunity to ask me anything you want. I promise to give you the unvarnished truth. I promise this will not be a pink butterfly and roses post or series of posts depending on how many questions I receive. I think this kind of thing is particularly important as we move into fall and October – Breast Cancer awareness month. What a lot of people don’t know is that the resources raised during that month go to people who are curable. Once your cancer has metastasized there is not much there for you except palliative care.
If I don’t know the answer, I will do my best to find it out for you.
You can submit your questions through these channels:
Comment on the blog
Comment on Facebook
Email me at firstname.lastname@example.org
I would love for this to become a 2-way conversation. I look forward to your questions. Bring on the TMI! No question is to personal2 or at least I think not anyway.
Apologies for the long hiatus. My friend Joe was here visiting from Saturday until Monday and when time is limited you do not take any of your good time and devote it to blogging, especially when it’s so short.
I have known Joe for almost 30 years1. We met as first-year undergrads at the University of Calgary taking a Canadian Sociology course.2 We met discussing the results of our most recent exam.3 We were taking similar courses so we had lots to talk about. And from there, our friendship grew. Through the ups and downs, health issues/scares, partners, weddings, problem solving, deeply intimate conversations and many a chicken dinner. And dogs. How could we forget dogs. Joe has finally crossed over to the dog side of life. I can’t wait to meet Suzie and Nanuk and see Sheldon in October.
I love you Joe.
And now pictures of all of us Deb, Joe, Angelina and me:
Incidentally, throughout my 2 degrees in history, I was never asked to cough up a date that something happened. Historians can barely be bothered with dates – spans of times, conceptual ideas that take up time i.e. something like the Renaissance. But actual dates – never going to happen. Most historians, at one point or another, will look wistfully upward and say “now was that 1553 or 1535, oh well, it doesn’t really matter.” Historians are conceptual, big picture thinkers who can’t be bothered with dates. Political scientists like dates – like when big things happen – when the constitution was patriated etc. I used to know that once upon a time… ↩︎