Everyone who knows me, knows I am a techie. I am really good with computers, networks etc. Generally, I don’t even read directions.1 I am one of those people who can walk into a room where the computer doesn’t work and it fixes itself.2 I have no explanation. I understand computers and they understand me. Although, I have to confess I do not get Blockchain. I am not sure I ever will get Blockchain.3
I had put off doing this literally for years. I had lost all of my original network passwords and I have 3 airplay speakers4 that would also have to be setup. I finally got to the point late the week before last, with our $300 cable/phone/internet bill and got in touch. We decided to cut a bunch of channels, up the internet speed 5 and I got the bill down to $160 with $20 per month, for a year.
The Shaw tech6 game and he assured me that the modem would cover our entire house. Even though I have always needed a router extender. Of course, you know where there is going – it didn’t cover the whole house. I had no internet in bed.7 So, I went to London Drugs and bought a NetGear modem. I came home and started trying to set it up. Each time I tried to set it up, it required that I get in touch with Shaw to either bridge or unbridged the free rental modem router thing. I did this about 5 times all told.
I will freely admit that I should have read the directions. I am not one who likes to read directions and most of the time they are superfluous to me. Either I figure it out or I look it up online. After about 6 hours of playing with this fucking NetGear modem, I packed it up and back to London Drugs we went. This time, I did what I should have done and bought an Apple product. I got a Time Capsule for my router, which I will also use for Time Machine. I had it working in 15 minutes. No directions needed.
Now we are working on the Bang and Olufsen sound docks. They make a superior product but connecting them to a network is horrible. They could take some lessons from anyone. God even Microsoft could make it easier.
Geez – even God supposedly created the world in 7 days.
It once freaked out my evangelical christian step-sister when I told her the password for my mother’s computer and it worked. Apparently, she had tried 10 times and it hadn’t worked. She wanted to know what kind of sorcery I had used on her. ↩︎
I am beginning to think that age 53 is my outer limit for understanding complicated techie things. Or perhaps my enthusiasm for such things is waning. ↩︎
Sorry for the vague blogging that’s all I will give today.
I have also spent about 8 hours trying to get a new router going after the one that Shaw offered to rent for free didn’t cover the whole house in spite of their assurances to the contrary.
So after, buying a Netgear which is the worst router to set up I have ever dealt with. I took it back and got a 2tb Time Capsule. This has been much easier to set up for sure. It is all done and ready. It took about an hour.
I got my hair cut short as possible.
Which for all intents and purposes my body treats like prednisone. This is a very, very bad thing. ↩︎
I’ve been dealing with fatigue for years. My ulcerative colitis has certainly made sure that I am fatigued. Chemo fatigue, however, chemo fatigue is a whole different bear. I woke up tired enough today to go right back to bed. Forming a thought is extremely difficult, let along getting it out or completing a task.
I feel as though I am becoming increasingly unstable o my feet. I thought a an wold work, but I find it awkward to use. So, I think I will be getting a scooter. I want the one with the seat so at least I an sit when necessary.
And what the fuck is with this weather.It’s just not fair that I end up cancer. But to make me have it when the next week is going to be 30 degrees or warmer seems cruel to me.
I think I may have said this already but having cancer is a fucking full-time job:
Monday – hospital or bloodwork
Tuesday – meet with The Oncologist and get chemo
Wednesday – got my hair cut before it starts to fall out
Thursday – I needed to get a cane, although a walker maybe sooner as I am very unsteady on my feet.
Friday – I think I get to stay home. Then we start again.
It reminds me of the routine my step-father used to go through when he had leukaemia. All I can say is that I miss my mostly sedentary job.
I now have a Das Keyboard for the living rom so I an write in both my office and the living room. I think once you have a mechanical keyboard there is no going back. I tried not to buy one for the living room computer but now I have and I am very happy.
So, they sent me a dietician today. She was lovely. I have a really hard time with dieticians. This history dates back to my early days of ulcerative colitis or Crohn’s1 when a dietician told me to eat whole grains, raw fruits and vegetables and lots of fibre. All of these food items are contraindicated in IBD2 I got quite annoyed and told her that I would not be eating those foods unless I wanted to spent lots of time in the hospital. The other about IBD patients is that everyone can tolerate different things. I can eat meat for example, others cannot. I can tolerate spice with no issue. I can’t eat nuts or whole grains or dairy. My main triggers are shortbread cookies3 I tried to be nice to the young, quite naive dietician. She knows that cancer patients need good nutrition so I guess that’s a start.
I have taken Immodium that had already started a bit. I am not up for that. I am exhausted and going to bed.
They can’t seem to make up their minds – with either have have ulcerative colitis or Crohn’s. I think I will call it Crolitis. ↩︎
IBD stands for inflammatory Bowel Disease and includes both Crohn’s and ulcerative colitis. ↩︎
And there is a theme here – anything with white sugar, white flower and baked or fried will do me in. So Deb’s shortbread cookies, scones, cookies, muffins, and really any baked goods. ↩︎
I feel like I am living in a haze of brain fog right now. I recognize this fog and the difficulty of moving my limbs where I want them to go. As I try to walk, my body has other ideas as I lean, off balance, against a wall. At least I don’t fall. Today I am grateful for small blessings.
I cannot remember the last time I had normal hemoglobin.1 Most of the time I hover around 105 but lately it’s been down in the 90s. Adding in 2 doses of chemo and I am sure I am in the 80s. The other problem with low hemoglobin is that the lower the hemoglobin goes it takes one’s appetite with it. At least that’s been my experience of living with 10 years of anemia of chronic disease.
At this point, I feel like I am far too tired to have cancer. The sheer number of appointments is enough to kill anyone – it’s like a full time job. The last couple of years of working at home, I could go weeks without going out which was probably not the healthiest but I sure did enjoy it. I am an introvert and we well in our own individual habitats. And to add insult to injury, I get cancer in the summer when I most hate to be outside. I feel like it’s all one big fucking conspiracy. Oh and it’s going to kill me. Good times.
Here’s a picture of me in my natural habitat. Sawyer is always cold so my thighs offer the perfect place to curl up and stay warm. God, my knee still looks horrible.
I have been dealing with a number of side effects lately. After reviewing the side effects for Paclitaxel, the chemo drug I am on, it seems that the problems are likely coming from the prednisone. Me and prednisone have a long and storied history.1 They give it with the Paclitaxel in case of an allergic reaction. I have had the chemo twice now and I think I am ok with it. I am having far more problems with the prednisone than the chemo by the looks of things.
Yesterday was extremely emotional. To me the whole thing was completely unnecessary but I was not in the driver’s seat. I seem to go from crying to hysterics in a matter of seconds and it exhausts me. At least I got 12 hours of sleep last night.
Even though the prednisone was a pain in the ass this week, I got lots of stuff done which was good. Lots of administrative stuff was completed which should make things easier going forward. Not much else to add for today.
I have been getting some of my medical reports from the various specialists to see what I am up against here. I have find it interesting how they talk about and reference the human body.
In my case it is often in the negative as in: “Due to the patient’s body habits it was difficult to…” “Or the port may flip or come out due to the patient’s body habitus.” Couldn’t they just say the patient is obese or large or something else?
It just seems such an odd choice of words when you are dealing with people and their bodies. It complete depersonalizes people. I think this is a problem for the medical community.
I guess it’s good that I have a ‘large body habitués’ maybe I will last longer.
When I last saw The Oncologist™, he was his usual affable self1. He asked about side effects then seemed quite unconcerned about the gastro ones and suggested tums for heart burn. We weren’t talking about a little case of heart burn here. I was having acid reflux which is actually quite difficult for me to pull off given that I have vertically banded gastroplasty.2 So, we went on in our usual way as he asked about numbness or tingling in the extremities and I had none to report. He was not particularly interested in anything else I had to say.
I decided to broach the question as to the stage of my cancer as it was some information I required to be added in to a Facebook group for women with metastatic breast cancer. I expected him to tell me that he couldn’t tell me that yet. But instead he blithely said: four.3 I get that The Oncologist™ is a super duper well-learned, trying to be kind of cool dude but man can’t you summon up a little human compassion?
I have copies of his reports to my doctor which I have not read yet. It will be interesting to see what he says. I really don’t like him at all. However, I do like that I can go to a hospital close to home, where the clinic is nice and they give you a staff parking pass so you only have to pay $3.50 for parking. I shall try to find a redeeming quality in The Oncologist™.
In other news, I got an Impark ticket cancelled by being nice and lying a little. We didn’t pay for enough time at Royal Columbian Hospital when I had my port done last Friday. In all fairness, they did make me wait a long time to go home! The parking prices at hospitals is horrible. I don’t know how those without the means to pay handle it. Today, I am grateful I have the means.
As in, not.
Basically, my stomach has been made into 2 pieces a small piece at the top with a tube or banded channel for the food to pass through. In order for me to get acid reflux it actually has to go up through that tube.
Empathy Translator here: Given the clinical picture with a triple negative tumour, inflammatory breast cancer and metastases in your lungs I would have to say stage 4.