Surgery was postponed

Yesterday at 7:00 am, I got the call. “Good news you can eat breakfast, bad news your surgery has been postponed”. He did not tell me indefinitely, but alas that is what he meant.

The nurse who called to inform me of this fact did imply that it had gone up the chain of command, but I wasn’t given any contact of people to follow up with and I already have decimated trust that anything is happening behind the scenes.

Luckily, I already had an appointment with my nurse practitioner that day. I brought my mom along with me to attempt to destroy my mother’s delusion that her involvement would actually lead to any different or more urgent sort of treatment.

The nurse practitioner did say something reasonable. She wondered why BC Cancer had not referred me to surgical oncology. I don’t know these terms, right?. I don’t know the proper chain of command and I’m entirely reliant on the medical professionals to do their job and coordinate on my behalf. I have no reason to believe that this is happening based on this profound delay of over a month since I discovered the initial pea sized lump starting to grow where my scar is on my neck. Again, it’s grown to the size of a large grape now.

Yesterday, I should have got some call to say what was happening. I thought maybe by this morning. I have now called BC Cancer and asked how it is to be escalated. I’m clearly waiting on people who do not care or have too high of case loads to give me adequate care and get this surgery on the books.

The surgeon yesterday was going to do an excisional biopsy. Watch them merely give me some inconclusive needle point bullshit now.

Despite the bad news and weak empathy offered by my nurse practitioner, I was able to convince my mom to go with me to Grand Forks and see this Lavender Labyrinth I’d seen signs for on my last drive to Kelowna.

I wanted to make the best of the day, but unfortunately I’ve been sent into major helplessness and panic because I have exhausted all channels of finding someone who has the power to make something happen.

Lavender Acres offered some beautiful scenery. We were taken to this shaded gazebo with two purple chairs to do the meditative walk through the fields. We were told to set our intention before walking barefoot through the maze of lavender, which was only 2 feet high at most (my mom still got lost in it, because she kept spinning around 360 degrees and taking pictures and was not in it for the meditative purpose). I set the intention to figure out how I can be calm about everything that is happening to me.

As I walked through, I could smell the fragrant fresh flowers and see bees and yellow butterflies floating around in sharp contrast to the purple hue. Midway through, I got a call from someone who’d found my work contact information and is attempting to sell me something – a vendor with a bad sense of who has the ability to make decisions at the rather large employer I work for. I informed him of my diagnosis and told him I’m not someone who can help him, then I carried on with my lavender walk.

The feeling of crisp drying grass under the beating desert sun did invigorate my spirit. I did feel more connected to the earth as I walked onwards for 5 more minutes to finish the maze in the hot summer sun. By the end, I realized I’ve been too calm. It’s time to be outwardly pissed. It’s time to start complaining, because I’m being left to die. I’m being deprioritized because of a potentially erroneous PET scan that was clear. I have no reason to believe that scan is actually mine because I didn’t get the results and I haven’t seen them.

Inside the Lavender Acres shop, I bought some Lavender sugar scrub cubes and some lavender infused maple syrup. I used one of the sugar cubes in a bath yesterday evening. I went to bed just after the sunset around 9:30 and slept pretty well despite the stressful day.

When we got back to my mother’s in Rossland, I was still upset. Ultimately inconsolable. She doesn’t know what to do. The nurse practitioner doesn’t know what to do. No one can tell me what I can do to actually get this operation on the books and move towards progress with my treatment plan.

Rage, rage against the dying of the light. That’s what I have to do. So I re-opened my complaint with the Provincial Health Services Authority. BC Cancer is obviously in the wrong and leaving an otherwise healthy 41 year old woman to die. Then I reached out to Global Okanagan with the same story. This is a travesty. There’s got to be some educational angle for public interest because I’m either doing something wrong or when you hear the words metastatic melanoma it’s a total death sentence.

I got no reply on either of these fronts as of this morning, so I reached out to BC Cancer and asked who I can complain to. I told them my oncologist and team are not coordinating properly with my family practice. I told them I’m being ignored and left to die. The receptionist said she found someone I could talk to and forwarded me onwards by email. I should apparently expect their phone call.

When I started this blog, I wanted it to be positive. A journey to find meaning despite sad & stressful circumstances. An exploration of vitality and appreciation for the little things that make life worth living. But alas, I’m not able to put the thing growing on my neck out of my mind for even a moment.

Tonight is my laundry night at my condo. I’m going to do laundry and hopefully find something to do with my Wednesday that is outdoors and will make me feel some appreciation for the beauty where I live. Then, on Thursday, I have an appointment with a skin technologist at Renew Medispa, and I will hopefully find out what these weird bumps on my forehead are and told what can be done about them. They age me more than any wrinkles.

Now that I’m pretty sure I’m at high risk of being a corpse in a few years time, due to medical ignorance and delay and deprioritization, I have renewed vigor to at least not be an ugly corpse. Also, much like when I started this blog, I do think dying with nothing in my savings and investment accounts is ideal.

———-update———

I just had a call with a nurse out of BC Cancer and she implied they’d be talking about me today. Still, I know nothing is going to happen. She couldn’t give me anything definitive to rely on or bolster my trust that anyone cares.

I don’t know where I should go, but I doubt I’ll hear from anyone this week. Where would you go on vacation if you were me right now?