Venting

This is a venting post – so be warned. I’m just grumpy and want to wha-wha-wah it all out of myself. Maybe that will help me feel more in control again.

So last week I went for a head MRI – brain and eyes to be specific. I get to the hospital to get my port accessed, which took way longer than I wish it did, then ran over to the MRI scan place – where they said I was on the cusp of lateness, and they may not be able to fit me in.

I say: I’m ready now! Port accessed and ready!

And I run into the change room and change, and am by the MRI room in about a minute in the scrubs they give you. I wait for someone to come over, see I’m all set and bring me in.

But I just keep sitting there. And then I hear this technician lady talking into the phone . . . “so she doesn’t need it?” (and yada yada yada, I didn’t memorize each word – but she was inquiring after someone.)

About five minutes later, maybe ten, she comes out to me and tells me the MRI has been cancelled.

“But I have an consultation next week with two radiation specialists to discuss the results of this MRI.”

“The report says it should be in June. I can’t do anything.”

“But I’m here now. My appointment is for now.”

“It should be in June,” she replies.

“But I’m meeting the doctors next week to discuss the cancer in my head – the results of this scan. What are we going to talk about if there’s no test done?!” I’m getting pissed off now.

“There’s nothing I can do. That’s what the chart says. You’ll have to come back in June. Or go speak to the doctor now and get them to call me.”

“And I might get in today?”

“I don’t know.”

AUGHGHGHGHGHGH. AUUUGH!

Okay. We go to the cancer center at the hospital and they are very helpful. Within minutes the receptionist has cooled my lava-like fury and is investigating the situation. A nurse is looking into it for me, I just need to wait.

The nurse comes out and explains the scan really should be in June. It was booked too early, and therefore moving it to June is okay. It’s normal procedure is to wait 3 months post head radiation before doing the follow up MRI. Everything is okay. The doctor did this purposefully.

“But I’m meeting with the doctors next week, supposedly to discuss the scan.”

“It’s mute now, I’ll cancel the appointment and request they reschedule for after the MRI,” assures the nurse.

I calm down, think ‘fuck it’, and go to Bridgehead (coffee shop) for an almond milk decaf latte. It was a very stressful morning.

This week I get a notification phone call about my appointment with the radiation doctors on Wednesday. I call them back (responding to the message) and say:

“Can you rebook this for after June 10th? The scan was postponed”

To which they say

“There’s a note here for this specific date.”

“To review a scan that didn’t happen yet.”

“You’ll need to call the doctor’s nurse and have them sort it out.”

OR, BOOKING OFFICE, YOU COULD JUST REBOOK! I say in my head. But not out loud.

Then I call the nurse. She hasn’t called me back yet. Tomorrow is Tuesday, then its Wednesday. I’ll call again tomorrow. I know my stupid appointment stuff isn’t her top priority – but my continual sense of displacement, of misinformation, or missed connections between departments . . .

. . . it’s getting to me, man.

Who has the holistic picture in all of this? Me, just me, only me – because I’m at every appointment, I’m at every scan, I’m at every cancellation, I get every phone call, I meet every doctor, I hear their ruminations.

Who is at the center of the fucking tornado? ME.

Who should be held as an expert in her care? ME.

Who is given the very least amount of credit when it comes to rebooking, decision making for the logistical details, having results sent between departments, getting copies of the reports – me.

lower case me.

I know everyone is covering their own butts. I know. And I know it’s a huge monster of a system, and the fragmentations are a necessary part of so many working arms (wonderful arms, caring arms, capable arms) trying to help in different ways. I know it’s all so hard to manage.

But I also know I AM one of the experts in all of this – yet far too often I’m made to feel helpless and victim-like in my lack of control.

One other thing. . .

The doctors have nurses who are assigned to them. That’s great. But I remember in England, I had a nurse assigned to me. Someone who didn’t actually work for the doctor, but instead worked with the patient, her whole job was to advocate on my behalf – and whenever I had a question, I could pick up the phone and they would be all over making things easier. If I was in the hospital, I could drop by their office and ask a question.

There are times in health care when I know my story best. And in those moments above all others, I’d like to be given the credit I deserve.

There are times in health care when I am the weaker one, the ‘victim’ of a hard round of chemo, barely able to advocate for myself… and in those moments, I wish I had my breast cancer nurse in England again, someone who I know puts my schedule, my stress, my issues first.

Lately I feel lost in a big system of notifications, notes and dis-empowerment.

This is a time when I’m frustrated with my health care system. It’s not an everyday experience, and it doesn’t mean I’m ungrateful . . . but there is something very important that is lacking. And having to jump these ropes of permissions and contradictions leave me just plain mad.

I’m mad.

Not upset or sad: mad. I guess, ultimately, it is that feeling that makes me want to get things done. To make more phone calls. Leave more messages. Become more annoying.

So look at this. . .

After all that venting, I’m feeling empowered.

Huh, maybe the system does work. . .

BAH!

Distortion

As I am nearing this 5th cycle of chemotherapy, things are definitely becoming more challenging. And one really striking oddity is my general perception of stuff. Stuff like the way the world feels. If that isn’t vague enough, I mean my brain space. I’m spacey.

Maybe it’s from the full head radiation (very likely), but also from the cancer in my eyes, things are so very spacey lately. Just last week I had a temperature, and during that time it was quite hard to figure out depth – things were further or nearer or just plain incomprehensible. I found myself clinging to the wall as I walked, willing myself to figure out how to walk straight again. How to make my head stop spinning. It did stop spinning as my temperature went slowly back to normal, but that lasted several days and I still get the wobbles when I walk.

So I was well confused this week when I woke up in the middle of the night whacked out of my head. Like so gone. For the very first time in my life.

You see it’s been hard to eat. I just don’t really want to eat anything. And so I lose weight. Plus I was becoming rather nauseous with a bit of upchucking, so losing more weight. Anyhow, in an attempt to deal with this, I am – or was – trying a little bit of a special ‘medical herbal’ oil, if you know what I mean. I’m not down with this typically; like my entire life I’m all noooooo thanks. But somehow when you have cancer that could kill you if you don’t beat it back, you become willing to try a bit more.

So I was taking the tiniest bit of this stuff, just to see if it would help me eat and not get sick. I didn’t feel anything, to be honest. That was fine. But then I was told – take more, you should feel something. So I was like, fine. And I took more. Still, I felt nothing . . .

Until about 11:30 at night, when I woke up after rolling over, and was like

WHAT THE FUDGE?!

I thought my head was a giant gingerbread man – big ,flat, circular, and ginger, I guess. (with icing eyes) And I wasn’t sure if I was stuck in a dream, except I was pretty sure it was real as I was talking with Zsolt. AND I wasn’t sure if my distortion had returned in full hurricane force, and that’s why everything felt crazy.

It was a bit of a tip off that just the sight of my husband was tripping me out. I literally could not bring myself to look straight at him. It was too crazy.

It was not fun. But, I was interesting. And it became hilarious when I turned on my phone.

Ever heard of Snapchat? I do this sometimes and send videos or pictures to others during the day. Or night, in the case of my 11:30 surprise.

So I opened Snapchat to give some people hell. Except I can’t! I can’t do it – My angry words dissipate into the air and are replaced by random thoughts about flowers, and then bursts of laughter. I try again! “You did this to……HAHAHA!” And that is all I’ve got before the snap timer runs out.

Then I get my husband to take my temperature, because maybe I’m having a fever again – so in goes the electronic themerometer – and I watch the numbers crawl upward and whip it out at 36.2 saying that is a great temperature. Not my temperature, because it wasn’t done calculating, but a great one nevertheless.

And I just laugh more. And feel terrible. I felt both terrible and hilarious at once, it that makes any sense. Mostly terrible, to be honest.

And I remember that I could not get enough water. I drank about 3 cups in a row. . .  and then felt really, really full – except the fullness was in competition with thirst. And that full feeling seemed very far away. As did the washroom . . .

Eventually we decided it might just be best to sleep. So we turned off the lights, and I sang “I can show you the world” from Aladin to myself in an attempt to fly.

Wow, so I’ll not be doing that again. Seriously, if I want the world to go sideways I’ll just run a temperature and get more radiation.

But I can see the laughter appeal. Laughing is such a special thing. Lately I’m quite stuck between neither laughing nor crying, though wishing I could just let it go and cry like a baby or laugh like an idiot. There are so many feelings I am having, from hope to desperation to fatigue to relief to trepidation . ..  so many, and not enough opportunities where my body actually finds the outlet to release things.

So the good thing is that I laughed.

And hopefully in time this distortion will settle down. I don’t mean the herbs, I mean my brain. I hope it calms down soon so I can feel normal. Normal is a really nice feeling. I like normal.

The end.

Map of Naps

I’m going to try going to work this week. Not going but working. ‘go’ in a virtual sense. Also going to find out the new plan on tackling the distortion in my eyes, and get results on other things. Bah! I handle none of this with grace. Rather, I handle it through pajama pants and hooded sweatshirts.

It will be quite nice to start working! There are a few things on my mind about how my job is ticking along, and I’d really like to follow them up. Now I can finally quench that curiosity. This makes me feel pretty stellar.

map of naps

The only thing is, my energy has a way of tanking quite rapidly. The body requires several small naps a day, otherwise I hit the ground like a . . . rock. Yes, like a rock.

We’ve been on and off staying with my parents (largely on) and they have been incredible in helping us get through the treatments. Incredible. My whole family has been so supportive, and it touches me quite a bit. While we had great support in England, there’s no one like family when it comes to actually asking for help. I’m far less embarrassed. And when it comes to my mom, she is a great advocate in helping me spell out exactly what is needed. 🙂

Part of the results will be to see how my skull and brain are doing. Of course I’m nervous. There is good reason to be nervous. But this is treatment time, so whatever is happening will hopefully be treated. Treated so we can move forward.

One really nice thing I’ve literally noticed only while typing the blog post is my use of double letters. There was a tumour developing between my skull and brain, and I think my typing was giving away a sign of this. Essentially it became quite difficult for me to type without using double letters. Every other sentence I’d use an incorrect double letter. Like this:

Actually Actually Acctually acctually acctually actually actually acctually actually

Like that.

That is me typing the word actually several times in a row without correcting myself. I cannot stop doing the double ‘c’.

However, despite the word ‘actually’ remaining a challenge. I did just type about 200 words in a row without any doubles. Not bad. Believe me, this is serious progress. Maybe it means things are improving in my  head. I hope so.

With results upcoming, I like to take the little signs of progress to heart. It’s important because it’s alsso (Damn!) quite terrifying.  This is not a small deal.

However, in the meanwhile as I go to work and appointments and results and such, there are always the naps. Sweet, wonderful naps.

The End.