My neck has still been sore. Not my spine, but the tendon up the side. If I move wrong, I get a “zing” up my neck and into my scull. I still don’t have full range of motion either. I also have “floaters” in front of one eye that showed up yesterday.

Finally had a visit from my palliative dr. She has confirmed that the tendon is messed up, and a little swollen and has suggested I use Voltaren. She also suggested I see my eye dr. She has also put me on anti-depressants. Probably about time I was on those. Between lack of sleep, no more treatment left for me to try and all this pain, I am depressed.

I just so want some normal time. No pain, no worries.

It’s been 2 weeks since I had radiation and I’m not as far along as I’d hoped. My pain has leveled off to about a 2 but it does spike if I’m not careful how I move. I was hoping to be pain free with full range of motion at this point. It’s depressing to think this is it.

To make it worse, I haven’t heard from my care team in over a week. Maybe that’s a good thing. Maybe they’re expecting better results from the radiation with a little more time.

All I really know is that today, I’m just depressed.

I’m not ready to give up or give in and can only hope that given more time, I get a little better.

Today is my 60th birthday.

Truthfully, I didn’t think I would make it here. Knowing the stats for metastatic made it harder to think I’d still be here. I am. And I beat the stats even if only by a little.

This week has been good for me mentally. Lots going on, doing fun things and good people visits.

The only downside is this stupid fatigue. It’s doing me in and I’m not sure how to get past it. I’ve stopped all the drugs, and my neck pain continues to lessen. Hopefully in the next few days, my energy level will get better. my range of motion is still limited but I can live with that. I’ve been finally getting some normal sleep too which should help.

Here’s to 1 more year.

I had an incredible day yesterday.

My therapist went out of her way to meet me for lunch and just visit with me. I have been seeing her virtually since Covid and my move here. I was blown away by the kindness and the effort. Not very often someone comes into your life who, during the process of offering professionalism, also adds a personal touch.

It will be a memory I keep close.

and I’m awake. Been awake since 4am which is far better than it’s been. Since all this started with my neck, I haven’t been able to sleep more than an hour or 2 at a time. Last night I slept for about 6 hours.

I feel better. Far from normal, but at least once removed from the debilitating fatigue. I took a sleeping pill last night and the night before instead of pain pills. I find the bargaining choices I make regarding what my body needs when I’m paying attention to it, help with my recovery from these things. The dr want to assess me this week to see if I can come off the other drugs because of the side effects but I know I’m good to go.

I’m still fatigued but not even close to where I was. I still don’t have full range of motion yet, but I can live with that. My neck still hurts a little but I can live with that too. I’ve gone from not being able to lay down 2 weeks ago to sleeping for 6 hours.

Progress.

Note to self: don’t post entries when drugged up

This experience has been the most excruciating and terrifying to date for me. The trip to Victoria would not have been better if done by hospital transport, I would have been strapped down and it would have been more painful. Driving was the right move but geez. We should have stopped more or something.

I was in so much pain by my CT appointment that even knowing I was getting painkillers and anti nausea meds by needle didn’t bother me. I just needed the pain gone. Then I was in zombie land.

They explain themselves so quickly that before you are aware, they’ve placed this mouldable plastic over your head that you don’t have time to think as it slowly tightens and hardens. Then they cut out the eyes and mouth.

Although they tell you the radiation will only take 5 minutes, it felt like far longer because you’re strapped in and can’t move. At about the 4 minute mark I started to panic with none of my coping mechanisms working. I could not even begin to imagine having that kind of treatment for 20 or 30 sessions, but then we do what we have to…

The trip home was better because we stopped more and I felt better but was still far too drugged up. 2 days ago we started weaning me off the painkillers and steroids so I can think and function again. For a while even stringing a sentence together was a chore. Everything that need concentration was out.

I’m still in a bit of pain and don’t have full range of motion yet, but more may still come. I’ve had a flare up of pain but it’s manageable.I’m just glad that’s all over now. Going from a pain scale of 12 to 3 or 4 is liveable for me.

The trip to Victoria did not go as expected. It was worse. By the time of my RO appointment Tuesday I was a mess. Vibrating, couldn’t stay awake, couldn’t sleep and couldn’t lie down. They pumped me full of painkillers and anti nausea meds so they could get me on the CT table.

They made me a mask so my head wouldn’t move.

Trip home was better. Will write more later when I’m off the drugs and more coherent.

To all of you. To the best sister in the world who always seems to manage to just be there for me.

To the other family members who reach out and just talk to me and encourage me with kindness.

To my niece who picks uP after me with a smile on her face.

To the aunt who is making her 3rd trip with me to Victoria.

To my neighbours who go out of there way to help me, especially to the one who goes out of her way to buy this drama queen the little things.

To the counsellor who grounds me in the best way possible.

To my friends who are just there for me.

To my virtual acquaintances for their encouragement even though they ride the same boat as me.

This has been a rough week and I feel more broken than I ever have. I could not and would not want to go through this without you all. Love you.

When I was in emergency, there was a little girl there, about 8 or 9, who couldn’t feel her legs from her knees down. She was in the cubicle across from me and when they told her they’d have to draw blood, she got really upset. I showed her where I’d had blood drawn from the back of my had and I still had an IV line in. Keep in mind that I have a needle phobia. I told her if she just doesn’t watch, it won’t hurt.

A little while later she had her mom open the curtain so she could see me and showed me where she had the blood draw and said, while they were doing it she thought of me and it didn’t hurt. AND her cotton on top of it was in the shape of a heart.

I almost cried. I was so glad I could make someone else feel better when I wasn’t.