I talked to the radiology oncologist today. Answered umpteen questions about my health history and medications. Apparently I have COPD. Not that I know of and no I’m not on a puffer for it. I’m not short of breath either.

He gave me an option of 5 days or 1. It may not last as long, it’s less durable than 5 days, but I’m opting for 1. He didn’t have to go over the side effects, been there, done that. He’s also going to do my ankle. Maybe I’ll be able to walk again, even if it’s only a few steps.

He wants me to take the steroids that I still have an hour before my appointment. I’m not looking forward to that.

I’m now waiting for the booking clerk to call me with a date.

I got in touch with Victoria today. My Radiology Oncologist is away. Her replacement is calling me Thursday and I’ll find out if radiation is possible for my back and when it’ll happen.

I have so much anxiety around this that I’m going to have to overcome. Not only does the trip itself cause me a lot of anxiety because I truly hate being a passenger, but it’s also going to, at the very least make me physically uncomfortable, but could put me over the edge pain-wise. I think I’d be stupid not to give myself one more chance at having an extra couple of months more time.

Talked to both my Home Care nurse and my medical oncologist from Victoria today.

I knew Home Care would call because of my emergency visits. She read the x-ray report to me about my ankle. She wasn’t clear on it’s meaning but it did read along the lines of “…in keeping with the bony lesions, a fracture….” She suggested I put the tensor bandage back on.

My MO read it too and confirmed that there is a fracture. Soooo nothing is broken but there is a fracture that the ER doctor missed. Maybe a radiologist hadn’t read it yet and the dr couldn’t see what they can?

He’s also pushing for radiation. Seems the concern is compression of my spine by the tumours, causing paralysis in my lower body.

What to do….

Been having trouble with my ears. Nothing new there, I’ve had problems with them as far back as I can remember. Yesterday I kept getting dizzy so my awesome neighbour took me to emergency. Got there at 4pm. Turns out I have water behind my eardrum. Apparently only time will heal it. We left at about 8:10pm. 4 hours is normal for going to emergency. By 8:30pm we were back in emergency waiting to get my tumour filled ankle x-rayed.

Their sidewalks and roads have rock salt on them. My knee scooter doesn’t like rock salt. Not even 10 feet from the doors, my knee scooter twisted and fell over with me on it. Did you know if you have a mishap outside the building you have to call 911? We didn’t. Luckily I had a couple of compassionate nurses who helped me off the ground and into the building. Luckily it wasn’t busy by then and they fast tracked my x-rays. We were out by 9:30ish.

Nothing is broken but I’m in a world of hurt. Took a pain pill last night and it barely worked.

The palliative dr called. As expected, there’s progression of bone mets. The first thing she said was she can’t imagine how much pain I’m in. I laughed cause I’m really not. Either I tolerate it really well or I’m just used to it. Or I’m just an anomaly of nature. I do get the odd flair up where I need to take a pain pill but it isn’t that often.

So, the tumours in my ribs are growing (4 on the left, 1 on the right). One of them is pushing into the sack around my left lung. The tumours in my lower spine (5 of them) are growing which have the potential of compressing. This could cause paralysis.

No signs of tumours in any of my organs. This is odd because I should have it in my lungs. I’ve been a smoker for 40+ years. My brain is clear too.

She asked how I felt about radiation again. I don’t feel good about it. It’s truly an ordeal getting it both mentally and physically. Ill keep the option in mind but I don’t have weakness or numbness in my legs and arms. I’m not short of breath. I’m managing for now.

Had a CT this morning. As she always does, my neighbour took me. She was even able to get my knee scooter into the trunk rather than having to grab one of those awful wheelchairs from the hospital.

The contrast dye IV went in on the first try. This time they scanned my trunk like usual, but they also scanned my brain.

Scanxiety wasn’t as bad this time except not being able to sleep last night. Now I get to wait for the results. Hopefully I’ll get a phone call early next week. I won’t be able to see the results myself until next Thursday or Friday. And if the above doesn’t happen, I have a phone appointment with my MO on the 28th.

As anxious as I am to get results, the hope meter has changed for me. Instead of hoping for no activity, I now hope for small changes.

The palliative dr was here yesterday. My UTI’s are now considered chronic and she’s left me another sample bottle. Her and the accompanying nurse filled out a MOST(Medical Orders for Scope of Treatment) that will be kept in a folder on my fridge along with being attached to my health records. I’m an M3. No CPR, no intubation, no dialysis. If I have something they can fix, like pneumonia, it’ll get fixed.

She was in disbelief that I hadn’t had my 2nd interview for MAID, nor a phone call from them. She said she was meeting the lead dr today, and would do the interview with me over the phone with the other dr there.

She called me right on time today and we did the interview. All I have to do now is text the MAID dr if/when I want to do it.

I feel calmer now that it’s done. Knowing it’s there if I need it, strangely, gives me a reason to hang in there longer. The anxiety of being in pain without end is gone.

Home care was here today and took my urine sample to the lab. I think this is UTI number 4 in the past year. I’m so over getting them.

No news on the status of my MAID application except that the doc that did the first interview assumed I’d also had the second one. Nope, I haven’t. I’m not surprised this is taking longer than it should. Not much in my life has been “one and done”.

I’ve been having internal conversations with my cancer ever day. Sometimes it’s to tell it to speed up and get this over with, sometimes it’s to slow down. Being housebound doesn’t help. I’m dreading the day I’ll need Home Care visiting me every day. I’m tired. Just tired. I wake up tired. Most days I have a nap. I’m usually ready to go back to sleep by 8pm but stay up till 10pm to keep my pills routine. Tired.

Lots of phone calls and visits this week.

My GP called. Palliative Benefits needed his signature. He sounded surprised that I am already at that point. We talked about MAID. He says he’ll sign anything that crosses his desk for me.

My palliative dr called. She’s increased my antidepressants. I haven’t yet, but I will. Promise. She was also having a face to face with the MAID dr and was going to find out what happening with my application. It seems to be taking longer than it should. She wants to do a home visit in a day or two.

The occupational therapist was here. Thanks to the Red Cross and my neighbour, I now have a raised toilet seat (my cat normally drinks from it but I’ve put a bowl of water beside his food in case he can’t figure it out) and a huge bench in my tub. She says that everything else is pretty much set up optimally for me. I’m mainly using the top 2 rows of my fridge and the pots I usually use are on the stove. I am also using the knee scooter to get around and a cane when I’m off it. Can’t walk without help anymore.

Home Care was here with a “Palliative Care At Home” folder, which includes info on hospice, benefits I’m entitled to, a green plastic folder goes on the fridge that I’m to put all my pertinent info in, MOST (Medical Orders for Scope of Treatment), medication list, etc. My sister has Power of Medical over me so don’t really need a MOST.

My car is gone. For good this time.

How do I feel about all this? Scared, dejected, angry. My world is getting smaller.

I haven’t driven since about the end of May. Occasionally I’d let my sister take my car home but I’ve always wanted it back. Rarely have I let anyone borrow it. Today I let my niece’s boyfriend take it for a weekend away with my niece. Next week I will be gifting my car to my sister. In good conscience, I’m not able to drive safely anymore. I can’t walk without a cane and each week my ankle gets worse. My neck hurts if I move my head fast and I can’t do a proper shoulder check.

Giving up my car hurts. Really hurts. It means giving up more control because this cancer is taking over. It’s taking over a lot faster then I’m prepared to accept right now.

Not long after my mom died, my sister said I wasn’t allowed to die for 2 years. Afterwards she said she wasn’t serious but that’s been my goal. I’ve gone downhill so quickly this year that it really troubled me that I might not make it but it looks like I will. Mom died 2 years ago the end of November.

My M.A.I.D. application hasn’t gone through yet either and I’m not sure why not. I’ll have to get the palliative dr to find out why the next time I speak to her.

Home Care is going to refer an Occupational Therapist to me. They’ll assess my home and me and make recommendations for changes if needed and find ways for me to function better. Even though moving around on my tumoured ankle is difficult, I’m really not ready to have someone come in and help me bathe, fix “heat and eat” meals and all that yet.

I’m not happy giving up control of what I have. I’m not ready to give up more. It just really sucks and I’m fighting depression, trying to remain level emotionally. I find myself just feeling numb most days.