My sister tries to stay with me for a day a week and I truly love her for it. Saturday I ask her if she could stay another day. I was in so much pain and constipated. She and my neighbour talk me into calling my care team.

I called them the next weekday and everything went into high speed. I’ve been subscribed Dexamethasone in a small dose to try and get my appetite back to what it should be. Apparently a yogurt a day isn’t enough.

I’m getting a hospital bed because I’m struggling to get in and out of mine. Too many pains that I’m struggling against.

I’m on a prescription for constipation and (lucky me) a suppository that worked the night I had it.

My sister thankfully, stayed way too long but I couldn’t have done any of this without her and my neighbour. It still feels like I’ve given up my power, but I’ve given it to the people I trust with it the most.

A couple of days ago my methadone was increased to .30mg. I felt nauseous that day. The next I felt a little better. My step niece who also cleans my house, brought me a coffee. I drank about half of it and threw up. The nausea went away but I still felt crappy. Having someone watch you throw up doesn’t help but I’m glad she was there to help me.

Today I feel better but have had to stay away from sweet things like the mints I eat because my mouth is always so dry and coke I continually drink. I’ve been drinking water. Usually I don’t like it, but I seem to now.

The increase is helping a bit more but my neck still hurts. We’re getting there slowly. I have brain fog which really sucks. It’s hard to have a conversation with someone when you can’t complete sentences because some words just don’t come out my mouth even though I can see them in my head.

The methadone is working. The sharp pains which I call “zingers” are gone for the most part. My neck pain is still an issue.

The Dr was here yesterday and was satisfied with how it’s working. She has increased my dosage to 0.02mg and I’ll see her again next week.

A friend visited me this week that lives quite a ways away from me. It realistically may be the last time I see him. I thought it would be a difficult visit but for me it wasn’t. I know it wasn’t easy for him.

Living with this sucks more some days than others.

For the past week or so the pain in my neck has increased to the point of occasionally having a blinding pain that shoots up the side of my neck to the top of my skull. Mostly it’s a sharp pain in the side of my neck. If I move wrong, it gets worse so I have to stay still for a minute or two for it to go away. The rest of the time the pain sits at about a 4 or 5, increasing to a 6 or 7 when I move wrong. I’ve increased my dose of Gabapentin and increased my pain meds but that’s not helping much. The pain is taking away my want for food so I’m forcing myself to eat something for a snack and dinner. Making dinner can increase the pain and is exhausting.

My palliative dr was here yesterday. She suggested Methadone. My neighbour (who was here too) and I had never heard of it being used for anything else besides drug addiction. Apparently it’s also used for pain relief.

I was supposed to be on pills but they’re on back order so I’m on the liquid. Because my dose is really tiny (0.01mg) one of the palliative nurses will be here every week to load the syringes for me to take orally. It’s supposed to be taken every 8 hours but it’ll be more like 7 or a 7 1/2.

I started taking it yesterday and am already feeling really drowsy from it. It’s supposed to take about 5 days to start working. I am really hoping it works. Not sure how long I can deal with this pain.

I haven’t written in a while. Seems all I write about is pain but then that’s what my life is about now.

A few days after the flare ups quit I cracked a rib. It’s in the middle of my back and after talking to my radiology oncologist, it’s an area where I have tumours. He also reminded me that it could take 6 to 8 weeks to heal. He wanted to know why I didn’t go to emergency. It would be a 4 hour wait, then another wait for the X-rays just for them to tell me there’s nothing they can do and my breathing is fine so no punctured lung. Not going to spend a painful day for that. He agreed.

I was just starting to get used to the pain from that and was pulling back off the pain meds and walking a few steps but it didn’t last. A week ago I pulled/bruised something in/by my front lower left ribs. Throw in the occasional neck and shoulder (not new pains, just low grade and not worth mentioning most of the time) and I’m back on pain meds 2 or 3 times a day.

Seems I just get close to being over one hurt and another happens. I’m tired of all the pain and really just want a break from it all. I really need a break from it all.

I’ve been doing good since I got home. I can walk a few steps now and my back isn’t continuously sore. I had 2 days with no pain meds and was just uncomfortable. Until yesterday.

I hurt from my chest to my knees. My palliative dr was here today and says it makes sense, the area that was radiated. It should subside in a day or 2.

Usually I can make it till the afternoon without taking pain meds if I need them but yesterday I started taking them in the morning. Today is the same. And I’m not sleeping again. Had to get up to pee in the middle of the night and was exhausted after but still didn’t sleep.

Add on fatigue. Geez. Just to get off the couch seems to take more energy than I have. I’m borrowing spoons from tomorrow just to get through today.

My sister took me for my radiation appointments in Victoria on the 27th. The plan was to go to the museum when we got there but it was too late. We took the ferry because I hate going over the Malahat.

The 28th I had the radiology oncologist appointment at 11:30. The radiating pain I’ve had around my right ribs is probably caused by the tumour pressing into my spine and spinal cord. He said that’s usually how it starts.

CT appointment was at 12:30 to map my right ankle and spine then back to the hotel for an hour.

Radiation was supposed to be at 3:30 but didn’t happen until about 4:45, they were waiting for the CT map. Got my ribs done and hearing the sound of the radiation warning kicked in my fight or flight. Took them a while to get my ankle set up. They’d tape it to my other foot and it came unstuck twice. They finally taped it around the table. By the time I heard the radiation noise again I was a mess. Got out of there and into the parking lot and was just vibrating. Adrenaline rush had kicked in. Took about a half hour to get my body to calm down. Then back to the hotel.

Went to the museum to see T-Rex Sue then to the ferry. My cousin would laugh because we were the first car they stopped loading and had to miss a ferry. Got home later than planned.

The decision to do this, the discomfort from the trip, the day long appointments, the anxiety, sleeping in a strange bed, being on steroids again….all of it is exhausting. I woke up yesterday feeling like I was getting bronchitis but I feel better today.

My sister was awesome, couldn’t have done it without her. I’m hoping I don’t have to do it again. Glad to be home.

I got called yesterday with dates for radiation. One day for oncology visit and CT and the next day for radiation on my ankle. Then they’d book 5 days for my spine. Uh uh. No. When I was talking to the dr last we’d agreed on one day of radiation. They had the dr call me to make sure I understood the pros and cons of only doing one day on my spine. Considering that my body is riddled with tumours that aren’t going to shrink on their own or go away, I’m fine with one day.

My sister and I will go down to Victoria on December 27th. All my appointments, including the radiation, will happen on the 28th and we’ll come home on the 29th.

Not stressing about it all is going to be impossible. I hope the tumour doesn’t outdo the timeline and I make a lousy passenger.

3 days ago my good hip turned bad. It hurts as much as my other hip used to. Problem now is that navigating on my knee scooter is harder. The bad hip now is on the same side as my bad ankle.

To use the knee scooter, I put the knee with the bad ankle on the bench and use my other leg to motor around, putting pressure on my knee. Now every time I lift my pushing leg, I get severe pain in my hip. It’s also hard to move around in bed. I’ve been popping pain pills at least once a day because of it. Today the pain is only ramping up to a 5 instead of a 7 that it’s been. I’m hoping it just goes away.

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.