I found this pain scale that pretty accurately gives a measurement of my pain.

I live at ‘4’. When I had the side effects from chemo it was an ‘8’. When my neck was bad it was a ‘9’.

Now I have spikes of pain that hit ‘6’ in my neck. This happens when I go from sitting to standing, emptying the dishwasher, feeding the cat, looking up after I’ve been playing on my iPad, reaching into the fridge, getting in and out of bed, etc. since I’ve been taking Gabapentin, the worst spikes, zinging up the back of my scull, are rare, but still happen.

I put off doing lots of things to avoid the spikes. Some days I wish I had a live in nanny to look after me. Others I just want to stay in bed. I do have a house cleaner that comes in once a week so some things can wait till she’s here.

My ankle is a whole other issue. Most days it swells up and I usually wear a compression sock for support. I’m careful with it because it’s very weak and I’d hate to break it.

My palliative doctor called today to give me the results of the bone scan I had Tuesday and the CT I had yesterday. New tumours in my right ankle. That was expected. Uptake in some tumours in my spine. What got me is a tumour in my left mandible (jaw). Still trying to wrap my brain around it. There’s a shadow around my pancreas. They could do an MRI but we’ve decided that because I don’t have any stomach pain, we’ll do nothing for now.

I told her about being ghosted by the dr who is supposed to do my M.A.I.D. assessment and she’s going to see if she can find out what happened.

I have a phone appointment with my oncologist on the 1st. Wonder what he’ll say.

So the pain in my neck is back. Sorta. It’s more the nerves at the base of my scull and the muscles in my neck. The palliative dr has prescribed Gabapentin at my request. I started taking them last night and I think they’re working for the zinging pain at the base of my scull. Now to fix the muscles.

This time, with this pain, I’m pretty limited with what I can do. I can’t drive. Bending hurts so my kitchen is a mess. Hurts too much to empty the dishwasher but my sister will be here to do that. My house cleaner will be here Monday. And I’m getting pretty bored, not being able to bend my head without extreme pain.

I’m also scheduled for a bone scan Tuesday and apparently a CT scan was supposed to be scheduled just as soon but I haven’t heard anything on that yet. Both of which I was not expecting for a couple of months. These also include a phone visit with my oncologist on the 1st. I’m hoping there isn’t another trip to Victoria in my future.

And…one of the doctors doing the assessment for my M.A.I.D. application is going to be visiting me Wednesday. I was asked by someone how I felt about this. Oddly enough, I’m looking forward to it. I’m interested in what kind of questions she is going to ask.

The palliative “team” was here today. The dr said we could X-ray my ankle to see what’s wrong with it but I turned that down for now. I think it’s mets and she does too.

The happy pills she prescribed last time are working. I don’t feel like crying all the time. We talked about what I do when I have my freak outs and how I cope with them. I smoke, read, cry…

The dr said she was glad I’ve thought everything through and am doing what’s best for me. Right now it’s quality over quantity. She said too many times she’s seen people do treatments they may not want but their families do. As a terminal person, in the beginning I did the treatments for my family, as I’m sure we all do. Now, it’s about what I need, what I know I can handle.

I gave them my paperwork for M.A.I.D. They’ll fax it in. It has to be assessed by 2 independent medical practitioners and takes about 90 days.

Now I’m just being monitored. Scans will happen occasionally to see how much the tumours have grown and where they are, and they’ll help me manage my pain.

Had phone appointments with my oncologist and radiology oncologist today.

My oncologist offered me a different IV chemo at a low dose. We both agreed that I don’t react well to chemo and at this point it would be quantity over quality. I turned it down.

We talked about the odds with a bone biopsy and that’s a no go too. I’ve had enough induced and non-induced pain this year and the odds aren’t great with a biopsy.

He said I’m “…thinking clearly and have thought this through…” which made me feel good. I get a CT in 3 months. At this point they’ll do those to keep track of where I am with regards to tumours. At this time, there are no other treatment options for me.

The RO said that my neck probably won’t get any better than it is. I can get a soft neck brace to wear when I feel I need it and can get a prescription for a stronger Voltaren if I want. She was happy with the treatment. Compared to when she saw me and now, when I could talk about other issues, let her know it had worked. She has given me an open invitation if I need more radiation for pain management.

I knew I was at the end of treatment options but firming it up is a little overwhelming. I’ve been asked what I want to do with the time I have left. I just want to be. I’ve lived the last 11 or 12 years waiting for my next blood draw, CT scan, bone scan, appointment and results, not to mention all the side effects, trying not to focus on them and still live my life as normally as possible. It hasn’t been easy. The rest of my life won’t be either but it is what it is.