Non ducor, duco.

You’re all so good and wonderful, thank you!  Your messages are so lovely and supportive.  I feel the hugs through the ether; the emoticons, and warmth is so alluring, stunning and enveloping.  I feel cocooned and shielded from the chill of unlove.  Let me fill you in on today, as I soak up your care and love.

So they changed my pain meds to a continuous dose, and the meds are directly injected into me by a pump. It gives me more freedom to move since I’m not tied to an IV pole, just carrying a small pack like an extra purse.  After some discussion the palliative care team came up with a low-ish dose to run continuously with a boost shot as needed.  They said that they were basing the dose on the readings of this week, when I used the booster pump 26 times in 24 hours, indicating high levels of pain.  They added that the dose would be lower than I was using for the last year.  I gave up on trying to explain that the levels on Monday were atypical.  I just sighed and nodded.  Last night was again very broken and I had difficulty sleeping with considerable pain.  I had determined not to use the booster button as I wanted to get a sense of how well the basic levels would work.  I suffered through several nightmares, waking up at least once shaking and with a dry mouth.  I was feeling dopey, and would fall asleep while texting a word and realizing that I had typed a letter and then I forgot what I was saying but 3 minutes had elapsed.  I’d have tremors in my hands, and be unable to focus.  I did send a text saying that I could never be a junkie.  I really hated the feeling of having blurred thoughts, vision and awareness.  I disliked the shaking, the numbness, tingling and dry mouth.

PROGRESS!!  Because I hadn’t used the booster shot, but was still reporting pain, they finally accepted that my usage level that day was abnormal.  During the morning consultation, the questions changed to be more about what was a normal pain level and what I usually did to manage!  We actually got to the point of cognizance that at least some of the pain was stress induced, and it was not all physical.  So I’m agreed that I’m only partially nuts! 🤣🤣. Now, anyone who says, “But girl, you should try to relax! You just have to lie back and let other people do things!” is probably going to have something thrown at them.  It will be as heavy as I can manage, too, and I’d probably want it to hurt and leave it mark. 😡🤨😖     

We’ve catalogued several sources of my stress. Some of them feel superficial, and some are more pertinent, so with minimal judgment, here are a few:

• Bland food 
• Emergency surgery 
• *Not having been home in over 3 weeks without warning* 
• High levels of post-operative pain
• Living in survival mode for long periods 
• No physical contact with people 
• Boredom/little stimulation 
• High levels of chronic pain before the surgery 
• The uncertainty of cancer 

I’ll just list them. I felt both better and worse when we listed them, because on the one hand, it clarified that I was facing a lot and it was normal for that to be overwhelming, and at the same time I thought, “I do have real stress factors that need to be addressed!  It’s not all in my head!”  

Physio gave me a break, not through kindness, but because I had appointments in other parts of the hospital.  So I got to see out the windows of other floors, and to talk to different people.  All exciting to me, which shows how small and confined my life has become!  I’m more able to move myself out of bed, and could transfer myself to the gurney for my scans - a week ago that was as likely as growing wings! 

On top of that, I’m allowed access to a spiritual advisor, so the hospital chaplain came to visit. I’m going to emphasize the value of the corporal good works of mercy, which includes “visit the sick” because I can again attest to the benefits of a simple text to the morale of the bed bound.  While I won’t detail our conversation, he assigned me some “homework” due by our next meeting on Friday:   What does it mean to be here and present at the Civic Hospital?

Once again it’s 2am and I’m wide awake. The pain is present and I’m very aware of it.  I had a couple of hours sleep, but not particularly restful, so I’ll try again now.  I’m going to expect your virtual visits, because they form part of my daily routine, even if I still can’t respond to everyone individually.  It’s stupendous to know that Saskatchewan finally has warmed up, even after cycling through all four seasons rapidly.  I’m disappointed to hear that the strawberry crop has been damaged by frost (in June!!) but I hope that there’s some recovery. Sun chips are yummy, thanks for the drop off!  And to my other sister who rescued lunch, many, many thanks!  Also thanks to her son who allowed me to have a portion (I know that in the normal priority list I’m scraping through the cat’s leftovers! 🤪🤣). A massive virtual hug with real squeeze for the darling friend who took a different route on their walk just to send me photos of flowers, and to my beloved friend who promises to help me source any equipment that I’ll need when I return home.  Plus a shout out to the kitchen worker who dropped by last night with an extra sandwich because he said that dinner was inadequate 😘.   I’d have to call this a really good day! Until tomorrow, though, may you have a quiet night and a restful sleep and I hope that tomorrow really is another brighter day for all of us!