"Please do not be alarmed," it said, "by anything you see or hear around you. We are now cruising at a level of two to the power of two hundred and seventy-six thousand to one against and falling, and we will be restoring normality just as soon as we are sure what is normal anyway. Thank you."
The Infinite Improbability Drive from The Hitchhiker's Guide to the Galaxy, by Douglas Adams.
Yesterday, we got that sign we were looking for. I went to change BR's Fentanyl patches, and found he didn't have any on. That's never happened before, so it didn't even cross my mind as a possibility. I must have gotten distracted while changing them the last time. Fuck.
I'm kinda glad we've started the end-of-life conversation anyway. As BR becomes more and more tolerant of the opioids, his pain level will continue to rise. At some point we are going to have to make the call to take the dosage to a level that will leave him unconscious most of the day. I imagine that's when hospice will be called in.
Anyway, he isn't going down without a fight. We met with the pain management team yesterday and told them to schedule the cervical stimulator trial ASAP.
10 comments:
Hi,
This is the first time I come to your blog. I was at Herrad's.
Hope you both find the best solution to easy the pain.
I support any decision.
Love,
Ana
hi, i'm also here from herrad's, & i just wanted to give you my support for anything you can do...unfortunately, here in the us, it's not even close to what it should be...
Steve - still thinking about you both a lot. I am just struck how you seem to be in the worst "between a rock and a hard place" I've ever seen. Need to live in TX to be near BR's family but living there takes away his access to a pain mgmt tool that didn't make him a zombie. I hope cervical stimulator trial can be scheduled stat.
Hi I'm here via Herrad's blog too, sending a lot of good thoughts your way.
Stephany
Hi Steve, how nasty for you both. I am glad you got some benefit of the situation and used the crisis as an opportunity to talk about the the subject we all wish to avoid but none of us will- not just our MSers- all of us. Herrad and I found life a lot easier when we cold see an end that would be manageable and not a descent into chaos. It is not something that needs to be considered again until it is necessary. In the meantime we can enjoy what the moment brings without the weight of fate on our shoulders.
Gosh I was so upset at your last post. I am glad it was resolved and you can enjoy your hugs again!
Lots of love to you both
Richie
Hi Steve, Hi BR,
Thinking of you both.
Big hugs.
Love,
Herrad
I am *so* glad to hear this was a SNAFU and not something more serious. Steve, I hope you're not mentally beating yourself up. I love you both.
Kim
You guys are so great! Thanks for the supportive comments.
Richie - yes, spam can be very upsetting. :-) I'm still having a hard time wrapping my mind around a hospice life. Time to start reading up on the topic.
Kim - I now make sure I have the new set of patches in hand before taking off the old patches. That should go a long way towards keeping this from happening again. Live and learn.
Steve, we/I don't tell you enough how much love we feel for all you are doing for br. I did have a bit of trouble sleeping last night after that last post. tell him I love him.
billy
Powerful topic takes guts to share. Even more guts to live through. My thoughts are with you two.
Caregivingly Yours,
Patrick
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