Chemo finally started. Pain getting worse in all the places there are no reason for there to be pain. Spent lengths of time this morning in 9/10 pain this morning when PCA wasn't available for various stupid reasons.
Not sure exactly what I've been doing most of today. Been a blur of frustratingly inefficient pain medication, of exhaustion from spending the night watching for the PCA rather than sleeping, of being confused by all the different teams of people having different information and opinions. Thank goodness for my parents. Mum's been acting as a nurse most of today and both have been invaluable (as always, but today in particular) with expressing my concerns and opinons, and understanding and remembering what people say and sending people away when I'm too tired.
Platelets and haemoglobin are both low so I'm having a couple of units of blood, one with/before chemo and the other will start early in the morn before tomorrows chemo.
I've been switched to a different pain management team and they switched my drugs so hopefukky these will be good.
But yeah chemo waaas delayed to today so I wont finsh till sat. ''
Please leave family names out of comments, internet safety everyone! :)
Katie - so sorry to hear you have been in so much pain and very disappointed to hear that your pain management does not seem to be under control. One suggestion might be to get your Palliative Care Guy to come for a consult. Palliative Care Specialists are usually VERY good at managing pain - he may have some better suggestions for someone in your position who is not the usual post-operative patient.
ReplyDeleteI really hope things improve soon.
- FCS (who is also a doctor and sad to hear your treatment is not optimum)
Katie! Just looking through your twitter account, fantastic to read that you needed to wake just for the bathroom and not for pain. Like most people, I've never reached anything near a nine or a ten. You're insanely brave. I hope that this okay streak continues for a while. You deserve a break. Please believ that one day this will all be in the past.
ReplyDeleteLove and support. Xxx
I can't read your Twitter account :(
ReplyDeleteBut glad to hear it sounds like you might be feeling a bit better :)
Hope things continue to improve.
- FCS
Hi there, and thanks for the update. What courage and stamina you have to deal with all your day is throwing at you. You're an inspiration to all who read your blog.
ReplyDeleteWith the new pain management team in place, and Mum and Dad on the case (sounds like you're all at the coal face each day), I hope, wish and pray you will get the comfort and relief you need, and some good sleep will follow.
Hope there's a chance for a little Easter chocolate on Sunday if you're feeling like it. If not, don't worry as most of the seasonal choccies are rubbish (I have a conspiracy theory that they contain remnants of leftover eggs from at least the past five Easters).
All in the West send their love and support.