We met my Macmillan nurse on Mon, and she’s absolutely lovely. My husband is an Aussie, and she told us her family spent a year living in Perth WA. Turns out she lived 2 streets from our flat in Cottesloe, and went to the same pub in between our street, about 8 years apart.
I was initially given very high dose steroids to relieve the spinal cord compression, and am now on a very low maintenance dose.
That means that I’m now getting significant nerve pain. My nurse said I was being discussed at the MDT meeting on Tues morning, and she would ring on Tues afternoon to let me know what I’d be given for the nerve pain, because morphine doesn’t work.
I know anndanv and tvman have been there, done that & got the t shirt for intractable pain & it causes many sleepless nights.
No phone call on Tues or Wed, so I rang on Thurs and was told my nurse wasn’t in. They checked & said a request had been sent to my GP to prescribe something. It’s now Sat am and I haven’t heard anything. The pain is waking me up at 5 every morning & I can’t get comfortable again. The TENS machine helps.
The Community nurse came yesterday & changed my catheter. She said she’d call & let me know that I was registered so I’d get bags etc delivered. She rang an hour later to say she’s registered me & contacted my own team to let them know she’s seen me, and made an appointment for the next change. She put me down for a phone call every 2 weeks just to check in. That’s how it’s done.
xx
