Hello all,
My Mum has (they believe) primary lung cancer with liver and bone metastases. She's in palliative care.
She was diagnosed in November and there have been all sorts of issues with her care. Her main symptom and the biggest thing in all of our lives is pain.
In February she had one round of radiotherapy to reduce pain in her ribs - and after a horrendous pain spike - the pain drastically reduced. It was amazing. For around 3 weeks until her spine pain hit. That's been ongoing for the last 1-2 weeks.
At one point we had the palliative out of hours team out 4 times overnight to inject pain relief and sedatives.
For two days we were advised to give her her liquid Oxycodone hourly. As in, literally every single hour. No one got any sleep.
They mentioned syringe drivers. We asked, the district nurses said good idea and we thought it was happening. We then get told that a consultant had not agreed, and they wanted to send Mum for an MRI in case of spinal cord compression. Fair enough. My Mum is petrified of MRI machines due to a bad experience, but with drugs, she can get it done. The biggest concern was how she would lie on her back.
Well 4 days in hospital with different combinations of drugs she managed to get it done,and spinal cord compression was ruled out.
However, they are still hesitating on a syringe driver. We're told it will be discussed at a meeting on Monday.
Of course we have to wait for that but I wonder if anyone had any experience in insisting, or things we can say to encourage this. If they decide against it, can we appeal or ask for a second opinion. It feels like they're saving this for when she's closer to EOL but everything I read says she can have it at any time.
Mum can swallow ok (she does get some sickness) but is on liquid Oxy fast release (as well as tablet prolonged release) because it is faster acting when her pain hits.
I'm dreading her coming home and nothing have had changed. Even now I'm getting messages from her in the ward saying she's in a lot of pain but the nurses are very slow in delivering her pain relief.
If it helps Mum is in Cornwall,but the hospital she's at currently is North Devon as it's closest (another problem but I won't go into that now).
I know I may not get advice as every situation is so different, but at the very least thank you for letting me get it all off my chest!
