Just as we thought we'd caught up with all the changes in the last 3 months they've changed again.
I had a second assessment with the palliative care team on Friday & the Consultant said there was a significant difference in a week. My OH has been struggling to manage.
I'm losing my upper body strength which makes transfers very challenging and sometimes feel unsafe. I've now got a hospital bed in the therapy room, commode and a bath lift. I'm going to have 2 carers for an hour in the morning and evening and can also have help with a bath 2 or 3 times a week. I haven't managed to get on top of the pain since Friday and it's so draining. The amitriptyline is being increased slowly so I'm still on a very low dose & knocking back the oramorphine every couple of hours.
My sister and I have cancelled our week in Scotland in early June. I'm heartbroken and relieved in equal measure. The travelling alone would be a huge challenge and a remote Scottish Island not a good place for me now.
I'm not ready. You'd think by now I would have learned to expect the unexpected but I would just like more time to spend with family and friends.
So, just need to sort out pain control and make the most of this lovely therapy room. I've got this. xx
