Good morning,
im so glad the new year is nearly here , for some normality. as you all know the waiting is the worst thing with cancer appointments , I have 4 appointments so far in January, chemo, Oncology ,CT scan and palliative care at Sobell house. and the only one im actually excited about is Sobell house , and that's at the end of the month. but it will be a more casual appointment talking about care, which is what im looking for, someone to talk to about the emotional death slide im on , how im feeling and coping. Unfortunately i don't get this with the oncologist team. they are there for treatments and information about your cancer , don't get me wrong they do a fantastic job , but haven't been on the ball with me. not entirely there fault I suff with Autism and ADHD. so if you say you are doing something or dismiss me, you can't change it with out me having complications . chemo dosent bother me to much , just after have a few issues CT scan is always something that get the brain going , Has it spread? or is it working ? Palliative care im so hoping to have a great weight lifted off my shoulders. im also finding write any old s*** down is also helping me get things out of my head. Don't care if its read or not its therapy for me .
Hi simon IVA
My wife was referred to Sobell House fairly early in her cancer journey though at that time she had not really started on any treatment and when we went they it seemed more a case of us getting on their books. Two different loads of chemotherapy however managed to render her cancer stable and we have been there for about 10 years now - that is a normal we are fairly happy with. We just had her annual review and after we popped in to the Maggie's centre that I have found to be really helpful.
With us our son has autism and I have ankylosing spondylitis, I am under a consultant at the Nuffield Orthopoedic with that - handy as it is just over the road of course.
When we work out what normal means perhaps someone will let us know.
<<hugs>>
Steve
