Fred landed in
Emergency the second week in July with intense pain in his lower back and we
just assumed that it was his kidneys.
Not!
After the preliminary
scan, they came back to us with information that there are metastasized
lesions (one on the lumbar spine-L2 and another on the acetablum – the bone
around). Holy Crap!!
So they want to do more (and more and more)
tests: CT scans; full body scan; MRI; still not able to isolate the primary
source of the cancer. Finally they did a lung biopsy and still have not been
able to isolate the primary source.
It is getting weirder and weirder. The
biopsy report said that the spot on his lung is not the primary source of the
cancer nor is the prostrate. They may look at the gut.
The
big issue is the pain. He has fentynol patches, is taking hydromorph and
medical marijuana. Gets a little spacey at times but is managing to control the
pain pretty well.
This
one has really scares me! Not only does the concept of Cancer scare me, the
fact that they can’t find the type of Cancer that is it; where it’s coming
from; that he is in so much pain; and that there is so little I can do to help
scares me even more!
For
the most part, the care and the hospital staff have been excellent . . . except
for (you knew there would be an except for):
Ø
It seems that the Family Physician is left
out of the loop! And who knows the patient best? S/he receives copies of the
lab work but does not have access to the Hospital records. And s/he is not even allowed
to sit in on relevant discussions with the Care teams (so I was told).
Ø
It seems that the Doctors (Hospitalists)
are changing continuously. In the 2½ weeks Fred was in the hospital, his
hospital doctors changed three times.
Ø
For the most part, the staff did look on
the patient and family as resources for the Care team. But there were incidents
where the staff treated us as if we were not credible resources in the
situation. We were told certain things by the attending doctor, but the nurse
questioned these and refused to have the doctor contacted to clarify the instructions.
What disturbed me (and I expect other patients and family) most was the lack of . . . or . . . mis-communication amongst the staff - from the top on down . . .
and
the inconsistency of the care.
What disturbed me (and I expect other patients and family) most was the lack of . . . or . . . mis-communication amongst the staff - from the top on down . . .
and
the inconsistency of the care.
