Today, I don't know where to start except to say that I am frustrated. We did visit the doctor today, and we have increased her steroid medication. Going from 4mg to 6mg since Friday and upping it to 8mg as of tomorrow.
I haven't noticed any significant improvement yet, but will wait until Friday to measure that in order to give the meds time to get in her system.
She seems more childlike these days and her anxiety levels are high. It bothers me that I can't call the family doctor for support on weekends or after hours. Calling the palliative nurse is semi-helpful, but I feel a bit at odds with her too. For the last several visits, she tells me she will come at a certain time and then shows up an hour earlier - I think, hoping to avoid me. Why? I don't really know. I think it is because I do my own research and ask very specific questions.
I inquired about a palliative doctor, but it seems I am asking for too much. When a patient opts out of treatment, or has been told that further treatment is no longer an option, the oncologist, cancer clinic and specialists refer the patient to their family doctor. All well and good, I guess, but something is lacking. The palliative nurse, while professional, has limited knowledge of mom's condition and often surprises me with her lack of knowledge. The problem is, I guess, that mom continues to "look good" despite her decline. Assessing her in half an hour doesn't equate an accurate assessment of her true condition. Just because she isn't bedridden and vomiting, doesn't mean she is doing "well".
Both the family doc and the palliative nurse have decided that the 2nd MRI doesn't indicate any significant interval change, because that is the conclusion of the report. However, I have read both reports and there are marked differences that neither of them seem to appreciate. I wish I could sit with a neurologist and have them bring up the images on their computer and give me their opinion.
I woke up this morning feeling discouraged and distraught. I don't even know why. I really had to pull myself together to face this day.
Hoping that I wake up feeling more together tomorrow.
Thanks Brayden for your constant kindness and NatR for your heartfelt virtual hugs.
Holding strong, TrueHeart xoxo