Tonight's picture was taken in September of 2007. Mattie was 5 years old and in kindergarten. I enrolled Mattie in an after school club called, construction club. Mainly because the club was run by Mattie's kindergarten teacher and Mattie showed interest in building and constructing. In any case, what you see in front of Mattie, was one of his creations. The club used a lot of every day materials found around the house! Mattie absolutely loved using a glue gun and tape and frankly construction club was a great experience for him, because he came into his cancer journey with the love of building. Which made it easier to entertain Mattie in a small hospital room, as he needed boxes and every day materials to create. I can't tell you how prolific Mattie was in the hospital! Many of his creations still surround us in our home today.
Quote of the day: No friendship is an accident. ~ O. Henry
Today I went to visit my friend who is managing with metastatic cancer. It is hard enough to be diagnosed with cancer, but learning one has metastatic cancer adds another complicated layer to the equation. Mainly because with many metastatic cancers, a "cure" is no longer possible. The best medicine can do for you is to try to keep your disease stable, until the next medical break through is developed. A rather sobering reality if you ask me. Yet the medical profession seems oblivious in addressing this psychosocial reality. But I assure you hearing this news has consequences.
In any case, while I was with my friend, her medical provider called her. In the midst of the phone call, my friend learned the results from the blood test she took yesterday. First of all, hearing anything but glowing news over the phone is hard, but when there are unexpected changes (which unfortunately always arise), then naturally a patient has lots of questions and concerns! I am not sure why I was surprised by today's call, as I know all too well the lack luster treatment of psychosocial issues, yet I found I was internally getting angry listening to my friend as she was talking to the medical provider.
The medical provider told her the results, which had changed from the last time she took the test. So my friend had concerns and questions as to why this change! In fact, she asked to have an appointment with her doctor to consult on this and on how this would impact her next infusion of meds. Here's the kicker. The medical provider on the phone deemed my friend medically stable and therefore felt she did not need an appointment with the oncologist. Are you getting the picture? In essence the provider discounted the psychosocial issues my friend was describing and experiencing, as if none of that mattered and was also not her responsibility to address.
I was hearing all of this and remained calm. Actually showing no emotion! As I figured my distaste for what I was hearing would not serve my friend well. Yet I remained by my friend's side as she was communicating by phone. Later in the day, my friend thanked me for being so calm. As it helped her, and enabled her to reframe the situation and instead understand that if the doctor wasn't alarmed she shouldn't be either. I am very impressed with my friend and her courage, but I know thousands of patients receive news every day over the phone. They also maybe hearing this news without someone next to them who can help process the disheartening transaction. What happens to them? A rhetorical question!!! All I know is, with the state of health care, Mattie Miracle's voice is needed more than ever, and we have a long way to go to change a system that refuses to examine and treat a patient holistically!
1 comment:
So frustrating! I imagine being an advocate for yourself when you’re facing a chronic illness can be utterly exhausting. Day in and day out. Glad you were with your friend as she processed this information.
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