Since the beginning of my treatment, I have asked questions and attempted to make the most informed decisions possible. I've worked at being a good self-advocate without being difficult, just because I'm pissed off and fed up.
Sometimes that's a challenge.
I am, however, fundamentally, and through lots of conditioning, a good girl.
I've put up with a lot of crap and maybe endured some things I didn't need to, for the sake of keeping the peace, getting through and not rocking the boat. The need for approval runs deep in this girl.
Tomorrow, I go in for further testing on my port. The nurses in the port unit are work in very cramped conditions and seem overwhelmed. Last time I had an appointment, I waited for over an hour to be seen and was then treated like I could not possibly know anything about my own treatment or medical experiences.
After five painful attempts to access my port, they filled it with fluid (what the nurse at the treatment unit the next day, called "Drano for ports") that stayed in overnight. That didn't work. When I next spoke the port-team coordinator, I was told to come in for a "portogram", an X-ray with contrast fluid inserted, so that it will all show up better on film.
I asked "Can you tell me why I need to do this? We know it's broken. What will the portogram tell us that we don't already know?"
The coordinator seemed taken aback but answered readily enough: If the port does not seem to be obviously broken, they can try a slow flush over four hours of the same fluid that sat in my port overnight a few weeks ago. Apparently, pushing the fluid through slowly can be more effective.
All of this begs the question - Why didn't we just do these things in the first place? Why did I have an ordinary Xray and why the overnight with the Drano?
If the portogram shows that, after more than seven years, my trusty port is truly broken, they'll have to replace it. It's relatively minor day surgery, and worth it to have a working port, as 5 years of chemotherapy has wizened and toughened my poor little veins. The two treatments I've had since it stopped working have been stressful, time-consuming and painful. My arm is still covered in bruises. A working port-a-cath makes treatment so much easier.
But there is a catch. They want to put it in on the other side (it's currently on the left). This would mean another very visible scar, just below my clavicle. And because there is very little fat left on the mastectomy side, the port itself will likely protrude as well. The area just below my clavicle on the right side is already sensitive, the idea of adding a port to that side is extremely unappealing.
I know that, in the grand scheme of things, this is nothing but I'm feeling very annoyed. I think I'm going to dig in my heels, this time. If my port worked for 7.5 years on the left side, I see no reason that a new one can't work on that side again.
After everything I've been through, it may seem like an odd place to draw the line but this good girl has had it. After tomorrow, no more tests. It either works or it doesn't. And I'm not giving up my left side port without a fight.