Procedures are scary, but they happen to you, sometimes while you're not even conscious. Recovery is scary, too, but in a soul-grinding way where you have to experience every excruciating moment of your inability to function like a normal person: Cleaning the drain every time I shower because so much hair falls out, days where I can't keep food down, days where I can't stand up or walk so I crawl on the floor instead, taking pills that make me feel weak and ill because without them I'd die, going to sleep exhausted and waking up tired.
When I started this blog, shortly after my diagnosis, there were several reasons for writing. First, for myself to have a place to put down and process everything that was happening to me. When I can write it out as story, I can see it more objectively and less painfully. Second, was to have a way to keep those who cared but were too far away informed about my treatment. The last reason is that I wanted a record of my experience for anyone else who might be about to start the same journey. This last reason is the reason that I've decided to start writing again.
After my last blog post, my recovery seemed to be going well aside from repeated infections of my salivary glands which were damaged during the radiation treatment. In February, after having spent nine months doing treatments and trying to recover from them, I finally returned to work. Every day since then has been a struggle. I feel like I do nothing but work and sleep. The weekends are spent recovering from the weekdays. I no longer go grocery shopping with any regularity. My apartment is constantly dirty. If it weren't for my boyfriend I think things would be completely unmanageable. He gives me the motivation to do as much as I can and picks up the slack when I cannot do any more.
It scares me to say, but I'm running out of energy to do the work of getting well. Spurred by that fear, I've decided to step up my involvement in my recovery. I've started putting all those anatomy and pathology college courses to work, doing my own research into my condition and the treatments. I've begun the long and difficult task of fighting with my doctors to get the individualized care I need to complete my recovery.
I learned from the period of my life where I struggled with endometriosis that doctors don't want complex patients. They want easy solutions that they can cure with lifestyle changes or pills that will just make you go away. Most doctors only see the symptoms and therefore only want to treat the symptoms. They don't want to try another surgery, an experimental treatment plan, or anything that requires them to stretch themselves. In my experience, they will treat you as poorly as you let them.
I am exhausted now and I'm scared I've put this off too long, but I am also angry at the way my life is and the attitudes of my doctors so I'm hoping that will give me the energy to complete this fight. Upcoming posts will be about my research, the treatments I'm trying, and the struggles with my doctors to get the care I need to get well. I'm hoping by sharing this here, it will benefit others who are now on the recovery side of thyroid cancer treatment. Maybe it will also help those close to me to understand. Chronic illness is hard for everyone and I often feel like they think I should be better by now. They deserve an explanation of why I am not cured, and to see how I am trying to be. The road to recovery is not a six lane, smoothly paved highway. It's a dirt track through the wilderness with few signposts. This is the hard work of recovery, and this is how I will get well again.
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