I know I’m a few days late posting the next installment of my cancer journey. I almost laugh now because in one of my support groups, they posted this….
Now I covered up a word (use your imagination), but it’s still funny. In fact, my response to this was, “I’m small enough to be a hobbit”. So…onward with my journey…
I logged into Sutter Health’s system yesterday to pay for my labs and doctor visits. In addition to chemo meds, these charges are always waiting to be paid. I started exploring their system and found my visit summaries from my oncologist.
Whether it was lack of sleep, a chemical imbalance because of the medication, or the fact fighting cancer is mentally (in addition to physically) exhausting, I became an emotional wreck. First, I was very angry at what was noted and then I cried all the way home from work.
I am more than aware these notations are not for communication with the patient. However, if doctors are going to note conversations or their interactions with their patients, they need to stop the one-sided comments.
For example, one of the notations state that I “refused IV chemo”. First, let’s use the appropriate words. I was given information, made an informed choice about MY health and “declined” IV chemo. It was my choice. Using “refused” sounds like I was an obstinate child who didn’t do as her parents ordered. They think “informed consent” is a punchline of a joke instead of a patient’s right.
Several observations use the word, “denied”. Denied symptoms, denied having this or that, etc. In my opinion, that’s another word that shouldn’t be used in this area. I was asked a question and I answered that it didn’t happen or didn’t apply to me. How about “negative” and “positive” when correlating responses to symptoms, side effects, etc. Using the word “denied” implies the patient isn’t being truthful.
My doctor was nice enough to notate how I am generally unhappy with my treatment. Yes, I can say that’s a fair statement. What isn’t accurate is she neglected to mention how her nurse verbally attacked me for refusing the preferred IV chemo when I asked for another medication because I am having trouble paying $232.68. every three weeks. Or I’m unhappy Sutter Health chooses to only provide cancer support groups for one area of the county, during the day and it’s not accessible to all patients.
Now, testing showed up in the notes. I refused a few suggested tests. Why? One again, was over 20 miles away and would cost me a day of work. They have an imaging center close to where I am, but refuse to offer all testing there. I don’t think it’s out of the question to provide genetic testing in all locations; esp. when it’s just meeting with a doctor and taking a DNA swab. Silly me for being practical (and cynical; at this point). Oh, she also left off that I mentioned I couldn’t afford the $350 for another one of the tests she suggested.
I am fully convinced healhcare doesn’t exist. There is no caring on behalf of these desensitized doctors and nurses. A health system is in place to offer treatment; if you can afford it. If you can’t, they don’t want to hear it. They will give you referrals, but most don’t work out (make too much money, not enough grant money, not old enough, not the right cancer, etc.).
So, going forward, to protect my sanity, answers will only be “yes” or “no” or “fine”; unless some further explanation is needed. This is not the first time my character has been accosted by those who are supposed to be helping me. I neither can fight this notation battle, nor do I care to.
I read another cancer blog today where the writer received some negative feedback because she wasn’t upbeat enough. That’s how I feel sharing this with my friends and church family. I feel negative. Yet, the reality is, this battle is far from easy. The trials we have to go through aren’t perky, happy, or fun. In reality, battling cancer SUCKS! It’s horrible. Doctors only care about treating the body; to hell with the mind or soul. The purpose of my documenting this is to give a realistic guide to what I am having to deal with. This is a real-life, first-hand accounting. I know it’s hard for some people to deal with; but I’m not sorry for sharing what gets covered up with mainstream accounts.
It’s almost depressing to feel so alone, while trying to retain your dignity, sanity and carry on in your daily life and battling a life-threatening disease. I take longer showers now so I can cry uninterrupted and it won’t be visible. My 12-year old doesn’t need to see my worries, insecurities and breakdowns. Being strong has never been harder.
I am eternally grateful to those who have been able to donate, which allows me to continue treatment.