Day 19 – My Healing Journey

Day 19 – Where’s The Manual?

Wouldn’t you think that after all the thousands and thousands of cancer patients that go through the clinic each year, that they would have a pamphlet or a manual to provide to each patient of all the things they should do prior to treatment, during treatment and after treatment?

It boggles my mind that nothing like that exists.  I guess that would be too much trouble for them, it’s much easier to assume that each patient is going to do their own research online ahead of time. That is a pretty big assumption, especially for older people who aren’t computer saavy.  For me specifically, I was already OVER informed on so many levels before my treatments, that I didn’t want to do anymore research on the topic. 

I would have much preferred my oncologist sitting me down, handing me a pamphlet that outlined what was to happen, preventive measures for each situation and some resources.  I would have paid good money for something like that just to avoid all the pain that I had to endure all along the way.

As I mentioned before, I know myself, and I know the way my mind works.  The power of suggestion is pretty powerful  which is why I never wanted anyone to tell me what to anticipate with respect to the side effects. I figured my body would let me know and boy did it. 

What I am talking about are preventive measures. I think that it is their responsibility to inform every patient of options available to ease their comfort, pain and stress. A little pamphlet would’ve been a great addition when I was gearing up for my first treatment. It would’ve told me to suck on ice chips during my infusion to avoid the mouth sores, it would’ve told me to go out and buy the ice booties and hand mittens ahead of time so that I would be prepared for my first infusion, it would have told me I might lose my hair with my specific chemo drugs, it would have told me about the pre-chemo drugs, the anti-nausea drugs, the after chemo injection for white blood cells, etc.  Instead, I went into battle with no armor.  

I am still angry about finding out about these things after the fact, nobody should have to suffer when there are alternative options that can often become solutions. 

By this time, I was ready to call it quits, the thought of a third infusion was more than I could take. My body was beat up, weak and just getting to the bathroom or getting up to get something to eat was a major ordeal. During the day, I could hardly get off the couch. One day lead into the next day and then the next.  

I called my son and told him I didn’t think I had it in me to finish the treatments. I talked to my oncologist and she said that two treatments were better than none and she fully understood how I felt. She said she could lower the dose of the two chemo drugs to see if it would make a difference. I told her I would think about it.

Up until a few days before the treatment was scheduled, I was determined that I would never go back to the clinic. This was in no shape or form what I call any type of living and I really couldn’t talk myself into going again. I was worried about how weak I was, my legs were unsteady all the time now and it worried me.  I called the clinic but my oncologist was out so they put me in touch with her associate.  She told me to double up on my pre-chemo medication so instead of three days, I would do six; she said that would help.  I had my doubts but I also don’t have MD after my name so I decided to go with her recommendation.

My sister the nurse came over and continued to extol the virtues of why I needed to finish my treatments, and she got my friends and my son to call and cheer me on as well. It was easy for them to say, not having to walk a mile in my shoes, but I understood that they all wanted me around in future years so in the 11th hour, I decided to proceed with my treatment schedule and give it a try with the lower dose.