In reading the chapter ‘The Cost of Appearances’ in Arthur Frank’s (1991) At the Will of the Body, reminded me of my first Doxorubicin (Adriamycin other wise referred to as A chemo) chemotherapy injection. I wrote about the experience very briefly in a post The First Day Of Chemo on my blog. In my blog post, I failed to mention two things.
The first reflection was that my husband wasn’t with me when the nurse came to give me that particular infusion. The social worker had come for a visit and my husband went off to talk to her. Somehow, with four AC chemo infusions, my husband was not there for any of the A injections. Doxorubicin is pushed into the veins by the chemo nurse. The rate of injection is closely controlled and the patient is monitored closely throughout. For me, the process took about 10 minutes, as I didn’t have any immediate problems with it. Some people experience immediate heart issues, which is what the nurses are watching for.
The second reflection was that up until the point of the A infusion I was doing fine. I had taken some premeds (mostly pill form steroids) and had a saline drip running through the hose that led to my port. When the nurse came with syringes filled with the ‘red devil’, which is what Doxorubicin is often called because of it is red, I was hit with an intense emotion. I began to cry. Immediately the nurse drew the curtain. This is what I was remembering when I read the chapter on ‘The Cost of Appearances’.
Even though emotions are allowed to happen, and respected, they are also hidden. In the shared infusion space, if the person is happy and chipper the curtains remain open. The room is a large space shared by several other people also going through infusions. But the moment you start to have an emotion that is seen to be negative, the curtain is drawn. You are ‘given your privacy’ but this is more about being hidden from the others in the room. Negative emotions are not allowed to be shared in the communal space – you are only allowed to share the positive emotions.
This need to only share the positive means that patients feel the need to always be putting on a positive face. It denies them the opportunity to express the true emotions that they may be feeling. Sure, there were times when I was genuinely in a chipper mood. Most of the time my outward emotions echoed my inner emotions – but there were other times when I was scared and yet the fear was not validated. Expressing it was hidden from others, such that others who may be experiencing the same fear are not permitted to see that it is normal – that others have that feeling too.
It seems to me that today I am hearing more about the lack of validation of feelings. Beth also blogged about it today in her post I bet you are glad you beat cancer. Fortunately, for the most part my care team does validate my experience. I blogged about my recent oncology appointment, where my oncologist validated that my crazy hormonal mood swings were real side effects, and we put a plan in place to do something about it. The validation alone made me feel a lot better.