You know what? When you’ve been told terrible things are going to happen, you kind of just wait for them. My nurse had told me that the particular drug that I am receiving has most unpleasant side effects, so I figured I was ready for this.
The first day after chemo was a huge surprise. I felt pretty good and ran around the house doing all sorts of chores. Wow, this felt okay!
And then the next day arrived – I’ve worked so hard to describe this and don’t know how to tell people how I feel. And if I do, I feel like a complete whiner because I could go on forever about it. Sick, so sick. The thing is, it doesn’t go away. There is no ebb and flow, there is no break, it is just there.
One of the things I didn’t talk about when I described my chemo experience is the feeling that everyone is in the same situation. Now, I know that we are all at different stages, have different cancers, will have different outcomes, but there is something about the fact that we all have cancer that is a bond. I don’t know if it’s a good thing or not, but for me, it’s a real feeling. Now a friend of ours who went through his own cancer experience said that he felt no kinship with anyone while there. He told us that it made him feel sad and down to be in the chemo suite. Of course, just being there brings all sorts of conflicting feelings – sadness, fear, trepidation, physical unpleasant feelings and pain as well. He said he was almost unaware of the others in the room. For me, it is quite different; it brings me hope and as I said, some kind of a feeling of kinship and not being alone in this.
The reason I’m saying this at this moment is because living with the aftereffects and side effects of chemo makes me feel completely alone. I don’t for a minute mean that people don’t want to help and offer me assistance. They do, but I don’t know what to tell them. I feel nauseous almost all the time, I now have a mouthful of sores on my gums and cheeks, I have constant headaches, I don’t want to eat and one more massive side effect I will talk about in a minute. All of these things were described to me before and during my treatment but it’s sure not the same as living it.
The worst thing for me is the fatigue. I don’t know that I ever knew the true meaning of the word. I think for me it always meant tired, but this is different. Every part of my body is too heavy to hold up. My head is too heavy, my arms are too heavy, it’s too much effort to lift myself off the couch, and just thinking about doing something, anything is just too much. As I said, I think I envisioned tired and I am that, I want to sleep quite a bit, but it’s different than that, it’s more than that. I think about moving but it’s so much work and it hurts.
I knew there was a cycle to this. I understood that there is a few days post-chemo when you feel dreadful and then you slowly climb back up to having strength again in time to have the next treatment. It has been somewhat like that but the worst part is that I get fooled into things. On a day when I think I’m feeling not so bad, I think, “okay, I can do this thing and maybe this thing, and make and have a good meal” so I try to do the first thing. Immediately, my body says oh I don’t think you will and I’m back on the couch. Showering and getting dressed is so much effort and I absolutely feel like I should but many days I don’t.
My daughter and husband are truly remarkable. They listen, they help, they encourage me to go with them, perhaps just to the store or out for a bit. And yet, even with these most caring people and the ones who check in with me, I feel so terribly alone. It’s not anything that they do or don’t do, this is internal. I don’t quite understand it but I’m going to work on it.
Today is ten days post treatment and today is not a good day. I really thought I would feel better by now. I have four more days until the next session so I’m working in my head trying to find the things I’m going to do to make this better than it is.
