Today as I was going in the front door of the cancer centre, I took a mask from the dispenser and tried to move out of the way of the entrance so I would not interfere with others as they walked Through the doors. I knew it would take a few minutes to juggle my bag which contained all that I needed for my session (book, botle of water to take my pre-session pills, a cookie to take with my pills, my wallet with my health card and phone), and then put on my mask under my chemo scarf and over my glasses without ripping off my scarf. I said to the volunteer standing by the door, “they don’t tell you that your glasses don’t fit the same when you lose your hair”. She replied, “no they don’t but maybe it helps a little to know you’re not alone”. And she’s right, it does.
It also happens that today I did an impromptu inventory of the changes in your life that cancer brings; how many things you do differently, don’t do at all or do new things instead.
Here’s what I came up with:
- How and what you eat and/or cook: what I have learned works for me is to eat as my body tells me – and it really does tell me. I seem to know instinctively what I want to eat and whether or not I want to eat. It changes from day to day and maybe hour to hour. The really frustrating thing for me is the whole cooking thing. I have always liked to cook and bake and I do so in the same way my mom did; I’m a ‘from scratch’ cook. I am not only not a ‘from scratch cook’ at the moment, I’m a ‘don’t want to cook at all’ type. The doctors tell me this will change after chemo but it all feels really strange for now.
- Grooming, clothing and dressing habits: the first thing is that I have to make myself get dressed every day. It would be so easy to just stay in my pajamas and so many days I do want to do just that. Now, having said that, there are at least twelve days per month that I am either at the hospital or the clinic so getting dressed is mandatory. When my hair first fell out, I wanted to wear my wig and thought that it would be the ony acceptble way to be in public. That has changed so much – I am so much more comfortable with my chemo scarves. Often, as we are leaving the house, I ask Vic if it looks okay to go out with. Yesterday, I was wearing a new one (because I can’t stop sewing new ones!) and I asked him how it looked. As he always does, he says fine and mentiond that it was a happy colour. I asked him if he thought it made people uncomfortable to see it. He said maybe for some and do you care? I realized that I really didn’t. That’s a new feeling for me and I’m okay with that. Getting showered is a trial and I have always thought of it as pleasure. I’ve made myself a shower sleeve to protect my picc line when I shower and even though it’s there, I have to work very hard not to get it wet.
- Everyday household tasks: the biggest thing about considering which household tasks I’m going to do each day is checking o see how tired I feel. The fatigue is real and gets in the way of so much. Doing dishes means making sure that my arm does not get wet and it’s not that it’s such a big deal, it’s that it’s one more thing to think about. Doing laundry is fine but I’ve found that carrying it down the stairs is fine because it’s in my left hand but on the way back up again, I need to use my right hand as I’m using the left to hold the hand rail (a necessity) and I can’t carry the laundry with my right arm (the picc line arm). Yesterday I decided to do just a little bit of vacuuming and today my picc line is a little red and a little sore. I saw the oncologist today and she reminded me that she told both myself and my husband tha vacuuming was not on my agenda for now. I’m not good at asking for help and also not good at not doing, so it is frustrating.
- Physical and emotional changes in my body: for sure I’ve written lots about the changes, the aches, the pains, the nausea, the fatigue. Those are the ones I knew about and expected. I’ve found that there are many more side effects that I didn’t know about. Today, I have to tell you about the new ones. I was warned about the mouth sores but this is one of the difficult side effects to deal with. Yes, there are small sores in my mouth, but also, it feels always like my mouth is coated with something. Actually, it feels like a dust coating – Vic asked me how I knew what dust tasted like and I told him, I just do. Also, swallowing is dreadful. When I swallow it feels like I’m swallowing over a large lump with razor blades in it. When I swallow food, it is much, much worse. This starts about four to five days after each chemo treatment and lasts about a week. That means that it gets a little better in time for the next treatment. I was telling the oncologist this morning that my nose runs all the time as well. When I say it runs, I mean ALL the time. It is constant and it drips everywhere. I know that creates an ugly image, but it’s true. She explained that this happens because there are no nose hairs in my nose. Oh yeah, I hadn’t thought of that!
I’m not writing all this for sympathy. I just think it’s interesting that I thought I knew what to expect but I really didn’t. there are no aspects of your life that are not affected. The mood swings I’ll talk about another time. oh yeah, for sure……………
