Surviving and thriving

It’s Monday, which means it’s been four days since I last ate and three days since my surgery. I’m pretty amazed at how good I’m feeling. I was destroyed after my surgery in December, but this one, not so much. I am in a lot of pain and it’s been hard to manage, but there are valid reasons for that. I was on a patient-controlled pump for pain until this morning, so if I didn’t push the button every ten minutes, I’d end up in pain. I also had to get up every hour last night to pee, which left little time for sleep and added to the pain I was experiencing. I also have post-surgical hiccups — every time I go from lying to seated or standing, I have the most violent hiccups you can imagine. My stomach muscles aren’t happy.

But still, I feel pretty good. I gained 15 pounds of fluid between Thursday and Sunday, but lost ten last night when I had to pee every hour. (I know this is too much information, but you get used to sharing the gross personal stuff in the hospital.) Today I’ve started on clear liquids. My hospital roommate and I keep raving about the refreshing flavour of Nestea. Nectar of the gods, it is. We could be spokespeople. The nursing staff has been mostly amazing, too. The last three shifts of nurses I had were men, and one of them was cautioning me way too much. I know how quickly I can walk, and if I say the sheet behind my back is comfortable, it is comfortable and I don’t want it moved (it’s like when your mom tells you to put on a sweater because she is cold). I know his intentions were good, but I am so tired of people making decisions for me when they aren’t needed, or offering advice that’s not wanted. My roommate, who is wonderful, has one habit that drives me crazy, but which I know is just sweet concern. Every time I get the hiccups (which is at least once an hour), she asks me if I’m ok. Every time I tell her it’s the same thing — I get the hiccups when I sit or stand up, I’m fine, they’ll pass. Any time I have a problem, I call the nurse. My roommate is only trying to be helpful. I think it annoys me because it brings attention to the incredibly uncomfortable situation I’m in.

Also, I am made cranky by a lot of things right now. For instance (and I’m not trying to be ungrateful here), I am really tired of people telling me to get better soon. I know you all have your hearts in the right place, but the reality is I won’t get better soon. I’m going to have a stoma bag attached to my stomach for the next five or six months, possibly longer. I still have five chemo cycles to go through, and those will make me weaker and sicker as time goes by. There is no way to know how I will be affected by the final cycles, so I just want to focus on how I feel in each moment. I don’t want people to be maudlin about the situation. Yes, it sucks, but I am a lucky (not plucky, never call me plucky) cancer patient. I have amazing support from my friends and family. My healthcare team is tops. I work for an amazing company that accommodates my needs. So I don’t need people feeling bad for me.

This is something I don’t think I’ve explained well, though I brought it up a couple of weeks ago with my therapist. I feel guilty when people feel bad for me. And this is something that should make sense to everyone. No one likes to make other people feel bad, even when it’s done unintentionally. But lots of people feel bad that I have cancer and have to go through all this stuff. So imagine how I feel, knowing that there are so many people walking around feeling sad or angry on my behalf. I don’t need that and I don’t want it. So people, don’t focus on that shit. When I need a pity party, I’ll ask for it.

I hope that doesn’t sound callous. But I’ve had this same conversation with several people over the last few months, and it seems like I’m having it on a daily basis right now. It makes it really difficult to not spiral into feeling sorry for myself. I hate feeling sorry for myself, so I’d really appreciate if everyone would try their best to keep me from going there. I don’t mean to tell me to buck up, or to say that everything is fine. Just treat me like a friend. Tell me about something funny you saw on the street, or about the vacation you’re planning. Visit me with props so we can take funny pictures. Draw me a picture of baby animals or send me a postcard in the mail. This is what I want from my friends, this is how you can be useful.

And when bitching and complaining needs to be done, I will be the one doing it. Not you guys. OK?



About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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