This post, is partly inspired by a Twitter friend. She posted that having cancer means you can sleep for 20 hours and still wake up tired. Her husband, said to her, “oh, you’re just lazy.”
To me, them is fighting words and a total asshole thing to say.
I don’t know her husband, and I only know her from Twitter, but it seriously broke something in me that the person that should be the most supportive and understanding in her life is being an asshole to her.
Cancer/ chemo fatigue is a real thing.
We’re not being lazy, we literally don’t have the energy that we used to have. We may still want to do things, we just can’t.
I wish I could explain chemo fatigue in a succinct way.
Fatigue sets in at the infusion chair. The first thing you get are steroids and then something to keep you from vomiting while you’re sitting in the chair. Then comes some saline or a sugar water solution depending on the mix of chemo that you’re getting.
Then, come the big guns. You start to get the infusion and almost immediately, you want to sleep. The infusion room is usually very quiet, save for a TV on a low volume and that’s because most of the people in the chairs are sleeping. No matter how hard you fight it, you will fall asleep, even if just for a few minutes.
After your time is up in the infusion chair, you get to take some of the chemo home with you, in a little ball pump that you have to wear on your waist until the pump runs dry 46 hours later. Yes, for me, the chemo infusions take essentially 2 days to complete.
While you have the pump, you can’t really do much of anything. You can’t go outside because the sun hurts on your skin. You can’t really do anything terribly physical because you’ll end up vomiting or the pump just gets in the way. So, you sleep, or become a “bump on a log” and just wait out the infusion watching TV from the couch or your bed. You literally, only have the energy to go from your bed to the couch.
Then, for the next 9-10 days, you’re knackered and on day 14, you go back for another infusion. If you’re lucky, the chemo drugs kill more bad cells than good cells. If you’re not lucky, the chemo stops working altogether. Regardless, you feel the effects. I won’t go into details about the pain, but this shit hurts in ways that you never experienced or thought that you could hurt like.
Not just physical pain, you also mourn the life you’ve lost. You mourn not being able to get out and do things whenever you want. You miss working (*maybe not that much this one), you miss being able to make long term plans, you just don’t know when your timer will run out. You mourn the things that you’ll miss like your kids marrying or graduating from college/ high school. You mourn everything that you won’t be able to do. You mourn not being “present” for events because you’re so tired that you either can’t go, or you space out while there and not realize what is happening around you.
It’s one thing to know that you’ll die “someday” but it’s a whole different ball of wax to have something inside your body that is actively trying to kill you and actively making life difficult for you.
I’ve been hospitalized with life threatening conditions 4 times since July 2020 when I was first diagnosed. I’ve been stubborn enough to not die, but I know that there will come a time when I won’t be able to fight it off.
Life goes on though.
Life for other people doesn’t stop because you’re sick. Other people have life events, and you can try to participate in them and make some good and happy memories. Even with being positive and having a good outlook on life, cancer is always there. Looming in the shadows, waiting to strike when you least expect it.
For example, the weekend of the 15th of June, I’m supposed to go to a wedding. It’s the wedding of one of my wife’s cousins and the entire affair has been affected by COVID and COVID related restrictions.
The thing is, on the 15th, I have chemo.
I don’t know how I will feel on the wedding day. I don’t want to torpedo my wife’s enjoyment of her cousin’s wedding by not going and/or by being miserable and “not present” at the event. She’s been involved on the planning and a few other functions related to the wedding and I want her to have a good time there, I just don’t know how I’ll be on that day.
When the wedding was originally scheduled, the weekend in question would have been my second weekend off chemo, so I would have been relatively OK to attend and be present. My chemo weeks changed because of reasons and so now I have this conundrum.
The venue is about 15 miles from my house. In theory, should push come to shove, I could either get driven home and dropped off, or grab an uber or something like that, but I feel that either option will be disruptive. The city where the wedding is at, does not have any hotels. You either get an Air BnB or nothing, and the Air BnBs are expensive af.
So, here I sit, just writing this stuff out because writing it out helps me process things I guess.
I’m not feeling well today. I’m nauseous and in pain. I haven’t had chemo in almost 3 weeks now. Next weekend will be rough but I will maximum effort it and see where I land.
Even if that means that I land in the minivan, asleep in one of the back seats while people party up and celebrate the nuptials. If someone says that I’m being lazy for needing to nap or for excusing myself from the festivities so I can rest, well, this may be my last post as a free man, because I will throw down with a fool that talks shit to me. I don’t care if I lose.