I Miss Being Spontaneous
Illness turns ordinary plans into calculations: energy, bathrooms, medication, transportation, nausea, appointments, and how much of tomorrow I will have to sacrifice for doing something today.
I miss being spontaneous. That sounds like such a small thing compared with cancer. People hear the word cancer and think about the big things: treatment, survival, scans, oncologists, whether the drugs are working. Nobody really talks about the fact that eventually you can’t even casually agree to lunch without first wondering how far away it is, how long you will be there, whether there is a bathroom, whether you can drive yourself, whether you will have enough energy to get home, when you last took your medication, whether you can eat, whether you are going to throw up, and whether you have something nearby in case you do.
These days, there is usually a bucket somewhere close by. It has become part of the room in the same way a lamp or side table might be, except considerably less decorative. I barely notice it anymore until I catch myself moving it closer before I sit down. There are things you never imagine becoming normal, and then one day you realise you have developed a preferred location for a bucket.
The truth is that I barely make plans anymore because I have absolutely no idea what condition I am going to be in when the day actually arrives. My circadian rhythm is completely destroyed. Calling what I have a sleep schedule would be generous. I might sleep during the night, or I might finally fall asleep when everybody else is waking up. I might lose half the next day because nausea kept me awake, or I might be completely exhausted and still somehow not be able to sleep. There is no reliable pattern anymore, which makes planning something three days from now feel almost ridiculous when I cannot reliably predict what I will be capable of doing three hours from now.
I used to make plans anyway and hope for the best, but after enough last-minute cancellations I stopped wanting to put myself or anyone else through it. There are only so many times you can say, “Sorry, I can’t make it,” before you start feeling like an unreliable asshole, even when you know perfectly well why it keeps happening. So now most things are decided on the day. Sometimes a few hours beforehand. I don’t particularly like living that way, but it is more honest than promising something my body may not let me deliver.
The hardest consequence has been my family. I haven’t spent nearly enough time with my son over the last couple of years, and that bothers me more than almost anything else about this whole mess. I can explain why. I have been sick, exhausted, nauseous, sleep-deprived, dealing with medications and appointments, and going through stretches when simply getting myself organised feels like an unreasonable amount of work. The explanation is completely legitimate, but it doesn’t give me the time back, and it certainly doesn’t make me feel any better about losing it.
Two years goes by quickly when you are an adult, but two years is enormous in a child’s life. Kids grow, change, discover new interests, develop opinions, and become slightly different people right in front of you. I know I didn’t choose to be sick, but I am still angry about the time I have lost with him. Cancer does not stay neatly inside the part of your life marked “medical.” It gets into your relationships, your routines, your independence, and eventually into the way you think about your own future.
I know why I haven’t been there as much as I wanted to be. Knowing why does not give me those years back.
My social life has pretty much disappeared too. I don’t really have friends I spend time with anymore. There are no spontaneous dinners or casual visits, no deciding late in the afternoon that it might be nice to get out of the house for a while. My world has gradually narrowed to places where I know where the bathroom is, where I can lie down if necessary, and where nobody is particularly surprised if I suddenly announce that I feel like I’m going to throw up. Home is difficult to beat on those criteria, which is not exactly how I imagined choosing where to spend most of my time.
Then there is my mother. I rely on her far more than I ever expected to at this point in my life, and she is in her mid-70s. She should not have to be worrying about whether her adult son needs groceries, needs something picked up, is too sick to drive, has managed to eat anything, or is sitting beside a bucket waiting to see what happens next. She already did the raising-me part. She should not still have this much responsibility for keeping me functioning.
I am incredibly grateful that she is there, but gratitude and guilt can exist at the same time. I don’t like being dependent on her. I don’t like that she has to worry about me, and I don’t like needing help with things I once would have handled without giving them a second thought. Illness has a way of stripping away independence in small pieces. It usually doesn’t happen in one dramatic moment. One day you just realise that things you once did automatically now require help, preparation, or a quick assessment of whether you can physically manage them at all.
One of the strangest parts of this entire experience is that before I started treatment, I did not actually feel sick. I had cancer. I knew I had cancer. My mycosis fungoides was getting worse, my skin was breaking out, and I was developing open sores. Treatment was not optional anymore, and I understand that. Something had to be done. The bizarre part is that physically, aside from what was happening to my skin, I generally felt pretty good. Then we started treating the cancer, and that was when I started feeling like a cancer patient.
There is something deeply frustrating about that. You spend most of your life assuming cancer makes you sick and treatment makes you better because that is the simple version of the story. The reality can be considerably messier. Sometimes the disease is doing damage while you still feel relatively normal, and the treatment designed to control it is what makes you feel terrible. I understand why the treatment is necessary, and I am certainly not suggesting that I should have ignored mycosis fungoides until it became worse simply because I happened to feel okay. Understanding the logic does not make the day-to-day reality any easier to live with.
The plain truth is that I felt healthier with untreated cancer than I have while treating it. That is a bizarre sentence to be able to write, but it is also an accurate one. I am angry about what treatment has cost me so far. I am angry that seeing my son depends so much on whether my stomach is going to cooperate. I am angry that I think about bathrooms before I think about whether I actually want to go somewhere. I am angry that transportation has become a medical question, that sleep happens whenever it happens, and that my mother has been pushed into part-caregiver status when she should simply get to be my mother.
And yes, I am angry that there is usually a bucket sitting somewhere within arm’s reach. There are moments when the absurdity of all this becomes funny simply because it has become so ordinary. Medication on the table. Boost shakes because solid food is still a negotiation. A bucket nearby. Appointments written down because there are too many to remember. My sleep spread across all twenty-four hours with no particular respect for what the clock says. At some point it all stops looking unusual and just becomes the way the house is arranged.
The spontaneity I miss is not some grand adventure. I don’t need to suddenly fly to Paris, go skydiving, buy a motorcycle, and rediscover myself somewhere in the desert. I would just like to wake up one morning and decide to do something because I want to do it, rather than first checking whether my body is prepared to cooperate. I would like to call my son and say, “I’ll see you tomorrow,” and have that sentence end there.
I would like to get in the car simply because I feel like going somewhere. I would like to visit somebody without mentally locating the bathrooms along the way. I would like my mother to be able to worry about ordinary things instead of worrying about whether I am okay. I would like a day out to be a day out, not something that has to be weighed against nausea, medication, exhaustion, transportation, pain, appointments, and how long it may take me to recover afterwards.
I would like to say yes to something without first calculating what it is going to cost me.
That is one of the things illness takes that people don’t always see. It doesn’t only take health. It takes reliability, confidence, routines, independence, family time, and friendships. It makes ordinary choices conditional. Eventually you can become so accustomed to checking what your body will allow that you forget how effortless those choices used to be.
I haven’t stopped wanting to live my life. I just miss being able to live some of it without having to calculate the cost first.
I really, really miss being spontaneous.
tags: Daily Life, Side Effects
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