Symptoms of having cancer and side effects of taking chemo can be so unpredictable and transitory and unexceptional that I find myself constantly wondering: Is this something?
I feel like a hypochondriac sometimes. But with a time bomb ticking inside me, and doctors that want to know every single bodily sensation, and a mother that still asks me how i’m feeling (it’s OK, mom–I know, you’re a mother), and side effects written all over my chemo bottles, and the “usual” things that people with cancer feel floating around the general discourse… I have to keep tabs. It’s just hard to tell: Is this something i’m imagining just because I know it could happen? Or, perhaps more importantly: Whether or not it’s real, does it matter?
When I was first starting to feel the symptoms that triggered my cancer diagnosis, they were so unexceptional that they could have been anything. I went to the doctor, but I didn’t really push the matter when my symptoms weren’t resolved with the pills I was prescribed. I could live with them. They were so minor and so ordinary that they didn’t seem like something. When the doctor who ended up diagnosing me said, at my second appointment with her, “I don’t think this is cancer, by the way.” I said to myself, “Cancer? What do you mean, cancer? Obviously this is isn’t cancer. I’m 25!”
Now that I’ve seen what unexceptional symptoms can be, I am hyper-vigilant. Especially because my oncologist said, “It’s usually the patient–not a PET-CT–that detects when the cancer is growing again or whether it has spread.” I’ve been tired–is this the fatigue that cancer patients so often complain about? I’m nauseous–or maybe i’m just hungry. I’m not hungry–could that be the chemo or is it my stomach being obstructed? But this is all just in my head. My oncologist always encourages me to call, but if I called every time I thought I felt something, I would be calling almost everyday. And I would be doing all these extra tests and appointments which take time, and cost money, and are usually annoying. So I end up doing triage on myself, but triage that is informed by very little knowledge or experience. I have reason, but: What do I know? My oncologist always asks if my feet are peeling because it’s a side effect of my chemo. My feet peel, but so minorly that it almost doesn’t seem worth mentioning. And it certainly doesn’t warrant a call. Except, he always says: “Remember: we only get upset at patients who don’t call.”
I’ve called three times that I can remember. Once, at the very beginning, at the nudging of one of my therapists, when I was throwing up every half-hour while fasting for a scan. Another time, the morning after I was sent to the hospital for a procedure where the doctor didn’t end up doing what I was sent there to have done. And this summer, when I was feeling excessively thirsty, I thought, from my chemo. I ended up just being sick, and not because my white blood cells were too low.
I have called so infrequently that now when I do, I think my oncologist must think whatever i’m calling about is a big deal. So I have to make sure I think it might be a big deal before I call. And calling, then, becomes me admitting to myself that something might be amiss. It’s me acknowledging and opening myself up to the worry that nags at me even when there’s nothing specific to worry about. It’s me saying, things are good now but they might get worse. It’s me saying: This isn’t my imagination. This is something.
But what do I know?
i am a liver 
What a tough decision, but one that I think becomes inspiring in the last paragraph when you discuss “opening [yourself] up to the worry….” Whether something actually is amiss during those times when you admit to yourself that something might be amiss, or whether something isn’t, acceptance of your one’s own worry is incredibly difficult. Worry can be debilitating, paralyzing and deceptive, whether or not one has cancer. Owning that worry and acknowledging the things that concern you can help you pass through it. By acknowledging it one of two things occur: you discover either that your worries are unfounded and you move past them, or you have more information to help you take action on the cause of the worry. It must be tiring, though, trying to figure out when your body is crying wolf.
I totally know what you’re talking about. Things are fine now, but I’m always wondering what is the cause of this feeling/experience? What will be the effect of this choice to eat/sleep/exercise/drink/stay awake/watch TV/talk to this person/avoid that person, etc.? Am I not sleeping because I’m depressed, or am I depressed because I’m not sleeping? The last time insomnia was my big question, my therapist, psychiatrist, and I all had differing opinions, but we had to take one action and see what would happen. It ended up that it was a combination of the two and what we did worked. (Yay!) I too, don’t want to tell them I’m having trouble right when it starts because I want denial to work; I want to just be sleepy, or just have a bad night, or just… But, it usually turns out that I’m not “just” imagining things or worrying too much. Usually, when I get to the point of wondering enough to write about it the best thing is to call the doctors about it. I also know what you mean about rarity of calls possibly worrying people more when you do call–but that’s what they’re there for. My husband Justin, an ER doc, gets more frustrated with people who don’t tell him EVERYTHING right away, therefore leading him down the wrong path or delaying their care. I’ve rarely heard him complain that a patient gave him too much information.
you are not exceptional if you either suffer or imagine that you are going thru a particular feeling/sensation……its very human and a normal reaction. there are people who can just switch off from a worry and relax when they realise that there is nothing they can do, at that moment at least. but these folks are blessed who can worry at the moment of their choosing, they are in minority though. i too suffer from NET mets in my liver, primary being in the rectum, which has been excised. liver mets have not led to carcinoid syndrome as yet , since last 3 years and as yet not spread elsewhere. the treatment i have gone though is one cycle of chemo embulisation of 3 big tumours , followed by 6 cycles of PRRT with Lu 177 isotope at 3 months interval over last 18 months. now i am being prescribed chemo drug, affinator 10mg, once a day for 3 months. its bloody expensive drug. has anyone used it till now and how were the results against NET? can somebody please advise me, istill dont have any symptoms , but chromogronin is becoming higher and MRI shows slight increase in tumour size in some of the 9 tumours i have spread across lobes of liver. surgery is not an option. thanks
Hi, what were the initially prescribed pills you mention? I mean heat was the first symptom to go to the doctor for? Thanx and carry on