Most people may not know that chemotherapy isn’t just a treatment for cancer. It can be used in a lot of medical settings – including autoimmune disorders.
I’m being treated with two chemotherapy drugs, a weekly tablet called Methotrexate and a 8-weekly infusion called Remicade. Here’s some info about the use of them for autoimmune disorders, the example being Crohn’s Disease.
The first time my rheumatologist suggested I might benefit from these drugs, I felt extremely resistant. Chemotherapy is, for want of a better description, poison. There’s something so counter-intuitive about making myself more sick to try and get better.
But it was more than that. I felt undeserving and plain weird about getting chemotherapy when I don’t have cancer. I didn’t understand how this fit into my narrative. I wondered if people would think that it was overkill or be really confused as to why I was having this treatment.
I didn’t know much about the side effects of chemotherapy before I started treatment – only those that get the most screentime, like throwing up and losing your hair.
One of the main ones that never gets talked about is depression. I can be feeling fine – or as fine as I get – before my Remicade infusion, which takes 4ish hours – and by the time it’s done, I’m a mess. Last week, I actually yelled and swore in the hospital. I never do things like that. My mood had bottomed out, I was extremely frustrated because I wanted to go home and the drip kept kinking up and it was taking forever, and I just felt like I wanted to die.
This is the same thing that happens following my Methotrexate dose, which sucks, because that’s every week. I take it on a Wednesday night, and by Thursday afternoon I’m capable of little more than hanging out in bed and attempting very low-impact distractions like watching TV shows. Nothing sad, nothing dramatic, not even a movie because that’s too much emotional investment. I’ll be lucky if I can carry on a conversation.
Then there’s the physical side effects – heavy fatigue, nausea that’s at times intense and at times just days-long vague sickness, headaches.
And still, the guilt. Because while these treatments might be poison, they’re also expensive, difficult-to-get medicine that might actually help me. I don’t know yet. The negative side effects start straight away (because of course they do) but any benefit might take up to three months to show, and I’m not far past that mark with Remicade. I’m only at week four on Methotrexate. So I have to suffer and wait and see, and it may well be that the suffering ends up being for nothing. Not to mention that the benefits might be happening inside my body – ie, the progression of my disease slowed or even stopped – but I won’t necessarily feel that. I could still feel just as tired and sore and sick, even if the drugs are working.
But I have to be grateful. I am getting access to this treatment, when so many don’t.
I have spoken about this to a friend who had cancer, and had chemotherapy, and got well. And now he has a chronic illness. And while it’s kind of dangerous to compare apples to oranges, he says that cancer was easier. Every time he had the treatment, there was less cancer to treat. And eventually, he got well. But chronic illness isn’t like that. He says it’s much harder to live with than cancer. “It’s so hidden, there’s no hope/goal/future. It’s way more miserable than cancer.”
That’s kind of awful to think and probably depressing for you to read and maybe other people who have or have had cancer feel different. But I understand why he said that.
Chronic illness is so often hidden. There’s no fundraising drive that I’ve ever seen for Ankylosing Spondylitis. Most people have never heard of it. I do have hope and a goal – getting more well than I am currently – but a “future” is hard to picture because it could be that that never happens, chemotherapy or not. Miserable kind of sums it up.
Even right down to the fact I feel like I don’t deserve the treatment I’m getting because I’ve convinced myself my illness doesn’t count.