A while ago I my sweet cousin, also living with advanced cancer, posted a link to a story about what it’s like to be chronically ill. As she’s someone I really admire, and it’s a subject that touches us both, I read the story, and much agreed with the author's points. Only after a few days, I realised I was still thinking about it, adding amendments and removing some bits in my head. So here’s my revised version of what it’s like to be terminally ill instead.
You always feel like a burden. Well, technically your illness is the burden, but after a point it becomes very hard to differentiate between yourself and your illness. Obviously I don’t believe that I am the cancer, but having cancer becomes a part of who I am. The cancer is a sorrow unto all our lives, and I’m the one who has it.
Also, practically, I’m always more or less of a burden to others. When my bones ache and I see the pain in the eyes of my loved ones, reflected, magnified. I want to tell them it’s not so bad, it’s just physical, but in this, it’s as if we don’t share a common language, they don’t understand, our experiences have made us unable to understand each other. I find that there are lots of things like that, that I cannot explain.
The feeling of being injected with Natriumchlorid was one of the earliest. I found that I hated the experience, and tried to explain: “It’s like a horrible smell under my skin, but it’s a smell I can taste.” That didn’t do much in terms of understanding each other.
You are literally living other people's worst nightmare. Even most other cancer patients worst nightmare. Healthy people spend quite a lot of time and effort trying to be admired - whether it's for their looks, clothes, home, carrier or love life, the goal is to be successful. That option is beyond not available to you when you're terminally ill.
You have a whole set of dreads and horrors completely real to you that you can’t talk to anyone but your therapist about. As my father asked me if he could take my oldest son to Israel, I inadvertently blurted out “Can you not wait with that until I’m gone?” That did not go down well, I’ll tell you. People know what’s to come, but we can’t really talk about it.
Most of the time, you’re in pain, and you know it’s just going to get worse. And a part of you is forever checking, measuring, to try to judge how much you can take, how long you will be able to go on.
When you feel neglected, your first thought is: “It’s as if I’m already dead”. Yeah. That one’s hard. And unless you watch your thoughts constantly, it’s really easy to feel neglected.
You can't ever really be honest with people. "What are you thinking about?" is a question that shouldn't really be answered when the answer is likely to be "Oh, I'm just trying to imagine what my funeral is going to be like". Its a bit of a conversation killer... Or, being terminally ill means having the most rigid self control ever, to not think about those things.
There is no escape. At one point a friend of mine blurted out “I can’t do this cancer thing 24/7!” and while I really do get that - there are no options for me. I have to live with the cancer thing 24/7. And while healthy people can have great hopes and dreams for the future, the only thing you hope for when you’re terminally ill is a cure. A cure to be developed before you die. All the other dreams, you’ve already had to say goodbye to. So when people talk about how they plan to buy a house, in my mind I’m thinking about the house dream I had to let go of.
But here’s the thing. Being terminally ill makes you strong. I thought I was strong before this, and that was nothing - nothing - compared to this. And it makes you good at being weak. It makes you a better person, and it makes you great at living in the here and now. And while I appreciate all those perks, all I really want is a chance to watch my kids grow up. You can have the new house, or the great car. You go on the trip to the Maldives, dive with dolphins or get the great book contract. I won’t mind, honestly, if I can just please, please, get to see my kids grow up. There is no joy, no wonderful moment, no second of any day that isn't tainted by the horrible, all-engulfing sadness of leaving my family.