You look so well!
You look so well! It's what a lot of people say to me.
I never quite know how to react. I like that I look okay. But in fact, I do look different from Before. I have swollen cheeks from the steroids I'm on. I weigh the same but my abdomen is a different shape. I have swollen, fluidy feet, I don't know why but there it is. My eyes are dry, and a bit yellow. But I don't look like " a cancer chick", with bare head and sunken cheeks.
What do I say?
Thanks?
Or. "thanks, but I feel crap"?
or .. "great, but are you telling me I'm not really sick?"
I dunno.
The fact is, I am mostly around people when I am feeling okay. When I'm not feeling okay, I don't see people. So.. if you see me, I'm probably made up, dressed, and feeling relatively "normal", and then wham suddenly I don't feel okay any more.
Mostly I accept the compliment as it's intended, but I am playing the part of a normal healthy person. Sometimes that takes more effort than I really have. When my visitors leave, I'm exhausted, I can't do anything more. I act like I'm okay, but I'm not. I act like I'm not frightened, but I am.
I act "as though I'm Alinta from Before", but I'm not her any more. I have much less energy, and i must carefully measure out what I spend it on.
Before I go out, I must calculate how far it is to drive. I can't drive far.. I might suddenly be overcome with exhaustion and turn into the equivalent of a drunk driver. I can't walk far. About 150m before I need a sit down. About 300m before I need a long sit down (as in a coffee somewhere). I force myself to walk every day, if I can, so that I can maintain muscle strength, and just to get out of the freaking house.
Sometimes that's too hard and I drive to a coffee shop near where I live, merely 400m away. If where I'm going is a long way away, I need to work out how to get there. Whether my partner can drive me there, or whether I can cab it, or what. Cabbing it in itself is a major effort. I have to wait at an intersection or on the street, using up energy. Or call one and wait,, using up more energy to wait.
Clothes. If my feet are swollen, most of my shoes won't fit. If my stomach feels bloated, which it often does, which clothes will be okay? How long will the outing last, and will I be okay to do whatever else is needed that day afterwards?
Then.. since I don't look sick.... how do I get people to give me the consideration I need? I need to walk slowly. I need to sit a lot. Sometimes, I need to not be chatting or interacting with anyone.
I may plan to do so and so with you next Thursday but how do I know I can do that that day?
People drop around.. expect to stay a couple of hours or three. I need to throw them out after one hour. It feels like not very long. It feels rude to throw them out. But if I don't, I use up all my energy for the day. Sometimes, when they're asked to leave, they spend half an hour leaving, talking to Julian "but how is she really?" as if we hadn't told the truth before, and "how are you really?" when he's already said that as well. Sometimes, people don't seem to think we talk to each other with honesty, which is odd.
I have to live differently from Before. I have to think about each day's energy, how much will I need to achieve what I want to do that day, and how much energy I'll need tomorrow. To attend an evening party, it takes three full days.. sleep the day of the party. Recovery the following two days. And don't tell me "It takes me time to recover as well". I know what that used to feel like, and this is DIFFERENT. Harder. I am literally unable to move or talk to people for two full days. You can go have coffee the next afternoon, and hold your head and say gosh I have a headache.
Getting dressed takes a massive amount of energy. Sometimes I need ten minutes to sit and recover from the effort of it.
Medications. I must eat at certain times so that I can take meds. Not eat at others to take other meds.
Monitor my symptoms, so that my doctor can see what's what.
I can't stand it when people give me advice about how to "fix my cancer" by taking this or that supplement or tea. Right. Because if a tea fixed cancer, you don't think they would be selling that stuff in every shop?
I can't stand it when people tell me to "Battle on" or "fight on"... you know what? The cancer I have cannot be cured. No amount of fighting or battling will change that. I'm taking the meds I'm given, and doing as my doctors tell me to, and that's the extent of "battling" that can be done.
I can't stand it when people say "If anyone can beat this, you can". Wrong. No one can beat this with current medical knowledge. There is not a cure coming within my expected survival span, even if I'm "lucky" enough to live the longest potential span there is with this condition, something possibly 1% of people do. My prognosis is a median of 18-24 months from diagnosis, which was last July. If can deal with it, surely you can? Thanks.
I don't like feeling like I have to act as though I'm healthy when I'm not.
I don't like feeling like I have to act the way people expect a sick person to act.
I don't like people talking about me behind my back, as though I'm not fully cognisant of my own condition.
i don't like that I look well, so that people don't take my sickness into consideration.. for instance my tendency to overreact to things emotionally.
I don't like it on those occasions when I do look sick. Yech.
I don't like thinking about the fact that I'm dying. But I hate it more when people act as though I'm not.
I hate that I'm leaving my partner to live his life without me.
I really really hate it when people say.. everyone is going to die. I'm going to die too. You could get hit by a bus tomorrow. You know what? Yes, you're going to die, but you can push it out of your mind as a "one day" thing, in 20 or 30 or 40 years. My bus is at the end of my street, with my name on its front, gunning the engine and heading directly for me, NOW. Yours is coming, but it's a long way away.
Let me tell you. I've been in your position, where that bus was a long way away, and I know how that feels, and this is different. If you know that your bus is there, and you are going to die in the next 1-2 years? It changes EVERYTHING. EVERYTHING in your life.
What would you do with your life if you had two years to live, I once asked people. The answers were really stupid. They assumed that the two years would be lived in good health, and certainly in my case, that's not how it is.
I don't like it that no matter how hard you try, you'll not be able to understand how hard it is to measure your life in terms of how much energy you have.
I really can't stand it when someone says.. oh yes, I feel sick too, I have this terrible headache. I will sympathise with your headache but do NOT compare it to what's happening to me. I have been where you are, and I know that it's different.
I both like and dislike it when people tell me I'm brave and strong. That's what I want to show people. But when I'm alone, or with my inner circle, I am not brave or strong. I fall apart, I'm weak, I cry, and I'm emotionally very fragile. I show brave and strong to everyone else because I want to at least live part of my life as though I'm okay. For a while, I can pretend things are normal. For a while, I can be the person I was Before. I don't want my life reduced, even though it has to be.
Each day can only have one or at most two Things in it. One outing, or one piece of effort is one "Thing". I can go have a coffee somewhere, and have one visitor. That's it. After that, I'm pooped, no fun to be around. But I want to decide what those Things are. Don't decide for me. Don't patronise me. Don't cut me out of decisions.
When you ask, "how are you?" I have to work out what to say, how much you really want to know. The usual answer is "Okay, considering" and if you want to know how I really am you need to ask again. The answer is going to be long and probably far more detailed than you want.
Do I want every conversation with everyone I see to be a long detailed answer to "how are you"? No. But neither do I want no one to ask, and more importanlty, no one to listen to my answer. Perhaps there's a medium answer there somewhere.
And there are so many things I like.
I like that so many of my friends are there for me. They call me up, they don't expect me to call them so much, and are happy to make the running to stay in touch with me. I love that. I like hearing from them, even if sometimes I don't have the energy to talk or make appointments to see them.
I like that so many of my friends will do whatever I need them to do. Take me somewhere, go shopping for me, or do things to take the load off Julian's plate. He is, after all, doing everything I used to do plus everything he has to do, plus more.
I like that I am surrounded by so many loving people, who are getting it right, and who listen to me, and who can cope with the vagaries and contradictions I have set out here.
I like that my friends will not pussyfoot around pretending that I can battle this, survive this, that they will acknowledge the reality of what is happening to me.
I like that i have wonderful medical people around me who go the extra mile to care for me.
And it sucks, it totally freaking sucks that I am going to die, and that the number of my age when I do is likely to begin with a four.