Bye bye Lord Xeloda
Monday and Tuesday this week I was utterly, totally zonked.
You may think you know how zonked feels but, unless you've had cancer, or chronic fatigue syndrome, you Do. Not. I have been you, remember; I've had tired. I've had exhausted from working all night and playing all weekend and needing a day to sleep and recover. I've had big emotional upsets with a week in another city working 14 hour days and flights. I've had horrible flu that lays me flat for a week, I've had international flights followed by 6am starts and a full day's work.
All that. It is nowhere near, and I mean NOWHERE near, how this feels.
Sleep doesn't fix it.
Resting doesn't fix it.
Coffee doesn't touch it.
The fatigue is toxic. It's through every cell in my body, it's as though a parasite comes in and sucks the life out of each individual cell and you can feel it draining out of you and you can do nothing about it. It's caused by the cancer itself and exacerbated by the drugs.
About ten days ago I started to lose energy. I thought well, lately I've had a lot of social stuff going on, so I've been "on" a lot, and it's draining. I had a couple of days just on my own, doing nothing much and I didn't feel much better. I cancelled not one, but two activities. Thursday, I totally utterly forgot that a friend was waiting for us to pick up food she'd cooked for our freezer and to come over for tea. I only had one thing to remember that day and I forgot it.
Monday and Tuesday, I was utterly, totally, zonked. As in: I don't want to move. I dont' want to shower and dress, I can't be bothered sleeping or watching TV. Just sitting. I forced myself to read a book just to take my mind off how tired I was.
Being that tired for a day.. well perhaps it's a downtime after a long visit from a friend. But another one?
That freaks me out. Because when my tiredness goes up like that it's a sign my meds aren't working. I had a blood test Monday. And Tuesday evening, the doctor called to say that my meds are not, indeed, working any more.
Lord Xeloda is no longer riding by my side. He's gotten bored and ridden off across the plains. I'm riding alone again, with J for company, but no protector. So I'm tired. My tumour markers have risen by 50%.
I need to change to new meds. This time it will probably be chemo, the Taxanes, which are nastier than Xeloda by a long way. The hair falling out, feeling sick and throwing up, make your hands and feet painful, ulcer in the mouth type chemo that you have to have injected.
Shit.
In two weeks, we are supposed to be leaving for Tahiti to see the total solar eclipse. It's all paid for and it's all business class, good hotels, and no travel insurance will cover this. Existing cancers, not covered.
Tuesday night, J and S and I spent the evening wailing.
It's so hard to remember that I'm going to die. When I do remember it hits me fresh all over again as though I never heard the news before. Well, not quite, but nearly. I spend so much time trying not to remember.. looking straight ahead and not noticing it, focussing on the joy and the good things, that when it sneaks up in front of me, it's very hard to bear.
This morning, the doctor was called again and he said he doesn't yet know what treatment he'll give me but he'll work around Tahiti. The question will be how I can feel well enough.
Bye bye, Lord Xeloda. It's been nice knowing you.
You may think you know how zonked feels but, unless you've had cancer, or chronic fatigue syndrome, you Do. Not. I have been you, remember; I've had tired. I've had exhausted from working all night and playing all weekend and needing a day to sleep and recover. I've had big emotional upsets with a week in another city working 14 hour days and flights. I've had horrible flu that lays me flat for a week, I've had international flights followed by 6am starts and a full day's work.
All that. It is nowhere near, and I mean NOWHERE near, how this feels.
Sleep doesn't fix it.
Resting doesn't fix it.
Coffee doesn't touch it.
The fatigue is toxic. It's through every cell in my body, it's as though a parasite comes in and sucks the life out of each individual cell and you can feel it draining out of you and you can do nothing about it. It's caused by the cancer itself and exacerbated by the drugs.
About ten days ago I started to lose energy. I thought well, lately I've had a lot of social stuff going on, so I've been "on" a lot, and it's draining. I had a couple of days just on my own, doing nothing much and I didn't feel much better. I cancelled not one, but two activities. Thursday, I totally utterly forgot that a friend was waiting for us to pick up food she'd cooked for our freezer and to come over for tea. I only had one thing to remember that day and I forgot it.
Monday and Tuesday, I was utterly, totally, zonked. As in: I don't want to move. I dont' want to shower and dress, I can't be bothered sleeping or watching TV. Just sitting. I forced myself to read a book just to take my mind off how tired I was.
Being that tired for a day.. well perhaps it's a downtime after a long visit from a friend. But another one?
That freaks me out. Because when my tiredness goes up like that it's a sign my meds aren't working. I had a blood test Monday. And Tuesday evening, the doctor called to say that my meds are not, indeed, working any more.
Lord Xeloda is no longer riding by my side. He's gotten bored and ridden off across the plains. I'm riding alone again, with J for company, but no protector. So I'm tired. My tumour markers have risen by 50%.
I need to change to new meds. This time it will probably be chemo, the Taxanes, which are nastier than Xeloda by a long way. The hair falling out, feeling sick and throwing up, make your hands and feet painful, ulcer in the mouth type chemo that you have to have injected.
Shit.
In two weeks, we are supposed to be leaving for Tahiti to see the total solar eclipse. It's all paid for and it's all business class, good hotels, and no travel insurance will cover this. Existing cancers, not covered.
Tuesday night, J and S and I spent the evening wailing.
It's so hard to remember that I'm going to die. When I do remember it hits me fresh all over again as though I never heard the news before. Well, not quite, but nearly. I spend so much time trying not to remember.. looking straight ahead and not noticing it, focussing on the joy and the good things, that when it sneaks up in front of me, it's very hard to bear.
This morning, the doctor was called again and he said he doesn't yet know what treatment he'll give me but he'll work around Tahiti. The question will be how I can feel well enough.
Bye bye, Lord Xeloda. It's been nice knowing you.