I just had a bath to help me relax.
I plopped a bath cube in the water and immediately started to worry that it was the last one and that I needed to make time to get more.
"Be. Here. Now."
Then my phone alarm went off to remind me to take the supplements that I have been forgetting. I had to get Tim to come and switch it off, so that I didn't have to climb out of the hot water. He took the phone right out of the bathroom when he left.
"Be. Here. Now."
There is a lot of uncertainty in my life right now. I still haven't had the MRI that will tell me if the Cyber Knife radiation I had in December got rid of the tumours. Meanwhile, I am experiencing symptoms that are difficult, exhausting and disconcerting.
My head hurts on the right at the front of my forehead.
I have an earache, that sometimes extends to my jaw and throat.
The right side of my face tingles from my chin to my forehead, when I stand up.
There is something wrong with my balance.
I have begun to feel a pressure behind my right eye.
I don't have all the symptoms at once and they are not debilitating. They are exhausting. And scary.
I found out online that sometimes symptoms like this can appear, a few months after Cyber Knife treatment, so this could all just be part of the healing process. I cried when I read that. Maybe someone told me that when I was treated but I don't remember.
The brain MRI was ordered for February. A machine has broken at the hospital and they are behind. It was finally scheduled for March 12. This is after I see both my oncologists to get results.
The MRI booking office has said that only the doctor can change the protocol. The doctor's offices say they have asked to speed things up. So far nothing has changed but on Friday, they told me that if I call tomorrow (Tuesday), they might have been able to do something. It's a step in the right direction.
"Be. Here. Now."
They're also running behind in the CT scan department. My last one showed a spot on my liver, which may well be nothing. I was originally booked in for that one on March 4 (long after I was supposed to have results) but I got on a cancellation list and got that done.
When I called to confirm my treatment time for last week (so I could go to the CT), I was told that no treatment was scheduled for me. Ever. I made a few calls, fixed that and was treated the next day. I still don't know how I fell through the cracks.
My therapist says that patients who self-advocate have the best outcomes. In that case, I should do well.
"Be. Here. Now."
When I was at Statford Festival, in Ontario last summer, I bought a mug, in support of the Actors' Fund of Canada, with those words emblazoned on it. I use it alot. I like to have them in front of me.
It's so easy to feel paralyzed right now. So little is within my control. I've been on steroids for two weeks to diminish the swelling. I am bloated, hungry, jittery, angry, clumsy and fearful. I'm having a stretch of insomnia almost every night. Some nights I don't sleep at all.
Should I be doing the things that help me relax? Distract me? Get done the things that need to be done while I am still sharp and strong enough to do them? Do I just live my life as though there is still a long stretch of it ahead?
How do I chase away the morbid thoughts, without burying them so deep that they chew away on my insides? How do I acknowledge the morbid thoughts without letting them take over my life?
There is a lot of uncertainty right now. There's no news, just a lot more questions. I have to balance pushing for answers and knowing when to relax and be patient.
I have never been good at being here, now. I'm working on it. I really am.
Update to the update: I now have a brain MRI scheduled for Thursday, February 11. I will get results on February 17.
I plopped a bath cube in the water and immediately started to worry that it was the last one and that I needed to make time to get more.
"Be. Here. Now."
Then my phone alarm went off to remind me to take the supplements that I have been forgetting. I had to get Tim to come and switch it off, so that I didn't have to climb out of the hot water. He took the phone right out of the bathroom when he left.
"Be. Here. Now."
There is a lot of uncertainty in my life right now. I still haven't had the MRI that will tell me if the Cyber Knife radiation I had in December got rid of the tumours. Meanwhile, I am experiencing symptoms that are difficult, exhausting and disconcerting.
My head hurts on the right at the front of my forehead.
I have an earache, that sometimes extends to my jaw and throat.
The right side of my face tingles from my chin to my forehead, when I stand up.
There is something wrong with my balance.
I have begun to feel a pressure behind my right eye.
I don't have all the symptoms at once and they are not debilitating. They are exhausting. And scary.
I found out online that sometimes symptoms like this can appear, a few months after Cyber Knife treatment, so this could all just be part of the healing process. I cried when I read that. Maybe someone told me that when I was treated but I don't remember.
The brain MRI was ordered for February. A machine has broken at the hospital and they are behind. It was finally scheduled for March 12. This is after I see both my oncologists to get results.
The MRI booking office has said that only the doctor can change the protocol. The doctor's offices say they have asked to speed things up. So far nothing has changed but on Friday, they told me that if I call tomorrow (Tuesday), they might have been able to do something. It's a step in the right direction.
"Be. Here. Now."
They're also running behind in the CT scan department. My last one showed a spot on my liver, which may well be nothing. I was originally booked in for that one on March 4 (long after I was supposed to have results) but I got on a cancellation list and got that done.
When I called to confirm my treatment time for last week (so I could go to the CT), I was told that no treatment was scheduled for me. Ever. I made a few calls, fixed that and was treated the next day. I still don't know how I fell through the cracks.
My therapist says that patients who self-advocate have the best outcomes. In that case, I should do well.
"Be. Here. Now."
When I was at Statford Festival, in Ontario last summer, I bought a mug, in support of the Actors' Fund of Canada, with those words emblazoned on it. I use it alot. I like to have them in front of me.
It's so easy to feel paralyzed right now. So little is within my control. I've been on steroids for two weeks to diminish the swelling. I am bloated, hungry, jittery, angry, clumsy and fearful. I'm having a stretch of insomnia almost every night. Some nights I don't sleep at all.
Should I be doing the things that help me relax? Distract me? Get done the things that need to be done while I am still sharp and strong enough to do them? Do I just live my life as though there is still a long stretch of it ahead?
How do I chase away the morbid thoughts, without burying them so deep that they chew away on my insides? How do I acknowledge the morbid thoughts without letting them take over my life?
There is a lot of uncertainty right now. There's no news, just a lot more questions. I have to balance pushing for answers and knowing when to relax and be patient.
I have never been good at being here, now. I'm working on it. I really am.
Update to the update: I now have a brain MRI scheduled for Thursday, February 11. I will get results on February 17.
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