I'm now 8 weeks into afatinib treatment. I have found it hard to distinguish between the mental effects of re-staging and the side effects of the new drug.
The re-staging came as a shock. I had thought that I was doing well. I certainly felt good. As I told many of you "If I didn't know I was sick, I wouldn't know I was sick." That's not true any more. Now I know I'm sick. Every little twinge and ache seems to be magnified. There have been minor depression issues at times.
The time between having a scan/biopsy done and getting the results back stretches to infinity. Like a time warp. Writing and getting caught up before the next storm hits helps pass the time.
While the news that there was growth in the tumour in my left lung was unexpected and it took a few days to recover equilibrium, I have been feeling pretty good.
I'm writing this from a maelstrom of emotions.
Most cancer patients describe the anxiety while waiting for scan results as excruciating. And it is common enough that we have a special word for it - scanxiety. Again I am so fortunate that my doctor understands that and has called me with results or as was the case yesterday scheduled an appointment for the day after the scan to give me the results.
So with a lot of time on my hands sometimes my mind takes me dangerous places. Be warned "Here be dragons" as the old maps used to say. There's a line from the song "The Wreck of the Edmund Fitzgerald" that goes:
"Does any one know where the love of God goes
When the waves turn the minutes to hours?"
The Psalmist talks about it too in the tenth Psalm. "God, are you avoiding me? Where are you when I need You?" But then we come to vs 14 - "But You know it all--"
I had reason today to reflect on palliative care in another context.
The common perception of palliative care is that is about managing death. It is not. The best definition I have heard is that palliative care is about symptom management. As such it is appropriate to engage with palliative care early in the treatment process to manage symptoms.
This isn't exactly as delivered but it is what I had in front of me as I spoke.
Eulogy for Yvette
Most of you wouldn't recognize me without this cap so I'm going to be comfortable while I talk to you about Yvette.
Yvette was seanchai - an Irish storyteller. A lover of words. A few short weeks ago she stood here as a lay reader. Most of you didn't realize that she was fulfilling a bucket list item knowing she was going to die soon. Reading scripture was for her a special blessing in a life filled with blessings.