New taste sensation
Gilly’s on a two day cycle. Today was a better day than yesterday. He managed to consume a decent number of calories in small increments, which really isn’t a bad way to eat, and is still moving about at this hour, claiming he feels he needs to move around (not typical evening behaviour these days).
Gilly experiences a period of wakefulness of late that comes on after taking Temodal late at night. This is a newly discovered window of opportunity for snacking, and so it places less stress on eating during the day. I myself sleep through his new midnight snacking habit, but see the remnants in the morning. It comforts me to know that he developed an appetite, and was satiated, all in my absence.
The EEG took place right on schedule, and Gilly was told by the technician that we would have results in three days time. We returned home, and Gilly relaxed.
I wondered why Dr. Kavan’s receptionist at the Jewish never called to give us our next appointment, even though I arranged to have Gilly’s files sent to her from the Neuro as she’d instructed me to do 3 weeks ago. This morning I decided to ring her up and inquire. This is the week that Dr. Kavan should see Gilly, if the pattern of every three weeks is to continue. Halima claimed never to have received the papers, but promised to look into it. She suggested I come see her later in the day since we’d be at the Jewish (twice today). She made a comment about the fact that she has already had to speak to this woman today about failing to send things she’s asked for.
While Gilly was having the EEG I went up to the 7th floor (brand new oncology department) to settle the matter with this gal face to face. She said she just received the fax from the Neuro, and then she asked to see Gilly’s hospital card. “He has it with him. I’ll come back when he’s done,” I offered. “No, just give me his name….Oh, I have his appointment with a note to call back. I must have called but you didn’t return the call.”
Now this is a ridiculous untruth. I have been anxiously awaiting the call for this appointment, knowing he completes the radiation on Monday. I'm dying to know for sure exactly what are the next set of instructions???? I could not understand why there has been no response from Dr. Kavan’s end since May 17th when we last saw him. When I called this woman originally to make the appointment she jumped down my throat and put down Dr. Kavan in a nasty manner, telling tales out of school, “He knows the rules.”
“He is to come on Thursday at 4:00,” she ordered. “But he has radiation at 4:00,” I gasped. “That’s too bad. They have to change it. I was going to have him see Dr. Kavan next week because I’m booked up, but now I see your husband already has an appointment for this week, so you must take it,” she commanded rudely.
My insides were churning. It’s not so easy to change radiation time at the last minute. I silently prayed this woman’s demand could actually be accommodated downstairs in the radiation department. If not, what would we do? I feel we need to know exactly what comes next before the end. Dr. Kavan originally said they’d check the blood once a week, but in 6 weeks it was done only twice through the radiation department, and this was initiated by me. Has Dr. Kavan ever even seen the results? Do the counts determine what’s in store down the line???? For the short term??? Long term??? How long does he remain on Decadron? Who decides??? Does the radiation oncology team drop Gilly after Monday except for maybe a follow-up appointment or two???? They know him best at this point. It’s an alienating experience to be so close to the end of one branch of the ‘medical family’, and not know those from the other side, really. Who will take a genuine interest?
She handed me the appointment slip, and I noticed it said 4:40. Another blunder on her part, and one that caused me grief for no reason. This appointment is feasible to honor. I realized then and there that she is highly disorganized. She never called me in the first place, and lied when she said she hadn’t received the papers (or was grossly mistaken), because she had made the appointment before I called this morning. It was there on the computer. She wields tremendous power over our lives. How unsettling.
The new Oncology wing is attractively decorated, but not what I’d call ‘warm’ in either sense of the term. I made a mental note to ensure Gilly dresses for the chill (or was that just my imagination, based on the cold reception I got over the phone and in person?).
Last night, Jerry suggested taking Gilly to lunch en route to radiation, however Gilly begged off this afternoon due to fatigue. Later on in the day I mentioned to Gilly that I overheard him postpone his lunch date. He said, “Yeah, I wasn’t in the mood to eat at Schwartz’s.” I probed further, “What are you in the mood for?” “Oh, something different, I guess,” he revealed. “Like what?” I persisted. “Maybe Chinese, Vietnamese, anything I haven’t eaten recently,” he divulged. “Well, Gilly, you could have mentioned that to Jerry. He was just making a suggestion to give you a chance to eat something special in a new environment,” I explained. “Oh,” he answered. “I didn’t think of that.”
I asked if he’d like Renée to come over for dinner (as planned), or if he’d prefer that the three of eat out at a restaurant. He replied, “I’d like to eat some Chinese food, but I’m not much company these days.” I reminded him that he’s the same ‘not much company’ at home as he would be in a restaurant, and we shared a laugh. We made plans to dine out, and it was like a breath of fresh air to break from our weeknight routine. Renée was not nearly as impressed with the unique experience as we were. Each dish we ordered titillated our palates with flavours unlike those present in the food I tend to prepare at home. Gilly diplomatically reiterated that it has nothing to do with my cooking; he needs to taste new foods. Gilly derived great pleasure in spending the evening out with our friend from Ottawa who we rarely have a chance to see. I reaped the benefits in more ways than one.
Gilly experiences a period of wakefulness of late that comes on after taking Temodal late at night. This is a newly discovered window of opportunity for snacking, and so it places less stress on eating during the day. I myself sleep through his new midnight snacking habit, but see the remnants in the morning. It comforts me to know that he developed an appetite, and was satiated, all in my absence.
The EEG took place right on schedule, and Gilly was told by the technician that we would have results in three days time. We returned home, and Gilly relaxed.
I wondered why Dr. Kavan’s receptionist at the Jewish never called to give us our next appointment, even though I arranged to have Gilly’s files sent to her from the Neuro as she’d instructed me to do 3 weeks ago. This morning I decided to ring her up and inquire. This is the week that Dr. Kavan should see Gilly, if the pattern of every three weeks is to continue. Halima claimed never to have received the papers, but promised to look into it. She suggested I come see her later in the day since we’d be at the Jewish (twice today). She made a comment about the fact that she has already had to speak to this woman today about failing to send things she’s asked for.
While Gilly was having the EEG I went up to the 7th floor (brand new oncology department) to settle the matter with this gal face to face. She said she just received the fax from the Neuro, and then she asked to see Gilly’s hospital card. “He has it with him. I’ll come back when he’s done,” I offered. “No, just give me his name….Oh, I have his appointment with a note to call back. I must have called but you didn’t return the call.”
Now this is a ridiculous untruth. I have been anxiously awaiting the call for this appointment, knowing he completes the radiation on Monday. I'm dying to know for sure exactly what are the next set of instructions???? I could not understand why there has been no response from Dr. Kavan’s end since May 17th when we last saw him. When I called this woman originally to make the appointment she jumped down my throat and put down Dr. Kavan in a nasty manner, telling tales out of school, “He knows the rules.”
“He is to come on Thursday at 4:00,” she ordered. “But he has radiation at 4:00,” I gasped. “That’s too bad. They have to change it. I was going to have him see Dr. Kavan next week because I’m booked up, but now I see your husband already has an appointment for this week, so you must take it,” she commanded rudely.
My insides were churning. It’s not so easy to change radiation time at the last minute. I silently prayed this woman’s demand could actually be accommodated downstairs in the radiation department. If not, what would we do? I feel we need to know exactly what comes next before the end. Dr. Kavan originally said they’d check the blood once a week, but in 6 weeks it was done only twice through the radiation department, and this was initiated by me. Has Dr. Kavan ever even seen the results? Do the counts determine what’s in store down the line???? For the short term??? Long term??? How long does he remain on Decadron? Who decides??? Does the radiation oncology team drop Gilly after Monday except for maybe a follow-up appointment or two???? They know him best at this point. It’s an alienating experience to be so close to the end of one branch of the ‘medical family’, and not know those from the other side, really. Who will take a genuine interest?
She handed me the appointment slip, and I noticed it said 4:40. Another blunder on her part, and one that caused me grief for no reason. This appointment is feasible to honor. I realized then and there that she is highly disorganized. She never called me in the first place, and lied when she said she hadn’t received the papers (or was grossly mistaken), because she had made the appointment before I called this morning. It was there on the computer. She wields tremendous power over our lives. How unsettling.
The new Oncology wing is attractively decorated, but not what I’d call ‘warm’ in either sense of the term. I made a mental note to ensure Gilly dresses for the chill (or was that just my imagination, based on the cold reception I got over the phone and in person?).
Last night, Jerry suggested taking Gilly to lunch en route to radiation, however Gilly begged off this afternoon due to fatigue. Later on in the day I mentioned to Gilly that I overheard him postpone his lunch date. He said, “Yeah, I wasn’t in the mood to eat at Schwartz’s.” I probed further, “What are you in the mood for?” “Oh, something different, I guess,” he revealed. “Like what?” I persisted. “Maybe Chinese, Vietnamese, anything I haven’t eaten recently,” he divulged. “Well, Gilly, you could have mentioned that to Jerry. He was just making a suggestion to give you a chance to eat something special in a new environment,” I explained. “Oh,” he answered. “I didn’t think of that.”
I asked if he’d like Renée to come over for dinner (as planned), or if he’d prefer that the three of eat out at a restaurant. He replied, “I’d like to eat some Chinese food, but I’m not much company these days.” I reminded him that he’s the same ‘not much company’ at home as he would be in a restaurant, and we shared a laugh. We made plans to dine out, and it was like a breath of fresh air to break from our weeknight routine. Renée was not nearly as impressed with the unique experience as we were. Each dish we ordered titillated our palates with flavours unlike those present in the food I tend to prepare at home. Gilly diplomatically reiterated that it has nothing to do with my cooking; he needs to taste new foods. Gilly derived great pleasure in spending the evening out with our friend from Ottawa who we rarely have a chance to see. I reaped the benefits in more ways than one.
posted by Gilly at 10:18 PM
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