Let's get this party started
We just dropped Tamara off after a celebratory dinner at Gilly’s new favourite restaurant; a Vietnamese place that his friend Trudy introduced him to awhile back. Gilly completed his last round of radiation today, and tonight he will take his final dose of chemo (Temodal) before his 4 week drug holiday.
We were asked to come in at 11:00 instead of 4:40 today to see Dr. Kavan. We learned this at 10:30, so we dashed over, hoping to get medical matters out of the way sooner than later.
We were ushered into the examining room immediately, then waited and waited and waited…Dr. Kavan poked his head in and apologized for the delay at about noon. He assured us he’d be back in 4 minutes. We waited and waited some more. He showed up at 12:30.
One thing Gilly has had to tolerate is the waiting game. I bring reading material, and as long as I’m not worried about missing my teaching time or being late for a meeting, I can relax and enjoy the time with Gilly. It’s much more difficult for Gilly, being that he's physically uncomfortable when out of his element.
We learned that the 42 doses we were told he would take was merely an estimate. He is to stop the same night as radiation ends. Gilly was biting at the bit to find out when he could go back to caffeine. Tomorrow!! I actually just returned home with a large can of Tim Horton’s; his favourite brand these days.
He reported that Gilly’s blood is perfect. I asked, “What does that mean? Is it where it is expected to be at this point, or really perfect?” “It’s really perfect,” he replied. The news just keeps getting better.
Dr. Kavan asked Gilly if he plans to continue with the maintenance program (Temodal for a year: once a month for 5 days, then off for 3 weeks, and so forth). Gilly asked for more details about ‘maintenance.’ The doctor explained that there is no hard evidence that the maintenance program will have any effect. The jury is still out; it will be five years before research findings will be available. Due to the location of the tumor (‘on a bad side’, as he phrased it) and because Gilly is considered young, he recommends it. Still, he was careful to admit that he does not know for certain that it will help. He highly doubts it will do any harm, but cannot give Gilly a guarantee. He suggests that Gilly make the decision in 4 weeks time when we return to see him. Gilly later told me that he plans not to think about this at all until 2 days before the appointment. At that point, he will decide.
I asked about a nurse being assigned to Gilly’s case. Now that he has moved from the Neuro to the Jewish, he needs to have a contact. Vigit bade us farewell yesterday, because she is the radio oncology nurse. Gilly is unprotected at this point (except for the CSSS, of course, but her specialty is not oncology). He is still technically being treated, so who will take over this position? Dr. Kavan let us know that he will be assigned a primary nurse.
He asked if an MRI has been scheduled, and we told him it hasn’t. He instructed us to call the Neuro to make the arrangements, and to sign a consent form on the way out. Interesting that he wanted us to be treated at the Neuro so we would have access to machines of this nature, and now that Gilly has switched to the Jewish, he is accessing the Neuro’s machinery anyway. Susie predicted this, and she was so right. Chalk another one up for yourself, Sue.
He asked many detailed questions about Gilly’s condition and documented all responses. When he reached the ‘eyes’ he showed concern for Gilly’s plight. He asked if a neurological ophthalmologist has been consulted. He listened intently and confirmed what Dr. Wise had predicted; it will be 3 to 4 months before the eyes settle into a more stable condition, due to swelling. He may lose some hearing further down the line as well.
We were advised to resume the previous dose of Decadron (tapering will begin in two weeks time) if we notice an increase in fatigue, because this would indicate swelling. I asked incredulously, “You mean we just up the dosage if we notice this symptom appear? We don’t need a new prescription to guide us?” “No, just watch for this symptom,” he directed. This is where I’d certainly want to consult with someone. Good thing I have that special 24 hour Garde Medicale number I was finally given this week by Cathy, the CSSS nurse. Until I have the name and number of the primary nurse, I will rely on this service if I am uncertain as to what to do.
He asked about walking, and Gilly told him of his discomfort due to the weakness on the right side of his body. He explained that after some physio, this may improve. This was my cue! I asked how we could access physiotherapy, and he suggested the CLSC (no one uses the correct letters yet!). I told him briefly about the visit yesterday, and mentioned that there was no expected follow-up. He wrote this down and suggested I bring this up with the primary nurse so that there will be follow-up. Perhaps this will come to be. I intend to keep pushing.
Dr. Kavan is a very busy fellow, and we had to wait a long time to see him, but he was patient, answered all questions, asked excellent ones himself and seemed to take a sincere interest in how Gilly is doing. He apologized again for the long wait, and bid us goodbye, congratulating Gilly on his final day of treatment on his way out.
I mentioned the other day that Hope and Cope was cold in every sense of the word. The atmosphere warmed up as soon as we emerged from the examining room. We were greeted affectionately by Donna, a Birch Point ally. She couldn’t do enough to make us feel welcome and supported.
On the way out, we had to stop at the desk to make an appointment for next time. There was a line-up, so I encouraged Gilly to zip over to the radiation department and see if they’d take him 2 hours early, to avoid the extra trip home and back. I was able to accomplish some of the tasks, but was asked to return to complete the rest later.
I found Gilly gladly waiting for ½ hour so as to be seen 1 ½ hours earlier. In the meantime, I made the appointment with Dr. Sultanen for 4 weeks as instructed yesterday by Dr. Wan, and luckily managed to get one for the same day as Dr. Kavan’s, a few hours later. This is one perk to being seen at the Jewish only.
Upon return to Hope and Cope on the 7th floor, I asked the clever, pleasant and proactive secretary, Sehnaz, my new friend, if she could see about a primary nurse. Long story short, she went to bat for us and insisted they assign one to Gilly now. You see, we were falling through the cracks again; he is new to the Jewish (oncology department) and not on chemo at the moment, so the plan is to wait a month and begin when he sees Dr. Kavan in a moth's time IF he begins the maintenance program. I want a contact person today, and would like to push for comprehensive physiotherapy. The sooner I make the request, the faster the wheels turn. Red tape gets the wheel all sticky which slows it down considerably, but I plan to cut it at its source. Luckily, Sehnaz is on my team.
The head nurse who will assign a primary nurse to Gilly was in a meeting. Since we’d been at the Jewish for nearly 4 hours at this point, it was time to go home and wait for a call. Gilly needed a comfortable place to rest, so off we went. I will follow up tomorrow.
Liylah was put out on her rope this afternoon, and was subsequently dragged home by our back door neighbor by the scruff of her neck. That escape artist pulled her head right out of her collar and ran off to frolic on Davies Avenue. Luckily, this woman adores Liylah and dashed to her rescue, fearing she would be hurt by a motor vehicle. She sent regards to Gilly and suggested I tighten the collar. The chronicles of Liylah would make quite a hefty volume by now. Butterscotch never got into so much mischief!
Gilly just took the last dose, and we both heaved a sigh of relief. Tim is on the counter waiting to be brewed first thing in the morning. Coke will be served for Shabbat dinner. It's party time, and our vacation begins right now!
We were asked to come in at 11:00 instead of 4:40 today to see Dr. Kavan. We learned this at 10:30, so we dashed over, hoping to get medical matters out of the way sooner than later.
We were ushered into the examining room immediately, then waited and waited and waited…Dr. Kavan poked his head in and apologized for the delay at about noon. He assured us he’d be back in 4 minutes. We waited and waited some more. He showed up at 12:30.
One thing Gilly has had to tolerate is the waiting game. I bring reading material, and as long as I’m not worried about missing my teaching time or being late for a meeting, I can relax and enjoy the time with Gilly. It’s much more difficult for Gilly, being that he's physically uncomfortable when out of his element.
We learned that the 42 doses we were told he would take was merely an estimate. He is to stop the same night as radiation ends. Gilly was biting at the bit to find out when he could go back to caffeine. Tomorrow!! I actually just returned home with a large can of Tim Horton’s; his favourite brand these days.
He reported that Gilly’s blood is perfect. I asked, “What does that mean? Is it where it is expected to be at this point, or really perfect?” “It’s really perfect,” he replied. The news just keeps getting better.
Dr. Kavan asked Gilly if he plans to continue with the maintenance program (Temodal for a year: once a month for 5 days, then off for 3 weeks, and so forth). Gilly asked for more details about ‘maintenance.’ The doctor explained that there is no hard evidence that the maintenance program will have any effect. The jury is still out; it will be five years before research findings will be available. Due to the location of the tumor (‘on a bad side’, as he phrased it) and because Gilly is considered young, he recommends it. Still, he was careful to admit that he does not know for certain that it will help. He highly doubts it will do any harm, but cannot give Gilly a guarantee. He suggests that Gilly make the decision in 4 weeks time when we return to see him. Gilly later told me that he plans not to think about this at all until 2 days before the appointment. At that point, he will decide.
I asked about a nurse being assigned to Gilly’s case. Now that he has moved from the Neuro to the Jewish, he needs to have a contact. Vigit bade us farewell yesterday, because she is the radio oncology nurse. Gilly is unprotected at this point (except for the CSSS, of course, but her specialty is not oncology). He is still technically being treated, so who will take over this position? Dr. Kavan let us know that he will be assigned a primary nurse.
He asked if an MRI has been scheduled, and we told him it hasn’t. He instructed us to call the Neuro to make the arrangements, and to sign a consent form on the way out. Interesting that he wanted us to be treated at the Neuro so we would have access to machines of this nature, and now that Gilly has switched to the Jewish, he is accessing the Neuro’s machinery anyway. Susie predicted this, and she was so right. Chalk another one up for yourself, Sue.
He asked many detailed questions about Gilly’s condition and documented all responses. When he reached the ‘eyes’ he showed concern for Gilly’s plight. He asked if a neurological ophthalmologist has been consulted. He listened intently and confirmed what Dr. Wise had predicted; it will be 3 to 4 months before the eyes settle into a more stable condition, due to swelling. He may lose some hearing further down the line as well.
We were advised to resume the previous dose of Decadron (tapering will begin in two weeks time) if we notice an increase in fatigue, because this would indicate swelling. I asked incredulously, “You mean we just up the dosage if we notice this symptom appear? We don’t need a new prescription to guide us?” “No, just watch for this symptom,” he directed. This is where I’d certainly want to consult with someone. Good thing I have that special 24 hour Garde Medicale number I was finally given this week by Cathy, the CSSS nurse. Until I have the name and number of the primary nurse, I will rely on this service if I am uncertain as to what to do.
He asked about walking, and Gilly told him of his discomfort due to the weakness on the right side of his body. He explained that after some physio, this may improve. This was my cue! I asked how we could access physiotherapy, and he suggested the CLSC (no one uses the correct letters yet!). I told him briefly about the visit yesterday, and mentioned that there was no expected follow-up. He wrote this down and suggested I bring this up with the primary nurse so that there will be follow-up. Perhaps this will come to be. I intend to keep pushing.
Dr. Kavan is a very busy fellow, and we had to wait a long time to see him, but he was patient, answered all questions, asked excellent ones himself and seemed to take a sincere interest in how Gilly is doing. He apologized again for the long wait, and bid us goodbye, congratulating Gilly on his final day of treatment on his way out.
I mentioned the other day that Hope and Cope was cold in every sense of the word. The atmosphere warmed up as soon as we emerged from the examining room. We were greeted affectionately by Donna, a Birch Point ally. She couldn’t do enough to make us feel welcome and supported.
On the way out, we had to stop at the desk to make an appointment for next time. There was a line-up, so I encouraged Gilly to zip over to the radiation department and see if they’d take him 2 hours early, to avoid the extra trip home and back. I was able to accomplish some of the tasks, but was asked to return to complete the rest later.
I found Gilly gladly waiting for ½ hour so as to be seen 1 ½ hours earlier. In the meantime, I made the appointment with Dr. Sultanen for 4 weeks as instructed yesterday by Dr. Wan, and luckily managed to get one for the same day as Dr. Kavan’s, a few hours later. This is one perk to being seen at the Jewish only.
Upon return to Hope and Cope on the 7th floor, I asked the clever, pleasant and proactive secretary, Sehnaz, my new friend, if she could see about a primary nurse. Long story short, she went to bat for us and insisted they assign one to Gilly now. You see, we were falling through the cracks again; he is new to the Jewish (oncology department) and not on chemo at the moment, so the plan is to wait a month and begin when he sees Dr. Kavan in a moth's time IF he begins the maintenance program. I want a contact person today, and would like to push for comprehensive physiotherapy. The sooner I make the request, the faster the wheels turn. Red tape gets the wheel all sticky which slows it down considerably, but I plan to cut it at its source. Luckily, Sehnaz is on my team.
The head nurse who will assign a primary nurse to Gilly was in a meeting. Since we’d been at the Jewish for nearly 4 hours at this point, it was time to go home and wait for a call. Gilly needed a comfortable place to rest, so off we went. I will follow up tomorrow.
Liylah was put out on her rope this afternoon, and was subsequently dragged home by our back door neighbor by the scruff of her neck. That escape artist pulled her head right out of her collar and ran off to frolic on Davies Avenue. Luckily, this woman adores Liylah and dashed to her rescue, fearing she would be hurt by a motor vehicle. She sent regards to Gilly and suggested I tighten the collar. The chronicles of Liylah would make quite a hefty volume by now. Butterscotch never got into so much mischief!
Gilly just took the last dose, and we both heaved a sigh of relief. Tim is on the counter waiting to be brewed first thing in the morning. Coke will be served for Shabbat dinner. It's party time, and our vacation begins right now!
posted by Gilly at 9:52 PM
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