Trust in the kindness of strangers
Each day brings something new to our lives; today we made use of the wheelchair for the first time. Elizabeth accompanied us to the Jewish. As soon as I lifted the chair to place it in the trunk, I realized that Sema was right; it weighs a ton. It’s only a temporary loner from the CLSC; the one from Lethbridge, tailored to Gilly’s size is still on order. I hope it is lighter. Otherwise, we will have to move onto Plan B.
I decided that we would stop by at the physiotherapy department to see Thi and determine if Gilly is hardy enough to continue with the program. I had my reservations, and so I chose not to send him this week; he would have had to go with Elizabeth using the transport service. I just wasn’t ready to make that leap. I am forced to put my trust in the kindness of strangers while at work and this unnerves me.
Thi spent a short time measuring Gilly’s strength and overall mobility; we had little time to spare because our blood test was scheduled smack in the m idle of our usual physio appointment. On the way out I turned to Thi, who couldn’t help but display an expression of concern as he watched me settle Gilly back into the wheelchair, and asked if it still makes sense to come in twice a week. I explained that it is increasingly more difficult to travel; if he is unable to make use of the equipment (he now uses one rather than 3 pieces of equipment), perhaps we should examine the benefits. He suggested we come in next week and he will try to train Elizabeth to do some important exercises at home. I decided then and there that I would accompany her on Monday, because it happens to be possible this week, and we can both try to follow through. This has been a problem from the get go; he could be doing many of the exercises at home provided by the physiotherapist and the O.T., but he refuses. I handed the struggle over to the caregivers, but they have not been any more successful. He works well for Thi on site; that’s about it. I wonder if a personal trainer would work??
We met with Dr. Kavan, and as per usual, I provided him with more information than we received. He feels that the Decadron is having a positive effect, and so we should continue on the mega dose he’s on. I asked what the progression of the disease looks like; what’s in store for us exactly (a bold question; I wasn’t sure I wanted to hear his answer, but knew it was time to hear the truth). He admitted that he has absolutely no clue as to the prognosis; technically it is a benign tumour, and so very slow growing, but where exactly it chooses to grow and at what rate has yet to be seen.
He suggests we wait until December 20th (the post MRI appointment arranged to take place at the Neuro) to decide what to do about Temodal. I reported that although it doesn’t make Gilly sick, it weakens him significantly, and so creates more problems mobility-wise; he’d be in even more potential danger of falling than he is right now. If the tumour has grown, he wants him off the drug immediately; no deliberating is necessary, but if there has been no change, we’ll have to weight the pros and cons very carefully.
Based on responses to his queries, he acknowledged our decision to support Gilly at home as long as humanly, reasonably possible. He checked to ensure that we will see Dr. Lapointe (our appointment is next week). I asked why it is so important, now that we plan to remain at home. He assured me that we will need his support one day; he will guide me accordingly. I find the very notion of requiring this doctor’s services traumatizing, but I believe that more information is better than not enough. I’ve been caught unaware of crucial information before. Knowledge is power.
He asked Gilly several questions, and then glanced at me. I told him that we have an appointment for a speech assessment on December 7th. “Don’t bother. It’s a waste of time,” he advised and quickly bid us goodbye until December. He was called out of the room at that moment, so I glanced at the chart out of curiosity. I saw the words ‘disoriented’ and ‘falls frequently’ and decided I had read enough.
We met with Christina of the CNR team next. She did keep her promise to call me last week to check in, but it was the day we spent in the hospital, so I never called her back. She was delighted with the news that Gilly gained a kilo, and offered a few more suggestions. She emphasized the importance of the upcoming swallowing test (scheduled for Wednesday at 11:00) and asked me to ensure they send a copy of the result to the CNR office. I’m glad she mentioned this, because it was Dr. Kavan who wrote the referral at Nelda’s request. He won’t see Gilly again at the Jewish until the 18th of January, so the results may lie fallow. This way Christina can make recommendations around food texture changes if need be in a more timely fashion.
Dr. MacDonald asked about medications, and when I exposed the information about Decadron he asked if I’ve noticed any side effects. He explained that there may be positive as well as negative ones (such as increased appetite and energy). I mentioned his recent habit of telling me he hates me and that he doesn’t care about me, etc. He assured me that this is the Decadron talking; Gilly is not responsible for saying such things. Now again, I know that Gilly loves me and he’d never want to hurt me, but I thanked Dr. MacDonald for telling me this; it is comforting hearing this confirmation from someone so caring who is a art of the medical profession.
I told him that Thi will decide if it’s safe enough for Gilly to continue attending physio sessions next week and gingerly asked if he could continue being seen by the CNR team even if he no longer partakes in this aspect of the program. He assured me that we would continue to be followed, and even if we just need to come by to have talks such as this, it’s worth it. I thought to myself, “”What a fine gentleman he is. How lucky we are to have landed up protected under his capable wing.”
We chose to take advantage of late day sunshine and the new wheels; we walked to the car (uphill, unfortunately, since I’m already so very tired, yet still could be considered fortunate, since I sorely need exercise; it all depends on how you look at it). Pushing my main man uphill provoked a sense of determination on my part; we are more prepared to tackle obstacles than we give ourselves credit for sometimes.
It was tricky getting Gilly out of the chair and safely into the car while working against the force of gravity; I don’t have the brakes down pat just yet. We used to work well as a team, but now it feels as though we’re opposing forces; he wants to be independent, but moves like a drunken soldier and I want to protect him from falling, as he so often does these days. While this circus act was drawing to a close and Gilly was tucked in safely a young man passed by and offered to help place the chair into the car for me. He could plainly see that I was running out of steam and had one more hurdle to overcome. I accepted his offer without hesitation and thanked him profusely and repeatedly for his kindness.
I have been treated to more generosity, positive spirit and pure goodness over the last nine months than I ever knew existed on this earth. My colleagues have been more than friends, offering to do my food shopping, change my winter tires, give me lifts, clear my yard, share my workload and more, so much more. My colleagues have shown kindness, generosity and friendship. Acquaintances have proven to be angels in disguise. Many professionals have showered us with compassion, their expertise and genuine empathy. My friends have always been amazing (I choose carefully), but of late, they’ve become part of my family. I have always loved our family, but I treasure them more than ever; I would never have made it with my head above water if not for their support and undying love. In the face of adversity, so many have touched our lives and made a difference, and continue to do so in their own special way. There’s really no way to extend a great enough thanks to all for the many varied gifts bestowed upon us.
I decided that we would stop by at the physiotherapy department to see Thi and determine if Gilly is hardy enough to continue with the program. I had my reservations, and so I chose not to send him this week; he would have had to go with Elizabeth using the transport service. I just wasn’t ready to make that leap. I am forced to put my trust in the kindness of strangers while at work and this unnerves me.
Thi spent a short time measuring Gilly’s strength and overall mobility; we had little time to spare because our blood test was scheduled smack in the m idle of our usual physio appointment. On the way out I turned to Thi, who couldn’t help but display an expression of concern as he watched me settle Gilly back into the wheelchair, and asked if it still makes sense to come in twice a week. I explained that it is increasingly more difficult to travel; if he is unable to make use of the equipment (he now uses one rather than 3 pieces of equipment), perhaps we should examine the benefits. He suggested we come in next week and he will try to train Elizabeth to do some important exercises at home. I decided then and there that I would accompany her on Monday, because it happens to be possible this week, and we can both try to follow through. This has been a problem from the get go; he could be doing many of the exercises at home provided by the physiotherapist and the O.T., but he refuses. I handed the struggle over to the caregivers, but they have not been any more successful. He works well for Thi on site; that’s about it. I wonder if a personal trainer would work??
We met with Dr. Kavan, and as per usual, I provided him with more information than we received. He feels that the Decadron is having a positive effect, and so we should continue on the mega dose he’s on. I asked what the progression of the disease looks like; what’s in store for us exactly (a bold question; I wasn’t sure I wanted to hear his answer, but knew it was time to hear the truth). He admitted that he has absolutely no clue as to the prognosis; technically it is a benign tumour, and so very slow growing, but where exactly it chooses to grow and at what rate has yet to be seen.
He suggests we wait until December 20th (the post MRI appointment arranged to take place at the Neuro) to decide what to do about Temodal. I reported that although it doesn’t make Gilly sick, it weakens him significantly, and so creates more problems mobility-wise; he’d be in even more potential danger of falling than he is right now. If the tumour has grown, he wants him off the drug immediately; no deliberating is necessary, but if there has been no change, we’ll have to weight the pros and cons very carefully.
Based on responses to his queries, he acknowledged our decision to support Gilly at home as long as humanly, reasonably possible. He checked to ensure that we will see Dr. Lapointe (our appointment is next week). I asked why it is so important, now that we plan to remain at home. He assured me that we will need his support one day; he will guide me accordingly. I find the very notion of requiring this doctor’s services traumatizing, but I believe that more information is better than not enough. I’ve been caught unaware of crucial information before. Knowledge is power.
He asked Gilly several questions, and then glanced at me. I told him that we have an appointment for a speech assessment on December 7th. “Don’t bother. It’s a waste of time,” he advised and quickly bid us goodbye until December. He was called out of the room at that moment, so I glanced at the chart out of curiosity. I saw the words ‘disoriented’ and ‘falls frequently’ and decided I had read enough.
We met with Christina of the CNR team next. She did keep her promise to call me last week to check in, but it was the day we spent in the hospital, so I never called her back. She was delighted with the news that Gilly gained a kilo, and offered a few more suggestions. She emphasized the importance of the upcoming swallowing test (scheduled for Wednesday at 11:00) and asked me to ensure they send a copy of the result to the CNR office. I’m glad she mentioned this, because it was Dr. Kavan who wrote the referral at Nelda’s request. He won’t see Gilly again at the Jewish until the 18th of January, so the results may lie fallow. This way Christina can make recommendations around food texture changes if need be in a more timely fashion.
Dr. MacDonald asked about medications, and when I exposed the information about Decadron he asked if I’ve noticed any side effects. He explained that there may be positive as well as negative ones (such as increased appetite and energy). I mentioned his recent habit of telling me he hates me and that he doesn’t care about me, etc. He assured me that this is the Decadron talking; Gilly is not responsible for saying such things. Now again, I know that Gilly loves me and he’d never want to hurt me, but I thanked Dr. MacDonald for telling me this; it is comforting hearing this confirmation from someone so caring who is a art of the medical profession.
I told him that Thi will decide if it’s safe enough for Gilly to continue attending physio sessions next week and gingerly asked if he could continue being seen by the CNR team even if he no longer partakes in this aspect of the program. He assured me that we would continue to be followed, and even if we just need to come by to have talks such as this, it’s worth it. I thought to myself, “”What a fine gentleman he is. How lucky we are to have landed up protected under his capable wing.”
We chose to take advantage of late day sunshine and the new wheels; we walked to the car (uphill, unfortunately, since I’m already so very tired, yet still could be considered fortunate, since I sorely need exercise; it all depends on how you look at it). Pushing my main man uphill provoked a sense of determination on my part; we are more prepared to tackle obstacles than we give ourselves credit for sometimes.
It was tricky getting Gilly out of the chair and safely into the car while working against the force of gravity; I don’t have the brakes down pat just yet. We used to work well as a team, but now it feels as though we’re opposing forces; he wants to be independent, but moves like a drunken soldier and I want to protect him from falling, as he so often does these days. While this circus act was drawing to a close and Gilly was tucked in safely a young man passed by and offered to help place the chair into the car for me. He could plainly see that I was running out of steam and had one more hurdle to overcome. I accepted his offer without hesitation and thanked him profusely and repeatedly for his kindness.
I have been treated to more generosity, positive spirit and pure goodness over the last nine months than I ever knew existed on this earth. My colleagues have been more than friends, offering to do my food shopping, change my winter tires, give me lifts, clear my yard, share my workload and more, so much more. My colleagues have shown kindness, generosity and friendship. Acquaintances have proven to be angels in disguise. Many professionals have showered us with compassion, their expertise and genuine empathy. My friends have always been amazing (I choose carefully), but of late, they’ve become part of my family. I have always loved our family, but I treasure them more than ever; I would never have made it with my head above water if not for their support and undying love. In the face of adversity, so many have touched our lives and made a difference, and continue to do so in their own special way. There’s really no way to extend a great enough thanks to all for the many varied gifts bestowed upon us.
posted by Gilly at 11:26 PM
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