D 19 - My bursting heart
D 19 - My bursting heart
Today’s blog continues the theme of care and support from yesterday. I have struggled with my voice since my original CT guided lung biopsy. Somehow it must have aggravated the lymph nodes alongside my swallowing tube and put pressure on a nerve that controls the voice box. One side of the voice box became paralysed and I was reduced to a whisper and only able to talk in a few words at a time. This meant I could not continue my work as a GP and eventually as a clinical medical director in the funding arm of our local medical system. Communication with my dear Mum Margaret, who had become recently quite deaf -,was a constant and frustrating challenge! Even has she progressed through her last days I could only communicate with her by talking directly into her left ear. Not easy when trying to support someone in active phase of dying.
When we first came to Auckland I asked the radiation support nurse whether we would be able to access some advice on voice use and maybe there was some form of amplification device we might access. They referred me to the voice clinic which as we came to understand and appears to have happened in reverse of usual referral process. We were lucky to meet Alana, an Auckland Hospital based speech language therapist who saw us and was able to provide some great advice but even more importantly able to look down at what was actually happening with my vocal cords. She then was able within a week get me in front of a Ear, Nose, Throat
surgeon who then injected the paralysed cord with a Botox type material. After 48 hours total voice rest I now have my voice back at a level to hold a normal, if not mildly husky, conversation. She then saw me two days later for a full swallow test to determine if I still had an increased risk of food and fluid going unexpectedly down my air pipe. Thankfully there appears to be only a mild risk now of aspiration after the injection. The whole process was so well managed and has made such a difference. 48 hours of no voice use was difficult but I was so lucky I had the opportunity to face that challenge after I had been able to assist my mum , brother Keith and his wife Jean through the day of managing Mum passing. It would have been difficult without any voice at all. The bonus is that I now have a voice that allows me to grieve and to talk with comfort with members of my family around me.
Thank you Alana and Mr. Vokes and your amazing team.
My thanks also go to the wonderful team at Radiation machine 6 who make me feel so welcome, show interest and concern about my welfare daily. They have laughed with me , supported me through periods of vulnerability whilst Marge Jel’s future was unclear and made the daily process a doddle in the park. They always check to ensure I am eating well, not losing weight and have no symptoms of concern. They have managed where able to reschedule appointments to enable some flexibility in our travel plans and needs. As you can imagine everyday visits to then same old place could become a daily” grind” but these folk have made it “easy as”.
We have had so much positive support from so many friends all over New Zealand and across the world. Such positive messages we receive from all are helping keep a positive approach and make it easy to soldier on. We have had a number of personal visits which helps break the monotony too.
Friend Jane Trowbridge was here and a longtime friend of Renene from South African nursing days came and spoilt us with goody pack . Xmas will be a bit more special with these thoughtful gifts .
Today’s blog continues the theme of care and support from yesterday. I have struggled with my voice since my original CT guided lung biopsy. Somehow it must have aggravated the lymph nodes alongside my swallowing tube and put pressure on a nerve that controls the voice box. One side of the voice box became paralysed and I was reduced to a whisper and only able to talk in a few words at a time. This meant I could not continue my work as a GP and eventually as a clinical medical director in the funding arm of our local medical system. Communication with my dear Mum Margaret, who had become recently quite deaf -,was a constant and frustrating challenge! Even has she progressed through her last days I could only communicate with her by talking directly into her left ear. Not easy when trying to support someone in active phase of dying.
When we first came to Auckland I asked the radiation support nurse whether we would be able to access some advice on voice use and maybe there was some form of amplification device we might access. They referred me to the voice clinic which as we came to understand and appears to have happened in reverse of usual referral process. We were lucky to meet Alana, an Auckland Hospital based speech language therapist who saw us and was able to provide some great advice but even more importantly able to look down at what was actually happening with my vocal cords. She then was able within a week get me in front of a Ear, Nose, Throat
Thank you Alana and Mr. Vokes and your amazing team.
My thanks also go to the wonderful team at Radiation machine 6 who make me feel so welcome, show interest and concern about my welfare daily. They have laughed with me , supported me through periods of vulnerability whilst Marge Jel’s future was unclear and made the daily process a doddle in the park. They always check to ensure I am eating well, not losing weight and have no symptoms of concern. They have managed where able to reschedule appointments to enable some flexibility in our travel plans and needs. As you can imagine everyday visits to then same old place could become a daily” grind” but these folk have made it “easy as”.
We have had so much positive support from so many friends all over New Zealand and across the world. Such positive messages we receive from all are helping keep a positive approach and make it easy to soldier on. We have had a number of personal visits which helps break the monotony too.
Friend Jane Trowbridge was here and a longtime friend of Renene from South African nursing days came and spoilt us with goody pack . Xmas will be a bit more special with these thoughtful gifts .
And how could I possibly manage without the “rock and roll” star that is my ever present caring wife. Renene has paddled this challenge everyday with me . Faced the same uncertainties, shared the tears , the frustrations , and this unsettled time away from our own home , our animals and our own bed. I love this lady so much “ my heart will burst”!
And then to top it all daughter Courtney and fiancé Lewis arrived to share our ongoing journey over Xmas .
We will soon have our son, Brendan, arriving on Boxing Day and hug each other very tightly.
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