It has been quite a year for both me and my caregiver – Leah, my wife.
I ended up getting out of the hospital about Dec. 7, 2021. I had been in St. Joseph’s for one whole month while they tried to find what was wrong with me. They found the problem – melanoma cancer. So, in mid-December they surgically removed an enormous (4.6 cm) melanoma in the area of my chest near my armpit.
So entering 2022 I was at home for recovery. I still was on stomach feed in a tube into my stomach. My wife had to set up the IV feed four times per day while I lay in my comfortable position and watched TV. I really couldn’t get around while being fed through the IV. I don’t have to worry about my diet because my food is from Nestles and is called ‘isource’ – very healthy but a liquid. No solid foods or anything else is allowed through my mouth.
Everything was peaceful until I go back to see the surgeon to check my surgery in February. Unfortunately, he found another piece of melanoma. This one was only about 2 cm. He showed it to me – really ugly.
After this experience, my oncologist thought that I should get a CT scan to check and see if there was any more melanoma. And he found three spots on my lungs Luckily, my oncologist was a specialist with melanoma. He knew of a new drug that has been produced to deal with melanoma and thought that I could get permission to take these pills. Apparently, they are very expensive. And hard to get. But I got them in the spring. So this takes us up to April. I am still on these pills. Two pills twice a day taken on an empty stomach morning and night. A real nuisance – the empty stomach part for my pills.
The cancer was a trigger that was causing an autoimmune disease caused dermatomyositis (DM) – very rare. I am still suffering with DM and daily taking a steroid called prednisone. I have a poor balance and have small swellings and itches all over my body. I need either a walker, two urban walking poles or a cane to go outside. Just now I can walk, very carefully, outside without a cane. Unfortunately, my wife has to take care of the garden work and snow shoveling.
I was still writing columns for the Alzheimer’s Society and Wingham Advance-Times newspaper. I had these diseases that keep hanging on. I couldn’t play golf or do much else so I decided to put my columns – the story of my last four months with my diseases – into a book. My stated prediction was that I would finish the book by the end of the summer. Guess what, I am just finishing the book this week – the last week of 2022. Good prediction, eh?
The Huron and Perth Alzheimer’s societies merged in April 2022. I think it was a mistake for the ASHC, after publishing 54 of my columns they decided not to carry “My Voyage with Dementia” any more. My book is titled “My Voyage wit Dementia.” It is 160 pages, 6” x 9” colour cover, black insides and coil bound on the 9” side. I am printing 1,000 copies.
I figure that I still have dementia but it is now called MCI due to AD. For this last year, I have had problems exercising. One of the dementia things that I have learned is that regular exercising is very important if I want to keep the dementia away. So is nutrition. More on those both in 2023.
So, I have bought a recumber stationary bike and services of a physiotherapist starting Jan. 3, 2023.
***
Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth since 2015. Murray was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease. Follow him on his blog entitled Voyage with Dementia – https://myvoyage553264702.wordpress.com.
