It is hard to say when it all began.
I finished my last chemotherapy infusion for bowel cancer in January 2020 and now it was time for the harsh chemicals to leave my body.
The last visit to an Oncologist was on 11 February 2020. There was neuropathy in my fingers and toes that I first noticed in December 2019 when I was having my 9th infusion, but I was reminded that this should cease within 6 months after I had finished my last infusion.
Things were looking good. I enjoyed walking and could walk down to the pond and even further down to Pine Harbour which was encouraging.
However, I noticed that my walking was getting slower, and the range of walking was getting shorter. I began to feel that I couldn’t go far unaided. It was harder walking up the small inclines. I noted in my diary that my body seemed wrecked.
In March 2020, diarrhoea and reflux returned and by the end of March my legs were not good at all. My knees were feeling numb. It was getting harder to move around easily. Lockdown was looming. Because of my low immune system my Doctor and I decided that I have the flu injection.
At the beginning of April, I noted in my diary that I was still having problems with diarrhoea and with my legs, there seemed to still be the pains in the vicinity of my knees. The pain felt a little like stinging nettles
Still not good at beginning of May. The diarrhoea and mental health does not look good, I sleep a lot and it was not always what I would call, good sleep. Very heavy and very intense and yet I could not remember any of the thoughts or what it was all about in the morning.
I felt that with all that I had been told, I should be on top of the world!
On the 4th of June I woke up with severe pain in my legs. An ambulance was called, and I was taken to hospital. After tests I was told that I had peripheral neuropathy and I was discharged. I was unhappy as I still had pain. I called my doctor and he saw me on the way home. Pills were changed. In the next few days my family observed that I was slurring my words and that my face was falling. I personally did not notice. As I was not walking comfortably, a friend called by and lent me a walker. On the way out she confided in my wife that I looked a bit like her brother who had had GBS.
On the 9th of June I was not feeling very well at all. I was having problems with my balance. I felt a mess!
The Dr rang to check on me and said to my wife, Rosemary, to ring in afternoon. He advised her to take me straight to hospital as it was thought that I was having a stroke. She mentioned my wife’s friend’s observation.
Everything seemed to be crumbling, my face, my eyes, my speech. I could not chew. The food would not go over my teeth. I was placed in the stroke ward. I was sent for a CT scan to see if I had had a stroke. There was nothing on the scan and it looked as if both sides of my face was drooping. I was unable to close my eyes properly. Somewhere along the line I had become constipated, so an enema was given. That was another story! In the middle of the night, wearing pull ups, I was placed in the Respiratory Ward.
Early next morning an MRI was ordered and finally a lumbar puncture. Abnormalities were found so the first of five blood infusions were given. They took so long each day that I called it my liquid lunch. Rosemary obtained some covers for my eyes as the light kept getting in. The mattress on the bed was changed to an air mattress. Never have I felt so uncomfortable.
I was given physio treatment for about 10 mins. That was all I could handle. I could not raise my legs. I felt dreadful. It was devastating. An OT visited and talked about goals.
I felt that I had something in my ears and that was looked at, but nothing came of it. My whole torso felt limp and heavy. Many examinations took place by students and oh that hammer! Sometimes I thought that I was being funny but the shocked looks on people’s faces. I soon learned that my face was not moving, and I was showing no emotion at all. My son told me it was the first time in his life that he had not been able to read my face.
Throughout the time I had to blow into a machine every four hours. It was my enemy to begin with as it was so hard. My face had to be held to get the air into it. I never felt rested.
Finally, it was time to be discharged. Before this could happen, I had to be sent to another hospital to have shocks put into my legs so that a final diagnosis could be made that I really had GBS. As the appointment was early it was decided that I go by taxi. Thankfully a young nurse persuaded me to go with an orderly as I would not have managed it on my own. All hospitals seemed to be on partial lockdown.
I was discharged on the 23rd of June.
As I was deemed not so bad, after leaving hospital, I was given 10 weeks of Physio and OT visits as rehab. It was to take place at home. I was loaned a walker, a toilet surround, and a stool for the shower. The visits were stopped with the August 2020 lockdown. The scheduled Neurologist visit did not happen. I received a phone call in its place. I seemed to be Getting Better Slowly. I was told I was fortunate it could have been worse.
Where am I now?
I still have pain in my legs especially at night. Nights can be long. I often sleep in my Lazyboy chair as that is the most comfortable place to be. I use my stick if I am away from home. I have a disability card. I cannot walk far from home for long. Thank goodness, the garden is a wonderful haven!
I don’t use a lot of medication. I am often tired and fall to sleep frequently. I have difficulty with my eyes at times and my ears ring. Wheat bags have been amazing.
I keep in touch with my doctor. I have requested a neurologist visit but so far this has been denied.
My grandson Ryan asked me – ‘Pop, when are you going to get well?’
I am working on it buddy!
My son, Damon said to me – ‘Never mind father! You’ll be right for Christmas. We just won’t nominate which Christmas!