Kgwedi's Cancer: May 2017

My last blog was Nov 25. Lots has happened since then, and some may be of interest to other single legged people, so I decided it was time to do another blog.

I am still in the USA, and traveling around. I was in Florida, Texas, and am now in Pasco Washington.

While in Florida, I tried to learn to drive my car. It is a 2000 Chevy Metro. It has a 4 speed manual transmission. I battled working the clutch because the clutch needs a left leg. By putting my fake left foot on the clutch pedal and pushing with my stump, I could depress the clutch. I even made a cup like bracket and wired it onto the clutch pedal. I felt that the foot wouldn't fall off the clutch pedal with this arrangement. Sometimes the clutch would slip because I had to much pressure on the pedal. It was very difficult to “feel” how much pressure I was applying to the clutch.

I drove around my friends property for a while and figured I could drive safely. I headed out to the main road, and waited for the traffic to be almost non existent, and pulled out onto the main road. The when I tried to shift, things were all messed up. My prosthetic foot had slid off the clutch and got jammed behind the brake pedal. So now I had no clutch and no brakes. I turned the engine off and stopped. Then cranked the starter till I had moved off the road onto the grass.

I spent a few minutes trying to get the foot out from under the brake pedal, and then really screwed up. I got the knee locked straight. So, I am in the seat, with my ass up near the top of the backrest, and my head jammed into the roof, and the knee locked straight, and the foot jammed under the brake pedal.

So I bought a Toyota Prius. It is a used one. A very used one....It is a 2005 model, and cost me $4000. (About R50,000)

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There are many bears on the property in Florida. I saw 8 in one day. They would wander around the RV, and sniff it.

Walking on the property is hard. It is all sand with clumps of grass growing in the sand. There are many tree roots, and many pine needles hiding everything underneath the pine needles. I was still able to walk quite a bit by choosing my path carefully, and watching for bears.

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While in Florida, I worked for my buddy in his shop. He makes different parachute equipment. I would do the simple, easy things. I didn't want to be payed for the work, but I did want him to git more time off. He works too hard, and to long. He should be retired like me.

Wearing the leg was needed to do the work. There wasn't really room for a wheelchair. Some of the assigned tasks required standing, and some were best done siting. This was only about 2 weeks since being in South Africa and last visiting my prosthetist, so my socket still fit well and I could wear the leg all day.

About every 2 weeks I would take a day off, and rest my poor stump.

Getting around in the RV with only crutches was not fun.

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Then I decided it was time to go visit friends in Texas. It is about a 1300 mile ( 2000 km) drive. I jumped in the Prius and off I went. I stopped and visited a friend in Tallahassee on the way. Most of the 36 hour drive was done with no leg on. The Prius got 52.3 Miles per gallon (4.5 l/100km). I arrived at the Texas ranch, and was shown to my fancy accommodation. It is a small hunting lodge with every convenience possible. It is also ADA (American Disability Act) compliant.

All doors are very wide for wheelchairs. They have installed grab bars, and a shower stool. I am so thankful for friends like these.

Showering is always my biggest fear. They have eased my mind lots.

The entire ranch is rocky ground. The roads are dirt and rocks. I walked a few times the 1 mile (1,6km) from the Hunting lodge to the Gate house.

My Texas friends just got a new dog. A Blue Lacy. The Texas State dog.

They want to go on holiday next month. They asked me to ranch sit, and watch the dogs and cat while they are away. I was worried that if the dog gets hurt off the road, I could not get to it, or carry it. So they got another person that will stay on the ranch with me. I actually think she will be the ranch sitter, and “I” will be her assistant.

My stump started shrinking. It is now much thinner. I had to put some pieces of foam between the fiberglass, and the socket liner.

This helped for a while, but soon the socket liner was not able to compress any more, so the socket liner is becoming crimped. I could not insert any more foam.

The next step was to put some silicone sealer around the stump silicone liner. I had to be very careful when applying the silicone sealer. I found that only 100% silicone worked. Other kitchen or bath sealers were not as consistent as the 100% silicone. I also had to be careful to clean the outside of the liner VERY well and remove all glycerin from the area that I wanted to apply the silicone to. Silicone on top of glycerin just falls off.

I think I once got some bad 100% silicone from the store. It went on OK, and I thought it was going to work, but after a days curing, the silicone was still wet and soft. It just rolled up into small ropes and fell off.

This made the liner larger around. It helps, but I still need a sealing ring to get a suction.

I now need to jam some pieces of foam into the socket to get a good fit. I inflate the air bladders every day now.

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Feb 12 2017

I next decided to visit my Brother and his wife in Pasco Washington. I flew from Austin to Salt Lake, to Pasco. The temperature the day I arrived there was, low 25F, high 35F. (-2C to 2 C) I don't know why anyone would live in those temperatures of their own free will.

They had installed some grab bars, and a raised toilet seat, and a shower seat. I appreciate the time and money they spent changing their house just for me.

Their efforts make my staying here much more safe and comfortable.

In the last 2 months, my stump circumference has decreased by almost one inch (2.2cm). I am so looking forward to getting back to South Africa and my prosthetist. He will give me a new stump liner, and a new socket.

The socket fits very tight. It feels good for a few hours, but blisters form, and the socket gets very uncomfortable.

One thing that works (not very well) is to duct tape foam pieces on the outside of the liner. That gives a temporary solution.

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Feb 27
Today my Brother and I went on a tour of the BNSF (Burlington Northern Santa Fe) railroad switching yard here in Pasco Washington.
I often play a computer train game, and I wondered how close the game is to real train operations. The short answer is that it is very close in certain areas, and almost fictional in others.
We spent most of the time in the train yard computer room. All the sensors in the classification yard feed into the computers. Each train car has an RFID tag to identify it. The sensors measure the weight of the car, then measure the speed it accelerates down a hill to determine the rolling resistance of the car, then the computer sends it onto one of many tracks, as it builds up a new train.
When a train comes into the classification yard, it is separated into individual cars and then re assembled into new trains to go to different places. The computer also has to know how far the car must roll to be able to gently couple up to the next car in the building train, depending on how far it must roll, it's weight, and it's rolling resistance. Once it figures everything out, it uses brakes to slow the car down to the exact right speed.
The computer talks to many Sieman PLCs, and they control large relays to move the tracks to put each car on the correct track for it's destination, and the amount of braking needed.
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Mar 7
Back in Texas.
My friends went on holiday to the Grand Canyon. They hired a ranch sitter to take care of the dogs and cat. This lady stayed in the main hunting lodge apartment. I stayed in the small apartment.
We both took care of the animals.
When my friends returned, we all spent much time in a bar in Mason Texas.
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Mar 26

I'm sore today. Yesterday I participated in a "Running and Mobility" clinic for amputees in Dallas Texas. I learned a lot, but most of it was from unexpected sources.

Last Friday I drove five and a half hours to Dallas and stayed in a hotel. At 4 on the Friday afternoon I drove from the hotel to the athletic field where the event would be held, so I could find it the next morning. It took me 30 minutes to drive the 2 miles. So much traffic. On Saturday there was less traffic, and I quickly got to the sport field. The event was put on by the CAF (Challenged Athletic Foundation) and was sponsored by Ossur. Ossur makes many different prosthetic devices. I use one of their prosthetic knees.

In my previous blogs I have told about the problems I have walking down slopes. Very difficult with a prosthetic knee. One of the most important things I learned from this event, I learned before the event even started. One of the instructors was zooming all over the place helping and organizing things. He was an above knee amputee. At one point he was almost jogging, then came to a slight down slope, and he stopped, and went down that slope like a 2 year old toddler would, taking cautious baby steps. He went down that slope like "I" would go down that slope. That made me feel less incompetent.

There were about 60 amputees there. Many were double amputees. They divided us up into 3 groups. Athletes, children, and beginners. The athletes went to learn advanced running and jumping skills, and the children went to play games like soccer. The beginners (like me) were divided into two groups. Above the knee amputations, and below the knee amputations.

Each amputee was given a volunteer to help them. The volunteer's main job was to hang on to a thick canvas belt that each student had around their waist. The volunteers job wasn't to keep us from falling, but to let us fall slower to the ground. My volunteer helped lower me gently when I fell.

The volunteers also keep us hydrated, and brought chairs when we wanted to sit. She did very well, and I appreciate her time and efforts.

The instructors led us through many procedures and practice to become better at running. They would make us practice until we were good at one thing before moving to the next. One Ossur guy came over and said my foot needed adjusting, and he was a licensed prosthetist. I thought it was adjusted fine, but he tweaked it anyway. Then he started to put lock tight on the adjustment screw. I asked him not to, but he said it was law. To prevent litigation. I told him it was "MY" leg, NOT his, and to NOT put on lock tight. He said he was forced by law. I hate people that act to the law and don't think. The first thing I did was undo all he had done, and work the screws back and forth so they wouldn't lock. I thank Ossur for putting on the event, but they sure are a money grabbing company that is only concerned about profit and litigation avoidance. No thought for what the patient might want or need.

The reason Ossur sponsors events like this is because when they teach an amputee to be athletic, then the amputee will need another leg for running. So they can sell twice the prosthetics for the same number of amputees. It is good for promoting their business.

We learned to walk backwards. In the past I have fallen a few times walking backwards. The problem is that when you step back, pressure is put on the toe of the prosthetic foot, which releases the knee lock, and the knee can collapse. I used to get frustrated because I could not master walking backwards. The instructor told us, to never get the prosthetic foot behind the good foot, so pressure is never on the toe. So the answer to the question: " How do I take steps backwards without falling?",is "Don't step back, and you won't fall. " Duh!

The last thing we did was to run an obstacle race. Actually a very simple course, but difficult with a prosthetic.

We then had pizza. I chatted to a few people while we ate.

One guy had a knee similar to mine. I asked him whether he liked it. He said "yes". I asked him if it was a model 2000 or a model 2100. He didn't know. I was shocked. He didn't even know who the manufacturer was. These knees cost as much as a car. Imagine driving a car and not knowing the model, or even knowing the manufacturer of the car you own and drive.

I also chatted to a lady about her knee. I asked which model she had, and she said this one had more silver, and the previous one had more black. Duh!

I had a good chat with a double amputee. He had two normal running blades, but they were modified to have a larger flat foot with a large rubber bumper at the heel. He says they allow him to stand for hours without constantly balancing. I asked him if that setup would work for a single amputee like me, and he said that he didn't see why not. He thinks that system is the future. Three of the double amputees had that system. I mentioned how all these amputees were just standing around talking, and all I wanted was to take my leg OFF. He laughed and said I should not kid myself, because most of these people will take their leg or legs off the minute they get into the car. Most will not wait to get home. He said he "can" wear the legs all day, but it gets very uncomfortable after about 5 hours.

Here are some pics I took at the event.

Yea Texas!

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April 4

Last night was a concert by a String Quartet at the Mason Theater.
After the concert we all went to a bar. I had a wonderful and great
time. Then one of the violin players from the concert came into the bar.
We all chatted and bought him drinks. Then he took out his 1875 Violin and
gave us an impromptu concert. He said the music we would hear was just
him playing his own music. Sort of a one man jam session in a
Mason Texas Bar. I videoed him, and put the videos on you tube.

https://youtu.be/8fsg1GIPMBs

https://youtu.be/4R7F-gcgw0M

It was an outstanding evening. We left at 12.

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April 10
I'm Back in Florida. It took me 36 hours to drive the 1200 miles (2000km). Average MPG was 53.1.
I like living out with the animals, in the wild.
The RV is difficult to move around in. The narrow hall is difficult on crutches.
I will miss this place, and the people here very much when I leave.
A friend of mine here in Florida wants to have her old Porsche completely overhauled. But as it is her day to day ride, she hasn't been able to do that. So I will give her my Prius to drive when I go back to South Africa.
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April 16 - Easter
I went to church today. First time in about 40 years.
I was surprised by the extravaganza. 2 grand pianos, an organ, 3 violins, viola, trombone, drummer, guitars, and about 50 person choir.
Like this.

In this needy world, that kind of excessive opulence is definitely un-Christian.
The church seated about a thousand people. Almost all the people looked rich. I did not belong there with those people. After the service many people tried to talk with me. It was so noisy, I could not understand anything they said. I just wanted to be away from that whole scene.

I might go to church again,..... in another 40 years.

May 20 2017
It is 03:45 and that means phantom pain. I have not had it for a very long time. This is pretty bad pain, or else I am getting weak.

I went to the Oncologist last Wednesday, and go again next Wednesday. We put the PET scan on hold for awhile. There are some open sores that won't heal, on my head. I fear a biopsy may be in store.

I visited the Prosthetic guy. He made a new mold for a new socket, and it should be ready next week.

I just ate, and took a pain pill. My first pain pill in almost 5 months. I sure hope it kicks in soon.

I think I'll publish this blog. It has been going for months.

Now I wait for the pill to work......
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Kgwedi's Cancer

Wednesday, 31 May 2017

May 24-31 2017 - Visits to the Oncologist, and surgery.

Saturday, 20 May 2017

Feb 21 2017 - May 20 2017 -- Trip to America