Friday, 23 June 2017

June 22 2017 - Third PET scan

Today I went for my third PET scan.
The diet was followed perfect, and I was looking forward to a clean scan. I packed an egg sandwich to eat after the scan.
I drove to the PET scan place, arriving at 10:00 and did the whole procedure of injections, pills, and drinking peppermint tasting fluid.
I took my prosthetic leg off while there, and just used crutches.

I did the scan, then she said she wanted to re-do a section. So I ended up doing a total of 40 minutes in the tunnel.
Then they told me to go wait in the cool down room because I was too radioactive to be near anybody for an hour or so. Normally they allow me to eat then, but the lady said no food. About 20 minutes later, she said the Doctors wanted another partial scan.
So I went back into the tunnel, but this time it was only for about 10 minutes. They just did my groin area.

Then I went back to the cool down room. They said I could now eat.
After eating, I started to put my leg on, to go home. Then the Lady told me to leave the leg off for a bit longer. After another hour she came in and asked me to follow her on crutches, to the ultrasound room.

There they did an ultra sound probe of the area next to my groin on the stump. The cute ultrasound Lady said the area in question was next to, the groin lymph node.

After 10 minutes she had a pile of picture paper on the floor. She picked them all up and left. About 20 minutes later, she came back with a doctor. He did another 10 minutes of ultrasounding my thigh, and he produced another pile of paper pictures. They both left with the pile of pictures, and told me to go wait in the cool down room.

About 10 minutes later a lady told me I could put my leg back on. They they came and gave me a big sealed envelope and told I could leave now, and me to give the envelope to the Oncologist. They said that it takes 3 or 4 days before the pictures are interpreted and the report will be sent to the Oncologist.

On the way home I felt depressed, so bought a pizza.

At home I looked at the CD. All images are in DICOM (Digital Imaging and Communications in Medicine) format.
---------
June 23
It was not easy to see the DICOM images. I had to use GIMP (Graphic and Image Manipulation Program) to convert them to png format.
 Here are 2 of the PET scan pictures.





 It is easy to see what the problem is. On the groin muscle is a bright spot on the PET scan photos.
The bright dots above it are my balls, and the big ball above them is my bladder.
---
Today I also spoke with my prosthetists. He made a cast of my stump almost 5 weeks ago. I wondered why things are taking so long.
He has been going on courses to learn a new system for prosthetic attachment.
Normally, like with mine, there is a seal, and a one way valve, that allows air out of the bottom of the socket when the stump is forced into the socket. This forms a suction in the very bottom of the socket, and that keeps the prosthesis from falling off.
With this new system, the seal is very high on the stump, and a small vacuum pump keeps the whole stump under a vacuum. This is supposed to keep the volume of the stump the same, and force the sides to be in contact with the socket. This is supposed to give greater feel, and less stump shrinkage through out the day.
Until very recently this system has only been available for below the knee amputees.
The brochure says it is for people that:



  • need volume management
  • require improved socket fit and comfort
  • benefit from increased proprioception and enhanced gait symmetry
  • need added safety by eliminating/reducing pistoning 


  • Well, I have need of all of those. As usual, they want the price of my house for the vacuum system.

    One company also has a new foot/ankle system that allows walking on uneven ground.


    Again big prices. Add to that a good new knee, and the total for a new leg will be +- $155,000 or  R1,900,000

    My prosthetists say he is trying to get a loaner vacuum rig so he can practice building a system. He wants to learn on me. He also wants the medical aid to pitch in for most of the cost. I may have to also add some money.
    All this is very exciting for me........
    But now I have a shining spot on my PET scan pics. :-(
    ------


    Wednesday, 14 June 2017

    June 11-14 2017 - Biopsy results, Park Run venues, Army amputees

    June 11
    Park Runs are 5 km run/walk/strolls for the family.
    For more info, see my May 28 2016 blog about Park Runs.
    My favorite nearby one at the Voortrekker monument closed down. It was all on tar roads.
    There are usually many baby strollers, and dogs on leads. There are 3 new Park Runs to replace the one that closed down. All three are on rough terrain, and are two lap races. They all say that the terrain is not suitable for strollers, or young children.
    Last week I walked one lap of the Bronberrik Park Run venue nearby. It had 3 streams to cross, and a very steep hill. It took me 1 hour 6 minutes to walk the 2.4 km. The up and down slopes slowed me WAY down.

    Today I went to another new Park Run venue at Laudium. It is on a large sports ground, and has many 2 meter high berms around the various cricket fields. I zoomed around just one lap.It took me the exact same time, 1 hour 6 minutes and the distance was 2.5 km.
    Again, the up and down slopes were the main time killer. Walking up a 2 meter berm, and then back down the other side is so hard for me.

    A big reason NOT to run these Park Runs is the fact they are 2 lap races. Most people finish in about 45 minutes, and they usually stop timing after an hour. That means that every single person running the Park Run will lap me. There is no room to pass people in many sections, so I would end up delaying many, many people if I competed in these races.

    So I am thinking about doing my own Park Run at these venues, on a Tuesday or Thursday. I need the exercise. I will miss the atmosphere of the real Park Runs though. :-(

    ---------------

    June 12
    Today I went to the surgeon to have my stitches removed.
    She said all looked great, and the biopsies were good news. Both tumors were benign Basil Cell Carcinoma.

    I also chased up why the PET scan is taking so long. The Medical Aid has not given approval yet. Last time it took days. Now so far it has been 2 weeks.

    ------------

    June 13
    I just got news from my Medical Aid. The PET scan is approved.
    About 10 minutes later I got a call from, and had a good chat with, the PET scan Ladies. It looks like the morning of June 22 for my PET scan.
    ---
    I got a bit of a shock today, while reading an article in a US Army magazine.
    They took active duty Soldiers that had lost either :
    1 leg below the knee. (BK).
    1 leg above the knee (AK).
    2 legs below the knee (BBK)
    or
    2 legs above the knee (BAK)
    They also took about 100 un-amputated soldiers.
    All of these people were required to walk (no running or jogging) fast in a straight line for 6 minutes.
    The military calls this a 6MWT (Six Minute Walking Test).
    The total distances walked were measured.
    The distance each group averaged for 6 minutes was:

    Able body: 761 m
    BK:           661 m
    BBK:         576 m
    AK:           542 m
    BAK:         482 m

     I am an AK, and last week I was just able to walk 2400 m in 66 minutes. That means a double above the knee amputee can walk over twice as fast as I can. ??? What is my problem?
    Of course these are young, fit, soldiers, that have received the very best treatment, training, and rehabilitation possible, and they have the best prosthetics money can buy.
    The US Military plans on spending $1.76 million for each above knee amputee.
    The best prosthetic knee I own, was bought on eBay.

    The Army has done some major work on lower leg prosthetics for soldiers returning to active duty.
    These papers are all available for download. It is like sipping water from a fire hose.

    AK combat soldiers prefer pure mechanical knees while on combat patrols, but use microprocessor controlled knees once back inside the camps.
    In the 6MWT the type of prosthetic knee was statistically irrelevant. Not so with the prosthetic feet used. Most military AK personnel are issued feet like these:
    "carbon fiber J-shaped energy storage and return feet with shock absorbers and torque rotators"
    Us civilians have to pay house like prices for these things.

    Interestingly it seems as if personal preference is the single largest determining factor in the usefulness of a prosthetic foot. Users perceive differences between different foot designs with no evidence to support the differences. One foot just "feels" better than another.

    ----------
    June 14
    I decided to see just how far I could walk in 6 minutes.
    This required changing the setup and adjustments for the prosthetic leg.

    The knee locks stiff with weight on the heel, and breaks loose as weight shifts to the toe. There are three things that control when the knee breaks loose on a Total Knee 2000 or 2100..
    The over center geometry of the leg.
    Geometric lock settings.
    The angle of the foot in relation to the leg.
    The easier the knee breaks, the less energy it takes to walk, but it is far less stable when washing dishes or walking around in the house. Falls are much more likely.

    For my walks around the Park Run courses, I had lowered the toe on the foot. This makes it easier to go downhills, but harder to walk up slopes. This lowered toe resulted in less stability.
    The area for my 6 minute walk is flat and tared. So I wanted the foot back to level, but also wanted an easier breaking knee. So I adjusted the foot angle and the over center angle on the Total Knee 2000.

    Once I was happy that I could go fast, AND not fall, I went to the section of road by my house and walked fast for 6 minutes. Using 2 different GPSs, I went 401 and 403 meters. Far short of even the double amputees tested. :-(
    I went home, had lunch, and increased the knee flexion resistance, and decreased the extension resistance. This should make the leg swing forward quicker, and therefore allow more steps in the same amount of time.
    Back on the road, and away I zoomed for 6 minutes. 400 meters, and 401 meters on the GPS. The same speed, no change.
    I went home and installed the Total Knee 2100 from eBay. It is a much better knee, but also not a 100% knee. It leaks oil, and makes squishy noises. I got it all adjusted as best as I could, and then back to the road.
    This time I did 420 and 422 meters in 6 minutes. That is a 5% increase. I didn't feel faster or better, but obviously it was.

    I think I agree with the Army's result. Basically....
    A good knee is essential for stability and mobility, but the type and cost of the knee is not a significant factor in speed.
    A variable angle foot, a shock absorber, and an energy recovery system is more important in gaining speed.
    If my goal is a one hour Park Run, then I think a variable angle foot to handle slopes better would benefit me far more than a fancy bionic knee.

    Also losing some weight, and getting in better shape wouldn't hurt either. :-)

    -----------------------


    Wednesday, 31 May 2017

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

    May 24
    Today I visited the Oncologist again. I had an appointment also last Thursday.
    I renewed my prescriptions. I had planned on canceling all pain medication, as I had not used any in months.
    Then the weekend happened. I had terrible PLP. It felt like my left foot (the missing one) was nailed to the floor. I took more pain pills on Saturday and Sunday than I have this year total.
    I don't know the cause of the PLP, and am afraid it might return. Today I got a prescription for more pain pills.
    I also got my normal Celebrex and Avodart prescriptions.

    We decided to have the open sores behind my ears removed and sent for testing. I don't think they are Angiosarcoma, but I do know that AS likes the scalp, and likes areas of the body that are stressed. These sores fit both of those possibilities. I see a surgeon on Monday. She will look at them.

    That skin is very thin behind the ears on that bony part. I don't know how to remove a sore from there. I bet it will hurt, and I'll wish I had more pain pills.
    The good thing is I'll stop having blood on my pillows in the mornings. I have been wrapping gauze around my head, and then wearing a balaclava over that to keep the blood off the linen.

    We decided to go ahead and start the PET scan procedure. So today the Oncologist ordered the PET scan. Next will be Medical aid approval, then the ordering of the radioactive goo that goes into me, then the PET scan place will call and make sure I stick to a strict diet before the scan.

    My prosthesist is building a new socket for me. This one is way too big, and I shove lots of foam between my stump and the socket every day. As my stump shrinks, the foam moves around and some comes out the top and some collects at the bottom.
    --------

    May 29 2017
    I just visited the surgeon. She looked at the sores behind my ears, and she said they should be removed and sent for lab tests. I asked her what she thought it was. She said it was probably basil cell cancer, and not malignant.
    I asked when she thinks would be a good time to schedule surgery, and she said " Tomorrow morning."
    She said that I would be the first operation scheduled, so should be back in the ward, recovering by about 9:30. If all goes well with the anesthetic, I should be released by noon. I shouldn't drive for 24 hours after the surgery, as it will be a general anesthetic.
    My release would be on the condition that someone was there to drive me home.

    At home I found my main computer to be "unresponsive". I suspect the CPU temp is to high. Probably needs cleaning of the cooling fans.

    -------

    May 30 2017

    I'm just back from the hospital after the surgery.

    The hospital suggested that I only use crutches, instead of the prosthesis on the day of surgery, so it won't get stolen while I am in theater.

    My buddy offered to collect me after I am released, but asking him to be at the hospital by 06:00 to drop me off, was to much to ask. So I drove myself there, and planned on driving back after I felt good enough, hopefully before dark.
    I went into the theater at 07:00 and woke up about 10:00. I was very groggy. They say there are a few conditions set by the doctor, that were necessary for my release.
    I had to eat a meal, pee at least half a liter, and have someone collect me in the ward.
    I ate breakfast, but was still drowsy, and fell asleep. I woke up just in time for lunch. I then peed the required 500 ml.
    I then fell asleep again, and only woke around 13:30.
    They said I could leave as soon as my driver arrived. I told them I wanted a cup of good coffee and a piece of chocolate cake while my buddy was driving to get me. So they released me to go sit in the cafe until my "fictitious driver" collected me.
    I drank coffee and had some more lunch. I still did not feel 100%, so I had another cup.
    I finally felt better at 15:30, and I drove home. No problems.

    Now I sit at home with pain behind both ears. Pain behind ears is not a very "noble, or dignified" pain. But then I guess having pain in a missing foot also isn't a pain to be "proud" of.

    The Doctor was going to prescribe pain pills, but said that the pills I already have are much stronger than anything she would prescribe for my newest, aches. I will now take a few pain pills, and see if I can sleep.
    The bandages will make any laying on my side a bad thing, as it will put pressure on the stitches. I think I'll just sit up all night for a few nights.

    -------
    May 31

    I slept ok, sitting up right all night. The pain pills work very well on real (versus phantom) pain.

    I think today will be a sit in the wheelchair day. My head hurts. But compared to PLP, this pain is easy.
    ----


    -------------------

    Saturday, 20 May 2017

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


    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)

    ---------

    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.

    ------

    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.
    -------
    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.
    -----
    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.
    ----
    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.
    --
    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.
    --
    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!
    --------
    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.
    

    ----
    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.
    ------------- 
    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......
    -----------






    Friday, 25 November 2016

    Nov 25 2016 - Update on RV living.


    10:00 Nov 24 2016
    Thanksgiving Day
    There are a zillion mosquitos flying around this morning. All over the RV windows and the cars.
    Notice the word “cars”.
    Next to the RV are my buddy's car he loaned me, and my other friends delivered my Metro from town yesterday. :-) I love my Chevy Metro. It is a great little car that gets great fuel consumption. But it is a manual transmission, and needs a left leg to push the clutch. :-(
    It has been acting like a scarecrow in a friends driveway. To add to the impression that someone is home while she is at work.

    There is something about me, that I am sure is not normal. When confronted with a possible action, I often think “Why would I want to do that?”
    I analyze the “intention” of my actions.
    It is not as if I need a “reason” to do something, but I do want to understand “why” I want to do something. Often when I do something to help someone, I do it because it makes “me” feel good to help them. I am not being nice because I want to be nice, I am being nice because it makes “me” feel good.
    It is like my only purpose in being nice, is because I am selfish. Being nice, makes ME ME ME, feel good.

    Yesterday, two of my friends brought my Metro out to the property. They both were very busy getting ready for a large Thanksgiving dinner and gathering, yet they took time to do something that was not pleasant, and time consuming. They did this for me.
    I immediately question their motives. Why would they do that for me? What is in it for them? Do they also get pleasure from helping people? Are they just good people, and want to help others. Altruistic by nature. Motiveless giving. The world needs more people like these.
    Having friends like this is a great thing, but I question my “worthiness”.
    When it comes to being friends, I don't think I am very good at it.
    --
    I have many projects for the long weekend.
    I want to install a wireless alarm. It will sound an alarm in the RV when ever anything goes through the property gate. The gate is about 100 yards/meters away from the RV.
    I need to install 3 grab bars in the bathroom.
    I have hooked up one of the living room lights to the voice controlled Arduino. I can turn on and off the living room light by voice now. I need to also hook up the hall and bathroom lights.

    Wow! A hawk/eagle/big bird just attacked the bushes, it got a squirrel.
    It's a hawk. Bare legs. Smaller than I thought. Bad luck for the squirrel, but good luck for the hawk. Life is not a “zero sum” game.

    The biggest project for the weekend, is trying to figure something to do with the Metro. I spent a few hours online, trying to figure out some options. I want to be able to drive it, and tow it behind the RV.
    Option 1. Make the Metro electric. This would cost about $5,000. Twice, what the whole car is worth. Electric cars don't need a left leg.
    Option 2. Buy/install an electric clutch conversion kit. About $2000.
    Option 3. Invent, and make a cable pulley system to allow hand operation of the clutch. About $200 for parts, plus lots of labor.
    Option 4. Design and build a holder for the prosthetic foot onto the clutch pedal. Then use force on my stump to push the prosthetic foot, to move the clutch. $10.

    Yesterday I tried to drive the Metro using my prosthetic leg to push the clutch. With the seat almost all the way back to minimize the angle and increase the leverage to push the clutch pedal. With correct placement of the prosthetic foot, I was able to push the clutch in, BUT...The knee locked. I was pushing the pedal with the prosthetic heal, so as soon as the leg went straight, it locked. I was jammed tight in the seat, and no way to release the knee lock.
    I slid the seat all the way back, and used my cane to pry the prosthetic foot down far enough on the clutch pedal. Enough to put pressure on the toe, which broke the knee loose.
    This solution will need lots of thinking, and planing to be able to use the clutch with the prosthetic leg in a fail safe way.

    I also need to move the RV about 2 feet back. But first I need to fill in some holes. I dread shoveling sand into the holes. My balance seems to be the problem. I would make a lousy gardener.
    --
    I just learned that many Chinese stores, that specialize in women's things, have “man caves” for men to wait while their women shop.

    --

    Tuesday, 22 November 2016

    Nov 22 2016 - The cost of doing things, has changed for me.


    Sun Nov 20 2016 – 07:10
    Brrr. 5C(40F) I am a wimp.
    The bear outside my RV doesn't seen to think the cold is unpleasant.
    There were bears outside when I went to bed, and there is a bear outside now.

    Last night I had a good shower. I made out of some shelving, a seat between the edges of the bathtub. I can slide from the toilet onto the shower seat. Now I need grab bars.
    --
    Monday 21 November

    On my buddy's property where I am staying, there is a shower. A very rustic shower, but well made, and it even has an electric hot water heater. It is used by people that camp or hunt on the property. 
    There is a WW2 re-enactment next week, followed by a huge DJ party. The shower will be used lots.
    I decided to get the shower all clean for those people. 

    The ground if covered with tree debris from the hurricane. Normal walking is difficult, and walking with a prosthetic leg is very time consuming. Because of the high grass and the thousands of branches laying around, my prosthetic leg seldom swings forward enough to lock. I use a walking stick to smack the leg forward to lock the knee. This requires balancing on my good leg while pushing the prosthetic leg into lock. At least when I fall, it is on soft ground. The property is mostly clumps of grass growing in sand. Now everything is covered with a few inches of pine needles and branches.

    First 10 minutes was walking between the shower and the shed trying to find the key to the shower. 
    Next 10 minutes was getting the hot water heater on.
    The inside of the shower was all moldy, dirty, and full of little green frogs.
    There is a hose pipe that looks like it has not been used in years. It is all kinked, and the temperature last night was 38F (4C) so the hose was stiff. 
    It took me almost 1 hour walking back and forth to unkink the hose, to get the water flowing.
    Then I went back to the RV to get spray soap, my grabber bar, and a sponge. I sprayed the shower, (and frogs) and used the grabber bar to hold the sponge, and wiped down the inside of the shower.
    Now the shower is much cleaner, and so are the frogs.

    All in all, I spent 2 hours doing a job that would have taken 20 minutes a few years ago.

    All this hard work reminded me about the Russian Socialist movement of many years ago. They figured that a fair pricing of an item should be a reflection of the amount of labor necessary to make the item, or complete the service. Equal pay, for equal work.
    So, if it takes 20 man hours to grow 20 tomatoes, then each tomato should be worth one hour labor. If it takes 100 hours to paint a house, then you can compare tomatoes to painting a house.
    The problem was, of course, that if someone grows tomatoes in a computerized, hydroponic system, then each tomato only costs 10 minutes. So you had tomatoes at the market for 1 hour cost, right next tomatoes for 10 minutes cost. Both are fair prices, and both are worth what they are charging. But which would the people buy?

    I used to earn about $100 an hour. So for cleaning of the shower, I should be compensated about $200. (R 2600). 
    My buddy could have got someone to clean the shower for the price of a beer.
    I struggled for 2 hours, and fell, and got wet, and probably got a blister on my stump, and all that effort is worth the price of a beer. 
    Because of cancer, and an amputation, my labor has gone from being worth $100 an hour, to about $1 an hour.   
    My labor is worth about 1% of what it used to be worth. 

    Of course sometimes, the labor is worth it. Last night the football game was on, but my TV antenna on the RV roof was pointed the wrong direction. So in the dark and cold, and with the prosthetic leg on, I climbed up onto the roof of my RV, and re-pointed the antenna. This is something that 2 years ago would have required caution, and planning. But now it was exhausting and dangerous. 
    I think that sometimes I get so fed up with being useless, that I just don't care about the risk, and do stupid things.  

    This shows that I should concentrate my energies on thing that I can still do with the same effort as a few years ago. So instead of cleaning showers, I should be setting up DNS servers. :-)
    --
    Tuesday 22 November 06:30
    Temperature inside the RV is 4C.(about 40F)
    I no longer take care to be quiet in the RV just because there are bears around. They seem to be getting used to the noise.
    This morning is a mother with one small cub standing under the big tree. I gave up trying to tell them apart. It could be the same bear over and over :-)
    A small cub came by all by itself. I wanted to capture it and give it to a friend. :-)



    I have 5 credit/debit cards that don't work. I'll sort out the ones I can today.
    I will also get my guns and spears from the shop.
    I need to install my grab bars.

    My mind is full of thoughts about my car. I tried to drive the beetle in Pretoria. It was not possible to push the clutch. I want to try to drive my Metro, but it has a foot clutch also. I love that car.
    I might be able to build a hand operated clutch.
    I might be able to make it electric.
    My buddy has loaned me his car for a few days. I need to zoom around lots to get thinks done. His car is a Ford escape Hybrid. It is one of the very few automatic transmission cars that can be towed with all four wheels on the ground. I like playing with the electric drive part of the hybrid system.
    The Escape get about 30 MPG (7 L/100km) which is good for an SUV.




    Later

    Saturday, 19 November 2016

    Nov 19 2016 - At Deland Fl.


    07:07 Friday 18 November
    I am listening to the Daytona Beach news on the radio.
    I am safely in my RV on my buddy's property way out in the boondocks near Deland Florida.
    The temperature is cold. About 6C (45F).
    I was very fortunate, that the last night I spent in the RV, 2 years ago, must have been a cold night, because I had left winter sheets and many blankets on the bed. Very welcome last night. I was too tired to do any housekeeping. I did a quick cold water sponge bath and went to sleep. I slept 11 hours.
    Sleeping in the RV is similar to camping. I usually have all windows open, I can hear all sounds.
    It is so quiet this morning, I can hear branches breaking on the many trees. This property is magical. How my buddy can own this property, and NOT live on it is one of life's mysteries.

    My buddy had the RV electricity plugged in, and the water and sewage hooked up.
    The truck battery was bad, so he replaced it. Aren't friends nice? :-)
    The two large house batteries are both dead. I will try to add water, but I think they are not recoverable.
    OH!!!..A mother bear and 3 cubs just walked past. That must have been the noise of the branches breaking.! I love this place!!




    The cubs ran and raced WAY up into a big tree.


    It is amazing how paranoid the mother is. She jumps at every noise or sound, yet ignores the fact that the cubs are hanging from a branch way off the ground.
    I can't see the cubs, they are way up a tree. The mother is just walking around under the tree.

    The flight was long. I had the prosthetic leg on for about 38 hours. For most of the flight, I had the socket very loose, and pulled almost off.
    Last night when I took off the silicone liner, I found 4 blisters. One is a blood blister. Today will be a rest day for my stump.
    This morning my whole stump is sore. It was abused for sure.

    The radio says that this weekend will be cold. Low about 4C (40F) and the high 20C (65F).

    The cubs are still playing in the tree. Chasing each other around from branch to branch.

    Delta Airlines was great. They assumed command of me the whole way. Traveling by wheel chair is very limiting. All their wheel chairs are built so the passenger can't get in or out of the chair easily, and the brakes are controlled in the back by the pusher. When they parked me someplace, they say that someone will come to get me, there is actually no option except to just sit. I did no shopping or anything fun on the trip.
    The only way to pee was to ask the pusher to take me to a toilet.
    The out bound flight from Johannesburg had 36 wheel chair passengers. This causes quite a problem for the airlines. I was talking to the Air hostess, and she said this flight is called the miracle flight. She said of the 36 wheelchair passengers that get on in Johannesburg, only a few will be in wheelchairs when the flight lands. The others will just walk off with the other normal passengers.
    Sure enough, when we landed at Atlanta, there was a whole fleet of wheelchairs waiting, but only 8 of us used wheel chairs from the airplane in Atlanta. The other “patients” were miraculously cured during the flight. People take advantage of anything they can.
    Handicap services is actually more of a “Fat and Lazy” services.

    All the cubs are coming down from the tree.


    They are running into and out of the thick brush. They definitely are NOT in stealth mode.
    Does a wild bear shit in the woods? Absolutely, positively, 100%, without a doubt, a wild bear DOES shit in the woods. More precisely, a wild bear shits by the passenger door of an RV, that is parked in the woods.

    I can also confirm, without a doupt that bears don't like it when you make coffee in a microwave.

    --
    A friend just called. She is bringing over a picnic basket for me. Essential foods. :-) Aren't friends nice. :-)
    Yesterday I drove my buddies car to WalMart for a quick shopping trip. My stump had shrunk lots, so I put on 2 stump socks while still in the parking lot. As I walked into Walmart, a lady came up and told me, “Your leg is too long, go see these people, they can help you.” She handed me a business card. Volucia County Amputee Support Group. Cool. I would like to try some of the Amputee training events. The have obstacle courses, and show you the best way to conquer each obstacle.
    That would help me lots.

    The mother bear just walked out of the bushes, then around the RV, then back into the bushes.

    Her and the cubs were within 20 meters of the RV for over an hour and a half. :-)
    --
    11:10
    Three grown up bears just walked past the RV. Not near as cute as the cubs earlier.

    I have very limited cell phone coverage out here on the property. I usually have 0 bars, but everyonce in a while, I get 1 bar and stuff gets downloaded.
    --
    11:30 A big male bear just walked past.....I guess it is a male. It asserts itself like a male.
    Wow 8 different bears in 4 hours.
    --
    21:15
    Another single bear...Maybe the same one...it is hard to tell. I need a paintball gun, and then color code them :-)
    18:05
    A friend came over and brought some food for me. :-)
    We chatted for a long time. She is a keen cyclist, and also does war re-enactments. In a few weeks a WW2 training re-enactment will be held on this property. It is German versus Americans and New Zealanders. She will be a German Nazi Bicycle message delivery expert.
    I will be right in the middle of WW2. I need a Swiss neutral flag for my RV, or a big white flag. :-)

    The news says it will freeze this weekend
    --
    Saturday morning 07:30
    Brrr...
    I see hunters are here on the property. It must be deer season.
    There are many squirrels. I used to feed them.
    Last night, my buddy brought by his car for me to borrow for a few days. I have lots of shopping and running around to do today.
    I need to make some changes to the RV. Some things are very hard for me. I removed the shower doors, and the door to the bathroom. I still need at least 2 grab bars to be able to safely get onto the toilet. I want to build a seat across the bath tub to allow me to sit in the bathtub to shower.

    I better get my leg on and start the day.
    I'll mail this blog from one of the many wifi hot spots in town.
    ---