My whole attitude to life has been gradually changing for a few years now. I think more due to the loss of the leg, than from the cancer.
I am seeing the "Black Swan" philosophy in many aspects of my life.
I recently got food poisoning.
A month of wonderful, home cooked, healthy, meals is not worth one bout of food poisoning. Food poisoning, harmed me more in a day, than healthy eating for months could possibly benefit me. I would be healthier eating from MacDonald's everyday and NOT getting food poisoning.
Visiting a friend and getting lots of attention and caring, would be negated in a one second fall down their stairs. A fall could break an arm or leg to make crutches and a wheelchair unusable. That means months in a bed. I don't think a few months of love and caring are worth that risk. I would rather be in my safe home, in my safe wheel chair, than taking small risks, that have such super consequences. There is the desire of safety, in all that I do.
It used to be that the pluses of life were balanced by the negatives in life. It was worth doing exciting things if the worst that could happen was proportional. Life was in balance.
Now I see the positives in life as being minor, and the negatives as being huge.
A month of enjoyment playing with kittens, is not worth once, tripping over one, and falling.
Some people will act super concerned about the health of their children, spend big money on car seats to protect them, buy the safest car, and the best medical care money can buy, and yet, text while driving. In one second they can do more to damage the future of their supposed loved ones, than a whole life of caring and love could ever make up for. Their "love", is false love.
I would gladly forgo the positive pleasures of life, for the absence of the negatives of life.
The Buddhist philosophy, is of minimizing both the peaks of life, and the valleys.
I think about statistics of falling while using my prosthetic leg.
If the prosthetic is reliable 99% of the time, then I would fall every 100 steps.
If the prosthetic is reliable 99.99% of the time, then I would fall every 10,000 steps. That is only one day of walking.
99.999% reliable is a fall every 10 days.
99.9999% reliable is still a fall every 100 days. A broken arm, or broken leg every three months is un-acceptable to me.
Stairs, kittens, uneven ground, carpets, and wet floors change the percentages to make me want to just stay home in my wheel chair.
I seem to have made peace with the cancer. Death no longer scares me, like it did a year ago.
Injury, or falling, however, terrifies me.
I am sure the psychologists would have lots to say about that.
How unlike the "Me" that I used to know..
Tuesday, 10 October 2017
Monday, 10 July 2017
July 10 2017 - PET scan relief
After visiting the oncologist and the surgeon, the consensus is that the PET scan shows a clear body, free from any sign of cancer.
The bright spot shown on the PET scan, in the inside groin area, of my stump, is most probably a torn muscle, NOT a tumor. :-)
Angiosarcoma does not usually metastasis to muscles. It will first go to lungs, liver, and kidneys.
A PET scan shows fast cell growth, like a tumor, or a torn muscle.
The bright spot shown on the PET scan, in the inside groin area, of my stump, is most probably a torn muscle, NOT a tumor. :-)
Angiosarcoma does not usually metastasis to muscles. It will first go to lungs, liver, and kidneys.
A PET scan shows fast cell growth, like a tumor, or a torn muscle.
I spent a few hours with the prosthetic guy. He has lately been on some courses to learn about "Elevated Vacuum" prosthetic systems. He wants to practice on me.
I'll get to tryout some expensive prosthetic hardware. The leg he wants me to tryout costs about $100,000. I hope I don't like it, because if I do, then I'll be trying to borrow that money from someone. Actually I have no intention of ever paying it back, so it would be more of a "gift", than a loan. :-)
Elevated vacuum systems are another way of attaching the prosthesis to the stump. There is a seal between the socket, and the stump. A vacuum pump that sucks the air out from between the two. This makes the stump swell and form a perfect fit inside the socket. It is supposed to make the proprioception (feeling of position) much better.
One downside I see with a system like that, is that putting the prosthetic on, and removing it, is a much more complex and time consuming procedure.
Another problem is that the vacuum pump is battery driven, and needs recharging daily.
I look forward to trying the system, but I feel that reliability of a pure mechanical system may suit me better than the electronic systems. I feel the same regarding the new bionic knees and ankles. It is hard to beat the reliability of stainless steel, titanium and carbon fiber, when compared with batteries, motors, and electronics.
-----
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. :-(
------
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:
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. :-)
-----------------------
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.
----
-------------------
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
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.
--
----
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.
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.
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.
--
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......
-----------
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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