10:00
I woke up at 07:30, and then fell asleep in the wheelchair in front of the coffee machine.
I have much that needs to be done today. I hope I don't nap the day away.
I worry about having a nap attack in a mall.
I need to buy new shoes. Shoes are not a simple thing for an amputee. I want good shoes to protect the vital good foot. The heal height is important. Otherwise the prosthetic leg will think it is on a slope, and I have talked many times about the dangers of slopes. Usually the prosthesis guy will readjust the prosthesis for each pair of shoes. So I plan on buying new shoes as close as possible to the heel height and slope as the ones I have now. If the shoes are identical in height and cushioning, then they can be swapped without going to the prosthesis guy.
--
I prefer going to the mall with a friend. I worry about falling. My one friend has been given a lecture by me about how to handle things if I fall.
This advise is for a relatively strong amputee that has fallen. It does not work well with elderly, or frail people. They have a totally different fall recovery technique.
One thing is for sure....Never pick a fallen person up without their permission!!!
If I stumble and fall in a mall, I have asked my friend to:
1. Stand and block, so nobody will trip on me, or step on me. Make sure nobody tries to pick me up.
2. I will be in shock. I was walking along, and now the floor is in my face. This will take a few seconds for me to realize what is happening.
3. Maybe I broke something, or injured a shoulder or wrist. If you try to pick me up you can cause major damage. Let ME safely check to see what I may have hurt.
4. If I have hurt something, or you can see damage, call 911 and get help. Let me just lie there and keep me safe from other people wanting to help stand me up.
5. If I am undamaged, then we can think about getting me back on my feet. Balance is more important than strength in getting up. If I am trying to stand, and someone pulls on me anywhere, then my balance is put off. Don't help me up.
6. When I am ready to try to stand, I want someone standing close, and acting like a tree.
7. Stand with wide legs. Put one hand on your hip,and grip it with the other hand. I will climb up you like I would climb a tree. Don't help unless I ask for help.
8. If you are not strong enough to be a tree for me, then once I am sure there are no injuries, drag me to something I can use to climb up, or ask someone strong to be a tree.
9. Only as a last resort ask for someone to help lift me up.
If I fall in a house, bring a strong dining room chair, and put it close. I can climb up it.
--
19:00
At about 13:00 I walked out to the beetle. It started right up, and I started moving out the emergency
equipment out of it into the Atos.
Then I decided to go shoe shopping at a big mall. Arriving there I realized it was 14:00 and I had not eaten anything all day. Nothing except lemon water and coffee. So I had a pepper steak pie.
I went to Takkie Town and looked at lots of shoes, and tried on many. I ended up with some New Balance for 799R.
Then I decided that since it was 16:00 and rush hour, I would walk up and down the ramps in the mall. So I went up and down and up and down the steepest ramp in the mall. I got much better, but still not comfortable enough to do it with out hanging on to the banister. Then I drove home in the traffic.
Once home I put on my new shoes to see if they would work with the leg.
They seem to. I was very careful about heel height and slope of shoe.
I decided to go for a walk. I tried Leonie's suggestions to walk fast.
I did 1 km in 18:30. That is 3.3 km/hr. Zoom Zoom. That would be a park run
in 1 hr 30 min. I'm getting there.
--
This is a story of my treatment for Angiosarcoma, and my thoughts concerning it. The Angiosarcoma resulted in the removal of my left leg above the knee, and the wearing of a prosthesis.
Friday, 19 February 2016
Thursday, 18 February 2016
Feb 18 - Wasted day
19:30
Yesterday's 15th Chemo was nominal. I chatted lots with a fat lady. She had lymphoma cancer.
Afterwards, it was pouring with rain. I couldn't even see the parking lot from the doors, so I sat in the hospital cafe and ate lots.
I had a bad night after chemo, and only got to bed after 3:30. Lots of Phantom Pain. I think the physio session made the pain worse.
It works much better to just stay up till I am falling asleep, then go to bed. That saying "bed is for sleep only" works well.
I only awoke this morning at 10:30. I have had many 1 and 2 hour naps today. I had a long list of things to do, but I never even got my leg on, or opened the front door. All I have eaten today is one peanut butter sandwich.
I need to start getting ready for the George trip. I wanted to start the beetle, get the tool set out of it and put it in the Atos. The Atos horn stopped yesterday while I was using it. Internet says probably bad steering wheel airbag ... $$$. I'm hoping for a loose wire.
I laid down after almost falling out of my wheel chair at 15:00. I try to stop the wheel chair with something soft in front of me. I just got up at 19:00. Sleep will be hard to come tonight.
--
Yesterday's 15th Chemo was nominal. I chatted lots with a fat lady. She had lymphoma cancer.
Afterwards, it was pouring with rain. I couldn't even see the parking lot from the doors, so I sat in the hospital cafe and ate lots.
I had a bad night after chemo, and only got to bed after 3:30. Lots of Phantom Pain. I think the physio session made the pain worse.
It works much better to just stay up till I am falling asleep, then go to bed. That saying "bed is for sleep only" works well.
I only awoke this morning at 10:30. I have had many 1 and 2 hour naps today. I had a long list of things to do, but I never even got my leg on, or opened the front door. All I have eaten today is one peanut butter sandwich.
I need to start getting ready for the George trip. I wanted to start the beetle, get the tool set out of it and put it in the Atos. The Atos horn stopped yesterday while I was using it. Internet says probably bad steering wheel airbag ... $$$. I'm hoping for a loose wire.
I laid down after almost falling out of my wheel chair at 15:00. I try to stop the wheel chair with something soft in front of me. I just got up at 19:00. Sleep will be hard to come tonight.
--
Tuesday, 16 February 2016
Feb 16 - Blood and Physio day
07:30
Finally a good night sleep. I went to bed at 11:30 and was up at 06:30. Seven hours of straight sleep. I feel like a human.
I just had morning Lemon water, and am working on a cup of coffee. My coffee beans are 60% Robusta and 40% Arabica. The love of Robusta must be from time spent in northern Africa.
I have a busy day planned. First do dishes that have piled up, then laundry. I need to go to the pharmacy, then go do the blood test for tomorrow's chemo. This afternoon I have a physio session with Leonie. I am sure she will come up with devious ways to make me feel silly with the prosthesis.
I'm starting to plan my 6 week break after the last chemo, before the PET scan. The chemo tomorrow will be number 15 of 16. Only 2 more to go.
I'll be driving to George to bother Maddie for 6 weeks. I think, driving will be better than flying because of all the paraphernalia for a new amputee.
I need a wheel chair, crutches, and a cane. Lots of chemicals to clean the liner and socket. Plus a suitcase. The little car will be full.
This morning I weigh 85.8 kg. (188 pds). That is 8 kg (17.6 pds) more than in December. I am sure it is the new drugs. I have eaten so little in the past 4 days, I should be skinny.
--
17:00
Just got home.
Blood testing was nominal.
Then I got all hot and sweaty with Leonie. :-) Physio was hard work. We started out walking about 500 meters at different paces.
Then we went inside to the parallel bars. So many prosthetic skills rely on balance on the prosthetic leg only. My body on the prosthetic leg balances on the outside of the foot, just behind the little toe. I must keep strong back pressure on the socket to prevent collapsing. She tried to have me do lots of almost dance steps with my good leg while balancing on my bad leg. I had to hang on to something. There were brief times when I could balance.
Next was "braiding". That is when you walk sideways by placing one foot on the far side of the other. sometime in front, and sometime behind. Very difficult with a stiff knee and stiff ankle.
Then we worked on getting up after a fall. We tried many things I finally managed to get up once with just the cane. I need to practice that a lot.
I told her I want to plan on doing a parkrun. She has done many of the local parkruns. We went outside and she watched me "race". She had a few very good tips to speed up my walking. She says she has seen many above knee amputees walk very fast. Almost running speed. She said she wants me to be a very fast walker before thinking about running. She suggested a light strong walking stick, as long as from the ground to my elbow. Then using that, move my arms in an almost exaggerated swing while using the stick only on the right side.
Next week we will move on after I show her my mastery of the stuff I've learned today. She will also give me an exercise program for the next 6 week while I am in George.
---
Finally a good night sleep. I went to bed at 11:30 and was up at 06:30. Seven hours of straight sleep. I feel like a human.
I just had morning Lemon water, and am working on a cup of coffee. My coffee beans are 60% Robusta and 40% Arabica. The love of Robusta must be from time spent in northern Africa.
I have a busy day planned. First do dishes that have piled up, then laundry. I need to go to the pharmacy, then go do the blood test for tomorrow's chemo. This afternoon I have a physio session with Leonie. I am sure she will come up with devious ways to make me feel silly with the prosthesis.
I'm starting to plan my 6 week break after the last chemo, before the PET scan. The chemo tomorrow will be number 15 of 16. Only 2 more to go.
I'll be driving to George to bother Maddie for 6 weeks. I think, driving will be better than flying because of all the paraphernalia for a new amputee.
I need a wheel chair, crutches, and a cane. Lots of chemicals to clean the liner and socket. Plus a suitcase. The little car will be full.
This morning I weigh 85.8 kg. (188 pds). That is 8 kg (17.6 pds) more than in December. I am sure it is the new drugs. I have eaten so little in the past 4 days, I should be skinny.
--
17:00
Just got home.
Blood testing was nominal.
Then I got all hot and sweaty with Leonie. :-) Physio was hard work. We started out walking about 500 meters at different paces.
Then we went inside to the parallel bars. So many prosthetic skills rely on balance on the prosthetic leg only. My body on the prosthetic leg balances on the outside of the foot, just behind the little toe. I must keep strong back pressure on the socket to prevent collapsing. She tried to have me do lots of almost dance steps with my good leg while balancing on my bad leg. I had to hang on to something. There were brief times when I could balance.
Next was "braiding". That is when you walk sideways by placing one foot on the far side of the other. sometime in front, and sometime behind. Very difficult with a stiff knee and stiff ankle.
Then we worked on getting up after a fall. We tried many things I finally managed to get up once with just the cane. I need to practice that a lot.
I told her I want to plan on doing a parkrun. She has done many of the local parkruns. We went outside and she watched me "race". She had a few very good tips to speed up my walking. She says she has seen many above knee amputees walk very fast. Almost running speed. She said she wants me to be a very fast walker before thinking about running. She suggested a light strong walking stick, as long as from the ground to my elbow. Then using that, move my arms in an almost exaggerated swing while using the stick only on the right side.
Next week we will move on after I show her my mastery of the stuff I've learned today. She will also give me an exercise program for the next 6 week while I am in George.
---
Monday, 15 February 2016
Feb 15 - Feeling Human again after chemo
09:30
I have had a very strange last 4 days. Since the last chemo I have slept so much. I don't know if the chemo is the cause of the sleeping, or all the drugs. Maybe both.
The other day after 12 hours sleep I was in the wheel chair going to pee, and fell asleep in the wheel chair for over an hour. I awoke and really had to pee.
I was supposed to wear my leg to try and get the stump shrunk enough for a permanent socket, but I just went 2 whole days without even putting the leg on.
I put the leg on this morning before getting out of bed, and will try to wear it all day.
Yesterday in between naps I walked 1.5 km. I was trying different settings on the hydraulic cylinder for the knee. Today I will try walking after increasing the flexion resistance, and decreasing the extension resistance.
That leads to a much smoother walk, and looks much more natural, but it makes it harder to feel the leg position, which makes a fall much more likely.
I have been playing with Google Analytics. It is a Google service to show the audience of your web pages, or blogs. It shows me graphs and data like these.
I have had a very strange last 4 days. Since the last chemo I have slept so much. I don't know if the chemo is the cause of the sleeping, or all the drugs. Maybe both.
The other day after 12 hours sleep I was in the wheel chair going to pee, and fell asleep in the wheel chair for over an hour. I awoke and really had to pee.
I was supposed to wear my leg to try and get the stump shrunk enough for a permanent socket, but I just went 2 whole days without even putting the leg on.
I put the leg on this morning before getting out of bed, and will try to wear it all day.
Yesterday in between naps I walked 1.5 km. I was trying different settings on the hydraulic cylinder for the knee. Today I will try walking after increasing the flexion resistance, and decreasing the extension resistance.
That leads to a much smoother walk, and looks much more natural, but it makes it harder to feel the leg position, which makes a fall much more likely.
I went to the local pharmacy where one of the pharmacists is a man that is an above knee amputee like me. He and I always chat about our problems. He is a supervisor, so gets away with chatting to a client. He has a C-Leg micro processor controlled knee. His face was all yellow, and his nose was huge.
He told me that his wife's boss was retiring, so there was a big black tie party. They arrived and he went to the free bar to get a drink for him and his wife. The bar was crowded. He got the drinks, and stepped back to give her her drink, then stepped forward to get his drink. Stepping back had put pressure on the toe, so unlocked his leg, and when he stepped forward to get his drink the leg collapsed. He fell and hit the bar counter with his upper lip just below his nose. It broke his nose, and knocked him unconscious. He woke up in an ambulance covered in blood.
--
I have been playing with Google Analytics. It is a Google service to show the audience of your web pages, or blogs. It shows me graphs and data like these.
![]() |
| This shows the monthly volume of sessions for my blog by the location of the inquiring server. |
![]() |
| This shows by country for the last month. Note lots from China and Russia. These are hackers trying to take control of the web site. |
Tuesday, 9 February 2016
Feb 9 - Another Blood day
I had a good night sleep, but it was drug induced. :-( Lots of PLP.
Today I have not used the wheel chair or any crutch. When doing long walks I do use the cane.
I found a wonderful web site about Transfemoral amputations and the prosthesis used.
http://www.amputee-coalition.org/inmotion/mar_apr_04/transfemoral.html
They have 5 articles.
Today was blood test day. I walked to the blood test place. They were not busy, and I ended up talking to the ladies for about a half hour. I then didn't feel like eating at the local restaurant, so I just walked back home.
Today I walked 1.9 km. Walking time 1:05. I think I walk at about 2 km/hr. The articles I have read say the average patient selected walking speed for AK's is 2.5 km/hr.
With both legs, I used to walk at about 5 km/hr.
I was upset because I am so slow, but it looks like I am almost up to the average for above knee amputees.
In the last 5 days, I have walked 5 km with just a cane for support.
One problem everybody has with an AK prosthesis is taking smaller steps with the good leg than the prosthetic leg. The physio is always telling me to lengthen the stride on the good side. The cane helps with that, because the cane is on the good side. One reason it helps to lengthen the stride on the good side is because it make the toe off at the beginning of the swing phase more pronounced, and should reduce stumbling. But I feel going faster to be scary.
Even the 1 km walk in 30 minutes is very tiring. I am not in good shape for this type of exercise.
I need a good soft grassy area to learn to run on. Then I'll be zooming.
Tomorrow is chemo day. I think it will be number 14. Two more, and I will be done. :-) .....
Till the next time :-(
I will only use a cane and the leg at the chemo tomorrow.
--
Today I have not used the wheel chair or any crutch. When doing long walks I do use the cane.
I found a wonderful web site about Transfemoral amputations and the prosthesis used.
http://www.amputee-coalition.org/inmotion/mar_apr_04/transfemoral.html
They have 5 articles.
Today was blood test day. I walked to the blood test place. They were not busy, and I ended up talking to the ladies for about a half hour. I then didn't feel like eating at the local restaurant, so I just walked back home.
Today I walked 1.9 km. Walking time 1:05. I think I walk at about 2 km/hr. The articles I have read say the average patient selected walking speed for AK's is 2.5 km/hr.
With both legs, I used to walk at about 5 km/hr.
I was upset because I am so slow, but it looks like I am almost up to the average for above knee amputees.
In the last 5 days, I have walked 5 km with just a cane for support.
One problem everybody has with an AK prosthesis is taking smaller steps with the good leg than the prosthetic leg. The physio is always telling me to lengthen the stride on the good side. The cane helps with that, because the cane is on the good side. One reason it helps to lengthen the stride on the good side is because it make the toe off at the beginning of the swing phase more pronounced, and should reduce stumbling. But I feel going faster to be scary.
Even the 1 km walk in 30 minutes is very tiring. I am not in good shape for this type of exercise.
I need a good soft grassy area to learn to run on. Then I'll be zooming.
Tomorrow is chemo day. I think it will be number 14. Two more, and I will be done. :-) .....
Till the next time :-(
I will only use a cane and the leg at the chemo tomorrow.
--
Friday, 5 February 2016
Feb 5 - long crutch-less day
08:00
I woke up at 06:00 and got up, then laid down for a nap, and only got up now.
I had a restless night, but not from PLP. I was just restless, and tossed and turned all night.
I had little PLP, I hope my new drugs and socket are doing that, and it isn't something that will change later.
--
11:30
I went to Bradley and he removed my little seat on the back of the socket that I loved, but made walking difficult. Standing for long periods, like doing dishes will be harder, but walking will be easier.
--
15:30
I just walked one kilometer with only a cane. 30 minutes exactly. I didn't stop once, and got very tired.
I was thinking how if I could do a 5 km parkrun, I would consider myself cured of a missing leg. That dream is a long way away.
I used to walk at a leisurely 10 minutes a kilometer. My fastest parkrun was about 7 minutes per kilometer.
I now can do one kilometer in 30 minutes. That would be a 2 and a half hour parkrun. I think I need to learn to run with this leg.
--
21:30
I drove to the local shopping center, and bought fish and chips. I only took a cane with me. So today was a busy day, and also a crutch-less day.
I walked a lot, and only took the leg off 13 hours after I put it on. I like this new socket.
--
I woke up at 06:00 and got up, then laid down for a nap, and only got up now.
I had a restless night, but not from PLP. I was just restless, and tossed and turned all night.
I had little PLP, I hope my new drugs and socket are doing that, and it isn't something that will change later.
--
11:30
I went to Bradley and he removed my little seat on the back of the socket that I loved, but made walking difficult. Standing for long periods, like doing dishes will be harder, but walking will be easier.
--
15:30
I just walked one kilometer with only a cane. 30 minutes exactly. I didn't stop once, and got very tired.
I was thinking how if I could do a 5 km parkrun, I would consider myself cured of a missing leg. That dream is a long way away.
I used to walk at a leisurely 10 minutes a kilometer. My fastest parkrun was about 7 minutes per kilometer.
I now can do one kilometer in 30 minutes. That would be a 2 and a half hour parkrun. I think I need to learn to run with this leg.
--
21:30
I drove to the local shopping center, and bought fish and chips. I only took a cane with me. So today was a busy day, and also a crutch-less day.
I walked a lot, and only took the leg off 13 hours after I put it on. I like this new socket.
--
Feb 4 - New Prosthesis Socket
I slept very well.
I tried something new, and it worked well for one night, but I don't want to jinx it by saying how much I hope it works.
I took no pain pills, and no muscle relaxers last night. Just a Cymbalta (which is a long term nerve blocker), and a large dose of anti inflammatories. I thought that if the phantom pain was caused by wearing the leg so much, that the irritation of the end of the stump was putting stress on the cut nerves that used to run down to my feet. So maybe an anti inflammatory would relax the tension on those nerves to remove the phantom pain. I had very little phantom limb pain (PLP) last night. It was there, but manageable.
I didn't wear the leg much the last few days, as the stump has shrunk so much, that it bottoms out in the socket. Yesterday I went to Bradley, and he said that I need a new socket. But he doesn't think a permanent one can be used as the stump varies so much in size from day to day. But he made a zillion measurements and took my leg and told me to come back today.
I did laundry and managed to hang it up using crutches. I miss my leg.
Maybe me not wearing a leg for a few days was the reason for little PLP last night.
--
I went to Bradley today and got my leg back. Bradley had the new socket ready. It is MUCH thinner than the old one. I kept the silicone liner on all night, and wrapped the stump in addition. So this morning was the smallest it has ever been, and into the new socket was tight. It feels very snug, and there is much less movement. It feel a lot more like a part of my leg, than a big thing on my stump. In the factory I walked all over without a cane or crutch. He expanded the socket flare at the upper rear of the socket. I like that, because when I stand it feels almost like a seat, and forces the knee into lock. So I can stand for long periods of time without thinking about the leg collapsing. (Washing dishes, brushing teeth, hanging laundry, chatting with people) He also expanded the bottom end of the socket, so the end of my stump is never touching anything. So maybe it will not cause as much phantom pain. But now that I am home and walking around, I find the little flare seat to be restrictive to my walking. I think I might have a blister already. I wanted to walk to a restaurant for breakfast tomorrow, but not now. I go to Bradley at 10:00 tomorrow and they will remove the "seat" I like so much The whole walking feels more natural with the tight socket. There is much more feed back from the motion of the leg to my thigh. I might even be able to increase the extension resistance a bit. Now the leg sort of slams into full extension. I feel like a Nazi goose stepper. Increasing the resistance makes the leg go forward slower. That makes the feeling at extension more subtle, but also makes walking look more natural. I told Bradley that I walked with a cane and found it much easier. He says that about 80% of his long time above knee patients use a cane, but are capable of walking without one. Sort of like me.
I have worn the new socket all day today. I'll try the same drugs tonight, because I know there should be lots of PLP tonight.
I was able to get the laundry off the line easily. I had a good chat with my neighbor.
I hope the removing of the little seat will allow me good walking.
--
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