We slept well and I got up late. Maddie was waiting to make breakfast.
I still have lots of Phantom Pain. It causes my legs to spasm and shake. The Phantom Pain seems less if I am real busy, or asleep. That again makes me think it is mental, not physical.
We decided to do some shopping. We are low on veggies. Maddie drove us to a nearby shopping center. It is laid out like a huge strip mall. It is about 1 km long and on 3 levels.
She dropped me at the lowest end, and we would meet at the car near the top end. She would shop, and I would crutch.
I started at the lowest end of the mall, and climbed up the stairs, then went down the stairs, then back up the stairs. The stairs are right next to the escalator, so few people were using the stairs.
An old man stopped and asked me if I was practicing. I said yes. He said that my technique looked good, but I need to work on strength. Then he walked off.
The next obstacle was an escalator that was out of service. There were no elevator or stairs visible. The downward stream of people coming down the escalator made it hard for the up people to push past. Me going up would jam the whole thing for a few minutes.
I stopped a guy that collects the used shopping trolleys from the parking lot. I greeted him in Setswana, hoping he wasn't Zulu. We traded pleasantries, then I asked him where the stairs were. He walked and showed me. When he left he parted with the phrase. "Hamba Gahle N'Kosi". That is Zulu for "Travel well my King". That was nice. :-)
Another level of stairs and I was on the final level. I found the beetle and sat inside. I was tired, and my good leg was tired.
Today is a dry, windy, clear, hot day. Temp is 32C (90F). The dark green beetle heated up quickly. When Maddie got to the car we both decided to head home, and do veggie shopping another day.
At home I got the shakes. I took a muscle relaxer, and 2 pain pills. Maddie massaged my stump for awhile. The phantom pain stays away while the stump is being massaged. This proves that phantom pain is physical.
I went to bed and slept for an hour. I awoke to no Phantom Pain. Maddie had lunch ready, and we sat down, Then the Pain started up. It has to be mental if it stops when I sleep. Maybe I just need to be unconscious the rest of my life to remain pain free. There has to be a trigger to start the pain. There also has to be a mental state of mind that tells the pain to take a break. Then there must be a trigger to start the pain.
--
21:00
I am getting ready to shower. Showers are nightmare.
On Monday morning a Handyman is coming to quote on redoing the shower. He will also quote on putting up bed rails, and more grab bars in the bathroom. I want to replace all towel rails with grab bars, and use them as towel rails.
I need to work on the mental aspects of Phantom Pain. I am sure that somewhere is a switch to stop it. I have read many good articles on Phantom Pain .
http://brain.oxfordjournals.org/content/126/3/579
http://www.bbc.com/future/story/20140708-the-man-who-treats-phantom-pain
It seems that when I am unconscious, that there is no pain. It does not wake me up. Some times physical stump pain wakes me, but not the Phantom Pain. When I awake, there is no pain for up to a minute, then it starts. Sometimes when I am very busy doing something, there is no Phantom Pain. Like today on the stairs.
Now to shower....
--
Saturday, 7 November 2015
Friday, 6 November 2015
Day 92 - Boring Friday
We slept late. It was nice.
I have done little today, and Maddie has been in a cleaning mood.
I sat in the garden for an hour. That was nice.
My phantom pain is bad today. Lots of pain, and cramping in the foot that isn't there. The toes cramp in a curl like they are trying to touch the heel.
I did 3 meditations today. I have tried every trick I know to relax the leg, and to both prevent the cramping, and relieve the pain. I have had zero success.
There is also a technique where the sweeping becomes all encompassing, and the entire body is sensed at the same time. This allows larger areas to be equanimitized. I have not done that since my last Vipassana course. It requires lots of practice, and a good environment for me to meditate in.
Tomorrow is a busier day. I want to go to a place with stairs, so I can crutch lots of stairs. I need to get stronger. I am weak.
Getting out of the house will be good.
We need more health veggies also.
Tonight is an early night.
--
I have done little today, and Maddie has been in a cleaning mood.
I sat in the garden for an hour. That was nice.
My phantom pain is bad today. Lots of pain, and cramping in the foot that isn't there. The toes cramp in a curl like they are trying to touch the heel.
I did 3 meditations today. I have tried every trick I know to relax the leg, and to both prevent the cramping, and relieve the pain. I have had zero success.
There is also a technique where the sweeping becomes all encompassing, and the entire body is sensed at the same time. This allows larger areas to be equanimitized. I have not done that since my last Vipassana course. It requires lots of practice, and a good environment for me to meditate in.
Tomorrow is a busier day. I want to go to a place with stairs, so I can crutch lots of stairs. I need to get stronger. I am weak.
Getting out of the house will be good.
We need more health veggies also.
Tonight is an early night.
--
Thursday, 5 November 2015
Day 91 - In Pain, and buying a car.
We both slept OK, and we got up early to drive the beetle to see another car for sale.
Maddie really likes this car. It is a 2005 Hyundai Atos with automatic transmission.
I drove it, and it really would suit us very well. It is easy for me to get into and out of. It is about 10 years newer than some of the Mercedes we have been looking at. It is smaller and gets better fuel consumption. I am concerned about the price. It is about R15,000 more than I want to spend on a car.
Even though it seems a fair deal, it is a lot of money. That R15,000 is money that my prosthesis will not get.
We went home to think about it.
But I find it hard to concentrate, and this is a big decision. My mind is fighting phantom pain.
My toes are in spasm. The car will need to go through a roadworthy check. My stump keeps jerking in sympathy with the phantom pain. If we pay the dealer to do the roadworthy, then they must fix any discrepancies. My toes feel they were run over by a steam roller. That much money will leave me with R2000 total in the bank. This pain is real pain. R2000 won't be enough to feed me for the rest of the month. This phantom jerking takes my full attention. I'll be so short of money if I buy this car. Rubbing the stump seems to help. I found this exact car for sale on the internet for R5000 cheaper. But it is now at another dealer. Maybe I need a pain pill. We call the salesman to talk about why the price has gone up. Rubbing does help the stump to not have pain. The salesman says that the lower price does not include roadworthy checks, license fees and the registration. The pain comes in waves. I need a car, and this is a good car at a fair price. Common sense says to buy the car, and worry about other costs later. I wonder if a constant massage would help with the pain.
I think we will buy the car. I need to maybe again try to meditate the pain away.
--
Maddie, the bookkeeper, has attacked my finances. So far she has found about 4000R discrepancies in my favor.
We dumped out seat cushions and gathered up all the money in the house. She drove the beetle to the car dealer while I laid home in pain and tried to equanimitize the phantom pain.
She got the ball rolling, and paid over half to the dealer, and he started the paperwork, and the inspections. We will pay the remaining amount, and collect the car on maybe next Tuesday.
Maddie really likes this car. It is a 2005 Hyundai Atos with automatic transmission.
I drove it, and it really would suit us very well. It is easy for me to get into and out of. It is about 10 years newer than some of the Mercedes we have been looking at. It is smaller and gets better fuel consumption. I am concerned about the price. It is about R15,000 more than I want to spend on a car.
Even though it seems a fair deal, it is a lot of money. That R15,000 is money that my prosthesis will not get.
We went home to think about it.
But I find it hard to concentrate, and this is a big decision. My mind is fighting phantom pain.
My toes are in spasm. The car will need to go through a roadworthy check. My stump keeps jerking in sympathy with the phantom pain. If we pay the dealer to do the roadworthy, then they must fix any discrepancies. My toes feel they were run over by a steam roller. That much money will leave me with R2000 total in the bank. This pain is real pain. R2000 won't be enough to feed me for the rest of the month. This phantom jerking takes my full attention. I'll be so short of money if I buy this car. Rubbing the stump seems to help. I found this exact car for sale on the internet for R5000 cheaper. But it is now at another dealer. Maybe I need a pain pill. We call the salesman to talk about why the price has gone up. Rubbing does help the stump to not have pain. The salesman says that the lower price does not include roadworthy checks, license fees and the registration. The pain comes in waves. I need a car, and this is a good car at a fair price. Common sense says to buy the car, and worry about other costs later. I wonder if a constant massage would help with the pain.
I think we will buy the car. I need to maybe again try to meditate the pain away.
--
Maddie, the bookkeeper, has attacked my finances. So far she has found about 4000R discrepancies in my favor.
We dumped out seat cushions and gathered up all the money in the house. She drove the beetle to the car dealer while I laid home in pain and tried to equanimitize the phantom pain.
She got the ball rolling, and paid over half to the dealer, and he started the paperwork, and the inspections. We will pay the remaining amount, and collect the car on maybe next Tuesday.
I feel useless. Maddie is so busy, and I lay around in pain.
I did 2 meditations today. One was a good one, and I spent about 30 minutes trying to equanimitize the phantom pain. Sweeping the stump only shows very minor sensations, and I get no feedback from the missing foot. The only sensations the missing foot has, are one that it sends out as pain signals. I can detect nothing except the false pain signal. It is like the pain signals have no source. There is nothing to equanimitize.
--
People that know me personally, know I am a very frugal person, and that I get physically ill when I spend money.
For those that don't know me, just ignore all my rants about money. I have enough money, but I will always complain loud and strong if I have to spend any.
--
--
People that know me personally, know I am a very frugal person, and that I get physically ill when I spend money.
For those that don't know me, just ignore all my rants about money. I have enough money, but I will always complain loud and strong if I have to spend any.
--
Wednesday, 4 November 2015
Day 90 - Boring, busy day
08:00
We both slept well for a change.
Angiosarcoma wasn't even thought about.
Last night one of the private sellers of a car we wanted to look at called, and we will drive there soon to look at the car. He lives a long way away, so we will meet half way. It is good he will drive the car about 100km to meet us.
Maddie asked what "Standby for Bolo" from the last blog means.
In the US Navy, during under way refueling, a ship will pull up next to a tanker and the tanker will refuel the ship while zooming along. To get the big oil hoses across between ships, there must first be a small line thrown across, so they can pull across bigger lines for the big hoses. The way the first small line gets across, is by a big sailor swinging a sandbag on the end of a 2 meter string. He hurls this heavy sandbag at the other ship. That sand bag is called a "bolo". On the tanker, the Captain would use a loud speaker to tell the other ship to "Standby For Bolo". All people on the other ship would all run and hide, or duck down. It was funny to see the Captain of a big ship run and hide behind something. So in Navy talk, "Standby for Bolo" means that a big hurt is coming your way.
--
14:00
We are back after a long drive to look at the one Mercedes. It was not such a good deal. When ever we found a problem with it the guy would say "Don't worry about that, I'll fix it." I think he should have fixed that stuff before showing it to a potential customer. We will have to keep looking.
When I was a child and stubbed my toe, while busy crying, my mother would say "Try to think of something else." Come on..This was her idea of a cure? Shouldn't she do something constructive, like kiss it.
This reminds me of when ever I would cry, my father would say "Stop crying, or I will give you something to really cry about."
What weird solutions my parents had, to my problems.
Maybe my parents thinking could apply to Phantom pain.
I had a lot to say today about different meditation techniques I am using to try to fight Phantom pain. Maddie thought it might be boring to many of the blog readers. I have now started using "Pages". These are separate informational pages that are about a certain subject, and can be accessed by a blog reader "if" they want further information on a subject. This should keep the blogs shorter, and less boring. These pages are listed to the right of the main blog.
--
16:00
We just found a car on the internet. We called the guy, and want to go see it in the morning. It is a 2005 Hyundai Atos Prime with an automatic transmission. A very small car, that we will have to see whether I can get into and out of it. It is a bit above our set price range, but it is much newer, with far less kilometers, gets much better petrol mileage, and will be cheaper to maintain. Both Maddie and I would prefer a smaller car than a Mercedes.
--
17:00
I am going to meditate, and try to reduce the phantom pain.
--
19:00
As you can see, my life is almost normal. With no chemo, and no cancerous leg, I have little to write about. Once a car is bought, then I'll just be fighting the Phantom pains.
Chemo starts again on the 18th of November. Seeing how I cope on crutches with chemo will be the next big challenge.
--
Tuesday, 3 November 2015
Day 89 - Reality of Phantom Pain.
09:00
Yesterday afternoon I had way to much pain. I couldn't function, I got the shakes with the pain, and that was all the world for me. Pain sure focuses the mind. There are no longer world problems. ISIS, Nuclear Iran, US dept, Global warming, and Government interference. All these thing were trivial and could affect me not. My world was Pain, Pain, Pain.
Poor Maddie. She so wanted to help me, but what could she possibly do?
We finally just gave in to the drugs. Thankfully we had prepared emergency pill food. All the pills must be taken with food. I took max of all pain killers, muscle relaxers, and neural blockers. 30 minutes later I fell asleep in a chair. Three hours later I crawled into bed, and sat up on the new wedge we bought. I stayed unmoving for 4 hours, then around midnight, finally laid down. I got up at around 8 this morning. 17 hours removed from my life.
What would I have done without Maddie? I can't imagine. Probably just laid on a very urine soaked bed for 17 hours, and got stomach ulcers of note. Thank You Maddie.
--
11:00
This whole phantom pain is a subject, that even the internet seem to be ignorant of.
I have read many doctor reports, clinical trials, and "cures" for phantom pain on the internet. The only written words that seem even remotely connected to reality, is from amputation bloggers. They may not have any medical training, but they have been there. They understand more about phantom pain than any doctor can ever understand.
I like the word "Grok". That is when your knowledge of a subject is so extensive, that it has become instinctive. No conscious thought is necessary to understand the subject. The knowledge is no longer just mental understanding, but it resides deep in the soul.
No doctor will ever grok phantom pain, unless he looses a limb.
I have spent days analyzing and trying to figure out this phantom pain. It can hurt so bad, yet the pain is focused on something that doesn't exist.
When a lover dumps you, and walks away, the pain can be bad, and that is also not a physical pain.
When you are driving along, and some idiot cuts in front of you, almost causing a collision, a strong, gross, emotional sensation develops quickly. There is no physical reason for the strong anger felt.
If it is not physical, then, it must be in the mind.
I did Transcendental Meditation for 17 years, and Buddhist Vipassana meditation for the last 6 years. Add to this many years of fighting many types of pain, and this Phantom has met its match.
Some of the cause of phantom pain is from actual stimulation of nerve endings left over from the amputation. This pain is difficult to isolate and focus on. Mainly because the pain is not felt at the source of the pain.
For years, I have had many problems with sciatica pain from my bad back. There again, the pain is felt in the back of my leg, but is caused by the pinching of nerves in the spine. Do I try to fight this at the spine that doesn't hurt at all, or the leg which is not the source of the pain? Sciatica is very difficult to deal with mentally.
If it is all in the mind, then it has a problem, because it has met a worthy opponent. I am very good at mind defense and warfare. This phantom pain is in the same threat category as sciatica.
One of the tools Vipassana has taught me is "Equanimity".
By mentally "sweeping" over the entire body, you can note any sensations, both negative (pain) and positive (pleasurable). By noting any sensation, and concentrating and understanding it, it is possible that on the next "sweep", that sensation is no longer detectable. We call that - Equanimitization. A sensation (pain) that has been equanimitized is no longer detectable by the senses.
In Vipassana, we would sit motionless for about 120 hours on a 10 day course. A lot of pain builds up in the back and knees. I got pretty good with equanimity of pain. The better you get with practice, the better you can equanimitize stronger pain. Soon, even gross, solidified sensations become impermanent.
You soon learn that everything, is impermanent.
This technique is used by people like David Blaine. He held his breath for 17 minutes and 4 seconds live on Oprah. The choking, gasping feeling, you get when holding your breath is not a lack of oxygen. It is a carbon dioxide poisoning alarm the body gives. This alarm can be equanimitized.
This skill can also be applied to nonphysical sensations. Fear, sadness or when someone does something that angers you. Instead of a reactive emotion, you can respond with equanimity, and not get angry, because their action becomes a non-event.
Trying to equanimitize sciatica or Phantom pain is a whole different level than simple physical pain. That is a skill I will be working on for the next few days. I may not be able to stop the pain, but I should be able to stop the suffering.
Pain is inevitable, suffering is optional.
Equanimity is one of many mental weapons to fight this Phantom. Some weapons are powerful, requiring strong concentration, and some are weaker, but easier to use.
Phantom Pain, Standby for Bolo!
--
Yesterday afternoon I had way to much pain. I couldn't function, I got the shakes with the pain, and that was all the world for me. Pain sure focuses the mind. There are no longer world problems. ISIS, Nuclear Iran, US dept, Global warming, and Government interference. All these thing were trivial and could affect me not. My world was Pain, Pain, Pain.
Poor Maddie. She so wanted to help me, but what could she possibly do?
We finally just gave in to the drugs. Thankfully we had prepared emergency pill food. All the pills must be taken with food. I took max of all pain killers, muscle relaxers, and neural blockers. 30 minutes later I fell asleep in a chair. Three hours later I crawled into bed, and sat up on the new wedge we bought. I stayed unmoving for 4 hours, then around midnight, finally laid down. I got up at around 8 this morning. 17 hours removed from my life.
What would I have done without Maddie? I can't imagine. Probably just laid on a very urine soaked bed for 17 hours, and got stomach ulcers of note. Thank You Maddie.
--
11:00
This whole phantom pain is a subject, that even the internet seem to be ignorant of.
I have read many doctor reports, clinical trials, and "cures" for phantom pain on the internet. The only written words that seem even remotely connected to reality, is from amputation bloggers. They may not have any medical training, but they have been there. They understand more about phantom pain than any doctor can ever understand.
I like the word "Grok". That is when your knowledge of a subject is so extensive, that it has become instinctive. No conscious thought is necessary to understand the subject. The knowledge is no longer just mental understanding, but it resides deep in the soul.
No doctor will ever grok phantom pain, unless he looses a limb.
I have spent days analyzing and trying to figure out this phantom pain. It can hurt so bad, yet the pain is focused on something that doesn't exist.
When a lover dumps you, and walks away, the pain can be bad, and that is also not a physical pain.
When you are driving along, and some idiot cuts in front of you, almost causing a collision, a strong, gross, emotional sensation develops quickly. There is no physical reason for the strong anger felt.
If it is not physical, then, it must be in the mind.
I did Transcendental Meditation for 17 years, and Buddhist Vipassana meditation for the last 6 years. Add to this many years of fighting many types of pain, and this Phantom has met its match.
Some of the cause of phantom pain is from actual stimulation of nerve endings left over from the amputation. This pain is difficult to isolate and focus on. Mainly because the pain is not felt at the source of the pain.
For years, I have had many problems with sciatica pain from my bad back. There again, the pain is felt in the back of my leg, but is caused by the pinching of nerves in the spine. Do I try to fight this at the spine that doesn't hurt at all, or the leg which is not the source of the pain? Sciatica is very difficult to deal with mentally.
If it is all in the mind, then it has a problem, because it has met a worthy opponent. I am very good at mind defense and warfare. This phantom pain is in the same threat category as sciatica.
One of the tools Vipassana has taught me is "Equanimity".
By mentally "sweeping" over the entire body, you can note any sensations, both negative (pain) and positive (pleasurable). By noting any sensation, and concentrating and understanding it, it is possible that on the next "sweep", that sensation is no longer detectable. We call that - Equanimitization. A sensation (pain) that has been equanimitized is no longer detectable by the senses.
In Vipassana, we would sit motionless for about 120 hours on a 10 day course. A lot of pain builds up in the back and knees. I got pretty good with equanimity of pain. The better you get with practice, the better you can equanimitize stronger pain. Soon, even gross, solidified sensations become impermanent.
You soon learn that everything, is impermanent.
This technique is used by people like David Blaine. He held his breath for 17 minutes and 4 seconds live on Oprah. The choking, gasping feeling, you get when holding your breath is not a lack of oxygen. It is a carbon dioxide poisoning alarm the body gives. This alarm can be equanimitized.
This skill can also be applied to nonphysical sensations. Fear, sadness or when someone does something that angers you. Instead of a reactive emotion, you can respond with equanimity, and not get angry, because their action becomes a non-event.
Trying to equanimitize sciatica or Phantom pain is a whole different level than simple physical pain. That is a skill I will be working on for the next few days. I may not be able to stop the pain, but I should be able to stop the suffering.
Pain is inevitable, suffering is optional.
Equanimity is one of many mental weapons to fight this Phantom. Some weapons are powerful, requiring strong concentration, and some are weaker, but easier to use.
Phantom Pain, Standby for Bolo!
--
Monday, 2 November 2015
Day 88 - Visit to the Wound Care Lady
I slept good, which is not always the blessing you might think. If I sleep lightly, then any pain makes me move, where if I sleep deeply, I can hurt the stump and not wake up. The stump this morning is quite sore, like it was slept on funny.
I keep forgetting to mention that the day I went into surgery, I weighed myself on my good home scales, and was 84.3 kg (185.5pds). The first morning at home after the surgery, I weighted 78.7 kg (173.14pds). That is 5.6 kg (12.32pds) I lost in 4 days. I do not recommend this weight loss program to the average person. It is a bit drastic.
It seems as if 5.6 kg (12.3pds) is little for the big piece of leg they took, but remember that the leg was in a tight compression stocking and a wrap, so there was very little excess fluid in the leg, at the time of surgery.
This morning I weigh 77.8 kg (171.1pds). Both Maddie and I are losing weight with all the healthy eating.
I am anxious to read the autopsy of the leg, to see exactly how high up the cancer had spread.
Today is the visit to the Wound Care Lady. She will open the bandages, and check the stump for any infection, swelling, and any abnormalities. Then she will re-wrap it.
I am treating Maddie to a breakfast at the one hospital restaurant. We also need to get some more prescription pills, and more pee bottles.
We also hope to hear from the one car guy today. Maybe we will go look at that Mercedes.
--
We are back from driving all over.
First we went to the Wound Care Lady. (She is cute. Don't tell Maddie I said that) :-)
She said that the wound looks very good. She is extremely happy. She said she seldom sees such a good healing from a chemo patient. Chemo makes things heal slow. She decided to not put any covering on the leg, just band aids on the wound. Maddie was picture snappy happy.
After the WCL visit we went to the oncologist to confirm the 18 November start of chemo.
Then Maddie drove us to a hospital equipment store. We bought 2 more pee bottles. New bottles were R60, and used ones were R20. So we bought 2 used ones.
They also had a big foam wedge for sitting in bed more comfortably.
Thay also had the long type of crutch. I played with them, and they are more user friendly. They were cheap at R400, but looked very much Chinese plastic quality.
Then my chauffeur :-) drove us to the big pharmacy to get more pills.
Then on the way home with a very tired me, Maddie reminded me, that we should visit the prosthesis guy. His factory was very close.
The prosthesis guy showed us all about how, and why they make prosthesis. He had a top of the range mechanical knee. I really liked the feel and motion of that knee. Very precise and smooth.
This knee is so cool. It reminds me of a mechanical watch, or an aircraft engine.
As the leg swings forward, it shortens by almost an inch. (2.5cm) to help prevent tripping. As the heel hits the ground, the knee locks up solid, so there is no chance of it collapsing with weight on it. Then when the force leaves the heel and moves to the foot, the lock releases, and the knee swings forward till the heel hits again. The electronic bionic knees are more geeky, but a super smooth mechanical motion is a thing of beauty.
Both the Prosthesis guy and the Wound Care Lady stressed that the wound MUST be 100% healed before any attempt to begin building a prosthetic socket. I want one now. :-(
He also sells American style crutches. He cautioned that they should only be used in bathroom functions, and any walking should be with the short crutches.
He also recommended a wheel chair for the days of chemo, and maybe the day after. As much as I hate the idea of a wheelchair, I do know that walking steady with both legs was a challenge after chemo. There would be a crutch crash after chemo if I had to use only crutches.
I have not had chemo for almost 2 weeks, and my hair is growing back and I need to shave daily. My hair is growing back white. Not blond, not gray, but white.
--
I keep forgetting to mention that the day I went into surgery, I weighed myself on my good home scales, and was 84.3 kg (185.5pds). The first morning at home after the surgery, I weighted 78.7 kg (173.14pds). That is 5.6 kg (12.32pds) I lost in 4 days. I do not recommend this weight loss program to the average person. It is a bit drastic.
It seems as if 5.6 kg (12.3pds) is little for the big piece of leg they took, but remember that the leg was in a tight compression stocking and a wrap, so there was very little excess fluid in the leg, at the time of surgery.
This morning I weigh 77.8 kg (171.1pds). Both Maddie and I are losing weight with all the healthy eating.
I am anxious to read the autopsy of the leg, to see exactly how high up the cancer had spread.
Today is the visit to the Wound Care Lady. She will open the bandages, and check the stump for any infection, swelling, and any abnormalities. Then she will re-wrap it.
I am treating Maddie to a breakfast at the one hospital restaurant. We also need to get some more prescription pills, and more pee bottles.
We also hope to hear from the one car guy today. Maybe we will go look at that Mercedes.
--
We are back from driving all over.
First we went to the Wound Care Lady. (She is cute. Don't tell Maddie I said that) :-)
She said that the wound looks very good. She is extremely happy. She said she seldom sees such a good healing from a chemo patient. Chemo makes things heal slow. She decided to not put any covering on the leg, just band aids on the wound. Maddie was picture snappy happy.
After the WCL visit we went to the oncologist to confirm the 18 November start of chemo.
Then Maddie drove us to a hospital equipment store. We bought 2 more pee bottles. New bottles were R60, and used ones were R20. So we bought 2 used ones.
They also had a big foam wedge for sitting in bed more comfortably.
Thay also had the long type of crutch. I played with them, and they are more user friendly. They were cheap at R400, but looked very much Chinese plastic quality.
Then my chauffeur :-) drove us to the big pharmacy to get more pills.
Then on the way home with a very tired me, Maddie reminded me, that we should visit the prosthesis guy. His factory was very close.
The prosthesis guy showed us all about how, and why they make prosthesis. He had a top of the range mechanical knee. I really liked the feel and motion of that knee. Very precise and smooth.
This knee is so cool. It reminds me of a mechanical watch, or an aircraft engine.
Both the Prosthesis guy and the Wound Care Lady stressed that the wound MUST be 100% healed before any attempt to begin building a prosthetic socket. I want one now. :-(
He also sells American style crutches. He cautioned that they should only be used in bathroom functions, and any walking should be with the short crutches.
He also recommended a wheel chair for the days of chemo, and maybe the day after. As much as I hate the idea of a wheelchair, I do know that walking steady with both legs was a challenge after chemo. There would be a crutch crash after chemo if I had to use only crutches.
I have not had chemo for almost 2 weeks, and my hair is growing back and I need to shave daily. My hair is growing back white. Not blond, not gray, but white.
--
Sunday, 1 November 2015
Day 87 - Pain 101
I slept OK, not well. I still have bad phantom pain. The pain is till my broken toes on the missing leg.
Maddie wanted to go to Church this morning, so she was busy with the typical woman fluffing hair routine. She did look nice though.
While she was busy getting ready, I made myself a cup of coffee for the first time in weeks. The biggest problem was moving the full cup to the computer. During this comedy skit, I dropped a crutch. What a mission. I finally ended up smacking the fallen crutch with the other crutch till it got jammed on a cupboard, and I was able to get it up to my hip and grab it.
I was unable to move the coffee cup without spilling, so I found a travel mug that has a lid. I decanted the coffee into it, then sort of held the cup and crutched at the same time. It felt more like crutching the coffee, and the body coming along, was a secondary thing.
While I was in the hospital, there was a fat, spoiled teenager in the next bed. He had broken his ankle. After surgery he was moaning lots.
When the nurse comes by every hour, to take blood pressure and temperature, she always asks if I have nausea, and what is the current level of pain I am feeling. They explained the pain scale to everyone in the ward. She came by and asked my pain level. I told her about a 3, so hold my pills. I may want them later.
The nurse asked the kid his pain level, and he whines it is a TEN. I told him don't say it is a ten, but tell the actual truth. He then whined louder "It is a TEN a TEN."
I told him they just cut my leg off, and the pain never got above a 7.
But he insisted the pain level was a ten, so the nurse presses the button and Doctors zoom in and drug him unconscious.
Pain is a subjective thing. Some people suffer some pains better than others. A person may be able to handle steady, constant pain, but sharp, stabbing pain bothers them much more, or visa versa.
Unfortunately I am a bit of a pain expert. I wish I was ignorant of pain like that teenager was. I suffered migraines for many years, I suffered lower back pain for many years, and now I have cancer and they chopped off my leg.
There is a pain scale, that attempts to quantify pain into usable values. Different Doctors have different pain scales, and different types of pain, affect different people, differently.
Basically a 0 pain level is no pain or discomfort.
1-2-3 - are more of discomforts, than actual pains.
4-5-6 - are real pains, that significantly affect your daily activities, and your quality of life.
7-8-9-10 - these are severe and disabling. No daily routines or actions are possible.
I have arthritis in my one hand. It is a constant discomfort. I can still do anything with that hand, but I am conscious that it is unpleasant to do that action. I call that pain a 2, and sometimes a 3.
When I stub a toe, it is like a 5 for a few seconds, then quickly drops to a 2 or 3.
A bee sting is a like a 4 that soon drops to a 2 or 3.
The sciatica from my back was often a 5 or 6. It would make me think of little else than the pain. No coffee, no lunch, and normal daily tasks are impossible.
After the leg amputation, the pain was a 7, but drugs took it down to a 3. I never suffered much from pain after the amputation. The Doctor that did the surgery said he believes that pain is a strong negative to quick recovery. He never wanted me to feel more than a 3. This phantom pain becomes a 4 or 5, and when Maddie talks to me my mind quickly drifts to the pain.
The worse were the migraines. When ever a migraine snuck up, and got out of control, it was a real 7 or 8. There was no other thought on earth but the stupor of pain. It was my entire world.
I had one migraine that was a 9 or 10. It was life threatening. Suicide was a pleasant relief that I was unable to perform due to the pain.
Some pills like Celebrex are wonderful additions to my life. I take 2 a day, and they seem to lower my whole pain down 1 or maybe 2 points, but only if the original pain is below a 4.
I have been taking way to much Tramacet lately. Tramacet lowers steady pains down a few points as long as the pain is steady, and below a 6 to start with.
When I get a sharp phantom pain, the Tramacet seems to do little. But it is very hard to tell what it would have been with a different dosage.
Ok, now back to the real world.
Maddie is back from Church with food shopping. She showed what she bought, and all of a sudden I am hungry.
I put the carpet sliders on our 2 living room chairs, so they slide easier on the tiles.
--
Evening -
Maddie is busy making supper. She just swept the driveway. I am a real slave driver.
We just went for a walk. About 50 meters to the gate and back, twice.
I lengthened the crutches, and they are more comfortable, but now they sometimes catch on the ground when bringing them forward. Whether I leave them this long will depend on whether I trip tomorrow or not. :-)
Tomorrow morning at 11:00 is an appointment with the Wound Care Lady so she can inspect and re-wrap the stump. I am going to nag her about a prosthesis. But I am sure they will want another 2 weeks for the wound to heal.
I am still having bad phantom pain. It is a steady pain level 3 with a jump up to 5 every minute or so. It is very distracting to have a strong pain every few minutes. I spend much time anticipating the pain.
My pain killing tablets seem to reduce the steady pain to about a 1, but they have little affect on the strong sharp pains. My sleep comes in many short naps.
I did a total of 30 minutes of "mirroring" today. If it helps, it will be a slow solution.
Maddie just served supper. I challenge anyone to find a healthier supper :-)
Yummy.
--
Maddie wanted to go to Church this morning, so she was busy with the typical woman fluffing hair routine. She did look nice though.
While she was busy getting ready, I made myself a cup of coffee for the first time in weeks. The biggest problem was moving the full cup to the computer. During this comedy skit, I dropped a crutch. What a mission. I finally ended up smacking the fallen crutch with the other crutch till it got jammed on a cupboard, and I was able to get it up to my hip and grab it.
I was unable to move the coffee cup without spilling, so I found a travel mug that has a lid. I decanted the coffee into it, then sort of held the cup and crutched at the same time. It felt more like crutching the coffee, and the body coming along, was a secondary thing.
While I was in the hospital, there was a fat, spoiled teenager in the next bed. He had broken his ankle. After surgery he was moaning lots.
When the nurse comes by every hour, to take blood pressure and temperature, she always asks if I have nausea, and what is the current level of pain I am feeling. They explained the pain scale to everyone in the ward. She came by and asked my pain level. I told her about a 3, so hold my pills. I may want them later.
The nurse asked the kid his pain level, and he whines it is a TEN. I told him don't say it is a ten, but tell the actual truth. He then whined louder "It is a TEN a TEN."
I told him they just cut my leg off, and the pain never got above a 7.
But he insisted the pain level was a ten, so the nurse presses the button and Doctors zoom in and drug him unconscious.
Pain is a subjective thing. Some people suffer some pains better than others. A person may be able to handle steady, constant pain, but sharp, stabbing pain bothers them much more, or visa versa.
Unfortunately I am a bit of a pain expert. I wish I was ignorant of pain like that teenager was. I suffered migraines for many years, I suffered lower back pain for many years, and now I have cancer and they chopped off my leg.
There is a pain scale, that attempts to quantify pain into usable values. Different Doctors have different pain scales, and different types of pain, affect different people, differently.
Basically a 0 pain level is no pain or discomfort.
1-2-3 - are more of discomforts, than actual pains.
4-5-6 - are real pains, that significantly affect your daily activities, and your quality of life.
7-8-9-10 - these are severe and disabling. No daily routines or actions are possible.
I have arthritis in my one hand. It is a constant discomfort. I can still do anything with that hand, but I am conscious that it is unpleasant to do that action. I call that pain a 2, and sometimes a 3.
When I stub a toe, it is like a 5 for a few seconds, then quickly drops to a 2 or 3.
A bee sting is a like a 4 that soon drops to a 2 or 3.
The sciatica from my back was often a 5 or 6. It would make me think of little else than the pain. No coffee, no lunch, and normal daily tasks are impossible.
After the leg amputation, the pain was a 7, but drugs took it down to a 3. I never suffered much from pain after the amputation. The Doctor that did the surgery said he believes that pain is a strong negative to quick recovery. He never wanted me to feel more than a 3. This phantom pain becomes a 4 or 5, and when Maddie talks to me my mind quickly drifts to the pain.
The worse were the migraines. When ever a migraine snuck up, and got out of control, it was a real 7 or 8. There was no other thought on earth but the stupor of pain. It was my entire world.
I had one migraine that was a 9 or 10. It was life threatening. Suicide was a pleasant relief that I was unable to perform due to the pain.
Some pills like Celebrex are wonderful additions to my life. I take 2 a day, and they seem to lower my whole pain down 1 or maybe 2 points, but only if the original pain is below a 4.
I have been taking way to much Tramacet lately. Tramacet lowers steady pains down a few points as long as the pain is steady, and below a 6 to start with.
When I get a sharp phantom pain, the Tramacet seems to do little. But it is very hard to tell what it would have been with a different dosage.
Ok, now back to the real world.
Maddie is back from Church with food shopping. She showed what she bought, and all of a sudden I am hungry.
I put the carpet sliders on our 2 living room chairs, so they slide easier on the tiles.
--
Evening -
Maddie is busy making supper. She just swept the driveway. I am a real slave driver.
We just went for a walk. About 50 meters to the gate and back, twice.
I lengthened the crutches, and they are more comfortable, but now they sometimes catch on the ground when bringing them forward. Whether I leave them this long will depend on whether I trip tomorrow or not. :-)
Tomorrow morning at 11:00 is an appointment with the Wound Care Lady so she can inspect and re-wrap the stump. I am going to nag her about a prosthesis. But I am sure they will want another 2 weeks for the wound to heal.
I am still having bad phantom pain. It is a steady pain level 3 with a jump up to 5 every minute or so. It is very distracting to have a strong pain every few minutes. I spend much time anticipating the pain.
My pain killing tablets seem to reduce the steady pain to about a 1, but they have little affect on the strong sharp pains. My sleep comes in many short naps.
I did a total of 30 minutes of "mirroring" today. If it helps, it will be a slow solution.
Maddie just served supper. I challenge anyone to find a healthier supper :-)
Yummy.
--
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