Dec28 - Laundry Trolley and the NSA

I slept well. I took two pain killers, and 2 muscle relaxers at 22:00. I sat in my Zero gravity chair and played Sudoku till about 23:30. I woke up at almost 2:00, peed, then went to bed. Up at 6:00 all ready to charge the day.

I think that the advice about the bed being ONLY for sleeping is good advice. Sit someplace else while waiting for sleep to come. That way the bed is no longer a bad thing. It is a sleep thing.

I spent yesterday working on a laundry trolley to move the laundry basket around.
Plan A was to build a trolley out of PVC pipes.
Plan B was to use aluminum and PVC pipes.
Plan C was to just put wheels on the laundry basket.

My friend suggested making is scalable. You don't know what you will want to move in a weeks time. So plan D was to use a refrigerator trolley to be able to haul anything.

First I had to build some steerable front wheels, so I could pull the trolley with a rope. The end result looks like this.

The next problem is hanging laundry up while on crutches, with no available hands :-)
Last laundry day was hell. I came so close to falling a few times. Once I started falling and grabbed a clothes line, and it snapped. Pure luck had a car there for me to fall onto.
I decided to use the American style crutches. They are much more stable. But I could not pull the trolley with them, so I put them on the trolley, and pulled it with my normal crutches.
I then decided to lower all my washing lines. That 2 minute job took 20 minutes. Grrrr. I have 3 lines going between the carport posts. The cars must fit under the lines.
Next was how to hang something like a t-shirt up on a line that is just above head height while on crutches. I moved my car forward a bit, so I could lean on the front bumper. This gave me access to about 1 meter of the one 7 meter long clothes line, while I rested the crutches against a wall. 
Now I got clever. I would hang up one t-shirt nicely, then scrunch it up along the line. Then hang the next t-shirt neatly, then scrunch it up along the line. Soon I had 7 t-shirts all scrunched up in the one meter I could reach. Then I got on the crutches and unscrunched all the t-shirt along the line. That was easy to do on the crutches.
I used the same method for the underwear and towels. I used the crutch tip to unscrunch and slide the clothes along the line.

There is one sock, and a pair of underwear that are drying on the ground in the dirt. That is their punishment for being obstinate and rebellious. I do not accept commands from a sock. I hope it has learned it's lesson.

My home computers all run the Linux operating system, and Firefox web browser. The NSA (US National Security Agency) spy people built a program called SE-Linux to help track bad software, and most Linux systems use it.
  As of today, www.blogger.com ( A Google app) will no longer accept images for blogs from any browser except Google's Chrome. So I tried to load Chrome on my computer.
 SE-Linux refuses to allow Chrome. It says it is malware, not safe. So I have to turn off a security program to allow me to load Google Chrome, to allow Google's blogger.com to accept images for my blog.
That is scary in so many ways. Just thinking about the various ramifications of all that makes want to become a technophobe.

--

Dec 26 - insomnia

The last few days have been rough.
 I seem to be living in a binary life. I am either exhausted, tired, and can't sleep, or I am sleeping my life away.
I am probably getting the right total amount of sleep, over the period of a week, but is is in bursts. I can get zero sleep for 36 hours, then be out for 20 hours.
 Yesterday I never even opened the curtains or windows. It really didn't matter if it was 2 in the morning or 2 in the afternoon. That day time, night time thing is for other people.
Two nights ago I took a pain killer, a sleeping pills, and a muscle relaxer at 20:00. At  22:30 I took another sleeping pill, and another pain killer. I listened to music, and played Sudoku till 02:30 and was still wide awake. I took a shower, and drank some hot horlicks. I fell asleep around 04:15, and awoke at 15:30. I had coffee and an egg, then napped till 18:00.

Today I got online and Googled "Chemo insomnia". Wow. Lots of info there.

Three quarters of cancer patients and survivors treated with chemotherapy suffer insomnia or sleep disorders that often become chronic conditions, hindering patients’ ability to fully recover, according to scientists at the University of Rochester Medical Center.
 37 percent of participants suffered from insomnia symptoms and another 43 percent had insomnia syndrome, as categorized by the Hamilton Depression Inventory, a widely used measure for symptoms of depression. These patients had difficulty falling asleep and staying asleep at least three days per week.

Nothing new to me there.
They say to try to never nap during the day. If you do only shorter than 30 minutes.
Try to go to bed the same time every night, and set an alarm and get up at the same time every morning.
Do NOT lie awake in bed for more than about 20 minutes. Get up and go somewhere else. Bed is for sleeping only.
Do not have anything to tell what the time is. It only makes it worse.

OK...I totally don't do any of those. I will need to start on those, but I don't think they will help much in real life.
My 2 clocks on the wall, and my projection clock on the ceiling, and my tablet, computer, and cell phone all have to go out of the bedroom.

Then I decided to Google "Phantom pain amputation insomnia". More bad news.

Phantom limb pain can be mild to agonizing and even disabling for some. And it may lead to a lifelong battle with chronic pain and insomnia.

Two-thirds of amputees complain of sleep onset and maintenance insomnia; in those who suffer from phantom pain the percentage increases to 80%.

I guess that since I am doing chemo AND have phantom pain, my days of normal sleep are over.  :-(   or should I say    =-(

Today I had coffee with a friend. Then we did the shopping thing again. She knew most of what I wanted, so I mostly just slowed things down and got in the way. The shopping would have gone much better if I had sat in the car and read a book. But I now have lots of food.
Just what I need. I weighted 80.6 this morning. Up from 79.8 after visiting Maddie in George.
Not having Maddie to blame things on is frustrating. It is terrible to have to take responsibility, for your own actions.

I have been trying to learn more about layer 3 IP traffic encryption. I want to be able to encrypt all traffic between any of my VPSs or computers.

Dec 22 - Blood test day, and thoughts of suicide.

I only got to sleep at 3:30 this morning, but then slept til 10:30. So I guess 7 hours is good sleep, even if it is at the wrong times.

Today was blood test day. I will get the results before chemo tomorrow. Chemo is at 10:15.  I need to load the wheelchair again into the car.

I crutched to the blood test place. It is about .8km. Then I went to a restaurant nearby for a 13:00 breakfast, then crutched back home. 2.03km total. My longest crutching to date.

Today I got medical aid approval for all my prosthetic treatment. The total medical aid will pay the first year will be about R100,000. But the knee that was approved is less than the one I wanted :-( I'll need to add about R22,000. The foot is the one I wanted, and the socket making is good. The dates on the approval were wrong. It said the approval expires Dec 30 2015. I'm sure they meant 2016. I called the prosthesis place, and they will check into it.
--

Perhaps now days, in the new, modern world of instant gratification, people are looking for faster solutions to their problems. Some things are not solvable quickly. Like Angiosarcoma, or a leg amputation.
 Is this one reason for the high suicide rate among teenagers? They want a problem solved NOW. Suicide solves the problem NOW.
Instant gratification, using a permanent solution to a temporary problem.

One reason (??) for teen suicide is teen homosexuality. Some kid is gay, and tells his best friend who blabs it all over school, and the shame and embarrassment is to much to bare. The instant solution is suicide. There seems to be no thought that "This too shall pass." Children are not taught about solving problems anymore. They think if the answers are not found at https://google.com, then there must be no answers.

Our society has a taboo against suicide. Is this just a carryover from what ever religion we were raised in? Many people say they don't understand suicide. Probably because they never discussed it, or thought about it.

I don't think anybody ever commits suicide because they want to die. They do it because of pain. Real, or perceived. This pain can be emotional, spiritual, or physical.
One of my heroes, Adolph Diesel, committed suicide because of the pain of migraines. I can sympathize with him.
Many people have killed themselves when diagnosed with cancer. Cancer patients have a 5 times greater chance of committing suicide that the normal population. Again, I can sympathize with them.

Are cancer suicides really suicide, or does the phrase "death with dignity" fit the action better.
Is it wrong, when you see you are dying, and you think that God is not the cure for cancer, God is the reason you have cancer. He could cure you with a snap of his fingers, but he doesn't. When God is firing you from the human race, maybe it is the time to tell God "You can't fire me... Because I quit!"

Have I ever thought of suicide?
Yes.
Many times.

The thought of suicide on a long, dark, lonely, painful night is a way of putting ME in control of my life. No matter how bad the pain, or the cancer, or the crappy lifestyle, I always have a Plan "B".
I have an option.
I have a choice.
Many times I have made the decision to see if the pain will go, and tomorrow will be better. Maybe the pain is temporary (ish), and the suffering will be gone.

I hope that tomorrow will be a better day. Even though I have chemo tomorrow.
I hope tonight will be a better night. Even though I have a lot of phantom pain now.
I hope that I will have many happy years with Maddie and my friends. Even though I have a very aggressive cancer.

So far I have never been quite ready for that final act. Maybe I am just not ready to face what may be a final disappointment.

I wish many teens would consider suicide as a Plan 'B', and not as a solution to a temporary problem.
--

Dec 20 - 04:10 in the morning

I can't sleep. Lots of phantom pain.
At 21:30 I took 2 Robaxin, and a sleeping pill. AT 22:00 I was in bed. I played Sudoku till about 23:30. There is so much pain... then I started listening to loud music. It is like my goal shifted from trying to sleep, to relieving the pain.
AT 3:15 I got up, made hot horlicks, and tried to read in the big chair. I am so tired. I can barely hold my head up, and the pain is worse. Maybe the pain is a function of how tired I am. I had no pain most of the day. Now it is very strong and consistent.

I just made a big peanut and jelly sandwich. It was good. Now I am making a toasted tomato/ham sandwich with strong mustard I bought today.
I am eating more between 4 and 5 in the morning, than I did the whole day before.

Wow, my sinuses are open and clear. Strong mustard.

My head keeps nodding...then the pain hits, and I am wild awake. This life sucks. Last night I had another crying session. For no reason I start crying. I bet these are all symptoms of depression or something. I don't think I am depressed, because most of the day I was fine. I went shopping with a friend. I crutched and she ran around like a hunting dog finding all my stuff I wanted to buy. She was a blessing. My previous attempts at shopping by my self were not overly successful. I'm glad for the mustard.

There are many VPS companies that now only do ipv6. Japan,  Germany and USA are officially out of ipv4 addresses. Because of the extreme number of ipv6 addresses, the VPS companies don't have the address overhead like they did with ipv4. There are many VPS companies selling VPSs for 2 US$ a month. That is cheap. It is amazing you can get a computer for that price.
The internet backbone is ipv6, and many corporations are ipv6, but ISPs are slow to adapt. The transition from ipv4 to ipv6 can be technically challenging, and many ISPs just don't have the expertise. Also many have lots of money invested in old ipv4 addresses, and now ipv6 addresses are almost free.

I want to build a small trolley out of pvc pipes to carry my laundry basket and the garbage bags.

My friend wants to do something today. I will probably not get any sleep tonight, so I don't know how that will work.

My solar batteries are old, and need replacing. There are some good new batteries available, but they are expensive.

Why am I writing this crap on an angiosarcoma blog? OK I quit.
--

Dec 17 - Visit to coning school.

I slept well last night. About 16 hours. The night before, I sat listening to loud music til 3:30. On the internet some guy said that loud music will stop phantom pain.
I think that any strong sensory input will stop the phantom pain, but any strong sensory input will also make sleep impossible.

I have a coning lesson today. The next step on the jouney.
--

I'm just back from Bradley's prosthesis factory. He wasn't there, but I chatted lots to a younger guy.
He looked lots at my stump. He was really rough with it. I was surprised. He said that he does that to check the sensitivity and pain levels. He said that I was in good shape. He was very happy.
He said that some people have strings sticking out of the scars for months.

He showed me how to wrap the stump. Very tight at the end of the stump. Again I was surprised. Loose at the top of the thigh. No wrapping around the waist. He said that the way he showed me is better if re wrapped often. He then unwrapped it, and massaged it. Very roughly. Then wrapped it again, then unwrapped it, massaged it roughly, then had me wrap it. I didn't do so good and redid it.

The whole purpose of coning is not what I thought. The purpose is to force the building of some paths for the return of the blood and lymph out of the stump. Once good drainage is formed, the leg size should stabilize. He said that once the leg drains well, and the leg size stabilized, the socket can be built in one size, that shouldn't change much during the day.
Since I have a large variation in the size of my stump between morning and evening, it shows very poor drainage, and we need to work lots on that.

So the length of time I'll have to do the cone wrapping is dependent on the formation of new blood vessels and lymph vessels. He says to measure the circumference every day at the same time to see when it stabilizes. He has seen some people that never have the drainage form, and they can never wear a prosthesis. But usually it takes about a month.
I will see him again in mid Jan.

He took me to talk with another patient. This was an old black guy from Zimbabwe. He lost his leg 3 years ago above the knee from diabetes. He was wearing a prosthesis for the very first time today. He showed me he could stand very securely, but had to hold on while walking. He was using a Osser Balance Knee. That knee is a very good "value for money". The cheapest 4 bar, polycentric, hydraulic knee.

The young guy had me feel the knee. It was warm from the hydraulics. He said that this knee will get warm if used lots, so is best only for low activity levels. He said if it is used for down hill walking it can get very hot.
We then left the Zim guy.

I chatted more to the young guy. He said that I would probably get a knee a bit better than the Zim guys. He said the knee they want to give me is a Osser model 2000. It has a triple hydraulic system, and is for unlimited walking. He said that if It gets hot with me, there is a 2100
model with much bigger hydraulic reservoir.

 This knee has a function that if any weight is put on the heal, the knee locks tight, so the leg is very secure, and won't collapse. This also good for stumble recovery. When the weight is shifted to the toe, the lock undoes, and the hydraulics control the speed of the leg swinging forward. Also the hydraulics recognize when the leg is bent, but weigh is on the foot. It then limits the bending rate with hydraulics. This is for standing up and sitting. So it looks natural to stand, sit, or kneel, but the rate is a set rate, so to look natural, you must move at the rate the hydraulics is set for. The 2000 allows a knee bend of 160 degrees. Great for kneeling.
The 4 bar system also means the total leg length gets shorter as the leg bends. There is less chance of a toe strike while walking because the leg is shorter when the leg swings forward.
The word polycentric means the bearing surface of the knee shifts as the knee bends. Your real knee does the same thing.
I like the fact that all these features are mechanical and no batteries required. The fancy bionic knees need charging every night.

The young guy explained how we would not be swapping knees for about a year, as I would not have enough experience to notice the subtleties of the different knees.
He also explained that the Zim guy will battle because his hip flexors are very tight. He has not been doing the exercises, and stretching.
We then talked about the stump socket. They have had good success with vacuum systems. The socket is held onto the stump with vacuum. 

Once coning is done, it will be days till a good socket is made, and I'll be walking soon after. I can't wait.

I am having a problem with some basic things around the house. I need a small trailer/garden cart. I could then crutch forward, then pull it with a rope. I am thinking about taking out the garbage, and doing laundry. Both are now almost impossible.

That is enough of my mental ramblings about prosthesis.

PS...(There is still the elephant in the room.)

Dec 15 - Wound Care and Chemo day

Smooch Smooch

I had a terrible nights sleep, finally asleep around 02:30. Up at 07:30.

My wheelchair crutch holders are great. I need to clean them up a bit.

At 9:30 I went out to the car and put the wheelchair in it. I sort of have a way figured out. I use the small anti tip wheels to roll on the floor of the car, so the wheelchair rolls on those tiny wheels. To get it out I just pull, and it falls on the main wheels. Not elegant, but possible for me to load myself while on one leg.

I arrived at the WCL (wound care lady) at 11:00 for a 11:30 appointment. AT 12:15 still no sign. The receptionist said she had 2 trauma emergencies, and I was 4th behind them. I was just telling Maddie about the wait, when the WCL walked past. She stopped, looked at the stump, smiled and said it looked perfect, and I could start coning this afternoon. I told her I had chemo later, so she said that she would call the prosthesis people and tell them to liaise with me and I was cleared for coning. I don't need to see here again. :-) and :-( She was nice. She said I should drop by in the new year and say "hi".
I asked her about the stitch string sticking out at the end of the scar. She said it was the main knot on each end, and to leave it alone. She said it will never pull out till all the knot inside had dissolve completely. I asked about the redness around the string, and she looked and said it was just irritation, not infection. Keep it clean and Don't mess with it.

I then drove to the local Hospice for a cheap lunch.

Then back to the chemo place. I got the wheelchair out of the car by myself. Then I was pushing myself up the long ramp to the chemo place. There were 2 white guys sitting on the wall edge of the ramp, both on their cell phones. Another white guy was sitting smoking. I pushed and struggled, slowly up the ramp past them, and they just looked at me. Then about 15 meters away was a black guy on a scooter. He stopped the scooter, and jumped over the wall and pushed me the rest of the way, then he turned, jumped the wall, and got back on his scooter and was gone. The 3 white guys were still sitting there. It would have been a good time if I was a suicide bomber to rid the world of some dick head scum.

I am starting to think about how you really don't want to mess with a guy with cancer. He may just decide the remaining few months of his life are worth taking you out. His final contribution to improve society.

It is cool having my crutches with the wheel chair.
The chemo place was very busy. The normal nurse was on leave, and a substitute nurse was there. She was doing everything right, but a bit slow. Nothing was ever in the first drawer she looked in... things like that. I sat next to a fat lady that I sat next to last time. We chatted a bit.
Before the nurse plugged me in, I grabbed crutches and went to pee, then put the crutches back in their tubes.
I got plugged in, and all was fine till the Paclitaxel. Then I passed out.

 I awoke about 1 hour 30 later. The IV was out, and I was the only person left. The nurse came over and said that she still had another hour of stuff to do, and I should just take my time.
I slowly woke up, and got into the wheelchair. I really don't think I could have handled the crutches then. I stole a cookie (chocolate with chocolate chips) on the way to the toilet. I washed my face, and tried to wake up. I went back to the main room, and sat awhile, then I said "Goodbye" to the nurse.

On the way out, a female security guard stopped me, and said she would push me to the car, help with the wheelchair, then pay the parking. With her help it was easy to get the wheelchair in the car, I gave her a R20 to pay for the parking, and told her to keep the change. She brought back the card, and I drove out. Very nice of her.

I was feeling good, and not to tired. But about 5 minutes later I felt dizzy. I pulled into a small shopping center. Right in front was a handicap parking. I parked and sat back, closed my eyes, and relaxed. After awhile I felt better, and noticed I was in the parking for a pizza place.  Special 2 large pizza for R110.
I cannot deny divine intervention, so I crutched in and ordered. When it was ready a guy brought them out and sat them on the front seat. I drove home.

A very long day. I see I missed 2 phone calls from my friends in Texas :-(. It must have been when I was on the Paclitaxel. Nothing short of a tactical nuke would have stirred me then.

I ate some pizza, and now (20:00) am headed for bed.
--

Dec 13 - Home in Pretoria

I just arrived in my house in Pretoria.
The flight from George was OK. Maddie took me to the airport many hours early. ( :-) Thank you Maddie)
We had a very nice breakfast, the ground staff did all they were supposed to, and I got on the plane just before the herd.

The ground staff at Johannesburg airport were up to scratch also, and I was soon collected by the taxi driver.

On arrival at home the first thing I did was go start the cars. Well, try to start the cars. The new Atos battery was dead. Like 100% dead.
Maddie!... Oh...
There is no Maddie to yell to for help.
 Atos is now on charge. The beetle started right up.

I then battled to simply get the suitcase up on the bed.
  Maddie!..Oh...
 I unpacked all by myself. First some new suction grab bars. I went and stuck them in the shower, and 2 minutes later, they fell off. One hit my shampoo and spilled it all out on the carpet at the exit from the shower. So now right, just outside the shower is a big puddle of shampoo. Just what a paranoid shower person needs.
Maddie! Oh... :-(
--

The Atos just started, and I let it run a bit.
I tried to clean up the shampoo.
I am hungry..
Maddie!...oh...
Now to try a meal on my own. The first in almost 2 months.
i think something simple like pilchards on toast.
--
Pilchards on toast worked. Then Bran cereal.
Now shower then bed.