Dec 30 - Chemo chats and disability parking

09:30
  I am using my cell phone to write this while getting chemo.

 The topic amongst local chemo getters now, is of using small fish to clean off dead skin.
The chemo room is full. 7 people all getting chemo. Chemo people are allowed to talk about stuff that would be taboo in normal society.

One guy was telling about his second colon surgery. While he was unconscious on the operating table the surgeon collapsed dead from a brain aneurysm. They had to get another surgeon in quick to finish the surgery.

Another lady just told about her heart attack. She was just about to be released from ICU after throat surgery. ICU is a great place to have a heart attack.

We just finished talking about the methods for colostomy patients to stop shit coming out all over clothes. The one guy just showed everybody his colostomy bag and how it works. He removed the bag and we could see the inside of his colon.  Imagine showing your shit in public to normal people.  He eats many small meals a day. Certain foods will kill him. He has no stomach, so all nutrition must come through the intestines. One thing he hates is the fact that it takes almost one and a half hour per day of his wife's time to change and clean the bag, and the socket. He can only do some of it, but someone else has to do the rest.

Everybody in this room is intimate with the dying process. Experts on dying. The old man next to me had a PET scan a few days ago. The oncologist just told him today, that is the last chemo for him. It isn't working. There is no "Plan B".

The only way to know more about death, is to die.

Yesterday I was online in an amputation internet chat room. I hoped to learn about things to help me get around the house. The topic then was leaving the bathroom door open. Often the wheelchair blocks the door. Most amputees  on the chat room had completely removed the bathroom door.

One lady was an above knee amputee, and she gave a party for all her friends to come over. They all had to use the guest toilet next to the living room, with the door having been removed. It was a poo party. There were many humorous stories from that evening.

 The toilet paper was kept on the coffee table. So if you needed some, someone would bring you how much you need.
Learning humility, being dependent, and how to be humble. The whole purpose of the evening was to introduce her friends, to her new way of life.

OK...I just woke up. The Paclitaxel hit me hard. Now crutch to pee, then to the car, then home.

--

Later

Here in South Africa there is a confusing situation with car parking for people with one leg. But first some definitions:

Handicap = Any physical or mental defect, congenital or acquired, preventing or restricting a person from participating in normal life or limiting their capacity to work.

Disability = Is the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, or some combination of these.

Paraplegic = Complete paralysis of the lower half of the body including both legs, usually caused by damage to the spinal cord.
 
The use of handicap/disabled parking spots are defined by the policy of the store or shopping center.

The South African Government has laws regarding Handicap person parking. But only on Government property. I once parked in a spot with a wheelchair sign on it, and got out with my crutches. A car guard said it was for Handicap people only, and I should move my car.  I moved my car to a nearby spot.

At the local shopping center there is special parking for "Paraplegics Only". It has a big painted wheelchair on it. A one leg person in a wheel chair is not welcome in that spot.

Disabled people do not have to be handicapped, especially if they can find a way around their disability.

 I am Disabled. Not Handicapped. Disabled because I am missing a leg, but not handicapped because I can make a plan around my disability. (Usually)
I feel that soon after chemo I am handicapped.

The local Hospital where I do my chemo has Disabled parking. It is marked with a large painted wheel chair. I use the special parking because it is a long way to crutch, and after chemo I don't want a long balancing act to get to the car. 

The hospital does distinguish between Disabled parking and wheelchair parking. Wheelchair parking is much wider to allow the loading and unloading of the wheelchair. I try to use the narrow Disabled parking.

At the local Hospital you never see anyone abuse the disabled parking spot. The disabled parking seems much more of a real need than at the shops.

 At the shopping centers you sometimes see a rich, healthy person in their Mercedes.

When this guy was approached by the lady with a wheelchair in her car he answered. "F**K of! Do you know who I am?" He waited another 10 minutes till his wife came out with the shopping. I am so sure he is South African Government.

This cop got coffee and a roll. When approached, he answered that he could park anywhere he wanted, anytime. And in South Africa, he can.

 US Social Security considers an amputee "disabled" if : Amputation of one or both legs at or above the ankle. You also must not be able to walk effectively. “Ineffective walking” generally means that you have stump complications that don't allow you to use prosthetic device effectively and/or you need to use both your hands to handle a walker, two canes or crutches, or a wheelchair.

The UK Government said you are not considered disabled, if you are able to do the following:
If you can stand, then move 200 meters, either aided or unaided.
 They have now changed the wording to 20 meters. Many people with disability pensions now lose then.

Disability means different things in different countries.
 --
Jokes

 Is karate for amputees called partial arts?

 They say: "Time heals all wounds."
Doesn't help amputees much though.

 I invented a sandal for people with one leg.
It was a flop.



--
Poem

And when I reach the other side,
I'll find a place to rest my spirit, if I can.
Perhaps I may become a pilot again,
Or I may simply be a single drop of rain.
But I will remain.

This comes from the song "Highwayman".  I think this refers to the conservation of energy theory in physics. Your life force (soul) is energy. It can never be created or destroyed, but can change form. Mass and energy are interchangeable.

--

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.

Dec 11 - Botanical Garden in George.

We were up at 7 for a berry smoothie. Yummy.
We decided on the wheelchair instead of crutches for the gardens.

Then as soon as we got all our ducks in a row we headed for the Botanical Garden. It is actually only about 3km from the house.
It is 55 hectares (140 acres). It is located on the site of the place that William Burchell stayed for many years doing plant and animal research from 1811 to about 1830.
He named many species of ants, birds (Burchell's Coucal), and animals (Burchell's Zebra).

The Garden has 3km of wheelchair paths. We checked it all out. Me leisurly, sitting, and gawking, and poor Maddie panting like a steam engine, pushing me in the wheelchair.

We went to a bird hide and looked at birds.  I loved all the flowers.

There was a pair of double collared sunbirds. (FYI: I didn't take this picture)

We then went for coffee at the small cafe.

 Here is a good view of the mountains, and my cute steam engine. :-)

We saw a young Morhen. He was so tame. He walked under my wheelchair.  I am glad I don't have to buy shoes for this guy.

Maddie then had to go home quickly. She left me in a wonderful spot. I sat and looked at nature for an hour. Another Morhen came by. He walked all around me. It was a male in breeding plumage. I watched him closely, waiting for him to step on his own feet and trip. He never did.

We then found a picnic spot, and ate the lunch she brought back for us. Fish and chips. Yummy.

Life doesn't get much better than this people.

Dec 10 - The Beaches

We both slept very well, and were up and drinking a berry smoothie before 8.

In my motorcycle tour days I delt with a man named Chamberlain. He owns the largest hardware stores chain in Africa. His wife was best friends with my ex-wife's mother.
When he retired, he and his brother bought 4 houses on a very exclusive beach, tore them down, and built 2 big houses.
Herolds Bay is a small bay that has a good small beach. Very much for rich people. It is the start of the tourist season, and the beach had not a lot of people there.

 This is a pic of the houses along the beach at Herolds Bay in one direction.

And in the other direction.

I had to hug a street lamp pole to take the pics :-)
Notice the many shades of blue.

We then drove to Victoria bay. Another public beach. This one is a madhouse during the holidays. We looked around a bit, then sat in a open restaurant. We had a nice pizza. (diet pizza of course) and enjoyed all the girls in bikinis....oops I mean we enjoyed the scenery.

Victoria Bay. Up at the top of the picture is the tunnel entrance for the Outeniqua Choo Tjoe. The other side of the tunnel we saw yesterday from the whale watching point.

I

 Here is the restaurant.

 The view from inside the restaurant.

What a pleasant place it would be if all the people (except the two of us) were gone. Well, maybe the guy that makes the pizzas could also stay. :-)

Tomorrow is a visit to the Botanical Garden.

Dec 9 - Drive to Outshorn and Wilderness.

Wednesday Maddie drove us to Outshorn to visit a friend of hers.
We "cured" my diarrhea by taking lots of pills they stop diarrhea. I probably won't shit for a week now.

I remember this road between Outshorn and George from back in my motorcycle tour days. The Outeniqua Pass road is one of the best motorcycling roads in the world. Long sweeping curves, little traffic, good look ahead, wide safety lane, and good tar. We used to send our clients up and down the pass twice. They loved that.

 We had a wonderful lunch at an old Ostrich house with Maddie's friend.

On the road back downhill to George we took some pictures.

 Me with George in the back ground.

 The Outeniqua Mountains, covered by clouds.

 Maddie and George.

A couple of shamelessly romantic selfie takers.

Maddie then drove us to Wilderness. It is a pure holiday town between George and Nysna. We needed to pee, so went into a large 5 star hotel. They were having a special on coffee and cake. R35. That is cheap. They had no lift (elevator) up to the restaurant. So we sat in the reception area and they sent a waiter.
I had a good chat with the waiter. After he left a very nice, chatty hotel manager sat down and we chatted lots. She just started the job and is a bit over whelmed by the responsibility. But I believe she will do that job very well.
She said the biggest problem was the local black staff. As an example she used the phone receptionist. That lady will answer the phone perfect, like 9 times out of ten, "Good morning, Protea Hotel Wilderness, my name is Sofi, How may I help you?"
Then she answers the next call with "hello". You can hear the people asking where is this, and almost plead to talk to someone else. The the next call is again answered perfect.
The manager says that training is futile because the receptionist already knows everything perfect.

We then drove to a whale lookout point. We asked a guy there if he had seen any whales. He said nothing today, but he saw some whales and dolphins yesterday. I think the locals are trained to say that. :-)

We took some pictures. I came SOOOO close to falling. I put crutches aside, and was waiting to take a picture with a para glider in the shot, and lost my balance and fell backwards. Thankfully I fell onto (almost into) a big concrete trash can.

The town of Wilderness. Note Para glider. This is from the whale watching point.

Again from Whale watching point. The Outeniqua Choo Tjoe steam train used to run from George to Nysna untill 2009.
:-(
Here it is in it's glory days.

 Tomorrow we go to the beaches :-)

I have changed the way my blog is delivered. It is now e-mailed to certain people only. That way they can forward it if they want. So now Richard, SuZi, Don, Allen and Maddie will receive this blog post.

Day 120 - Last Blog

23:00
In George.

This house is big. +- 5000 sq/ft (460 sq/m). It is on many layers. Right now I can get to about half the house. Once I get the wheelchair adjusted, I will be able to get up the step to the kitchen also.

I was so exhausted last night I was asleep around 9, and got up for breakfast, then took a nap and got up at 1. except for about 10 toilet trips, I slept 15 out of 16 hours.

I have not experienced any of George yet this trip.

I find that I have not kept correspondence with the people that mean the most to me. I have been letting the blog do all my talking. This is just not right. My fiends and loved ones mean more to me than that.
This blog has become more like a very impersonal email. It used to be for Dan, to Dan,  and I shared it with close friends. It seems to have lost direction. I now seem more concerned about what people want to hear, rather than just expressing my thoughts. I often hear from people, that I give to much detail about things best left unsaid. I can see that. People don't want to read depressing medical stuff.

I think that things that some people want to read about are often "none of their business", and the people that actually do care about these thing should be told in a personal mail.

39.8% of my page sessions are now robots, or hackers. I had 8 people that stayed on my blog site for more than a minute during the last few days.

It no longer seems about angiosarcoma, or amputation. It's about my feelings for Maddie, my travel arrangements, and my new car. 

This blog has out lived it's usefulness.
---

Day 119 - George

08:00
Up and zooming trying to get ready for taxi.

Saturday morning 2:00 am
Maddie - George

I've just woken up in the early hours of the morning, realizing that we didn't attend to the daily blog.

Just a short one from me, to put everybody's mind to rest, then back to dreamland.

We were so worried about many things, i.e. that Dan's diarrhea won't subside in time for the flight, crutching, airports and wheelchairs and many other things that might be a problem.  None of the issues we worried about, happened.  The taxi arrived well before time. Dan chatted and joked with the taxi driver all the way to the airport, we laughed lots and everybody was in good spirit.  The SAFAIR staff was prompt to give Dan a young assistant from the booking-in point . She wheeled and assisted him professionally all the way into the plane, where he could just crutch to his seat. We both were tired and dozed off during the 2-hour flight. After landing in George, we had to wait until everybody had left the plane. Dan had to crutch to the front, got into his wheelchair and was lowered down in some kind of lift. We were both relieved that Dan had no 'accidents' during the flight and only needed a toilet after we landed.

Shirley and Carl came in two cars and were waiting for us. They were not sure how much space we would need for baggage and wheelchair.

Back at the house, Dan was exploring every room of the big house, first on crutches, then later in his new wheelchair.  We tried to figure out how he will be able to take a shower. This house where I stay is not 'Dan friendly' as yet,  but we'll figure it out more each day.
It will be a challenge for him indeed. Of course he's more comfy in his own house, but I'm positive that the change of environment will be good for his soul.

I zoomed to Checkers for food shopping, while Dan was watching the Discovery channel.  After supper, which was quite late, we both realised how tired we were. Dan was fading fast. Neither of us had even given the blog a thought, in actual fact, he didn't even know where his cell phone was and he didn't care either. He just wanted to lay down his weary head and sleep. He had 3 very bad days of little sleep, lots of phantom pain and acute diarrhea, which took its toll on his body for sure. 

Let's hope from tomorrow, (oops, I meant today) he will get better, just chill and enjoy his short break here in George.   I'll go outof my way to make it pleasant and enjoyable for him.

More news from Dan himself later. Now to get horizontal again.  Maddie checking out ......  Zzzzzzz

---
PS
I will definitely recommend SAFAIR to people with impaired abilities.   Issues  like seats that can't recline are not important to people in wheelchairs.  The assistance they give to those people is of major importance. I have less worries now when Dan has to travel back on his own. 

Day 118 - short depressing blog

I have been dragged so far down a deep hole, I don't know the way out.
I have been in this bed three days now. I hate this bed.
Maddie bought me a new wheelchair. I haven't even touched it yet.
Maddie fell in love with a strong, world wise, Texan. He has turned into a diaper wearing, bed ridden weakling.

 My brother always says "Don't go there, till you get there."
Sorry Bro, I got there today.

I filled my diaper twice today.

Maddie is a wonderful soul. One of the best ever. She does not deserve her husband dying of lung cancer. She does not deserve to go through that again with me.
She should be married to a millionaire, and living on a yacht in the Greek islands.
I asked her to please try to get me to George tomorrow.

--

20:20

I feel better. Maddie drove to the oncologist, and got lots of diarrhea stuff for me. She has been feeding me and she stopped the diarrhea.

Chemo, phantom pain, and then the diarrhea hit me hard. Yesterday and today were some of the worst days of my life. And don't forget that I have angiosarcoma cancer AND just lost a leg. 

Maddie is all packed for George, and of course, I haven't started packing yet.

My new wheelchair is super. Much higher quality than I need. I like that. 

Maddie just took a picture of me in my new wheelchair wearing just a diaper. She refuses to allow anybody to see that picture.

--

Day 117 - Day after chemo

08:00
What a screwed up night and morning.
I am paranoid about my stump now. The scar has no protection at all.
I slept poorly, but not from phantom pain, I just wasn't sleepy.

I discovered the most amazing thing. If I fantasize about moving my left toes. forward and backward, and left and right, Not much, sort of like if I had a shoe on. By visualizing it, it is almost as good as mirroring.
Because there is absolutely no feedback from muscles, or positioning sensors in my foot, the phantom foot never moves. That makes it hard to do. But by imagining the movement, I was able to mentally move my leg and foot. The instant my missing foot moves in my brain, the phantom pain goes. Very repeatable. I played around from 1:00 till about 3:30. I could repeatably stop the phantom pain. It takes lots of visualization, and concentration. When either would slip, the pain was there in a second.
Not really a practical solution, as I can not let my mind drift for even a second. Sleep is not possible while stopping the pain this way.

I got up at 07:45 to call a guy about selling the beetle. I sat on my wheelchair, and started dialing his number. Then I had to poo, and I pooed. There was about a second between no need to go, and shit everywhere. I yelled for Maddie, and zoomed to the toilet. What a mess. Very explosive, but so short lived. No warning. We then started taking all the pillow cases off the pillows on the wheel chair. Poor Maddie, what a smell. When we took the one pillow case off the buckwheat pillow, the zip had come undone, so about 1/4 of the buckwheat fell all over the floor. What a mess.
I took a shower, and will live in old underwear all day. I am paranoid.
We have a booklet from the chemo lady, saying what to do to treat diarrhea.
She says don't eat or drink the following:
Coffee, broccoli, hot sauces, chillis, beer, soy milk, beans, raw fruits, vegetables, nuts, whole wheat bread, and bran cereals.
That just listed the food contents of this house. Now I will starve to death. The doc says to eat high sodium food. Bananas, and bovril. Bovril has 5830 mg of sodium per 100g. Shriek!

We still don't have confirmation of the wheelchair for the flight to George. I need to call for that now.
--
18:35
I am so useless. I have slept 3 different times today. all for 2 hours, then I am awake for an hour, then I pass out.
We have so much to do before George, and I feel so useless.
We sorted the airport wheelchair saga, and the ladies at the airport say that I should bring my own wheelchair, and then there is no problem. So tomorrow at 1 we will go buy a wheelchair.
At 11 we need to take the beetle to a guy that acts as a broker for beetles. Then we should know what it is really worth.

20:30
From Maddie

Our dear friend/bro has passed out, so I'll just end his blog for the night.

It was not a good day for Dan, to say the least. I agree ... AS sucks and chemo sucks too.  To just think that there is still 3 more cycles of chemo treatment ahead, is enough to make the most positive person depressed, no need to say how  the patient  feels about that. I feel so sorry that he has to go through all this :-( BUT I'm positive that tomorrow will be a better day, that he'll have less fatigue and more energy, less nausea and better appetite and less negative with a more positive spirit.

Hang in there Dan!  You are in our thoughts and prayers.

---

Day 116 - Nineth Chemo, wound care lady

 08:00
 We are up early, and just had a super healthy breakfast. Fried tomato, fried egg, steamed fish and steamed broccoli.
It is a beautiful morning. It is almost like there is no angiosarcoma in the world.
 But the reality is, I am going for chemo in a few hours. So the chemo gods will take the next few days of my life.

I am hoping the wound care lady will teach wrapping today.
When I crutch a lot, my heartbeat goes up, and the stump hangs. It then fills with blood, because there is no vein action in the muscles to pump the blood out of the stump. The swelling seems to be a major cause of phantom pain.
I think maybe the swelling puts pressure on the nerves that have been cut short, and used to go to the foot and lower leg.

The politicians in South Africa are now talking about how the white man is more likely to pay for medical aid for his pet, than for his maid or gardener. They interviewed 4000 middle class families, and found that to be very true.
The most common response from the bread winner of the house hold was that pets are part of the family, and domestic workers are temporary employees.

Oh oh...Maddie wants me to "mush".
--
16:00
Just back from chemo, and wound lady, and lunch at the dance studio.
Maddie is busy sorting suit cases to take to George.

Chemo was normal. We both chatted to other people. It is interesting to hear other cancer stories from people. We then chatted to the oncologist.  A very nice Indian lady. She explained the need for a longer chemo treatment. They are pleased with the way chemo reduced the tumors in the leg, and they want to hammer the ones that may have escaped into my body.

We then went to the wound care lady. She was very happy with the stump wound. She spent a long time cleaning it up and removing LOTS of dead skin and scabs. She said that I should never remove a scab. They must all fall off on their own.

 

 

Note: I am NOT holding a pumpkin (or a football)

Another Note: It has been as severely abused as any body part can be, so it is NOT smiling. I know it looks like it is smiling, but it is NOT.

The doctor came by and also looked. He said it looks good, and to no longer bandage it, just let it open to the air. He also said to shower with it open, and wash gentle with soapy water. 

The Wound Care Lady said that when I see her next on Dec 15th, we should be able to pass me off to the prosthesis guys for coning to start. 

The Doctor said that the coning should be done by early January, and I should be on a prosthesis before I am off chemo the end of February. That would be great. :-)

Then when I finish with chemo, and am on a prosthesis, Maddie and I will have to start serious planning for a trip stateside.

On the way home, I showed Maddie a cute little cafe I found. It is almost half way to the big mall, so I used to walk past it many times, and would often stop in for coffee. It is a dance studio. We sat, ate lunch, and watched the people learn to dance. One lady student today seemed to have two left feet. 

But I guess I shouldn't say any thing, because I have NO left feet.

Once again we are up way to late.

--