Introduction
My story with NET cancer is a story of
encouragement for those living in fear of this disease taking your life
quickly. My journey with this disease now spans more than 50 years. As such I
had to look at the most pertinent parts of it, but I will try and keep it as
brief as possible. For the sake of clarity, I had to deviate from the illness
itself and give a background of other circumstances that influence me and also
have a serious impact on my medication and medical outcomes
.
But let us start with the beginning. I
started life as all other people as a fetus, but during her pregnancy she
ended up with a burst appendix. The doctors literally had to take me out,
remove her appendix or what was left of it, put me back inside her again and sew
her up. So when the time came for me to born, I was born at home like most
other people in those days with only a midwife present. I only realised 60+
years later, that her appendix could actually have been NET Cancer of the
appendix, as she always complained about hot flushes which most doctors put
down to menopause. The only problem is that it continued until her death in
2013 at age 95. Other symptoms were the spider veins on her upper right inner
leg, always complaining about being bloated, and a total collapse of her sexual
life. I know as a kid you are not supposed to know this, but boys will be boys.
Especially if you are part of four mischievous brothers.
My early life in school
I had a normal life as a small kid but had
a problem with my bladder. Every now and then I would wet my bed even at age
nine and ten. The other problem that was also caused by my bladder was that I
would take ages before starting to urinate. Sometimes at school I would be late
for class as I had to wait for the bladder to decide when it was time to open
up. I can still remember one day in my teens when the teacher would not let me
go to the toilet while we were writing exams and I ended up wetting myself.
Fortunately, by the time we had our normal midday break my trousers were fairly
dry. But it was humiliating.
At other times I would see blood in my
urine and our doctor diagnosed it as bilharzia and told me that it will happen
every now and then that my urine will be red or that I might find small traces
of blood in my urine. I then had to see him again and go through a process to
kill all the parasites and it would be fine again. As kids we used to go
swimming in all sorts of water so it was probably the easiest conclusion for
him to make.
Then as I turned 15 or 16, I had these
experiences where I would have severe sinusitis and the doctors could never
find the cause. I was just told that it was just another thing that I was
allergic to like all the other things I was allergic to and that was it.
Something else that happened was that I would have this severe pain that felt
like an appendix problem or pain in the abdomen but normally the next day or
hour it would be better or gone, or I would give it a couple more days and then
it will be all gone again. Later on in my working life I realised I had this
temper that was difficult to control but I worked on it and fortunately as I
worked mainly with clients in their offices it did not interfere at work. I
still had a bit of a short fuse wire then, but nothing is left of it today. So I
try and avoid situations that could cause conflict as I know what will happen.
I will explode. Some of the over the counter medicines at times helped, while
other would cause me to what I can only describe as putting me on a trip. As
someone who has never used drugs, I can only assume that is what they would
feel like.
I am also a very inquisitive person. When
we moved into another house as a teenager, I found that the previous owner left
a lot of chemicals in a room outside and I would try and identify what it was
and what happened when you mix some of these things. The one time I made this
yellowish substance that looked like yellow smoke only to find out that it was
chlorine gas. So, I was always looking for ways to make something easier, or
just look at how things are made.
During my teens my blood pressure would
just go mad but by the time I got to the doctor nothing was found. This
happened quite frequently but I learned how to cope with it and what the
warning signs were. Remember this was early 1960’s, so very few doctors have
ever heard of this condition, and in South Africa even today medical doctors
are trained that when they suspect NET cancer, they can contact the university
that will assist them and tell them what they have to do. Then I also knew that
I could not leave home without taking an OTC medicine for an upset stomach with
me whenever we would go out. At times I was nauseous but that was not really a
problem like the upset stomach was. I found that I got tired but tried to
remedy that by taking my bicycle and go on a forty-mile ride to increase my
stamina. At work I did not see that as a problem as I just took a couple of
minutes resting time, even if it was just a walk around the office or home, and
then I would be able to continue again.
One of the things we were taught at home
was that even though we were seen as poor people, it did not matter as you can
achieve anything if you put the time in that is required for a specific task to
do it. The only problem with that was that if you did not have exposure to
certain vocations, you did not know what was required to qualify for that
specific vocation. And the teacher we had at high school that was supposed to
give us some guidance was close to retirement so his knowledge was not really
up to date with what types of people were required.
I decided to take the easy route and that
was to become a chartered accountant. My accounting points were always above
80% or even at times averaged above 85% for the school year. Coupled to
mathematics which I enjoyed and I had the privilege of being the first student
to score full marks for an examination, it looked like the best route to
follow. It was just those subjects that I would enjoy, but the rest of them I
did what was required to pass them all through school. I remember when my
parents took me to a university to help me decide what to do with my future and
what I should consider studying that the examiner told me that my marks shows
me as a very lazy person, as I should be able to get 80% + in all my subjects.
I knew it but was not interested in studying history and Shakespeare as I could
not see any benefit in spending time trying to remember dates and names and
battles. To me it was a waste of time. I needed to either do something that
came naturally, or something where I had to think about a situation or problem,
and then come up with an answer.
In my final year at high school all the
students, those that could afford it, went to a place called Loskop Dam for a
weekend. Things at home were changing financially and I could actually afford
to join them. We had a party the Friday night and then on Saturday we were all
just relaxing. Some of us played a game of cricket while others went fishing.
The afternoon was set aside for a tour through the game park on the other side
of the dam which was really a wonderful experience for me as it was an
experience that I never had in my life before. Even growing up in South Africa,
as we did not have spare cash, the only animals of Africa that I saw was at the
local zoo. Up to that weekend, I never had the opportunity to see these animals
in their natural surroundings. While still cruising through the game park I
started sneezing and by the time we got back to camp I really thought that I
had either the flu or that I was allergic to some plants or trees we drove
past. This was not the first time that I had this type of situation as I was
used to it happening normally first thing in the morning but by 10 o clock in
the morning it would be gone. All the local doctors used to tell me was that I
was allergic to some stuff in the air but never sent me for any tests. But this
time it was different. I really felt bad and was told to stay in bed while
everybody else enjoyed another party. One of the nice things that happened was
that some of the girls would come and check on me during the evening but when I
fell asleep the visits also stopped.
The next morning, I was still in exactly
the same situation and by the time we arrived back at school my parents were
told to take me to the doctor to see what was wrong and that they will only
allow me back once I was over this. I went to the doctor the Monday morning and
was given medicines to take and was out of action for a week. But I still had
these times when I would get “hay fever” that would last for a day or two. And
then at times I was sort of lightheaded and knew I had to either sit still or
go and lie down. We have to remember that this was in the late sixties and I am
living in South Africa where even today when I see a doctor and I tell him I
have NET Cancer he takes out his notebook and asks me to tell him more about
it.
I was also nauseous at times and it was all
explained as maybe the food being too rich, or just that I must be thankful for
cleaning out my system on a regular basis.
Early adult life
After school I started studying and working
at the same time as an article clerk at a firm of auditors and public
accountants, but after eighteen months found out that there were these
fascinating machines called computers, and that there was a high demand for
programmers and trainees. I went for some aptitude tests and training at a
college in COBOL although I hardly used it as a programmer, and within a day after finishing the course, I landed my
first job as a programmer and found that this was really the job I always wanted.
I could use my knowledge of accounting and the applicable laws and regulations
and talk to all the accounting people because of my background, and within
weeks they would have a custom-built system running on their own computer. It
was so much fun that at times I would get to work at three in the morning as I
suddenly worked out how to do something my client wanted and got up and drove
to work before I would forget what the solution was. It was also extremely
interesting to find out how these machines worked, and before I knew it I would
make changes to the actual operating systems and send it to the developers in
the USA and they would incorporate it with the next release of the operating
system. I ended up as an explorer, except I was paid to do it, and I could
really explore things that most other programmers would frown upon.
I ended up as a real bits and bytes guy
enjoying programming in assembler as using low level assembler language, I
could control what this machine was actually doing. Now these were the early
seventies where most programmers were depicted as the hippies smoking dope and
not having any real people skills. Outside people could not understand that
there were also guys walking around in three-piece suits and working as systems
analysts, designers and programmers that had to dress up to see clients on a
daily basis as all these computer people were seen as some weirdos.
During the beginning years in the computer
industry I also met the wife of my dreams, got married and four years later
started with a family. The one thing that was still bothering me was the fact
that I had these hay fever stories, but I made it off as probably allergies
coupled with an injury I picked up in my final year at school when I was
training for a gymnastics display at school when I broke my nose which left me
with difficulty breathing as the wall between the nostrils were so out of place
that I found it difficult to breath at times.
The only thing they found was when I went
for an insurance check-up for new insurance much later in life that the
insurance company specified a three-month waiting period instead of the
standard one month waiting period before they would start paying for disability
insurance. No reason was supplied and I did not question it.
So to me, I had an answer for my hay fever
as it either pointed to the broken nose or to a probable allergy. Like all
things in life if it happens frequently you get used to it and is accepted as
the norm, and that was exactly my case. I knew I had trouble urinating and had
to take my time and got used to never leave home without my bottle of
Kem-o-dene, an over the counter medicine for an upset stomach.
Then in 1982 our son went to hospital as he
also had a problem wetting his bed at age seven, and the specialists decided to
look at his bladder. What they found was that the valves in the front of the
bladder were facing the wrong way around. This caused him to retain his urine
until he was completely relaxed in bed, and then the urine would escape causing
him to wet his bed. It would also cause reflux to his kidneys which was a major
concern. They fixed that and we were really pleased as I then knew what my
problem was but it was not causing me any embarrassment so I decided that my
bladder probably sorted itself out and I did not complain about waiting at
times of fifteen minutes or more before I would start urinating.
Shortly after that I went to hospital to
get my nose sorted and it was such a relief to be able to breath like a normal
person finally after probably 15 years after the event where I broke my nose.
Then in 1986 I went in for a scope of my
bladder as I had blood in my urine again. This time the doctor, a new guy as we
moved town, decided that he would refer me to a urologist for a scope to see if
there was anything wrong inside my bladder. I went to the hospital and when I
came by after the scope, I was told that they found a tumour in my bladder that
was malignant, but they removed it. All I had to do was go for a scope every
year, so no scans afterwards, and after three years of going for a scope I was
declared cancer free. What type of cancer it was I never found out as to me
cancer was cancer, as in my circle of friends and family most people that had
cancer would die or were on their last legs. My wife lost her mom to cancer
about a year earlier, so that was my frame of reference. I was just glad that
they found it and removed it. At that time, I really prayed and asked the LORD
to at least see my youngest daughter become an adult as she was only four years
old. Today she is a mother with 2 kids and going on 39. To me it was like a
death sentence as everybody I knew who had cancer was either already dead, or
dying.
But I still had the same symptoms I had as
a sixteen-year-old boy with occasional severe pain in the abdomen area and
sinusitis and what I found out later was flushing episodes and humongous
amounts of histamine that was released by another tumour that nobody identified
was there. At times where people would complain about constipation, I would
tell them that for me I had to go to the toilet either once or sometimes twice
a day. I know it was not an easy thing to get used to as everybody would
complain about the smell afterwards, but that was just me. You can only spray
that much air freshener to take away the smell, but the smell was still
horrible. Another problem was that when I did go to the toilet it always
sounded as if someone was trying out some new explosives, as it was really
load.
The one thing that bothered me was this
feeling of nervousness I had. I was always nervous and I really had a hard time
cold calling at my job which by that time had progressed to selling and being
in marketing as a product and marketing manager in the IT market. While still
working as a programmer earlier on in life it wasn’t a problem as I would
normally have time to work with my new clients and it was not that I was the
one making first contact. But in selling once I opened the door to a new
prospect, I was all right, or if I had to do a presentation, I would go through
3 glasses of water just to keep my mouth from drying out completely. Even
writing this now I have a dry mouth. And this nervousness continues. I just
thought that it was just the way I was put together. The one thing that helped
the sinusitis was actually smoking. At times as soon as I had my first
cigarette in the morning, I would actually feel better and my nose cleared up.
I stopped smoking after about nine years of smoking and found I had to take
Allergex in the morning and evening to help me.
The struggle begins
Then a strange thing happened the morning
of 31 August 1995. I woke up with a severe pain where I thought my appendix was
and during the day made an appointment at our local doctor to see him as the
pain was getting worse. When I saw him, I was told to go home and get
everything I needed as I had to go to hospital as they thought that my appendix
was at the point of actually rupturing.
I went into the operating theatre at eight
that night and eventually was back in my room four hours later. That was when
the surgeon told me that he removed my appendix but found a tumour inside which
was definitely malignant, and while trying to make space to get to the appendix
as he had trouble getting to it, he also found this huge 100mm tumour
surrounding the small intestine which was also malignant. He had to remove
about two meters of my small intestine just to ensure that they left nothing
behind. I was told that if they did not find it that night that I would
probably have had another year to live. I had to go back eight weeks later for
a full laparotomy operation where they found 20 odd lymph nodes, and one that
actually was inoperable as it encased the abdominal aorta, and all of them were
identified as carcinoid or as we call it today NET cancer. I was also told that
all the tests came back showing I had carcinoid syndrome and that was the cause
of my flushing, diarrhea, sinusitis and the sudden changes in blood pressure
as well as the spider veins that I got while still at school in my right leg.
So that was nearly 30 years from my first carcinoid syndrome symptoms appearing
to being diagnosed accidentally.
The thing that struck me was that my
sinusitis problem disappeared, and my nervousness was also better. I was booked
for a course of chemotherapy using Interferon alpha which was a horrible time.
But when we did tests after the treatment my 5HIAA came back normal, blood was
normal, and nothing showed on any CT or MRI scans. I continued with the blood
and 5HIAA test for 4 years but it was all clear.
During this time the political and economic
situation changed drastically in South Africa and I found myself on the wrong
side of the new South Africa in 2001 as I was a white male and over 50 years
old. I was retrenched in order for the company to be able to continue doing
business, as they had to reduce their older and higher paid white staff members
and work with a company that would bring them in line with the broad base black
economic empowerment which the government implemented. The main drive behind
this move was that the economy had to provide for other races to also form part
of the economy, but what actually happened was that people like our current
president formed companies that they would “sell” to other companies in
exchange for a percentage of the tender price. At times these new companies
would actually take the lead in big projects and hand out the actual work to
their friends and family to do the work, where they as main tenderers would
receive shares in major companies as a part payment, and they would take the
actual tender price and inflate it in order for them to make millions of money
by just using their status as black economic empowerment companies as a smoke
screen. Our current president was not even worth a million Rand before 1994,
but he is worth billions of Rands today using this tactic. He used to be the
president of the umbrella organization that all trade unions fell under, so he
knew when and where to push for companies to place shares with black economic
empowerment companies, and he was in the fortunate position to own the
companies that would fill that void. The only proviso some companies placed on
handing out shares, was that you could not sell these shares within five years
after the original transaction in which you were handed these shares. Now where
these transactions were supposed to filter down to that working class it never
did. It just made some crooks extremely rich as they would keep their shares.
So our current president made himself a billionaire using this method while the
people that was supposed to benefit, are still staying in their shacks. Just
remember one thing, I was raised in a country that was at that stage seen as a
first world country, the same as any country in Europe, Australia and the USA.
Our current government has the major accomplishment of changing South Africa
back to look like all other African countries and a third world country where
only the elite leaders can enrich themselves.
I include some figures that I found in my
research for this article as I know that I will be labelled a white racist. But
then maybe I have a reason for earning that title.
First the figures audited and agreed to by
all parties during the reconciliation talk between the ANC and the National
Party. (The NP represented the whites).
Deaths due to political violence during
apartheid:
Max Coleman’s authoritative book analyses all deaths due to political violence from 1948 to 1994 in South Africa and Namibia.
Max Coleman’s authoritative book analyses all deaths due to political violence from 1948 to 1994 in South Africa and Namibia.
According to the HRC statistics, 21,000
people died in political violence in South Africa during apartheid – of whom
14,000 people died during the six-year transition process from 1990 to 1994.
The book lists the number of incidents, dates, and those involved.
This includes SA Defence Force actions, for
instance the 600 deaths at Kassinga in Angola where the Defence force were
fighting against the Cuban and Russian armies who wanted to rule Angola. during
the war in 1978.
Of those deaths, the vast majority, 92%,
have been primarily due to Africans killing Africans — such as the inter-tribal
battles for territory: this book’s detailed analyses of the period June 1990 to
July 1993 indicates a total of 8580 (92%) of the 9,325 violent deaths during
the period June 1990 to July 1993 were caused by Africans killing Africans, or
as the news media often calls it, “Black on Black” violence – hostel killings,
Inkatha Freedom Party versus ANC killings, and taxi and turf war violence.
The activities of the Civil Cooperation
Bureau as outlined by the Truth and Reconciliation Commission, were also
included in these figures.
The security forces [of the RSA. Ed.]
caused 518 deaths (5.6%) throughout this period.
And again, during the transitional period, the primary causes of deaths were not security forces nor white right-wing violence against blacks [just think that the AWB was allied with the IFP (Zulu). Ed.], but mainly due to “black-on-black necklace murders, something that Winnie Mandela introduced to stop people from giving information to the police”, tribal conflict between the ANC-IFP, bombs by the ANC and PAC’s military wings in shopping centres, landmines on farm roads, etc.
And again, during the transitional period, the primary causes of deaths were not security forces nor white right-wing violence against blacks [just think that the AWB was allied with the IFP (Zulu). Ed.], but mainly due to “black-on-black necklace murders, something that Winnie Mandela introduced to stop people from giving information to the police”, tribal conflict between the ANC-IFP, bombs by the ANC and PAC’s military wings in shopping centres, landmines on farm roads, etc.
Violent deaths from 1994 to 2000:
And the SA Police reports for the above period: which can be accessed at their website’s statistics at http://www.saps.org.za — that a total of 174,220 people died violent deaths, from crime-related violence [or related to hate-crime against whites, and especially against the Boers. Ed.], between 1994 and the year 2000.
And the SA Police reports for the above period: which can be accessed at their website’s statistics at http://www.saps.org.za — that a total of 174,220 people died violent deaths, from crime-related violence [or related to hate-crime against whites, and especially against the Boers. Ed.], between 1994 and the year 2000.
Now I can continue with my own experience
again, as I trust that you now have a better understanding of what we face on a
daily basis. I used my retirement savings to start my own company but had to
close the doors after two years as I was excluded from doing business with any
government or large enterprise as I did not have any black workers, even though
I was the only employee. This also meant that I had to change my medical insurance
and then found that they excluded all cancer treatments and back problems. The
back problem was a result of a car accident where they had to fuse the lower
five vertebrae as a result of the accident. It was already a problem when I
applied and during those days, they could exclude prior conditions or put long
waiting periods for previous conditions. In the end I stopped with my medical
insurance as those were the areas I needed insurance for, and not being able to
work, also meant no income to pay for it.
Then in 2008 I started with sinusitis
again, my nerves were showing signs of playing up again, but I thought that by
ignoring it I could live a normal life as I did have a “normal” life before
being diagnosed. Another thing that happened was that my sex drive completely
disappeared. I was not interested in going through the same procedures again
and definitely did not have the money to pay for all the tests. I already knew
at that point that the one tumour stopped all testosterone from going to my lower
body as I only have about 6 hairs on both legs combined.
Something else that happened after my first
operation in 1995 was that I started studying theology at a Pentecostal
university on a part time basis. This was a direct result of my time in hospital
as I had this weird experience where I saw people clothed in white all heading
to a hill while I was in a treehouse or some other structure. I asked our
reverend if he could explain it to me only to find that even though he had a
PhD I probably knew more about the Bible than what he did. At the Pentecostal church everybody prayed
for me and I was told by all good Pentecostal’s that I was cured. I knew
differently though, but as I had no medical insurance I could not go for tests
as I could not afford it. I was ordained as a pastor but knew I could not
practice as a pastor as there was no way that I could handle the load on my
psychological side, and the extremely short fuse.
During this time, I started writing my
conclusions of Biblical doctrines as I used my computer tactics to investigate
subjects and check all commentaries and then either confirm, modify or reject
the different teachings by the different denominations. Some were quite easy,
but others took years to investigate. Some ended up as small articles while
others ended up as books. This was all done while either working at jobs just
to get some money to survive, as I was excluded from practising what I could do
due to labour policies. Today there are 116 different laws in our labour laws
against employing white males.
I then started working as a financial
adviser while studying part time as that was one area I was still able to find
employment in and was very successful and started building up a client base in
order for me to build up a residual income for my retirement, and hopefully
build up some funds to be able to go for tests again. The situation I found
myself in was that my income was too high to qualify for state subsidised
medical, but too low and irregular for paying it myself.
Eventually in 2013 I woke up the one
morning with something I just could not ignore any more. By the time I saw the
doctor I was told that I was lucky to be alive as I had a carcinoid crisis.
Plenty tests later it was confirmed. The small piece of the one lymph node they
left in 1995 surrounding the superior mesentery artery had grown to a tumour of
78mm by 40mm by 30mm. My beer belly was not a beer belly (I do not drink beer
at all) but was a result of the tumour with the bottom of the tumour just above
my belly button, and scar tissue from the previous operation. Most doctors and
oncologists today ask me for information as I normally know a lot more about
NET cancer than what they do, thanks to all the information available from
email groups to Facebook groups. And coming from the IT world I am used to
doing my own research as I always worked in what was referred to as the “new
toys” department. But this studying is something that only happened during the past six
years as I lived in a world previously where like so many people live that if
you ignore a problem it would go away. And then there was the problem that if I
found out that I still had NET cancer where do I go to from there, as
financially I cannot afford to go that route. So I ended up ignoring the
situation.
I was told that if I wanted to survive, I
had to cut back on my work especially since it was the main reason for the
stress I was under as I worked on a commission only basis as a financial
advisor. I was passed the use by date in the “new” South Africa and I was
excluded from working at most companies and all government entities, as I was a
white male, on the wrong side of sixty, and even though I did not support the
previous government and their views, I am still branded today as a racist and
still excluded from the job market.
We moved to a tiny town to settle down and
just to take life day by day and see the oncologist when needed. Fortunately,
my tumour and all its allies and mets are well defined, so they grow slowly.
Low grade well differentiated. Even though the biggest one is around 80+ mm by
35 mm by 30 mm. As I did not have any
private medical insurance or medical aid as it is known locally, the only thing
that I qualify for is reactionary support under the state-owned hospitals. I
used to receive medication from the state operated hospitals on a reactive
basis only, but that stopped more than two years ago, even though it’s only
painkillers. (Tramadol). All schedule 5 pain killers I have to pay for myself,
but at least I can live without serious pain. But I have near constant flushing
in the upper legs, all the way up to the back of my head and neck. I also had
another laparotomy operation when my small intestine was completely blocked
five years ago. They used a small 90cm portion of the small intestine to bypass
the major part of the small intestine, and they removed a sizeable portion of
my liver to alleviate the effects of the tumours in the liver. For three years
I could smell again and had a fairly normal life again, or what I would
consider normal. This comprises of flushing to an extent that people think that
you are a heaver drinker as my nose is a purple brownish colour; I have
metastasis to the scull, the back, neck, some ribs, and my pelvis, skin, and
collar bones. There are also two metastases to my right lower lobe of the lung
which collapses on a regular basis. I also suffer from severe rheumatoid
arthritis, so it is difficult to know which is which at times. But fortunately,
I can still get Tramadol for pain, Imodium for diarrhea, and then stuff to
help me in my fight against depression, which to me is the real enemy.
The one thing that I have learned is that your cancer does not define or limit you to who and what you are. It does not control your life. I know it is difficult to fight against this illness when you have days when you visit the bathroom 80+ times, or you cannot do anything without overheating, or you are just too tired to do anything, but that is not who or what you are. You have to take charge of every incident in your life and either learn from it, or try and overcome it. And remember the biggest truth in life, and that it is okay not to be okay. When you feel that you just cannot go on, take a rest or medication to make you feel better, and move on. Remember life is a journey, not a destination. And NET cancer is not your destination although it will be part of your journey for the rest of your life. If you find out that you are starting to slow down and you cannot do certain things anymore, accept that as the new normal in your life and continue living your life. You may be like me and have to walk around with a walking stick or get into a wheelchair when you go to town, it does not make you less of a human being. It makes you someone who is facing challenges in life, but you will fight this fight everyday. Just never give up. I know it is extremely difficult, but it is your life, and you cannot delegate that to a medical team. You must have the will to fight in order to face every new challenge that this NET cancer can throw at you. Your medical team can help you, but you must be in the driving seat.
The one thing that I have learned is that your cancer does not define or limit you to who and what you are. It does not control your life. I know it is difficult to fight against this illness when you have days when you visit the bathroom 80+ times, or you cannot do anything without overheating, or you are just too tired to do anything, but that is not who or what you are. You have to take charge of every incident in your life and either learn from it, or try and overcome it. And remember the biggest truth in life, and that it is okay not to be okay. When you feel that you just cannot go on, take a rest or medication to make you feel better, and move on. Remember life is a journey, not a destination. And NET cancer is not your destination although it will be part of your journey for the rest of your life. If you find out that you are starting to slow down and you cannot do certain things anymore, accept that as the new normal in your life and continue living your life. You may be like me and have to walk around with a walking stick or get into a wheelchair when you go to town, it does not make you less of a human being. It makes you someone who is facing challenges in life, but you will fight this fight everyday. Just never give up. I know it is extremely difficult, but it is your life, and you cannot delegate that to a medical team. You must have the will to fight in order to face every new challenge that this NET cancer can throw at you. Your medical team can help you, but you must be in the driving seat.
But knowing that I have lived over fifty,
or probably even more years after the first symptoms of carcinoid syndrome
started showing at age 16 already, I consider myself lucky to be able to still
be alive despite the fact that I only get pain and sleeping medication as well
as medication to keep me from having a nervous breakdown and to help me not to
blow my fuse ten times a day, especially if you see what the ANC government and
all its allies are doing on a daily basis. But then 80% or more of their
support is dependent on grants, which is paid for through taxes by 8% of the
population, leaving the black voters having to vote for them as they are told
that they will lose their grants if the ANC loses an election. And most of
these people are illiterate with an IQ of 70 or lower.
The emotional side I believe is the one
area where I still think a lot of research is required as I cannot cope without
taking something to keep my emotions under control. And this is my personal fight. Fortunately having spent a
lot of time studying the Bible and writing about it, I have an anchor that I
can hold on to during those days or weeks or even months when your whole world
seems to fall apart. Today we live as hermits as my wife had a bilateral
mastectomy two years ago, and we are caregivers for each other. Fortunately,
many questions I had got answered either by Facebook groups or by watching NET
specialist’s presentations on the internet. These presentations were made by
Dr. Richard Warner, Dr. Eric Liu and others like Dr. Eugene Woltering, and many other NET specialists.
I also started blogging about this disease
firstly for our family and friends, and statistics show that it is being read
by many people that I do not even know. My task is to
change this blog into a book and at the same time to translate it from
Afrikaans, my native language, to English, so that it can be read by more
people. In it I document this past five/six years sometimes on a daily basis and
sometimes on a monthly basis, where more statistics and information are
available. I give information about having diarrhea 80 times in one day, with
an average of around 10 times per day. Sometimes just passing wind and
sometimes not. Sometimes being down and out, and then sometimes feeling quite
good.
My blogging days
So, for the past five or more years, apart from fighting everyday against this disease, I have spent my
time writing articles and books about Christianity, theology and the Bible to
assist in keeping my head somewhere else and not to think about my own medical
condition and our own physical security. I am also the guy who designs the
Zebra calendar which I make available for free worldwide to all the other
people fighting this disease and any person that wants a calendar.
This is the background to my health
situation for people who were not aware of my situation, or those who thought
that I was only seeking sympathy during my first spell in 1995.
My current situation.
The political situation in South Africa is
not conducive to living a relaxed life any longer. Our children are either in
the process of thinking of leaving or have left the country. My oldest daughter
lost her mother in law after they were attacked and her mom in law shot and
killed in what police recorded as a robbery gone wrong, even though only one
mobile phone was stolen. Her father in law survived the attack. He was
repeatedly beaten with a piece of wood with a six-inch nail through it over the
head, shot at, but survived. This was the press release from the local paper: Pretoria
– Sept 28, 2009 - 55-year-old Isabel Schonken was shot dead from behind over
the weekend, as she was apparently trying to escape to a guest bathroom to
hide from a group of armed attackers at the Klipkop smallholdings east of
Pretoria.
Three more farm-attack deaths this week:
On Saturday, Mrs Schonken's businessman-husband
Lars, 56, was shot in the torso during the attack near Klipkop at 02:00. Lars's
skull and wrist were fractured when the robbers assaulted him and hit him with
a pistol. He is currently recovering in the Little Company of Mary hospital in
Groenkloof, Pretoria, writes Keppeler.
Cut through electric fence
Isabel's sister Héléne Rumsey, 52, who lives a stone's throw from the Schonken’s, said the robbers had cut through an electric fence which stretches all around the smallholding. They were able to get into the house through an open sliding door.
Isabel's sister Héléne Rumsey, 52, who lives a stone's throw from the Schonken’s, said the robbers had cut through an electric fence which stretches all around the smallholding. They were able to get into the house through an open sliding door.
"They attacked Lars in the
bedroom," Rumsey related. "It seems as if my sister had fallen asleep
in front of the television in the living room and woke up when they shot Lars.
Shortly thereafter she was shot through the heart. The robbers tried to shoot
Lars in the heart as well, but luckily it was only a flesh wound," she
added.
Lars lost consciousness after being shot.
When he came to, shortly thereafter, he fetched his pistol from the safe and
shot one of the robbers. According to Rumsey, the only things which were
‘robbed’ were her sister's handbag and cell phone and her brother-in-law's
laptop. Lars phoned his daughter, Sonja Smit, and her husband, who also live on
the smallholding.
Covered in blood
Smit's husband, who doesn't want his first
name mentioned, found his mother-in-law in the bathroom and his father-in-law
in the living room, covered in blood. "She was already dead," he
said. He took his father-in-law to the hospital. Rumsey said the couple's
youngest daughter, 17-year-old Alma, wasn't at home during the attack.
Police spokeswoman Monique Vermeulen said
police followed a trail of blood – left by the shot attacker --
to a gravel road near the smallholding, where the suspects possibly climbed
into a vehicle and fled. Be on the lookout for a man
with a bullet-wound… The police have asked doctors
and medical personnel to be on the look-out for a man with a bullet wound.
Since the South African trauma units treat about 127,000 bullet
wounds a year, this might be a large undertaking…
Rumsey said her smallholding had also had
an attempted break-in two weeks ago, but the attackers fled when they trigged
the alarm. Today all four of their children have left South Africa and settled in Australia.
But that is the case with so many farmers and people living on larger properties around the bigger cities in South Africa today, both white and black. Our president even denies the
killing of farmers at the UN. So unfortunately it is not a safe place to live
and raise a family anymore. Just listening to all these young political leaders
singing one Boer (Afrikaans speaking white male), one bullet, and living in
constant fear does not make life easier. Especially when you live in the small towns away from all the bigger cities, like where we live. As soon as the ruling ANC party see that they may loose a voting district, they build hundreds of RDP houses. (In the short-term, the aim is to build one million new low-cost houses in five years. Houses will be funded by government and by business through a national housing bank and a national home loan guarantee fund.) That has changed our town in that where before this initiative our town consisted of probably around 500 white households and 1000 black/coloured households, we now comprise of maybe 100 white households and about 20,000 black/colouered households, which are all ANC supporters as they get their grants from the "ANC' and not the government. At least that is what they are told and believe. And when you have to rely on state
funded services where you are constantly being humiliated also takes its
emotional toll on a person. I know that there are probably fifty murders per
day as a result of black on black violence, but that is their norm and has been their way of life for hundreds of years, so when we
complain about farmers being murdered the numbers does not compare to this.
But, the difference is that the farmer probably employs 10 to 100 people and
their dependants, so the supply of food is at risk. Coupled with land grabs
which will be made legal during this year as expropriation without
compensation, we live in a constant fear of when these murderers will break
down our doors to kill us.
I actually feel sorry for including
politics also, but that is the reality of the situation in the new South
Africa. The legacy of what happens when terrorists take over the running of a
country without knowing how to do it as they were bush fighters, socialists trained in Cuba and Russia, and then of course communists. And the few Jewish communists who helped form the ANC and were the brains behind the ANC,
cannot take over as they will then blow their cover. And all this has a huge
impact on my emotional life and that is why I included it.
I trust that it will encourage you that
there really is life after and with NET cancer. This is my reality today.
You can visit my site at http://www.shama.org.za/ to see what I
write about, and maybe you might just find that one subject that you needed an
answer for. All my writings are available online for free and all I ask for is
that if it blessed you, you can bless us by donating to our ministry.
We
are finding it difficult to rely on other people to get to shops, doctors and the
pharmacy for our monthly medications as we do not have any transport except
when asking people to take us to where we need to be. All these places are more
than 100km. from home. I have asked for donations for the past ten years but so
far have only received two donations, even though my books are downloaded at
about 1,200 per month. But then I ask questions that people find difficult to
answer, and with most of my writings I end up causing cognitive dissonance to
the reader, but I just cannot expect people to just believe any and every
pastor who wants to make a quick buck. So if you want to you can leave a
donation or do as the hundreds of thousands of others who just walk straight
past. Thanks Louwrens
If you feel that
you would like to donate to our cause of getting our lives back, you can donate
at our payment processor at https://www.payfast.co.za/donate/go/shamaministries