Thursday, October 29, 2015

Health-care is designed around the illness instead of around the patient

This is when I still had boobies ... how I miss them nipples !
While paging through my FB page, I came across an inbox message that I had sent to John Costello some time back.   This is what I wrote:
“I have learned so much with this illness ... how when you don't get better, you start to feel embarrassed, ashamed, humiliated ... because you are not getting well and you are not dying fast enough either”.  After reading that, I spent a lot of time contemplating our health care system and how it fails the chronically ill, the terminally ill, and those with life-threatening diseases that they have to live with for life.  When you find yourself at odds with the social norm, the road becomes extremely lonely, except for the few who travel the same path as you.  And worse still is having a rare disease that no one understands, no one can see it and therefore, the patient gets left behind as society moves on with life.   Most physicians have never heard of the disease and some are arrogant enough to tell the patient that google patients get on their nerves.  Patients with rare diseases HAVE to become detectives so that they can live.  Humble and compassionate physicians are hard to find.
The word ‘patient’ means one who suffers.  Healthcare has been designed around the disease and not around the patient.  The treatment is never about us, the person with emotions, a mind and a world-view.  And those of us with chronic and life-threatening diseases who experience so much nausea and pain cannot be helped by a hospital.  A hospital is for patients with acute illnesses or injuries.
The old view of a Hospice being the last place a person goes before they die also needs to be re-examined.   Hospices should be for palliative care – and that care must be designed for the patients comfort.  It must support what is best for us.  The dying process must be made wonderful, rather than just less painful.   How we die is all important to me.  Our life has to have a dignified end to it.
There are two elements to suffering.  There is the suffering that connects the healer to the patient.  This I would call the necessary suffering that creates the place for compassion to enter into the space between the healer and the patient.  It is the suffering that comes with having to grieve for all that you are losing, every day…a little more loss, until there is only one or two family or friends who still stay by your side.   Without understanding, there can be no compassion.  Somehow the care worker has to find that compassion between him/her self and the patient.   That compassion makes suffering bearable.
 I call these people who stay by your side to the end you soul mate.  I have a ‘souler’, and I am most grateful to have him.  

Then there is the suffering of pain and nausea, the loss of physical abilities, the inability to hear, see or understand properly what is going on around one.  This kind of suffering is an abomination to the whole medical profession.   This is where we have to start re-designing how we die.   There is absolutely no excuse for the medical profession to with-hold drugs from a patient who cannot be cured and whose life is no longer worth living.   To be told that you may not have stronger pain relieving drugs because you may become addicted to it is an insult to our intelligence.   We should go into our last years, months or weeks in a state of comfort and wonderment – not because we are dying, but in spite of it.  This would be good care for the chronically ill, those with life-threatening diseases and those who cannot be cured at all.  Give us back our dignity. Don’t make us cry in front of you, begging for help.  Don’t make us tell you that we no longer want to live like this.  Don’t force us to google and speak to psychiatrists to find out the perfect drug to take that no one would be able to bring you back from; no stomach pumps and no urgent attention by paramedics and hospitals will help.  But, society and the medical model of health care have made me do just that.   I have my prescription.  I may never use it, but it gives me the illusion that I still have some control over my life.  I can still choose to live every day, knowing that if it gets too bad, I have a way out. 

Wednesday, October 28, 2015

I will not apologise for being "white". Heil Malema !!!

Heil Malema 
We are a bunch of sheep.  We have not fought back with determination, sacrifice or hardship.  Every time you keep quiet, every time you allow yourself to be treated as less than; to be treated with disrespect, you are allowing the disrespect.   We whites are now going to have to work harder and smarter and gather our resources so that we can start claiming and owning what is rightfully ours.  If we were born here, then this is also our land.  Stop walking around with your head hanging down, asking forgiveness for your colour.  We are, with our pale skins, not aliens or foreigners to this soil.   We claim the right to be here based on the fact that we were born here.   How can we allow people like Malema to publically “warn whites” at a gathering of 50 000 uneducated fools and let him get away with it?   He is a dangerous little man because he uses the most stupid people to do his bidding, destructively and violently.  How can we not oppose the race-based laws that are pushed through parliament like the AA and BEEE?  Are we so humiliated that we now wear the cloak of fear?  Perhaps Malema’s fear of whites is what makes him spew out white hate-speech left right and centre.
The  ANC/SACP/EFF is destroying our dignity; and the DA are ineffectual at combating the undeserved hatred for all whites, irrespective of whether they voted for or upheld the policies of the National Party.  We have to claim our dignity back and become part of the human race in South Africa.  And that also means that we have to take responsibility too for the mess our country is in.  If there is dirt on the street, why do we not take a broom and go and clean it up?  There are many ways of killing a cat and using a bullet is not the only way.  We must do this thoughtfully and intentionally by each and every one of us starting to behave as native to this country. 
From my limited view (and only my opinion), the majority of our dark skinned brothers do not have a problem with white or mixed race people in our country.  It is the uneducated masses that will follow Malema like the Nazi’s followed Hitler.   They just don’t have the mental facility or the know how to work out a view of life for themselves, without being told by some crazy fool who reminds me of the talented deceiver, Rasputin. 
Of course we can’t change this fuck-up overnight, but there are little things that every white person in this country can do.  We can show our humanness by behaving towards others with respect.   Respect earns respect. 
If you do not speak the indigenous language for the area you are living in, and then just start by learning how to greet others in their language.  Use that greeting whenever you walk past someone with a darker skin.  Put a smile on your face.   Like a stone thrown into a pond, that greeting and smile will spread outwards in ever larger circles.  We, each one of us, can start making ourselves count in our own land.   Our brothers all know how to speak either English or Afrikaans.  How many of us have ever taken the trouble to learn one of their languages?   You never know but that smile and that greeting can change the mind of a would-be thief or hijacker from targeting you.  I have experience of that – it is true.

I will hold my head up high.  I will not be ashamed of the colour of my skin. I will not walk with my eyes downcast, being grateful for being allowed to stay in this country. I will NOT apologise for being white.   I will NOT apologise for apartheid.  I did not plan it, uphold it or put it into practice.  I will not be a lamb to the slaughter. I will fight on every front for the dignity that every one of us is entitled to – it is in our Constitution that we are entitled to be treated with dignity.  But we must earn it to by standing up and taking responsibility for ourselves, those around us and for our neighbourhoods.  This is how we will weaken the Malema sewage that is being thrown at the unwise and the foolish.  One person at a time. 

Tuesday, October 27, 2015

Whites are rich and they own all the land.

Over the last 20 years, white people have accepted that this is a country that belongs to the black man and we have not fought any battle, overtly or otherwise, over our right to live in this land.  We have accepted with gratitude that we have been allowed to stay and, and the few that have been allowed to contribute to the governing of our land, have done so without much courage or determination.   We are partly to blame for the on-going militant attitudes of those who hate white people because we do nothing about it.  We do not stand up and say “Enough”.   We have done nothing of importance in 20 years, not even to fight with determination, sacrifice or hardship to stop laws that are being passed that are based on race.  Many white people apologise for apartheid, even though they had nothing to do with orchestrating or maintaining it.   They walk around with their heads bowed in shame and they continue to take the racist slurs and comments meted out to them.  Dehumanising crimes and stereotyping such as “whites are rich” and “whites own all the land”, influenced and inflamed by laws discriminating against whites, for example; AA and BEEE continue unabated without any resistance from us.  Like lambs to the slaughter we go. 
I have been duped.  I have believed in a compassionate, reconciled nation built on our shared humanity and respect for one another.   And I have fought every white man who bemoaned his fate after 1994.   Now I find I am fighting the born-free people who are ignorant of what happened in the past.  They think that the blacks brought about the transformation from apartheid to democracy by military victory, and they have defeated the whites.  They think the whites are lying on the floor begging for mercy. (Nelson Mandela).  How wrong they are!!  They never defeated us.  Through intimidation and torture, they coerced their own people to disrupt the government to make it ungovernable.   And while that was going on, FW de Klerk was holding talks with Nelson Mandela and coaching him to take over as President.  Who is so stupid as to think that someone can come out of prison after 27 years and walk out a Statesman and President?  It takes years of training and re-education to get back into society after the dehumanising and institutionalizing that takes place when a prisoner is held for a long time. 
It is all about selective oral history:  The history that is told to the born-free people that suits the ANC mandate and their profile.   It would not suit the ANC to remind people that it was white people who went to vote so all could vote.  The result was an overwhelming YES from white people and from that point on, the negotiations regarding the take-over of the previous government by the ANC started.   Now I am again confused.  I see more and more communist thinking and dealings going on and I wonder if the ANC was not just a front for the SACP? 

Monday, October 26, 2015

Grieving For Who I Once Was

My Medical Team at University College Hospital London
One of the most un-spoken about and little understood emotion that a chronically ill person undergoes, is grief.    We grieve for the person we once were, the things we can no longer do, the jobs that gave us titles, the roles we played in our family, the friendships we had, our ability to do things for ourselves, and the loss of a future that used to contain hope and something to look forward to.  It can take months and years to come to terms with who we are becoming as we lose one thing after another.   The last things we lose are our family and our friends.  We are left behind while they continue on with their lives.   One of the cruellest things I was ever told was,   “We have a life to live.  We can’t put it on hold for you”.  
It has taken me years to understand that others are reminded of their own mortality when they look at me and it frightens them.  And they leave you behind because you are no longer playing the game of life. 
People have pre-conceived ideas about illness.  You either get sick and then you get better, or you get sick and you die.  If you do not fall into one of these categories, you become misunderstood and at worst criticised for malingering.   Acute illness is understood.  Chronic illness is not.   And while all around you people are misunderstanding what is going on, you continue to lose more and more, and you grieve more and more.  Kubler Ross’s widely accepted stages of grief are denial, anger, bargaining, depression and acceptance.  I have been through all those stages, not necessarily in that order, but I have experienced them all.  When I got to the acceptance stage is when I started re-making who I am becoming now.  There can be meaning in life, no matter how much you lose.  We need to find what makes us really happy, or find why we were born.  It is one and the same thing.  When you know what makes you happy, you can then work around what you are able to do and when.   
It takes months and years to get to the point when you stop grieving for what was and realize that this is the moment, that this is the only moment that counts, and you being to fill this moment with what you love to do.  You can now re-design yourself and your life.   You are going to have to do this all on your own.  The folk around you won’t be able to help you.  No psychiatrist or psychologist will be able to assist.  Only another who is suffering from the same debilitating, chronic and often life-threatening illness will know what it feels like to lose everything you once held dear, and the hard work it takes to give your life meaning again.   
And even when you think you have made it through the grieving process, something will happen to remind you of who you were and suddenly you are overcome, once again, by waves of grief.  It is OK.  It is always OK not to be OK.  Just be yourself – no more can be asked of us. 

Political Confusion and Horse/BS

Horse Memorial - Port Elizabeth 
When Leningrad was surrounded by the Germans, the first thing they did in 1941 is to remove the statues and art to put them into safe keeping so that the Germans would not destroy them.  Now, please tell me why the Comrades and Commissars, who are styling their behaviour on communism, went around destroying our monuments? 

The National Party used their propaganda machine to turn an entire country into an apathetic bunch of sheep, who swallowed everything they were told.  The SA Communist Party/ANC (I can’t seem to be able to tell the difference anymore) uses their propaganda machine to turn an entire country into a bunch of violent idiots who are swallowing everything they are told.   So we had calm and stupid and now we have violent and stupid! 

Sunday, October 25, 2015

That Fair Lady

Book available from or on Kindle 
That Fair Lady
Written by Sudhir Saxena
Translated from Hindi by Om Bharati

That one fair lady in the Cape in the black night
Keeps awake
Keeps awake all the night
So that her children may sleep in tranquillity
No demons to infiltrate their light blue dreams

In the world of children, steps in the fair lady
That her entry in the world of children
Is prohibition of invasion and interference
Of ill-intentions and wickedness.

Day and night, the white woman
Is showered with accusation
That in the lap of white woman
Not one, not two, not ten
Seventy offspring.
On the wall of the hermitage of the white woman
Spit with scorn, a thousand orangutans
You the bitch, we will shoot you
Cries the crowd of rapists.
Sometimes with the hem of her gown
Sometimes with her palms
Sometimes with her eyelids
The white lady covers up the children.

White lady spans through South Africa
Wrapped up in the invisible cord of the band of children
On the left thigh of the fair lady is a black
On the right – a white
And a swarthy dusky child wipes his nose
With the sleeves of her wheat-coloured blouse.

White lady rushes to London
To get back to the Cape with pockets of pounds
For feeding the children
Returns back almost panting
Lest she is late in reaching the Cape.

Now and then in her arms
When unlucky, abused children hiccup
She herself dies yet again
Time and time, in her own arms.

That white woman yearns for bathing the black night
With the day light
To make it as bright - As bright as her love for Mandela’s children. 

Don't thank me; thank the Pope I'm here.

My late mother-in-law had a saying that she used continuously when people thanked her for anything.  She would say, “Don’t thank me.  Thank the pope I am here”. 
 My late father-in-law was an Anglican Vicar.   They had a house-helper by the name of Rosie.
My husband (at the time) and I were invited to dinner because the Bishop was coming to dinner and it was going to be a very auspicious and dignified meal.   Those days, I was a very quiet and shy person so no one was worried that I would say the wrong thing.
Almost at the end of the meal, my father-in-law asked Rosie to please bring the jam as he always ended his meal with a half a slice of bread and jam.
Rosie duly went to the kitchen to bring back the jam.
“Thank you Rosie”, he said.
“Don’t thank me.  Thank my poepol I’m here”, she said.
Needless to say, my father and mother-in-law were mortified, my husband just opened his eyes in shock, and the Bishop pretended he had not heard.

I, of course, could not stop laughing.  I had to excuse myself as the tears ran down my cheeks, holding onto my crotch to stop myself from pissing in my pants with laughter, while I left the dining room. 

Wednesday, October 14, 2015

This book has little for your comfort and much cause for the Beloved Country to cry.

In the 1993 Nobel Peace Prize Ceremony in Norway, Nelson Mandela said: “Children are the most vulnerable citizens in any society and the greatest of our treasures.” 
In the 1996 Summary of the first year of the Nelson Mandela Children’s Fund, Nelson Mandela stated: 
“The children must, at last, play in the open veld, no longer tortured by the pangs of hunger or ravaged by disease or threatened with the scourge of ignorance, molestation and abuse, and no longer required to engage in deeds whose gravity exceeds their tender years.  
The reward of the ending of apartheid will and must be measured by the happiness and welfare of the children.
The children who sleep in the streets, reduced to begging to make a living, are testimony to an unfinished business.
There can be no keener revelation of a society’s soul than the way in which it treats its children.”   
 This non-fiction book shows that if the ending of apartheid is to be measured by the happiness and welfare of the children, apartheid was a far more lenient master than the democracy we now have.    Mandela’s children have not only been forgotten, their rights have been systematically violated by the very government that wrote the Constitution to protect the children.   
I first had Saving Mandela's Children published in the UK. The cost of the book is astronomical and most South Africans cannot afford it. From Amazon, without postage and packaging it is R534.00. 
But if you get it from Megabooks it will cost you R230.00. Hold down control on the link and click and it will take or copy and past into your browser. You will be taken to the bookshelf where the book is. The book should be delivered to you in 2 - 3 days.

Tuesday, October 13, 2015

I don't have the time to die right now ....

When I still had boobs. 
I know I have bitten off more than I can chew ... but what the fuck. I will die with my boots on. However, I need your help and every one of you can help me. Heaven's Missing Angels is in need of wool (that stuff you knit with). Any kind of wool, whole balls, small balls, pieces as long as a metre or pieces you can wrap around your finger. This wool will be used to knit beanies, scarves and jerseys for children in need. And the knitters - they will be those little old ladies who sit day after day with no visitors in old age homes and who have nothing to do or to live for. So ... this project will help the oldies feel needed and at the same time the children will be warm next winter. I have been given a suitcase of needles ... now we need the wool. Do you have any or could you please ask others if they have scraps of wool for us. I live in Central so it is easy for you to drop it off here - the only problem is that I will drop my keys down using a fishing rod and you will have to let yourself in and come up the stairs. I can't walk the stairs anymore. (Come on my FB friends - be courageous and share this post.
The other thing I am doing is working on a new mission : Justice for Heinrich van Rooyen. I believe he is innocent and that he was set up. This cause will also take some balls because there are those who would do harm to make sure the truth does not come out. But fuck that too! Ek skrik vir niks.
Then ... I have a court case on the go regarding a mauling by a dog. That too requires a lot of work. 
And in-between I am trying to write and publish my books.  So if you want to help me, then buy Shattered and buy Freedom for your Soul.  The other books will be published as I get them done.   They are all non-fiction.   The pen is mightier than the sword.
Every second Tuesday I spend in hospital for IVIG. And after that I am (wo)man down for a day or two so if you don’t see me on FB, it does not mean that I have forsaken any cause or anyone.
I also belong to and am admin on a number of support groups for people with rare diseases – because I am one of them.   There is always someone on a support group that needs some encouragement. 
On the 31st October Algoa FM is having their 5 km walk for Cancer.  I will be walking and alternating with someone pushing me in a wheelchair as I get too tired.  I will be walking for everyone with rare cancers and am raising funds for Rare Diseases South Africa.   I will be walking/riding with a mask on because I have to live in a sterile environment 24/7.

Holy mother of God … I really don’t have the time to die right now.  This is not even my whole list of what I do from my bed.  

Monday, October 12, 2015

A Family Shattered

A snippit from Shattered! 
Something traumatic happened to me.  It was something far worse than being given a diagnosis of cancer.  It came as a terrible storm, a violent explosion of suppressed jealousy, hatred and anger.   A Specialist Physician with a god-complex looked at something he did not understand, fought with a doctor who had to defend herself, irrespective of the truth or consequences of her lies, gave false information to my family that has had dire significance for me, has ruined my family, and made me ashamed, humiliated and embarrassed to be alive.  It swept away all that was civilised about a family.

If it were not for my mother, Professor Linch of the University College Hospital in London, Professor M du Toit of the Bone Marrow Unit, Cape Town, Dr F Meyer and Dr Frieda Pienaar and her incredible team of specialists in Bloemfontein, and Dr Stern, I would not be here to tell you this story.  If you want to live and you have a serious life-threatening illness, it is important to find a team of medical professionals that want to save your life as badly as you want to live.

From my own experience, I know that it takes a lot more courage to live than to die.  My fervent prayer is that I will continue to have the courage to choose life over death.  My belief in a Higher Power and the aforementioned people, have been the anchor of my soul. 

This book is available from Kindle or can be purchased in hardcopy from this link  Copy and paste the URL into your browser. 

Saturday, October 10, 2015

Check out this Sway! "Shattered"

Check out this Sway! "Shattered"

Friday, October 9, 2015

Shattered ... some stories are too true to tell; this is one of them.

The incredible strength and resilience of the human soul is told in this true story of how a rare disease, a dysfunctional family and an uninformed medical doctor collided to create devastating chaos that would leave a family ruined forever.

A snippet: 

When you give someone a book … you are not giving them ink, paper and glue.  You are giving them the possibility of a whole new life.
We have all been the betrayer and the betrayed.  If we cannot acknowledge this, we will find ourselves unforgiving and cruel, unable to grieve for the times that we have betrayed ourselves.
Sometimes to choose life, we must break agreements with ourselves and with others.
The separation of spirit and matter leaves us with a spirituality that lacks the fire of the physical expressions of our hearts and souls.  To devalue the physical perpetuates the split between matter and spirit.
To insist that my truth or your truth have no meeting place, that we do not need to look or consider someone else’s perspective … to be unable to imagine that I could be wrong about what I think or see or feel … is to invite narcissistic chaos into our lives.

To purchase this book go to highlight this link, hold down the ctrl button and click at the same time

The book is also available on Kindle. 

Wednesday, October 7, 2015

Israel vs Palestine

This Palestine and Israel stuff is all over the net with lots of hate speech and threats.  It seems that it is popular to stand on one side or the other and shout our mouths off or copy and paste bullshit that we find on the net.  What a waste of time!  If you are a Palestinian – go fight in your own country for what you want.  If you are an Israeli – go fight in Israel for what you want.
I will not get involved because a) hate breeds hate and b) to judge without walking in someone's shoes is the height of stupidity and c) shouting my mouth off won't make one iota of difference and d) from a hell of a lot of reading I can see both sides of the coin. 
Why do South African's get involved with this when our own fucking country is falling down around our ears? Would it not be better to use the energy that hate produces towards at least trying to make our own people and our own country better for all of us?  And would it not do a lot more good if we stopped slandering and stirring up more hate in our world?

Not even on this issue will I take sides – I will walk my own path so that I can look at myself at night, knowing that I did what I could to make my own people, in my own family, in my own neighbourhood, in my own province and in my own country a little happier.  I am again swimming against the tide. 

A Different Kind of Race

In 1856, Ivan Turgenev wrote: "There is nothing more excruciating than the realization that one has just committed an act of stupidity".
Have I committed an act of stupidity to have asked a friend to sign me up for the 5km Cancer Walk at the end of this month? I can't walk from my bedroom to the loo without losing my breath - but I so badly want to be out there in the stream of life. Living in a sterile environment is like living in a prison. I dream of feeling the wind against my skin, walking and laughing with others. It does not matter if the sun shines or it rains, I would love to feel part of the human race again.
I wonder if Algoa FM Big Walk for Cancer will accept a participant in a mask and a wheelbarrow (which I call my wheelchair) when I can't walk any further?
Was this an act of stupidity or was it a step towards a dream? Maybe it is just a stupid dream.

But on second thoughts, if I don’t try then I am a failure.  If I try and fail, I only failed at that task.  Bring it on!!!  Inshallah 

Monday, October 5, 2015

If God is your co-pilot, swap seats

Everyone has the ability to see the spiritual road signs and to experience the divine protection of our Father. But few can. Everybody ‘thinks’ he can do so, but when it suddenly projects itself into his presence, he denies it. He is given the opportunity and shown the way by internal and external signposts, but he denies it. Perhaps he did not actually want it anyway. And so the opportunity passes him by. And if the person who passes his opportunity up is not smart enough to let the whole thing go and move on, he will spend years explaining how he was justified in not taking the opportunity when it came by. 
You need to be in a place of alertness, ready to move with, or accept, the good messages which come your way, which you asked for, no matter how or when it comes into your path. “Watch, for you know not when He cometh”. He comes ‘as a thief in the night’, in the silence and when least expected. The unexpected always happens. ‘Watching’ is not looking for the manifestation of your desires. It is watching the ‘one-hour’ which is so important in the fulfilment of a desire. “Can you not watch with me one hour?” Can you not be aware, awake and vigilant? Stay in the awareness that nothing is impossible; stay vigilant so that you see the opportunities and the protection and the guidance when it happens. Keep the consciousness of “IT IS DONE” and the thing that the world calls a miracle will happen. 

Buy your copy of my book from or if you prefer, it is also available on Kindle.