Category: Uncategorized

I have a living will 31.7.2012


I have become accustomed to the ICU at the Donald Gordon Hospital.  DGH has one of the best Intensive Care Units in the country.  There are always 3 ICU doctors on duty and well as a HIGHLY skilled Head of Department.  No full-time doctors or pain specialists in the Union’s ICU. 

The difference is that the DGH is a private teaching Hospital and does not handle trauma patients.  Only critically ill patients are admitted to the Donald Gordon ICU.   The staff are all ICU specialists.  Ok, I must admit that they also know Vic very, very well.  For the past 7 years they kept Vic alive.  Time and time again she has amazed and astounded them by surviving  every conceivable Super Bug,  ARDS (Acute Respiratory Distress Syndrome), sepsis, organ failure… they know exactly how her body reacts to pain and how she reacts to different drugs.  The doctors that work in the ICU do work at the Pain Clinic.  They understand the benefits of post operation Ketamine Infusions. 

Over the years Vic has spent months and months in the DGH ICU…

When Vic was admitted to ICU at the DGH the last time, one of the doctors said that if she ever decided to give up her fight to live, he would not fight for her.   He knows what she has been through.

This past weekend I spend a lot of time in the Union’s ICU.  More time than I have ever been allowed to spend in the DGH’s ICU. 

Vic, on Sunday morning, was like a wild animal caught in a trap.  Her eyes were crazy.  Vic’s pain levels were horrific and the ICU staff did not know how to handle it.  On Saturday night after the surgery I was not allowed to stay with her, despite the doctor’s instruction to “Allow the mother to stay”.   I had to sit in the “Comfort Room”.  It was so cold in there!  The air-conditioning was turned down to near freezing levels.  I was so cold that the bones in my body ached.  At 03:00 I decided to go home.  I was not allowed to stay with Vic and at that stage she was sleeping peacefully.

 I was woken just after 07:00 by the ICU staff asking me to come to the hospital…

My well behaved, docile child had sworn at her nurse.  She was insane with pain.  Whilst I was telling them what medication she needed to control her pain (yes that is correct) I was trying to calm her down.  I made the mistake of telling her to calm down… That was an epic mistake!!!

We eventually managed to get her pain under control and then the staff asked me to stay…  I basically left ICU when Vic was discharged into the ward Monday afternoon … 

Sitting next to Vic’s bed I looked around and noted that almost 70% of the ICU patients were on life support.  In the one corner there was a young man.  I would imagine that he was in his mid-thirties.  “Was” is correct.  He was declared brain dead yesterday morning.  By now his organs may have been harvested.  Maybe not.  What I am sure of is that his bed is no longer occupied by his imposing body.  Even in the claws of death he had an imposing physique and a presence.  Yet he had no visitors.  Not a single soul came to see him… until yesterday morning when his next of kin were called in and given the news.  One by one they traipsed in, spent a couple of minutes (at most) next to his bed, wiped some tears and walked out…  He was left to die alone.

Other patients had hoards of visitors – each spending a couple of minutes with their loved one and then returning to the cold passages to chat to old friends or other family.  The patient oblivious to their tears and worried faces… battling each “breath” of the artificial lungs… Dialysis machines cleaning their kidneys… blood pressure and heart rate artificially manipulated by chemicals.  Looking at their vitals one would never guess the life-and-death battle raging in their bloated bodies.

I have a Living Will.  I do not want to be kept alive artificially.  I am absolutely certain about it.  I cannot and will not be convinced otherwise.  People should be allowed to die with some dignity.  We all live to die…it is as certain as paying taxes.

What is the purpose of a life with debilitating pain???  I do not want to put my family through it – ever!!  Oh I know my family will miss me.  I know I am loved.  I however know that we live to die.  I look forward to dying.  I look forward to what I have strived for all my life.  Peace, no responsibilities, quiet… I know that I will go to Heaven.  I have already been to hell.  I live hell every day.

If I had been ill I could have handled it.  I would quietly have found a way of leaving it behind.  To stand next to your child’s bed, helpless, hope less and hopeless is the worst situation any parent ever should have to go through. 

So tonight I ask God again:  PLEASE give me the pain.  Allow Vicky to have some quality of life.  Allow her a life.  Allow her to be loved.  Allow her to love unconditionally and without fear.  Please let her be able to run… give her time on a beach; allow her to turn her face into the sun.  PLEASE let her have a normal life, a job, independence or end this journey.

On Monday afternoon Vic was discharged from ICU to the ward.  I asked the doctor to let Vic come home straight out of ICU.  I can take better care of her at home than they can do in hospital.  Vic is home and last night was a night out of hell.  She was so ill, vomiting all night.  She could not keep her medication down.  No sooner did she take a sip or water or it just came spewing out.  Pain control was absolutely out of the question.

Today I received a message from the Pain Clinic that the Hospice application motivation was underway.  Hopefully we will have an answer by next week.  If only I could give Vic meds intravenously it would be so much better.

Vic also needs physiological support/guidance in making peace with her situation.  From her moments of madness in ICU it became clear to me that Vic has some deep-seated resentments and a lot of anger in her.  Vic needs to make peace with her journey and the trip itinerary. 

But more about our family conference and Vic’s emotional battle tomorrow.  It is time for her medication and I need to sleep. 

 

 

 

Vic’s final hospital visit 30.7.2012


Vic's Humerus after Five Weeks

This weekend I saw raw resentment towards me in my little girl’s eyes.

We checked into Hospital on Saturday morning at 08:00.  Vic was seriously peeved that she did not get a private room as per the doctor’s instruction.  Just to aggravate the situation the lady in the opposite bed was truly strange… She was loud and used bad language.  She kept arguing with her husband, she would tell him to make a sexual departure, he would storm out of the room and she would shout obscenities at him.

Then she started telling us about this wonderful neurosurgeon that she works for.  She and Vic ended up comparing back-op war wounds … Of course Vic won the contest hands down!  Vic then said that she had decided no more surgeries…wow!  Did this set the neighbour off!  She took the moral high-ground and started telling us that we must have faith and God will heal Vic.  Vic was in hospital because we keep asking God to heal her.  We should only ask once and then have faith…

She laid hands on Vic when I went downstairs for a cup of tea.  I would never have allowed it!!

Please don’t misunderstand me – I have nothing against religion.  Religion is important.  I do have a problem with a person who curses and swears and behaves in the most appalling manner and then think they can cure my child.  Jared said to me today “Oumie, I don’t want to be a Christian like that …”

I do not stand in judgement of anyone.  It is not for me to judge. I do have a problem with the ultra-religious people who judge others…surely that is the biggest sin?  As my friend Marlene used to say “Who died that you think you became God?”  If you are a Christian then surely you must believe that the blood of Jesus was spilt for ALL sinners and not only a select, elite group of Christians.  If you disapprove of someone’s lifestyle or actions, condemn the sin and not the person…

People who claim to be “deeply religious” have turned their backs on their loved ones because of a lifestyle choice they made.  They will not allow their own sons and daughters into their homes because they disapprove of the lifestyle choice.  Yes, our loved ones make decisions that we do not condone or support but does that give us the right to turn our backs on them because of that?  Surely love is unconditional?  Through thick and thin?

I digress… Immediately after laying hands on Vic the lady swore at her son and made a racist remark… I suppose the Jesus she proclaims only died for white South Africans…

Jared sat at hospital with us all day Saturday.  He is old enough to want to do it!  That young man adores his Mommy.  Jon-Daniel copes in a different way.  He went to a private coaching cricket lesson at the Club in the morning and then went to Nathan, his best friend.  Jon-Daniel makes Vic laugh.  Jared makes Vic coffee.

Two different boys with two different ways of coping and two different ways of expressing their love.   Yet united in their love and despair for their mother.

Vic ended up going into theatre just before 19:00 Saturday night…she was starving!!  Poor little poppet!  I was really annoyed that we had to wait from 10:00 to 19:00 to see the inside of the theatre.  HOWEVER, this is where there is a twist in the tale…a second surgeon appeared in the waiting area and looked at the x-rays.  He was most impressed by the complexity of the fracture…He is a humerus specialist who has in-depth knowledge and experience with Osteogenesis Imperfecta!  I must add that he too had never had an OI patient as old as Vic.  So Vic had two specialists operating on her little arm.

By 21:15 the anaesthetist came through to tell me the operation went well and that he was sending Vic to ICU – mainly because they are petrified of the high dosages of opiates that Vic is on and how it may counteract with the medication that Vic’s on.

History was made Saturday.  A doctor wrote on Vic’s file “Mother of patient to stay with her”!  In the past doctors would make U-turns in the passages to avoid me and here is this wonderful man telling the ICU staff “This mother must stay”.  What a bright and intelligent young man he is even if he charged double medical aid rates.

Vic was however extremely angry with me because she was sent to ICU.  Vic is petrified of ICU and does not appreciate that her pain control is so much better in there than in a ward.  She cannot be given the amount of opiates that she needs, for pain control, out of ICU.

I am delighted as I told the anaesthetist that the Jurnista is new and although I did not give her one Friday night as I was scared that it may adversely affect the anaesthetic and post-op pain control.  (Thank you Google for the fact sheet).  When he said that it is better for her to go to ICU all Vic kept saying was “No Mommy, No Mommy!”  She cried.  I saw the resentment in her dark, sad eyes when she looked at me.

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Vic’s Humerus Pinned and Fixed

For once I did not care.  I love my child and I will do anything and everything to spare her pain.

I have to find out which anaesthetic they used.  The last two procedures at the Union resulted in terrible aggression in Vic.  Vicky is normally a meek and mild little soul but boy, did she rip into me and her ICU sister.  She told me exactly what she did and did not think of me.  It was a horrific experience.  I hope and pray that it was the anaesthetic and not actual resentment towards me that triggered her hate speech.

Vic ended up spending 2.5 days in ICU.  I never left her side but to go shower at home and take Jared to the urologist this morning.  The ICU at a standard hospital is actually not equipped to handle someone as ill as Vic and in such a pain control programme.  I also think they were too scared to be left alone with her after the tongue-lashing she gave them whilst I was showering on Sunday morning.

Well this is now behind us.  We will hope and pray that the sepsis in Vic’s abdomen and spine will not attack the pins in her arm.  That Vicky will get better and enjoy some Jurnista quality of life!

I want to blog on ICU’s and what we subject our loved ones to next.  I am just too tired and emotionally drained to even attempt it today.

Is Vic in trouble? 29.9.2012


It is 22:45 and I am sitting in a chair next to Vic’s bed. Her heart rate keeps climbing and is sitting at 115 no matter what. Her oxygen levels are dropping despite the oxygen. And her blood pressure is sky high.

Despite the meds her temperature is sneaking up. Vic’s body temp is naturally low – 35.5 and is now up to 37.8 degrees C. I know it is only a low grade temperature now but I also know my child. Something is brewing.

Vic Update 29.7.2012


Vic finally went to theatre on Saturday evening for an “emergency” operation. The arm was pinned. It is a long story that I will share once Vic is out of ICU.

She is doing well. Pain control as always was a major issue but is now under control again.

I have decided that Jurnista is a wonder drug.

Tomorrow Vic will go back to the ward.

Now we start worrying about the sepsis spreading from the septic spine and abdomen to the virgin arm.

Vic Olympic Champion


Vic Olympic Champion.

Vic Olympic Champion


Yesterday we did not see the GP for Vic’s arm – she was just too exhausted to get out of bed.

We arrived at the Urologist at 14:30 and low and behold he is at another practice in a different suburb.  The receptionist gets such a big fright because of the size of Jared’s kidney stones that within minutes she is busy arranging theatres for emergency surgery!  Eventually I got her to HEAR what I was saying – the kidney stones are not obstructing the urinary tract!  A new appointment is scheduled for Jared to see the Urologist on Monday.

We arrive home and the doggie parlor people had not picked up JD for her final pampering session.  Anyway she had a better night the previous night and all of a sudden I am doubting my decision about sending her to Doggy Heaven.  Maybe this is a sign that it is not her time!

With minutes to spare, just before I add garlic to dinner, my wonderful, caring friend Gillian arrives.  (Gill is allergic to garlic and 1000 other things…) Out of the blue with armloads of gifts…  A lavender plant and lavender hand cremes for me (to calm me down), rusks for Danie, chocolates for the boys and waterless Magnolia hand sanitizer and linen stray for Vic!  How precious is my friend?  She read my blog in the morning and decided that I need moral support!

So, egg on my blog face… JD is still walking around, Jared is in high spirits because he is not in theatre and after such a bad start Vic is having a good afternoon.  (The Jurnista is working so well!!!)

I was so happy to see my friend!!

Gill and I, over a cup of tea, are sitting discussing Jared’s situation when she asked “Who is his Urologist?”  I told her that it is Dr S; he is new in Alberton so we were able to get an appointment quickly… Gillian went white!   In her clipped manner of speech she declared “Over my dead body!  Do you know what he did to Sandra, (her sister-in-law)?  He left the plug in her when he did her bladder repair 6 weeks ago!  Sandra nearly died!”  Gill then proceeds to tell me that at Sandra’s book club meeting the girls were discussing Sandra’s operation.  Naturally the girls wanted to know who the surgeon was and guess who?  Yes, Dr S…  That apparently triggered two more of the ladies relating their stories of severe sepsis, after urology surgery, to their husbands and the urologist was…. Wait for it….. Dr S!!!!!

There is a God!  Imagine if Jared went into theatre yesterday and he was Case No 4 GONE WRONG???

I had just started writing this posting today when the phone rang and guess what?  Dr Y’s receptionist was on the line.  Dr wants to see Vic… With the speed of lightning I dressed Vic in a tracksuit and sped off to the Doctor’s rooms.  The receptionist nearly fainted when she saw Vic’s hand… After a couple of minutes she said if we had not lived close to the consulting rooms she would have told us to come in on Tuesday next week… she did not feel like working late and yesterday she cut down on the number of consults he was doing because she had stuff to do…!  Obviously her conscience got the better of her and she told him Vic had phoned.  He told her to get hold of Vic to see him today still…

The doctor was shocked when he saw how swollen Vicky’s hand is.  He took the cast off and the arm is extremely bruised and very, very sore.  We had a long discussion and the decision was made that there is no alternative but to operate.  Vic will check into the hospital at 08:00 tomorrow morning and he will operate at 10:00.

I am very concerned about the danger of sepsis.  Obviously Vic will go onto strong antibiotics but she already takes antibiotics every day of her life.  As a matter of fact she takes antibiotics twice a day, every day of her life.  She already has sepsis in the spine and abdomen.   I do however realize that there is no other option but to do the arthroplasty surgery.

I am however concerned that a silly little girl can decide how many patients a doctor can see a day not because of his time constraints but her nail appointment at the beauty parlor…  I am very concerned that a receptionist can play God and could cost my child her arm.  Yesterday it would have been a standard surgery but now it is emergency surgery that has to be performed on a Saturday morning.  What a country we live in!

What on earth can make a doctor appoint such an airhead in his practice?  We end up with a silly young woman who do not realize the importance of being able to distinguish between a patient needing to see a doctor urgently and her +*%&% nail appointment!

I have tried to Google “humerus + sepsis” but the articles I found were just too complicated for me to understand.  So, in faith, I will accompany Vic to hospital and try to get her through the post-op pain and onto the road to recovery.  I can only hope that she will not lose too much functionality

I am watching the opening of the 2012 Olympics and am filled with deep sadness for Vic and other people in similar situations to Vic’s.  Somebody else’s sons and daughters, the perfect athletes, competing for the top sports awards of the world….  Dreams will be realized or shattered.  There will be tears of joy and tears of heartbreak…

Vic has never been able or allowed to do any sport.  People of her age are still climbing the ladder to success.  Vic has never really worked or climbed the corporate ladder.  Vic’s life is over without it ever really started.  Vic literally only knows tears of pain and suffering.  However if there was an Olympics for pain, suffering and endurance, my child would take gold!!

Vicky Bruce, Champion of Champion in the Pain and Suffering Race!   All time winner of Survivor OI.

 

 

Relax, it’s just a bend, not the end!


Relax, it’s just a bend, not the end!.

Relax, it’s just a bend, not the end!


We are seeing a GP tomorrow morning regarding Vic’s arm.  Both her arm and hand are so swollen that I am concerned that she may actually lose her arm.  It has now been more than a month from the day that she fractured her arm.  When I bathed her tonight I removed part of the dressing that is protecting her arm.  Her arm is still black and blue and horrifically swollen.  I am convinced that she has pressure sores under the cast.

Today was a truly exciting day… (Relax, I am being facetious)

We phoned the Orthopod that treated Vic in hospital.  Sorry, he (Dr Y) can only see Vic next week!  We then phoned her original Orthopod (Dr V) with the permission of Dr Y.  Dr V’s receptionist informs us that Dr V will only see Vic with the written consent of Dr Y.  We tell her that Dr Y is too busy to write a letter but has advised us to get Dr V to phone him (Dr Y) if he needs to speak to him.  “We will not even allow you into Dr’s rooms without a letter.  Doctor V is too busy to phone.  Get a letter if it is so urgent for you to see Doctor!”

Well!!!  What the hell do you do?  You cannot force a receptionist to allow you to see a doctor.  Even if you force your way into the consulting rooms you cannot force a doctor to see you.

ImageImage

The fact that Vicky is terminal does not give any doctor permission to wash their hands off her.  It is written into our Constitution that every citizen of this beautiful country has the right to medical care!!  “In terms of South Africa’s constitution each person is entitled to human dignity, equality and freedom. This should also be the case when a patient receives medical treatment in the private and public sector.

The Government has an obligation to protect the life of every person in South Africa. The patient has the right to receive medical treatment.”

I promise anyone who cares to read this or hear me: if there is permanent damage to Vic’s arm, I will sue both doctors, regardless of her overall medical condition.

Tomorrow we will see Vic’s GP and hopefully she can get Vic into an Orthopod’s rooms!  Why only tomorrow?  She is too fully booked today to see us today…

Today I had a message from Dr Jaffer Hussain asking whether the Jurnista is working.  Not only did he care enough but he asked whether I wanted him to ask Prof Froehlich to motivate Hospice?

I received a message from my brother today that read:- Often when we lose hope and think this is the end, GOD smiles from above and says, “Relax, it’s just a bend, not the end!” 

Is there hope after all?  I am cautiously optimistic!

Tomorrow afternoon we see the Urologist.  Strangely I am at peace about Jared.  God cannot be that cruel so I trust in a positive outcome!

JD (Jared’s Dog), is 15 years old and suffering from 3rd degree congenital heart failure.  In human years JD is at least 105 dog years old. She has been such a healthy little dog but is now starting to battle.  She coughs throughout the night and end up sitting upright to breathe easier.  When I get home she is so excited that she has a coughing spell.

JD follows me where ever I go.  If I step back I step on her.  She sleeps in my room.  JD and I have a system worked out.  When I come out of the shower she is already waiting for me.  When I go downstairs, with her in tow, her little tail is wagging and she is clearly very excited to see what little snack she is going to have.  I know she is not supposed to have little snacks but heaven helps the person who tries to feed me hard, dry biscuits when I am 105 years old!

I do not want JD to suffer any further.  Tomorrow morning she will go to the parlour one final time.  In the afternoon she will have an injection at the vet and gently drift off to Doggie Heaven.  Vic and Jared want to go with her.

I am a coward.  I do not have the resilience and strength to take her.

Vic and JD watching a movie

Dèjè vu


Dèjè vu.

Dèjè vu


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Today at 16:20 we saw the doctor regarding the results of Jared’s blood tests.

When I saw the pain in Vic’s eyes it propelled me back 35 years ago when she was diagnosed.  I saw the same pain in Tienie’s eyes when Vic was diagnosed with Osteogenesis Imperfecta.  Well not exactly that day, but the day his mother told him that his paternal father had died at the age of 35 from an undiagnosed disease that had OI symptoms…

When Vic decided at the age of 21 to get married Tienie and I really weren’t happy.  We felt that she was too young and the way forward with OI would only get more difficult.  I spent a lot of time talking to Vicky and Colin about OI and the fact that they could never have children.  Vic wanted to get married and those of you that know her will know that once she has made up her mind nothing can or will stop her.

The day of the wedding I sobbed my heart out.  She looked so beautiful!!  I had a premonition of impending disaster… but then again most mothers feel that way when their daughters get married… Vic was just so young and had such a poor prognosis.  I had been a child bride and knew how difficult it was.

Vicky fell pregnant six weeks after her wedding.  The Sunday night they came to tell us I sobbed and sobbed!!  I immediately made an appointment for Vicky and Colin to see the Wits Dept. of Genetics on the Wednesday.  I went with and until today remember the feeling of doom descend on me when the genealogist strongly advised Vic to have a legal abortion.  The baby had more than 50% chance of being born with OI or at best would be a carrier or the OI gene.

Vicky refused flat out to have an abortion.  She said the baby was straight from heaven.

We went to see the gynaecologist and I saw the baby’s heartbeat.  Two weeks later Vic was in hospital with a threatening miscarriage.  She fought for her baby through-out her pregnancy.  I fought with her because of her baby…  I was fighting for Vic’s life.

Tienie was so angry because Vic was pregnant that he refused to speak to her for months.  I went and saw him at his office at cried.  I begged him to put aside his anger and support her – we may lose her in childbirth… Tienie looked at me and said: “We all grieve in our own way.  I wish I could cry…)

Throughout the pregnancy I was petrified that Vic would give birth to an OI baby.  On Christmas Day Vic went into labor… On the morning of the 26th Vic had a cesarean section and gave birth to a healthy, albeit ugly, little son.  When they ran down the theatre passage with Jared in an incubator I caught a brief glimpse of him.  A rush of love, like I have never experienced before, overcome me.  I cried from the wave of love.  Colin stood crying next to me and we just hugged and clung to one another…

As a baby Jared was very ill.  He spent a lot of time in hospital.  At one stage the doctors thought he was going to die – he battled viral infections until he was about 5.  At the age of 5 Jared developed a sugar problem whilst Vic was ventilated https://tersiaburger.com/2012/05/28/22-2-2002-to-28-5-2012/Osteogenesis Imperfecta … 22.2.2002 to 28.5.2012.  Doctors said it was stress related.

At nursery school Jared started injuring ligaments, twisting ankles.  It got worse as he tried to participate in sport when he started fracturing ankles.  At age 13 he was diagnosed as diabetic.  On 27th of July Jared had a Nissin repair https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/ and https://tersiaburger.com/2012/06/28/a-vicious-cycle-of-nerves-2/.

Last week Jared developed chest pains again.  ECG, CT scan, Blood tests and X-rays…Result of CT showed numerous kidney stones.  Results of the bloods read as follows “Low positive ANA titres are often non-specific and may be seen in elderly individuals, following viral infections or tissue damage, or in patients with malignancies.  It may also be seen in normal individuals, relatives of patients with connective tissue diseases, as an early marker in individuals that may later develop a connective tissue disease and in association with other auto-immune diseases, e.g. rheumatoid arthritis”  We will firstly see a Urologist to resolve the kidney stone issue and then a Physician.  Maybe it is nothing to be worried about.

When I got home today Vic asked me what was wrong.  I tried to lie to her but she saw right through me.  When I showed her the blood test results she just sobbed.  I saw the pain that Tienie felt all the years of her life, the guilt of knowing that a faulty gene has passed from parent to child…

Jared is strong and resilient.  I have faith that he will get through this trying time stronger than before.  I am confident that it will not be too serious.

I wish with every fiber in my body that Jared could have a sterilization operation that this curse can come to an end.  One way or another I am going to break this child’s heart when I have the “Please do not consider procreation until there is a cure or a way of isolating the faulty gene…”  We have touched on it but I am afraid it will have to be a serious chat.

My heart breaks for my child.  I wish she could go through this phase of her journey without this pain and worry… I wish that I had never said to her “I don’t know if I can go through this again…”  I wish I never heard her say “Mommy do you want me to go to a home?”

I hate my life.  I hate the life my poor child has to endure.  I hate the life that Jared may have to live.

A Poem About a Mother’s Love for Her Very Sick Child


I know that I would do all things for you.
My spirit would always take care of you.
And when I die and leave this world behind.
You can be rest assured that my love will stay behind.

Even though sometimes we’re far apart.
You have always remained right here in my heart.
I will forever whisper in the wind
Unconditional love that’ll forever stay within.

If only I could go wherever you go
So I could do things I need to do for you.
Since I can’t, the best sacrifice I can give
is keep you in my heart and allow you to leave.

I’m lifting up the burden in your heart
‘Cause I know that you don’t know where to start.
I’m transferring all the pain inside of you
Into my care, into my heart, and now it’s through.

I love you so much and I know that I can bear
This greatest pain to let you go, I swear.
Know in your heart that my love will forever stay
Even though I would seem so far-away.

I’ll be your strength that’s why I’m relieving you
Of all the pain and tears inside of you.
No need to worry for all your pain will be gone.
It will be with me now, and I shall carry on.

You may think I’m letting you go without a fight.
If you only knew how I fought for you each night.
Just remember that there are signs everywhere.
So look around and acknowledge that they are there.

God said to me that love will always prevail.
And each day there is a tale for you to tell.
If you could already see the signs before your eyes.
Embrace it now. Let it stay. It is your guide.

God said the signs may be a word or two
When you least expect it, it is said to you.
It may also be the people that you have met.
Places, names, or things that you kept.

God told me to tell all these things to you
So happiness would set in and peacefulness, too.
I’m always here, and I’ll always love you.
I never wanted you to be in pain. It’s OK for you to go.

http://authspot.com/poetry/a-poem-about-a-mothers-love-for-her-very-sick-child/?fb_action_ids=3587335596077&fb_action_types=og.likes&fb_source=timeline_og

Ramadan Mubarak to all my Muslim friends


May This Ramadan be as bright as ever.
May this Ramadan bring joy, health and wealth to you.

May the festival of lights brighten up you
and your near and dear ones lives.

May this Ramadan bring in u the most
brightest and choicest happiness and
love you have ever Wished for.

May this Ramadan bring you the
utmost in peace and prosperity.

May lights triumph over darkness.

May peace transcend the earth.

May the spirit of light illuminate the world.

May the light that we celebrate at Ramadan
show us the way and lead us together on the
path of peace and social harmony

Wish you a very happy Ramadan Mubarak

Thank you God! 20.7.2012


Thank you God! 20.7.2012.

Thank you God! 20.7.2012


Vic and her big sister Esther

It was with fear and trepidation that I gave Vic her medication last night.  Esther, (Vic’s big sister and a pharmacist) asked me whether the Jurnista replaced the morphine and was just a little surprised that it was in addition to the Morphine, Neurontin, Degrenol and Stilpayne.   My research really scared me yet strangely I was at peace.

By 24:00 Vic felt no difference and her pain was at a solid 9.  By 02:00 her pain was a little easier.  Vic had a fairly good night.  But she is having a very good day!!!  The Jurnista appears to be working!  Vic rested well this morning and went out for coffee with Tracey!  How absolutely amazing is that!

Last Sunday, Frik, a Christian colleague phoned me after church and asked me to give Vic a message.  “Please tell Vicky that God wants me to tell her that He loves her”…   She was too ill and I only told her on Tuesday.  I missed the Tuesday Pain Clinic appointment… On Thursday the Pain Clinic doctor is a wonderful, compassionate, young Muslim man who showed mercy and compassion …

My faith has often wavered over the past ten years.  Not in God but in a God of Mercy.  The actions of the church, Christians, doctors, nursing staff, radiologists, Hospice, family and friends, mostly reflected a cold, loveless society that does not begin to understand what compassion means

When we first received Vic’s death sentence there was an absolute outpouring of love.  But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives.  My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace.  Well, this time you cannot hurt us because you are faceless.

I am digressing.  This week we were reminded that there are still angels around.   A compassionate man who prays for pain relief of a young woman he has never met, a doctor who prescribes palliative care medication…  The Jurnista could hasten Vic’s imminent demise but I don’t care.  I would rather she spend one pain free day with her boys and family than a lifetime in the pain that she lives with.

Many people have left wonderful caring messages on my email, comments on the blog and Facebook.  Thank you!  It really does mean a lot to us.   Vic does not read my blog neither do her boys.  But Vic has truly appreciated the contact some of her old school friends have made.  As I said before, dying is a lonely business!

But today we celebrate the wonderful new drug!  I thank God for sending angels along our way.  I thank God for His message through Frik, when I was at the lowest low in my life!!  I thank God for Dr Jaffer Hussain!  I thank God for your messages of encouragement and above all I thank God for Vic’s good day!  Thank you, thank you, thank you God!  Even if it is only one good day!

Jurnista – hope or looming disaster? 19.7.2012


Jurnista – hope or looming disaster? 19.7.2012.