Tag: Vicky Bruce

5 Stages of Dying


It became crystal clear to me when Vic yelled at me in the ICU that she had deep-seated anger issues with me and where she was in her journey.  Dying is unknown territory and none of us have walked this road. Yet we are all morbidly curious about dying. Everybody has some shadows of uncertainty.

According to Hospice there are FIVE stages of dying.

1.      DENIAL: “I’m too young to die. I’m not ready to die (is anyone ever really ready?)”  It became clear to me that despite the fact that Vic was sentenced ten years ago she is still in denial. Even after Brendan had informed her that nothing more could be done for her she still clings to her lifelong defiance of death. The prediction from one’s physician of imminent death can do several things. It can give you time to prepare, take care of business, close doors, make amends. The shock begins to ebb as you come to grips with approaching death.  Vic has some doors to still close.  Her business is in order.  She has written letters to her loved ones, bought major birthday gifts and cards for the boys

 2.      ANGER: Suddenly the terminally ill person is no longer in control of their life.  They have no choice any more – the die is cast….. They are going to die. This is really where Vic is now.  She has lost control of her life.  At the age of 37 she is living in her mother’s home, decisions are made for her she has become a child again.  Her anger on Sunday morning was directed at me.  Her profuse sense of helplessness and loss of control is however not a new feeling.  Vicky has endured a long, debilitating illness.  Doctor error has robbed her of a life.  Illness has robbed her of her dignity.  She is angry with God for allowing this to happen to her.  She is angry for God not taking her.  On Monday afternoon she said “Mommy, God does not even want me…”She has been robbed the opportunity to see her sons complete school, university, get engaged and eventually marry……  Many people die too early but at 37 it is mainly due to misfortune, wrong place wrong time, an accident…..  At the age of 27 Vicky was sentenced to death…..

 3.      BARGAINING: I do not know what bargaining Vic has done with her God.  I know that I have made lots of bargains with my God.  Just one more Christmas….. Just one more birthday…..

 4.      DEPRESSION: Knowing that you are dying must be depressing!  This must be a normal part of the process of preparing to die. Vic is depressed about her inability to deal with her responsibilities. Vic is too ill to get away from the symptoms of her illness …..  She waits for death every day. Vic is depressed about the pain that her illness is causing her sons, friends and family.  Vic is depressed because she feels that she has failed her sons.   Vic is depressed because she is lingering…. Vic is depressed about the loss of love that she has suffered.  Vic is depressed period!  But with good reason.  Antidepressant’s are part of the pain control regime.  If it is helping for her pain that is great.  I hate to think what her mental condition would have been if she had not been on antidepressants.

 5.      ACCEPTANCE: Vic is not at this stage yet.  This is one of the main reasons why we need Hospice.  Brendan (her Gastroenterologist) referred her to a councillor last year to guide her into this phase of her journey.  Vic went a couple of times and then it became a matter of budget – medication or counselling.  Medication won.  Hospice defines acceptance as follows…”Acceptance is NOT: doing nothing, defeat, resignation or submission.  Acceptance IS: coming to terms with reality. It is accepting that the world will still go on without you. Death is after all, just a part of LIFE.”

I see absolutely no peace in Vic.  She is still kicking and fighting.  At times she may fool herself into thinking or believing that she has accepted her situation but it is crystal clear to me that it is not the case.

We met as a family on Tuesday evening to discuss all our frustrations.  It becomes difficult to handle one’s day to day frustrations as we have different agenda’s.  A while back Vic asked my permission to give up.  She spoke to the boys.  We cried and gave her “permission”. 

The family immediately went into palliative mode.  No demands or expectations for any normal functionality from us to Vic….. Therein lies the issue.  We became an “Us” and “Her”… “Us” became the protectors and “Her” became the invalid.  We tippy toed around Vic.  The boys stop bothering her with everyday issues like “Can we go to the movies”; “please pick me up at 16:00”; “Do I have to go to extra lessons?” When we walked into her room and she was sleeping we would turn around and walk out.  We would show no concern for the amount of pain medication Vic was on. 

It is so easy to slip into a “mode”.  I took all responsibilities out of Vicky’s hands, we as a family organized our lives around her pain levels and energy (or lack thereof) levels, we stopped laughing and living in our house.  We were all dying!

When she lashed out at me in ICU I realized that we had serious problems.  Vic was not ready for Stage 5.  She started kicking against death – again.  Her fight is back.

It is however a difficult and delicate balance between pain-free and functional…..  Vic said that she wanted to reduce her pain medication as maybe she would not be so tired all the time.  By Monday evening she was in so much pain that she was vomiting.  She could not keep tablets down….. It took two days to get her pain under control again.

I have also read Katie Mitchells Blog on Chronic Pain and the way that brave lady articulates her battle with pain truly opened my eyes.  I realize now that I cannot take living away from Vic whilst she is still breathing.  I have to let go.  I cannot protect her against pain.  I cannot protect her against death.  I have to try to look at her through her pain filled eyes as I don’t understand pain or her frustration.  I am active and busy.  Today I joined a gym so I can train with the boys.  I do the things with her sons that Vic would LOVE to do!  A couple of weeks ago Vic said “You are the fun person in the family.  You do all the fun things with the boys” Obviously there must be resentment and anger (Stage 1). 

But we live in a civilized home.  We don’t scream, shout or curse.  We bury things under the carpet.  We walk away from conflict so we don’t know what the other is thinking or feeling.  We only see the veneer..… How terribly sad!!  We have lost our ability to function properly.

So from now when I am frustrated with Vicky attempts at doing things for herself or the boys I will leave her be!!  PLEASE God help me!!!!  I am such a control freak!!!  I will endeavor to not stop her from going for a cup of coffee with one of her friends.  I will just pick up the pieces afterwards. 

I have to stop being selfish.  I realize that I was trying to keep Vicky pain-free as it is easier for me to handle!!  Pain free means medication on the strict regime, no strenuous activities, protected and wrapped up in cotton wool.  Vic must make her own painful decisions.  If she wants to take the boys to school who am I to stop her?  Of course she must but not on 400 mg of morphine! 

The problem is that I look at Vic and all I see is that fragile little toddler…… And she is sick.  Very sick!  I want to protect her, breathe for her, die for her.  Vicky is my baby.

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.

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!


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.

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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


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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.

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.

Jurnista – hope or looming disaster? 19.7.2012


I woke up early this morning with a very heavy heart.  It was Pain Clinic Day again.  There is no appointment system – it operates on a first come first serve basis.  Wonder above all wonders no traffic delays… I was first to arrive!!!

The amazing thing is that one of Vic’s ICU doctors ran the Pain Clinic today.  He immediately recognised me and we spent an hour discussing Vic.  He looked at her X-rays and was mortified by the fracture.  He was so sympathetic.  Over the past 5 years he has often been part of the ICU team fighting for her life.  He is well aware of the prognosis and confirmed that the arm would be terribly painful and that there was no chance of it mending.  He knows exactly what her little body has been subjected to over the years.

 We will try an additional tablet, Jurnista, which apparently works on two different pain receptors.  “Hydromorphone controlled-release belongs to the family of medications known as opioid analgesics (narcotic pain relievers). It is used to treat chronic severe pain. Hydromorphone works on the brain to increase the ability to tolerate pain. Hydromorphone controlled-release works by gradually releasing the medication into the body to help control pain that requires the prolonged or continuous use of an opioid pain killer.”

 

The side effects seem severe.  But he double checked with the head of the department so I am sure they know what they are doing!  I know that I will not have a peaceful night’s sleep at all!  But so far so good – it is a slow release tablet so no effect at all yet.  Oh, I forgot – it is highly addictive!

I am cautiously optimistic!  Just a little reprieve would be great!

 Poor Jared.  Just when we thought he has recovered so well from the Nissin Repair, chest pain strikes again!  (Nissen fundoplication is a surgical procedure to treat gastroesophageal reflux disease (GERD) and hiatus hernia. http://en.wikipedia.org.)

Jared was born with a reflux problem.  He was the best projectile vomitter ever!  As he grew older he stopped vomiting (in public) and never complained.  He then started chewing Rennies.  No matter who he went shopping with, he always came back with a pack of Rennies.   Obviously nobody reconciled his Rennies intake…  Until he developed chest pains!

Long story short is that after six months of treatment, the decision was made to do the Nissen repair.  I may have blogged how well Jared did post-operatively, how brave he was and how wonderfully he recovered.  So it came as quite a shock when I received a call from school yesterday asking me to pick Jared up as he had severe chest pains again…

 We spent the afternoon at the doctors.  Chest X-Ray, ECG and then a CT scan.  CT showed up several kidney stones… Average size 6.6mm.  The chest pain was caused by something called Costochondritis.   Costochondritis is inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone or sternum. 

Today Jared went for blood tests.  Once the results are back we will start seeing some specialists to resolve the kidney stone and calcium build-up problem.  The Dr suspects Jared has either an autoimmune and/or connective tissue problem.

 I was thinking today, that if we only have one life, how come it is so crappy?  Why can I not be the ill one?  I have made many mistakes in my life and stepped on a couple of toes in my career.  People love me or hate me.  Vic has never deliberately gone out to hurt anyone.  She was born with this dreadful disease.  And now my beautiful Jared… I could not bear going through this again with him.  He has such a pure heart.  The scariest thing is that he has witnessed his mother’s struggle and steady decline over the years. 

ImageThere are times that Vic cannot remember – the times that she was in ICU, ventilated, sedated, critically ill – all of this the boys lived.  Vic does not know what tomorrow holds but if Jared is diagnosed with OI he will know exactly what lies ahead of him.  I see the helplessness in his eyes when he looks at her.  I hear his frustration with her battle…  Please, if there is a God of Mercy, let Jared be spared this. 

Tonight I am not in a happy place.  I spoke to the UK kids and feel content that they are settled and doing well.  Spoke to the little ones but the longing is worse than ever.  Chloe graduates tomorrow.  I am not there to share this milestone in her life.

 Life sucks.

Image

For some dying is hard work. 18.7.2012


Some people take their time and linger. Some people get it over with quickly. For some dying is hard work.  But all of us are heading towards the same destination. Passing through our physical stages of dying.  Into death…

via For some dying is hard work. 18.7.2012.

For some dying is hard work. 18.7.2012


Jon-Daniel, Jared, Tersia, Vic, Dad
Less than one month before my Dad died.

“Hope provides us with the psychological and emotional energy to accomplish what those without hope often considers the impossible.”

The journey of dying has many stages – I have heard it called check-in stations.  I know that some people bypass some of the stages/stations.  Some people take their time and linger.  Some people die quickly and easily, like my beloved Dad and best friend Marlene.

My dad suffered with a terminal illness called Alzheimer’s.  It was dreadful seeing that proud, dignified man’s brain slowly degenerate.  He lived with us for the last 18 months of his life.

After a year we decided to employ a full-time caregiver to keep Dad company and to assist him with daily tasks such as showering etc.  On the 28th of April we had a wonderful day with all the kids – our annual Easter Egg Hunt.  Dad played with the little ones and at the end of the afternoon abruptly got up and walked off.  We let him be – he got tired of people and confused after a while.

An hour and a half later we walked one of the kids to their car and found Dad on the little bridge outside his flat.  He had fallen and was unable to get up by himself. I remember thinking that I would have to move the bridge.  Obviously my Dad’s balance was deteriorating.  I also remember thinking that it was such a pity about the bridge – it was such a pretty feature in the garden…

On the 2nd of May 2011 Dad’s eyes are clouded over and he slept all day.  He recognized no-one and his legs no longer received the walk commands…  Every time he got out of bed he would fall.  I was sleeping on the second bed in his room so I could hear him get up.  I would put my arm across his chest so I would wake up when he moved.

On the 4th of May 2011 Vic was admitted to hospital for operation number 80.  On the 6th of May Vic spent 6.5 hours in  theatre with her colostomy reversal.  The first time ever Brendon Bebington did not use the dreaded words – “I am cautiously optimistic”  However in true Vic form Vic went back into theatre on the 7th of May for another 3 .5 hour procedure.  Richard, the anesthetist, inserted the needle into the wrong vein when they mainlined her… Vic had asked him to try and avoid getting her hair all elastoplasted.  Even the pain of the Elastoplast in her neck is too much post-op.  Apparently it is not a common error but it happens.  With Vic’s blood clotting problems is was a dangerous little exercise getting the needle out of the artery…

By the 9th of May I was absolutely exhausted.   I had been unable to spend any time with the boys.  And they really needed me.  Between Vic/hospital/work/ Dad and the boys I was absolutely torn.

That night I did not hear my Dad get up during the night.  He fell again.  We managed to get my Dad back into bed but at 12:30 the next day Dad fell again and this time he was hurt badly.  Dad was admitted to hospital and due to the need for 24/7 care was admitted to ICU.  Whilst Dad was being admitted I had a phone call from my best friend Marlene’s mother saying that she found Marlene in her room, she thought Marlene was dead.  Thank God Danie was with me and he stayed with Dad when I rushed off to Marlene’s.

My dearest friend was dead.  She had simply had a heart attack and died!  I had tried to phone her from the hospital to tell her about my Dad whilst she was dying herself!

The next day I met with the medical team.  Dad appeared to be in a coma.  The physician said that Dad had pneumonia.  The Neurologist confirmed that Dad was in the Severe advanced stage of Alzheimers.  The Specialist surgeon wanted to operate on my Dad’s aneurysm.

I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia.  There would be no operation.  The Physician agreed with my decision.

On the 13th it was my dearest Marlene’s funeral.  The next day I discharged my Dad from the hospital and brought him home.  We had received the Hospice bed and Hospice had evaluated and accepted dad as a case.  On the 16th Dad had a lucid visit with Ester and Yuri and Hospice started administering Morphine, Dormicum and Serenace subcutaneously.  Dad battled to swallow and I was pretty distressed about his liquid and food intake.  Dad’s core body temp had dropped to 34.5 degrees C.  Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake.  On the 17th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …

I played his favorite classical music and tried to keep him comfortable.  I treasured every moment that I sat and listened to his labored breathing but I was at peace.  There was nothing unsaid between the two of us.  Yet I was so sad…I did not expect it to happen that soon.

On the 20th of May my Dad lost his battle against Alzheimers when he forgot how to breathe.  Twenty three days after his first fall…

Why the detailed timeline in this post?

Some people take their time and linger. Some people get it over with quickly. For some dying is hard work.  But all of us are heading towards the same destination. Passing through our physical stages of dying.  Into death…

For a long time Marlene wanted to die.  She did her best and yet only when it was her time did she go.  Not on her timing, terms or conditions.  But when her time came it was quick and hopefully not too painful.  Marlene wasn’t ill.  She was sick of life!

If I could ask my dad I think he would have been surprised at how quickly he died.  Do I regret my decision to not allow aggressive treatment?  No!  I hope that if ever I am in the situation that my Dad was in someone would afford me the mercy to allow nature to take it course!

Vic has lingered for 10 years…  It is really hard work for her…

I am going to smile and make you think I am happy 17.7.2012


I am going to smile and make you think I am happy 17.7.2012.

I am going to smile and make you think I am happy 17.7.2012


Image” I’m going to smile…and make you think I’m happy…I’m going to laugh…so you don’t see me cry…and even if it kills…I’m going to smile.”

I think seeing Vic trying to remain cheerful and to smile through her pain is almost harder than seeing the raw pain on her face.  I know Vic so well.  When her voice becomes shrill and loud she is suffering bravely. 

 ImageThe sad thing is that Vic thinks we cannot see through her act.  She especially tries this act with the boys.  She will try and joke (not that she ever had a great sense of humor) and tell long winded stories.  Long winded because I think she somehow loses the thread of the story along the road and fills in the blanks with words. 

 Even as a baby Vic used to babble.  She used to lie in her cot and ooch and gooch…She was such a happy little thing.  Laughed from her stomach.  When she turned ten she started experimenting with her sense of humor…It was quite painful.  She could never get the punch line right.  At 37 she still can’t get it right.

 With 80 operations under her belt Vic developed almost a manic fear for the theatre.  She got to know the theatre team very well.  Her anaesthetist, Richard Spark, is one of the greatest human beings I have ever met.  Brendon Bebington,  her surgeon, would hold her hand whilst Richard administered the anaesthetic. 

Vic always insisted on telling them a joke in theatre.  We would make her practice the joke for days!! Even in the holding area of the theatre we would make her repeat the joke…  We would laugh and clown about to try and take her mind off her fear.  Fear that she would not survive another operation and fear of the pain if she did… As they wheeled her into the theatre the tears would come… my tears.  I never cry in front of Vic. 

I wish I had written down the original joke and what Vic ended up telling…

 It is part of the burden of having a terminally ill child.  You fear tears because it may lead to breakdown. 

 Last night Jon-Daniel and Jared managed to have them mother shrieking with laughter.  I don’t know when last I heard them laugh like that. It was amazing.  For a short while the heavy cloud that hangs over our home lifted…

 Today is a very difficult day for Vic.  The cold is in her bones.  Pain is dominating her mind and life again! My brave child is battling.  Maybe tomorrow will be a better day.

Tips for dealing with people in pain 17.7.2012


Tips for dealing with people in pain 17.7.2012.

Tips for dealing with people in pain 17.7.2012


“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”  Leo Buscaglia

I am disgustingly healthy!  I do not get headaches, toe-aches, tummy aches, ear aches or any aches or pains.  Every five years or so I get the flu and am totally unable to deal with the discomfort or pain of flu…I will stay in bed and when I hear Danie walking up the stairs to our room I will actually start groaning.  It is involuntary.  I am a ninny.  My family joke with my non-existant pain threshold.  Yet I see the doctor once a year for an annual check-up as I did last week.

Liver, lungs, kidneys perfect according to my blood tests.  Slightly elevated cholesterol count.  Doctor says I am in near perfect health.  So how do I understand my child’s pain and discomfort?  I don’t!  If you were born blind how could you ever understand or appreciate color?

There is a very brave young lady called Katie Mitchell, who suffers from Marfan’s Syndrome.  http://connectivetissuedisorders.wordpress.com  Katie gives me an insight into pain… She articulates her feelings beautifully.  Katie lives, breathes and understands pain… Katie has become my window into Vic’s painful journey…Katie re-posted a blog on pain and I found it so enlightening.  I will actually print the document and discuss it with the family.

Katie writes in red and my comments are in black:

Tips for dealing with people in pain:

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Vic is always trying to go to breakfast with Angela, lunch with Mrs Cramp and coffee with Tracey.  Vic very seldom is able to stick to a commitment.  It fills her with remorse.  She desperately wants some normality in her life.  Some semblance of a social life.  Pain and ill-health prevent it!

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.  Oh this I truly relate to…Vic sitting in the sun and crashing later, Vic trying to participate in a family barbecue and spending a week in bed to recover… Every action has a painful consequence!  As a family we dread Vic’s brave (but stupid as far as we are concerned) attempts of participating in life.  As a family we become angry, frustrated and scared when Vic tries to “live”!

3.  Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.  I never realized or appreciated this aspect of pain.  I often thought to myself Vic must be doped up, disinterested… As a family we were not aware of this aspect of pain.  Vic at times seems totally disinterested in the boys, the family, in life…

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.  Vic battles with too much movement or noise.  She becomes very irritated.

 5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.  Absolutely!!  If Vic wants something she wants it now! 

 6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.  Sometimes I am too scared to ask.  Some day’s I say “Oh, you are looking so great today” and Vic will reply “Oh good…” and I know that she is thinking “Tell my body!  I am feeling like death”

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.  Tonight Vic could not rub the hand cream into her little hands.  She could not pull a brush through her hair…

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.  I think Vic is past this stage.  Her pain is debilitating relentless and never-ending!

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down).  We are past the visiting stage.

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.  Every small action elicits a “Thank you Mommy”  Reuben actually remarked that in the past Vic took everything that I did for her for granted.  At this stage of her life Vic drives me absolutely mad with all the “Thank-You’s”

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.  Vic’s pain is well-defined but at times she has referred pain.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.  We do not understand pain.  I never have pain.  I cannot imagine not being able to walk, run, work, function, drive, live due to debilitating pain.  I groan from flu-pain…I don’t know how it feels to have a frozen abdomen, fractured vertebrae, migraines from skeletal collapse, chronic and unrelenting tissue pain…. There are times that I think surely it cannot be that bad?  I don’t understand Vic screaming with pain but I KNOW her pain is real!!!

Author Unknown” http://connectivetissuedisorders.wordpress.com/2011/05/20/tips-for-dealing-with-people-in-pain/

 In addition to the above I would like to add some of my own observations…

13.  Pain makes people emotionally over-sensitive.  Vic often misinterprets what we say.  She takes things very personally!  She is almost jealous of the boys and my relationship.  She feels excluded from so many aspects of our lives.  Last week Vic said “You are the fun-Oumie.  I don’t make my boys laugh”… She is very sensitive as to who the boys ask permission to do things or go places…   It is okay because she is scared of losing everything that is precious and dear to her.

14.  Pain makes people selfish.  This is a harsh statement.  When your body is engulfed in pain it must be very difficult to see reason and to wait.  It must be difficult not to lash out at the world.  To not stop and think of the effect that your illness has on your family and friends.

15.  Chronic pain and depression are closely linked. Chronic pain almost always leads to depression:  Why?  Just imagine a life consisting of dreadful, mind-blowing, unrelenting pain?  Imagine not having anything to look forward to…  We try to set little goals for Vic.

16.  Fatigue is a definite factor.

23.2.2012

Whether it is the pain medication or the emotional strain of coping with the pain, Vic is chronically and permanently tired.   We leave her to sleep.  We are far happier seeing her in bed than seeing her battle to walk, sit or participate…It stresses us that she gets up when she is so tired.  Vic falls asleep in a chair, the bath, the car, on her feet… We are at loggerheads with Vic in this regard… We want what is best for her…

17.  Addiction:-  “Patients often fear addiction. Patients with chronic pain do not and cannot get addicted to morphine. This is proved clinically by seeing patients whose pain is abolished (with a nerve block, for example) when even high doses of morphine used for several months can be stopped immediately with no withdrawal effects. Patients who are terminally ill still often fear that they may become addicted to morphine. They and their families can be reassured. This cannot happen when morphine is correctly used to control their pain. http://www.hospiceworld.org/book/morphine.htm“

The amount of medication that Vic takes is a source of great embarrassment to her.  Her biggest fear is that people will think of her as a “drug addict”.  This often prevents her from taking adequate medication. Do not even jokingly call someone who is chronically ill a drug addict…You have no idea what you are talking about!   Quite frankly I don’t care whether Vic is an addict or not…as long as she has some quality of breathing or life as she now knows it.

I wish I could research exotic vacation spots rather than “Tip’s for dealing with people with pain”  But this is part of our journey…