Tag: morphine

“How to Die In Oregon”


http://artfulintel.blogspot.com/2011/10/viff-2011-how-to-die-in-oregon.html

I just finished watching a program called “How to Die in Oregon“.  I am in total awe of the terminally ill people who make the decision to die with dignity.  People often say that it is a coward who commits suicide.  I don’t agree.  I think people must be so brave to do it!!

There is however a huge difference between suicide, assisted suicide and euthanasia.

From Wikipedia, the free encyclopaedia

Assisted suicide is the common term for actions by which an individual helps another person voluntarily bring about his or her own death. “Assistance” may mean providing one with the means (drugs or equipment) to end one’s own life, but may extend to other actions. It differs to euthanasia where another person ends the life. The current waves of global public debate have been ongoing for decades, centering on legal, religious, and moral conceptions of “suicide” and a personal “right to death“. Legally speaking, the practice may be legal, illegal, or undecided depending on the culture or jurisdiction

Suicide

From Wikipedia, the free encyclopaedia

For other uses, see Suicide (disambiguation).

Suicide (Latin suicidium, from sui caedere, “to kill oneself”) is the act of intentionally causing one’s own death. Suicide is often committed out of despair, the cause of which can be attributed to a mental disorder such as depression, bipolar disorder,schizophrenia, autism spectrum disorders, alcoholism, or drug abuse.[1] Stress factors such as financial difficulties or troubles with interpersonal often play a significant role.[2]

The TV documentary,  “How to Die in Oregon” is the tender and poignant story of Cody Curtis, a 54 year old, dignified, lady, who is diagnosed with terminal liver cancer.  Cody, early in her final journey decides that pain strips one from the ability to make rational decisions.  She decides that she will not suffer the indignity of living with loss of control of  her bodily functions.  She desires a “tidy death”.  Her journey takes her way past her “expiry date” and she muses  “People are waiting for me to die.  I do not understand why I am feeling so good”.

Her decline into intolerable pain and discomfort is sudden.  “Compassion and Choices” sends in volunteers to counsel and assist with the final act of assisted suicide.  Cody’s final journey is gentle, beautiful and “easy”.

Every time I say those terrible words “Vic is better” it is as if I place a curse on my poor child.  Poor Vic did not have a good day today.  Isn’t it amazing that 400mg of Morphine does not help for a headache!  It actually takes something like Grandpa’s or a Migraine Kit to help….

Vic and I sat chatting tonight.  She too had watched “How to Die in Oregon” and wanted to know how I would feel if she ever took a similar decision.  She cried and said that she is so sad and lonely.  She feels that the boys no longer trust her to “mother” them.

It is not the case.  What the boys have however started doing is setting her free….

How would I feel?  I would be devastated if Vic ever passed before I do.  I would miss her every second of my remaining life.  I would respect her wishes.   I would honor her memory and heart wrenching decision.

Nobody can begin to comprehend the pain that Vic suffers.  Nobody can comprehend that she drifts from one pain filled day to the next.  If she lived an extra month or two months it would be another month or two months of pain.  That is a lot of pain.

I know that this post will elicit a lot of condemnation and criticism.  When you have walked just ONE mile in our moccasins you may speak….

LEFT WANTING

Wanting

A place to rest

Seeking

A hand to hold

Needing

Quiet inside my head

Longing

For friendly smiles

Dreaming

Of peacefulness

Thinking

Of futures untold

Wanting

A place to rest

http://hastywords.wordpress.com/2012/08/20/left-wanting/#respond

Vic is going to Italy


I sometimes think Vic will live forever.

Vic has been doing so well. Ever since the arm surgery she has coped well with the arm and the pain. The Jurnista is truly a miracle drug!

On Thursday Vic went out for coffee. She drove her own little car… it was less than 2 kilometers but she drove! She was exhausted when she got home but she did not “crash”! She fractured another vertebrae on the 12th of August (http://wp.me/p2rPrS-bA ) but she is coping with the pain! She handled an emotional crisis well on Saturday and today she dished up her own lunch! It is remarkable that she is doing so well. Two months ago I was at my wits end. Vic was totally reliant upon me for everything! Due to the Jurnmista she has started taking back her life… Slowly but surely!

We have started planning our December vacation. Danie and I will take the boys and Henk to Germany for a two week vacation. Vic want’s to spend a week on her own and I want her to go to a Spa for the 2nd week… In the European Spring Vic and I are going to Italy!!!!

Life is great!

 

Cannabis and Pain Control 14.8.2012


http://citydesk.freedomblogging.com/files/2011/04/bud.jpg

Today was a terrible day.  The pain Clinic was crazy!  I have never seen so many people waiting to see the Professor.

When you are sitting in a queue for hours with people you meet every 28 days, you get to know the fellow patients.  But today there were two new faces.  An attractive young woman and her tired looking mother.  They appeared to not be very cultured or refined people.  The young woman was the sister of a patient who, like Vic, is too ill to come to the Pain Clinic.  His sister (S) and mother (M) are his proxy’s.

S became very agitated because she was told – “no appointment,  no consultation, no prescription”.  She actually used some choice language!  She kept saying “It is not for me.  I actually don’t care….”

She however bullied the nurse into agreeing to allow the unscheduled appointment.  But it was a long wait and S, I suspect, is a little ADD.  She was babbling about her brother and his pain and the sacrifices that the family had made after the brother’s motorbike accident.  At one stage of the monologue she said “Sometimes I just think I must give him some poison….”

Holy Moses!! It flashed through my mind “What type of person is this?”….

I was intrigued by the personality so I started chatting to her.  All it took was one or two questions and a flood of emotions and words poured out of them.  Sitting there I realized that I blog and that is what she was doing… S was blogging…..verbally.

She started telling their sad story.  Brother had been involved in a motorbike accident and spent weeks in ICU, ventilated and suffering some brain damage, severe nerve damage and lots of fractures.  He spent many months in hospital and gangrene developed in his leg.  His leg was amputated but the gangrene spread and this lead to 3 further amputations!  The mother said if she had known how he was going to suffer she would have prayed for him to die.

A small percentage of amputees suffer from phantom pain.  “Although the limb is no longer there, the nerve endings at the site of the amputation continue to send pain signals to the brain that make the brain think the limb is still there. Sometimes, the brain memory of pain is retained and is interpreted as pain regardless of signals from injured nerves.” http://www.webmd.com/pain-management/guide/phantom-limb-pain.  Brother apparently squarely falls into this category.

Sister loudly proclaimed, for the world to hear, that she sometimes considers giving her brother  enough morphine to end his misery.  She believes that he is hanging onto life until his insurance claim pays out so he has something to leave his children…

The mother is taking care of her son.  It is obvious that her life has come to an end.  I see the despair in her eyes when she says “He doesn’t sleep.  Yesterday he threw his crutch at me…..”

Sister then whispers, in a conspiratorial manner, “We buy him lots of extra medication”

I asked them whether they had ever considered giving him cannabis.  “Oh yes” they said.  “We made him tea and he hated it!”

“It is better if he smokes it” I said

I looked around and saw shock and surprise register on everyone’s faces.  I could see them think “How can this (sweet) middle aged, conservative, Afrikaans speaking lady even know about cannabis?”

Well, I do know about cannabis.  I have researched every single aspect and possible pain management method and product and my research includes the effect of cannabis on pain relief.

  • Marijuana helped reduce pain in people suffering spinal cord injury and other conditions. In this study, 38 patients smoked either high-dose or low-dose marijuana; 32 finished all three sessions. Both doses reduced neuropathic pain from different causes. Results appear in the Journal of Pain.
  • Medium doses of marijuana can reduce pain perception, another study found. Fifteen healthy volunteers smoked a low, medium, or high dose of marijuana to see if it could counteract the pain produced by an injection of capsaicin, the ”hot” ingredient in chili peppers. The higher the dose, the greater the pain relief. The study was published in Anesthesiology. http://www.webmd.com/pain-management/news/20100218/medical-marijuana-has-merit-research-shows

A couple of years ago I bought some cannabis and put it in brownies for Vic to eat.  She hated it.  I gave her some to smoke.  She hated the effect that it had on her.  I know it is illegal.  Personally I have never smoked or eaten the stuff so I do not know what effect it has on people.  I have read, in 100’s of publications that it reduces the pain perception and can stop the devastation of Alzheimer’s.

I will stop at absolutely nothing to relieve my childs pain.

I then had a light-bulb moment – I realized that the mother and daughter were no different to me.  They know the heart wrenching despair of caring for a loved one who has indescribable pain.  They too pray for their loved one to find peace and release in death.  They will also do anything to relieve the pain of their loved one.

I just have an extra layer of veneer

Skin to Bone 13.8.2012


This morning, when I checked the BBM status’ of my loved ones,  Jared had the lyrics to Linkin Park‘s “Skin to Bone” as his status.  I did not realize that it was a song’s lyrics and wondered about the weird status.  Normally his status says something like “I love my beautiful Jelly Tot” or “Kirsten, my one and only”

After school, while we were waiting for Jon-Daniel to finish cricket practice, he asked me whether I had heard the song, “Skin to Bone”, before.  Obviously I hadn’t but even if I had,  I doubt if I would have been able to distinguish the words from the loud musical arrangement….I am not the greatest Linkin Park fan in the world!

He spoke about the lyrics and I asked him whether the song reminded him of his Mom.  He said “I suppose so.  When I first heard the words I thought of Mom”

Back home I downloaded the lyrics.

Linkin Park — Skin To Bone
Skin to bone, steel to rust
Ash to ashes dust to dust
Let tomorrow have it’s way
With the promises we made
Skin to Bone, steel to rust.
 
Ash to ashes, dust to dust
Your deception, my disgust
When your name is finally drawn,
I’ll be happy that you’re gone
Ash to ashes, dust to dust.
 
Chorus:
(Aaah) Ash to ashes, dust to dust
(Aaah) Skin to bone and steel to rust
 
Right to left, left to right
Night to day and day to night
As the starlight fades to grey,
I’ll be marching far away
Right to left and left to right
 
Chorus:
(Aaah) Ash to ashes, dust to dust
(Aaah) Skin to bone and steel to rust
 
Let tomorrow have it’s way
With the promises betrayed
Skin to bone and steel to rust (x3)
Lyricsfreak.com © 2009

 “Skin to bone“, represents her frail body to him.  “Steel to steel” her steely hold on life!  Her refusal to give up.  “Ashes to ash, dust to dust”….. the inevitable

 “The promises we made” I would imagine the promise that he envisages is the unspoken promise that a parent makes at the conception of the child….. to love and hold the child – until death do them part…  The promise is not supposed to end in his early teens.

“Your deception, my disgust…..”  relates to his feelings of betrayal.  In a way he perceives his Mom’s ill health as a betrayal.  His Mom is not supposed to be this ill and suffer the way she does.  Vic was supposed to be a healthy Mom.  Their lives were supposed to be “normal.”  “My disgust” …. the despair of his life…..Anger for his mother’s suffering!  Disgust with the medical system failing her.  Anger for the OI gene.  He is unable to understand all the “why’s”.

 “When your name is finally drawn,
I’ll be happy that you’re gone
Ash to ashes, dust to dust.”

 Jared absolutely adores his mother.  He often says “Oumie, I don’t want Mommy to die.” I have however seen the sheer helplessness in his eyes when he sees her suffering the way she does.  I know that Jared too longs for his mother to be at peace, without pain – Her spirit freed from her frail, pain wretched body.  So my precious grandson joins the song and broken hearted sings along with Linkin Park

 “I’ll be happy that you’re gone.  Ash to ashes, dust to dust….”

Mommy I broke my Back!!


Vic as a Young Mommy

Mommy I broke my Back!!.

Dummy’s Guide for the Parents of a Terminally ill Child


Dummy’s Guide for the Parents of a Terminally ill Child.

Pain medication – Dependence or Addiction?


Pain medication – Dependence or Addiction?.. 

 

Pain medication – Dependence or Addiction?


28 days pain medication

What are the different types of pain medication options?

Different strokes for different folk… What pain medication works for one type of pain does not work for a different type of pain.  Simple example: – Morphine does not relieve toothache or headaches….. It relieves bone pain.

Medicines can often help control chronic pain. Many different drugs, both prescription and non-prescription, are used to treat chronic pain. All these medicines can cause side effects and should be taken exactly as they are prescribed. In some cases, it may take several weeks before medicines work to reduce pain. To avoid dangerous drug interactions, tell your doctor all the medicines you are taking (including herbal and other complementary medicines).

Medication Choices

You will likely be given medicines that cause the fewest side effects first (such as acetaminophen) to treat chronic pain. The dose will be increased or the medicines will be changed as needed. Medicines used to treat chronic pain include the following:

Recommended Related to Pain Management

Other therapies that may be used to treat chronic pain include:

  • Nerve block injections. An anesthetic is injected into the affected nerve to relieve pain. The anesthetic may relieve pain for several days, but the pain often returns. Although nerve blocks do not normally cure chronic pain, they may allow you to begin physical therapy and improve your range of motion.
  • Epidural steroid injections (injecting steroids around the spine). Although these injections have been used for many years and may provide relief for low back or neck pain caused by disc disease or pinched nerves, they may not work for everyone.
  • Trigger point injections. These may relieve pain by injecting a local anesthetic into trigger points (or specific tender areas) linked to chronic fascial pain or fibromyalgia. These injections do not relieve chronic pain in everyone.http://www.webmd.com/pain-management/tc/chronic-pain-medications

Vic’s pain medication as at 4.8.2012 (Transcribed from medication received from Pain Clinic

TABLET NO OF TABLETS PER DAY
TRAMADOL 50MG 4 3 TIMES PER DAY
AUSTRELL PARACETAMOL 500MG 2 3 TIMES PER DAY
STILPAYNE 2 3 TIMES PER DAY
CYMBALTA 60 2 1 TIMES PER DAY
NEURONTIN 100MG 6 3 TIMES PER DAY
SRM RHOTARD 400MG (MORPHINE)   2 TIMES PER DAY
ELTROXIN .1MG 1 IN MORNING
BACTRIM 1 3 X PER DAY
LOSEC 20MG 1 IN MORNING
STEMITIL 5MG 1 2 TIMES PER DAY
MORPHINE SYRUP 25MG/5ML AS NEEDED
JURNISTA 4MG 1 1 TIMES PER DAY
PANAFORTE 1 2 TIMES PER DAY
DEGRONOL 2 2 TIMES PER DAY

This is scary.  The amount of opioids Vic takes would certainly kill most people.  Is Vic an addict?  Certainly not!!

Opioids work by mimicking the body’s natural painkillers known as endorphins. They control pain by blocking pain messages to the brain. Because morphine is an opioid, some people worry about becoming addicted. When you take an opioid to control pain, it is unlikely that you will become addicted. The body uses the drug to control pain, not to give you a ‘high’ http://cancerhelp.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/morphine

I read a heart rendering account of chronic pain and the fear of being treated as an addict written by Tracy Rydzy, a Licensed Social Worker.  http://ohwhatapain.wordpress.com/being-treated-like-an-addict/  Tracy writes a heart rendering blog on chronic pain and prejudge that she faces every day.  Tracy writes: “I may be on medication, but I am intelligent and I know what is going on.  Please understand that I didn’t choose this for myself.  I don’t want these damn pills, but I have no other choice right now as I have exhausted my other options for pain relief.  Don’t hold my condition against me.  I understand the pen is mightier than the sword, so I can’t even ask to change dosages, I can’t request anything different, I certainly can’t be rude in any way (regardless of how you treat me) and I can’t question you because you hold my ability to move and get out of bed in your little prescription pad.”

We are so fortunate that we have access to The Pain Clinic run by very sympathetic professionals.  We do not have a problem getting a prescription for the medication.  Our problem lies in the fact that from time to time the pharmacy of the Helen Joseph Clinic runs out of Morphine both in tablet or syrup form.  Sometimes we are able to get a private script from the Pain Clinic and other times I have to go back the next day, sit in a queue again, get the script and then get it filled privately.  Try and get 4.2 litres of morphine syrup from a pharmacy….  Sometimes I am busy and then find it easier to pay a doctor for an appointment to get a script.  We may get a script for 1 litre….

Fortunately Vic’s eldest sister is a pharmacist and we are known to the staff at that particular pharmacy.  The times we have tried to use other pharmacies (because they do not have morphine in stock) we are treated with suspicion.

“Many people confuse physical dependence, which is the occurrence of withdrawal when the drug is stopped, with addiction. Withdrawal is a physical phenomenon that means that the body has adapted to the drug in such a way that a “rebound” occurs when the drug is suddenly stopped. The kind of symptoms that occur include rapid pulse, sweating, nausea and vomiting, diarrhoea, runny nose, “gooseflesh,” and anxiety. All people who take opioids for a period of time can potentially have this withdrawal syndrome if the drug is stopped or the dose is suddenly lowered. This is not a problem as long as it is prevented by avoiding sudden reductions in the dose.

Physical dependence is entirely different from addiction. Addiction is defined by a loss of control over the drug, compulsive use of the drug, and continued use of the drug even if it is harming the person or others. People who become addicted often deny that they have a problem, even as they desperately try to maintain the supply of the drug.

Addiction is a “bio psychosocial” disease. This means that most people who become addicted to drugs are probably predisposed (it is in the genes) but only develop the problem if they have access to the drug and take it at a time and in a way that leaves them vulnerable. A very large experience in the treatment of patients with chronic pain indicates that the risk of addiction among people with no prior history of substance abuse who are given an opioid for pain is very low. The history of substance abuse doesn’t mean that a patient should never get an opioid for pain, but does suggest that the doctor must be very cautious when prescribing and monitoring this therapy.

People with chronic pain should understand the difference between physical dependence and addiction. Unreasonable fears about addiction should not be the reason that doctors refuse this therapy or patients refuse to take it.

Tolerance to opioid drugs occurs but is seldom a clinical problem. Tolerance means that taking the drug changes the body in such a way that the drug loses its effect over time. If the effect that is lost is a side effect, like sleepiness, tolerance is a good thing. If the effect is pain relief, tolerance is a problem. Fortunately, a very large experience indicates that most patients can reach a favorable balance between pain relief and side effects then stabilize at this dose for a long period of time. If doses need to be increased because pain returns, it is more commonly due to worsening of the painful disease than it is to tolerance. “

Vic is “embarrassed” the amount of medication she needs to take to control her pain.  She is oversensitive to the point of being paranoid about being called an addict.

Is my child an addict?  Hell no!!  Does it worry me that she needs increasing amounts of medication to handle the pain associated with the deterioration of her little body?  Hell no!!  Whatever it takes for one pain-free moment in her little life!  Tracy to you and all the other chronic pain sufferers out there – I wish you all a sympathetic doctor, nurse and pharmacist!

5 Stages of Dying 2.8.2012


5 Stages of Dying.

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 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.

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.

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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