Another birthday…..


South African grandchildren
South African grandchildren

Yesterday I celebrated (another) birthday.

Late Saturday night Vic’s restlessness was indicative that she was determined to be the first to wish me.  At 11.30 pm she came through and said “another half hour….. I want to be the first to wish you Mommy.  I just want 30 minutes alone with you on your birthday…”

“No problem angel.  I’ll switch the kettle on.” I said

“I will be back in a minute” she said

I made coffee and checked some e-mails.  At 12:00pm I expected her to come through singing “Happy Birthday” but no Vicky….

I went through to her room and the poor baby had fallen asleep on her bed…

Jon-Daniel came through and brought me a cup of tea on a tray, with a gift and card and a rose!  “Happy birthday Oumie” he said.

He had bought a book I have wanted to read for a while “The Elephant Whisperer” – It is an inspiring, true life drama of a herd of wild African elephants on an African game reserve. The herd is destined to be shot for dangerous behaviour when this special human being, Anthony, intervenes to try to save their lives.  I was so thrilled that he remembered.

Just before 01:00 am Vic shuffled into my TV lounge.

“Oh Mommy, I am so sorry I fell asleep.  I thought I would just close my eyes for 5 minutes whilst you make the coffee…”

We sat and chatted for a while.  Vic shared her good wishes with me and we just sat and spoke.  We spoke about our very special mother-daughter relationship.  We spoke about years gone by and how blessed we are to have this time together. (I cannot imagine Vic married and living in someone else’s home on her final journey.)

The girls, Esther and Lani, arrived at 10:00am with gifts, a cooked meal, dessert and cake.  The grandchildren set the table…  My sister Lorraine and dear friend Judy arrived bearing armloads of gifts.  The grandchildren had written me letters and cards – it was so special.  Vic bravely cooked a pot of rice and had lunch with the family.  All the grandchildren swam and played tug-a-war!   We laughed and joked.

It was a perfect day.

Esther and Lani planned the day to start early whilst Vic is at her best.  As the day progresses so her energy levels decrease.  Immediately after lunch Vic went to bed.  She was in so much pain and absolutely exhausted.

All the grandchildren wanted to stay.

Sunday evening we Skyped my son and his family in the UK.  Vic and Danie spoke.  Vic and Danie Jnr have a special bond.

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Twenty two years ago I married Danie Sr and his four children; Esther 23, Lani 18, Liza 16 and Danie 11…  Danie married me and one, sick, very protected, spoilt brat, Vicky, aged 16.  Vic and Danie Jnr were the two kids who lived with us.  Vic embraced her new family.  (I was petrified of the children!)

Vic’s siblings have been amazing over the years.  I could never have coped as well as I do if it was not for their love, support and encouragement.  The siblings are fiercely protective of their little sister.

Vic and Danie Jnr spoke for at least 10 minutes last night.  It was a sad conversation between a brother and his older, little sister.

“I miss you so much Little Brother” Vic said

“I miss you too Vic.  How are you feeling?”  Jnr asked

“I am battling Boetie (Little Brother) Vic said

“We are coming to visit in April then I will see you Vic”

“I don’t know if I am going to make it to April” Vic said

“Just hang in there Vic.  It is not that long to April…” Jnr consoled her

“I know but I am tired.  I am just missing you” Vic cried

“I will fly over for a weekend.  I want to see you again” Danie promised

Vic was so tired last night.  Her little body cannot handle parties anymore.  She tries so hard.  This weekend we will have Jared’s 16th birthday.  It is only his birthday on the 26th but most of his friends are away for Christmas so we have his friend party an early in December.

I know this will more than likely be another last for Vic.

Esther, Vic and Lani
Esther, Vic and Lani

 

 

 

 

 

 

 

 

 

The night was not over…


“You ain’t heavy, you are my Mother”

Early this morning I posted “My child is in a pain-free sleep.  I will now try to sleep.  “Tomorrow may be a rough dayhttps://tersiaburger.com/2012/12/07/tomorrow-may-be-a-rough-day/  not realising that the night was not over yet.

My poor child had a horrible night.  The pain was under control, but her arm still throbbed, and she was restless.  I was busy with some Christmas gifts.  I tried to go to sleep, but gave it up as a bad job.  So I wrote a post.  At 2am this morning I had just “published” when Vic rang the intercom.

The intercom is her 911

I ran down the passage knowing that my poor child had vomited again.  The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets.  The food had not digested at all.  She was shivering and crying.

I cleaned up whilst Vic showered.

“I am sorry Mommy.  I am so sorry Mommy”… Vic sobbed.

“I can’t do this anymore Mommy.  I don’t want to live like this anymore….”

I eventually got into bed at 5am.  Three hours sleep used to be enough sleep when I was younger.  I think I am getting old.  I need more than 3 hours.  Maybe it is time to look at a night nurse…..

Hospice called early this morning.  The antibiotics have been changed to IM injections.  We cannot put up an IV drip.  Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained.  Vic refused.  “No more hospitals.  Mommy you promised…”

Monday morning Dr Sue will come to the house and do the procedure here.

Yesterday I spoke with a wonderful young man, Marchelle.  I was privileged to have worked with Marchelle worked for a couple of years.  Unfortunately we lost a large contract and had to go our separate ways.

Marchelle has a pure heart.  He is selfless and one of the very few people I trust with every fibre of my being.  Marchelle has never let me down.

Marchelle told me he is following my blog.  He asked me whether I thought the situation is truly as bad as Hospice say it is.  I said I did.

He asked what is different this time? You have been told so many times that Vic was dying, and then she bounces back…

I started giving him the facts; Vic is in renal and hepatic failure… This time she cannot bounce back.  Organ failure is organ failure…. Talking to him I thought “Marchelle is right!  Why am I giving up this time?  I have NEVER given up on my child, and I will not give up now.” 

I walked into Vic’s room and stood in the door looking at my beautiful little girl sleeping.  I am so tired that I am allowing the negativity of the situation to get to me.  It was however only at 4:00 am that the reality of Vic’s situation re-settled around my heart like a lead jacket – I know my child has had enough.

Marchelle said he prays for us every day, and I believe him.

This morning Vic took her precious boys to pick up their report cards.  Both Danie and I said we would take them.  Vic very politely refused.  She wanted to take her boys.  She wanted to be first to see their marks.  Maybe for the last time…

She was absolutely delighted with their marks.  The boys had worked hard and deserve every mark they received.  I wonder whether the boys will remember in the years to come that their Mommy got out of her sick- bed to go with them to collect their 2012 report cards.

We are so proud of them.  They are brave kids.

On Sunday we will celebrate my birthday.  On the 24th we will have our first Christmas dinner with Lani, Tom and all their kids.  Simone still believes in Santa!  On the 25th we will go to Church.  On the 26th we will celebrate Jared’s birthday.  On the 27th we will start planning our New Year celebrations.

Forward planning is “The power of positive thinking”…

Vic and her baby Jon-Daniel..
Vic and her baby Jon-Daniel..

Tomorrow may be a rough day


Alberton-20121206-01427

 

Vic’s arm is very painful.  The antibiotics have not started working yet.  Dr Sue will come and see her tomorrow morning, and we will then decide whether it warrants hospitalization.  Obviously Vic need intravenous antibiotics and her tissue is too poor….

Tonight Vic had one of her worst vomiting spells yet.  It happened after 02:00am and her dinner of 7.30pm had not digested yet.  It is obvious that the oral antibiotics are not being absorbed.

Vic was very tired today, but insisted on going with Jon-Daniel to the orthodontist.  In years to come will he remember that his mommy was with him when he heard his orthodontic treatment ends on the 1st of February at 09:15am?

My sister phoned tonight.  She categorically told me that I have no business injecting Vic.  Nurses go to College for 4 or 5 years so they know what they are doing…. I did not even bother to explain that it is the Hospice site that is bad… My two sites are only in the beginning stages of going septic…  I wonder whether she remembered that Vic has sepsis in her spine and abdomen…

The pethidine has kicked in.  My child is in a pain-free sleep.  I will now try to sleep.  Tomorrow may be a rough day.

 

Vic is sleeping peacefully


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It is 12:42am and Vic is sleeping peacefully.  She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!

Vic’s legs are growing very weak.  The cellulitis on her arm has worsened despite the antibiotics.  It is now oozing pus.  Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics.  She had a violent vomiting spell just after she took her antibiotic tablets tonight.  It is very difficult for her to keep tablets and food down.  Despite the six-hourly anti-nausea injections she has….  And of course there is the problem of the poor absorption.

“I can’t do this anymore…” Vic mumbled to herself tonight after the vomiting episode.

The situation is getting to Danie.  My poor husband tries so hard to be strong and make life easier for the rest of us.  Jared and Jon-Daniel are deeply conscious of the situation.

“Life will be horrible without Mommy” Jared said today.  “She takes so much of our time, and such a big space in our lives….  Mommy has such a presence Oumie…”

We spoke about his little brother and Jon-Daniel’s inability and aversion to discuss his emotions.

I realised that the boys are already starting to dread the void Vic’s passing will leave.  Anticipatory grief is a killer.  It is unfair that these two beautiful boys have to experience so much pain and hardship in their young lives.  They should be riding their bikes and getting up to mischief.  Now they are stressed out because their mother is dying.

I am too tired to write anything that makes sense.  I just need to record today.  I never want to forget today.

I want to remember how I felt when I lay with my child this afternoon.  I want to remember her tears when she spoke to her sister.  I want to remember the smell of her vomit.  Maybe it will make it easier to accept later on.

We need a miracle again….


Daniel and Vic 29-01-07

Sr Siza examined Vic today.  She phoned Dr Sue who will be in tomorrow morning.  She also brought a script with for Dalacin antibiotics.  The cellulitis has spread to all three the subcutaneous sites.

Siza expressed her concern at Vic’s decline…

Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”

That statement really shook me.  Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions…  I have never really considered living without my child.

Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters.   We are hoping that they will “host” our Hospice at their premises.

The CEO knows Vicky and the boys.  Jared was confirmed in his church earlier this year.

I shared with them how difficult it was to get a terminally ill person into a Hospice Program and that 95% of the dying population die in pain.  Vernon (CEO) quietly listened to us and explained how difficult fundraising is.  Christians are tight with their money…

Vernon then shared the following with us.

“In 2007 I was driving home from a meeting when I felt this urgent need to see Vicky.  I knew she was in hospital as she was on the prayer list.  I drove to the Donald Gordon (Hospital) and was directed to the ICU.  The nurses welcomed me although it was way past visiting time.”

“Pray for her.  We are switching the machines off tomorrow morning…” they said.

I stood next to her bed, raised my arms and prayed that God would spare Vicky for her little boys.  I stood next to a dead person that night.  Two days later I heard that Vicky did not die when the machines were turned off…”

I just stared at him.  I was speechless…  I had no idea!   It was the first time I had ever heard the story!

In June 2007 Vic had developed ARDS (Acute Respiratory Distress Syndrome) after a series of operations trying to close up an abdominal fistula.  Her body was excreting up to 7 litres of faecal matter a day and she had every superbug the ICU could offer.  On the Tuesday Vic went into respiratory failure and was ventilated.  I was talking to her when the doctors rushed us out of ICU and put her onto the ventilator.  By the Thursday her kidneys and liver had started shutting down.

ARDS is a severe lung syndrome (not a disease) caused by a variety of direct and indirect issues. It is characterized by inflammation of the lung parenchyma leading to impaired gas exchange with concomitant systemic release of inflammatory mediators causing inflammation, hypoxemia and frequently resulting in multiple organ failure. This condition is often fatal, usually requiring mechanical and admission to an intensive care unit.   http://en.wikipedia.org/wiki/Acute_respiratory_distress_syndrome

My BFF, Gillian drove 350 kilometres to be with me.  On the Thursday there was absolutely no sign that Vic could or would recover.  Vic had a DNR and a living will that she had provided the hospital.

That evening one of the ICU doctors, Liam, hugged me and said “Mommy, Vic is tired.  You must let her go…”

Gill, Leeann (Vic’s friend) and I went home after visiting hour to talk to the boys.  They were already in bed when we arrived home.  We sat with them

Guys, you know how ill Mommy has been….Mommy’s lungs are not able to work on their own.  Mommy’s kidneys and liver is also not working that well anymore.  The doctors feel that Mommy will not be able to breathe without the machines and that Mommy has suffered too much.  They think it will be better for Mommy to be taken off the machines…”

Jared quietly started to cry.  Jon-Daniel was stoic.  Jared was 10 years old and Jon-Daniel 8 years old.

“What will happen with us Oumie” Jon-Daniel asked.

“Sweetie, Oumie and Oupie will ALWAYS be here for you.  This is your home.”

Jared cried himself to sleep.  Jon-Daniel just clung to me.  The three of us shared a bed that night.

The next morning early Gill, Lee and I set off to hospital.  When we arrived I said “I am not going into that hospital until I have prayed in the Chapel.”

The three of us prayed and it was with absolute certainty that I KNEW Vic would not die that day.

Family and friends drifted in and out of the waiting room the whole day.  My minister came and prayed for my child.  Everyone said goodbye.

That afternoon Danie and I were allowed to see Vic.  The “invasive” ventilator had been disconnected and she had a mask-like ventilator covering her face.  It was a grotesque sight.

Danie held her little hand and his tears dripped onto her arm.

Oh sweetie” he said, the sorrow and pain raw in his voice.

Vic opened her eyes and said “Daddy”….

Three days later Vic was discharged from ICU….. It was not her time.

Today I looked at her and fear struck at my heart.  My child is slowly slipping away.  Her little body is tired of the pain.  Her little organs are enlarged and diseased.  Her bones weak….

And the realisation hit home…. We need another miracle.

God please have mercy on my child.

What Will Matter – Michael Josephson


My beautiful baby girl
My beautiful baby girl

Ready or not, someday it will all come to an end.

There will be no more sunrises, no minutes, hours or days.
All things you collected, whether treasured or forgotten, will pass to someone else.
 
Your wealth, fame and temporal power will shrivel to irrelevance.
Your grudges, resentments, frustrations and jealousies will finally disappear.
So too your hopes, ambitions, plans, and to-do lists will expire.
 
The wins and losses that once seemed so important will fade away.
It won’t matter where you came from, or on what side of the tracks you lived, at the end.
 
It won’t matter whether you where beautiful or brilliant.
Even your gender and skin colour will be irrelevant.
 
So what will matter? How will the value of your days be measured?
 
What will matter is not what you bought, but what you built;
Not what you got, but how you gave.
 
What will matter is not your success, but your significance.
What will matter is not what you learned, but what you taught.
 
What will matter is every act of integrity, compassion, courage or sacrifice that enriched, empowered or encouraged others to emulate your example.
 
What will matter is not your competence, but your character.
What will matter is not how many people you knew, but how many will feel a lasting loss when you’re gone.
 
What will matter are not your memories, but the memories that live in those who loved you.
What will matter is how long you will be remembered, by whom and for what.
 
Living a life that matters doesn’t happen by accident.
It’s not a matter of circumstance but of choice.
 
Choose to live a life that matters.
What Will Matter – Michael Josephson
 

Dear Radio Station….


 

Photo Credit:http://www.mysandton.co.za/social/two-more-families-have-been-touched-christmas-wish-list

 

In the early hours of the morning I wrote a letter to a very popular radio station in Gauteng                                                                                                                                                                                                                                                                                                                                                                  (South Africa).  94.7 http://www.highveld.co.za/events/events/christmaswish2011/index.asp  94.7 have a Christmas Wish List.

Each year, the 94.7 Highveld team tries to make a few lives a little easier during the festive   season by finding sponsors to assist those who are in desperate need.

Listeners are asked to nominate the people in their lives who could use a break, and two of these are granted each morning for four weeks.  I decided to write a letter and ask for help for our Hospice project that will kick off on 1 January 2013 with limited resources.

I hope and pray Stepping Stone Hospice will be selected and that pharmaceutical companies will sponsor the pain medication for the indigent people.  Please hold thumbs with us that this will work!

                My name is Tersia.  My 38-year-old daughter is terminally ill. 

Vicky suffers from Osteogenesis Imperfecta, a brittle bone disease.  In people with Osteogenesis Imperfecta, one of the genes that tell the body how to make a specific protein does not function. This protein (type I collagen) is a major component of the connective tissues in bones. Type I collagen is also important in forming ligaments, teeth, and the white outer tissue of the eyeballs (sclera).

 As a result of the defective gene, not enough type I collagen is produced, or the collagen that is produced is of poor quality. In either case, the result is fragile bones that break easily.  Collagen in the body is what cement is in a building.  It keeps the tissue/bricks together!  Vicky has poor quality collagen.

 Vic has a very bad spine.  Her neurosurgeon decided to do experimental surgery in 2002.  “The Prodisc (Total Disc Replacement) is an implant designed to mimic the form and function of a healthy intervertebral lumbar disc. It is implanted during spinal arthroplasty after the diseased or damaged intervertebral disc has been removed. The goal of artificial disc replacement is to alleviate the pain caused by the damaged disc while preserving some or all of the natural motion of the lumbar spine. By preserving the natural motion, it is hoped that the adjacent levels of the spine will not be subject to additional stress as they are in traditional fusion surgery.”  http://www.spine-health.com/treatment/artificial-disc-replacement/fda-approves-prodisc-lumbar-artificial-disc;  

Vic had the Prodisc procedure on Wednesday morning, the 13th of February 2002.  The operation was scheduled to last “two hours and thirty-seven minutes”.   Six hours after Vic was pushed into theatre we were told that she is in recovery.  Vic would go to ICU for “pain control”.

She was pretty out of it the entire Wednesday and Thursday.  Friday Vic was conscious and in dreadful pain.  No amount of morphine brought her pain relief.  Her face and nose itched in a reaction to the morphine.  Vic was losing her mind with pain.

Early Friday morning I cornered the surgeon.  He said she is fine.  I kept badgering the ICU staff to increase her pain medication.  I pointed out that her heart rate was elevated and she was running a temperature.  Her breathing was shallow and fast.  If it was today I would have recognized the danger signs.

That evening I was too scared to leave.  My child was in trouble.  Just after 8pm the doctor came and spoke to me. He explained that Vicky’s tissue is extremely poor (surprise surprise!!) and that there was a small chance that her bowel may have been perforated.  The X-rays did not show up anything but my concern had “alarmed” him.

At 9.30 pm Vic was pushed into theatre again.  Eleven hours later she was rushed back to ICU.  Sunday the 17th of February Vic went back to theatre for a further 9 hour surgery.  She came out ventilated.

 She spent 22 days on the ventilator hovering between life and death.

 Doctor arrogance and negligence has led to 10 years of sheer undiluted hell and misery.  The Prodisc was never removed.  The Prodisc is systematically spreading sepsis to Vic’s intestines.  As a direct result of the blotched back surgery Vic has had 81 abdominal procedures over the past 10 years.  She now has a frozen abdomen, battles obstructions and fistula, sepsis and Addison’s disease.  The doctors have said they can do no more for her. 

 Vic is now under Hospice care.  She suffers terrible debilitating pain and often fractures vertebrae when vomiting… Vic’s organs have started shutting down.  She is in renal and hepatic failure. 

 Vic and I share a dream of starting a Hospice in Alberton.  Alberton does not have a Hospice and falls under Hospice Witwatersrand. It is far, and the townships i.e. Palmridge, Thokoza and Edenpark are not serviced at present.

 It is a sad fact that only 5% of South African’s are able to die a “good death”.  95% of the population will die in excruciating pain. 

 The World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (WHO 2002)

 We have registered a Non-Profit-Organisation and are in the planning stages of starting a Hospice in Alberton that will provide palliative home care to all residents in Alberton that need our help.  We have approached one of the caregiving associations in Alberton to see if they could provide us with space to operate from.  I have no doubt that we will have community buy-in if we are able to create palliative care awareness.  We aim to start operating as Stepping Stone Hospice & Care Services by February 2013

 Stepping Stone Hospice & Care Services Mission Statement

Adding life into days when days can no longer be added to life.

Stepping Stone Hospice & Care Services is a not-for-profit organization dedicated to providing comprehensive, compassionate services to patients and their loved ones during times of life-limiting illnesses.

Since dying is a part of the normal process of life, the focus of Stepping Stone Hospice & Care Services is to enable our patients to live as fully and comfortably as possible, to provide dignified palliative care, to assist patients’ loved ones in coping with end-of-life issues and the eventual death of the patient, and to improve care for all patients at the end of their lives by example and education.

Stepping Stone Hospice & Care Services’ goal is to provide physical, emotional, and spiritual comfort. Stepping Stone Hospice & Care Services’ exists in the hope and belief that through appropriate care, education and the promotion of a supportive community sensitive to the needs of the persons facing the end of life, patients and their loved ones may be able to obtain physical, mental, and spiritual preparation for the end of life, bereavement and renewal.

Stepping Stone Hospice & Care Services believe that Hospice care should be available to any and all persons with a life threatening illness for which there is no cure or for persons who elect not to attempt a cure, resulting in a limited life expectancy.

 We are hoping that Vic will live to spend another Christmas with her two boys and the family.  I pray that she lives long enough to see her dream come true.  Please help make her dream come true…

 We ask nothing for ourselves as a family.  We do however seek your kind consideration for assistance in any form that will enable us to provide palliative care to the 95% of dying community in Alberton. 

 We need equipment such as wheelchairs, subcutaneous drivers, oxygen measuring equipment, walkers etc. 

 If there is any way you are able to help us we would truly appreciate it! 

 No-one should be denied the right to die a “good death” 

 I am blogging Vic’s Final Journey. I blogged on palliative care in this post  https://tersiaburger.com/2012/09/17/pain-keeps-you-alive-2/ and about Vic’s compassionate nature https://tersiaburger.com/2012/11/14/a-night-out-of-hell/.  If you are in doubt about whether this is a worthy cause please read some of the blog.  I am not seeking publicity for my blog – just help!

 Thank you for the wonderful work you do in helping the community.

 A blessed Christmas to you all.

 Best regards

 Tersia M Burger

Morphine extends life!


Vic and I in healthier days

The downward pain spiral has already begun.  Vic is quite swollen and had a bad day.  This afternoon late she perked up and has only had one vomiting spell tonight.

As Sr Siza was examining her this afternoon and taking her vitals I remarked on the swelling.  “It’s the organs shutting down” she whispered….

“I am scared Siza.  I administer such massive dosages of medication to Vic… What if I kill her?” I asked over a cup of tea.

“Don’t worry my love.  You won’t.  There is no upper limit to the amount of morphine that Vicky can go on… As long as we titrate the dosages she will be fine.”

So I Googled Morphine+dosage+death and one of the first articles that came up (and I could understand) is “When Morphine Fails to Kill”  By GINA KOLATA

 Proponents of assisted suicide often argue that when a doctor helps a patient who wants to die, it is no more ethically troubling than when a doctor kills a patient slowly with morphine, often without the patient’s knowledge or consent, a medical practice these proponents say is increasingly common.

So why forbid doctors to prescribe lethal pills that could allow patients to control how and when they die? There is no question that doctors use morphine this way. “It happens all the time,” said Dr. John M. Luce, a professor of medicine and anesthesiology at the University of California in San Francisco. And there is no question that most doctors think that morphine can hasten a patient’s death by depressing respiration. But Luce and others are asking whether morphine and similar drugs really speed death.

Experts in palliative care say the only available evidence indicates that morphine is not having this effect. Dr. Balfour Mount, a cancer specialist who directs the division of palliative care at McGill University in Montreal, firmly states that it is “a common misunderstanding that patients die because of high doses of morphine needed to control pain.”

 No one denies that an overdose of morphine can be lethal. It kills by stopping breathing. But, said Dr. Joanne Lynn, director of the Center to Improve Care of the Dying at George Washington University School of Medicine, something peculiar happens when doctors gradually increase a patient’s dose of morphine. The patients, she said, become more tolerant of the drug’s effect on respiration than they do of its effect on pain. The result, Dr. Lynn said, is that as patients’ pain gets worse, they require more and more morphine to control it. But even though they end up taking doses of the drug that would quickly kill a person who has not been taking morphine, the drug has little effect on these patients’ breathing.

Dr. Kathleen Foley, who is co-chief of the pain and palliative care service at Memorial SloanKettering Cancer Center in New York, said that she routinely saw patients taking breathtakingly high doses of morphine yet breathing well. “They’re taking 1,000 milligrams of morphine a day, or 2,000 milligrams a day, and walking around,” she said.

The standard daily dose used to quell the pain of cancer patients, she added, is 200 to 400 milligrams. Dr. Lynn said she sometimes gave such high doses of morphine or similar drugs that she frightened herself. She remembers one man who had a tumor on his neck as big as his head. To relieve his pain, she ended up giving him 200 milligrams of a morphinelike drug, hydromorphone, each hour, 200 times the dose that would put a person with no tolerance to the drug into a deep sleep. “Even I was scared,” Dr. Lynn said, but she found that if she lowered the dose to even 170 milligrams of the drug per hour, the man was in excruciating pain. So to protect herself in case she was ever questioned by a district attorney, she said, she videotaped the man playing with his grandson while he was on the drug.

On rare occasions, Dr. Lynn said, she became worried when she escalated a morphine dose and noticed that the patient had started to struggle to breathe. Since she did not intend to kill the patient, she said, she administered an antidote. But invariably, she said, she found that the drug was not causing the patient’s sudden respiratory problem.

One man, for example, was having trouble breathing because he had bled from a tumor in his brain, and an elderly woman had just had a stroke. “In every single case, there was another etiology,” Dr. Lynn said. “Joanne’s experience is emblematic,” said Dr. Russell K. Portenoy, the other cochief of the pain and palliative care service at Memorial SloanKettering Cancer Center.

 He said he was virtually certain that if doctors ever gave antidotes to morphine on a routine basis when dying patients started laboring to breathe, they would find that Dr. Lynn’s experience was the rule. Patients generally die from their diseases, not from morphine, Dr. Portenoy said.

The actual data on how often morphine and other opiates that are used for pain relief cause death are elusive. But Dr. Foley and others cite three studies that indirectly support the notion that if morphine causes death, it does so very infrequently. One study, by Dr. Frank K. Brescia of Calvary Hospital in the Bronx and his colleagues, examined pain, opiate use and survival among 1,103 cancer patients at that hospital, which is for the terminally ill. The patients had cancer that was “very far advanced,” said Dr. Portenoy, an author of the paper. But to his surprise, he said, the investigators found no relationship between the dose of opiates a patient received and the time it took to die. Those receiving stunningly high doses died no sooner than those taking much lower doses.

Another study, by Dr. Luce and his colleagues in San Francisco, looked at 44 patients in intensive care units at two hospitals who were so ill that their doctors and families decided to withdraw life support. Three quarters of the patients were taking narcotics, and after the decision was made to let them die, the doctors increased their narcotics dose. Those who were not receiving opiates were in comas or so severely brain damaged that they did not feel pain. The researchers asked the patients’ doctors to tell them, anonymously, why they had given narcotics to the patients and why they had increased the doses. Thirty nine (39%) percent of the doctors confided that, in addition to relieving pain, they were hoping to hasten the patients’ deaths. But that did not seem to happen.

 The patients who received narcotics survived an average of 3 1/2 hours after the decision had been made to let them die. Those who did not receive narcotics lived an average of 1 1/2 hours. Of course, Dr. Luce said, the study was not definitive because the patients who did not receive drugs may have been sicker and more likely to die very quickly. Nonetheless, he said, the investigators certainly failed to show that narcotics speeded death.

Dr. Declan Walsh, the director of the Center for Palliative Medicine at the Cleveland Clinic, said it had been 15 years since he first questioned the assumption that morphine used for pain control killed patients by depressing their respiration. He was working in England at the time, and many doctors there were afraid to prescribe morphine or similar drugs for cancer patients, Walsh said, because “they were afraid they would kill the patients.”

So Walsh looked at carbon dioxide levels in the blood of cancer patients on high doses of morphine to control their pain. If their breathing was suppressed, their carbon dioxide levels should have been high. But they were not. Nonetheless, Walsh said, the idea that morphine used for pain relief depresses respiration is widely believed by doctors and nurses because it is “drummed into them in medical school.” So, said Dr. Susan Block, a psychiatrist in the hematology and oncology division at Brigham and Women’s Hospital in Boston, it is not surprising that many doctors try to use morphine to speed dying. “There is more and more evidence most of it unpublished, but it’s coming, I’ve seen it that physicians, in addition to wanting to ease patients’ discomfort, also want to hasten death,” Dr. Block said. “Everyone is feeling guilty.”

Source: NY TIMES July 23, 1997  http://www.chninternational.com/Opiods%20for%20pain%20do%20not%20kill.htm

No more pain angel.

Friends, Lasagna and chocolate pudding…


Gavin, Vic and Darren at Darren’s wedding in 2003

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Today was a great day!

Yesterday Hospice increased Vic’s pain medication by 25%.  The subcutaneous driver is holding up in her arm.  She has not vomited in the past 24 hours.  Vic spent wonderful, constructive time with the boys today.

Yesterday Renée, Jared’s extra maths teacher and a friend, phoned to hear if I wanted to go for a walk.  I declined as Vic was really not well.  Then she phoned to ask if everything was okay.  I said we were having a bad day.  She had read the boys BBM status updates and asked if I wanted her to pop around and help… I declined.   She phoned again and offered to cook us dinner… I said we had already prepared a meal.  Renée said “I will bring you dinner tomorrow night”….

My BFF, Gillian, is visiting.  It is so comforting having her around.  I felt enfolded by the normal-ness of her life today …She is a warm and comforting person who knows my soul as well as I know my own soul.   In the words of the great Aristotle:  “Friendship is composed of a single soul inhibiting two bodies.”  Gill is a safe haven.  I love the no-nonsense way she speaks, her efficiency, her single-minded loyalty and ability to love.  Gillian’s greatest character trait is that she loves unconditionally and NEVER judges.

Gillian is a second mom to Vic.

Vic, Gavin and Darren standing in the house we were building at the time

When our children were growing up we were inseparable.  Gill is a delicate, tough person but cannot handle blood.  I am a tough career girl but cannot handle needles being shoved into my child’s little body.   As young mommy’s I did the blood thing and Gillian did the dentist and invasive tests thing.  She would give the kids a quarter of a Panado and a sermon about bravery and march them off to the dentist, x-rays etc….  I cleaned wounds and stuck plaster over wounds…We are the perfect team.  United against our children….

Vic’s 6th birthday party with Len and Gill’s kids…

When the boys got mumps Vic got mumps, when the boys got chicken pox Vic got chickenpox… Vic had her own bedroom in Gillian’s home.

I cried when her eldest, Darren, went to school the first time.  His little knees were so skinny and looked like matchsticks in his school pants.

Gillian used to relieve me when Vic was in hospital and Len (her husband) would take me for tea and anchovy toast.  Gillian is the first person I phone when I have a Vicky crisis.

After my divorce from Vic’s dad Len and Gill once drove to my new apartment at 2am and took turns in consoling me.  The other sat in the car with the two boys sleeping on the back seat!  In my single days I would go to Gillian for a cooked meal with vegetables…I never cooked!  The night before I remarried I spent the night with Len and Gill.  We laughed and joked and ate toast… Gillian dressed Vic and got her to church…

Gill is one of the most amazing people I know.  She is a friend in a million.

My friend is now semi-retired.  She lives in a beautiful game reserve in the most beautiful part of our country.  Her home is warm and welcoming – a safe haven to a myriad of friends and family.  Gill chats to the boys on BBM and is always 100% up to date on what is happening in their lives.  When I travel Gill will check on Vic every single day!

Yesterday the panic was sitting in my throat.  I felt as if I was choking.  Today Vic is great and Gillian is visiting.  I am calm and at peace.

Tonight Renée dropped off the greatest lasagna and a chocolate pudding.  I am in total awe of the love that we have been surrounded by and absolutely amazed at the kindness that Renée had shown…..  We live in Johannesburg – a concrete jungle!  I am so deeply touched!

So, tonight as my little girl finally settled into a deep and pain-free sleep I allowed myself the luxury of a couple of tears.  Tears of gratitude for the love we are surrounded by!  Tears of gratitude that the pain medication is working!  Tears of gratitude for a good day!

I know that the pain medication will only work for a week or two and then it will have to be increased again.  At what stage will Vic’s body not be able to handle the pain medication any longer?

But tonight I am not going to dwell on my questions.

Just tonight I will indulge in an early night.

The friend in my adversity I shall always cherish most. I can better trust those who helped to relieve the gloom of my dark hours than those who are so ready to enjoy with me the sunshine of my prosperity. – Ulysses S. Grant

 

My beautiful friend in a pensive moment….

 

Mommy can you feel how sore it is?


Published with Vic’s permission and knowledge.

Hospice has just fitted a subcutaneous driver – again.   Vic’s pain has spiralled out of control over the past couple of days.

Vic was in absolute excruciating pain during the night.  She battled to breath.

“Help me Mommy!  I can’t stand the pain anymore…”

I lay next to her and put constant pressure on the area that hurt most.  It was just below her ribcage – liver.  “Oh Mommy, it is so sore.  Can you feel how sore it is?

As a little girl Vic used to believe that I could “feel” her pain…

“Feel how sore my toe is Mommy…”

As I lay there with my hand on her “sore” I wished with every fibre in my body that I could lay my hand on her sick body and soak up the pain and disease.  It cannot be so I look for a new spot on her bum to stick in a needle.

Vic seems calm now and the pain under control.  She is sleeping peacefully.  She has not vomited since this morning and managed to have a sandwich for lunch.

Please God let the subcutaneous driver work.  Please let the tissue hold up!   Please God!

“I shall continue the fight”


Vic when she was much healthier – 2011

Aarthi wrote Vic another beautiful poem.  Thank you Aarthi.  We needed your beautiful words to encourage and remind us today.  Vic is going through a particularly harrowing time.  She is suffering from severe nausea and the injections are no longer as efficient as before.  Poor little poppet!  She also broke another vertebra on Saturday when she put on her bra….

For the first time in Vic’s journey I am running scared of the amounts of pain medication her body needs.  This afternoon she was in excruciating pain – the pain was under the right-hand ribcage.  That is the liver.  Her eyes are slightly yellow and her skin a little sallow.

Over the weekend Vic walked into my TV lounge and I got such a fright when I saw her.  Her face was ghostly pale.  She actually looked like a geisha without the red lips and charcoal eyes.  Her eyes were dark from pain.

I had to phone Hospice this afternoon and ask them for more pain medication.  I am trying to work out what the effect of the increased medication will be to the toxicity levels in her body.  Hospice said we are at the 50/50 level.  The levels of medication can now be detrimental to her.  What do we do?

A calm courage waits in them
like a belief that breathes in her soul
those black pearls of mysterious 
power
glow like a beacon of hope
it is as if she is saying
i shall continue the fight
her will is deeper than she herself knows
that lustre speaks so much more
she is a gem as i can see
she is a warrior in her ways
that strength that originates in the depths of her
flows out and gives her eyes a brilliant grace…

https://tersiaburger.com/tag/httpsickocean-wordpress-comauthormysticparables/

http://sickocean.wordpress.com/category/poetry/

Final words….


Wedding day

This weekend I again realized that there are people who are going through worse hardships than we are….

Tom, our son-in-law is a lovely, warm and hospitable man.  He has made a huge difference in our lives.  He is brutally honest as an individual.  He has embraced the family and fulfils his role within the family with enthusiasm.   Tom is bright – very bright!  As a computer nerd he lives on STRONG coffee.   He loves playing cricket with the boys.

He is Lani’s soul mate and a wonderful back-up father for the girls.

A couple of months before Tom and Lani got married Tom’s dad died from a heart attack.   A year ago Tom’s sister was travelling from Cape Town with her Mom.  Tom’s mom had been diagnosed with breast cancer and had her first chemo treatment that morning.  A tragic accident…a car landed on top of theirs and Tom’s sister was killed.  His Mom was seriously injured.  Her accident injuries healed in time.

This weekend Tom travelled to Cape Town to say goodbye to his Mom…  She is dying.   Today my dear son-in-law had to sit next to his mom’s bed and speak his final words with her.   In my heart I can see him standing in the door of her room and looking back one final time….It is extremely unlikely that he will see her again….  What thoughts went through his Mom’s mind?  What did she see?  Did she see her adult son she must be so proud of or did she see her little boy playing in the sand?

I kept thinking how unbelievable privileged we are.  We are able to be with Vic every day, every second of the day if we chose…  There is no need for cramming in “final words”.  Every day we have new words, reassuring words, words of love and support.  I cannot imagine having to get up from Vic’s bed, saying goodbye and having to walk away!

Tomorrow morning Tom will wake up; go to work…his thoughts will be filled with thoughts of his mom.  How many times an hour will his mind turn to his mom and her final journey?

My poor Tom!

Travel well dear Marna….

the weight in my bones.


Photo Credit: http://bike-pgh.org/bbpress/topic/why-isnt-there-a-bridge-pedal-pittsburgh

This beautiful poem was posted by Aarthi –  http://sickocean.wordpress.com   on 24SaturdayNov 2012.  Aarthi is an exceptional poet who often moves me to tears.  Thank you Aarthi for sharing your amazing talent with us.  I encourage everyone to visit Aarthi’s blog.  It is filled with so much raw emotion.  

The Weight In My Bones

like bridges made
of concrete ropes

ripping through my existence
keeping me earthly bound

so sturdy yet unchangeable a part
i am all heavy with matter contained

i try and bend yet
the break never happens

like a deeper strength holding me
pain prevents a shattering noise

the water in me weighs more
than what gives me a shape

this will is fragile
and a regret pulls me down

purposes unsolved
promises broken

a thousand images shattered
everything that i never said

all remains in unwalked places
the pores in my soul

each window was blocked
in persistent steps, in days and years and decades

leaving all weight like
ashes of a past trapped

so diseased i feel at times
lifeless like a fallen twig

and the feeling weighs me deep
deeper than skin and all the soft human matter

i feel it in my bones
like i am bond to a mountainous stone

so welded inside with a belief
perhaps i may never be able to sleep

My Daughter’s Eyes


The eyes of my daughter

When i look in my daughter’s eyes
Its like looking into the skies
When i look in my daughter’s eyes
Sometimes all i see is her cries
When i look in my daughter’s eyes
You will never see any goodbyes
when i look in my daughter’s eyes
People will never be downsize
When i look in my daughter’s eyes
Maybe there will be some lies

marlena steiner                   http://www.poemhunter.com/poem/my-daughter-s-eyes/

 

 

So I don’t forget…


PHOTO IMAGE: http://www.blogcatalog.com/blog/just-a-lonely-girl/2

Lucinda commented today “Again, I can’t add anything on to what others have said; I don’t know how you have the courage to make these posts.”

I sometimes wonder why do I blog?  My whole being screams “so I won’t forget”.  I want to remember every day, every spoken word, every unspoken word, every feverish touch.  My friends have lifetimes ahead with their children…I don’t.  They have many more Christmases and birthdays to look forward to.  The chances are that their children will bury them… As a family we live one day at a time.  We are grateful for every morning when we wake up!

We have friends who lost their 17-year-old son almost 17 years ago.  I have not seen her in a couple of years.  When I last saw her she said that it does not become easier with time.  One just learns to cope with the pain and the loss.  My friend had to walk away from her son.  He was declared brain-dead after a drunk driver drove into the car transporting him to a rugby match….

She said “I touched his big feet.  I lay my head on his chest and I could hear his heart beat …. I walked away and his body was warm…”  Steven’s heart beats on in another person’s chest.  They generously, in all their pain, donated his organs.

Joan never had the opportunity to say “goodbye forever” to Steven.  She said “Goodbye, have a good game.  Love you!”  Joan treasures the last hug, kiss, laugh… She holds onto it.

I want to hold  on to every memory I possibly can.  As hard as it is I write so I will remember everything.

A lot of what I write I don’t post.  It is too raw.