“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/

 

 

What gives life will hasten death


Courtesy of: http://www.flickr.com/photos/violetteultracore/7442358584/lightbox/

 

I am so tired.  I think it is emotional more than physical.

Vic went to the movies with her friend Tracey today.  As she wanted to leave, Hospice arrived.  Sr Siza was VERY dubious whether she should go…  Anyway the boys went with to make sure she was okay.  They are so protective of her.

When Tracey dropped her at home she was so tired she could not lift her feet.  She immediately got into bed and I know it will take days for her to recover.  I am grateful that she enjoyed the movie.  I cannot believe my child went and saw The Twilight Saga Breaking Dawn Part 2!!  She is the most anti-vampire person I know!

She said “Oh Mommy, the one part was scary but it was so much fun!”

I have read up on the effects of continued morphine administration when someone is in Renal and Liver Failure.  We have no option but to continue the pain medication regime… It will help her live and yet it will certainly contribute even hasten her death.

I don’t care.  I want Vic to be as pain-free as possible.  It is becoming increasingly difficult to do so.  She is literally on a “morphine on demand” regime.  She cannot overdose – she is too used to Morphine.  The dosages have been titrated over many years…

It will be a difficult night.

 

 

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.

 

“Mommy, I have the hiccups again”


Photo courtesy of http://www.mindentimes.ca/2012/07/11/non-profit-facility-provides-vacations-for-dialysis-patients

 

Dr Sue has been.  The lung infection has cleared and Vic’s saturation is back up to 98%!  What a little trooper she is!

She is however in Stage 4 renal and liver failure.

Chronic Kidney Disease is diagnosed by the eGFR and other factors, and is divided into five stages:

Stage of Chronic Kidney Disease eGFR ml/min/1.73 m
Stage 1: the eGFR shows normal kidney function but you are already known to have some kidney damage or disease. For example, you may have some protein or blood in your urine, an abnormality of your kidney, kidney inflammation, etc. 90 or more
Stage 2: mildly reduced kidney function AND you are already known to have some kidney damage or disease. People with an eGFR of 60-89 without any known kidney damage or disease are not considered to have chronic kidney disease (CKD). 60 to 89
Stage 3: moderately reduced kidney function. (With or without a known kidney disease. For example, an elderly person with ageing kidneys may have reduced kidney function without a specific known kidney disease.) 45 to 59 (3A)
30 to 44 (3B)
Stage 4: severely reduced kidney function. (With or without known kidney disease.) 15 to 29
Stage 5: very severely reduced kidney function. This is sometimes called end-stage kidney failure or established renal failure. Less than 15

Only last week Vic complained to one of her siblings that she is battling with hiccups.  We laughed about it and reminded her of the old wives tale that if you steal you will get hiccups… We wanted to know what she had stolen… If any person in the world told me then that hiccups is a symptom of kidney failure I would of thought they were taking the Micky out of me!

Renal Failure Symptoms                                                                   http://www.mayoclinic.com/health/kidney-failure/DS00682/DSECTION=symptoms

Signs and symptoms of kidney failure develop slowly over time if kidney damage progresses slowly. Signs and symptoms of kidney failure may include:

Signs and symptoms of kidney failure are often nonspecific, meaning they can also be caused by other illnesses. In addition, because your kidneys are highly adaptable and able to compensate for lost function, signs and symptoms of kidney failure may not appear until irreversible damage has occurred.

 Chronic kidney failure can affect almost every part of your body. Potential complications may include:

 Treating the cause of kidney failure

Depending on the underlying cause, some types of chronic kidney failure can be treated. Often, though, chronic kidney failure has no cure. Treatment consists of measures to help control signs and symptoms of chronic kidney failure, reduce complications, and slow the progress of the disease. If your kidneys become severely damaged, you may need treatments for end-stage kidney disease.

Your doctor will work to slow or control the disease or condition that’s causing your kidney failure. Treatment options vary, depending on the cause. But kidney damage can continue to worsen even when an underlying condition, such as high blood pressure, has been controlled.

Treating complications of kidney failure Kidney failure complications can be controlled to make you more comfortable. Treatments may include:

CONCLUSION:  Vic’s kidney failure is irreversible.  There are no drugs to reverse the process.  The question can only be whether Vic will go onto dialysis….  The decision will be her’s to make.

 

 

 

 

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An end of life discussion is one of the most important things to do right


Vic July 2007

This is a subject very dear to my heart.  Vic has been saved from the claws of death so many times in her little life.  I often lie in bed thinking how much physical pain and discomfort I have imposed on Vic by not allowing the doctors to not give up.  By cajoling her into living.  Twice this week I begged her to allow me to take her to hospital.  I promised earlier this year that I would respect her wishes. https://tersiaburger.com/2012/05/18/6-5-2012-3/   

My BFF, Gillian, sent me this email message:

Morning, you summed up “Where did the time go” perfectly. I cannot believe that 8 years have passed so quickly. Jon Daniel was 7 and Dr said he would not understand about death, but Jared 9 would be able to comprehend and mourn. You wonder what is better……. When they are little or older. Vic our miracle child has hung in there for her Angels. She can only be commended on her will power to add another day to their lives. She has no life. Except to smile with sad eyes every time she sees the boys for another day. As hard as it is to nurse your child, you are also spared Another day good bad or ugly. God has sent Vic to us give each one a lesson – not to complain or give up – the Power of the mind. Be grateful for what we have body mind and soul. Love you all with all my heart

What Gillian wrote in her mail is so true.  If I had allowed Vic to die earlier she would of been saved incredible amounts of raw, undiluted suffering and indignity!  A couple of posts ago I wanted to include a photo of Vic’s abdomen so people could understand what a person looks like after 81 abdominal surgeries.  I decided against it as it is too horrific to post.  But we have been blessed with some wonderful times.  The boys are now old enough to understand the extent of her suffering.  At this stage I am focused on her pain.  I remember when I was stressed that she was taking a couple of hundred milligrams of morphine a week.  Now it is a couple of hundred per day…

Reblogged from http://www.kevinmd.com/blog/2012/11/life-discussion-important.html by  on November 11th, 2012 in PHYSICIAN.  I read this on Andrew’s blog  on http://lymphomajourney.wordpress.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-to-do-right/

During an internal medicine residency, newly hatched doctors are responsible for some of the sickest patients in their teaching hospitals. This is because those patients often don’t have private doctors to attend them and are poor and sometimes self abusive, with the complex problems that go with smoking, drug and alcohol abuse and lack of regular medical care. These patients often present with their diseases late in game, when much must be done quickly.

There is little or no time to discuss end of life issues and so the assumption is made that these folks want “everything done” which includes machines and potions to support organs and bodily functions as they cease to work right. A scenario might look like this: 48 year old heroin abuser comes in with fever of 104 and symptoms of a stroke. He is admitted to the intensive care unit with low blood pressure, becomes gradually delirious and his heart rate increases, he is sedated for trying to crawl out of bed and run off, he becomes lethargic and is unable to breathe for himself, a central line is inserted and he is intubated and put on a ventilator, his blood pressure is supported with pressors and fluids, his oxygen level cannot be supported despite high ventilator settings. His kidneys cease to work and his heart goes into a rhythm that produces no blood pressure at all, he receives CPR with chest compressions, he is resuscitated, but barely alive, unable to communicate, obviously brain damaged beyond repair, placed on dialysis, eventually succumbs to overwhelming infection. We call this a “flail.”  It is horrifying and time consuming and ultimately a colossal waste of human and monetary resources. Repeated experiences of this type sour most of us on the idea of being resuscitated, so many doctors consider themselves “DNR (do not resuscitate).” We don’t want to be resuscitated ever, no matter what. There are some things that are worse than death.

Some resuscitations go well, though. A patient arrives in the emergency department with chest pain, develops an arrhythmia, has chest compressions briefly and electrical cardioversion and is conscious within minutes or hours. Some people briefly can’t support their own needs for respiration and require a few days of ventilation before being able to breathe adequately. Although they are weak and puny for awhile, they go home and live to tell the story, go back to work, raise families, climb mountains. These successes usually happen to people who were vital before they became really sick, the younger folks, without multiple or terminal illnesses to begin with.

When someone is admitted to the hospital, the physician responsible for their care (which is more and more often the hospitalist) determines, if possible what their wishes would be regarding life support should their breathing or heart stop. These discussions are very difficult if the patient has not thought about resuscitation and has not talked with a physician who knows them about options.

Often patients have reasonable hesitance to make potentially life determining decisions with a doctor who they don’t know and who doesn’t have time to talk with them about the implications of these decisions. In our heads we have a pretty good idea of which patients would do well should they require cardiopulmonary resuscitation, and we really want people whose chances of recovery are lousy to tell us that they are DNR. A DNR decision means that will not flail them. We will not get into a situation in which failure is likely. Should this patient become so sick that medicines, hydration and appropriate surgical procedures cannot save them, we will transition to a strategy that makes death peaceful and painless.

We rarely succeed in communicating this to patients and many who will not benefit from cardiopulmonary resuscitation say “Oh yes, doctor, I want everything done.” Some say this because their experiences are different from ours, they have seen doctor shows in which resuscitation was successful, they think that withholding resuscitation means getting substandard care, and sometimes they think that we just want to spare ourselves the trouble of saving them. And some of these concerns are valid. A patient who is “DNR” may not be watched as closely or treated as quickly if they decompensate. Some people with horrible prognoses do get better after being resuscitated, though this is pretty uncommon and usually involves a pretty significant decrement in quality of life.

Even though it is hard to establish trust with patients or their families in the context of being a hospitalist, I think it is one of the most important discussions to do right. It is everso tricky, though. Even asking the question can make a patient frightened or hostile. They wonder if we are asking this question because we secretly think they are going to die soon. They feel that the subject is too private to broach with a near stranger. They have never thought about it and don’t want to start now. They think that if they make a decision not to be resuscitated that their family members will think that they don’t love them.

But sometimes patients have been waiting, oh so patiently, for someone to bring up the subject and be willing to take enough time to answer the questions that they have been afraid to ask. I find that a discussion of resuscitation is best started after I learn about who a patient is and what they have done for a living and what they spend their time doing at home. What were they good at when they worked? Do they have kids or grandkids? Where do they live, do they travel, do art, take care of other people, have pets? It is hard or impossible to help a person navigate the end of life if I don’t know them.

Even though I am a bit biased against intensive and technological medical care, I love actually doing it. The tools of this trade are really clever and the immediacy of the practice is inspiring and brings people together. I have seen beautiful and compassionate intensive care, which makes patients and families feel valued. Nevertheless, there are always the unintentional and casual cruelties of disturbed sleep, needles, boredom, prickly heat, bowel indignities, physical pain and nausea. Death following chest compressions and electrical cardioversion is not peaceful.

When I sit with a person and hear that, no, they don’t want intensive care or cardiopulmonary resuscitation should their heart or lungs cease to work, and it is clear that resuscitation is not in their best interest, my heart feels lighter. I can focus more on what the patient values rather than what procedures are most likely to keep them alive for the longest time.

Janice Boughton is a physician who blogs at Why is American health care so expensive?

A night out of hell


Vic had a night out of hell!  The nausea was vicious and unrelenting.  Pain reduced Vic to a whimpering bundle of human flesh.

Vic’s palliative Care physician, Dr Sue, visited Vic this morning.  I think she was a little taken aback by Vic’s condition.

Sue is an amazing person.  She was so gentle with Vic.  Vic’s heart rate is fast and her blood pressure is 101/58.  Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly.  Her oxygen saturation levels are low – 90%.

Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch yet the thermometer only reflects a temperature of 36.8⁰.

I asked her what I was doing wrong because sometimes, when I inject Vic and withdraw the needle, blood and/or the injection fluid spews out!  Sue explained that it because Vic’s collagen is so poor…. In layman’s terms; the flesh does not “seal” when I extract the needle….  That is why the subcutaneous syringe driver did not work and blood and whatever else spews out.

Vic is such as gentle, beautiful, caring human being.  Last night when I gave her an additional morphine injection, in desperation, she said “Mommy, what do poor people do who have no access to pain medication?

As a layman with access to Google I Googled “low oxygen saturation” and nearly had a heart attack of my own.

Basically, a saturation of 97% of the total amount of hemoglobin in the body is filled with oxygen molecules. A range of 96% to 100% is generally considered normal. Anything below 90% could quickly lead to life-threatening complications. The margin between “healthy” saturation levels (95-98%) and respiratory failure (usually 85-90%) is narrow. If oxyhemoglobin is low (below 90%) inadequate amounts of oxygen will reach body cells!

As a rule of thumb, respiratory failure usually occurs when saturation (SpO2) falls to 90%, although some patients with chronic respiratory disease may tolerate lower saturations. http://www.favoriteplus.com/oxygen-saturation.php

Every time your blood oxygen level falls below 92% saturation your body suffers drastic consequences Insufficient oxygen level is an immediately life threatening issue. http://www.heartfailuresolutions.com/34/oxygen/low-oxygen-levels-how-low-is-too-low-and-should-you-worry

By tomorrow afternoon we should start getting the results in from the blood tests and blood gases.  In the interim Sue has increased the amount of intravenous anti-nausea medication as well as the pain medication.  Dr Sue will make a call tomorrow whether Vic should go onto oxygen or not.

We have cancelled all our vacation plans.  We desperately wanted to take the boys away for a couple of days to give them a break, but it is not possible.  We will have the best Christmas ever.  A Christmas filled with love and togetherness….  Maybe our last.

 

 

 

 

Signposts for Dying


Yesterday I posted on “time”.  Today after the visit from the Hospice sister I actually realized that just maybe Vic has entered the first stages of dying 

Some of the stages of dying start to be discernible a few months before death occurs.  

 Vic has become less active; she rests more, sleeps more and has withdrawn into her own inner realm. 

 Vic is reliving memories and spends a lot of her awake time talking to the boys about her childhood, her “illustrious” school career and their childhoods.  This year she relived every minute of her father’s final journey… Vic has started living in the past.  

 I read that it is the terminally ill’s way of taking stock of their lives and making their peace with it.

 Vic no longer eats big meals and I seldom hear her say “I am ravenous”.  Due to the 81 abdominal surgeries and multiple bouts of septicemia  Vic’s absorption is very poor.  (Poor absorption = BIG appetite!)  Vic used to have the appetite of a horse – always nibbling and scrounging for food.  Now it is sheer discipline that keeps her eating.  She knows she cannot have medication without eating first.  Strange thing is that she is not really losing weight.  Hospice says it is due to the high levels of cortisone she takes…  I have been told by Hospice not to worry about her loss of appetite.  Her body does not need a lot of fuel (food) anymore because it is not burning a lot of energy anymore….

 The effect of the reduced food and liquid intake is that the body starts producing chemicals that create a feeling of mild euphoria.  Our bodies actually start relaxing into this stage of dying. 

 Vic still drinks a fair amount of coffee.  She used to drink it warm but now she dozes off before she has finished her cup of coffee.  She will wake up and take a sip of cold coffee… A cup of coffee now lasts a long time.

Vic spends the majority of the day in bed, gently dozing…. It is not a deep sleep.  It is as if her little body is preparing to hibernate….preparing for what lies beyond death whether it is Heaven, Nirvana or the Other Side…. 

 Reduced appetite and increased sleep is called “Signposts for dying”.

 A couple of weeks ago Vic was very emotional.  She would tear up without any reason.  This stage has passed.  It is as if her tears cleansed her soul. 

 Vic is battling with loneliness.  She hates being alone.  If she could she would have one of us around her all the time.  She often complains that we do not spend time with her.  We do spend a lot of time with her.  She just dozes off and then we leave to carry on with our lives…  The boys are writing exams – they have to study; I have to work…. Dying is a lonely journey

 Vic is not in good shape at all.  She is suffering severe cramping and nausea that is not responding to any of the medication.  The Hospice Sister called the doctor this afternoon and asked her to see Vic in the morning.  She also suggested that Vic be admitted to Hospice In-Patient’s.  Vic and I firmly declined…

 It is obvious that Vic has one or other infection.  I think it is the abdominal sepsis.  She seems flushed and feels hot and cold.  The thermometer does not reflect her running a fever.  This is obviously something as Ceza mentioned it to the doctor.  She explained that this happens when the auto-immune system is compromised.  I have tried to Google it but without too much success.  I will ask the doctor tomorrow morning.

 Vic is in terrible pain tonight.  I have already given her double her normal evening morphine injections; double the quantity of morphine syrup; I have changed her Durogesic patches…. I lay behind her back and gently held her until her breathing became deep and even.  She whimpered in her drug-induced sleep….

 I know the shutting down process has started.  Not because Hospice told me but because Vic told me. 

 Will my poor baby’s hell ever end?  If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!!  This has come to an end!

 

 

“How did it get late so soon” – Dr Seuss


Two minutes to twelve…..

Today I read a lovely blog that Andrew had reblogged.  http://lymphomajourney.wordpress.com/2012/11/10/living-with-cancer-its-about-time-nytimes-com/

Several studies have suggested that when dealing with terminal illnesses, especially cancer, doctors are usually incorrect in their prognosis, nearly always tending to believe that their patients will live longer than they actually do. 

In one study involving patients in Chicago hospice programs, doctors got the prognosis right only about 20 % of the time, and 63% of the time overestimated their patients’ survival.

Interestingly, the longer the duration of the doctor-patient relationship, the less accurate was the prognosis. “Disinterested doctors . . . may give more accurate prognoses,” the authors wrote, “perhaps because they have less personal investment in the outcome.” http://www.kevinmd.com/blog/2012/04/doctors-incorrect-prognosis-terminal-illness.html

Eight years ago we were told that Vic’s life was “compromised” and that she would die within the next 5 years.  Eight years later Vic is still alive.    Maybe Vic’s doctor is too close to Vic….

Eleven years ago Vic had blotched back surgery setting her off on a journey filled with pain, 81 abdominal surgeries, years in hospital and millions of rands worth of medical expenses.

Vic realized that her life had been compromised and started saying “If only I can see Jared go to school…”  I remember her joy the first day Jared went to school.  Then she said “If only I can live to see Jon-Daniel go to school…”  I remember how desperately ill she was the day Jon-Daniels started school….

Now both her boys are in High School.  I never hear Vic saying “I wish” anymore.

Tonight we discussed going to the coast for a week in January.  Vic just shook her head sadly and said “It is too far Mommy.  Even if I fly down I think it will be too much for me…”

It is all about time.

Time grinds to a halt when Vic needs her 4 hourly pain medication and there is an hour to go… when she screams from pain and her blood pressure is too low for more pain medication to be administered…

The longest nights are the nights before surgery and after surgery.  The longest passage is the passage outside the operating theater and ICU.

Whilst I was in the UK Vic did well.  She fired her nurse and administered her own injections into her legs!  I have been home for six days and Vic is really ill.  I expected her to have the “up-time” whilst I was gone.  I knew that she would use every ounce of her residual strength to be “good” while I was gone.  Vic bounced around and amazed everyone who came into contact with her.  Cr Ceza, her Hospice sister, however spoke to her in the presence of Danie and Esther and told her that the ONLY reason she was feeling great was because her pain control was optimal.  Her body would however betray her.  She said that Vic’s body has started shutting down….slowly but surely.  The process is inevitable… I believe that Hospice is wrong.  They have to be wrong.

Tonight I am sitting here just wondering where time has gone.

The Blog I read today articulated my thoughts and emotions so accurately

“In the immortal words of Dr. Seuss, “How did it get so late so soon?” Without much of a future, surely time will again change.   A lot can happen in a year — think of the helpless infant becoming a walking, talking toddler in 9 or 10 months. Time moves more slowly for small children, since a year of a 2-year-old’s life is 50 percent of that life. A terminal diagnosis may also slow down time. The next year might be 100 percent of what’s left of my existence.”

Sometimes the time left seems too long; too many catastrophes could injure those I love. Sometimes it seems too short; there are so many suspenseful stories unfolding around me, and I want to see how they will turn out. Those for whom time’s chariot is indeed winged often attest to a heightened appreciation of their fast-fading prospects. And then there is always the dream of borrowed time, that numinous period beyond the predicted end, like a stay of execution, which must be fraught with its own blessings and curses. .  http://lymphomajourney.wordpress.com/2012/11/10/living-with-cancer-its-about-time-nytimes-com/

We have already had so many “extra” years.  But the fact remains that Vic is ill.  Today she is more ill than yesterday or even last week or last month.  It is not an UTI causing the pain and fever.  Her pain control is good enough to mask symptoms.  Waves of severe nausea and cramping remain…

I don’t even want to consider the possibility that the pain is caused by Vic’s organs slowly starting to shut down….. One organ after another….  I have read that it feels “uncomfortable”.  It is called terminal agitation.

Only time will tell….  Time is all we have….

How did it get late so soon?

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https://tersiaburger.com/2012/10/15/remission-15-10-2012/https://tersiaburger.com/2012/08/02/5-stages-of-dying/  https://tersiaburger.com/2012/08/08/dummys-guide-for-the-parents-of-a-terminally-ill-child/ 

https://tersiaburger.com/2012/07/02/vic-regrets-not-going-to-italy/ https://tersiaburger.com/2012/07/20/thank-you-god-20-7-2012/  https://tersiaburger.com/2012/08/05/what-can-we-hope-for-when-there-is-no-hope/ 

“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell


 

26.6.2012 Before Hospice

Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..

It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.

It is estimated that a maximum of 5% of people who die from terminal illness in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.

Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?

Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?

They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?

I read the post of an amazing woman who is suffering from congenital heart failure.  She is in so much pain.  I cried when I read her post.  http://thedrsays.org/2012/11/08/  She replied to a question whether better pain control was possible…..  “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”

Vic has received a new lease on life.  Vic has 100% better quality of life since her pain is under control. We discovered, through the expertise of a wonderful palliative care team that Vic’s body did not absorb monstrous quantities of morphine! Now she is not only functioning, she is LIVING!  Vic is more lucid than she was before.

The pain was killing Vic… Palliative care has given her life.

Living life to the full!

 Being prepared to die is one of the greatest secrets of living.   George Lincoln Rockwell 

 

 

 

 

One bloody tear


Photo courtesy of http://500px.com/photo/5192248

Thirteen years ago Vic’s dad was involved in a bad car accident.  He was airlifted to a hospital with an excellent trauma unit.

When Vic and I arrived at the hospital we were greeted by a trauma councillor.  He explained that Tienie was being stabilized but that the situation was grave….  It was terrible seeing Tienie lie in the ICU ventilated, swollen, battered and bruised.

The news was not good.  Tienie would be a quadriplegic if he survived….

Tienie was one of the most vibrant, energetic party animals I ever knew.  We were childhood sweethearts.  We started dating when I was 13.5 years old.  I have photos of us dancing at his 16th birthday party.  We got married very young.  We got divorced very young.  We remained friends and business partners until his death.  Tienie was an accountant by profession and hated every second of it.  He turned to property development and went from one cash flow crisis to the next.  He was one of the most intelligent people I ever met but also one of the stupidest!

Tienie was a giver… He would give away the clothes off his back.  He hated sleeping.  He said it was a waste of time.  Tienie never cried… he mourned Vic OI diagnosis in a different way.  Some men love cars…Tienie loved women.  He was a loyal friend.  He was the world’s friend.  Everybody loved Tienie.

The day after the accident I had some time alone with him.  I spoke to him and told him that I had forgiven him for cheating on me and finally leaving me.  Standing next to his bed I realized for the first time that I had also caused him a lot of pain!!  I asked him to forgive me.

I also told him that I knew he was worried about his situation at that moment in time.  All he had to do was pray to God and ask him for forgiveness.  I held his hand and prayed for him.

A single bloody tear ran down his cheek.  I knew he had heard me and that all was okay….

The machines went crazy and I was asked to leave.  I knew Tienie was gone as I walked out of the ICU….

Six days later Vic signed the consent forms for the machines to be switched off.  She also signed the consent for Tienie’s organs to be donated.  That is what he would have wanted.

Tienie was buried on his birthday, the 10th of November 1999

Thirteen years later my child still mourns her father.

I know that when the time comes Tienie will be there to take Vic’s hand to lead her towards the light….

Tears are sacred…


There is a sacredness in tears.  They are not the mark of weakness, but of power.  They speak more eloquently than ten thousand tongues.  They are messengers of overwhelming grief…and unspeakable love.”

Washington Irving

 

Vic’s Roller Coaster….


 

 The Voyage
Located at Holiday World in Santa Claus, Indiana, this roller coaster is a wooden hybrid consisting of a steel structure and wood tract. The lift goes up 163 feet, before falling 154 feet, then up and down 107 feet, and once more up and down 100 feet. Not only that, it goes through five tunnels, and it is the second longest wooden roller coaster in the world with a run of 6,442 feet. The top speed for the roller coaster is 67.4 miles per hour, third fastest in the world among wooden roller coasters. If the drops and trips through the tunnels was not enough to make you cringe, there are three 90-degree bank turns. http://roadtickle.com/worlds-scariest-roller-coasters

The life of someone who is chronically ill can be equated to being on a roller coaster ride.  Physically (and emotionally), you can be up and hopeful one minute and down and despairing the very next. The illness inevitably takes unexpected and unpredictable turns. One disease can dispose you to or give rise to another. Cortisone suppresses the immune system and is used to treat inflammation.  Cortisone weakens Vic’s bones further and has resulted in her developing Addison’s….This is frightening.

Every chemical that enters your body has a side effect.  Correct and adequate pain control, a healthy diet, balanced lifestyle is needed to minimize the effect of the illness on your daily life.  Living with illness affects every part of your life and every significant relationship you have.

There have been times in the past couple of months that all Vic can do is lie in bed and breathe.  Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement.  There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milkshake.  She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!

Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused.  She is on the down ride hurdling to who knows what stage of her journey.

Vic is so sad that she is unable to actively participate in her children’s lives.  Most friends have stopped calling. Her sense of identity is blurred. She has been reduced from being a wife and mother to “a child”.

Danie and I planned to go to dinner on Friday night.  Vic was not well so we decided we would go on Saturday.  On Saturday Vic had another lousy day.  She fluctuated between being confused and weepy.  She was up and down like a little jack in the box.  By Saturday night she was asleep on her feet.  The intestinal cramping kept her awake.  She was weeping from pain and frustration.

Last night Vic cried “Mommy, I am such a burden.  You don’t have a life because of me.”

“Sweetie you are not a burden.”

“I am” Vic sobbed.  ”You can’t even go to dinner with your husband because you don’t want to leave me alone.”

“Sweetie, it was our choice to stay home”  I said

“But I have ruined your life” Vic cried….

Jared spent the weekend with a friend.  The child never goes out.  The two of us are too scared to leave.  I suppose we have become overprotective control freaks.

I have come to realize that I must take a break. It is not only for my own sanity but for Vic and Jared’s sake’s too.  My protective behavior is a bad example to Jared and is causing Vic distress.  My entire family is concerned that I will “crack” under the pressure.

I hope to fly to England for just over a week to spend some time with my UK children.  I have so much to arrange.  I must sort out the toy cupboard in the girls’ bedroom to make space for a nurse; I must appoint a nurse; get adequate medication in; get Hospice to okay the trip; buy groceries to see the family through and cook a couple of emergency frozen meals..

Vic’s symptoms wax and wane on this roller coaster ride of hers. Her illness is slowly depleting her energy reserve. A cold or infection can overwhelm her ability to fight it and her overall health and functioning can change dramatically – very suddenly. There will come the day that we will not be able to clear the partial obstruction or to contain the infection…..

I hope that it will not happen whilst I am away.