Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
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
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”
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.”
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 readyto enjoy with me the sunshine of my prosperity. – Ulysses S. Grant
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!
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…
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?
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
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.
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!
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.
“Worrying is carrying tomorrow’s load with today’s strength carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.” ~ Corrie Ten Boom – I read this on Dr Bill Wooten’s blog http://drbillwooten.com/2012/11/17/todays-strength/
This is so true. I have been so worried about Vic’s latest symptoms The body is such a complex intertwined mechanism…. I am absolutely fascinated at how everything links in… I just have to discover the function of the appendix and it’s interwoven functions…
Vic is having a lousy day. She is exhausted and very swollen. Despite the injections she has been nauseous all day. This evening she had another vomiting bout. Tomorrow we will see Dr Sue again. Just maybe there is a 3rd anti-nausea type injection available
Vic also complained of a terrible “acidic” feeling.
I Googled her symptoms and found something that matches her new symptoms and blood test results.
In medicine, metabolic acidosis is a condition that occurs when the body produces too much acid or when the kidneys are not removing enough acid from the body. If unchecked, metabolic acidosis leads to acidemia, i.e., blood pH is low (less than 7.35) due to increased production of hydrogen by the body or the inability of the body to form bicarbonate (HCO3–) in the kidney. Its causes are diverse, and its consequences can be serious, including coma and death. Together with respiratory acidosis, it is one of the two general causes of acidemia.
Over the past 5.5 months I have received many messages of encouragement, prayer, support, empathy and an outpouring of love. Until now Vic’s final journey seemed so pointless and unfair ….
A million times I have asked myself WHY Vic? Why has she had to travel this horrifically painful journey? Why do her boys have to live and witness this pointless pain and suffering?
I realize now that Vic’s suffering has made us aware of the suffering of others. In my country we have a terrible poverty problem and only 5% of people dying have access to palliative care. Maybe Vic had to travel this terrible road so the world can become aware of the 95%’s plight.
Tonight I was reading through the comments I received on my latest blogs. I would like to share some of it with you. I randomly copied some of the comments for you to read:
Tersia, I am still with you, and so touched that you are so conscious of all that is going on around you. I hope that as Vic surrenders, as she is already doing,, so do you, so that this stage of both of your lives becomes an experience you couldn’t have imagined.
I hope as Vic begins to feel that gentle euphoria, you too get a share of it… the body and the mind are so complex and beautiful that not everything happens as we think it should, and I hope your grief is somehow eased and soothed. Thinking of you all, Valerie
PS I hope you don’t think this message is insensitive….
In the final stages dying is something we do alone. i have often thought i would like to enter that final sleep while my husband is out. maybe that is just me and my desire to spare him more pain. you and vic are so close and i don’t think there is anything that can be said to make this more bearable for you. my heart aches for you, your husband, vic’s boys, her siblings and extended family. just remember it is easier to be the one leaving. we know that our suffering is going to end. it is your suffering we despair. whatever is meant to be will happen and yet i can’t help but hope for you to have enough time to be ready to let go
November 14, 2012 at 07:29(Edit)My thoughts and prayers are with you and the family. I pray that you will all have peace in your hearts and minds as you await Vic’s release from this terrible suffering.
Amazing that you are sharing this difficult journey with all of us. This takes a lot of courage, and Vic is so lucky to have you (and the others) around her at this time. And we are so lucky to benefit from your sharing, should (or when) we find ourselves in comparable situations. But right now, my thoughts are with you and your family.
Ray’s Mom says: November 15, 2012 at 00:53(Edit) Tersia I wish you didn’t have this to bear, that your daughter could magically recover. God is with you and your daughter is so fortunate to have you near. Thank you for sharing this life experience.
optiesays: November 13, 2012 at 07:46(Edit) I am so glad that Vic has been blessed with these “extra” years but I am sure she is aware that they come at a cost to her and the family. We are never ready to say goodbye to those we love dearly. Vic’s suffering is terrible and my prayer for her is that the pain control will be well managed till the end. My heart goes out to you as a mother and grandmother, I cannot imagine what it must be like for you to have witnessed all that Vic has been through.
Gilliansays: November 17, 2012 at 07:02(Edit)That is brilliant idea, is there anything I can do to help you get the (Hospice) centre up and running.
I have to thank you for bringing a subject most feel they cannot talk about out in the open in such a loving way ~
I would wish too be able to move forward with your goal with a hospice there in your area know If you need a latter writing campaign, or anything i can do from here please never ever hesitate to ask me please. You are making a beautiful thing out of the tragedy of Vic;s life being cut far too short.
sbcallahan says: November 16, 2012 at 03:06(Edit) it is only normal to want to hold on to your beloved vic. i do hope with all my heart that you can let her go if that is what she wants now. at this stage you know that her suffering is going to go on and no one is served by her continued pain. this is the hardest thing you will ever do but you can find the strength to do it. wishing you peace of heart
Barefoot Baronesssays: November 17, 2012 at 17:38(Edit) My God Tersia. I was instantly taken back to my mom who had stage 4 lung cancer that we were aware of just 2.5 months after diagnosis. I know the fear of the low oy2 count. I do know the fear of the oy2 therapy. What I did not know is the long lasting journey that you & Vic know.
Every post you share and I read I am left with this love for you both that seems to wash away all those things in life that matter not one bit. I have stopped sweating ALL the small stuff. There is something so loving & giving in your sharing with us, but more importantly Vic’s children are always going to have this. your journal of their mom’s life. I cannot think of a more loving, tender and generous thing for a mother and grandmother to do. my prayers and wishes are that this cathartic in a good way for you.
Although I am still behind in reading posts I have devoted m, myself to missing one of yours. Just may put me behind in commenting and I am wondering and hoping this does not cause you more pain having to come back to a memory of a few days ago. You tell me if so because I will understand and honor your wishes.
My gentle hugs to you both, Please give my love too. ~ BB p.s. you will forgive me please..I cannot hit the like button on your posts.
Barefoot Baronesssays: November 17, 2012 at 19:41(Edit) My Dear friend, You have choked me up with tears. You, who is going through so much have the sight to see beyond. I am humbled by your kind and generous words. I’d like you to know that any time you need a cyber-shoulder to lean on I would be honoured if you chose me at times, or all the time. You can even email me, you have my permission.
I am grateful Tersia for your words. I mean what I said that the small stuff is not on my plate anymore. If it arises I am able to just kick it to the curb with no further attention. You & Vic are enforcing this belief in myself every day Vic should know that all she allows to be shared is the most loving gift any human can give to another at this time when real wisdom’s surface. It’s amazing to me that at a time when it would be allowed to let her withdraw she instead reaches out to her children, her mom, and via your blog even her words.
Thank you so much for this message~ My love & gentle hugs to you both.
My Blogsays: October 20, 2012 at 00:43(Edit) I too wish your child could be pain free. After I read your post I logged on to Facebook. My daughter posted about her migraine, and how her meds aren’t working. I too suffer from migraines and blame myself for passing them down to her. I wish I could help. All I can do is love her and be there when needed. Keep up your strength. We’re with you and your daughter in spirit
thedarkest13 says: October 19, 2012 at 20:51 It’s amazing that you have that openness with your daughter and the living fear and pain is going to be there. We are made to feel loss and sorrow. Especially when it’s our children. I am truly sorry for what is happening and watching is not easy. Just enjoy what time you do have and make the most loving memories you can. You both seem amazingly strong and I don’t even know you. The love you have transcends these moments.
those moments between you and your daughter those drops of peace and happiness and joy save them like drops of pearls save them like diamonds rare that is a form of unending love that gives and gives and never expects be there like a rock for your child and i am sure she would win and survive our world is one of miracles too our world is an oasis rarities and your child too shall her courage prove just be there with a smile always give her the courage to stand taller than before she shall overcome her struggles soon prove all wrong and herself right she must win and win this time make sure you are there to know witness her strength, her wars, her fight love can kill the worst of fears and happiness shall soon return changing the way she views her life…
with love and regards…
Dedicated to Vic and her wonderful Mom. :)
Peter Wiebesays: October 22, 2012 at 01:14 I so appreciate your openness. I pray that nothing will happen while you are away. I pray that Jesus will bring you comfort.
Andrewsays: October 22, 2012 at 03:51 I always found the roller coaster metaphor powerful during my cancer treatment, recovery, relapse, treatment, and recovery again and I think you have captured it well with Vic. Good for you to get away for a week – caregivers sometime forget that they need care too. Best wishes.
Gillian says July 4, 2012 at 04:56(Edit) Dear Tertia, Do not be so hard on yourself. You have so much on your shoulders, you are allowed to have emotions, you are allowed to get irritated, What you need is a good, well deserved mental rest where you stop trying to work things out yourself …… A long much-needed look at the beautiful creations, topped off with some quality time with a friend. And trusting someone to assist with Vic for 2 days a month. She does not want to feel that she is the cause of you being house bound. Read Matthew 11:28-30. XXXXX
dlmchalesays: October 12, 2012 at 20:48(Edit)I only bookmark a handful of sites that I “need” to follow; sites that do more than convey information – sites that cause an necessary evolution of my own humanity. Your site is at the top of that short list. I have so much empathy for what your family endures on a day to day basis, so much so that there are times I can’t even read another paragraph because it physically hurts to watch you and your loved ones afflicted so.
I know there are times when you feel like giving up. That is more than understandable and you should not run from those feelings….these types of reactions actually keep you sane. But know this: in your darkest moments, when all else seems insurmountable, ….you are not alone, in spirit, in prayer, in thought. You need never edit your writing to mask this incredible pain. In sharing such a violent and honest summary of your families pain, you bring a sense of belonging to something bigger to all those people who are enduring similar challenges. I can’t tell you why the unfairness of it continues. But I can witness that you have been a champion of love and a gladiator of emotional support. You make a difference in this fight…a big difference. We….the people who experience this on vicariously through your written word…also have an obligation, one that I commit to and cherish…and that is to be here for you when you need us. You are an inspiration to me.
Dennis
micey says: October 23, 2012 at 21:12 Hi Tersia. I finally made it to your blog. I’m so sorry for the suffering your family is living through. I pray the Lord gives you strength to carry on each minute of the day. I pray He fills you with peace. I pray for miraculous healing for your sweet girl. I pray for the end of suffering. I pray you have a safe and wonderful trip to visit your family. I pray you receive many hugs from those you love. I pray you find rest for your weary soul.
in the final stages dying is something we do alone. i have often thought i would like to enter that final sleep while my husband is out. maybe that is just me and my desire to spare him more pain. you and vic are so close and i don’t think there is anything that can be said to make this more bearable for you. my heart aches for you, your husband, vic’s boys, her siblings and extended family. just remember it is easier to be the one leaving. we know that our suffering is going to end. it is your suffering we despair. whatever is meant to be will happen and yet i can’t help but hope for you to have enough time to be ready to let go
I am so proud of my beautiful Vicky who has made a difference in so many people’s lives. I am proud that is her most pain filled moments she can think of others who are less fortunate than she is.
I thank Vic for the vision of a Hospice in our city. I want to thank everyone who has sent us messages of comfort, support, encouragement and prayers… Thank you for walking with us on this difficult journey. Thank you for the love you have shown. Thank you for your prayers.
If this post does not make enough sense please forgive me. Today has been a very difficult one for Vic. She is so tired. I am just trying to make sense out of everything…..
The comments I extracted were absolutely random and does not minimize the value and comfort I experienced from the hundreds of wonderful messages I have received. Most of my readers/followers have life-threatening diseases, lost a child, suffer debilitating pain of their own and yet they care! Thank you.
Last night was a better night. The additional anti-nausea injections are working. I hope the antibiotics are working.
Hospice measured Vic’s SP02 levels today and it is between 84 and 88%. I don’t think that is a good sign. Lani, second eldest stepdaughter, phoned me last night and told me that she had chronic ill patients whose SP02 levels were as low as 70%. Lani is a physiotherapist. I felt better after our chat.
Vic is extremely tired. She went out for coffee with her best friend, who, very recently, was diagnosed with breast cancer. Vic is a compassionate and caring person and wanted to support her friend emotionally! When she got home she had a lie down – for the rest of the day.
Tonight I helped her bath and wash her hair. Poor poppet, she is so exhausted after her bath that she had to lie down and is taking a nap again. Her hair is still damp but we will dry it later. I hope she has a better night but I am not very optimistic.
Whilst I was rinsing Vic’s hair she said “Mommy what do people do that don’t have a family like mine”
“Oh sweetie, it must be very hard for them…”
“Sometimes I feel guilty because I take up so much time, money and attention from you. I have taken up your entire life…” Vic said
“But sweetie, we love you! What do you want us to do less for you to feel better? Tell me and we will do it!”
We both laughed and the moment was over…
A while back I made a decision. We do not have our own Hospice in our suburb. We fall under the auspices of the Houghton (Johannesburg) and are literally the orphans of the system. I am going to start a Hospice in Alberton.
This Hospice will focus on palliative care and will bring purpose to Vic’s suffering. It will be a monument of her suffering and her compassionate nature.
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
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.
Vic's Final Journey 
