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.
I hardly received any 2013 New Year’s wishes. Normally I would receive so many beautiful wishes but this year I received messages for a” peaceful New Year’s Eve filled with laughter and good memories…”
Jared went a friend’s home; Danie went to bed early – he is coming down with flu; Vic was asleep so that left Jon-Daniel and I. We watched Comedy Central and had some good laughs waiting for 2012 to end.
Jon-Daniel loves making his Mommy laugh. In a way I suppose he uses humour as a coping mechanism.
“I think we should wake Mom up at 12” I said
“Okay…Let’s sing Happy Birthday to Mom….” He said with a twinkle in his eyes.
As the hooters and sirens started going Jon-Daniel and I sneaked into Vic’s room and sang “Happy Birthday to you…” Vic opened her eyes and said “What is happening?” and immediately fell asleep again.
The joke was on us.
Today was a quiet day. The boys spend some wonderful quality time with their Mom. Danie remained in bed until almost 4pm as he is feeling lousy from the flu. We all drifted in and out Vic’s room. In the afternoon Jared went for a swim. Vic went outside and spoke to him.
Jared had some questions and she patiently explained to him what an “Executor’s” duties are. She explained why Leon and I were the Executors of her will and the Trustees of their Trust. (I got some lovely photos of Vic chatting to the boys!) Vic tried to show Jared that she could whistle through an acorn… Jon-Daniel taught her! As much as she tried she could not get a sound out of the acorn. To everybody’s laughter she said “But I can do it!”
We convinced her that she should get onto the inflated lilo. The cold water would reduce her body temperature and the sun would be good for the jaundice. Very reluctantly she got onto the “non- life-saving inflatable device”. I got into the pool with Vic.
Esther and Yuri arrived and she made a dash for her camera… later Leon and Henk arrived. The boys swam and laughed and played…
It was a wonderful day filled with glorious memories. We laughed and joked and eventually ate. Esther lay with Vic and they spoke about where Vic was in her journey.
It was a special day.
I think friends and family don’t know what to wish us…How do you say “Happy New Year” to a household where death is knocking on the door? I would not know what to say to us if I wasn’t me…
But from our home to yours: We wish you a great 2013. We hope that 2013 is filled with laughter, good health, abundance and time to do some good every day. We thank you for your love and support. Thank you for your prayers and words of encouragement. You have been such an amazing source of comfort to us.
Thank you Hospice for giving us the means to have these special memories! Thank you to the manufacturers of Morphine, Pethidine, Stemitil and Buscopan…
The albatross is a large seabird with a wingspan of up to eleven feet. The albatross are regarded as the planet’s ultimate frequent flyers. The albatross don’t flap their wings, they use wind energy. An average black-browed albatross may cover 100 miles a day during its lifespan of more than 40 years. Over a lifetime, an albatross may cover 1.5 million miles.
A master at gliding, the albatross can stay aloft on virtually motionless wings for many hours at a time. For that reason, seamen used to believe that the albatross had magical powers. There was also a belief that albatrosses, hovering endlessly above the ships at sea, contained the souls of lost sailors, former comrades of the sailors below. Many sailors believed that disaster or death would haunt anyone who harmed or killed the bird.
In 1798 the great English poetSamuel Taylor Coleridge made albatross mythology the basis for his famous poem The Rime of the Ancient Mariner. The Ancient Mariner (that is, the “old seaman”) tells the story of how he, while on a ship at sea, killed an albatross for no apparent reason. Later the wind stopped blowing, and the ship could not reach port to get fresh water.
The crew assumed that the disastrous turn of events occurred because of the death of the albatross. Angry at the Ancient Mariner, the crew picked up the dead bird and hung it around the man’s neck as a symbol of guilt and punishment. The profound intent of the symbolism was reflected in the Ancient Mariner’s own words:
“Instead of the cross, the albatross
About my neck was hung.”
Today that imagery has generalized, so that anything that causes deep, persistent anxiety can be called an albatross. And an encumbrance that hinders accomplishment is an albatross around one’s neck.
(Principal sources: Oxford English Dictionary; Darryl Lyman, Dictionary of Animal Words and Phrases, Jonathan David Publishers, http://www.jdbooks.com)
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 theater 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.
“Mommy, you must decide. We can take her back into theater and check her out. The chances are that we are going to subject her to unnecessary anesthetic and surgery. The decision is yours…”
“Take her back to theater tonight” I said
“I will get a specialist surgeon to do the surgery” he said.
At 9.30 pm Vic was pushed into theater again. Eleven hours later she was rushed back to ICU. Sunday the 17th of February Vic went back t theater 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 almost 11 years of sheer undiluted hell and misery. I wish there was a way I could make the arrogant fool pay for Vicky’s lost life. I wish I could put him in Vic’s shoes for one day. I wish with every fiber in my body that I could make him give the boys back their mother. I wish my child could be pain-free.
The Prodisc was never removed. The Prodisc is systematically spreading sepsis to Vic’s intestines. Thank God for adhesions.
I digress. The specialist surgeon, Brendan Bebington, which Dr Frank S tried to get to do the surgery that Friday night, wife was in labor His locum was called in. Years later (after surgery maybe 30) we ended up back with Dr Bebington again. He has managed to keep Vic alive for many years.
Brendan calls Vic his “albatross”. He is still consumed by guilt that he wasn’t available to do her emergency surgery… I wonder whether the neurosurgeon ever thinks of her?
I want to reiterate at this point that the Prodisc is an excellent alternative to spinal fusions. Surgeon arrogance is the cause of this disaster! Giving the choice again, we would more than likely opt for the same procedure again. Different surgeon.
When the albatross glides across the skies it is stunningly graceful and beautiful. But when the albatrosses webbed feet touch down on earth it walks clumsily, like a staggering drunk, and becomes the object of ridicule and pity.
One day Vic will soar through the sky, graceful and beautiful. Free from pain and suffering!
The month of September is dedicated to help bring awareness to a very much misunderstood disease, Chronic Pain (C/P). In the USA, Chronic Pain has finally been inducted by the American Medical Association as a disease, with its own diagnostic code even though it encompasses multiple over-lapping conditions and diseases.
As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively. I have argue d with physicians and meet with pain specialists at the pain clinic every month. I have bullied hospital nursing staff. I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…
Yet the levels of Vic’s pain force us to eat humble pie. We have to go back time after time asking and even begging for pain medication.
Tracy at http://ohwhatapain.wordpress.com/ is a passionate advocate bringing awareness about this chronic illness, and this month she has a special project. Please visit Tracy’s blog. Even if you are not directly involved chances are there is someone in your life that is. I have a headache (maybe) once a year. I never have a tummy ache, earache, toe-ache or any ache as a matter of fact. Yet I am a specialist on the subject of pain… I will therefore participate as a caregiver of someone who suffers debilitating chronic pain…..
So from Tracy’s Blog this month and all month-long;
Please answer the following questions:
What condition(s) do you have that have led you to living with chronic pain?
“Frozen abdomen,” is a condition in which repeat surgeries to remove the fibrous bands create so much internal scar tissue that further surgical intervention becomes dangerous. Inflammatory conditions like appendicitis, internal infections and abdominal surgeries can cause the abdominal tissues to bind together, forming scars. Adhesion formation in the abdominal or pelvic cavity can cause debilitating pain, nausea, vomiting, cramping. Patients with intestinal obstruction may experience constipation, diarrhea or a combination of both. In severe cases, adhesions can cause intestinal obstruction, bowel strangulation, complications with childbirth and infertility.
Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” The term literally means “bone that is imperfectly made from the beginning of life.” A person is born with this disorder and is affected throughout his or her lifetime. http://www.oif.org
The condition arises from problems with the adrenal gland itself, a state referred to as “primary adrenal insufficiency”, and can be caused by damage by the body’s own immune system, certain infections or various rarer causes. Addison’s disease is also known as chronicprimary adrenocortical insufficiency, to distinguish it from acute primary adrenocortical insufficiency, most often caused by Waterhouse-Friderichsen syndrome. Addison’s disease should also be distinguished from secondary and tertiary adrenal insufficiency, which are caused by deficiency of ACTH (produced by the pituitary gland) and CRH (produced by the hypothalamus), respectively. Despite this distinction, Addisonian crises can happen in all forms of adrenal insufficiency.
Endometriosis A major symptom of endometriosis is recurring pelvic pain. The pain can be mild to severe cramping that occurs on both sides of the pelvis, in the lower back and rectal area, and even down the legs. The amount of pain a woman feels correlates poorly with the extent or stage (1 through 4) of endometriosis, with some women having little or no pain despite having extensive endometriosis or endometriosis with scarring, while other women may have severe pain even though they have only a few small areas of endometriosis. Throbbing, gnawing, and dragging pain to the legs are reported more commonly by women with endometriosis. Compared with women with superficial endometriosis, those with deep disease appear to be more likely to report shooting rectal pain and a sense of their insides being pulled down. Individual pain areas and pain intensity appears to be unrelated to the surgical diagnosis, and the area of pain unrelated to area of endometriosis.
Endometriosis lesions react to hormonal stimulation and may “bleed” at the time of menstruation. The blood accumulates locally, causes swelling, and triggers inflammatory responses with the activation of cytokines. This process may cause pain. Pain can also occur from adhesions (internal scar tissue) binding internal organs to each other, causing organ dislocation. Fallopian tubes, ovaries, the uterus, the bowels, and the bladder can be bound together in ways that are painful on a daily basis, not just during menstrual periods.
Also, endometriotic lesions can develop their own nerve supply, thereby creating a direct and two-way interaction between lesions and the central nervous system, potentially producing a variety of individual differences in pain that can, in some women, become independent of the disease itself.http:
2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )
Vic has lost her spontaneity. She has to plan every single outing well in advance whether it is a trip to the hairdresser or the doctor, watching Jon-Daniel play cricket or having a cup of coffee with a friend. Vic has lost her ability to live. She merely breathes.
3. Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?
4. What do you miss the most that you feel you gave up because of chronic pain? What do you do now to fill that void?
Playing with her boys…. Vic was never able to play ball or “touches” with the boys. Vic spent a lot of time reading to the boys when they were younger. Now her health and pain is at levels that prohibits any compensatory actions.
5. What have you heard from others that made you feel better?
“It is okay to give up….”
6. Do you feel that people view/treat you differently? How?
People get tired of hanging around people who are always ill and in pain. They avoid Vic. The average person does not know how to handle her raw pain and they are scared that pain or “bad luck” is contagious. Vicky is viewed as someone who is past her “sell by” date.
7. What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)
Vic used breathing techniques earlier in the diseases timeline. Now it is too painful. When Vic has a good day she will do something extravagant like pick the boys up from school and take them for a milkshake. It allows her for a brief moment to believe that her life is normal. It is a form of a coping mechanism. Living the moment and pretending that her life is “normal”