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.
My poor child had a horrible night. The pain was under control, but her arm still throbbed, and she was restless. I was busy with some Christmas gifts. I tried to go to sleep, but gave it up as a bad job. So I wrote a post. At 2am this morning I had just “published” when Vic rang the intercom.
The intercom is her 911
I ran down the passage knowing that my poor child had vomited again. The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets. The food had not digested at all. She was shivering and crying.
I cleaned up whilst Vic showered.
“I am sorry Mommy. I am so sorry Mommy”… Vic sobbed.
“I can’t do this anymore Mommy. I don’t want to live like this anymore….”
I eventually got into bed at 5am. Three hours sleep used to be enough sleep when I was younger. I think I am getting old. I need more than 3 hours. Maybe it is time to look at a night nurse…..
Hospice called early this morning. The antibiotics have been changed to IM injections. We cannot put up an IV drip. Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained. Vic refused. “No more hospitals. Mommy you promised…”
Monday morning Dr Sue will come to the house and do the procedure here.
Yesterday I spoke with a wonderful young man, Marchelle. I was privileged to have worked with Marchelle worked for a couple of years. Unfortunately we lost a large contract and had to go our separate ways.
Marchelle has a pure heart. He is selfless and one of the very few people I trust with every fibre of my being. Marchelle has never let me down.
Marchelle told me he is following my blog. He asked me whether I thought the situation is truly as bad as Hospice say it is. I said I did.
He asked “what is different this time? You have been told so many times that Vic was dying, and then she bounces back…”
I started giving him the facts; Vic is in renal and hepatic failure… This time she cannot bounce back. Organ failure is organ failure…. Talking to him I thought “Marchelle is right! Why am I giving up this time? I have NEVER given up on my child, and I will not give up now.”
I walked into Vic’s room and stood in the door looking at my beautiful little girl sleeping. I am so tired that I am allowing the negativity of the situation to get to me. It was however only at 4:00 am that the reality of Vic’s situation re-settled around my heart like a lead jacket – I know my child has had enough.
Marchelle said he prays for us every day, and I believe him.
This morning Vic took her precious boys to pick up their report cards. Both Danie and I said we would take them. Vic very politely refused. She wanted to take her boys. She wanted to be first to see their marks. Maybe for the last time…
She was absolutely delighted with their marks. The boys had worked hard and deserve every mark they received. I wonder whether the boys will remember in the years to come that their Mommy got out of her sick- bed to go with them to collect their 2012 report cards.
We are so proud of them. They are brave kids.
On Sunday we will celebrate my birthday. On the 24th we will have our first Christmas dinner with Lani, Tom and all their kids. Simone still believes in Santa! On the 25th we will go to Church. On the 26th we will celebrate Jared’s birthday. On the 27th we will start planning our New Year celebrations.
Forward planning is “The power of positive thinking”…
Sue saw Vic this morning. Her liver is very distended and exerting pressure on the right lung. I now have to use her little arms and legs as injection sites. I HATE injecting her in the legs. The doctor fears that she will develop abscesses on her bum. The entire derriere area is full of lumps and bruises. When I inject her the injection site becomes “lemon-peely”. The immediate area swells and becomes hard. Sometimes there is a fair amount of bleeding or serum loss. Her tissue is POOR!!!
I discussed various central line options with Sue. Vic refused point-blank to even consider it. Vic has been mainlined so many times. She always asked the anaesthetists to not tape her hair to the central line…. Vic went into septic shock from a CVV, had the needle inserted into an accessory vein and had to be returned to theatre for the removal of the needle and the cauterization of the puncture wound in the vein…. Due to her poor tissue and bleeding tendencies it took two hours!
So we discussed the way forward.
Sue gave us a script for Pethidine. We will alternate the morphine and Pethidine six-hourly. The poor pharmacist…. She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.
Now it is only a matter of time. Vic’s organs are slowly shutting down. My child is gently being eased into death.
The entire day it echoed through my mind “we cannot stop this. It is happening”
Vic is calm and serene.
“Next year my mom and I are going to Italy” she told Sue today.
“Then I can die…”
“We will find a way my love” Sue said…
“It is closer that she realises” Sue said to me at her car
Sr Siza examined Vic today. She phoned Dr Sue who will be in tomorrow morning. She also brought a script with for Dalacin antibiotics. The cellulitis has spread to all three the subcutaneous sites.
Siza expressed her concern at Vic’s decline…
Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”
That statement really shook me. Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions… I have never really considered living without my child.
Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters. We are hoping that they will “host” our Hospice at their premises.
The CEO knows Vicky and the boys. Jared was confirmed in his church earlier this year.
I shared with them how difficult it was to get a terminally ill person into a Hospice Program and that 95% of the dying population die in pain. Vernon (CEO) quietly listened to us and explained how difficult fundraising is. Christians are tight with their money…
Vernon then shared the following with us.
“In 2007 I was driving home from a meeting when I felt this urgent need to see Vicky. I knew she was in hospital as she was on the prayer list. I drove to the Donald Gordon (Hospital) and was directed to the ICU. The nurses welcomed me although it was way past visiting time.”
“Pray for her. We are switching the machines off tomorrow morning…” they said.
“I stood next to her bed, raised my arms and prayed that God would spare Vicky for her little boys. I stood next to a dead person that night. Two days later I heard that Vicky did not die when the machines were turned off…”
I just stared at him. I was speechless… I had no idea! It was the first time I had ever heard the story!
In June 2007 Vic had developed ARDS (Acute Respiratory Distress Syndrome) after a series of operations trying to close up an abdominal fistula. Her body was excreting up to 7 litres of faecal matter a day and she had every superbug the ICU could offer. On the Tuesday Vic went into respiratory failure and was ventilated. I was talking to her when the doctors rushed us out of ICU and put her onto the ventilator. By the Thursday her kidneys and liver had started shutting down.
My BFF, Gillian drove 350 kilometres to be with me. On the Thursday there was absolutely no sign that Vic could or would recover. Vic had a DNR and a living will that she had provided the hospital.
That evening one of the ICU doctors, Liam, hugged me and said “Mommy, Vic is tired. You must let her go…”
Gill, Leeann (Vic’s friend) and I went home after visiting hour to talk to the boys. They were already in bed when we arrived home. We sat with them
“Guys, you know how ill Mommy has been….Mommy’s lungs are not able to work on their own. Mommy’s kidneys and liver is also not working that well anymore. The doctors feel that Mommy will not be able to breathe without the machines and that Mommy has suffered too much. They think it will be better for Mommy to be taken off the machines…”
Jared quietly started to cry. Jon-Daniel was stoic. Jared was 10 years old and Jon-Daniel 8 years old.
“What will happen with us Oumie” Jon-Daniel asked.
“Sweetie, Oumie and Oupie will ALWAYS be here for you. This is your home.”
Jared cried himself to sleep. Jon-Daniel just clung to me. The three of us shared a bed that night.
The next morning early Gill, Lee and I set off to hospital. When we arrived I said “I am not going into that hospital until I have prayed in the Chapel.”
The three of us prayed and it was with absolute certainty that I KNEW Vic would not die that day.
Family and friends drifted in and out of the waiting room the whole day. My minister came and prayed for my child. Everyone said goodbye.
That afternoon Danie and I were allowed to see Vic. The “invasive” ventilator had been disconnected and she had a mask-like ventilator covering her face. It was a grotesque sight.
Danie held her little hand and his tears dripped onto her arm.
“Oh sweetie” he said, the sorrow and pain raw in his voice.
Vic opened her eyes and said “Daddy”….
Three days later Vic was discharged from ICU….. It was not her time.
Today I looked at her and fear struck at my heart. My child is slowly slipping away. Her little body is tired of the pain. Her little organs are enlarged and diseased. Her bones weak….
And the realisation hit home…. We need another miracle.
The subcutaneous driver is down. By this morning it was obvious that Vic’s tissue was just not holding up.
On Friday morning I removed and repositioned the driver. Serum leaked out of the syringe hole for almost two days. The area is inflamed, hot to the touch, swollen and painful. Cellulitis has struck! Yesterday evening I repositioned the driver again and this afternoon I removed it. So I will now administer the 150mg of morphine and the 60 ml Stemitil IM. Vic’s derriere is black and blue and lumpy from the injections.
Where to from here? How are we going to control this poor child’s pain? I can only think that they will have to fit a central line… Will they do it? She will have to go into theatre for that! There is absolutely no way I would allow the procedure without sedation! Central lines are very susceptible to infection and sepsis.
Poor baby. She is so ill.
Today I said to my BFF, Gillian, that it is almost as if, now the decision has been made regarding “her” Hospice, she is at peace. I sat next to her and thought to myself “I wonder if she will make Christmas?” But then I thought to myself “Wait a minute…This is Vic…She bounces back!”
Tomorrow her doctor will come and see her, she will go onto a course of antibiotics and bounce back again. Then we will decide how to deal with her pain…
There are several types of central venous catheters:[1]
Non-tunneled vs. tunneled catheters
Non-tunneled catheters are fixed in place at the site of insertion, with the catheter and attachments protruding directly. Commonly used non-tunneled catheters include Quinton catheters.
Tunneled catheters are passed under the skin from the insertion site to a separate exit site, where the catheter and its attachments emerge from underneath the skin. The exit site is typically located in the chest, making the access ports less visible than if they were to directly protrude from the neck. Passing the catheter under the skin helps to prevent infection and provides stability. Commonly used tunneled catheters include Hickman catheters and Groshong catheters.
A port is similar to a tunneled catheter but is left entirely under the skin. Medicines are injected through the skin into the catheter. Some implanted ports contain a small reservoir that can be refilled in the same way. After being filled, the reservoir slowly releases the medicine into the bloodstream. An implanted port is less obvious than a tunneled catheter and requires very little daily care. It has less impact on a person’s activities than a PICC line or a tunneled catheter. Surgically implanted infusion ports are placed below the clavicle (infraclavicular fossa), with the catheter threaded into the right atrium through large vein. Once implanted, the port is accessed via non-coring “Huber” needles inserted through the skin. The health care provider may need to use topical anesthetic prior to accessing port. Ports can be used for medications, chemotherapy, TPN, and blood. As compared to CVC or PICC catheters, ports are easy to maintain for home-based therapy.
Ports are typically used on patients requiring only occasional venous access over a long duration course of therapy. Since the port must be accessed using a needle, if venous access is required on a frequent basis a catheter having external access is more commonly used.
PICC line
A peripherally inserted central catheter, or PICC line (pronounced “pick”), is a central venous catheter inserted into a vein in the arm rather than a vein in the neck or chest.
Technical description
Triluminal catheter
Depending on its use, the catheter is monoluminal, biluminal or triluminal, dependent on the actual number of lumens (1, 2 and 3 respectively). Some catheters have 4 or 5 lumens, depending on the reason for their use.
The catheter is usually held in place by an adhesive dressing, suture, or staple which is covered by an occlusive dressing. Regular flushing with saline or a heparin-containing solution keeps the line patent and prevents thrombosis. Certain lines are impregnated with antibiotics, silver-containing substances (specifically silver sulfadiazine) and/or chlorhexidine to reduce infection risk.
Specific types of long-term central lines are the Hickman catheters, which require clamps to make sure the valve is closed, and Groshong catheters, which have a valve that opens as fluid is withdrawn or infused and remains closed when not in use. Hickman lines also have a “cuff” under the skin, to prevent bacterial migration[citation needed] and to cause tissue ingrowth into the device for long term securement.
Indications and uses
Indications for the use of central lines include:[2]
Monitoring of the central venous pressure (CVP) in acutely ill patients to quantify fluid balance
Central venous catheters usually remain in place for a longer period of time than other venous access devices, especially when the reason for their use is longstanding (such as total parenteral nutrition in a chronically ill patient). For such indications, a Hickman line, a PICC line or a portacath may be considered because of their smaller infection risk. Sterile technique is highly important here, as a line may serve as a porte d’entrée (place of entry) for pathogenic organisms, and the line itself may become infected with organisms such as Staphylococcus aureus and coagulase-negative Staphylococci.[citation needed]
Triple lumen in jugular vein
Chest x-ray with catheter in the right subclavian vein
The skin is cleaned, and local anesthetic applied if required. The location of the vein is then identified by landmarks or with the use of a small ultrasound device. A hollow needle is advanced through the skin until blood is aspirated; the color of the blood and the rate of its flow help distinguish it from arterial blood (suggesting that an artery has been accidentally punctured), although this method is inaccurate.[citation needed] Ultrasound probably now represents the gold standard for central venous access and skills, within North American and Europe, with landmark techniques are diminishing.[3][4]
The line is then inserted using the Seldinger technique: a blunt guidewire is passed through the needle, then the needle is removed. A dilating device may be passed over the guidewire to slightly enlarge the tract. Finally, the central line itself is then passed over the guidewire, which is then removed. All the lumens of the line are aspirated (to ensure that they are all positioned inside the vein) and flushed.[citation needed] A chest X-ray is typically performed afterwards to confirm that the line is positioned inside the superior vena cava and, in the case of insertion through the subclavian vein, that no pneumothorax was caused as a side effect. Vascular positioning systems can also be used to verify tip placement during insertion without the need to a chest X-ray, but this technique is not yet a standard of practice.
Videos are available demonstrating placement of a central venous catheter without[5] and with ultrasound guidance.[6]
Complications
Central line insertion may cause a number of complications. The benefit expected from their use therefore needs to outweigh the risk of those complications.
Pneumothorax
Pneumothorax (for central lines placed in the chest); the incidence is thought to be higher with subclavian vein catheterization. In catheterization of the internal jugular vein, the risk of pneumothorax can be minimized by the use of ultrasound guidance. For experienced clinicians, theincidence of pneumothorax is about 1.5-3.1%. Some official bodies, e.g. the National Institute for Health and Clinical Excellence (UK), recommend the routine use of ultrasonography to minimize complications.[7]
All catheters can introduce bacteria into the bloodstream, but CVCs are known for occasionally causing Staphylococcus aureus andStaphylococcus epidermidissepsis. The problem of central line-associated bloodstream infections (CLABSI) has gained increasing attention in recent years. They cause a great deal of morbidity and deaths, and increase health care costs. Historically, a small number of CVC infections were considered an acceptable risk of placing central lines. However, the seminal work by Dr. Peter Pronovost at Johns Hopkins Hospital turned that perspective on its head. Additionally, the Institute for Healthcare Improvement (IHI) has done a tremendous amount of work in improving hospitals’ focus on central line-associated bloodstream infections (CLABSI), and is working to decrease the incidence of this particular complication among US hospitals.
The National Patient Safety Goals NPSGs and specifically NSPG 7.04 address how to decrease infections.[8] The NSPG 7.04 has 13 elements of performance to decrease CLABSIs.
The 13 Elements of Performance (EPs):
EP 1 & 2 deal with educating staff and patients about Central Vascular Catheters and their potential complications
EP 3 specifically directs facilities to implement policies and practices to reduce CLABSI
EP 4 & 5 are about how to perform surveillance for Central-Line Associated Bloodstream Infections (CLABSIs)
EP 6-13:
– Institute for Healthcare Improvement (IHI) bundle
4. Selection of Optimal site for Central venus Catheter (CVC)
5. Daily review of ongoing need for CVC
– Disinfection of intravenous access ports before use
National Patient Safety Goals require documentation of a checklist for CVC insertion and Disinfection of intravenous (IV) access ports before use (scrub the hub). Some literature has suggested the use of a safer vascular access route – such as intraosseous (IO) vascular access – when central lines are not absolutely necessary (such as when central lines are being placed solely for vascular access). Infection risks were initially thought to be less in jugular lines, but this only seems to be the case if the patient is obese.[9]
If a patient with a central line develops signs of infection, blood cultures are taken from both the catheter and from a vein elsewhere in the body. If the culture from the central line grows bacteria much earlier (>2 hours) than the other site, the line is the likely source of the infection. Quantitative blood culture is even more accurate, but this is not widely available.[10]
Generally, antibiotics are used, and occasionally the catheter will have to be removed. In the case of bacteremia from Staphylococcus aureus, removing the catheter without administering antibiotics is not adequate as 38% of such patients may still develop endocarditis.[11]
To prevent infection, stringent cleaning of the catheter insertion site is advised. Povidone-iodine solution is often used for such cleaning, but chlorhexidine appears to be twice as effective as iodine.[13] Routine replacement of lines makes no difference in preventing infection.[14]
Rarely, small amounts of air are sucked into the vein as a result of the negative Intra-thoracic pressure and insertion technique. Valved insertion devices can reduce this risk.[citation needed] If these air bubbles obstruct blood vessels, this is known as an air embolism.
Hemorrhage (bleeding) and formation of a hematoma (bruise) is slightly more common in jugular venous lines than in others.[9]
Arrhythmias may occur during the insertion process when the wire comes in contact with the endocardium. It typically resolved when the wire is pulled back.[citation needed]
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”
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…
The liver works with the endocrine system to regulate nutrients in the body and remove toxins. An enlarged liver means that it is endangered due to disease or other factors, which can lead to toxic shock. The proper medical term for an enlarged liver is hepatomegaly.
A healthy liver helps fight infections and filters toxins from the blood. It also helps to digest food, store nutrients for future needs, manufactures protein, bile and blood-clotting factors and metabolizes medications. A healthy liver has the ability to grow back, or regenerate, when it is damaged. Anything that prevents the liver from performing these functions – or from growing back after injury – can severely impact health and very possibly length of life.
The initial symptoms of liver failure are often ones that can be due to any number or conditions. Because of this, liver failure may be initially difficult to diagnose. Early symptoms include:
Nausea
Loss of appetite
Fatigue
Diarrhea
However, as liver failure progresses, the symptoms become more serious, requiring urgent care. These symptoms include:
Fatty or enlarged livers are caused by infections, certain medications, general toxicity, hepatitis, autoimmune disorders, metabolic syndrome and genetic disorders that affect the liver. Abnormal growths, such as cysts or tumors, impact liver size. Blood-flow symptoms, such as heart failure, can cause liver enlargement. Conditions also exist that restrict blood to the liver veins, such as hepatic vein thrombosis.
An enlarged liver indicates a problem with the liver itself or your overall endocrine system. If you suspect that you have any of these symptoms, you should seek medical attention. The causes of an enlarged liver vary in their severity and complexity. Only a medical professional can make the proper diagnosis for the cause of an enlarged liver.
If not addressed and stopped in the earlier stages, the damage resulting from these multiple causes leads to scarring of the liver, known as cirrhosis, where large portions of the organ begin to lose their capacity to function or regenerate.
Treatment of patients with liver failure is specific to the unique symptoms and conditions experienced by each individual. Any patient with liver damage will be asked to abstain from alcohol. For patients with cirrhosis and end-stage liver disease, medications may be required to control the amount of protein absorbed in the diet. If there has been a build-up of toxins, particularly high ammonia levels, medication will be offered which lowers these levels. Low sodium diet and water pills (diuretics) may be required to minimize water retention. In those with large amounts of ascites fluid, the excess fluid may have to be occasionally removed with a needle and syringe (paracentesis). Using local anesthetic, a needle is inserted through the abdominal wall and the fluid withdrawn. Sometimes surgery is performed to minimize portal hypertension and lower the risk of gastroesophageal bleeding.
At this point, a person may become a candidate for liver transplant of part or all of the liver. Transplant success has improved in recent years with 1-year patient survival rates of up to 87%. Due to the severe organ shortages, patients who are listed for liver transplantation have an estimated wait time of 1 to 3 years, depending on blood type and illness severity. Many patients are never able to be considered for transplants due to severity of their disease, other medical problems, or social considerations such as ongoing alcohol use or non-compliance with treatment recommendations. Others die while waiting for a transplant as their disease continues to progress.
The impact of these various symptoms and conditions on suffering and quality of life are profound, and ESLD patients can benefit greatly from hospice and palliative care. Even, when an ESLD patient is on a transplant list, this does not automatically prevent them from being on hospice services.
According to Medicare/Hospice guidelines, patients will be considered to be in the terminal stage of liver disease (life expectancy of six months or less) and eligible for hospice care, if they meet the following criteria (1 and 2 must be present; factors from 3 will lend supporting documentation):
1. The patient should show both a and b:
a. Prothrombin time prolonged more than 5 seconds over control, or International Normalized Ratio (INR)> 1.5
b. Serum albumin <2.5 gm/d1
2. End stage liver disease is present and the patient shows at least one of the following:
a. ascites, refractory to treatment or patient non-compliant
b. spontaneous bacterial peritonitis
c. hepatorenal syndrome (elevated creatinine and BUN with oliguria (<400ml/day) and urine sodium concentration <10 mEq/l)
d. hepatic encephalopathy, refractory to treatment, or patient non-complaint
e. recurrent variceal bleeding, despite intensive therapy
3. Documentation of the following factors will support eligibility for hospice care:
a. progressive malnutrition
b. muscle wasting with reduced strength and endurance
c. continued active alcoholism (> 80 gm ethanol/day)
d. hepatocellular carcinoma
e. HBsAg (Hepatitis B) positivity
f. hepatitis C refractory to interferon treatment
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 SagaBreaking 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…
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.
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.
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!
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.
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.
Vic's Final Journey 
