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.
Two weeks after our arrival in Johannesburg we celebrated Vic’s 3rd birthday. Tienie drove my car up and was able to be with us for Vic’s birthday. By her birthday Vic had 38 fractures.
The day of Vic’s birthday Tienie and I went for a drive looking for an ice-cream parlour as a birthday treat for her. Vic was sitting on the backseat. Cars did not have safety belts in 1977… a dog ran across the road, and Tienie swerved out to avoid running it over….. Vic fell off the back seat.
I immediately knew her little arm was broken.
We drove to the nearest hospital. It was Vic’s first visit to an Emergency Room in Johannesburg. There was a long queue of patients waiting to be seen. I completed the paperwork and we sat down for the long wait.
Vic being a toddler we got moved to the front of the queue. A tall, tired looking doctor took down Vic’s medical history.
“Treatment?” he asked…
I remember thinking “Duh….. You know there is no treatment.” But, then a spark of hope flamed up and I asked “Do you know of treatment for Osteogenesis Imperfecta?”
“No” he said
“Vicky is having experimental homeopathic treatment. The physician treating her is Professor Majorkenis” I said
He looked at me and took out a red pen from his pocket. In huge red letters he wrote “Homeopathic treatment” across the page. He drew two lines under the words…
In a terse voice he instructed the nurse to take us through to X-rays. There was no radiologist on duty, and we had to wait for the call-out radiologist to arrive. I eventually went through to the ER and asked the doctor whether Vic could have something for the pain. It was 2.5 hours after the event, and she was crying from the pain.
“She cannot have anything for pain. She may have to go to the theatre. But then you know that don’t you?” he asked in a very sarcastic tone of voice!
I went back to X-rays seething but knowing that what he said was true. If the bone had dislocated Vic would have to go to theatre.
By the time I got back to X-rays the radiologist had arrived and was busy setting up the machine. Vic’s cries of pain are still etched into my heart and brain when her little arm was positioned on the table. Tears ran down my cheeks whilst I kept telling her that if she kept still it would be over soon.
The X-ray showed 3 clean fractures. No surgery would be necessary.
We went down to the ER, and the doctor started applying the plaster-of-paris to Vic’s arm. She was sobbing with pain.
I absolutely lost it.
“If you have a problem with the fact that my child is having homeopathic treatment you take it out on me. “
He just fixed his tired eyes on me and said nothing.
“Do you know what it feels like when your child is sentenced to death and there is no appeal system? Western traditional doctors, like you, have offered us no hope what so ever! This Homeopath is prepared to TRY. That is a hell of a lot more than what doctors like you are prepared to do! ”
His eyes were big and he had stopped working on Vic’s arm by then.
“Now, if you have a problem treating my child with the care and dignity that she deserves I suggest you get someone else in here to take care of her!”
He drew up a syringe with some pain medication and said “This will just sting a little, but it will help for the pain…”
He gave it a couple of minutes and then completed the plaster-of-paris process.
Without a word of apology he wrote a prescription for pain medication. He curtly said “Take her to her orthopod in three weeks” and walked out of the cubicle…
I lodged a formal complaint against him the following day, but nothing ever came of it.
Was I surprised? Hell no! Homeopathic or alternative medicine was satanic in 1977 in South Africa! We would go to hell for it any way…
On Vic’s 3rd birthday her fracture count went up to 41…
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
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
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…
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…
On our way to Hospice Jon-Daniel sat with his arms crossed muttering “I don’t need to see anyone” under his breath. “I am like you Oumie. We don’t talk…”
“Yeah” I said. “But I really think the time has come for us to talk to someone. Besides it is part of the Hospice thing. We have to do it!”
“The whole day I was thinking of shrink jokes” Jared said. “Do you think I can ask him ‘how does this make you feel?‘”
We all laughed.
“Guys if we don’t talk to the counselor we may have to come back…. Let’s answer all the questions and get it over and done with….” I cautioned
Alan is a short young man. I think he is in his early thirty’s. We shook hands and he asked us how we wanted to “do it?”
The boys went in on their own. I sat in the waiting room saying a little prayer that they would open up to this professional stranger who is an expert in dealing with death. Thirty minutes later I was invited in.
“The boys tell me they are coping well. They don’t see the reason for seeing me…..What do you think? Are you guys coping?”
I was truly taken aback. “Yes, I think we are coping. ”
“So Tersia, why do you think the boys need to see me?”
I did not speak for a couple of minutes. I was grappling with my brain as to how much I should tell this stranger.
“I think the emotional roller coaster is getting to us. We have said our goodbyes so many times and Vic always bounces back!” I eventually said.
“Yes, Jon-Daniel said so” Alan replied.
“I worry that the boys live in a home where death lingers. There is not enough laughter in our home. It saddens me when they stand next to their Mom’s bed and I see the helplessness in their eyes!” I mused
“I get impatient with Vic. When she has half a breath she will organize a party. When the pain medication works she will not pace herself. She will hurt herself and then I have to pick up the pieces. Sometimes I am scared that her suffering will not end. ” I continued.
“What type of party will she organize?” Alan asked.
The boys and I laughed!
“It is only a figure of speech….” we explained. “She will try and do things with the boys and hurt herself.”
“What type of things?” Alan asked
“Drive and take us for a milkshake” Jared replied.
“Mom forgets things and she thinks we are all against her… Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.
“It is not about the final moments. It is not the final words or even the final disagreement. It is about the life and all the years of loving before death and dying…. You must not ever blame yourself for anything. Life is hard for all of you right now. It is okay to be scared and to get irritated. You must tell your Mom how you feel. I am not saying you must back-chat. What I am saying is that you must tell your Mom how her actions and illness makes you feel. The household consists of more than one person…. You all have the right to living…”
The boys asked to see Alan for another session…. Thank you God for another angel!
Different strokes for different folk… What pain medication works for one type of pain does not work for a different type of pain. Simple example: – Morphine does not relieve toothache or headaches….. It relieves bone pain.
Medicines can often help control chronic pain. Many different drugs, both prescription and non-prescription, are used to treat chronic pain. All these medicines can cause side effects and should be taken exactly as they are prescribed. In some cases, it may take several weeks before medicines work to reduce pain. To avoid dangerous drug interactions, tell your doctor all the medicines you are taking (including herbal and other complementary medicines).
Medication Choices
You will likely be given medicines that cause the fewest side effects first (such as acetaminophen) to treat chronic pain. The dose will be increased or the medicines will be changed as needed. Medicines used to treat chronic pain include the following:
Nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin,ibuprofen (Advil, for example), ketoprofen, and naproxen (Aleve, for example). Always take NSAIDs exactly as prescribed or according to the label. Do not take a non-prescription NSAID for longer than 10 days without talking to your doctor.
Corticosteroids, such as prednisone. Sometimes, steroids are injected around the base of the spine to relieve low back pain (epidural steroid injections).
Pain relievers that are applied directly to the skin (topical analgesics), such as EMLA cream or a lidocaine patch (Lidoderm).
Capsaicin, a naturally occurring substance that is found in chili peppers and is used to make certain topical analgesic creams.
Cooling spray. This involves using a cooling spray (such as Biofreeze) directly on the skin. This may be repeated several times.
Creams or gels containing medicines or combinations of medicines. The cream or gel is rubbed directly on the painful area. Some of these creams or gels can be made at the pharmacy according to your doctor’s directions.
Other therapies that may be used to treat chronic pain include:
Nerve block injections. An anesthetic is injected into the affected nerve to relieve pain. The anesthetic may relieve pain for several days, but the pain often returns. Although nerve blocks do not normally cure chronic pain, they may allow you to begin physical therapy and improve your range of motion.
Epidural steroid injections (injecting steroids around the spine). Although these injections have been used for many years and may provide relief for low back or neck pain caused by disc disease or pinched nerves, they may not work for everyone.
Vic’s pain medication as at 4.8.2012 (Transcribed from medication received from Pain Clinic
TABLET
NO OF TABLETS
PER DAY
TRAMADOL 50MG
4
3 TIMES PER DAY
AUSTRELL PARACETAMOL 500MG
2
3 TIMES PER DAY
STILPAYNE
2
3 TIMES PER DAY
CYMBALTA 60
2
1 TIMES PER DAY
NEURONTIN 100MG
6
3 TIMES PER DAY
SRM RHOTARD 400MG (MORPHINE)
2 TIMES PER DAY
ELTROXIN .1MG
1
IN MORNING
BACTRIM
1
3 X PER DAY
LOSEC 20MG
1
IN MORNING
STEMITIL 5MG
1
2 TIMES PER DAY
MORPHINE SYRUP
25MG/5ML
AS NEEDED
JURNISTA 4MG
1
1 TIMES PER DAY
PANAFORTE
1
2 TIMES PER DAY
DEGRONOL
2
2 TIMES PER DAY
This is scary. The amount of opioids Vic takes would certainly kill most people. Is Vic an addict? Certainly not!!
Opioids work by mimicking the body’s natural painkillers known as endorphins. They control pain by blocking pain messages to the brain. Because morphine is an opioid, some people worry about becoming addicted. When you take an opioid to control pain, it is unlikely that you will become addicted. The body uses the drug to control pain, not to give you a ‘high’ http://cancerhelp.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/morphine
I read a heart rendering account of chronic pain and the fear of being treated as an addict written by Tracy Rydzy, a Licensed Social Worker. http://ohwhatapain.wordpress.com/being-treated-like-an-addict/ Tracy writes a heart rendering blog on chronic pain and prejudge that she faces every day. Tracy writes: “I may be on medication, but I am intelligent and I know what is going on. Please understand that I didn’t choose this for myself. I don’t want these damn pills, but I have no other choice right now as I have exhausted my other options for pain relief. Don’t hold my condition against me. I understand the pen is mightier than the sword, so I can’t even ask to change dosages, I can’t request anything different, I certainly can’t be rude in any way (regardless of how you treat me) and I can’t question you because you hold my ability to move and get out of bed in your little prescription pad.”
We are so fortunate that we have access to The Pain Clinic run by very sympathetic professionals. We do not have a problem getting a prescription for the medication. Our problem lies in the fact that from time to time the pharmacy of the Helen Joseph Clinic runs out of Morphine both in tablet or syrup form. Sometimes we are able to get a private script from the Pain Clinic and other times I have to go back the next day, sit in a queue again, get the script and then get it filled privately. Try and get 4.2 litres of morphine syrup from a pharmacy…. Sometimes I am busy and then find it easier to pay a doctor for an appointment to get a script. We may get a script for 1 litre….
Fortunately Vic’s eldest sister is a pharmacist and we are known to the staff at that particular pharmacy. The times we have tried to use other pharmacies (because they do not have morphine in stock) we are treated with suspicion.
“Many people confuse physical dependence, which is the occurrence of withdrawal when the drug is stopped, with addiction. Withdrawal is a physical phenomenon that means that the body has adapted to the drug in such a way that a “rebound” occurs when the drug is suddenly stopped. The kind of symptoms that occur include rapid pulse, sweating, nausea and vomiting, diarrhoea, runny nose, “gooseflesh,” and anxiety. All people who take opioids for a period of time can potentially have this withdrawal syndrome if the drug is stopped or the dose is suddenly lowered. This is not a problem as long as it is prevented by avoiding sudden reductions in the dose.
Physical dependence is entirely different from addiction. Addiction is defined by a loss of control over the drug, compulsive use of the drug, and continued use of the drug even if it is harming the person or others. People who become addicted often deny that they have a problem, even as they desperately try to maintain the supply of the drug.
Addiction is a “bio psychosocial” disease. This means that most people who become addicted to drugs are probably predisposed (it is in the genes) but only develop the problem if they have access to the drug and take it at a time and in a way that leaves them vulnerable. A very large experience in the treatment of patients with chronic pain indicates that the risk of addiction among people with no prior history of substance abuse who are given an opioid for pain is very low. The history of substance abuse doesn’t mean that a patient should never get an opioid for pain, but does suggest that the doctor must be very cautious when prescribing and monitoring this therapy.
People with chronic pain should understand the difference between physical dependence and addiction. Unreasonable fears about addiction should not be the reason that doctors refuse this therapy or patients refuse to take it.
Tolerance to opioid drugs occurs but is seldom a clinical problem. Tolerance means that taking the drug changes the body in such a way that the drug loses its effect over time. If the effect that is lost is a side effect, like sleepiness, tolerance is a good thing. If the effect is pain relief, tolerance is a problem. Fortunately, a very large experience indicates that most patients can reach a favorable balance between pain relief and side effects then stabilize at this dose for a long period of time. If doses need to be increased because pain returns, it is more commonly due to worsening of the painful disease than it is to tolerance. “
Vic is “embarrassed” the amount of medication she needs to take to control her pain. She is oversensitive to the point of being paranoid about being called an addict.
Is my child an addict? Hell no!! Does it worry me that she needs increasing amounts of medication to handle the pain associated with the deterioration of her little body? Hell no!! Whatever it takes for one pain-free moment in her little life! Tracy to you and all the other chronic pain sufferers out there – I wish you all a sympathetic doctor, nurse and pharmacist!
Today was a day out of hell for Vicky. She is deadly pale – she actually has a ghost like appearance. She was so ill that she was unable to take pain medication and now her pain is out of control.
If I am having a hard time with this how must this poor child feel? HOW CAN SHE CARRY ON???
Jared has withdrawn completely! Rene, Jared’s councillor managed to speak to Jon-Daniel today. He is in total denial! He said “My Mom is a miracle. She was not supposed to live past the age of 12 The doctors said she would die when she fell pregnant with my brother and me and she is still alive. Lots of times they said she would die…She will get better again”
At first I was filled with disbelief and then I realized with a shock that Jon-Daniel is right! A couple of weeks ago I bumped into an ex-business partner. When he inquired after Vic’s health I said that she was desperately ill and that I thought that the end was near. Frik laughed and said “that is what you said 15 years ago when she was pregnant with her eldest son…”
Reading some of the pre-blog stuff that I wrote and when I look in my Bible there are markings “Vic ICU“, “Vic critical”, etc etc etc.
Vic has been on death row all her life. I know we start dying the day we are born but for most of our lives we are oblivious to the fact. At funerals we may think of our own mortality but for the rest of it we think we are invincible. Jon-Daniel thinks his Mom is invincible.
A colleague asked me earlier today what he should pray for when he prays for Vic. I replied “Mercy”. When I got home tonight and I saw this tiny, pitiful little bundle doubled over from the pain, I panicked and thought to myself “What if Jon-Daniel is right and she gets better again?”
If there is a God He will release my poor child from this dreadful life! It is an inhuman existence that not even an animal deserves. If Vic had been an animal she would have been put out of her misery a long time ago!! God does not have to heal her. He does not even have to take all her pain away. If she could just have SOME quality of life…some pain free time with her boys… Please God hear my prayer!
Vic's Final Journey 