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.
Tomorrow, on the 31st of August, we will once again celebrate Vic’s life! Every year, for the past 10 years, we expected it to be Vic’s last birthday. Today I know that Vic will live forever. She will continue to fight for another day, week, month, year…. Tomorrow we celebrate life!!
Tonight I sat doing Vic’s medication for the next 24 hours and I popped an extraJurnista into tomorrow morning’s tablets. Janis Ian sings “and in the winter extra blankets for the cold…” and I sing ” and on your birthday extra tablets for the pain….. My gift to Vic an extra tablet so she can a better day.
So, on the eve of my child’s birthday I am sitting thinking of what my prayer for Vic would be if I still knew how to pray.
I would pray for adequate pain relief. I would pray for some quality of life time for Vic with her boys. I would pray for Vic to have financial independence. I would pray for Vic to have peace of mind. I would pray that Vic would have enough faith in her dad and I to know it is okay to let go…the boys will be safe with us.
I do thank God that Vic is still alive. I thank God for Dr Jabber Hussain and Jurnista. I thank God for Vic’s incredible boys. I thank God for the brave decision that Vic made not to have further surgery. Above all, I thank God that Vic is home.
Tomorrow Vic will have a busy day. She has a 08:00 breakfast appointment with Lee, a 10:00 manicure booked by Esther, afternoon tea (at home) with Robbie Cramp and then dinner at a restaurant of her choice with the boys and us. I know it will take a superhuman effort but I have “rests” scheduled for the birthday girl in between events.
What is a relatively quiet day for us is a marathon for anyone as ill as Vic. I know that she will try so hard to survive the birthday and the party day. Somehow I don’t think she will manage it all. I just hope that she has a good day so she can spend some constructive time with her boys. They will need to remember this as a good birthday in years to come…..
On Saturday we will celebrate all the August/September birthdays. Vic on the 31st of August, Henk on the 2nd of September and Tom on the 4th of September…. I hope Vic will be able to handle two busy days in a row. Maybe the birthday high will carry her through it!
We have a family tradition of doing “birthday eulogies”. Everyone present gets to say something nice about the birthday person. Over the years I have told Vic how brave she is, what a fighter she is, how beautiful she is. This year I will I will merely thank her for being here!
Vic has been doing so well. Ever since the arm surgery she has coped well with the arm and the pain. The Jurnista is truly a miracle drug!
On Thursday Vic went out for coffee. She drove her own little car… it was less than 2 kilometers but she drove! She was exhausted when she got home but she did not “crash”! She fractured another vertebrae on the 12th of August (http://wp.me/p2rPrS-bA ) but she is coping with the pain! She handled an emotional crisis well on Saturday and today she dished up her own lunch! It is remarkable that she is doing so well. Two months ago I was at my wits end. Vic was totally reliant upon me for everything! Due to the Jurnmista she has started taking back her life… Slowly but surely!
We have started planning our December vacation. Danie and I will take the boys and Henk to Germany for a two week vacation. Vic want’s to spend a week on her own and I want her to go to a Spa for the 2nd week… In the European Spring Vic and I are going to Italy!!!!
Today was a terrible day. The pain Clinic was crazy! I have never seen so many people waiting to see the Professor.
When you are sitting in a queue for hours with people you meet every 28 days, you get to know the fellow patients. But today there were two new faces. An attractive young woman and her tired looking mother. They appeared to not be very cultured or refined people. The young woman was the sister of a patient who, like Vic, is too ill to come to the Pain Clinic. His sister (S) and mother (M) are his proxy’s.
S became very agitated because she was told – “no appointment, no consultation, no prescription”. She actually used some choice language! She kept saying “It is not for me. I actually don’t care….”
She however bullied the nurse into agreeing to allow the unscheduled appointment. But it was a long wait and S, I suspect, is a little ADD. She was babbling about her brother and his pain and the sacrifices that the family had made after the brother’s motorbike accident. At one stage of the monologue she said “Sometimes I just think I must give him some poison….”
Holy Moses!! It flashed through my mind “What type of person is this?”….
I was intrigued by the personality so I started chatting to her. All it took was one or two questions and a flood of emotions and words poured out of them. Sitting there I realized that I blog and that is what she was doing… S was blogging…..verbally.
She started telling their sad story. Brother had been involved in a motorbike accident and spent weeks in ICU, ventilated and suffering some brain damage, severe nerve damage and lots of fractures. He spent many months in hospital and gangrene developed in his leg. His leg was amputated but the gangrene spread and this lead to 3 further amputations! The mother said if she had known how he was going to suffer she would have prayed for him to die.
A small percentage of amputees suffer from phantom pain. “Although the limb is no longer there, the nerve endings at the site of the amputation continue to send pain signals to the brain that make the brain think the limb is still there. Sometimes, the brain memory of pain is retained and is interpreted as pain regardless of signals from injured nerves.” http://www.webmd.com/pain-management/guide/phantom-limb-pain. Brother apparently squarely falls into this category.
Sister loudly proclaimed, for the world to hear, that she sometimes considers giving her brother enough morphine to end his misery. She believes that he is hanging onto life until his insurance claim pays out so he has something to leave his children…
The mother is taking care of her son. It is obvious that her life has come to an end. I see the despair in her eyes when she says “He doesn’t sleep. Yesterday he threw his crutch at me…..”
Sister then whispers, in a conspiratorial manner, “We buy him lots of extra medication”
I asked them whether they had ever considered giving him cannabis. “Oh yes” they said. “We made him tea and he hated it!”
“It is better if he smokes it” I said
I looked around and saw shock and surprise register on everyone’s faces. I could see them think “How can this (sweet) middle aged, conservative, Afrikaans speaking lady even know about cannabis?”
Well, I do know about cannabis. I have researched every single aspect and possible pain management method and product and my research includes the effect of cannabis on pain relief.
Marijuana helped reduce pain in people suffering spinal cord injury and other conditions. In this study, 38 patients smoked either high-dose or low-dose marijuana; 32 finished all three sessions. Both doses reduced neuropathic pain from different causes. Results appear in the Journal of Pain.
A couple of years ago I bought some cannabis and put it in brownies for Vic to eat. She hated it. I gave her some to smoke. She hated the effect that it had on her. I know it is illegal. Personally I have never smoked or eaten the stuff so I do not know what effect it has on people. I have read, in 100’s of publications that it reduces the pain perception and can stop the devastation of Alzheimer’s.
I will stop at absolutely nothing to relieve my childs pain.
I then had a light-bulb moment – I realized that the mother and daughter were no different to me. They know the heart wrenching despair of caring for a loved one who has indescribable pain. They too pray for their loved one to find peace and release in death. They will also do anything to relieve the pain of their loved one.
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!
Vic's Final Journey 
