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.
Vicky constantly says “sorry Mommy.” She says “sorry Mommy” when she vomits, when she is in pain, when she is ill…
Then there is a flood of “thank you’s”….. Vic says “thank you” all the time! It drives me mad! I don’t want her to apologize for being ill and I don’t want her to continuously thank me.
Vic’s situation, our situation as a family, is unfair, arbitrary, frustrating and so sad. Vic is blameless, helpless, a victim of poor sick genes and doctor error.
I know that Vic is sad about her situation. I know that Vic is sad for what the family is going through. She is sad because she cannot be the mother she wants to be. She is sad that she has a lonely, sad life devoid of partner love, physical love and friendships not based on pity. She sad because she does not have a social life and neither do we as a family. Vic is sad that she is dying in the prime of her life. Vic is sad that she has achieved so little in her life (by her standards only).
We no longer have lunches with friends, outings or holidays. Life has ground to a slow, agonizing halt… Vic floats from one pain filled day in bed to the next. When she has a good and busy day, like yesterday, she pays the price for weeks. Vic has not been out of bed today. She is deadly pale and drawn.
It is hard for her not having privacy. Vic is embarrassed that I hold her hair or wipe her face when she is vomiting. Yet she needs me with her….
We are however in this together as a family. It is a rough journey for everyone.
“I am so sorry Mommy…” …it echoes through my heart.
I am reblogging this amazing post. It is the sad and poignant blog of a young woman who is terminally ill. This is her story.
Lots of Tears With Less Than a Few Months to Live
Posted: 10/09/2012 3:40 pm
The day after her 36th birthday, Meredith Israel Thomas was diagnosed with stage IV breast cancer that had spread to her liver, lymph nodes, spine, ribs and other bones. Doctors didn’t think remission was possible, so opted against a mastectomy, but she has undergone a number of other treatments since then.
An advocate for early detection, she pledged to make the most of what was to be limited time with her family — including her young daughter Niomi, a“miracle baby,” she wrote in a blog post for HuffPost — and closest friends.
After receiving some troubling test results, Meredith met with her doctor, who broke the news that “the cancer has won,” she wrote on her CaringBridge page. “I will die from liver failure. Not in three to six months, but from weeks till around three months. The liver won, and I will die.”
I will never get over my fears of not being there for Niomi as that is what truly scares me to death, but until the day comes, I will live each day to the fullest. I will instill in her the most valuable lessons I can. I will teach her to be strong, to give her advice through letters, through videos and even through our little talks while she’s falling asleep at night. But for now, we live day by day and that takes my fears away.
She took to the blog platform to explain the doctor’s opinions and to share her plans for the precious next few weeks.
I want to let everyone know that I tried my heart out in the fight, I won’t quit until the last drop and I’ve done the best I can. This blog is the real story for Niomi. I can’t remember everything, but with this, she will know everything.
I can’t wait for her to read all the journal entries from people on the blog. People will tell her the stories about how much her mommy loves her. I must admit I am scared to walk into that playground tomorrow, but for Niomi, I will do whatever it takes.
I will cherish the dinner between my parents and Gary tonight. It was pouring rain as we left Sloan tonight and I said to my dad, doesn’t this seem like deja vu? I didn’t believe in the one-year diagnosis, but this time the results were right and realistic. My dad keeps hoping that on April Fool’s Day, we say April Fool’s, gotcha! Maybe that’s the miracle. Who knows?
To warn you — I threw out two cancer jokes today. Couldn’t help it, but that’s me. I guess that is how I live life. Example: I told my friend about this project and said it has to get done and I asked when. She said, “I promise to take care of it.” I then texted her back: “I’m on a timeline here, a real timeline, so they really need to move.” She started laughing and said, “Only you would still make jokes on a day like this.”
Everyone, thank you so much for sharing my story with people and spreading the word about early detection. Thank you for being there for me and supporting me. I read every email, text, Facebook post and guestbook entry. They all bring my family and me strength. Thank you!!!!
Can you believe I won’t know the season finale of Grey’s Anatomy, Private Practice andParenthood? UGH. Now, that sucks. Hopefully they know these things in Heaven.
Before I leave though, I want to try to get Niomi on skis, I want to be running down the beach with her as much as possible, apple picking and taking in as much healthy air as possible while she smiles.
I have lots to write and to get to on my list. I may not like that I may die bald, that I never really recovered from Bells palsy and lost the pigmentation in my face, but at the end of the day, I am beautiful no matter what. I have a husband who loves me more than anything in this world, and Niomi. I think Los Angeles would have been great and would have been great for my health, but the cards didn’t align this time and maybe it was all meant to be. Three weeks ago I was walking in Cape Town, South Africa and three weeks later I was told I will be dead within weeks to a month or so. Life leaves us all with a lot of questions, but I know I don’t blame anyone and they just better find a fucking cure for this disease before Niomi and the kids of all my friends who have been diagnosed have to fear this horrible disease.
My head is soaked and itchy. Maybe when we get her to a ski mountain, which isn’t really possible, I will walk out into the snow naked to cool off. Just kidding.
Must work on a better list that doesn’t have me flying all over the world. He won’t approve of that. But I dream of Hilton Head. My happy place. I must get back to Hilton Head to see Niomi back there on the beach or bay. I need to find all my happy places on the east coast.
For true love is inexhaustible; the more you give, the more you have. And if you go to draw at the true fountainhead, the more water you draw, the more abundant is its flow.Antoine de Saint-Exupery
Love entails profound care for another person. Love is boundless. “One can never love too much….”
No! That is not true. Loving too much is as scary as lovelessness.
It is hard to see how positive care can be criticized. Even normal cases of romantic love tend to create a narrow temporal perspective that focuses on the beloved and is often oblivious to other considerations. In a romantic love situation loving too much means that one person in the relationship’s love is not returned in equal measures creating an unhealthy in balance.. Profound romantic love is not in its nature excessively wrong; but some cases of such love have a greater chance of being so.
With regard to parental love, some might claim that loving a child too much could be harmful as it can spoil the child. Others might argue that the problem here is not in loving the child too much, but in not understanding what is good for her in the short and long term. To this one might respond that it is precisely the nature of intense emotions not to realize the genuine nature of the given circumstances.
When a child is ill the balance of love becomes severely disturbed.
So I am actually going to rephrase the question – Can a caregiver “care too much?” My answer to that: Perhaps not emotionally — hearts are pretty boundless — but in practical terms, definitely, yes. It is possible to do too much for the person you look after.
Obviously, aging and ill members of family require different levels of assistance. Providing help is often the only humane thing we can do for our loved ones. I have researched this and discovered that sometimes well-intentioned caregivers overdo the role without realizing it.
The rest of your life suffers: A spouse grows resentful and distant, you’re less attentive or fall behind at work, your child feels neglected and your friends think you’ve dropped off the planet.
Your sick loved one, on whose behalf you’re working so tirelessly, is also negatively affected. He or she may feel resentment over what’s perceived as invasiveness, may become depressed over a lack of control in his or her life, or may develop “learned helplessness” and mental and physical skills suffer from lack of practice.
How do you know when you’ve crossed the line from good intentions to brink-of-backfiring?
You handle all the details of the person’s life so effectively that they complain of having “nothing to do.” Vic for a long time said “Mom I can do my own tablets…. I said “No baby, it is fine. Let me do it!”
You’re regularly in doctors’ offices – but they’re the doctors of your loved one. You can’t remember the last time you had a check-up of your own. True!
You can’t remember the last time you took a “day off” — that is a day in which you left the house, left your everyday life, and did not do the majority of caregiving yourself. Guilty!
Caregiving is pretty much your main hobby. Not by choice!
You prepare all the meals, even though the person could do some of the prep work or cooking – even if it took longer or wasn’t done quite the way you’d prefer. Vic prefers my cooking.
You’ll drop everything to take a call from your ill loved one multiple times a day and then resist bringing the conversation to a close once you realize it’s not an emergency. Guilty, Guilty, Guilty!!
You have more fixed appointments in your weekly calendar for the person you take care of than just for you –i.e. no lunch dates, standing walks with a friend, visits to a gym. True!
You offer to do things for others reflexively — but you’d really never think of asking someone to do something very specific for you. Absolutely!
You cater to the person’s special diet needs (low salt, for example) but don’t pay any special attention to your own nutrition. Maybe…Ok guilty!
The last time you took a vacation was a long, long time ago!. Innocent!!! I went to England for a week in May 2012
A friend or relative slips and calls you a “control freak.” So? I don’t have a problem with it. Vic is my child and I know best. I love her more than any other person in the world loves her and only have her best interest at heart!
So what? I am guilty as is many, many other caregivers in my situation. We love so much that we want to protect, nurture and control. By caring we think we may extend our loved one’s life.
Tonight Vic showed me a birthday card that I gave her on the 31stof August 2002. In the February of 2002 Vic had her blotched back surgery that triggered 80 abdominal surgeries and years of pain, indignity and unbearable suffering…
I wrote “You are so special. You are brave, strong, resilient and caring. I love you so much! Baby, from now on we are moving forward. The end of all of this is in sight. Remain focused and continue to fight. I know things are getting better!”
3 October 2012 I would write: “You are so special. You have been brave, strong, resilient and caring all your life. I love you so much! Baby, from now on we are living one day at a time. The end is in sight. I am sorry I held you back for so many years. I am so sorry for the pain I have allowed you to suffer and endure seeking a cure. Know whatever I did was done in the name of love. Please forgive me. It is okay to let go now. Go in peace my beloved child. I love you more than life!”
So, in conclusion I must admit to myself, I have loved Vic with an obsessive, possessive all-consuming love all her life. From the first time she moved in my belly I loved her. When she wrapped her tiny fingers around mine I was lost…. I love you too much, child of mine, now and forever!
“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”
Vic has been accepted into the Hospice program. The doctor evaluated her at 07h00 this morning and immediately gave her a strong pain-injection. She also put on a 75mg Durogesic patch. Vic will remain at home. We now have access to nursing professionals 24/7. A subcutaneous infusion will be set up this afternoon for the administration of all further pain medication . Vic will no longer drink any tablets.
Vic has a partial obstruction and an abscess in the abdomen.
The continuous subcutaneous infusion of drugs by a small portable pump (sometimes called a “syringe driver”) is a major advance in terminal care, particularly for symptom control in the home. It has a number of advantages over intravenous therapy. It is safer (much less risk of infection and no risk of air embolus). The patient can remain fully ambulant. Tolerance does not develop to subcutaneous morphine as it does occasionally to IV morphine. (see Morphine)
The main indications for continuous subcutaneous infusions are vomiting, dysphagia, severe weakness or unconsciousness. They can be particularly useful for patients at home, either to control nausea and vomiting, or during the last days of life if the patient is no longer managing oral medication.
In the words of Dr Sue Walter, MBBCH/PALLIATIVE MEDICINE, “Vic’s suffering is inhumane”.
She explained to us that Vic’s pain is what is keeping her alive. “An adrenaline rush is the fight or flight response of the adrenal gland, in which it releases adrenaline (epinephrine). When releasing adrenaline, one’s body releases dopamine which can act as a natural pain killer. An adrenaline rush causes the muscles to perform respiration at an increased rate improving strength. It also works with the nervous system to interpret impulses that trigger selective glands.” http://en.wikipedia.org/wiki/Adrenaline_Rush
Maybe this is the final part of Vic’s journey. I do however expect her to bounce back!
Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Ultimately, many will reach a point where medical technology may be able to keep them alive but can neither restore their health nor even improve their condition. In actual fact they are merely kept breathing…. More treatment will only prolong their dying.
It is at this point that patients and families face difficult choices about the kind of care they want….
I have seen studies that clearly show that patients who access Hospice, earlier in the disease process, actually live longer than expected. Ironically it seems that Hospice, with its emphasis on quality of life, actually keeps people going. When people who are ill have good pain and symptom control and their caregivers are well supported, they don’t want to give up; they want to live longer.
Vic has reached a stage in her life where she wants to die. She has absolutely no quality of life and is growing weaker by the day. Everyday Vic loses a little more of her independence and dignity. Vic needs help with almost all her day-to-day activities.
Opinion polls decisively show that most people would prefer to die at home, free from pain and surrounded by their loved ones. Sadly people often die alone in hospitals or nursing homes, attached to life support machines they do not want. It is also a fact thatmany terminally ill people die excruciating painful deaths because, even in death, their doctors suffer from Opiophobia…
“Opiophobia is the syndrome of failure to administer adequate opioid analgesics because of the fear of producing addiction or toxicity. The etiology of opiophobia is multifactorial: Peer pressure (provider and patient), regulatory agency pressure (real or perceived), and lack of education on opioids and the fundamentals of pain management all contribute to its persistence…. All of these factors contribute to the underuse of these relatively simple and very effective medications, due to no fault of the patients. ” University of Wisconsin textbook on pain medicine, Bonica’s Management of Pain, 3rd edition:
I promised Vic no more surgery and no more hospitals. https://tersiaburger.com/2012/06/01/1-6-2012 The only humane option left is Hospice. I have been fighting for Hospice to get involved with Vic’s palliative care not to hasten her death but to enhance her quality of life!
WHAT IS PALLIATIVE CARE
Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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. Palliative care:
provides relief from pain and other distressing symptoms;
affirms life and regards dying as a normal process;
intends neither to hasten or postpone death;
integrates the psychological and spiritual aspects of patient care;
offers a support system to help patients live as actively as possible until death;
offers a support system to help the family cope during the patients illness and in their own bereavement;
uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
will enhance quality of life, and may also positively influence the course of illness;
is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. http://www.hospicepalliativecaresa.co.za/What_is_palliative_care.html
WHAT TO EXPECT
Should the patient be accepted onto a hospice programme, the Hospice team together with the patient will develop a tailor-made plan care plan. Usually patients are visited by the hospice staff in their own homes. The care and support of the hospice team will help the patient and family as they navigate their way through the challenges of living with a life-limiting condition.
The main things hospice can help with are:
pain and symptom control
psycho-social support and advise
spiritual support
emotional support
bereavement support
equipment (wheelchairs etc)
The challenges that we as a family must face with Vic’s terminal diagnosis is complex. It includes evolving new structures and dynamics as the person we love very, very slowly slips away.
Last night and again tonight, Vic said to me “Mommy, I know you think I will live forever but you must prepare yourself because I know how my body feels…”
As a family we have learnt to cope with setbacks, Vic’s health steadily deteriorating and periods of seeming remission. This “extended grief”, wears us down and leads to the horrible realization that we sometimes find ourselves wishing that the process would end…. I have often said “Sometimes I am scared Vic will never die…” I do not want my child to die. I merely want her suffering to END!
As a family we have moved into a phase where the stress of the situation can no longer be ignored. It is making all of us ill.
This week has been an emotional roller coaster! On Tuesday I cried in front of a strange doctor. Wednesday I felt that I was losing the plot. I was unable to function on a professional level. My mind was absolutely fogged over. Thursday an angel named Christa evaluated Vic and I went from absolute despair to exuberance when I heard that Hospice’s Doctor would evaluate Vic on Monday morning…
Today when Jared and I were waiting to see the doctor after his CT scan we had a long chat…
He said “Oumie I can see when you are stressed. You zone out… You have been very stressed this week….”
“Yeah” I said. “I have been a little stressed this week.”
“Since you starting writing your blog you no longer wear a mask Oumie…You handled the stress better before! You always smiled.”
OMG. What am I doing to the boys? I realized today that I have to be more careful. The mask has to go back on. I scare them when I show my stress. Imagine what it would do to them if they read my blog….. Thank God they don’t!
I left the best for last though – no immediate lymph biopsy will be done on Jared. The lymph nodes are definitely enlarged but there has been no adverse change in the past two and a half weeks. We will give his kidney some time to heal and the CT scan will be repeated again in two months time.
I am feeling so positive!
There is a God and I thank him for Jared’s outcome, Hospice intervention, Baby Isak and my wonderful, loving family. I pray that He will enfold Vic and the boys in His Mercy and Grace. I pray for my mask!
Babies are emotional beings right from birth. As parents we know that babies respond to emotional expressions such as smiling within the first few weeks of life. Within three months babies can react to and express joy, interest, anger, sadness and disgust.
Babies and young children express their emotions without reservation. In time, they however learn to control and even conceal some of their feelings, especially when they are sad, frightened, or angry.
As adults we lose our ability to communicate spontaneously. We become guarded. Many of us may still be comfortable expressing positive emotions, such as joy, pride and happiness, but will refrain from sharing feelings that we fear may make others uncomfortable.
The grieving process that walks hand in hand with terminal illness however catapults the bravest of us into a whirlpool of emotions ranging from fear, sadness and anger to irrational hope.
We are what we are. If you are naturally an introvert it will be very difficult to reach out to others when we or a loved one battles a serious or terminal illness. This makes the grieving process difficult for us. People who are comfortable in expressing their emotions are usually more able to reach out to others for the support and reassurance that they need.
When I am scared or angry I withdraw within my safe place where no one is welcome or allowed. In fear I will push people away from me. Anger is different – I will lash out and go for the jugular. Fear for my family will bring out the most primal instincts in me. I will do anything to protect them.
To maintain control I hold tightly onto my emotions– I know that if I allow myself to falter even a little, I may collapse into a whimpering heap of tears. It has taken superhuman efforts to allow Vic to see some of my pain. Well, I fool myself that she only sees some of it. Vic knows so well how my life will screech to an end the day her life ends… We have spoken about absolutely anything and everything. She knows my heart.
Tomorrow morning Jared will have a lymphoma biopsy.
Today, when I saw the tears of fear form in Vic’s eyes, I said “Stop! We never cry in front of the children”
Tomorrow I will smile, support and encourage.
Tonight I will weep for my beautiful grandson, his mother and his little brother……..I will weep for his grandfather and everyone who loves and admires him.
When I wipe my last tears I will retreat to my safe place….. Tomorrow I will smile, support and encourage.
Yesterday I was really angry with Vic and the unfairness of life!! I know it was because Jared was hurting and I was scared. I watched nurses put needles and IV’s into my beautiful grandson. I saw him being wheeled into theater for the second time this year. I remembered how ill he was as a baby and a toddler. I felt the same fear strike at my heart as 13 years ago…
I wish I could protect my child and her sons from the pain, fear and uncertainty that they live with every day of their lives. I wish I could hold them close and ward off all hardship, pain and fear. I cannot. I can only promise that I will never desert them. I will continue looking for brave doctors and cures….
For the past couple of days JD has not eaten well and lost control over her bowels a couple of times. This morning she looked at me with her beautiful, soulful brown eyes and whimpered….
A couple of times we have had her paloured for her final journey and then my courage forsook me. I kept finding excuses why she should not go for an injection. Her cough was better, “she has a sparkle in her eye”,” she “bounced” around her snack”…. Yesterday I gave her some of her all time favorite treats i.e. dried sausage (droëwors) and she did not touch it!
Last night she sat upright – I think it was too difficult to breathe. JD had congenital heart failure.
Today Danie came home from a business appointment and I said “It is time”. He knew exactly what I was saying. Vic came through and sat on the carpet with JD. She said goodbye. I picked JD up and walked to the car. Danie drove.
We took JD to our local SPCA. A young, sympathetic, female veterinarian asked me if I wanted to leave. I said “No.” She battled to find a vein. “It’s the congenital heart failure” she said.
“She is almost 16 years old” I said.
“Wow, she is really very old. She is a pretty little dog” she said
“Have you ever had a dog euthanized?” she asked
“No” I said
“I will inject an anesthetic into her veins and she will fall asleep. She may have a muscle contraction or a bowel movement. It will be unpleasant for you but not for JD. She would have passed on.”
“Okay” I said
She found a vein and JD slipped away whilst my tears fell on her coat.
At 12:05 on the 24th of August 2012 JD went to Doggie Heaven.
When you have a frozen abdomen from having 80+ abdominal surgeries, have a septic abdomen and septic prosthesis in your spine, suffer from Addison’s Disease and spend 24/7 in pain your world becomes very small. You also become well travelled as you have been to hell and back! Life gravitates around pain medication, more pain medication and hopefully some blissful sleep. Friends come and go. Spouses come and go. In an uncertain life it is a certainty that everybody eventually leaves.
So for the few of us that choose to stay around it is important to be sensitive to the emotions of the terminally ill person. Allow me to personalize this… It is important for us as a family to be sensitive to Vic’s feelings of abandonment.
Countless times a day Vic will say “Thank you Mommy for…….” “Thank you for looking after me”; “thank you for not leaving me”; “thank you for loving me” …… A child should never ever have to say that!
An adult child should rebel against the constraints of her parents rules and discipline and leave home. She leaves the safety of the home and comes back for Sunday lunches, to drop off laundry and bring a new love around to meet The Parents… Eventually the child will venture down the aisle, fall pregnant, christen her children, start running a car pool…. the list carries on and on. Eventually in large parts of the world the aged parents may move in with the now mature children and eventually die. I got married, left home, had Vic, got divorced, bought a new house, started my own business, remarried and eventually my Dad came to live with us for 18 months until he forgot how to breathe. Not once in my adult life did I ever consider moving back home to my parents. As an adult, wife and mother I often longed for the safety of my childhood home. I long for just ONE day in my life without responsibilities. I long to be a child again – carefree and cherished…. I miss my mom and wish I had her support and advice to get us through this difficult journey.
My sister and I discussed the way our lives had turned out. She has had an extremely challenging life and I seem to go from one crisis to another. We decided that we used up all our good luck and happiness as children…. I want to be a child again!
As usual I digress.
Vic is emotionally fragile. She fears that the remaining few people will also get tired of her ill health and pained life and abandon her. She fears that the boys will abandon her and look to us, the grandparents, for parenting. She fears losing the only “position” in life that she has left – the position of “Mother”. It has been very difficult to sacrifice her independence and move home. She has gone from being a wife to being a child. She has gone from being the mother to being mothered. I am a typical parent. I want to protect my little baby…. I want to do everything for her. I want to wrap her up in cotton wool and keep her resting in her bed. Maybe if she takes things easy it will buy us some extra time… If she is in bed her chances of injury is less.
Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.
I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!
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 at 16:20 we saw the doctor regarding the results of Jared’s blood tests.
When I saw the pain in Vic’s eyes it propelled me back 35 years ago when she was diagnosed. I saw the same pain in Tienie’s eyes when Vic was diagnosed with Osteogenesis Imperfecta. Well not exactly that day, but the day his mother told him that his paternal father had died at the age of 35 from an undiagnosed disease that had OI symptoms…
When Vic decided at the age of 21 to get married Tienie and I really weren’t happy. We felt that she was too young and the way forward with OI would only get more difficult. I spent a lot of time talking to Vicky and Colin about OI and the fact that they could never have children. Vic wanted to get married and those of you that know her will know that once she has made up her mind nothing can or will stop her.
The day of the wedding I sobbed my heart out. She looked so beautiful!! I had a premonition of impending disaster… but then again most mothers feel that way when their daughters get married… Vic was just so young and had such a poor prognosis. I had been a child bride and knew how difficult it was.
Vicky fell pregnant six weeks after her wedding. The Sunday night they came to tell us I sobbed and sobbed!! I immediately made an appointment for Vicky and Colin to see the Wits Dept. of Genetics on the Wednesday. I went with and until today remember the feeling of doom descend on me when the genealogist strongly advised Vic to have a legal abortion. The baby had more than 50% chance of being born with OI or at best would be a carrier or the OI gene.
Vicky refused flat out to have an abortion. She said the baby was straight from heaven.
We went to see the gynaecologist and I saw the baby’s heartbeat. Two weeks later Vic was in hospital with a threatening miscarriage. She fought for her baby through-out her pregnancy. I fought with her because of her baby… I was fighting for Vic’s life.
Tienie was so angry because Vic was pregnant that he refused to speak to her for months. I went and saw him at his office at cried. I begged him to put aside his anger and support her – we may lose her in childbirth… Tienie looked at me and said: “We all grieve in our own way. I wish I could cry…)
Throughout the pregnancy I was petrified that Vic would give birth to an OI baby. On Christmas Day Vic went into labor… On the morning of the 26th Vic had a cesarean section and gave birth to a healthy, albeit ugly, little son. When they ran down the theatre passage with Jared in an incubator I caught a brief glimpse of him. A rush of love, like I have never experienced before, overcome me. I cried from the wave of love. Colin stood crying next to me and we just hugged and clung to one another…
As a baby Jared was very ill. He spent a lot of time in hospital. At one stage the doctors thought he was going to die – he battled viral infections until he was about 5. At the age of 5 Jared developed a sugar problem whilst Vic was ventilated https://tersiaburger.com/2012/05/28/22-2-2002-to-28-5-2012/Osteogenesis Imperfecta … 22.2.2002 to 28.5.2012. Doctors said it was stress related.
Last week Jared developed chest pains again. ECG, CT scan, Blood tests and X-rays…Result of CT showed numerous kidney stones. Results of the bloods read as follows “Low positive ANA titres are often non-specific and may be seen in elderly individuals, following viral infections or tissue damage, or in patients with malignancies. It may also be seen in normal individuals, relatives of patients with connective tissue diseases, as an early marker in individuals that may later develop a connective tissue disease and in association with other auto-immune diseases, e.g. rheumatoid arthritis” We will firstly see a Urologist to resolve the kidney stone issue and then a Physician. Maybe it is nothing to be worried about.
When I got home today Vic asked me what was wrong. I tried to lie to her but she saw right through me. When I showed her the blood test results she just sobbed. I saw the pain that Tienie felt all the years of her life, the guilt of knowing that a faulty gene has passed from parent to child…
Jared is strong and resilient. I have faith that he will get through this trying time stronger than before. I am confident that it will not be too serious.
I wish with every fiber in my body that Jared could have a sterilization operation that this curse can come to an end. One way or another I am going to break this child’s heart when I have the “Please do not consider procreation until there is a cure or a way of isolating the faulty gene…” We have touched on it but I am afraid it will have to be a serious chat.
My heart breaks for my child. I wish she could go through this phase of her journey without this pain and worry… I wish that I had never said to her “I don’t know if I can go through this again…” I wish I never heard her say “Mommy do you want me to go to a home?”
I hate my life. I hate the life my poor child has to endure. I hate the life that Jared may have to live.
It is 20:00 and Vic has been fed, changed, powdered and medicated. She screamed in pain when I changed her. Seeing my child sick and in pain, every day of her life kills me. I am dying, painfully slowly from my child’s pain.
I don’t know how much longer I can handle this. The chronic pain I am used to but this new pain is pushing all of us over the edge.
Esther called today and wants Danie and I to go to a Spa, close by, and she and Tracey will take turns in looking after Vic… How nice is that!! But I cannot. I cannot leave Vic now. Nobody knows her body the way I do. It is too big a responsibility to hand over to anyone. She needs lots of personal help. Vic needs pain meds’ every four hours, day and night. If she misses med’s she breaks through her pain levels and then it is disastrous. What if she needs help during the night as she so often does? What if she vomits and needs me? No can do!! I cannot desert Vic. Until she breathes her last breath I will be by her side. No matter how long it takes.
Many years ago I promised Vic that I would not let her die alone.
When Jesus was praying in Gethsemane his disciples fell asleep on Him. I am so scared that I will fall asleep on Vic in her final hour. I don’t think Vic is near the end. I have been around dying people enough to know the signs. But she needs me now.
Vic's Final Journey 