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.
It was a horrible time of our lives when Vic started going to the Pain Clinic. Her pain was out of control – or so I thought. It was actually just “preparation school” for what was yet to come…. I was mortified that she was on 600 mg of morphine, a week…. When Hospice accepted Vic onto the program in 2013, a mere 9 years later, she was already on 600mg of morphine, twice per day.
I digress.
Vic needed to consult with an anaesthetist, specialising in pain control, on a monthly basis. He would examine her and re-evaluated her pain medication. We need an original prescription for morphine. It was one of those dreadful experimental phases of her life. But, bad things lead to great things…
The Pain Clinic was situated in an élite part of our city. It was a mission to get to it and took many hours out of a day.
“If you wish to remember me, do it with a kind deed or word to someone who needs you. If you do what I have asked, I will live forever.”
This particular day Vic was in terrible pain, and it was difficult moving her from the car into the wheelchair. Her beautiful eyes were dark from pain and filled with tears. I remember thinking “How tiny and sad she looks”…
We stood waiting for the elevator. It felt like a lifetime. All I wanted to do was get Vic into the consulting rooms so she could get a booster shot of morphine. I was getting quite impatient, with the delay of the lift, when it started moving down. I noticed quite a build-up of people on the outer periphery but did not pay too much attention to them. I was totally focussed on my child’s pain and discomfort.
The door opened. Two tall men, wearing sunglasses, walked out. There was an audible gasp in the hall. The greatest statesman in the world, Nelson Rolihlahla Mandela, stood behind them. He was so tall! In total awe I moved Vic’s wheelchair back clearing the way for this amazing man.
He walked out of the lift and walked towards us. He stood in front of Vic. He stooped down, stuck out his hand, and said “Hello my dear. How are you?”
“I hope you feel better soon,” he said in his beautiful, raspy yet gentle voice.
He greeted me, still holding her little hand. I will never forget his gentle eyes. He had an aura of greatness.
Vicky and Nelson Mandela – Two great warriors locked in a moment of kinship.
“Goodbye” he said and walked away.
I know that Vic and Nelson Mandela will meet, again, in Heaven… I believe that the two brave souls will recognise one another. This time there will be enough time for them to linger and chat. The people they are it will be about their loved ones, the grace they experienced in their lives… I know they will not discuss the hardship, pain or suffering they lived…
Two incredible people… Nelson Rohihlahla Mandela and Vicky Bruce. Heroes of many… two people who made a difference, through their suffering; their bravery and inner strength.
I am starting to forget Vic’s pain, the relentless nausea, intestinal obstructions, cramping. I have blocked all the excursions to doctors, Radiology and Pathology Departments…the countless “Bad News” meeting with doctors. I now focus on my longing for her. The good and funny times…
I am unable to remain angry for a long time. Well, at least with people I love. I forgive easily. Life is too short, and negative energy drains me. Danie, my husband, believes I have a split personality. If, or rather when we have an argument, I will say what I want to say. I play the ball and not the man. I don’t get personal nor do I generalise. Within minutes of the argument I would have forgotten I am angry and start chatting again as if nothing ever happened. Danie will sulk and stay angry for days…
When I have been harmed by malicious people, I forget. They no longer “exist” in my life, but I don’t walk around with anger in me. I will remain civil. I just don’t care anymore.
The bad thing about this wonderful brain of mine is that it also blocks out the good parts of bad memories… As I no longer have a daughter to cure I Googled my own “symptoms” and found the following information http://io9.com/5952297/two-ways-to-forget-bad-memories-according-to-a-new-scientific-study “One mechanism, directsuppression, disengages episodic retrieval through the systemic inhibition of hippocampal processing that originates from right dorsolateral prefrontal cortex (PFC). The opposite mechanism, thought substitution, instead engages retrieval processes to occupy the limited focus of awareness with a substitute memory. It is mediated by interactions between left caudal and midventrolateral PFC that support the selective retrieval of substitutes in the context of prepotent, unwanted memories.”
Specifically, individuals could remember what caused the event, but were able to forget what happened and how it made them feel. Co-author Professor MacLeod said: ‘The capacity to engage in this kind of intentional forgetting may be critical to our ability to maintain coherent images about who we are and what we are like.’
In one of my posts, https://tersiaburger.com/2013/05/25/most-influential-blogger-award/, I wrote that I would like to meet Nelson Mandela. A blogger friend commented on it and it triggered something in my mind. I HAVE met Nelson Mandela. I should have articulated it differently – I should have said I would like to talk to him.
It was a horrible time of our lives when Vic started going to the Pain Clinic. Her pain was out of control – or so I thought. It was actually just “preparation school” for what was yet to come…. I was mortified that she was on 600 mg of morphine, a week…. When Hospice accepted Vic onto the program, she was already on 600mg of morphine, twice per day.
I digress.
Vic needed to consult with an anaesthetist, specialising in pain control, on a monthly basis to examined, her pain evaluated and to get a new prescription for the morphine. It was one of those dreadful experimental phases of her life. But, bad things lead to great things…
The Pain Clinic was in an élite part of our city. It was a schlep to get to it and took hours out of a day.
This particular day Vic was in terrible pain, and it was difficult moving her from the car into the wheelchair. Her beautiful eyes were dark from pain and filled with tears. I remember thinking “How tiny and sad she looks”…
We stood at the elevator for what felt like a lifetime. All I wanted to do was get Vic into the consulting rooms so she could get an injection for pain… I was getting quite impatient with the delay of the lift when it started moving down. I noticed quite a build-up of people on the outer periphery but did not pay too much attention to it.
The door opened. Two tall men, wearing sunglasses, walked out. There was an audible gasp in the hall. The greatest statesman in the world, Nelson Rolihlahla Mandela, stood behind them. He was so tall!
In total awe I moved Vic’s wheelchair back clearing the way for this amazing man.
He walked out of the lift and came towards us. He stood in front of Vic, stuck out his hand, and said “Hello my dear. How are you?”
“I hope you feel better soon,” he said in his beautiful, raspy yet gentle voice.
He greeted me, still holding her hand. I will never forget his gentle eyes. He had an aura of greatness. Two great warriors were locked in a moment of kinship.
“Goodbye” he said and walked away.
Death is however closing in on this amazing man. This year, by the Grace of God, our country and the rest of the world will celebrate this great man’s 95th birthday. Given his poor health and advanced age, it is to be expected that he will die not too far in the future. It will be a sad day for South Africa and the rest of the world.
I know that he will meet Vic again in Heaven. I believe that the two brave souls will recognise one another. This time there will be enough time for them to linger and chat. The people they are- it will be about their loved ones, the grace they experienced in their lives… I know they will not discuss the hardship, pain or suffering.
Two incredible people… Nelson Rohihlahla Mandela and Vicky Bruce. Hero’s of many… two people who have made a difference, lead by example.
“Oh Mr President, my mom is your biggest fan ever…”
“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.” –Dame Cicely Saunders
The Hospice doctor that called to see and evaluate Vic was a tall, slim young woman. She has a gentle voice and long fingers with short nails. She drives a Jeep and keeps large dogs. She looks like a naturalist.
“I am Dr Sue Walters from Hospice. The Pain Clinic asked us to see you. Is it okay for me to examine you?” she asked Vic in her gentle voice.
Vic’s abdomen was severely distended and very tender. She was running a fever and her resting heart rate of 103 indicating severe pain despite the fact that she had already taken her pain medication. Vicky’s vitals were poor.
Sue administered a strong morphine injection.
“Vicky, you appear to have an abscess on the right-hand side of your abdomen. The skin is hot to the touch and distended. I think you have a partial obstruction.” Dr Sue said to Vic.
“I am here to see if Hospice can help you. Do you realize that you are very ill my love?” Dr Sue asked Vic.
“Hospice will not hasten your death my love. It would be our aim and purpose to provide you with pain relief and quality of life. We will treat you and not the disease. It is exclusively your decision whether you want us to help you and how you want us to help you.” She explained to Vic
Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to help patients live their last days as alert and pain-free as possible. Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered — it includes the patient and the family in making decisions. http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care
Vic was in so much pain that she was barely able to speak. Tears welled up in her eyes and she softly said “Please doctor”.
“My love, you need to tell us how you want us to treat your symptoms such as obstructions?” Dr Sue asked
“I want no life extending treatment. I am so tired doctor” Vic whispered. “I can’t do this anymore…..”
“That’s fine my love. We will try and relieve your pain and give you some quality of life.”
“Mommy I thought I had more time…” Vic said with tears silently running down her cheeks…… Then the injection kicked in and she drifted off to sleep.
Dr Sue said that the responsible sister would collect the morphine from the Hospice pharmacy and she would set up a subcutaneous morphine syringe system by that afternoon. Hospice would arrange for counseling for the boys.
She hugged me and left. All of a sudden I felt so alone again!
Subcutaneous, or under-the-skin, injections use a needle to deliver medications into tissue just under the skin. An infusion of morphine, anti-nausea medication and Dormicum is now administered 24/7.
The first couple of days Vic slept a lot. She was tired but there was immediate pain relief.
The nausea subsided and the partial obstruction cleared two days later!
The first infusion site was in her leg. Within a day and a half the area “tissued”. A common side effect associated with subcutaneous injections is injection-site reaction such as swelling, redness, and pain. We phoned Hospice and the Nurse promptly came and the needle was reinserted into the arm. Within two hours the needle came out again and the morphine was running onto the skin. It was too late for the Hospice Nurse to return and to re-insert the needle so Vic went to the doctor and he relocated the needle into the abdominal area.
Last night the tissue in the abdominal area had tissued again. It was also bloody and the morphine was running onto the skin and not into the tissue. Vic was nauseous with pain. I had no option but to remove the needle and re-inserting it into a different site.
“I think we should put it into the other side of your tummy” I said
“Mommy, I will insert the needle if you help me…” Vic replied
“No sweetie” I said. “I will do it”
My heart was in my throat. I removed the needle and cleaned the injection site. I disinfected the new site that I had identified. I took the needle in my hand and lifted the skin. I pushed the needle against the skin. I assumed that the needle would just slide in… It did not just slide in! There was resistance!! I let go of the skin and changed my position. I could hear and feel my heart pounding in my ears! I again took my child’s skin between my fingers and pulled it upward.
“Maybe I should relax my hold onto the skin…maybe the skin must more relaxed?…..” I thought.
I exerted pressure on the needle and it slid in… Sweet success!!!!
“Oh Mommy you are such a star! Thank you. That did not hurt at all!” Vic gushed.
I do not believe her. I had felt her little body tense up as the needle went in. It hurt!
My entire body shook. The bile rose in my throat and I slowly let out my breath.
We have all come such a far way. Until last night I could not watch anyone stick a needle into my child. Now I have stuck a needle into my child’s flesh. I fear that Vicky’s tissue is too poor for us to continue on the subcutaneous route…… If we do I will have to do this many more times in my life.
The good news is that I was actually able to work the whole week. It was the annual African Air and Defense Show and we exhibited. Normally I would be absolutely frantic about Vic. But I was okay with the fact that she is relatively pain free and the nursing sister visits every two days.
Vic is far more active. She is truly so much better. The partial obstruction appears to have cleared! She spends time chatting to the boys. On Saturday she took Jared shopping for a new shirt and shoes!
On Sunday morning Jared lit candles “For those we have loved and lost but will forever be in our memories♥..Gramps, Oupa Tienie, Ouma, Nan and Oupes♡” Vic handed him his baptism candle that she received 15.5 years ago at his christening. He lit his candle as he took responsibility for his own walk with God. Vic and I laid hands on him and prayed for him. It was so touching.
Joyous day!
Vic attended Jared’s confirmation service. I have never seen a more radiant and proud mother in my entire life.
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!
Just seconds ago I was thinking “What a glorious wonderful day…” when the thought crossed my mind “Hang on a minute…. It is a glorious day because Hospice have agreed to evaluate my sick child????”
Hello!!! How sick is that that our lives has degenerated into a hellhole where Hospice is good news!!
This morning Christa, an internationally acclaimed pain expert, came to evaluate Vic at home. She spent a lot of time with Danie and me to build up a case history on Vic. Christa works for Janssen Pharmaceutical Company as a “Medical Scientific Liaison: Pain”… Part of her responsibilities is to liaise and advise the Pain Clinic and Hospice as an expert!
It was as if a floodgate opened. I rambled on about Vic’s (health) background, history, symptoms, operations, treatment and decisions. I showed X-Rays and photo’s of Vic abdomen at different stages of Vic’s 10 year journey. She was shocked to hear that Vic spends 95% of her life in bed. That she is too tired to even read.
I should have cried earlier. I have been fighting for months to achieve this! Then when I give up my fear, exhaustion, stress and defeat obviously showed… Maybe it is the new doctor who has not been desensitized to the suffering of the patients… Maybe there is a God of Mercy after all.
After chatting to us and taking copious notes, we got into Vic’s pain medication regime. I told her about this wonder drug, Jurnista. She just smiled and told me that Janssen’s manufacture Jurnista! I am amazed that she consults for the Pain Clinic and Hospice and they don’t have the budget to supply Jurnista!
I eventually took her to meet Vic. (Shame poor soul got such a fright when I woke her). She examined Vic briefly, spoke some and made wonderful sympathetic sounds. I introduced her to Jared who was in bed as he was in too much pain to go to school.
She explained to Jared that she was here to evaluate his mom and would be making a recommendation that Vic be accepted into the Hospice program. She also told him we, as a family, needed to have some counselling. The psychiatrist would come to our home…. Jared told her that his pastor’s wife was coming to see him in the afternoon…. I smiled. I know the boys so well. They automatically put up barriers when they hear the word “counselling”…. (It was really the truth – Mrs Pastor did visit. First visit in 4 years from Vic’s church…)
Christa wished Vic well, hugged me and said “Vicky clearly qualifies for palliative care. I will talk to the Hospice Palliative Care doctor and recommend that they accept Vicky into the program. I will phone you this afternoon”
At 5 pm this afternoon Christa phoned to confirm that the Hospice doctor will evaluate Vic on Monday morning at 7 am! I read somewhere that terminally ill people often feel that upon entering the Hospice program they go from “dying from….” to “living with….” It is my heartfelt prayer that this will be the case with Vic.
Tomorrow morning at 9 o’clock my beautiful Jared will go for his CT scan. At 12 O clock we will see the surgeon.
I have stopped thinking and researching Lymphoma. My heart has stopped beating. It is pounding.
Vic was fine but it was Pain Clinic day…………. I start stressing about the Pain Clinic the day before. Although it is on an appointment only basis, it is also first come first serve……
With the amount of morphine Vic takes, she needs to be assessed on a monthly basis by a pain specialist. Vic was not able to go with yesterday morning so I set off on my own. By now the Pain Team knows me well. Even when Vic goes I am actually able to give them more succinct feedback on Vic’s pain control than she is.
Generally I do not have a problem in getting her script even when I am on my own. I walked in just before 8am and the waiting area was packed! My heart dropped into my shoes. It was going to be a longggggg day…..
Surprise, surprise – no Prof Froehlich! Just a young anesthetist I do not know. It was going to be an even longer and more stressful day than I imagined when I walked in.
Well, what a pleasant surprise when the Sister in Charge called out a number of patients and handed them their repeat scripts. That was a first!!! All of a sudden the queue was much shorter! There was hope….
I was the second “patient” to be consulted. Yeah!!!
The Pain Clinic works on a two file system. The Pink file contains the Team’s observations and notes on previous consults, medical history, medical letters, test results etc. The patient keeps the brown file. It contains the prescriptions.
The new doctor introduced himself and apologized for the professor not being there. He started paging through the pink file. He frowned. He read. He paged back. He frowned more. He shook his head in disbelief and clicked his tongue. I sat there and I thought: “Flippen hell!! He is not going to give me the morphine script and we have no reserve stock. He will want to consult with the Professor first or insist on seeing Vic…We will have to come back.”
Maybe I can ask Danie to help her get dressed and bring her to the Clinic…But she was in so much pain when I left and had vomited violently the previous night from pain.
“Who takes care of Mrs Bruce?” he asked
“I do”
“Do you have help and who is looking after her now?” he asked
“My husband is amazing. He helps and her boys help. I also have a domestic who assists.”
“Are you able to work taking care of Mrs Bruce?” he asked
“I am fortunate. I am able to work from home.” I said
“How are her sons handling her situation?” he asked
To my shame I started tearing up. The Sister got up and handed me a tissue.
“It is very hard for them. I sometimes see the helpless despair in their eyes when they look at her. Her eldest has been in hospital twice in a matter of two weeks for kidney stones and Vic not able to go with him to the hospital. She was too ill… And now the doctors suspect he may have Lymphoma. He is only 15…”
“How is she handling it?” he asked
“Vic is absolutely devastated. She feels so guilty that she is unable to be a “proper” Mom to the boys… She is worried sick!” I said in a weepy voice.
“Are you having any professional counseling?” he asked
“No I replied. We use all our financial resources to pay doctors, hospitals and pharmacies. Counseling cannot and will not keep Vic alive.” I replied.
“The Jurnista is amazing. It has made a phenomenal difference in her pain management.” I said
“The hospital will not supply you with the Jurnista.” he said
“I know. May I have a private script for it please? I asked
“There is no morphine syrup in stock doctor. Please put the syrup on Mrs Bruce’s private script.” the Sister in Charge said.
He handed me the brown file and an envelope.
“I have written a referral to the Hospital’s Psychology Department. You need to see someone as a family to help you through this.” he said. “There are other palliative care options other than Hospice. I see in Mrs Bruce’s file the Prof is working on it…” he concluded
I did not dignify his remark with an answer. We shook hands. He wished us well and I left to spend another couple of hours waiting for the medication to be dispensed. I fell asleep in my stainless steel chair outside the pharmacy and my neighbor had to wake me when it was my turn.
Today I went to meet Lani’s foster son. I am going to gloss over my visit with baby Izak. He is so cute that I need to dedicate an entire post to him.
On my way home I had a phone call.
“My name is Christa. I have been asked by Prof Froehlich to assess Mrs Bruce for palliative care assistance. Would 9am tomorrow suit you?”
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.
I have become accustomed to the ICU at the Donald Gordon Hospital. DGH has one of the best Intensive Care Units in the country. There are always 3 ICU doctors on duty and well as a HIGHLY skilled Head of Department. No full-time doctors or pain specialists in the Union’s ICU.
The difference is that the DGH is a private teaching Hospital and does not handle trauma patients. Only critically ill patients are admitted to the Donald Gordon ICU. The staff are all ICU specialists. Ok, I must admit that they also know Vic very, very well. For the past 7 years they kept Vic alive. Time and time again she has amazed and astounded them by surviving every conceivable Super Bug, ARDS (Acute Respiratory Distress Syndrome), sepsis, organ failure… they know exactly how her body reacts to pain and how she reacts to different drugs. The doctors that work in the ICU do work at the Pain Clinic. They understand the benefits of post operation Ketamine Infusions.
Over the years Vic has spent months and months in the DGH ICU…
When Vic was admitted to ICU at the DGH the last time, one of the doctors said that if she ever decided to give up her fight to live, he would not fight for her. He knows what she has been through.
This past weekend I spend a lot of time in the Union’s ICU. More time than I have ever been allowed to spend in the DGH’s ICU.
Vic, on Sunday morning, was like a wild animal caught in a trap. Her eyes were crazy. Vic’s pain levels were horrific and the ICU staff did not know how to handle it. On Saturday night after the surgery I was not allowed to stay with her, despite the doctor’s instruction to “Allow the mother to stay”. I had to sit in the “Comfort Room”. It was so cold in there! The air-conditioning was turned down to near freezing levels. I was so cold that the bones in my body ached. At 03:00 I decided to go home. I was not allowed to stay with Vic and at that stage she was sleeping peacefully.
I was woken just after 07:00 by the ICU staff asking me to come to the hospital…
My well behaved, docile child had sworn at her nurse. She was insane with pain. Whilst I was telling them what medication she needed to control her pain (yes that is correct) I was trying to calm her down. I made the mistake of telling her to calm down… That was an epic mistake!!!
We eventually managed to get her pain under control and then the staff asked me to stay… I basically left ICU when Vic was discharged into the ward Monday afternoon …
Sitting next to Vic’s bed I looked around and noted that almost 70% of the ICU patients were on life support. In the one corner there was a young man. I would imagine that he was in his mid-thirties. “Was” is correct. He was declared brain dead yesterday morning. By now his organs may have been harvested. Maybe not. What I am sure of is that his bed is no longer occupied by his imposing body. Even in the claws of death he had an imposing physique and a presence. Yet he had no visitors. Not a single soul came to see him… until yesterday morning when his next of kin were called in and given the news. One by one they traipsed in, spent a couple of minutes (at most) next to his bed, wiped some tears and walked out… He was left to die alone.
Other patients had hoards of visitors – each spending a couple of minutes with their loved one and then returning to the cold passages to chat to old friends or other family. The patient oblivious to their tears and worried faces… battling each “breath” of the artificial lungs… Dialysis machines cleaning their kidneys… blood pressure and heart rate artificially manipulated by chemicals. Looking at their vitals one would never guess the life-and-death battle raging in their bloated bodies.
I have a Living Will. I do not want to be kept alive artificially. I am absolutely certain about it. I cannot and will not be convinced otherwise. People should be allowed to die with some dignity. We all live to die…it is as certain as paying taxes.
What is the purpose of a life with debilitating pain??? I do not want to put my family through it – ever!! Oh I know my family will miss me. I know I am loved. I however know that we live to die. I look forward to dying. I look forward to what I have strived for all my life. Peace, no responsibilities, quiet… I know that I will go to Heaven. I have already been to hell. I live hell every day.
If I had been ill I could have handled it. I would quietly have found a way of leaving it behind. To stand next to your child’s bed, helpless, hope less and hopeless is the worst situation any parent ever should have to go through.
So tonight I ask God again: PLEASE give me the pain. Allow Vicky to have some quality of life. Allow her a life. Allow her to be loved. Allow her to love unconditionally and without fear. Please let her be able to run… give her time on a beach; allow her to turn her face into the sun. PLEASE let her have a normal life, a job, independence or end this journey.
On Monday afternoon Vic was discharged from ICU to the ward. I asked the doctor to let Vic come home straight out of ICU. I can take better care of her at home than they can do in hospital. Vic is home and last night was a night out of hell. She was so ill, vomiting all night. She could not keep her medication down. No sooner did she take a sip or water or it just came spewing out. Pain control was absolutely out of the question.
Today I received a message from the Pain Clinic that the Hospice application motivation was underway. Hopefully we will have an answer by next week. If only I could give Vic meds intravenously it would be so much better.
Vic also needs physiological support/guidance in making peace with her situation. From her moments of madness in ICU it became clear to me that Vic has some deep-seated resentments and a lot of anger in her. Vic needs to make peace with her journey and the trip itinerary.
But more about our family conference and Vic’s emotional battle tomorrow. It is time for her medication and I need to sleep.
It was with fear and trepidation that I gave Vic her medication last night. Esther, (Vic’s big sister and a pharmacist) asked me whether the Jurnista replaced the morphine and was just a little surprised that it was in addition to the Morphine, Neurontin, Degrenol and Stilpayne. My research really scared me yet strangely I was at peace.
By 24:00 Vic felt no difference and her pain was at a solid 9. By 02:00 her pain was a little easier. Vic had a fairly good night. But she is having a very good day!!! The Jurnista appears to be working! Vic rested well this morning and went out for coffee with Tracey! How absolutely amazing is that!
Last Sunday, Frik, a Christian colleague phoned me after church and asked me to give Vic a message. “Please tell Vicky that God wants me to tell her that He loves her”… She was too ill and I only told her on Tuesday. I missed the Tuesday Pain Clinic appointment… On Thursday the Pain Clinic doctor is a wonderful, compassionate, young Muslim man who showed mercy and compassion …
My faith has often wavered over the past ten years. Not in God but in a God of Mercy. The actions of the church, Christians, doctors, nursing staff, radiologists, Hospice, family and friends, mostly reflected a cold, loveless society that does not begin to understand what compassion means
When we first received Vic’s death sentence there was an absolute outpouring of love. But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives. My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace. Well, this time you cannot hurt us because you are faceless.
I am digressing. This week we were reminded that there are still angels around. A compassionate man who prays for pain relief of a young woman he has never met, a doctor who prescribes palliative care medication… The Jurnista could hasten Vic’s imminent demise but I don’t care. I would rather she spend one pain free day with her boys and family than a lifetime in the pain that she lives with.
Many people have left wonderful caring messages on my email, comments on the blog and Facebook. Thank you! It really does mean a lot to us. Vic does not read my blog neither do her boys. But Vic has truly appreciated the contact some of her old school friends have made. As I said before, dying is a lonely business!
But today we celebrate the wonderful new drug! I thank God for sending angels along our way. I thank God for His message through Frik, when I was at the lowest low in my life!! I thank God for Dr Jaffer Hussain! I thank God for your messages of encouragement and above all I thank God for Vic’s good day! Thank you, thank you, thank you God! Even if it is only one good day!
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.
What a lovely surprise. Gillian and Len popped around for a cup of tea! What makes it unusual is the fact that they live in White River and have just been to the Sani Pass. Vic was so happy. She cried tears of happiness when she saw Len. For a precious hour today we were able to laugh and visit with dear friends.
Len is the second “oldest” living male role figure in Vic’s life. My brother Johan is the “oldest” living male role model. Gill and Len have been my dearest friends for the past 34 years. Is oldest the correct word? Len is older than Johan and yet Johan is the “oldest” male…So “oldest” in this case means the “longest around”…
Gill was so amazed. When she last saw Vic she was convinced that she would not see Vic alive again… In the meantime Vic has had her fall and technically speaking should be so much worse off. But Vic has once again bounced back.
I decided that maybe I should check the difference between critical, chronic and terminal illness. Maybe Vic is just chronically ill and the doctors got the terminology wrong.
“A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects.[1] The term chronic is usually applied when the course of the disease lasts for more than three months.[1] Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and HIV/AIDS”. From Wikipedia
Critical illnesses are serious illnesses that put the afflicted in danger of possibly dying. The illnesses that are considered critical tend to vary. Typically the big four critical illnesses that are covered would be heart attack, cancer, stroke and coronary artery by-pass surgery.
“Terminal illnessis a medical term popularized in the 20th century to describe a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease which will eventually end the life of the sufferer”. From Wikipedia
So according to Wikipedia Vic squarely falls into the terminal illness category.
The experience of death and dying has been transformed over time by significant advances in medical care and technologies, from a short-term event into one that usually involves a prolonged time of slow decline from chronic degenerative conditions.
Let’s look at Vic. Vic was diagnosed with Osteogenesis Imperfectaas the age of 18 months. By her 3rd birthday Vic had had 41 fractures. The prognosis: – Vic would not live to be older than 12
Vic survived her 12th birthday and got married at the age of 21. Vic fell pregnant 6 weeks after the wedding. The prognosis: Vic would not survive the birth of her baby.
Vic survived the birth of Jared. When he was 7 months old Vic needed surgery to both her wrists. She had fractured both her wrists and torn the ligaments picking up her baby. When Jared was 13 months old Vic fell pregnant for the second time. The prognosis: Vic and the baby would not survive the pregnancy. Vic was on bed rest when she was 3 months into her 2nd pregnancy.
It was a difficult pregnancy. Vic survived and so did Jon-Daniel.
At the age of 26 Vic had a hysterectomy. Age 27 Vic had her blotched pro-disc surgery. Life threatening sepsis resulted in 80, mainly abdominal surgeries. Now in 2012 there is no further treatment or surgeries available. Over the past 10 years Vic has bounced between life and death. She has certainly had good times as well as bad times over the past 10 years. She has loved and hated, laughed and cried. She has had good days and real bad days. She has raised two beautiful boys to be compassionate, caring, responsible young men. Boys that have brought so much joy to their mother’s life and that make us all so proud. Young men that we know will honor their mother and their upbringing for the rest of their lives.
The difference however is that this year I believe Vic went from chronic illness to terminal illness. This year the medical profession has given up hope. Brendon has categorically stated he will perform no further gastrointestinal operations on Vic, The orthopedic surgeon refuses to pin her arm and the physician cancels blood tests… On Friday we went back to the orthopod as her hand is so swollen and the pain is getting worse in the arm. The X-rays showed that the fracture has been aggravated. The displacement worse and yet he cannot do anything. The sepsis from the spine and abdomen will spread to the arm.
Everyone has given up on Vic.
It is so soul destroying that no-one is prepared to try anymore. This year every darn doctor has refused me. I have always been able to bully them into trying one more time…just one more time. I cannot take Vic to another gastroenterologist because someone who does not know the condition of her abdomen will certainly cause her death.
Tonight, after Vic’s 23:00 medication she just sobbed and sobbed. I know her arm is really hurting. She asked me to lay with her and I held her until her sobs subsided and her breathing became deep and peaceful. She kept murmuring “I am sorry Mommy…”
Sorry for what? Vic is sorry that she has “let me down”. That she has failed at surviving and truly bouncing back. Being able to maintain a “life” and assuming responsibility for her own household and family.
Gill gently suggested that I blog happy moments… So when I sat down tonight I tried to think of happy moments to share but I could not! Gill says my blog is sad and I suppose it is. The blog however mirrors my deepest feelings.
I am sad for my beautiful little girl. I am sad seeing Vic deteriorate and her suffering increase. I am sad for my beautiful grandsons and the despair in their eyes when they look at their Mom…
Vic's Final Journey 
