I sense a loneliness of the heart in Vic. I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.
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This is Vic’s Journey
Despite the fact that Vic has known for a long time that she will not die from old age the grim reality of Hospice involvement has forced Vic to come to terms with many losses.
“I still can’t believe it’s going to happen. I thought I had more time. I’m tired but I don’t feel that bad. I just feel like such a burden! I am so worried about how you will cope Mommy. We have always been so close….” Vic lamented this past week.
I am told that Vic is expressing many normal emotions that occur near the end of life. She is feeling the shock of how final death is and the guilt of being a burden on the family. Vic is also concerned about her family she will leave behind….
Knowing that death is imminent is takings its emotional toll on all of us
Vic said tonight that she has never been more scared in her entire life. She is scared of being “isolated” from us. She fears that we will not cope. She is so scared of the pain. She is so scared of leaving the boys behind….
I blogged on Vic’s fears before. https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012 That blog was based on some research and actual observations. Now the fears have intensified and are more real than ever. The situation has changed so much in the past three months. For the worse!
The good thing is that Vic is actually sharing her fears with me. Tonight we prayed over her fears. Vic, at last, is dealing with her fears.
Vic is not ready to die. I am certain that very few people actually ever feel ready to die. I have read that it is perfectly normal to feel angry about life being cut short — it’s unfair and you have a right to be mad! Unfortunately, anger often gets directed at those closest to us, the ones we love the most. We feel safe with these people and know they will probably accept our anger and forgive us for it. Vic over the past couple of months has lashed out at the boys and I.
Vic is now channelling her anger as a source of energy to help her take action where it’s needed. She is telling us, her family, things she really wants us to know. Vic has re-channelled her anger to do meaningful and positive things.
Vic feels guilty about being a burden on us. She also feels guilty that she will be leaving her children behind. Tonight she told me that she felt guilty for distracting me whilst I was driving, 32 years ago, and we were involved in an accident! I told her that I felt guilty for yelling at her when she was 4 years old. Until my dying day I will always remember the fear and confusion in her dark brown eyes….
Worrying endlessly about these long-gone things won’t make it feel better about them. It won’t ease the burden we are carrying. It won’t make us feel better. It won’t make Vic live longer…
We spoke and I told Vic that we simply have to let things go. We cannot change the past. We must fix what can be fixed and try to let go of the things that cannot be changed.
Vic is stressed that Jon-Daniel and she have drifted apart. He is angry with the situation. She wants to spend time with him to rebuild their relationship.
Vic is no longer looking ahead to a seemingly “endless” future. She has lost so many things already. The strength to get around like she used to, the ability to get together with friends….. Vic feels distanced from friends who cannot handle the fact that she is going to die soon.
Vic has had many physical and emotional losses which have come before the loss of life itself. Yet she has gained some things too. She is seeking spiritual peace, a new relationship with her God.
Hospice has given Vic Azor for the anxiety. I believe that the drug is allowing Vic the calmness to seek spiritual peace and closure. She is getting her life in order. Over the years we discussed death as a natural extension of life…. Now she is discussing her funeral with me. Psalm 23 ans 1 Cor 13 will be the readings… What I will dress her in… Her pallbearers…
I sense a loneliness of the heart in Vic. I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.
I remember how I cried when I watched the movie Passion of Christ and saw Mary having to stand by, helplessly, whilst her son suffered carrying The Cross… She had to stand by and watch Him die the cruelest of cruel deaths…
Tonight Vic prayed “Dear Lord Jesus, we have not been friends for a long time. Yet I have come to you tonight to ask You to put Your arms around my children and to protect them…”
God please have mercy on my child.
Hospice Day 11
I wish I had understood Vic’s pain-filled world earlier. I am so sorry for getting angry with her for trying to live. I wish we had more time.
via Hospice Day 11.
Hospice Day 11
Last night was an absolute night out of hell.
The subcutaneous syringe driver was halted as Vic’s tissue is so bad. Vic is now on 100mg Durogesic patches and morphine syrup. Initially it appeared to be an okay solution. Then the nausea started…. The pain steadily increased to absolute intolerable levels by last night.
Yesterday morning Vic was great! She obviously still has some of the intravenous morphine in her system. (I also gave her extra morphine syrup as a precaution). She went to breakfast with her friend Angela and had a wonderful time. She glowed when she got back. Gill, my BFF, popped in for a cup of tea and was amazed (once again) at how well Vic was looking. Madam was even wearing a shoe with a little heel (which we made her take off).
In the afternoon Vic started looking grim. She was nauseous and suffering from abdominal cramping. Her tummy was distending.
By 10pm last night Vicky was sobbing with pain. By 11pm she was vomiting uncontrollably. She has severe intestinal pain and I believe she fractured a vertebra with the vomiting.
This morning I had an early meeting. Half an hour into the meeting Vic phoned sobbing uncontrollably. I was unable to hear what she was saying through her sobs. I just said “Baby, I am on my way…”
When I arrived at home Sr Ciza from Hospice was here. She had given Vic a morphine injection and an additional 25mg Durogesic patch. Vic was already looking so much better. Ciza encouraged me to get a night nurse to assist me… She had written a motivational letter to the medical aid without my knowledge. I don’t think I am ready for that yet.
Whilst she was vomiting last night I thought of how quickly she “crashes” and how the good times have almost disappeared. Yesterday morning Angela actually looked at me with a question mark in her eyes when Vic said she wanted to go out for breakfast. I nodded my “consent”. You see I had just read a comment from an incredible brave lady.
“my husband has expressed the same concerns you have over your daughter pushing too hard when she does feel better. it is so important to me when i do have a good day to get out or make dinner, even doing laundry makes me happy. it is a reminder that i am still me. while i see your point and his, i know how vic feels and know that for me it is worth the price i pay afterward to have that time where i feel like the old me. the me before. My heart goes out to you all and say a little prayer for your continued wisdom and love. http://thedrsays.org/”
Today I would also like to quote my “mentor into the world of pain” Tracy Rydzy http://ohwhatapain.wordpress.com/author/ohwhatapain
The concept of illness as a way of telling you to slow down is frustrating, as I have always lived life in the proverbial fast lane. Since my first surgery, my life has basically come to a screeching halt. Any living I do is now in the slow lane, sometimes I never even make it off the shoulder. I think one of the most difficult aspects of pain, especially during a flare, is the comorbid (I have to use my expensive Master’s Degree vocabulary sometimes) depression and mood swings.
It’s hard to deal with the slow down. I mean, generally, this is something that comes with age and is a natural part of life, but when it happens at 33, how the heck do you reconcile that? Before “all this” I felt so strong. I felt like I could take on the world. I used to be busy everyday, all day and the craziness of my schedule was like a high. Now, I have maybe a quarter of that activity, some days, I have none. The worst part about slowing down is that the pain slows down my body, but not my mind (thankfully), so in my head I still feel like the woman who can go all day, do it all, run around all day and still have energy left to cook dinner and clean the house. Nowadays I get up at 1030am on a good day, workout and do maybe one chore, and by the time I am done I want to cry from pain and exhaustion. But I am still me. I refuse to let the pain change who I am.
I still feel like I can do it all, but I can’t. The constant drive to push and do more is, at times, a gift and a curse. I still push myself to do more, even if it comes with the cost of a day in bed. When it comes to physical therapy (and the accompanying weight loss), I know that I push myself too far, too often. That part of my brain that refuses to accept this “new normal” can’t give up certain things. One thing I can do is physical therapy, so I will do it as hard as I can and push myself, regardless of the cost to my body. A couple of weeks ago I hurt my back (more) while driving and the surgical nurse, who knows me well by this point, actually said, “I tell most patients to slow down for a little while, but I won’t bother telling you that, I know you won’t.”
Sometimes the slow down causes resentment. I get angry that those around me have a life and are busy and that adds to the mood swings and depression. The weekends are the hardest because I want to do so much more than I realistically can, yet I watch friends and family run from event to event with no need to stop and rest. For me, a trip to Wal-mart requires a rest.
Flares do bring up an interesting realization, though. Until things get as bad as they are right now, I didn’t realize that I was in less pain before. So, in essence, flares tell your body to slow down and take it easy, but at the same time, for me at least, it takes something bad to make me realize that before this, I was feeling a little better, at least by comparison. Now if only I could return to feeling like crap instead of complete crap…
So, the bottom line is, what do you do when life slows you down? http://ohwhatapain.wordpress.com/2012/09/26/flares
I wish I had understood Vic’s pain-filled world earlier. I am so sorry for getting angry with her for trying to live. I wish we had more time.
This poignant poem was written by a very gifted poet D.L.McHale. When I read it I wondered if this is what is going through my child’s mind. When you have a spare moment please visit the blog http://dlmchale.com. It will be a worthwhile visit! http://dlmchale.com
My dreams are fermented delusions
A kaleidoscope of meandering falls
Through time and space, while the
Screams of my inflictions penetrate
And annihilate my grip on reality.
My waking hours, of which few remain,
Adds another layer of darkness to an
Already bleak existence, while the light
Of relentless self-reflection blinds me to
Any hope of reprieve or absolution.
I stand with one foot in the grave
And the other hobbled by uncertainty.
I do not fear this final step into the abyss
So much as I dread the act of departure;
The inglorious gasp of a final breath
Inhaling the petrichor of a wasted life.
A silent scream rattles from my gut
Cursing the sun of a new day rising.
I cannot bear another savage stroke
From a Sun that fails to warm me.
Let the final night descend and into
Death’s warm embrace enfold my soul.
Hospice counseling….
“Mom forgets things and she thinks we are all against her… Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.
via Hospice counseling…..
Hospice counseling….
We met with Alan, the Hospice counselor, today.
On our way to Hospice Jon-Daniel sat with his arms crossed muttering “I don’t need to see anyone” under his breath. “I am like you Oumie. We don’t talk…”
“Yeah” I said. “But I really think the time has come for us to talk to someone. Besides it is part of the Hospice thing. We have to do it!”
“The whole day I was thinking of shrink jokes” Jared said. “Do you think I can ask him ‘how does this make you feel?‘”
We all laughed.
“Guys if we don’t talk to the counselor we may have to come back…. Let’s answer all the questions and get it over and done with….” I cautioned
Alan is a short young man. I think he is in his early thirty’s. We shook hands and he asked us how we wanted to “do it?”
The boys went in on their own. I sat in the waiting room saying a little prayer that they would open up to this professional stranger who is an expert in dealing with death. Thirty minutes later I was invited in.
“The boys tell me they are coping well. They don’t see the reason for seeing me…..What do you think? Are you guys coping?”
I was truly taken aback. “Yes, I think we are coping. ”
“So Tersia, why do you think the boys need to see me?”
I did not speak for a couple of minutes. I was grappling with my brain as to how much I should tell this stranger.
“I think the emotional roller coaster is getting to us. We have said our goodbyes so many times and Vic always bounces back!” I eventually said.
“Yes, Jon-Daniel said so” Alan replied.
“I worry that the boys live in a home where death lingers. There is not enough laughter in our home. It saddens me when they stand next to their Mom’s bed and I see the helplessness in their eyes!” I mused
“I get impatient with Vic. When she has half a breath she will organize a party. When the pain medication works she will not pace herself. She will hurt herself and then I have to pick up the pieces. Sometimes I am scared that her suffering will not end. ” I continued.
“What type of party will she organize?” Alan asked.
The boys and I laughed!
“It is only a figure of speech….” we explained. “She will try and do things with the boys and hurt herself.”
“What type of things?” Alan asked
“Drive and take us for a milkshake” Jared replied.
“Mom forgets things and she thinks we are all against her… Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.
“It is not about the final moments. It is not the final words or even the final disagreement. It is about the life and all the years of loving before death and dying…. You must not ever blame yourself for anything. Life is hard for all of you right now. It is okay to be scared and to get irritated. You must tell your Mom how you feel. I am not saying you must back-chat. What I am saying is that you must tell your Mom how her actions and illness makes you feel. The household consists of more than one person…. You all have the right to living…”
The boys asked to see Alan for another session…. Thank you God for another angel!
Mommy, I thought I had more time….
“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
Mommy, I thought I had more time….
“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.
Vic attended Jared’s confirmation service. I have never seen a more radiant and proud mother in my entire life.
Vic has reached another milestone in her life.
Pain keeps you alive!
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
Pain keeps you alive!
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.
A continuous subcutaneous infusion of drugs is particularly useful in the management of malignant intestinal obstruction. (see Intestinal Obstruction) http://www.hospiceworld.org/book/subcutaneous-infusions.htm
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!
Palliative care
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!
Vicky Qualifies as a Hospice Candidate…
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.
Christa told me that Prof Froehlich had phoned her the previous day and told her that “Mrs Bruce’s mom is in trouble…” https://tersiaburger.com/2012/09/12/pain-clinic-11-9
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.
Pain Clinic 11.9
Urghhh! Yesterday was a horrible day!
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.
He started writing the prescription.
“Is she coping with the pain medication?” he asked
“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?”
“Absolutely.” I said. “Do you need directions?”
“No, I have a GPS” she said….
It is going to be a longggggg night!!!
Kingdom of the Child
I read this beautiful poem and have taken the liberty to repost it. I have spent some time in Afghanistan and this reminded me of life in some of the rural villages.
The poem forms part of the Collection of Poems – D.L. McHale, 1981-2011 – It is a site worth visiting. http://dlmchale.com/2012/07/01/1087
Kingdom of the Child
Why do you weep, my child?
How long have you been sitting here, trembling
beneath these glossy-green leaves of the Banyan,
heavy laden with delicious figs?
Why are you frightened so?
The world is no bigger than you can handle
in any given moment, and you are not alone!
I promise.
Why do you moan, my precious one?
Have I not taught you the melodies
of your father’s father?
Shall I sing for you the soothing songs of your village
where you played “Mboo-bay Mboo-bay”
with your brothers and sisters?
Why such silence, my dear?
Do you not know that the sound of your voice
is as a thousand angels laughing and giggling
beside the cool riverbed.
Why do you hide from me?
Have I not held you warmly in my embrace
and rocked you to and fro
when you were frightened by the lions roar?
You know me, sweetness.
I rule the world with a benevolent hand
as I dry your tears, carry your burdens,
sing your songs, play your games
and hold you close.
Come, offer me your hand and rule with me.
Let us spin the earth like a child’s toy
as we munch on afternoon clouds
and drink oceans from a silver cup.
To your feet, my child.
We have other children
beneath other Banyans
that need our love and reassurance.
Vic's Final Journey 