We are seeing a GP tomorrow morning regarding Vic’s arm. Both her arm and hand are so swollen that I am concerned that she may actually lose her arm. It has now been more than a month from the day that she fractured her arm. When I bathed her tonight I removed part of the dressing that is protecting her arm. Her arm is still black and blue and horrifically swollen. I am convinced that she has pressure sores under the cast.
Today was a truly exciting day… (Relax, I am being facetious)
We phoned the Orthopod that treated Vic in hospital. Sorry, he (Dr Y) can only see Vic next week! We then phoned her original Orthopod (Dr V) with the permission of Dr Y. Dr V’s receptionist informs us that Dr V will only see Vic with the written consent of Dr Y. We tell her that Dr Y is too busy to write a letter but has advised us to get Dr V to phone him (Dr Y) if he needs to speak to him. “We will not even allow you into Dr’s rooms without a letter. Doctor V is too busy to phone. Get a letter if it is so urgent for you to see Doctor!”
Well!!! What the hell do you do? You cannot force a receptionist to allow you to see a doctor. Even if you force your way into the consulting rooms you cannot force a doctor to see you.
The fact that Vicky is terminal does not give any doctor permission to wash their hands off her. It is written into our Constitution that every citizen of this beautiful country has the right to medical care!! “In terms of South Africa’s constitution each person is entitled to human dignity, equality and freedom. This should also be the case when a patient receives medical treatment in the private and public sector.
The Government has an obligation to protect the life of every person in South Africa. The patient has the right to receive medical treatment.”
I promise anyone who cares to read this or hear me: if there is permanent damage to Vic’s arm, I will sue both doctors, regardless of her overall medical condition.
Tomorrow we will see Vic’s GP and hopefully she can get Vic into an Orthopod’s rooms! Why only tomorrow? She is too fully booked today to see us today…
Today I had a message from Dr Jaffer Hussain asking whether the Jurnista is working. Not only did he care enough but he asked whether I wanted him to ask Prof Froehlich to motivate Hospice?
I received a message from my brother today that read:- Often when we lose hope and think this is the end, GOD smiles from above and says, “Relax, it’s just a bend, not the end!”
Is there hope after all? I am cautiously optimistic!
Tomorrow afternoon we see the Urologist. Strangely I am at peace about Jared. God cannot be that cruel so I trust in a positive outcome!
JD (Jared’s Dog), is 15 years old and suffering from 3rd degree congenital heart failure. In human years JD is at least 105 dog years old. She has been such a healthy little dog but is now starting to battle. She coughs throughout the night and end up sitting upright to breathe easier. When I get home she is so excited that she has a coughing spell.
JD follows me where ever I go. If I step back I step on her. She sleeps in my room. JD and I have a system worked out. When I come out of the shower she is already waiting for me. When I go downstairs, with her in tow, her little tail is wagging and she is clearly very excited to see what little snack she is going to have. I know she is not supposed to have little snacks but heaven helps the person who tries to feed me hard, dry biscuits when I am 105 years old!
I do not want JD to suffer any further. Tomorrow morning she will go to the parlour one final time. In the afternoon she will have an injection at the vet and gently drift off to Doggie Heaven. Vic and Jared want to go with her.
I am a coward. I do not have the resilience and strength to take her.
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.
At nursery school Jared started injuring ligaments, twisting ankles. It got worse as he tried to participate in sport when he started fracturing ankles. At age 13 he was diagnosed as diabetic. On 27th of July Jared had a Nissin repair https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/ and https://tersiaburger.com/2012/06/28/a-vicious-cycle-of-nerves-2/.
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.
I know that I would do all things for you.
My spirit would always take care of you.
And when I die and leave this world behind.
You can be rest assured that my love will stay behind.
Even though sometimes we’re far apart.
You have always remained right here in my heart.
I will forever whisper in the wind
Unconditional love that’ll forever stay within.
If only I could go wherever you go
So I could do things I need to do for you.
Since I can’t, the best sacrifice I can give
is keep you in my heart and allow you to leave.
I’m lifting up the burden in your heart
‘Cause I know that you don’t know where to start.
I’m transferring all the pain inside of you
Into my care, into my heart, and now it’s through.
I love you so much and I know that I can bear
This greatest pain to let you go, I swear.
Know in your heart that my love will forever stay
Even though I would seem so far-away.
I’ll be your strength that’s why I’m relieving you
Of all the pain and tears inside of you.
No need to worry for all your pain will be gone.
It will be with me now, and I shall carry on.
You may think I’m letting you go without a fight.
If you only knew how I fought for you each night.
Just remember that there are signs everywhere.
So look around and acknowledge that they are there.
God said to me that love will always prevail.
And each day there is a tale for you to tell.
If you could already see the signs before your eyes.
Embrace it now. Let it stay. It is your guide.
God said the signs may be a word or two
When you least expect it, it is said to you.
It may also be the people that you have met.
Places, names, or things that you kept.
God told me to tell all these things to you
So happiness would set in and peacefulness, too.
I’m always here, and I’ll always love you.
I never wanted you to be in pain. It’s OK for you to go.
May This Ramadan be as bright as ever.
May this Ramadan bring joy, health and wealth to you.
May the festival of lights brighten up you
and your near and dear ones lives.
May this Ramadan bring in u the most
brightest and choicest happiness and
love you have ever Wished for.
May this Ramadan bring you the
utmost in peace and prosperity.
May lights triumph over darkness.
May peace transcend the earth.
May the spirit of light illuminate the world.
May the light that we celebrate at Ramadan
show us the way and lead us together on the
path of peace and social harmony
Wish you a very happy Ramadan Mubarak
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!
I woke up early this morning with a very heavy heart. It was Pain Clinic Day again. There is no appointment system – it operates on a first come first serve basis. Wonder above all wonders no traffic delays… I was first to arrive!!!
The amazing thing is that one of Vic’s ICU doctors ran the Pain Clinic today. He immediately recognised me and we spent an hour discussing Vic. He looked at her X-rays and was mortified by the fracture. He was so sympathetic. Over the past 5 years he has often been part of the ICU team fighting for her life. He is well aware of the prognosis and confirmed that the arm would be terribly painful and that there was no chance of it mending. He knows exactly what her little body has been subjected to over the years.
We will try an additional tablet, Jurnista, which apparently works on two different pain receptors. “Hydromorphone controlled-release belongs to the family of medications known as opioid analgesics (narcotic pain relievers). It is used to treat chronic severe pain. Hydromorphone works on the brain to increase the ability to tolerate pain. Hydromorphone controlled-release works by gradually releasing the medication into the body to help control pain that requires the prolonged or continuous use of an opioid pain killer.”
The side effects seem severe. But he double checked with the head of the department so I am sure they know what they are doing! I know that I will not have a peaceful night’s sleep at all! But so far so good – it is a slow release tablet so no effect at all yet. Oh, I forgot – it is highly addictive!
I am cautiously optimistic! Just a little reprieve would be great!
Poor Jared. Just when we thought he has recovered so well from the Nissin Repair, chest pain strikes again! (Nissen fundoplication is a surgical procedure to treat gastroesophageal reflux disease (GERD) and hiatus hernia. http://en.wikipedia.org.)
Jared was born with a reflux problem. He was the best projectile vomitter ever! As he grew older he stopped vomiting (in public) and never complained. He then started chewing Rennies. No matter who he went shopping with, he always came back with a pack of Rennies. Obviously nobody reconciled his Rennies intake… Until he developed chest pains!
Long story short is that after six months of treatment, the decision was made to do the Nissen repair. I may have blogged how well Jared did post-operatively, how brave he was and how wonderfully he recovered. So it came as quite a shock when I received a call from school yesterday asking me to pick Jared up as he had severe chest pains again…
We spent the afternoon at the doctors. Chest X-Ray, ECG and then a CT scan. CT showed up several kidney stones… Average size 6.6mm. The chest pain was caused by something called Costochondritis. Costochondritis is inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone or sternum.
Today Jared went for blood tests. Once the results are back we will start seeing some specialists to resolve the kidney stone and calcium build-up problem. The Dr suspects Jared has either an autoimmune and/or connective tissue problem.
I was thinking today, that if we only have one life, how come it is so crappy? Why can I not be the ill one? I have made many mistakes in my life and stepped on a couple of toes in my career. People love me or hate me. Vic has never deliberately gone out to hurt anyone. She was born with this dreadful disease. And now my beautiful Jared… I could not bear going through this again with him. He has such a pure heart. The scariest thing is that he has witnessed his mother’s struggle and steady decline over the years.
There are times that Vic cannot remember – the times that she was in ICU, ventilated, sedated, critically ill – all of this the boys lived. Vic does not know what tomorrow holds but if Jared is diagnosed with OI he will know exactly what lies ahead of him. I see the helplessness in his eyes when he looks at her. I hear his frustration with her battle… Please, if there is a God of Mercy, let Jared be spared this.
Tonight I am not in a happy place. I spoke to the UK kids and feel content that they are settled and doing well. Spoke to the little ones but the longing is worse than ever. Chloe graduates tomorrow. I am not there to share this milestone in her life.
Life sucks.
Some people take their time and linger. Some people get it over with quickly. For some dying is hard work. But all of us are heading towards the same destination. Passing through our physical stages of dying. Into death…
“Hope provides us with the psychological and emotional energy to accomplish what those without hope often considers the impossible.”
The journey of dying has many stages – I have heard it called check-in stations. I know that some people bypass some of the stages/stations. Some people take their time and linger. Some people die quickly and easily, like my beloved Dad and best friend Marlene.
My dad suffered with a terminal illness called Alzheimer’s. It was dreadful seeing that proud, dignified man’s brain slowly degenerate. He lived with us for the last 18 months of his life.
After a year we decided to employ a full-time caregiver to keep Dad company and to assist him with daily tasks such as showering etc. On the 28th of April we had a wonderful day with all the kids – our annual Easter Egg Hunt. Dad played with the little ones and at the end of the afternoon abruptly got up and walked off. We let him be – he got tired of people and confused after a while.
An hour and a half later we walked one of the kids to their car and found Dad on the little bridge outside his flat. He had fallen and was unable to get up by himself. I remember thinking that I would have to move the bridge. Obviously my Dad’s balance was deteriorating. I also remember thinking that it was such a pity about the bridge – it was such a pretty feature in the garden…
On the 2nd of May 2011 Dad’s eyes are clouded over and he slept all day. He recognized no-one and his legs no longer received the walk commands… Every time he got out of bed he would fall. I was sleeping on the second bed in his room so I could hear him get up. I would put my arm across his chest so I would wake up when he moved.
On the 4th of May 2011 Vic was admitted to hospital for operation number 80. On the 6th of May Vic spent 6.5 hours in theatre with her colostomy reversal. The first time ever Brendon Bebington did not use the dreaded words – “I am cautiously optimistic” However in true Vic form Vic went back into theatre on the 7th of May for another 3 .5 hour procedure. Richard, the anesthetist, inserted the needle into the wrong vein when they mainlined her… Vic had asked him to try and avoid getting her hair all elastoplasted. Even the pain of the Elastoplast in her neck is too much post-op. Apparently it is not a common error but it happens. With Vic’s blood clotting problems is was a dangerous little exercise getting the needle out of the artery…
By the 9th of May I was absolutely exhausted. I had been unable to spend any time with the boys. And they really needed me. Between Vic/hospital/work/ Dad and the boys I was absolutely torn.
That night I did not hear my Dad get up during the night. He fell again. We managed to get my Dad back into bed but at 12:30 the next day Dad fell again and this time he was hurt badly. Dad was admitted to hospital and due to the need for 24/7 care was admitted to ICU. Whilst Dad was being admitted I had a phone call from my best friend Marlene’s mother saying that she found Marlene in her room, she thought Marlene was dead. Thank God Danie was with me and he stayed with Dad when I rushed off to Marlene’s.
My dearest friend was dead. She had simply had a heart attack and died! I had tried to phone her from the hospital to tell her about my Dad whilst she was dying herself!
The next day I met with the medical team. Dad appeared to be in a coma. The physician said that Dad had pneumonia. The Neurologist confirmed that Dad was in the Severe advanced stage of Alzheimers. The Specialist surgeon wanted to operate on my Dad’s aneurysm.
I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia. There would be no operation. The Physician agreed with my decision.
On the 13th it was my dearest Marlene’s funeral. The next day I discharged my Dad from the hospital and brought him home. We had received the Hospice bed and Hospice had evaluated and accepted dad as a case. On the 16th Dad had a lucid visit with Ester and Yuri and Hospice started administering Morphine, Dormicum and Serenace subcutaneously. Dad battled to swallow and I was pretty distressed about his liquid and food intake. Dad’s core body temp had dropped to 34.5 degrees C. Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake. On the 17th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …
I played his favorite classical music and tried to keep him comfortable. I treasured every moment that I sat and listened to his labored breathing but I was at peace. There was nothing unsaid between the two of us. Yet I was so sad…I did not expect it to happen that soon.
On the 20th of May my Dad lost his battle against Alzheimers when he forgot how to breathe. Twenty three days after his first fall…
Why the detailed timeline in this post?
Some people take their time and linger. Some people get it over with quickly. For some dying is hard work. But all of us are heading towards the same destination. Passing through our physical stages of dying. Into death…
For a long time Marlene wanted to die. She did her best and yet only when it was her time did she go. Not on her timing, terms or conditions. But when her time came it was quick and hopefully not too painful. Marlene wasn’t ill. She was sick of life!
If I could ask my dad I think he would have been surprised at how quickly he died. Do I regret my decision to not allow aggressive treatment? No! I hope that if ever I am in the situation that my Dad was in someone would afford me the mercy to allow nature to take it course!
Vic has lingered for 10 years… It is really hard work for her…
” I’m going to smile…and make you think I’m happy…I’m going to laugh…so you don’t see me cry…and even if it kills…I’m going to smile.”
I think seeing Vic trying to remain cheerful and to smile through her pain is almost harder than seeing the raw pain on her face. I know Vic so well. When her voice becomes shrill and loud she is suffering bravely.
The sad thing is that Vic thinks we cannot see through her act. She especially tries this act with the boys. She will try and joke (not that she ever had a great sense of humor) and tell long winded stories. Long winded because I think she somehow loses the thread of the story along the road and fills in the blanks with words.
Even as a baby Vic used to babble. She used to lie in her cot and ooch and gooch…She was such a happy little thing. Laughed from her stomach. When she turned ten she started experimenting with her sense of humor…It was quite painful. She could never get the punch line right. At 37 she still can’t get it right.
With 80 operations under her belt Vic developed almost a manic fear for the theatre. She got to know the theatre team very well. Her anaesthetist, Richard Spark, is one of the greatest human beings I have ever met. Brendon Bebington, her surgeon, would hold her hand whilst Richard administered the anaesthetic.
Vic always insisted on telling them a joke in theatre. We would make her practice the joke for days!! Even in the holding area of the theatre we would make her repeat the joke… We would laugh and clown about to try and take her mind off her fear. Fear that she would not survive another operation and fear of the pain if she did… As they wheeled her into the theatre the tears would come… my tears. I never cry in front of Vic.
I wish I had written down the original joke and what Vic ended up telling…
It is part of the burden of having a terminally ill child. You fear tears because it may lead to breakdown.
Last night Jon-Daniel and Jared managed to have them mother shrieking with laughter. I don’t know when last I heard them laugh like that. It was amazing. For a short while the heavy cloud that hangs over our home lifted…
Today is a very difficult day for Vic. The cold is in her bones. Pain is dominating her mind and life again! My brave child is battling. Maybe tomorrow will be a better day.
Vic's Final Journey 