Jurnista – hope or looming disaster? 19.7.2012

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. 

ImageThere 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.


For some dying is hard work. 18.7.2012

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…

via For some dying is hard work. 18.7.2012.

For some dying is hard work. 18.7.2012

Jon-Daniel, Jared, Tersia, Vic, Dad
Less than one month before my Dad died.

“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 AlzheimersThe 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 am going to smile and make you think I am happy 17.7.2012

Image” 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. 

 ImageThe 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.

Tips for dealing with people in pain 17.7.2012

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”  Leo Buscaglia

I am disgustingly healthy!  I do not get headaches, toe-aches, tummy aches, ear aches or any aches or pains.  Every five years or so I get the flu and am totally unable to deal with the discomfort or pain of flu…I will stay in bed and when I hear Danie walking up the stairs to our room I will actually start groaning.  It is involuntary.  I am a ninny.  My family joke with my non-existant pain threshold.  Yet I see the doctor once a year for an annual check-up as I did last week.

Liver, lungs, kidneys perfect according to my blood tests.  Slightly elevated cholesterol count.  Doctor says I am in near perfect health.  So how do I understand my child’s pain and discomfort?  I don’t!  If you were born blind how could you ever understand or appreciate color?

There is a very brave young lady called Katie Mitchell, who suffers from Marfan’s Syndromehttp://connectivetissuedisorders.wordpress.com  Katie gives me an insight into pain… She articulates her feelings beautifully.  Katie lives, breathes and understands pain… Katie has become my window into Vic’s painful journey…Katie re-posted a blog on pain and I found it so enlightening.  I will actually print the document and discuss it with the family.

Katie writes in red and my comments are in black:

Tips for dealing with people in pain:

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Vic is always trying to go to breakfast with Angela, lunch with Mrs Cramp and coffee with Tracey.  Vic very seldom is able to stick to a commitment.  It fills her with remorse.  She desperately wants some normality in her life.  Some semblance of a social life.  Pain and ill-health prevent it!

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.  Oh this I truly relate to…Vic sitting in the sun and crashing later, Vic trying to participate in a family barbecue and spending a week in bed to recover… Every action has a painful consequence!  As a family we dread Vic’s brave (but stupid as far as we are concerned) attempts of participating in life.  As a family we become angry, frustrated and scared when Vic tries to “live”!

3.  Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.  I never realized or appreciated this aspect of pain.  I often thought to myself Vic must be doped up, disinterested… As a family we were not aware of this aspect of pain.  Vic at times seems totally disinterested in the boys, the family, in life…

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.  Vic battles with too much movement or noise.  She becomes very irritated.

 5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.  Absolutely!!  If Vic wants something she wants it now

 6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.  Sometimes I am too scared to ask.  Some day’s I say “Oh, you are looking so great today” and Vic will reply “Oh good…” and I know that she is thinking “Tell my body!  I am feeling like death”

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.  Tonight Vic could not rub the hand cream into her little hands.  She could not pull a brush through her hair…

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to othersI think Vic is past this stage.  Her pain is debilitating relentless and never-ending!

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down).  We are past the visiting stage.

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.  Every small action elicits a “Thank you Mommy”  Reuben actually remarked that in the past Vic took everything that I did for her for granted.  At this stage of her life Vic drives me absolutely mad with all the “Thank-You’s”

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.  Vic’s pain is well-defined but at times she has referred pain.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.  We do not understand pain.  I never have pain.  I cannot imagine not being able to walk, run, work, function, drive, live due to debilitating pain.  I groan from flu-pain…I don’t know how it feels to have a frozen abdomen, fractured vertebrae, migraines from skeletal collapse, chronic and unrelenting tissue pain…. There are times that I think surely it cannot be that bad?  I don’t understand Vic screaming with pain but I KNOW her pain is real!!!

Author Unknown” http://connectivetissuedisorders.wordpress.com/2011/05/20/tips-for-dealing-with-people-in-pain/

 In addition to the above I would like to add some of my own observations…

13.  Pain makes people emotionally over-sensitive.  Vic often misinterprets what we say.  She takes things very personally!  She is almost jealous of the boys and my relationship.  She feels excluded from so many aspects of our lives.  Last week Vic said “You are the fun-Oumie.  I don’t make my boys laugh”… She is very sensitive as to who the boys ask permission to do things or go places…   It is okay because she is scared of losing everything that is precious and dear to her.

14.  Pain makes people selfish.  This is a harsh statement.  When your body is engulfed in pain it must be very difficult to see reason and to wait.  It must be difficult not to lash out at the world.  To not stop and think of the effect that your illness has on your family and friends.

15.  Chronic pain and depression are closely linked. Chronic pain almost always leads to depression:  Why?  Just imagine a life consisting of dreadful, mind-blowing, unrelenting pain?  Imagine not having anything to look forward to…  We try to set little goals for Vic.

16.  Fatigue is a definite factor.


Whether it is the pain medication or the emotional strain of coping with the pain, Vic is chronically and permanently tired.   We leave her to sleep.  We are far happier seeing her in bed than seeing her battle to walk, sit or participate…It stresses us that she gets up when she is so tired.  Vic falls asleep in a chair, the bath, the car, on her feet… We are at loggerheads with Vic in this regard… We want what is best for her…

17.  Addiction:-  Patients often fear addiction. Patients with chronic pain do not and cannot get addicted to morphine. This is proved clinically by seeing patients whose pain is abolished (with a nerve block, for example) when even high doses of morphine used for several months can be stopped immediately with no withdrawal effects. Patients who are terminally ill still often fear that they may become addicted to morphine. They and their families can be reassured. This cannot happen when morphine is correctly used to control their pain. http://www.hospiceworld.org/book/morphine.htm

The amount of medication that Vic takes is a source of great embarrassment to her.  Her biggest fear is that people will think of her as a “drug addict”.  This often prevents her from taking adequate medication. Do not even jokingly call someone who is chronically ill a drug addict…You have no idea what you are talking about!   Quite frankly I don’t care whether Vic is an addict or not…as long as she has some quality of breathing or life as she now knows it.

I wish I could research exotic vacation spots rather than “Tip’s for dealing with people with pain”  But this is part of our journey…

A day in the life of Vic 15.7.2012

A day in the life of Vic.

A day in the life of Vic

Image“Just because her eyes don’t tear doesn’t mean her heart doesn’t cry.  And just because she comes off strong, doesn’t mean there’s nothing wrong.”

My beautiful little Vic is not in a good place emotionally.  She feels that she has lost almost everything that is precious to her.  She has no future that is not encased in pain, loneliness and further loss.  Vic does not have a job to look forward to or even a shopping excursion.  There is no hope or prospect of a holiday…not even a visit to a spa, a manicure or a pedicure….

A good day is a day without vomiting too much, some time with the boys, maybe a visit from a sister or friend…

Imagine if that was all there was to your life? Imagine a life like Vic’s…

What goes through her mind?  Vic does not wallow in misery all the time.  She sleeps…Maybe it is not her body shutting down, maybe it is her mind shutting out her situation.

I sit here tonight and I am planning tomorrow.  I have to arrange for our oak tree to be pruned and treated, I have to approve a sighting system for the Middle East, inspect some armored vehicles, organize flights for some staff to Saudi, pick the boys up after school, arrange Jared’s extra maths, sign up at a gym…  dentist appointment at 09:30 and take care of my beautiful, sick little girl.

Tomorrow morning Vic will have breakfast and then 39 tablets.  The boys will kiss her goodbye and Vic will sleep again.  Vic will wake up at 11:00, have coffee and tablets.  We will try and get her bathed before the boys get home.  Primrose will change her linen and clean her room whilst I am bathing and dressing her.   Vic will have lunch and fall asleep again…exhausted from the effort of bathing.  The boys may or may not find her awake when they come home.  Vic will wake up at 15:00 and chat with the boys for a couple of minutes.  She will have coffee and tablets.  She will sleep until dinner time… Take 39 tablets….. This is her life!  The only deviation is the vomit breaks…sometimes it is a couple of bouts a day and sometimes it is at night.  Sometimes it is during the day and the night…Extra baths to clean up and extra linen changes…

Her TV remains on 24/7 but I don’t know whether she has watched a complete program in months.

Vic no longer reads, hopes or lives.  Vic no longer joins us in the TV lounge or for dinner.  She is too ill to get out of bed.

ger Vic very seldom cries anymore.  She is stoic in her lonely journey.

As parents, we try not to wallow in the bad prognosis, but we need to be honest with what the prognosis means and the inevitable outcome. We have to accept reality.  We have to guide our family through this.  Help the boys to get through this as unscathed as humanly possible!  We also have to provide an environment that will be peaceful for Vic and allow her space to come to terms with her life.

The most difficult thing for the family is however to tackle the problems of a very ill child rather than each other.

We love one another and support one another.  We will survive this ordeal as a family.  We are not perfect but who is?  We err in love.  But we love deeply and always and forever!

May God have mercy of your soul… 30.5.2012

I started this blog because I don’t trust myself to talk.  If I start crying I may not stop.  Actually I don’t have too many people to talk to.  For the past 10 years we have been waiting for Vic to die.  Initially, I think,  people believe, that holding a dying person’s hand in the final hours is  “romantic” but then the person doesn’t die…and the world moves along.  People carry on with their own lives.  That is just the way it is.  People battle to handle the emotion, the waiting, the suffering.  And it is okay for them to move on.

It is not only other peoples fault’s.  I don’t have time to visit, go for coffee, phone…  It is a constant juggle between Vic, the boys, work, hospital, pain clinic, family.  Many of my old friends must think I deserted them.  Maybe I have but time in every which way has deserted me.

I have been moved by old friends and acquaintances sending me messages of support.  Thank you all.  I had no idea that people would actually read my blog.

Earlier today I read an blog written by Michael Wolff, a writer,  where he beautifully articulates this dreadful struggle to die. He writes about witnessing a loved one’s inexorably slow, modern-medicine-propped decline and suffering that endlessly stops short of death. It is so true.  I cried. http://www.caring.com/blogs/fyi-daily/the-long-long-too-long-goodbye

Good news!  Prof Froehlich phoned yesterday and said that Vic and her situation has haunted her.  She will do an experimental “procedure” on Vic next week.  Monday to Friday Vic will go to theatre for 5 hours a day for a Ketamine/Lithium/something else infusion.  Hopefully it will erase the “pain memory bank” and her body will lose some of its opiate resistance.  That will be so merciful!!  Vic takes 400mg of morphine, in tablet form, twice a day.  She also takes Stilpayne, Panado, Degrenol, Neurontin, Buscopan, cortisone twice a day with 25ml morphine syrup every 4 hours for breakthrough pain.  The meds is not what is causing her sleeping.

Vic sleeps 95% of the time.  When she is awake it is to whimper or vomit.

Jared has started to display symptoms of severe stress.  His school marks are dropping and he doesn’t sleep.  Like me, he is awake every couple of hours to check on his Mom.  Jon-Daniel doesn’t talk.  He just carries on.  I worry about him – how will he handle The Day, when it comes?

In the movies the Judge says, when handing down the death sentence: “May God have Mercy on your soul” – I pray that God will have Mercy on our souls.  Especially on Vic and the Boys souls…