Vicky Qualifies as a Hospice Candidate…

Schedule 6 medication – 28 days supply

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.

Rest of Vic’s medication – decanted

Christa told me that Prof Froehlich had phoned her the previous day and told her that “Mrs Bruce’s mom is in trouble…”

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.

Jared at a guitar recital in 2011

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!!!

Extra tablets for your birthday….

Tomorrow, on the 31st of August, we will once again celebrate Vic’s life!  Every year, for the past 10 years, we expected it to be Vic’s last birthday.  Today I know that Vic will live forever.  She will continue to fight for another day, week, month, year…. Tomorrow we celebrate life!!

Tonight I sat doing Vic’s medication for the next 24 hours and I popped an extra Jurnista into tomorrow morning’s tablets.    Janis Ian sings “and in the winter extra blankets for the cold…” and I sing ” and on your birthday extra tablets for the pain…..  My gift to Vic an extra tablet so she can a better day.

So, on the eve of my child’s birthday I am sitting thinking of what my prayer for Vic would be if I still knew how to pray.

I would pray for adequate pain relief.  I would pray for some quality of life time for Vic with her boys.  I would pray for Vic to have financial independence.   I would pray for Vic to have peace of mind.  I would pray that Vic would have enough faith in her dad and I to know it is okay to let go…the boys will be safe with us.

I do thank God that Vic is still alive.  I thank God for Dr Jabber Hussain and Jurnista.  I thank God for Vic’s incredible boys.  I thank God for the brave decision that Vic made not to have further surgery.  Above all, I thank God that Vic is home.

Tomorrow Vic will have a busy day.  She has a 08:00 breakfast appointment with Lee, a 10:00 manicure booked by Esther, afternoon tea (at home) with Robbie Cramp and then dinner at a restaurant of her choice with the boys and us.   I know it will take a superhuman effort but I have “rests” scheduled for the birthday girl in between events.

What is a relatively quiet day for us is a marathon for anyone as ill as Vic.  I know that she will try so hard to survive the  birthday and the party day.  Somehow I don’t think she will manage it all.  I just hope that she has a good day so she can spend some constructive time with her boys.  They will need to remember this as a good birthday in years to come…..

On Saturday we will celebrate all the August/September birthdays.  Vic on the 31st of August, Henk on the 2nd of September and Tom on the 4th of September….  I hope Vic will be able to handle two busy days in a row.  Maybe the birthday high will carry her through it!

We have a family tradition of doing “birthday eulogies”.  Everyone present gets to say something nice about the birthday person.  Over the years I have told Vic how brave she is, what a fighter she is, how beautiful she is.  This year I will I will merely thank her for being here!

Everything else has been said.

Happy birthday baby!

Vic is going to Italy

I sometimes think Vic will live forever.

Vic has been doing so well. Ever since the arm surgery she has coped well with the arm and the pain. The Jurnista is truly a miracle drug!

On Thursday Vic went out for coffee. She drove her own little car… it was less than 2 kilometers but she drove! She was exhausted when she got home but she did not “crash”! She fractured another vertebrae on the 12th of August ( ) but she is coping with the pain! She handled an emotional crisis well on Saturday and today she dished up her own lunch! It is remarkable that she is doing so well. Two months ago I was at my wits end. Vic was totally reliant upon me for everything! Due to the Jurnmista she has started taking back her life… Slowly but surely!

We have started planning our December vacation. Danie and I will take the boys and Henk to Germany for a two week vacation. Vic want’s to spend a week on her own and I want her to go to a Spa for the 2nd week… In the European Spring Vic and I are going to Italy!!!!

Life is great!


Mommy I broke my Back!!

Vic as a young Mommy!

Vic has had an absolutely amazing week.  Her pain has been beautifully controlled.  We have had severe bouts of vomiting and cramping but compared to a month ago – it was a walk in the park!

The Jurnista is definitely working!  I have an appointment with Prof Froehlich on Tuesday, the 14th of August, and she will then give me feedback on Hospice.  I was completely prepared to tell her I don’t need Hospice on any level anymore.  Vic’s pain is so well under control that I can handle her care with no assistance or problems at all.

My baby sister (she is only 55 years old) Lorraine, spent some time with us over the long weekend in-between umpiring at the South African National Netball Tournament.  She was amazed at how well Vic looked.  (Remember she last saw Vic when she fell at the end of June).  Vic has been amazing.  This week she has been far more mobile.  She started thinking (arguing) about driving again…..  The first time in months!

This morning Vic went to breakfast with her friend Angela.  She was so excited.

Two hours later Vic literally shuffled into the house.  “Mommy I broke my back!”

My heart stopped.

On a certain level I am angry.  I am angry that Vic wasn’t more careful.  I am angry that I slipped into a false sense of security!  I am angry that the Jurnista is masking the pain so well that Vic is pushing her body’s boundaries.

Conclusion:  Vic is still a very sick little girl.  The fact that her pain is better controlled does not mean that she is well.  If any of us had spent the amount of time vomiting and cramping that she has this week we would be in bed hooked up to an IV and praying for death.  This week Vic’s amazing resilience again amazed me.  She is strong beyond comprehension!

My heart bleeds for her that her fragile body has once again failed her incredible will to live.  It is clear that she is merely holding onto life, as she knows it, with her fingertips……

I will go to the meeting with Prof Froehlich and continue my fight for Hospice to become involved.  Vic will never function on any level again.  She is confined to bed relying on medication to keep her sane.  Maybe she will have a good couple of days here or there but her sentence has not been commuted.

Vic Olympic Champion

Yesterday we did not see the GP for Vic’s arm – she was just too exhausted to get out of bed.

We arrived at the Urologist at 14:30 and low and behold he is at another practice in a different suburb.  The receptionist gets such a big fright because of the size of Jared’s kidney stones that within minutes she is busy arranging theatres for emergency surgery!  Eventually I got her to HEAR what I was saying – the kidney stones are not obstructing the urinary tract!  A new appointment is scheduled for Jared to see the Urologist on Monday.

We arrive home and the doggie parlor people had not picked up JD for her final pampering session.  Anyway she had a better night the previous night and all of a sudden I am doubting my decision about sending her to Doggy Heaven.  Maybe this is a sign that it is not her time!

With minutes to spare, just before I add garlic to dinner, my wonderful, caring friend Gillian arrives.  (Gill is allergic to garlic and 1000 other things…) Out of the blue with armloads of gifts…  A lavender plant and lavender hand cremes for me (to calm me down), rusks for Danie, chocolates for the boys and waterless Magnolia hand sanitizer and linen stray for Vic!  How precious is my friend?  She read my blog in the morning and decided that I need moral support!

So, egg on my blog face… JD is still walking around, Jared is in high spirits because he is not in theatre and after such a bad start Vic is having a good afternoon.  (The Jurnista is working so well!!!)

I was so happy to see my friend!!

Gill and I, over a cup of tea, are sitting discussing Jared’s situation when she asked “Who is his Urologist?”  I told her that it is Dr S; he is new in Alberton so we were able to get an appointment quickly… Gillian went white!   In her clipped manner of speech she declared “Over my dead body!  Do you know what he did to Sandra, (her sister-in-law)?  He left the plug in her when he did her bladder repair 6 weeks ago!  Sandra nearly died!”  Gill then proceeds to tell me that at Sandra’s book club meeting the girls were discussing Sandra’s operation.  Naturally the girls wanted to know who the surgeon was and guess who?  Yes, Dr S…  That apparently triggered two more of the ladies relating their stories of severe sepsis, after urology surgery, to their husbands and the urologist was…. Wait for it….. Dr S!!!!!

There is a God!  Imagine if Jared went into theatre yesterday and he was Case No 4 GONE WRONG???

I had just started writing this posting today when the phone rang and guess what?  Dr Y’s receptionist was on the line.  Dr wants to see Vic… With the speed of lightning I dressed Vic in a tracksuit and sped off to the Doctor’s rooms.  The receptionist nearly fainted when she saw Vic’s hand… After a couple of minutes she said if we had not lived close to the consulting rooms she would have told us to come in on Tuesday next week… she did not feel like working late and yesterday she cut down on the number of consults he was doing because she had stuff to do…!  Obviously her conscience got the better of her and she told him Vic had phoned.  He told her to get hold of Vic to see him today still…

The doctor was shocked when he saw how swollen Vicky’s hand is.  He took the cast off and the arm is extremely bruised and very, very sore.  We had a long discussion and the decision was made that there is no alternative but to operate.  Vic will check into the hospital at 08:00 tomorrow morning and he will operate at 10:00.

I am very concerned about the danger of sepsis.  Obviously Vic will go onto strong antibiotics but she already takes antibiotics every day of her life.  As a matter of fact she takes antibiotics twice a day, every day of her life.  She already has sepsis in the spine and abdomen.   I do however realize that there is no other option but to do the arthroplasty surgery.

I am however concerned that a silly little girl can decide how many patients a doctor can see a day not because of his time constraints but her nail appointment at the beauty parlor…  I am very concerned that a receptionist can play God and could cost my child her arm.  Yesterday it would have been a standard surgery but now it is emergency surgery that has to be performed on a Saturday morning.  What a country we live in!

What on earth can make a doctor appoint such an airhead in his practice?  We end up with a silly young woman who do not realize the importance of being able to distinguish between a patient needing to see a doctor urgently and her +*%&% nail appointment!

I have tried to Google “humerus + sepsis” but the articles I found were just too complicated for me to understand.  So, in faith, I will accompany Vic to hospital and try to get her through the post-op pain and onto the road to recovery.  I can only hope that she will not lose too much functionality

I am watching the opening of the 2012 Olympics and am filled with deep sadness for Vic and other people in similar situations to Vic’s.  Somebody else’s sons and daughters, the perfect athletes, competing for the top sports awards of the world….  Dreams will be realized or shattered.  There will be tears of joy and tears of heartbreak…

Vic has never been able or allowed to do any sport.  People of her age are still climbing the ladder to success.  Vic has never really worked or climbed the corporate ladder.  Vic’s life is over without it ever really started.  Vic literally only knows tears of pain and suffering.  However if there was an Olympics for pain, suffering and endurance, my child would take gold!!

Vicky Bruce, Champion of Champion in the Pain and Suffering Race!   All time winner of Survivor OI.



Relax, it’s just a bend, not the end!

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.

Vic and JD watching a movie