Month: June 2012

We have stopped living … 2.6.2012


Vic did not have a good day today.  She is in so much pain.  She is very swollen – I think it is a kidney thing again.  Swelling, headache, nausea = kidneys.  I suspect she has fractured another vertebra – quite high up this time.  (At any given time Vic has a couple of compression fractures in her spine.)  Poor little poppet- she was quite miserable today.

Jared was at Rene’s (his school councillor) home for a 7.5 hours math marathon session today!  She is an amazing individual with so much love and compassion.  She has taken Jared under her wing and sacrificed her Saturday for him!  How amazing can one be?  Tomorrow after band practice at school he will go to her again for a couple of hours of maths.  Jon-Daniel had a cricket match in the morning and spent the afternoon watching rugby with his Oupie.  Esther and Yuri popped around for tea and Esther spent some time with Vic.  I had a little afternoon nap = bliss!!!

Danie is a little annoyed with me.  He is going on a breakfast run with some friends, Esther and Leon.  He really wants me to go with – he even went and filled up my bike and checked the tyres…I can’t go.  I have this stupid fear that I may fall and then, who will look after my family?  If something happens to me – who will take care of my child?  Am I becoming paranoid?  Maybe!  I sometimes think we have all stopped living – we still breathe but we don’t live.  We have however learnt to live the day.  Yesterday we cannot change and tomorrow we cannot plan.  One day at a time.  In Vic’s case – one slow, pain-filled day at a time…

Tomorrow we will spend the day trying to convince Vic to go for the Ketamine infusion…It will be a difficult dayImage

“I would rather die than go back into a hospital” …1.6.2012


Today was another good day.  I however attribute this to Vic fearing being admitted to hospital next week (and trying to get out of it) as well as sheer undiluted willpower for the boys to see her having an “okay” day.

Vic fractured her tibia at the age of 5.  By then she was so petrified of hospitals and the plaster-of-Paris saw, that she hobbled on a broken leg for days!  Vic’s fractures seldom swell or bruise. Even as a toddler she would have to tell us she had a fracture.  Now she is refusing to go to hospital next week for the Ketamine infusion!!  Today she cried and said she would rather die than go back to hospital.  How are we going to convince her that she must go????

In the beginning of the year I promised her I would never make her go back to hospital – ever!  If the Ketamine reduces her pain by 10% it will be worthwhile!!  How can I go back on my word?  She spoke to us as a family and said she did not want to die in a hospital.  I promised that she could stay home and never go back to hospital until SHE decides that it is necessary.  The promises that I made are now causing severe stress in the boys’ lives.  I think they fear what lies ahead.

I understand her aversion to hospitals.  She has literally spent years in hospital!  At the Donald Gordon we know the nursing staff, the theatre staff, the cleaning staff, the kitchen staff, the receptionists, the pathologists, physiotherapists and radiologists and of course the ICU staff.  They hug us “hello”.

The ICU staff in particular is absolutely amazing!!  They know how Vic’s body reacts to the different drugs, the hospital bugs she is susceptible to, how weak her veins are.  They have pulled her out of the claws of death time after time.  Vic has survived medical crisis after crisis, each time with less and less of her physical abilities and dignity. She hates the fact that in hospital her body is no longer “hers”.  It belongs to nurses and doctors to touch and probe with little regard for her dignity or feelings. They have empathy with her, they know her sons and family but her body is just a commodity to them.  That is just the way it is!

It is going to be a tough weekend!!Image