Aug 31, 2013 - 11:04 pm
Hello All, I write this down to you at an un-godly hour at approximately 3 am United Kingdom time!I guess I am up scouring the internets sources on Glioblastoma Multiforme, trying to grasp and understand each fine detail.
My name is Ruby, I am 27 years old, but those silly details do not actually matter- but what I am here to do is go by the faithful old sayin' "if you don't ask, you don't get"
and I am asking all you very lovely people on this forum, to provide me of your words of wisdom, your stories and hopefully? some of your friendship? but I am reaching out to everyone here today, not for help but for your KNOWLEDGE, because I am flying in the dark with all of this right now... so let's proceed.
I am scared,lost and all alone in all of this- I have lost friends, and live my life in pretty much isolation, my mother passed away one year prior and now my father has cancer, I am at loss,vunerable and need all the advice and knowledge I can get hold of- in order to know. My fathers mood swings scare me. Below is my story,please forgive me for what appears to be a ridiculously long essay but I have no one to turn to, also please forgive me for my terrible spelling errors, it is gone past 3 am here.
My father was diagnosed with GBM 4,last year september 2012- I recall that over the past few months previously there was slight behavioural patterns, forgetfulness,confusion,slight adgetation and slight agressive mood swings. I intially put it down to thinking it was forms of emotional depression due to my mother dieing the previous year,but then things started to get worse those things,I mentioned prior was only a mole hill compared to the mountain of awful personality changes and not to forget scary personality changed which were in store for me. That September, my father sat with me watching television he started asking me strange questions "Why is the television melting?", "where is the ticket for the television?" and then he pointed to a blanket, then told me to "pass the apple"- he then proceeded to try and get out of his seat but just couldn't move; this was it my first time to ever call for an ambulance- my dad was put in hospital,after a series of tests he was diagnosed with a u.t.i and arthritic infection that was supposedly causing him 'delirum' BUT something told me, there was something more to it then just infection. And so I decided to talk to a doctor, I mentioned that I thought he had alzeimers or dementia and that sometimes his personality changes were literally so terrifying I was scared for my own life, I ended up breaking down in front of this doctor a complete stranger but, she told me she would investigate and that was the most satisfying piece of news to me I ever had- they did a brain scan to then find that horrible,horrible evil thing the dreaded tumour! THIS TUMOUR explained my dads excrutiating headaches over the past 10 years, that of which his personal g.p would just fob him off with a couple of painkillers and send him off home,my father suffered from HIGH BLOOD PRESSURE.
I have read and heard a lot of stories in relation to High Blood Prassure and Brain Tumours(I wanna know your stories)
I was then told my father had the big 'C' but was never told that he had GBM until further down the line(I will get to that later)- so me being the bone idle young person that I am decided to just merrily go about my business watching youtube videos and doing whatever young people do and not actually sit down to read about brain tumours nor ask a single question about these things- all I knew was my dad had cancer and I would be by his side all the way(my biggest regret in my life was not being around when my mother dieing) now, My dad had the surgery to remove the brain tumour and then 6 courses of radiotheraphy, then steroids a longside his blood pressure medication, I was pretty much left in the dark with everything AND STILL AM!- My dad seemed pretty normal, the father I remember from when I was a kid BUT then there was the rapid decline- scary daddy came back, violent mood swings,disruptive behaviour,agression,depression and confusion- he was then put on olanzapime 5mg one morning and 10mg at night.
I WANNA KNOW-ARE THESE MOOD SWINGS,BEHAVIOUR PATTERNS NORMAL?Because 'scary' daddy has also become confused,incontinant,restless, strange behavioural patterns and delusional it has become completely a living little nightmare for me, I adore my dad he is my only family and it may come across as I am complaining but this is not the case, I am simply just a 20 something SEEKING ANSWERS AND ADVICE THAT THE PALATIVE CARE NURSES DON'T WANNA HELP ME WITH!
IS THIS NORMAL?BECAUSE ALL THESE SIGNS, POINT TO DEMENTIA OR ALZEIMERS-DO YOU THINK THE ANTI-PSYCHOTICS ARE MAKING HIM WORSE? OR CAN THERE BE A POSSIBILITY HE MAY HAVE DEMENTIA OR ALZEIMERS ONTOP OF HIS BRAIN CANCER- HE HAS HAD 3 CT SCANS AND 1 ADDITIONAL M.R.I AND ALL HAVE NOT SHOWN THE TUMOUR GROWING OR ANY SIGHT OF THE TUMOUR. DESPITE ALL OF THIS MY FATHER WAS ONLY GIVEN ANOTHER 2 MONTHS TO LIVE AND THAT WAS LAST YEAR! HE HAS SURVIVED STRONG AND FIT(ALTHOUGH NOT MENTALLY) FOR ALMOST ONE WHOLE YEAR! ADMITEDLY, THINGS HAVE GOTTEN WORSE- I FIND HIM SLEEPING ON THE FLOOR,HITTING ME,CALLING ME HORRIBLE THINGS,FORGETTING WHO I AM,ASKING FOR HIS 2 YEAR OLD DAUGHTER(WHICH IS ME)- HIS LONG TERM MEMORY SHARP AS A WHISTLE.. EVERYTHING ELSE IS DOWN THE TOILET. I LOVE MY DAD SO MUCH, I WASH,BATHE,CLOTHE,FEED,TALK TO HIM AND LIVE MY LIFE 24/7 INDOORS,WELL APART FROM ONE DAY A WEEK WHEN HE GOES TO DAYCARE AT THE HOSPICE HOWEVER, I FIND THAT EVEN AT THE HOSPICE ALL HAVE CANCER BUT MY FATHER IS THE ONLY ONE WITH BRAIN CANCER AND THE HOSPICE THEMSELVES CALL ME UP EVERY FIVE SECONDS MAKING ME FEEL LIKE MY FATHER IS A NAUGHTY CHILD, AND THAT THEY ARE UNABLE TO COPE WITH HIS BEHAVIOURAL PROBLEMS- SO THIS BRINGS ME TO QUESTION IS THIS NORMAL?