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GLIOBLASTOMA MULTIFORME STAGE FOUR. VIOLENT MOOD SWINGS AND BEHAVIOURAL CHANGES

beautifulhope
Posts: 4
Joined: Aug 2013

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?

 

 

 

m.nabil
Posts: 1
Joined: Sep 2013

Dear Ruby,

1st off please if you do like to speak /chat generally about your fathers case we are in the same boat though some differnces i see you are much sad so realy if you need someone to speak with i can do for hours =)

i`m in the same condition as you i`m a 30 yrs old (Egyptian) caregiver for my 57 yrs mom who was diagnosed 15/6/2013 with a GBM IV tumor

My mom mood has changed abit  towards aggression but she is still 100%  i feel she is just in that Foggy state but thank god she is holding onto hope.... we told her "somehow" that this tumor was dangerous and there is a risk if it came back...

about prognosis this word is SICK, of the majority of people i have red about the doctor are ALWAYS wrong unless the patient is already in a very poor condition!!! all other speculations they make is wrong!!! every single case is tottaly different for many known medical factors and some only god knows factors

the Mood changes(which medically and psycologically contains many types aggression, paranoia) all such things generaly can appear with any "playing around" with the brain , i`m not a doctor i`m layman. but i have red MUCH hundreds of hours like crazy analysing 1000s of webpages clinical trials, former 100s of similar cases, hopeful approaches like nutrition and supplements.

trust me what you are doing is the best for your father.. and what hurts you like extreme aggression and paranoia is just plain common in most Brain cancer patients...

but what can i tell you is look at the bright side.. Brain is an amazing thing it can heal itself provided that you follow simple stuff many doctors give to overcome short memory loss anger etc...

they call all this paliative "care" you have to fight back all this..

any bad stuff due to over aggression u can contain with nice words..

don`t forget that you dad is still the same guy he has a smart brain that analyzes data its just for an external reason it had some confusions, emotional mess that you can counter

 

my mom sometimes rages and her voice grows 3x the normal but with logical calm arguments absobing all that  i swear to god her logic battles all this confusion and in 30 mins she is  like an angel ... we tried before (me and my father) going the dumb way and the result was very bad her mood will worsen if you just replay word by word (i mean trying to argue with her)

please remember that and bear in mind that following this even if he said you are horrible or so just stay calm and replay kindly like "i`m trying to improve, or i`m doing my best i thought to comfort you" and in some time he will rationalize the whole thing again

 

as i said i`m not a doctor but i`m in the same boat... if you feel desperate then i suggest you alone contact psychology doctor....

last thing i might be from a different culture but if your dad can walk and never had major problems staying by his own... why the hell is the terrible "Hospice"????? i have seen and red about ppl having thier family in this useless emotionally shocking place for 1 yrs+ !!! how many years we have to spend -with brain tumor or without- ..

 

did your father know of the 2 months prognosis? or its the stupid "astrology" doctor who told him ?

i can`t imagine how such doctors with all this propagnda and news about the rule of palitive care goes right to the patient and tells him i`m sorry you have 2 months!! regardless of whatever you do :(

You and him must be cheerful and happy he is breaking that shiiity claims they said... he is good... NO TUMOR NO RECURRENCE. CHILL you must be happy!!!

 

please i ask you one thing.. if your dad in 2015 is still alive (may god keep you together to 10s of yrs) how would u look at such desperate and black days you were for no reason! as i can see in your tone?

 

last thing i ask of you is, did you check / read of any clinical trials? you can consult your doctor which trial suits him (immunotherapies, or Tocagen or Novo TTF) and just continue your fight! fighters live much longer if it weren`t for any medicine then its for the Human will to live and HOPE (and not HOSPICE)

please be positive and if you aren`t yet convinced that your attitude (towards yourself) should be differnet think only that what you speak of are just plain side effects that can over time .... there is 100s of ways to recover/ battle those mood changes

 

cheers from egypt

Mohamed nabil

beautifulhope
Posts: 4
Joined: Aug 2013

Thankyou for your kind words, it comforts me to know that  am not alone in this.

It is a hard battle, but I have had to do a lot of growing up over the past year. My father only goes to a day centre at the hospice so it is more of a, few hours of mental stimulation with people his own age(even though he is confused). I will not be putting my father in a home or hospice any time because this is something I do not want to do.

 

My heart really goes out to you with your situation and your words have really touched me, tomorrow I will be calling my doctor to ask about tests on alzeimers or dementia as my father does not even know who I am, today he called me 'mom'! I have been reading a lot of peoples cases and although people have had mood swings my dads mood swings are every day and is constant- I have heard that some people with this condition have mood swings but have some form of realisation of what they have done. My father is unable to think or do anything, a once very independant man can no longer drive nor function in normal everyday life.

 

My heart goes out to you and my thoughts are with you x

OMAR24yr
Posts: 1
Joined: Sep 2013

Hey buddy my names Omar im 24yrs old i have one brother n my mom and dad . This Jan.2013 on a morning at 6am i got a Phone call from my brother screaming telling me to hurry home its DAD! Bro! worst thing i ever heard someone say! So my father had a ceizure and we rushed him to the hospital n the MRI showed a golf ball sized shadow in my dads brain. To remind u my dads 51yrs old was always healthy, ahtletic, owns has his own company with his brother n just n overall MUFASA to me! He is my Lion!! So when the Nuerologist diagnosed my dad with GRADE 4 (GBM). He already had surgery at UCLA RONALD REEGAN MEDICAL! They removed 95.9% of the tumor! He recovered well did radiation n chemo, within the treatment we had 3 MRI's now the first 2 came out find, 3 weeks ago from this message the last MRI was taken n it showed the tumor growing back!! Practically they increased the dosage of chemo n we even tryed a new study that the Dr. offerd us. It was a medicine for breast cancer but the concentrates in that somehow would kill the cancer cells due to other current studys on other patients. Well! it didnt work for my DAD so... we thought of taking my dad to the Houston, Texas cancer center that has a great reputation! but they said my dad didnt qualify!! that everything they have treated him with here is just the same that they will do there i was shocked!!!! Even the Dr. said at this point just have faith!!! which i do!! but im scared!!Its hard with my dads tumor is located in his Speech n Movement area of the brain so i have to help my dad WALK!! And he cant really TALK! he cant spit out words n he lost strength in his right portion of the BODY!! When i saw myself picking up my Dad down the stairs cause he couldnt go down them my soul chattered to c ur Shinning armor, MY DAD!! Going through this!!       Now!! i didnt say im giving up!! no way! thats something my dad always told me! SO i did some research n i have my dad taking Cannibis oil twice daily by mouth! we just started this week n plus its natural!! To top it off my mother is super religous so it was a bit of a fight to get my mother to agree to the treatment! but to the way things are, running out of options it wouldnt hurt right! so i have my faith with the man above and just so u know there is always an alternative route! feel free to ask me anything im here to give my best support to others!! im young but im strong!! like my DAD! so i have faith!! this new treatment will help my father!! I wish u the best and i will prayer for your dad just keep your head up!! n dont quit! on him! it will be a hard road but its only going to make u stronger n your DAD needs you more then EVER!!!! keep in touch.

beautifulhope
Posts: 4
Joined: Aug 2013

Reading your story, really made me cry-not in a bad way just my heart goes out to everyone who is going through this. I feel like I am so alone and so isolated, I have no other family here in the UK to give me support through this and being young?, well my friends have pretty much abandoned me due to their lack of understanding about what I am going through. " But the tumour has been taken out. so he doesnt have cancer any more Ruby" they always say to me, but they don't understand nor get it that my daddy is sick he is ill and I just reccently lost my mother. I live my life in loliness and isolation, but what is a few days,months,weeks or years outta my life just to try my best to have my dad around as long as possible.

I have done my research too on this cannabis oil, I heard that it is good. I am scared though because, sourcing such things in the UK can be sketchy to say the least. Then theres always the whole, is this real stuff how can I trust it?,How do I know if it is the genuine article? and all the tutorials online how to make it but it is dangerous to do so and it is a bit like playing russian roulette when it costs a lot of money to obtain it here- I am scared because?, well because it's just me- I have no family to ask for guidances and sometimes feel that I have my someones life literally in my hands. I had the responsibility of signing the paperwork in order for my dad to go ahead with surgery and so many responsibilities.

My mother told me years ago " Life would be monotonus without problems" I guess she was right, but it makes me think a lot why do all the good people go through so much suffering? my heart genuinely aches because I wanna help and reach out to you all individually, tell you 'thank you' for making me realise I am not alone and I pray every single day things will get better.

Never give up,I hear so many stories about people surviving for many, many, many years- it is sheer strength and determination.

Even though my dad is not compus mentus I think subconciously he can pick up off my energy that he knows that I love him, regardless of all his strange behaviours and agressive nature reccently. I am now fighting a different battle as here in the UK social services can take away people underneath the mental health act, even though my dad is not mentally unwell they have deemed him so and have no care about his cancer, so I am now fighting for my father to be with me.

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