Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Personality changes and how to help

Chrisc31
Posted by

Is anybody going through this or helping a loved one who seems to have personality changes as I feel I need to talk to someone finding it hard to be supportive to my partner 

latchbrook
Posted by

Hi and welcome to the online community

Although I don't have the experience you're looking for I noticed that your post had gone unanswered. 

I wondered if you might like to join the carers group which is a safe and supportive place to discuss your worries and emotions. To join just click on the link I've created and then select 'Join This Group' on the page that opens.

Sending a supportive ((hug))

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Rebecca44
Posted by

Hi Chris,

I can completely relate to how you're currently feeling. My dad was diagnosed with stage 4 Glioblastoma May 2017 and one of the hardest changes throughout all of his illness was how much his personality changed. Before, he was always joking and having fun and rarely ever got annoyed due to how chilled and calm a person he was. After a few months he started to laugh less and instead became very irritable, often snapping at everyone around him. My poor mum has always taken the brunt of this anger and I could cry for her.

It's awful seeing this illness change people into the opposite of who they were before. Somehow it's a symptom no-one ever expects, but ends up being one of the worst. It's also exhausting trying to not let the remarks and attitude get to you and to constantly remind yourself it's the disease, not the person.

It can be so isolating and I hope you know you're not alone in this - most of us are all feeling the same, especially at this time of year.

Rebecca x

Smallp02
Posted by

Hi Chris and all.

As a 47 yes old lady with a gbm stage4 I would absolutely state that despite knowing my personality and .pod swings arc do affect those closest it is so difficult to be able to stop.

I would agree that perhaps the carer sect9j is the most suitable chat room for you and also perhaps you do some  ore research into the affects if q brain tumour.. the live it well website has a fantastic section on mood swings , how chemonaffecta it too etc.

I'm sorry if I am coming across as abrupt but when I come into this chat room all I seem to read is about how the carers are being affwct4f.. what aboutvthiae of us trying to deal with this who live alone....and just wantvgu try and live as normal.a life as we can with this ticking time bomb in our heads.. 

Sorry x

Paula x

LWF
Posted by

Hello & happy new year!we are SO SORRY for your horrid affliction, of course we are,we feel helpless too coz we can’t help you out of your nightmare,but we try,every day to cope  with its affects.macmillan is for you,also those who care for you.you may feel alone You are not!everyone on this site is going through some part of your journey,coz they care.i hope you can find someone you can talk to.if not we are here listening & will always respond.we understand the fear,,bewilderment  & anger,we are going through it too.

 

Novembergirl
Posted by

I wrote to admin a while back requesting a special chat room for carers of people with brain tumours, nothing has come of it yet, but if more people make the request maybe it will? The carers section is helpful but brain tumours do have some very specific things associated with them. There are so many of us carers floundering about re. how to help our loved ones that there's obviously a huge need for support and info. The GBM chatroom was a massive help to me when my husband was ill, but I hope the admins listen and create a special group for us, so that people with brain tumours can come on here and focus on the mutual support without having to filter out the other stuff. Meanwhile sending hugs to everyone who is dealing with this from both sides of the coin.

LWF
Posted by

     CARER   :    Macmillan is a fabulous help,but being a charity has limited resources.Surely it's better for those involved,victims,carers to know how we're all feeling,coping or not.Otherwise it 's  a them & us situation,some may feel betrayed that their loved ones talk behind their back & it's usually carers that use the site trying to glean info on how most to help.Perhaps our msg could state at the  start  "CARER "  or "VICTIM"  so that folk can filter out what they don't want to read.So let me start.   And a Happy New Year to everyone!  

Smallp02
Posted by

From experience on both sides (As I have previously been a carer so completely understand) and having a Gbm myself, I do totally agree that we need to support each other and I'm sorry if my previous post caused any offence it was in NO way meant to.. I just meant that I don't always want to be reading how difficult it is for the carer all the time.. and You are right that there are many more carers who use the site than actual "victims ".

I am also  a HUGE supporter of groups such as the online support groups in my working life too.. I'm a Social Worker and absolutely promote talking to others in a similar situation as often as I can..

I do like your suggestion of the headline as that way we can choose to read it not..as we mustn't try t9 get into a them and us situation as we are all in this together anyway....

What do others think?

Best wishes x

Paula x

LWF
Posted by

 CARER  :    No offence taken atall ! Boy have you had a hard time! And a social worker too?Like they say 'no good deed goes unpunished' .Me & Li would love  to chat to you if you like,I have M.E so am always here. I hope you have family,friends or some support,we bloody haven't! Ha,ha.Let us know how your're doing.I write this but Li reads and contributes,but if you'd rather deal with just Li I shall butt out.

Best wishes  Val  xxx

Smallp02
Posted by

Hi Val.

I live alone as my family are 300 miles away but they visit regularly bless them.. and I have the most AMAZING friends and aunties locally who help out she they can..  but juatbtrying to remain as independent as I can and live as normal a life as I can too..  it's tough as you know but we can only do what we can !! You take care and keep in to7xh xx

Paula x

LWF
Posted by

Thanks for that.May I ask where you & family are from,we're in Kent but I were born oop,North,1/2 Irish so a bit outspoken & forthright!So glad you have "people" & a great attitude.Keep on trucking!

love Val xxx

Smallp02
Posted by

I live in Kent too..  am from TEeside originally (Cleveland as it used to be). Which is where my mam and step dad still are... hence my strong attitude too he he...

Xx

Paula x

prettyfedup
Posted by

Don't hold your breath I "asked a nurse" 1 question and the answer I got was I don't know!! lol you couldn't make it up

Smallp02
Posted by

Sorry I don't understand.... 

You asked about what? Xx

Paula x

LWF
Posted by

Ooh,I had a Cleveland Bay horse years ago,she was a right stroppy cow,but I loved her to bits,ha ha.Hope you're having a good day.Sunshine here in New Romney,so just putting on the bikini!