We Talk Brain Tumours

Denise, I wish I could help you through this, I fully understand what you are going through.

I hated the gradual and in the end total personality changes.

The total lack of empathy and lack of understanding of even the important things.

One of the worst days of my life was when my mum died. She had been ill, in hospital with a chest infection... and took a turn for the worst.

When I told my husband she had died, he looked at me and said "Whats your point?" That wasn't the worst bit... I had several bunches of flowers sent to me, and as each bunch arrived, I had to explain again and again that she had died. After a couple of days, he became suspicious that I was receiving flowers and I had to give them all away.

The 'story telling' is called Confabulation ... and my husband had a GOLD star in it.

I wish you and you family luck on this journey. You are not alone.

Take care

Pam - I'm sorry if this is in appropriate but your conversation with your neighbour made me laugh! I think we have a similar sense of humour!

Humour gets us through most things in life so cling on to it. At my dad's funeral my mum, sister and I had a fit of giggles because dad was going commando in his coffin!! He wanted to leave us in his Tui (NZ brewery) t-shirt and his favourite chinos so we gaily sent those along to the funeral home without any of the basics! It still makes me smile now and I know it would have made dad smile too.

I'm sorry to read of Charlie's struggles. It is very early days and as you say ,you are watching him. I'm a firm believer in whatever gets you through the night in those first bewildering days. My mum and sister had to go to the Hospice the day after dad died and after seeing dad the Hospice staff shared a gin and tonic with them to send him on his way. They then came to see me where we all had a very large glass of martini each . An hour later they had to register his death and they were well on their way to being completely trollied by that point! We freely admit that too much alcohol was consumed in those first few days but it didn't last forever.

Like Pete says, ask Tony's mac nurses if there is any support available to the children. We think we know it all at 22 but in reality we are still children then. Charlie will come back to you and, until then, you are doing all the right things.

Keep going Pam - my mum has had one meltdown since dad died and it took bereavement counselling for her to realise that that is what is normal for her. It doesn't mean she loved dad any less than someone who cries constantly. We're all different.

With love,

Naomi xx

Denise,

Firstly, I hope your daughter is recovering well from her surgery. Poor girl reacting to the aneasthetic like that.

Secondly, just as Pam says - this horrible period will pass. If you have a spare few weeks (haha) read back through all of our comments on here and we have all struggled with this phase. For some brain tumour patients it is worse than others depending where the brain tumour is sited. My dad's was in his left temporal lobe which controls mood and emotion. We had about six weeks where he was absolutely vile and I used to pray the end would come quickly for my mum's sake. He was extremely depressed - understandably, moody, suspicious, aggressive, frustrated, swore like a trouper in front of my children, angry and had extreme OCD. It was horrendous. Of the all the things this illness robbed my dad off (apart from his life) it was when he lost his sense of humour that I knew he was gone forever. He was the funniest man I have ever met, famous for his jokes and quick retorts.

When he moved in to the Hospice the staff helped us understand that his behaviour was entirely out of his control. We do not know how it feels to be given a terminal diagnosis. We couldn't empathise with him. When he finally accepted his fate and didn't try and fight it anymore we got dad back and it was lovely, even if it was only for a couple of weeks. He smiled and laughed and even when he could no longer communicate at all, there was a sense of peace and contentment about him. He was involved in decisions about his care and he was satisfied he was doing things his way at last.

We just put our heads down during those miserable few weeks, tried to get through it and constantly reminded each other that it wasn't dad behaving that way. Dad once threw a glass water jug at me but was immediately remorseful. He felt like a child and decisions were being made for him - it was eating away at his independence bit by bit.

It is so hard and I'm sorry if I sound patronising. Keep coming on here and ranting, the rest of us did. Nobody judges you here.

Keep going.

With love,

Naomi xx

Pam my love, thank you ssooo much. How you can find time to make me and so many others on here feel so much better is truly a gift. Hope Charlie manages to find some inner peace ( not easy I know).

You are truly amazing . ((((((HUGS)))))). What Pete says is worth a try if Charlie will speak to someone. I have been seeing a lovely lady for a couple of months and she has been a God Send. Our youngest daughter also went to speak to someone last week. She wanted me to sit in with them which was a shock but it was absolutely brilliant . Our beautiful girl (dare I say it) appears much calmer Yipee!!!!

Lyndalynda Thank you  I feel so much bettter just being able to share this with people who understand. I know it will get worse and knowing your all here is just the tonic for me right now.

Naomi. Thanks love I know you are right. I followed your posts about your lovely dad and  at times used to think Chris was sssoo like him. Damien is also left temp. lobe so that's probably why. Most of the time I cope well I think it's just so much worse when he is horrid to the kids. Our son's friend lost his dad suddenly in a road accident a few weeks ago. we were talking about it and he told me he wished his dad would die like that ........suddenly!!!!!!! But without suffering.  It broke my heart... But I think I know what he means.

Thank you .All of you are like one great big comfort blanket

Love and peace to all

Denisexxxxxxxxx

Denise,

If my husband ever had a Hospital Appointment I would discretely give the Nurses a note before we went in to see the Doctor. I felt I had to warn them in advance that A LOT of what he says is more than likely to be false / made up..... and to check with me first.

I hated this stage, as it would come and go... and there were no 'warnings' to predict them.

I had the occasional violent stage/ moments too ....

I found a lot of the time I could distract him with food! If I gave him something fiddily to open (like a penguin biscuit) ... it diffused the moment, and gave me a chance to remove myself from the situation.

Love to you and your family

Lyn

Dear Pam,

I have just revisited the site after a little absence.  I am so, so sorry to learn of Tony's passing. May I send my belated, but sincere condolences to you and your family. I again apologise for not responding sooner. Take very good care of yourselves. Lots of love. Martyn XXXX

Lots and Lots of love and good wishes to all my passengers. I'm sorry we've been stuck in the sidings for  a while, but the driver is just completing a new directional course and hopes to qualify shortly, to be back behind the wheel.  Love Martyn XXXX

So so good to hear from you Martyn. Dont worry about us being in the "sidings" it has given us time to have a wee snooze and reflect on the benefits of Chablis versus Pinot Grigio.

Cxx 

Afternoon Groupies,

Just thought I would say I am popping on and reading messages but I have decided to step off the train for a bit, just a time out.  I need to spend more time with the family, visiting friends and living it up while I still can.  I will come back from time to time but I just find the sadness and desperation on here so hard to bare sometimes.

As usual, my love & strength to all who want or need it xxx

Debs -

We all fully understand where you're coming from Debs and you're right. You are in a different position to the rest of us and some of this must make very hard reading.

You go and live your life and keep everyone entertained with your hilarios tales and sense of humour.

You will be missed but not forgotten.

Hope life continues to treat you well, take care of you and your family.

With lots of love,

Naomi xxx

Debs - I meant 'hilarious'. I hate making spelling mistakes. I'm so anal about the English language!

Martyn - lovely to hear from you xx