We Talk Brain Tumours

Idreamoffiji.... Thank you so much for your post.... I too want the truth no matter how much it hurts... so was very grateful for what you posted. Unfortunately my Mum passed away at 9am yesterday morning.

We all knew just by looking at her on Monday night.... it's something you just feel but then feel guilty for feeling it. Seeing her was not as difficult as I thought it would be and to be honest I think we are all glad that she is no longer suffering.

We have decided on cremation, which luckily, was her wish... and once and for all we will destroy that nasty, horrible tumour just like it has destroyed us. I think the hardest part was telling the children, eldest of the family being 5. None of us are religious in anyway but I told my 4yo the angels had come to take Grandma to heaven to make her better there because the Drs couldn't here. But because she has gone there she won't be able to come back. She can see us but we won't be able to see her.  He seemed fine at first and then about 10mins later I could hear him crying and went to him to check he was ok and the words cut through me. He said "That means you don't have a Mummy anymore"... Out of the mouths of babes such truth and such innocence.

I'm sorry I've let my emotions run away from me... Thank you to all who have answered my questions and given support. I wish you all the best on your journeys xx

Hello everyone. Wow, thanks so much for your kind words. I have to say writing yesterday was cathartic for me and I think that tonne of bricks that I have been waiting to hit me have started tumbling. I have to return to work tomorrow so not the best timing. Or maybe it is, keep busy. So I have been in tears quite a bit since, which makes me feel more like a human and less of a robot.

Worriednow, I am so, so sorry. It's such a time of mixed emotions isn't it. What you said about your daughter made me well up, they can be so considerate and compassionate can't they? I had a feeling your mum didn't have long and that was what compelled me to write. Take care. xox 

My brother has a 4yo (just, in february) who has had lots of questions. Since Nov my mum has refused to see the children as she was embarrassed by her speech and appearance and didn't want them to 'remember me that way' it was a hard decision to agree with as it made her so sad not seeing them, she'd cry at photos of them. But we respected it.

Before xmas 4yo got told nana was going to die (my brother was visiting lots so she knew mum was il) and she said similar - that what was going to happen to granddad? would he be on his own? and could he come and live with them? So sweet.

My brother and his wife said similar to you after mum died; that nana was in a happy place and had turned into an angel. 4yo came to both the service and the committal and she threw rosemary for remembrance into the earth and  asked how nana would hear  her say goodbye and we just told her that nana could always hear you if you talked to her.

Her mum was worried about her seeing people upset and it was debated a lot whether they'd just come to the wake, or wake and the service and not the committal.  but I think without seeing it she would have had even more questions. I think it totally depends on the child in question.

It has been hard at times when 2yos have commented 'nanas dead' with a little sad look on their faces (not that they understand it really, just that she's gone) but I think it shouldn't be something we and they can't talk about.

I'm so gutted mum will never meet my children but she has left me some baby clothes (one which my nana made for her) and a quilt she made for me when I was little. They are the most priceless gifts. 

I am really glad to be back on here, the support of you guys is amazing. I am glad none of m friends understand how hideous this illness is for their sake, but for mine it's hard having noone who quite gets it. 

Love and best wishes to all reading and writing. Big cyber hug too. x 

sorry my posts are so long!!! At uni I was always trying to hit that word count, it seems I've got too good at over explaining!!!

xx

I am heartbroken to read all of the recent posts and know that there are no words to comfort your loss. I wish that we could help but although we are all in similar positions it is a lonely road we travel. I cannot believe the horror of this. When Mark was diagnosed in December the doctor said this is a very rare disease, the neurologist said that he only saw 30 cases. What are they talking about? If the number of sad people on this website is even a small indication of those who suffer from this awful beast, then we are in a tsunami. I thought that I was one of the few who had been devastated to find her partner had been diagnosed. I hate this illness. Sorry..you can tell it was another bad night.

cathi

Dear worriednow - i am so sorry to hear you awful news.  IDOF, I like your long posts!

catg, your right for a rare disease there are far too many of us that have been affected.  I have taken the decision today to cancel pauls birthday party on saturday, although he feels well i am uncomfortable, with no specific reasons except his WCC and neuts are at rock bottom, so using this to ask people not to come, I don't want to risk infection 2 weeks before next chemo is due

jms

Hi everyone,

I'm new to this thread and site, trying to find my way around too . Looking forward to meeting some nice people.

All the best,Love

Bodrul

i'm so sorry to hear that, May her soul Rest In Peace.

Bodrul

I have Anaplastic Oligodendroglioma Grade 3, was wondering if there was anyone on the forum with the same tumour?

Bodrul, 26 from London

Hi Bodrul,

Sorry you have had to seek us out, but you will find help, advice and support here. This dreadful illness has absolutely no boundaries, you are still so young. It will help to read a few people's profiles, that will give you some idea of what we are dealing with, and how.  I note you have been diagnosed with a grade 3 tumour and been given a guide of 3 to 5 years!  My friend, everyone is different. A prognosis is an educated guess and not an exact science.  For instance, my wife has a grade 3 astrocytoma and was prognosed approximately 2 years. That was in January 2003. She is not particularly well now, but she is still giving me my orders!

Take care mate, I'm sure someone else will be along shortly and we will chat again later. Martyn.

Hi Bodrul

Sorry you have had to join us, but as Martyn said , you will find much comfort and support on this site. It has proved invaluable to me and I am sure it will for you too. There are many wonderful people on here all with different stories but we all share a common bond. Keep posting.

Cathi