We Talk Brain Tumours

Thank you so much to all who replied. It really does help to know I'm not alone in struggling with this.

Dad had a blood test first thing this morning, results back tomorrow. We will know then how often he is to take his epilepsy medication. Apparently, Phentonyn (sp?) is not easily tolerated in large doses so it's a play it by ear situation.

We asked the doctor at the hospice why they wouldn't give dad another MRI, seeing as he is now 4 1/2 months post-diagnosis and two months since he completed his 6 week chemo/RT combination. We felt it would spur him on to maybe try some more chemo if it has shrunk but of course, the flip side of that is that it may have grown. The doctor also said that giving an MRI is more radiation, not something they are keen to do.

I'm not ready for this. I thought I'd prepared myself, read all there was to read, did my research etc. When it comes down to it, I'm losing my dad and nothing in the world can prepare you for that. Dad asked the doctor how long it would be before he needed help with dressing/feeding/toileting etc and she said maybe a few weeks. We are no longer talking months but weeks. That's just so unfair. It's not unfair to him, he's had enough and wants to go now. I don't blame him, he no longer has quality of life.

Hugs to all of you on here struggling with brain tumours and once again, many thanks.xxx

Edited to make it clearer.

I have read that brain hospice link and it is quite distressing towards the end.

Update on my mother:

She's talking slightly better, now walking with a cane but she still has memory issues and difficulty with other things. The doctor won't give her anymore chemo yet. I think she'll never have any more but I could be wrong.

To my knowledge, my mother hasn't asked any questions relating to the illness or what happens next. She's taking it day by day and is expecting to come back home. I'm not sure that's a wise idea yet as we have quite steep steps.

Back when she was diagnosed, the doctors never said it was terminal or mentioned anything about it's mortality rate. They simply told us that it's something which will never go away.  My dad decided not to tell her any of this to my mother about the G4 Glioblastoma as to not worry her or make her give up if she knew it was just to prolong the inevitable.

It's kind of awkward as now the idea of a hospice has been brought up at home. How do we break this to my mother? The doctor is looking into the issue of care at home.

My mother is intelligent and may know the truth by now. We don't think it's wise to bring it up and it's too distressing to talk about.

On a final note,

My strength and support to the last few members who have posted. I really sympathise with you. I'm dreading the point when I will experience it.

Dear Deli..this stage of the disease is awful...I can only describe it as going into free-fall...without having the safety of a parachute!!!!!!!! If you dad is fitting they can give him madazalam..this can be given as a dose that is absorbed through the gums..and it works quite fast. they may decide to give this as an IV dose a little later on. phenabarbitol is also used to stop fitting, but that will knock him out totally and gets used to sedate also. Sorry if this is too much information..... Take care. Thinking of you all on this thread.

Be kind to yourselves. Love PEABS XXX

Deli, I would just like to advise that MRI scans do not 'give off' any radiation - the Doctor you spoke to has given you incorrect information.  The hospital where my husband is treated scan every 2 to 3 months.  I would re-request that an MRI scan is carried out for your Dad.

Echo what Debs is saying MRI...Magnetic Resonance Imaging....NO RADIATION whatsoever!!!  Demand an MRI        PEABS...XX

So sorry to hear of everyone's difficult times at the moment. I just wanted to add that the MRI and radiation thing is definitely a load of rubbish. My dad is being scanned very regularly because he's taking part in a drugs trial for Avastin. They've said he can't have any more radiotherapy in the next five years after his six-week blasting, so there's no way they'd be scanning him so often if it was giving out radiation. Sending you strength and love.

Debbie xxx

Jeez what a flurry of activity this evening and my heart goes out to all of you.  Paul seems stable at present although in November we were told the tumour had progessed and in december that he had just weeks left, he has picked up and we are feeling we can plan a few weeks ahead again.

Deli, Paul has seizures occassionally and we were given buccal medazalam to use if necessary at home, I was given a protocol and instructions how to administer it.  I keep it in the cupboard but havent used it to date, you give it by injecting (no needle) the solution between the gum and cheek, ask about it, its an expensive drug so maybe that's why it hasn't been offered to you or it may not be used by your health authority. 

I read the timeline info a long time ago and go back sometimes but to be honest somedays we seem to have days or weeks left acccording to the timeline so now decided to continue taking each day as it comes, its so scary I hate it and get frustrated and weepy too often

Anyway, thinking of each of you as we continue our grim journeys.

Joanna

Hi, 

this feels weird, I am writing from what feels a bit like the other side from where I have been standing for so long; mum passed away in the early hours of Tuesday morning.

At the moment it feels to raw to talk about, and in some ways I feel here might not be the right place to discuss mum's passing or her last few days, but I am sure I will find a thread on here soon that I can join. I will be in and out and reading WTBT and GWWW still as I have found so much strength and kindness in these pages and want to see how everyone is doing. 

I haven't written for a while - been so busy either trying to keep myself busy so I don't have time to stop and think or spending time with mum and watching her decline and deterioration. Am feeling a huge sense of emptiness and sadness but also some relief for mum, she was so sad for the last few months and scared and I am glad she is no longer afraid or suffering in anyway, I just miss her so much. Mostly I feel numb, then waves of sadness hit me. Lots to do to keep us busy. But what will happen to my dad once we're all back at work etc? I can't imagine. 

Love to everyone on here. I certainly hope I can at some time in future help people on here with some of the knowledge I have gained throughout my mums battle with that hateful illness. 

xox 

My thoughts and prayers are with you and your family at this sad time.

IDOF,

I'm so so sorry to read of your mum's passing - my heart goes out to you and your family. Hopefully in time you will gain comfort from all the wonderful memories you shared with her. I'm sure she was immensely proud of the beautiful kind family she has brought into the world.

Her memory will live on in you, and your future children, and I'm sure she will always be somewhere close to you, seeing it all happen. Come back and talk about her more when you feel up to it.

Love Debbie xx