We Talk Brain Tumours

Elaine,

Glad you found your way here and you are in the right place, just sorry you find yourself in a position of needing us.  I hope some of the others can help with advise regarding RT (radiotherapy) and any other options to ask for.

Liz, I most definitely do regret asking......in fact my oncologist asked me if I wanted to know and I stupidly said yes!  It's the first time in my life I can honestly say it felt as if my blood ran cold.  My whole body felt cold, whether from fear or shock or both I couldn't tell you.  Then of course my eyes started leaking and wouldn't stop.  I keep telling myself that I have not done anything by the book so far (see my profile for full story) but basically 4 hours after 4.5hrs of surgery, I was sat in a chair eating my dinner.  I went home the the next morning less than 24 hours after my surgery finished.  Breezed through RT and had some major constipation issues with TMZ but that was all.  Yes I have an almost non-existent short-term memory, slight balance & concentration issues and although I am a touch typist, I find myself missing out words or typing words that are similar to what I wanted.....really hard proof reading yourself when you have word recall problems   I am lucky, I know I am, I have lost friends on here that were younger than me, diagnosed after me and with similar tumours. 

Sometimes ignorance is bliss, I have been told by many a registrar not to worry about the prognosis and just "live my life", which I try very hard to do, but its always there, tick tocking away in the back of my mind.  That said, we are all different, some people don't want to know and others do and probably handle it much better than me.  Individual choice Liz, good luck with Nick's results, I certainly hope its shrunk, if not gone away (wouldn't that be nice).

Love & strength to those who want or need it.

Thanks for sharing that Debs, good to get the view from the person with the tumour rather than a carer.  Very difficult with Nick as he is so laid back and never talked about his feelings prior to being diagnosed so I have no chance now.  He just says he's fine, not bothered either way and if I want to know just ask but not to let him know if it is not good.  That's the part that I know I could not hide and would certainly have to tell his parents and not sure what they feel about this as it is not something that we have discussed.

Naomi - what you have described is how I see myself being.  I think I would be super paranoid at the slightest thing and probably back off doing anything 'just in case'  which in turn could waste valuable time together. 

The last week has been such an achievement,  Nick  has sat up in bed unsupported for the first time in months.  He has walked today with a frame (not very far but wow what an achievement) and we are both feeling very positive, I just think that if the news is not good it might put him back into the very dark place that he has been for the last few months and has just come out.  I feel like I have just got him back (mentally anyway) and don't want to loose him again.

Thanks everyone for your comments,  really supportive as usual  x

Hi all and welcome Tasha and Elaine,

Sorry I haven't posted for a while but things have been pretty dismal and I have found it really hard to get motivated. G is still in hosp and is just getting over his latest bout of pnuemonia, I really don't know where he gets his strength from, this brings me to the topic of prognosis.  Five years ago we were told a year to 18months (didn't ask, just told!) G wasn't in a position at the time to take this in and I'm so glad because he remained positive and had 4 decent years, also, I was advised to prepare our daughter who was then 8 some instinct told me to wait and again I'm so glad I did because she continued to have a fantastic relationship with her daddy.  When G went into hospital we were told max 4 weeks, 13 weeks later he is still fighting but without any quality of life.  I really don't think anyone really knows, it is so individual and largely depends upon when the tumour is discovered. Basically, just make the most of every good day,x

Elaine, when G had his treatment it was very much dependant upon age and fitness/health (apart from tumour) one authority would only offer RT but another felt he was fit enough for chemo aswell.  They did psychosomething? tests and then weighed it all up. G was a lot younger than your mum and he coped well with the treatment but the RT did wipe him out.

Take care everyone xx

Hi everyone,

Just want to thank you for all the replies and the encouragement.

 We have to see the oncologist this morning and I was all for pushing them to do something but I think after reading what some of you have said im leaning more towards accepting (very reluctantly) that it might be best to leave the RT, its such a hard decision to make and I feel heartbroken but i know weve just got to try to make whatever time my mum has left as happy as possible. I realised that her quality of life isnt great, she was always so active for her age and to see her sitting in the chair getting so frustrated because she cant even make herself understood is so sad. I think I thought RT was going to be a miracle cure and make her back to her old self but I realise this isnt going to happen. Im not looking forward to this meeting.

Liz - I hope you get some good news today, you deserve it!

To everyone else, you are all so brave, I know you have all been through or are going through what Im going through and to be able to find time to come here and encourage others is so commendable. You are all in my thoughts,

Elaine x

Hi everyone. 

So sorry for all the bad news since i last came on which was on page 200 and something. So alots gone on since. Sending huge hugs and love too all. 

My mother in law was diagnosed with incurable Glioblastoma Brain tumour grade 4 back in September 2010. She had chemo and radiotherpy and a operation which got nearly every bit out. Had scans through out since my last post she got too meet her new grand daughter and got to come too our wedding we had the best news ever in June that the tumour had actually shrunk. We were all on a high for when our wedding came we werent as worried about her scan but we got the worse news a week after our wedding its been growing again n quite fast. The only thing they can now do is wait and see if they can hold it off with chemo again. :-( This world is so so cruel :-( 

What can we expect in the future? 

I dont know what too do any more i feel i have too be strong one for my husband and its really hard specially as we have 2 young children who we both need too stay strong for. We both cant bare the thought she might not be here for christmas infact cant bare the thought of it at all. :-( 

Mouseylove - I'm so sorry. I am in exactly the same position although my dad isn't having any further treatment. He has got weeks left and it's the hardest thing I have ever gone through in my life.

Keep going.xx

Mouseylove - I'm so sorry. I am in exactly the same position although my dad isn't having any further treatment. He has got weeks left and it's the hardest thing I have ever gone through in my life.

Keep going.xx

Doom and gloom from me today I'm afraid. Apologies in advance!

Dad fell over in the bathroom today (he isn't supposed to go upstairs but has become so infuriatingly stubborn and won't accept any help). Mum's bathroom is only small and he managed to wedge himself behind a closed door so mum couldn't get in. She called his hospice nurse and he sent a team over to help. Dad has gone to the day hospice today as mum was in a terrible state and broke down. His seizures are not being controlled by the maximum dose of epilepsy meds and he has multiple fits each day.

The OT, DN and Mac nurse are curently making arrangements for him to have a week in the hospice while they tweak his meds to try and ease his symptoms. Mum has been warned he may not come out if he doesn't improve. Mum had quadruple heary bypass surgery two years ago and isn't supposed to lift anything heavy so when he's on the floor she shouldn't really lift him.

I feel incredibly sad he will be going in but I knew this day was coming and in a strange way at least I can just worry about dad and stop worring about him falling and mum having to pick him up.

What a mess.

Love to all.xx

Ah Naomi,  really sorry that you have had another bad day. It must be so hard to see your dad like this. On a positive note with him moving to the hospice, it will mean that all the time your mum now spends with him will be quality time and not caring for him as I know all too well that most of my day is spent looking after Nick rather than sitting having a chat and a giggle.

Make sure that you spend this time with your mum and dad together, it will also be nice for you to see your mum not running around and doing things that she perhaps shouldn't be given her own status.  I really do hope that they can get his meds under control so you can all have some happy time together.

We have spend most of the day at Christie's so Nick is now flat out. Oncologist happy with his progress but nothing happened much to be honest, felt a little deflated.  I knew that they weren't going to scan him yet so I don;'t really know what I thought we were going to hear.  Anyway, scan will be 2-3 weeks and we get the results on 28th sept so everything crossed it will be good news.  God know we could do with some!

Hope everyone is having a goo day, sending thoughts and hugs :))

sorry, that should read good day (although I am sure that some of you have goo days too,  I know that I do!!  lol)

Note to self - spell check before posting in future!