We Talk Brain Tumours

Hi Bodrul I have an AO3, although I believe we are already friends on here (have to check these things as my memory is as bad as Dorey from Finding Nemo!)  had a total resection (got everything they could see on the MRI, my tumour was roughly 2 x 3 mm) from my right frontal lobe in Jan 2009.  I call my BT, Buttercup, helps me tell her off and warn her about not coming back!

Sorry for the late reply, I have been busy with my husbands karate club as we had a grading today and someone has to print the certificates, take the photos, update the website etc............(that would be me).

Now thats the kind of message you need Bodrul!

Cathi

Hello everyone,

I have been here for a while quietly and have finally plucked up the courage to say hello! You all seem such a nice, supportive, corageous group of people. I just wanted to introduce myself. My dad was diagnosed with GBM grade 4 on biopsy end october 2010 and given up to a year. He had 6 w radiotherapy december 2010-jan 2011, which he finished 5 w ago and since then he seems to be getting weaker and sleeps 24/7. It seems to me  blessing that he has no pain and that this awful tumour doesn't spread. He only really gets  up now to go to the loo. Mum is doing a fine job caring for him , my brother and I are doing our best to be there with them as much as possible and support mum . But its hard with looking after your own family, working and travelling. We are going back to the oncologist this week, with another scan hopefully not to soon after to see what effect the radiotherapy has had. Anyway enough from me, pleased to meet you all . Any tips on using the site would be really appreciated, as I seem to have trouble finding my way around.

Mandy x

Mandy

Hi Mandy   Sorry that you have joined us but glad in so many other ways. If you read my profile you will find that my husband in same situation as your Dad only a month or so later. Inoperable. We had to skip the 6 week R.T because of the speed of growth and had 6 intensive days instead finishing 21 Jan. We are experiencing similar symptoms...sleeping a lot now and left side paralysed since Biopsy. I had hoped the sleeping was a result of the after effects of the RT, and still live in hope that we may have some months of respite.

You will find many great people on this site. Lots with the medical knowledge you need , some with practical advice and some who will just lift your spirits when you feel low. Its been a great help to me.

Cathi

Mandy

Welcome to this site, it's been a great help to me. There's also a forum called "why why why glioblastoma" which is very helpful.

My 65yo dad was also diagnosed with GBM4 in October following a huge seizure and biopsy and was given 7-12 months as his tumour is inoperable. He had 6 weeks combined rt/chemo in Nov/Dec 2010 and completed two courses of 5 days on/23 days off chemo. However, he decided to discontinue the chemotherapy as it made him so poorly.

Dad is five months in to this journey now and continues to go downhill steadily. He sleeps almost constantly and struggles to even stay awake long enough to eat. He's trembling constantly (spills drinks, drops things) and now is struggling to even get out of his chair and walk. He has an MRI coming up as his Oncologist wants to check tumour progression (we had to fight to get this scan, originally they wouldn't re-scan him as he's terminal).

I have no idea what the future holds but I'm terrified of it. I hate seeing dad like this and in my darkest moments have wished for his suffering to end. My sister lives overseas and I have six children (the youngest being six months old) so his care is left entirely to my mum. I'm almost more worried about her than I am my dad at the moment as the strain is taking its toll on her.

I guess all we can do is keep going. Take care.

Naomi.x

Do you ever think about what life was like before and how you took it for granted? Sometimes I wonder how we still manage to do normal things....

Had hospice nurse visit today.Left me drained emotionally ...prob because I try not to let myself get tearful normally....but tiredness and sympathy are a horrible mix. Said that the increase in sleeping is probably a slight downward dip rather than the after effects of the RT( what I suspected deep down) Also asked if we had discussed an end plan...where. We had not. I assumed here but I forgot his protectiveness to our two children. That is probably what will drive the decision. God I never thought I would be discussing this so soon. These are the things other people discuss...not us

Gosh, I'm so sorry. We had our first hospice nurse visit just before Christmas while dad was relatively still well. Seems like forever ago now.

Dad has said he wants to die in the hospice to make it easier on mum afterwards. He has visited the hospice and feels at peace with his decision (prior to this he had wanted to die at home). He gave me a signed copy of his DNR after he'd been which was a curveball I wasn't expecting. I cannot imagine how your children feel - I'm 37 and feel unprepared for losing my dad.

We asked the oncologist last week about dad's increasing drowsiness. We asked if it was due to tumour growth (doubling his steroid dose did nothing so swelling was ruled out) but he seemed to think it was due to brain damage from the RT! Yes, I realise at the time of diagnosis mum and dad were told about the possibility of RT causing brain damage but in the face of a terminal diagnosis, didn't pay much attention to it. Still, the scan will tell us once and for all.

I feel like I'm in a dream. It's the only way I can deal with it, I'm not ready to confront the realities of it all.

And to answer your question, yes I do think about life PD (pre-diagnosis!). Dad collapsed when my youngest child was six weeks old. For the first six weeks of my son's life I could not believe it was possible to feel so happy (finally I had given my eldest son a brother after four sisters) and had a horrible feeling something was going to come along and knock me off my perch. Oh, the irony.

And you mention doing normal things - today I had my son's GCSE exam timetable come through the post and I was writing his exams in the diary. It suddenly hit me - will dad still be here then? Will dad dying affect my son's grades? Is my son going to actually knuckle down and do some revision? Such normal stuff. Six months ago I never imagined I'd be doing normal things ever again.

Keep going.

Naomi.x

Hello Deli

My beautiful 17 year old daughter is taking her A levels in June and my husband is just about to be discharged home on a full care package including overnight sits for his terminal GBM 4. Like you I wonder how she will cope with exams and Uni in October.

Little things get to me..I went to dentist today, nrxt appointment in 9 months and you suddenly wonder what will be happening in 9 months. I know I will be a widow then.

Opal x

Oh, I feel so moved by your stories and then realise that we are going down a simialr path too! Yet, it still seems so surreal, but we have to carry on down that path, we have no choice.  I just find strength from all your words and stories, so want to say thankyou.

Mandy x