My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
Page 3 - that will never do for this thread! I've come on today to have a rant about my mums brother. It's been annoying me since Saturday and I'm just getting crosser and crosser. My mum and her brother don't see each other very much at all, mainly due to the fact taht his wife hated my mum. But his wife died 5 years ago so they are back in communication. They last saw each other at my daughters christening 4 years ago and now exachange christmas cards etc. Back in January when my mum was first diagnosed her husband told her brother straigjht away and he was going to come and see her after the bebaulk but didn't because the other person that he was visiting on the same trip cancelled. (He lives about 80 - 90 minutes drive away). Then he was due to visit in May on his way to Scotland, but then decided he just wanted to get home, rather than detouring about 15 minutes off the motorway). I was down in Devon last week so phoned and aksed if I could pop in in on the way home - which I did. I was there for nearly 2 hours before he asked how my mum was - it's his own bloody sister - GRRRRR! I asked when he'd last spoken to her / her husband so I didn't repeat myself and it turns out he hasn't spoken since May when he cancelled his visit on the way back from Scotland. That was more than 3 months ago. I can't believe that he really doesn't care. It's really upset me TBH. And teh other thing that really annoyed me, was that he then went on to talk about 3 other people that he knows of who had brain tumours all over 10 years ago and they're still all fine - I bet they weren't bloody GBM grade 4s though. I have had this quite a few times now - people telling me that people often live for years with a brain tumour. I know they're only trying to be helpful and positive. Sorry for moaning.
I 'handed' Roger over to the care of the 'professionals' tonight at Addenbrookes. He has second debulk tomorrow (or, at least, aspiration of the cyst in the tumour bed).
I was 'lifted' from my extreme worry yesterday when I took Roger for MRI scan that had been booked prior to decision to do surgery. Firstly, there is a new scanner at Addenbrookes that is a world leader - giving finite detail on even the most complex, intrinsic parts of the brain and, then, to my utter astonishment, I caught sight of the most gorgeous lady, in her forties, who came out of her scan, greeted her daughter (of around 16 years of age) and then turned to me to tell me my husband would be 'quite a while' as there was a new scanner and they wanted to run some extra 'shots' with it. I asked what her scan was for and it was for the same tumour, glioblastoma. She was diagnosed TEN years ago, has had a couple of debulks and has been symptom free for a VERY LONG TIME!! I told her I felt as if I had met a 'Mega Star'. To actually be face to face with someone who has survived TEN years was the biggest lift I've had since Roger came through that first operation.
Here we are again: Roger having his second debulk tomorrow. It was hard to let go of him this afternoon........to release him into the care of others.........when 24 x 7 I have lived, eaten and slept my way through wanting to do the best I can to give Roger a good life in the time he has left.
I can't describe to you tonight what I am feeling. The risks are substantial, given Roger's history since this nightmare journey began...........but I am holding on to the belief that if anyone can get through this next 'hurdle', Roger can.
Just one message to everyone tonight: keep the FAITH.
Dear Dot- What a worrying time for you. I know what you mean by'handing over'.No one looks after your hubby like you. How uplifting to meet someone with such a long survival. Good luck to you both in the coming days and weeks. Stay strong x x
I have been reading back over old posts from before i joined this site - i found this link that Gayle had put on - thought it might be useful - some info about GBM4 http://www.braintumor.org/upload/contents/330/GBM_FINAL_0708.pdf
Gayle - in one of your posts (i think it was you, apologies if not) you mentioned about how you don't like to ask the Dr. questions infront of M - but that you spoke to a nurse on the phone instead? I wondered who the nurse is - my mum doens't know her prognosis (but then i guess we don't really do we, it's all guess work) so dad probably can't discuss things he might want to - i know he's read alot on the internet but i wonder how he could find someone to actally speak to (or email i suppose - may lessen the risk of mum overhearing)
I have just sent you a private message, please, please don't read it, I sent it before I came on to read the posts, before I read about Stephens' passing. I am sooo sooo sorry. I really thought that if I stayed away for a while everything would be okey when I came back on, foolish me eh? Hope everything went ok on Tuesday, I bet Stephen was smiling on you in your Red dress. Look after yourself and be proud of all that you did for him right to the end, loving him and being there to hold his hand. thinking of you xxxxx
Rob has been very up and down over the last few weeks, he woke up one Thursday afternoon and it was like someone had given him new batteries, here was the man I knew and loved, sense of humour was back, eyes were bright and alert and he wanted to do things like a little gardening, reading, visiting, you all know normal things. Well this lasted all of 2 weeks & 3 days then on Monday again after his nap he woke up and was back to confused.com, thought it was morning again and shaved and showered, completely forgot what we had done in the morning and has got progressively worse as the week has gone on, spent most of Sat & today in bed and eating very little, he's also got thrush in his mouth and throat but hey what the hell we'll soldier on, at least he's still got his humour, keeps telling me the bird in his throat keeps him awake with it's singing??
Love and good thoughts to everyone Gayle, Woody, Sallyee and also all the new names since I was last here (sad to see so many).
Hi Eileen, Nice to "see" you again. I LOVE the use of confused.com - I shall remember that one! I've just reread your profile and saw that Rob only managed one cycle of the 5/28 chemo - that's all my mum managed as well as it too made her too unwell. It's hard isn't it when they decide that there is no more treatment. She is "just" on dex 2mg (plus haliperidol, diazepam, and variious anti indigestion drugs, plus something because her adrenal glands have stopped work, plus aciclovir for her shingles, and a pain reflief which I think is codeine - so maybe I shouldn't say just dexamethasone!!) Hope Rob picks up again. I have read a couple of times lately that when things change it could be that they are harbouring an infection somewhere, so it might not necessarily be the BT. Take Care. Sally E xx
Just a quick one from me tonight, thats us home from the caravan Martine back to school tomorrow where has the last 7 weeks gone!! M & M are sad to be home they loved the caravan and will miss it dearly anyway we will go back on friday.
Dot great news about the lady who is 10 years down the road of this evil illness lets hope and pray we are here posting the same news 10 years down the road for our handsome husbands that would be a dream come true, hopefully Rodger is recuperating from his op well, take care. xxx
Julie, thoughts to you. xx
Eileen, this is such a bumpy rollercoaster we are so thankful for the good days love to you and Rob. xx
Anyway folks off to bed now, very tired and up nice and early tomorrow morning take care everyone.
How long do most of you wait for results of MRI scans? My mum is having one tomorrow but won't get the results til her next consultant appointment which is 4 weeks tomorrow. I have said to her that she should ask for an earlier appointmnet or at least phone up and ask before then. But she is in such awe of anyone in the medical profession that she wouldn't dream of "bothering him like that". It just seems that 4 weeks is such a long time to wait.
