hHello we are a bunch of people who have all been touched by Brain Tumours, we also have our own message boards if you want to look back on what some of us have already written.
I have set up this new Message Board because unfortunately this group seems to be growing & we all seem to get great comfort from talking to each other & sharing our stories, medical questions & even having a giggle. But as this group was growing I for one was losing who I had replied to, so if any of you would like to join us for a chat please do or if you want to carry on using individual message boards that’s fine too I’m sure we will find you there.
I look forward to our first chat…..on this board.
Kind Regards & love to my buddies who are already established on here (you know who you are).
Congratulations on setting up this new post. I for one think it will be easier to keep in touch via this messageboard rather than trying to keep remembering all the different people I'm posting!!
As you say, unfortunately we are a growing bunch and hopefully people affected by this awful condition can post here for information,advice and of course more importantly, support.
Many thanks Jane you're a lovely lady. Hope all's well with your fella.
My dad's just been diagnosed with a grade 4 GBM, I'm glad I found this forum as I see there are several people who have family members going through the same thing. I'm an only child and my parents are seperated and I live a long way from him, so it isn't easy at the moment. When he gets worse, I'm going to take unpaid leave from work to look after him, so that he can stay at home, as they aren't able to cure it. Luckily I've got a very supportive husband and employer. I'm sure I will be popping back in here with lots of questions.
I'm sorry to hear about your dad. My husband Den also has a grade 1V GBM .
Has your dad had an operation to ' debulk ' the tumour and is he having any other treatment?
I'm sure that it's very difficult for you at the moment, being so far from your dad. But we are all here to help and advise you and please feel free to post me at any time ( and I mean that!)
HI Jane , Shirley and Gill, very good idea this new board, well done Jane. Well i hope everybody is well,my dad has had a good couple of days, fingeres crossed it stays that way, i get scarred to say that incase it jinks us. The weather has been lovely , days like these you can forget dad is ill, i really wish he wasnt .Well back to work again tomorrow, the weekends go to fast. Good luck again Shirley for you and Dave on friday , i will say a pray each night, and one for every body else to, all take care. Anyway hope you all have a good week . luv Mel xxx
I see Gill has let you know of the new notice board thank you for the kind message, I’m so pleased Dad had a good day you really appreciate the good ones & they help you get through the bad ones.
My hubs has been up n down this weekend…I’m knackered tonight… will fill you all in when I’ve got a little more time.
Lots of love & big kisses for Dad XXXXX
Hi Gill,
Thank you for the nice message I’m glad the new notice board meets with everyone’s approval & thank you also for letting Mel & Shirley know about it too I set it up but ran out of time to notify you guys (as Sainsbury’s was beckoning) so it was great to see you had done it & replied to our new person (I so wish our numbers weren’t rising) but your right we are all here to offer support.
I hope the roast lamb was nice (that’s my favourite roast dinner).
Lots of love to you & Jack & big kisses for Den.XXXXX
I wish you hadn’t needed to find us in the first place because I hate the thought of another person having this type of cancer & their loved ones coming to terms with it, but as you are here welcome we are all here to help & support each other.
My husband has a grade 4 brain tumour too so I know how you must be feeling at the moment, when my husband was diagnosed I couldn’t stop crying, couldn’t sleep but when I did sleep I had the most awful nightmares & my life was completely taken over by this cancer (it still is) & many of the other cancers on this site coz when you read about peoples lives you have to find out more (no that might just be me I am a nosey cow)……anyway I won’t tell you it’s going to be ok coz it isn’t, your Dad’s personality will change (if you haven’t already noticed) & it will break your heart but my hubs has the most wonderful days when you would think there is nothing wrong & I cherish those (& they are very very special) so enjoy the good days they really get you through the bad ones (the others on here will be thinking here she goes again, we’ve heard that one before…!).
If you want to tell us a little bit more about your Dad & his symptoms we maybe able to give you a few pointers on what to expect (see I told you I was nosey) but what ever support you need please don’t be afraid to ask…..!
hello all nice one jane you clever girl graet idea we wont miss atrick now eh. Dave is still shitty i swapped the dvd back but hes coping with the tv thank god. I have increased the steds again (SLAP MY WRIST EH) i dont care we know the score eh act first check it out later saves then getting worse eh. We have had a great day concidering dave is bad hes been in the garden ALL day no sleeps or nothin we had a barbie and his son came round to do it for us. My little jodie is one today and her mummy said she is expecting again in dec so thats 8 babies for me at xmas i think i will be sellin me body soon to send some cash to santa.
Had a good night out and yes jane i have a great stinking hangover today but it was worth it i got chatted up by a young en not bad for 47 id say he was lovely and when i told him i was married and not interested he gave me a hug which was nice he was a gent. boosted me ego a bit (SORRY ME NAUGHTY GIRL I KNOW) managed to dress up (EVEN COMBED ME HAIR) lol.
Hope all is well with you guys and a bg hello to Corrine although im sad your here for the same as us im sure we can support each other rom time to time.my fella is 52 called dave with grade 4 too diagnosed and debulked in july. having last session of chemo friday and results of his mri to see progress (OR NOT) whatever the outcome we are very happy together and have been together only 9 years. Love to your dad you will have to post some details for us as we are a very nosy bunch. love shirleyxxxxxxxxxxxxxxxxxxxx
Hi Corrine, my dad also has a grade 4 glioblastoma, he was told on feb 15th. It has been terrible so i can totally understsnd how you are feeling, like all the girls can. I to am close to my dad, and i have two sisters too.My dad is 66 and a very active young 66, things have changed so much for him and my mum over the past 8 weeks, all of us really. I have found it very hard i hate to see my dad like this , he has always looked after us and now it has to be the other way around. I know you know that your parents will become ill before you in most cases, but nothing can prepare you for this, the changes in them is so quick, it is heart breaking. I dont mean to be so doom and gloom, but this is how i feel, i hate it.We have had a terrible few weeks from the time we were told, dad was virtually totally dependant on my mum, but thankfully the past few days things have inproved. things do change daily so my fingers are permanetly crossed. Dad started his radiotherapy just over a week ago , and is on a highish dose of steroids. He had a debulk of his tumor on the 15th march. Anyway i hope i have been of some help to you , it took me nearly 8 weeks to post on here, i was reading all the other ladies posts and they really helped me, but it was the best thing posting myself because some how talking with others in the same boat with similiar smptoms really helps.
hello again its little shirley here. Sorry gill if you missed my posts maybe i was posting all over the show and you never read them. Cant remember what was happening on the last post 23 im sure i told you i passed my theory test yay. Well dave is once again poorly hes much more unsteady now we went for the scan on thursday and should get the results this friday i hope. i have increased the steds again myself but will inform the hozzy in the morning as usual. he is now on 4 and a half mg per day but think 5 would be better so i see what they say. Hes really strugggling now going the loo as i have said before he needs to rush and not always making i t on time. his poor man bit has shrunk and he cant aim in the loo and keeps leaving splashes on the floor which is upsetting him. we had trouble with the new tv he was afraid of it somehow and kept crying when he looked at it was very strange but seems ok now. His breathing a bit better again as hes havin the freash air. Hes doin the back to front words again and missing things with his hands getting very mad (HULK LIKE AGAIN) and is sometimes nasty saying im snappy with him. sometimes i am but its when i can see danger and he cant usually. I think he knows he is worse and keeps saying hes gonna take all his tabs and set fire to the house and stuff so i have hidden them again lol.
Still enjoying my lessons having two this week oooooh rich bitch eh.
hope den is well and jack too. Jane i hope 007 is fine and you too. sorry for bending your lugole other night but i wonder if she reads this site as she knows mine and daves details ? mel glad dads improved on the steds they are life savers litterally eh. julie i hope you are well. all post soon love shirleyxxxxxxxxxxxxx still getting the new ladies mixed upand im not taking ewt im just harrassed with all these babies. xxxxxxxxx
Hi guys.Although I have not been replying to any posts I have been regularly reading everyone’s posts.And I was getting very lost with it all so well done Jane this will now make things easier. Welcome Corinne and I am sorry to hear about your dad – I hope he is doing well at the moment.I have found this website a brilliant place to get support, gather info and enjoy a laugh with everyone (especially the banter between Jane and Shirley – often makes me giggle) My husband has a grade 4 GBM, he was diagnosed back in November last year and on top of that we had just had our first baby who was only 8 weeks old when he was diagnosed (she is now 7 months, my god time fly’s).
Shirley congratulations on passing your theory (if I haven’t said before) but I am sorry to hear that Dave has not been doing so well hopefully the news of another baby in the family will help him fight this.You will have a busy Xmas…I am right that the results of the scan are this Friday???Lots of luck.
Thanks Shirley for you concern too.I am ok now; I think I have been suffering a bit of delayed reaction.I have been an emotional wreck recently. During Harry’s last 5 day chemo the treatment really knocked him about for the first time (he has been very lucky that the radio/chemo therapy has not been affecting him) and I think I had a real reality check of what I could be facing.On top of this our daughter was unwell with acute conjunctivitis and a cold.I just couldn’t cope which I think had been the root of my problem - I have just got on and coped and survived these last 4/5 months and not thought anything about my emotional state and it all caught up on me.What scared me was that one day at work I had a though of just walking away from it all but trust me I would never do that. Me and Harry when out for lunch last week and had a really good heart to heart about everything, he even thought that maybe I was having an affair…..That really made me laugh because apart from that being something I would never do, I don’t think I have time to have an affair.
I am considering maybe going to have a chat with a councillor.I am so scared of my future.
Gill, I hope Den is doing well and how is your boy doing???Mel and Corinne I hope your dad’s are ok too.
