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.
sorry to hear about your partner, he has the same as my husband, i did not realise how bad this thing was until i came on to this site, you people are really great to help me like this, how do you manage to cope knowing what this is i am so so shocked does your hubby know what he has got, is he ok does he still act the same, i am just so scared about all of this do you think they will find a cure soon please please say yes.
thanks for the reply, am feeling increasingly anxious. So many people on these sites are family members and I am worried how my partner (only together for 2 years and living together for a few months) will cope. We had such plans for the future and now everything seems to be in limbo until i know what to expect next... Also very worried about talking to my girls about this, they have both recently left home and are adjusting to that change, youngest just started uni and she is so excited! I worry that I am going to bring everyone down, actually feel quite angry at the mo, especially when some people react like I have told them I have a bout of flu! Has anyone else had that reaction? I wish everyone well on this site, lots of love
Hope you are well today and your husband too, like you and everybody else on this site i can only hope and pray that one day soon they will find a cure for this horrible disease.
Hope you and your partner are as well as you can be at this terrible time, it is so horrible, like me your emotions are everywhere, have you got a local cancer support group that would be able to help you i go there for councilling and also get hypnotherapy it helps me lots, it wont cure your partner but it will help you emotially. It just seems so unfair that this has happened to us all, like you looking forward to a long happy future then to be struck down with this, we have been together for 11 years and have an 9 year daughter Martine. Martin my partner has beeen physically very well right from the start but not quite so good on the mental state very big personality change and bad short term memory loss, not the same guy i met at all but he is still here with us so i am so gratefull to that take care
Hi Gayle, I probably didn't make myself very clear, it's actually me that has the tumour, I'm just worried about the impact on others especially after reading this site and my partner Paul has 2 children that live with us, they are 11 and 8 and I get on great with them and they don't really see enough of their mum although Paul is a fabulous dad they are well cared for but I worry about the possibility of him having to care for me in the future, just wish i knew what lies ahead. Also my eldest daughter is on a real downer at the mo, she is very sensitive and has struggled emotionally this year and lost her beloved dog and now the horse she looked after, (she is 21 but devoted to animals), I'm worried how she will handle the news but think she has the right to know? What do others think? Jeany xx
Sorry i went back and read your first post, and you are clear its just my head thats not very clear at the moment. You have a grade 2 tumour, not that any tumours are good, but grade 1 and tumours are alot easier to treat than 3 and 4 and have a much better prognosis as far as i know they may even be completley curable hopefully. I think that you shoud be honest with your daughter it will be very hard for her but she will find it hard but will cope with it we all do. My partner was admitted to our local hospital on the monday with terrible headaches, he was told that night there was a shadow on his brain the next after a second ct scan he was told that it was a tumour, on the friday he transferred to a specialist hospial where the bi-opsy was going to be done, he just kept telling me there was nothing wrong they could not find anything and told all the docs and nurses to tell me and the rest of the family the same. He finally told us all together on the sunday night what was wrong and that he having a biopsy done first thing in the morning, i have been with him at every appointment since then and now he hides nothing from me, in fact i actually know alot more than he does, so tell your daughter everything she deserves to know.
How are you all doing i am in severe shock since last speaking to you all i have been doing lots of research on the net and i am not liking what i am reading i am so bloody i am going to loose my husband arnt i. I am not bloody ready to lose him he is only a young man we have our whole life in front of us why is this happening too us, what are we going to do without our husbands. I thought he was going to get better i mean they are doing an opp and giving all that treatment why cant some one find a cure to this horrid thing i just want to scream and shout all the time about this, i know all you gys probably feel the same?
Hi Jeany I'll get Martyn from the we talk brain tumour site to post to you his wife I believe has a grade 2 or 3 so he will have lots of info. Izzywizzy yes GBM does eventually take your loved ones from you but don't let that stop you living, I know its hard but make the most of what you have and don't waste time thinking about what will happen, lifes too short. Nobody can predict how long, the docs always err on the side of caution if they say 3 months and you last longer you're satisfied if they say 1 year and you only go 9 months then you feel cheated. Hopefully you will find lots of support, advice and a few laughs from this thread and the we talk BT thread, both deal with the same issues so try and read both. take care barbara
First of all can i say how sorry i am for your recent sad loss, i saw your profile, you did your beloved Mick proud, thank you very much for our helpful advice especially at this sad time for you, you and your family are in my prayers.
I am so scared the more i read about this dreadful thing, its bad enough that its killing our loved ones but all the horrible side effect too paralysis, seizures, memory loss, pains and everything else does everyone suffer the same way, i am sorry to ask so many questions at this sad time for you.
Hi Izzy I wouldn't say everyone suffered the same symptoms but generally they do but at different degrees, some have full blown fits some just small tremors. It also depends if they have the tumour removed as the operation itself can cause problems ie if they have the bone flap put back or not. The location of the tumour also has a bearing as does the type of medication and amount. The best thing you can do is take it sowly one day at a time and get advice from here as and when you need it. As you have probably read most people here have had some experience either with debaulking, radiotherapy and chemo, seizures, personality changes etc etc so whatever your up against your not alone. take care barbara
