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.
I jus saw your post and wanted to respond. I am so sorry you and your partner are having to go through this. I have no experience of this type of cancer, but there are many on here who do, and who will give you the support you need. There is also a thread running We talk Brain Tumours, which will help you get to know more, and put you in touch with others who have been there. So very sorry, hugs & prayers
Dear Gayle I know you are at the start of this process, my husband had one course of Temodal last year..(see my profile). All I would say, is once your NHS "Trust" has agreed to pay for this drug - DONT stop - please!! If the funding is there - take it. People in America have lasted "years" on subsequent courses. My husband was only offered one course and now, because he has refused further treatment - is playing the waiting game. We are taking each day as it comes. Good luck girl! Regards Lin T
Dear Lin that is so awfull that your husband has only been given one course why is that, i was told that as long as my partner was well enuf they would keep on treating him so why should that be different for you. love Gayle x
Hi Gayle We had to wait for NICE approval before the one course was given, because it is so expensive, compared to other forms of Chemo. Its a post code lottery in the south of England. We were lucky he was "approved" to have one course and that he has survived 20+ months.. Its so tragic that everything has a "price" nowadays, but I can understand that the NHS has limited funds. My husband has had a good life and I've tried to give him most things he has wanted. But the one thing no one can give him for his birthday is MORE life. Make a promise to tick off things on your partners "To do list" and Keep going Regards Lin T
Its so awfull that money comes before someones life. Iv been told because brain tumours only account for 2% of all cancers there has been alot less funding than say breast cancer this is so wrong and it should be changed. Just found out today october 26th is national brain tumour awarness week this might help the cause. love gayle
hi gayle, totally agree with you on the issue of money and funding. our "legend" dad passed away in march this year to "the beast" gbm cat 4. dont often reply now as it is still raw, but i log in everyday to see if anyone needs any advice.(see our profile). always here, thinking of you all. the legends gang.xxxxxxx
Hi Gayle and The Legend What a day - Jim now unsteady when walking and I'm sure its down to the "swelling". Have begged him today to see the GP and get some steriods started. Whilst me and his sister abide by his wish for no further Chemo, etc, we have had to tell him - on more than one occassion - he doesnt have to suffer in pain. The sleeping is increasing. The lack of wanting to do anything or go anywhere is increasing. He just wants to stay indoors where he feels safe. I would like him to be with me on my birthday in late September, but I'm not even sure he will last this long let alone see October, its all happening so quickly...I'm not ready yet. Still got to make a will, see the GP, etc, etc Thanks for replying. I appreciate it! Regards Lin T
Linda I'm surprised your husband isn't on steroids already as they normally give them to reduce the swelling around the tumour. Has he been on them previously? They can help with his quality of life and you might find that he'll perk up for a while if you can get him on them. If you read my profile we are in a similar position so any questions I can help with please feel free to ask barbara
So sorry to hear about Jim, you must be frantic with worry. If i was you, i would phone your gp and tell him that Jim needs some steriods it would make him feel so much better, and give him a much better quality of life. Thinking about you keep strong.
Hi people Sorry I've not logged on for a bit. I am happy to say Jim is now on Dexamethasone- 2 x 2mg x 3 times a day. I had to write a "note" to the GP to get through to him! I've read some other "threads" about mobile phones being the cause. Well, when we moved into our present home in 2004, we didnt find out until 2006 that a mobile phone mast was two doors away - disguised as a flagpole for the volvo garage. The garage sold out to housing developers, but Jims' tumour grew and was diagnosed in Jan 2007. Could there be a link? In which case, am I next??? Thanks again I'll pop in and out from time to time. Regards Lin
