Hi my name is Jen and this is my story

jenugl

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Hi all, Aussie girl from QLD here. Just been reading all your posts. My 43yr partner was diagnosed in May with grade 4 gb multiforme. Don't know how long it took to grow, surgeon seems to think it was a while. Symptoms were poor eyesight (he thought he needed longer arms to read paper - he he) slight pressure on right side of head, then had odd thoughts and finally severe headache which made him go to drs who then ordered a ct scan - and wham... your whole life changes. We are classed as rural - so spent 5 days in local hospital and then flown to Townsville hospital for op. Then 4 weeks later flown to Brisy for 6 weeks of radio and temadol treatment. Last week was put on 2nd week of temadol treatment (having 5 days out of month treatment) this dose of 370mg hit him hard. Severe vomiting, severe headache with rash. In hospital for 3 nights. Oncologist tells me they will put his next dose (which starts 13/10) back to 240mg dose. He is extremely tired and spends most days sleeping - will be asking his dr about dex. as the tiredness seems to have multiplied since he stopped altogether. This disease has got to be the worst as how can you attack the brain like with other cancers so aggresively without doing too much damage. We are taking it one day at a time. Have been pretty good up until about a week ago - as he was pretty side effect free.
I hope you all are going OK. It is soo hard. Like you said Chain you try to control yourself but do feel like it is getting on top of you and feel like you are losing it.
I have only just got the internet on in the last week or so and am just finding out more and more about this. It is so sad and such a relief to know there are other people out there that are going through the same thing. BUT I would give anything for nobody to have to go through this.
Talk soon. Take care guys. Trying to keep smiling Smile

jenugl

Damm... I just typed a big post and accidently hit something on keyboard which deleted it all....
Anyway - to Sam - I hope all goes well with your move back to Sydney. It must be hard to leave all your friends and life over there. But being with your family at a time like this is what's needed. Have a safe trip and stay in touch as just reading all the posts from Chain, Kris & Joy shows that it really does help talking with others who are going through the same thing - thanks to all for letting us join in.
Chain - WOW!! what an experience your lovely brave lady had. I hope my partner Ugly (that's been his nick name for over 20yrs - I don't know why - he's Gorgeous) has something as special as that which will help him in easing his fear. I'm not sure what to make of it either - but I'm glad to hear that it has helped in some way.
Joy - it is so frustrating when you get different answers from everybody - after the operation we were told the devasting news of - you have up to 2yrs left to live - that just devasted us then the surgeon said that he got all the tumour and all that was left was healthy brain tissue and they will just use radio to kill off any cells that might be left behind. We have been led to believe that this is beatable and that he could live for another 30yrs. Maybe we didn't want to ask again for fear of getting the same outcome (2yrs) I have only realised in the last couple of weeks that it's not something we can just treat and expect 30yrs more life. Ugly still believes that to be the case and I haven't asked him if he want's to know the real results of this disease and he doesn't get on the internet to find out. Maybe I want him to believe that after this treatment his outlook is good. I think I'm scared of him knowing he's going to die. I don't know at the moment what's best. I know he knows it's serious but.... I feel like I'm just rambling and feel so confused about what's in my head and putting it down in words.
We have been together for 7yrs and are soul mates and have 3 kids between us. Ugly has a 15yr son and I have a 13yr son and 18yr daughter they don't realise how serious this is but know just by looking at him that it's bad. He use to work on an ashpalt crew building roads and was so fit and now he is losing soo much weight and can hardly sit up straight. Well that's it for now.
Reading all your posts is really helping me Love to one and all and will no doubt speak to you all again. Take care guys.
Jen

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