hi all
we were at the hospital to day for debbie's scan result's they said they were fine they were more intresed in her seizures as she takes them every few week's we are pleased her results were fine they did not say much about her results.
what i am angery at she has not to get another scan unless nead be it's as if they are righting her of.debbie does not see the same doctor all the time so they dont no much about her so they will not see the changes in her.she got her scan at a diffrent hospital as they had a back log and the scan was a ct scanthey said they will change her medication for her seizures but that will take 3 months and people wonder why you get angery it makes me wonder if they are not telling us everything.is this right or wrong that she does not get another scan unless nead be i thought if you had a gbm grade4 you got seen to more not in our case.
sorry for going on but i am just angery.
there is so much more i can say but i will be here all night
thanks all
linda xx

Hi Debbie

Firstly brilliant news that Debbies scan was good Its always such great to hear of another clear scan. I know what Debbie, you and the rest of the family were going through in the wait for the results.

My opinion of the NHS is that due to further cuts in funding, I have been told by a friend who is a Dr in my hospital that as people retire or leave their posts are no longer there. Its definitely been the case with my Neuro counselor nurse who when she left 2 years ago her position was not filled, not that I would want that job for anything!I don't think that they are not not telling you anything, its just a breakdown in communication on their behalf possibly because of their increased workload. I would be very angry in your position though, its hard not to be!

The best advice I can give is just to make a nuisance of yourself by phone so that you don't get forgotten about. Its crazy that to get anything done that's what you have to do.

After being nearly 6months overdue I finally have a scan tomorrow,it was only by pestering my consultants secretary that it got booked, it should not be that way!

Stay calm, positive and take care x

Bryn

Hi Linda,

I am busy packing and sorting out some final things for the exhibition in Washington tonight but I will email you tomorrow with some thoughts on how we can make sure Debbie gets the proper follow ups and care she clearly needs.

Great news on the scan and try not to get too worked up about the rest of what's happening, we'll get things sorted out!

Your BT Buddy

Natalya x

thanks natalya and bryn for all your support its just all the changes that we are seeing in debbie now.
natalya enjoy your holiday i wish i was going to
take care
love to all
linda xx

Hi Linda,
That is VERY good news that Debbie's scan was ok - what a relief.
But yes, it must be so frustrating being left dangling like that. I think the Government has such a lot to answer for... but don't get me started on that!
I'm sure now that you've got Natalya helping you out, things can only improve.
I hope her good scan gave Debbie a real boost - lots of love to her, and you and all the family.
Love Deb xxxxx

hi debbie
hows thing's with your dad.
the thing that's making me angery is that she has not to get another scan unless need me debbie is such a quiet girl so i have to watch what i say she got her self in a bit of a state today i had to tell her to calm down.these doctors dont know anything about debbie as she never see's the same doctor's we are pleased that her scan was ok but i want to know why all the changes as there are a lot of thing's going on which i dont like i dont know if this is part and parcel of the tumour so do we have to wait until she gets worse before they will scan her agian as you said debbie dont get me started.
you asked if debbie's results gave her a boost we came home and she just sat in the livingroom her self she is not her self now.
debbie i can go on and on but i wont.
love to all
linda xx

Hi Linda,
I'm sorry that you're soo upset. I totally understand how it feels.
I don't know if this helps but.... My husband( grade 2 astrocytoma)
was seizure free for 15months then suddenly started having lots of seizures.
We are in Ireland and with private health insurance we can manage to get
Scans organised pretty quick. I was terrified as I thought that his tumour had
Changed grade or something...anyway it was same size as previous scan.
Looking back I think stress and lack of sleep causedthe seizures. His Mam was having
chemo at the time and it was alot for him to handle. Maybe the stress your daughter is under has some effect on the seizures.... As would be totally understandable. Anyway, just my two cents... Look after yourself
Liz x

hi liz
thank you for your message debbie has a gbm grade 4 that was another seizure she took yesterday her last one was a week and a half ago.
debbie is just so tierd now she has been like that for a while now she is very slow we are just sitting in limbo debbie is nearly 4 years now with a gbm grade4 so we are greatfull for that the hardest bit with all this is watching her she is only 32 and has a son age 5 its the not scaning her unless nead be thats getting me angrey but we have to just keep going at the moment.
take care
linda xx

Hi Linda,
How's it going this week? Is Debbie any better, or still very fatigued? Have been thinking of you and her lots.
My dad had another scan, and saw the doctor yesterday. He is still fine, the tumour hasn't grown any so we are relieved again.
I'm off to Cyprus on Sunday so if I don't hear from you before then, take care, and I'll write when I get back. Stay strong, and take care of yourself (as well as everybody else!).
Lots of love,
Deb xxx

hi debbie
iam not to bad this week debbie took another seizure on sunday thats 2 seizures in one and a half weeks debbie is still very fatigued she could sleep the clock round if she could she is trying her best to do things.i did not tell you i have put callum forward for pride of britain awards for what he does for debbie hes a littel star when debbie took the seizure she was in the bath and callum had to help get her out and then he phoned me to tell me he has came through a lot in his we life so i think he deserves something.
debbie wants to go to new york but i dont know if she would be allowed i had her out today for an hour and she was nackerd she is more going down the way than up the way but we have to keep going and be strong for debbie and callum.
it's all the changes we see in her everyday is diffrent.
great news about your dads scan is he still keeping ok.
debbie if i dont hear from you before sunday have a great holiday
love to all
take care
love linda xxx

Hi Linda,
How's it going, long time no 'speak'! How is Debbie doing, and your other daughter? When is the baby due?
We're fine, though Dad has had a chest infection this week, it knocked him for six, but hopefully he's on the mend now with some antibiotics. Scans are still clear, touch wood.
Hope you're ok and all is well.
Lots of love, Debbie xxx

hi debbie.
things not to bad debbie has not been great this week she has a cold
so that has set her back it has wipet her out she has been up and down
never 2 days are the same callum wont leave her sight he wont even come and stay with us and that is not like him he knows there is something wrong with debbie but does not know how ill she is she is due a scan feb or march so nerves will be shatterd again i dont know if i told you she took a bad seizure last august and we thought she had took a stroke it was a bleed in the brain she took that was a nightmare.she was talking to me yesterday about things i think she is getting scared now god love her .
the baby is due in 8 weeks now cant wait it wont be long.
debbie it was great hearing from you
i will keep you updated on the baby we dont know what she is having
debbie love to all
take care
love linda xxxx

hi all
i have not been on for a while but i do still read all the new posts
that go on.
its just to let yous all know my daughter debbie got her scan results to day
they are still stable it will be 5 years this june since she was diagnosed
with a gbm grade4
love to all xx