Hi all, just a greeting and to see if there are any diagnosis similar to myself. I have a grade 3 astrocytoma cdkn2a/2b. I discovered or should I say symptoms began last year during covid.jan 2022. I woke up ( having only a mild covid sniffles) in the night for my ( I’m 46 ) mid night pee; and went to bed waking up 15 minutes later numb all down my left side and then began to /seizure fit. I was lucid/aware all through it. A and E visit was to be honest useless. Being diagnosed with influenza. So a second happened. I chose not to go to hospital from the experience as I did recover after a couple of hours. Then in my new job I had my 3rd seizure which I was taken again to AandE. They have a CT after much complaining where they found what they called an arachnid cyst (easy to remove they said but I’d have to wait until November 2022 for more information. I decided to go private which took a few weeks at spire to see a consultant. He said I’m afraid that’s a G2 tumour. I referred me straight away to Walton, in the mean time having 30 other focal seizures in my left arm and face ( I’ll explain more if anyone’s interested). So due to strikes and having a kidney stone 5mm and rushed surgery. I had my tumour out in jan 2023. Unfortunately only 60% was removed and it was diagnosed as a grade 3 strocytoma cdkn2a/2b. I have had radio therapy and am now on chemo tablets. So please ask anything as I’ve typed loads lol
HI W J
a warm welcome to the online community. Thanks for sharing your tale. You've had quite a journey to get here.
I'm supporting my husband through his stage 4 brain tumour journey. He was first diagnosed in Sept 2020 and has had a few issues with seizures on and off. They have been focal seizures. We are at the palliative care phase and have been since the end of Feb 2023. Last month his seizures spiralled out of control but were quickly brough back under control thanks to a massive increase in his Keppra dose and steroids.
This is a safe and supportive space so please reach out anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
I'm sure some of the other members will more relevant experience than me will be along to share their words of wisdom shortly.
For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
HI
Things are going as well as they can be around here. G has deteriorated speech/understanding-wise but is still in miraculous physical shape. The local hospice nurse is coming to check on him tomorrow so we'll see what she says. No one has assessed him for 3 weeks and the nurse is going to see a change.
Hope all is well with you
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I’m ok really. Low platelet count is pausing some treatments. Another MrI next week if my bloods are ok. Mine is growing very slightly but no more seizures. I am getting muddled and forgetful but th
’s by the by. Am having some kidney problems so I hope that it won’t stop the MRI with the contact fluid. I’ll wait and see what they say . Anyway much love n hugs and hope it goes ok x
I’m really sorry to see that your partner has passed. No words can be said I guess that makes it any easier. I always see your comments and your a great support to all that bravely venture into these forums. I’m sure everyone is here for you as much as you’ve been for them.
again I can only offer my condolences 
x
