Frightened and scared of outcome

Hi there,

So sorry to hear about your husband's diagnosis. 

I myself was diagnosed with a brain tumour in August 2019. I'm 33, i had had some numbness and sensation loss on my left side, I just thought it was a nerve issue but turned out it was a seizure after visits to gp and hospital.

Anyway a month later adter my diagbosis 0I went on to have awake brain surgery, radio therapy and 12 months of chemo which I've just finished!! It's tiring, life changing and almost surreal, but you somehow cope.

I'm doing well at the moment, it's not been easy at all, in fact it's been tough and scary and lonely. My son was just 9 months old when I found out. But you can get through this.

My husband has been great, but it's tough on partners too.

with the care of the amazing nhs and macmillan you can find strength and support through this. I hope you have good support around you?

I really hope you'll both be ok and keep strong.

Take care

Hi

I  too have numbness and loss of use of  my left leg up to my knee its not to bad in the morning  but by evening it is pretty much dead I have been advised by oncology it is due to the tumour on the right side of my head now 10cm x 6cm grade 3 Oligodendroglioma  anaplastic tumour diagnosed back in May, I have just finished radiotherapy after a course of chemotherapy before 6months on tmz.

I am currently taking tegretol 600mg twice a day prolonged release and demexazone 6mg in the morning and 2mg in the afternoonwhixh has been reduced from 12mg, but the one in the afternoon makes me argumentative and to be honest a bit nasty towards my wife and she is the only person that is around for me does anyone else have this issue as it seems to have been the the course of radiotherapy that has made me like it, they have given me a tablet to take in the afternoon which is prescribed to schizophrenics so I am a bit dubious about taking them

I should be starting more chemo in the new year 

Hi sorry to hear your news and your neurological team should arrange scans and biopsy what steroids have you been put on

Hi sorry to hear your news your oncology team should arrange scans and biopsybut it is scary times for the moment but don't panic, what steroids have they given you 

Hi Maz,

I had a seizure out of the blue and then diagnosed with brain tumour and had a piece of it removed.

I was then on 12 tablets a day including steroids. The steroids worked amazing for me.

unfortunately, I then had to reduce my steroids down as I started taking the chemo tablets.

eventually, I had to stop the steroids all together. My joints ache, my fingers hurt etc etc

if only I could be back on steroids but alas.....I can’t.

I know every one is different and the tablets effect people differently.

Hi what steroids did they put you on if you don't mind me asking please 

Thank you, we are still waiting which is getting harder everyday mentally. He’s like given up, doesn’t want to do much, just sit in the chair watching the tele, I get him out in the car in the afternoon for a change of scenery, he’s eating ok so that something. He’s 64 and was alway fit and healthy and a busy person..

The steroids he’s on dexamethasone, 4 x 2mg in the morning. 

Does he have to take any  in the afternoon