We Talk Brain Tumours

Dear Helen from braintrust,

Thank you for the information and support. I would gladly pursue any new developement/trial etc if there is hope to give my husband more quality time. PCV, I know is an option but I dread the aggressive nature of the treatment and what it will mean to his quality of life. The dietry restrictions themselves would be a nightmare to impose with his increased appetite due to the high dose steroids he is on.

Beedarsh

Dearest Opal,

Have just tried to post to you on hear but seems to have got lost in cyber space. I'm still finding my feet on here. I just wanted to say that my heart goes out to you. I'm thinking of you. Keep positive which I know is hard when things are so tough. I know how you feel as I am still coming to terms with the bleed my husband suffered last week and his subsequent loss of speech which we are still struggling with.

Big Hugs to you.

Beedarsh (sorry if the lost post turns up and I've repeated myself!)

Dear Ann,

Thank you for your reply. I want you to know how supportive and brave you have been unknowingly. Yours was one of the first journeys I read about on this website many weeks ago and it truly gave me the courage to approach our dedicated neuro nurse  and ask her to start a care package for me to be able to care for my husband at home when the time comes. It was on the day we were told his GBM4 is progressive. I would never have been able to have done that had I not read your journey- thank you.

Beedarsh

Husband diagnosed with Glioblastoma 9 weeks ago. Downhill ever since. I am in a dark place and looking for ways to help him.

catg

Sorry you are also joining us.  Is your husband having surgery/radiotherapy or chemo at present? We are here to listen and share our experiences.

My husband was diagnosed with GBM IV in January 2010, feel free to read my profile.  I'm a newbie to this group too

jms

Hi catg, unfortunately you are in the right place for advice/ support. Welcome to you even if its not somewhere any of us want to be. Has your husband been offered any treatment as yet? My mum also has gbm 4 and we are now at the stage where they cant give any more treatment, it hurts like hell and breaks my heart every time i see her. Im so sorry you are going through this, please feel free to ask any questions you need to, although nobody can take your pain away there are a lot of people on here with real understanding of what youre going through. This is something that i have found helpful. I for one am here to listen if you need an ear, take care and make sure you dont forget to look after yourself Xxx

Dear jms, postmark, mummaggie, loulou2, Debs, zoeteen, beedash and stephenp, thanks you all for kind messages and support. I did panic on Monday night and feel a bit silly that I didnt know how a fit presents itself. My husband has to stay in hospital now until we get delivery of hospital bed downstairs. Not sure if bleed in brain or progression, but wouldnt scan him as said treatment would be the same whatever.

What would we do without this site? Like so many I had been reading for a while before I dared post anything.

Beedash..is your husband home now?

love to you all

Opal xxx

Opal,

Don't you dare feel silly!  We all have or will enter panic mode from time to time.  There is no set sign for the onset of a seizure, they can start in many ways, eyes blinking, deep swallows, loss of movement etc, etc. We just have to be alert to all possibilities.

Catg,  So sorry you had to find us, but as you can see you will get the advice and support here to help you along this awful journey.

Take care, Martyn

Thank you loulou2.  Mark had Biopsy done in December and since then has not had function in left leg and left hand. Inoperable and was given course of 6 intensive Radiotheraphy ending 21st Jan. Has been very poorly since...especially over the past  two weeks and I cannot decide if it is the after effects of the Radiotheraphy , the Steroids or the Tumour itself. Intense fatigue and cold sweating and sleeping a lot. The speed with which this has taken over our lives takes my breath away. 

Thank you  jms2603 .Mark had 6 sessions of intense Radiotheraphy ( last one 21st Jan) . Since Biopsy in December has had no function in left leg or arm. He has been poorly this last week..fatigue, cold sweats, staring into space. I dont know if this is the after effects of the Radiotheraphy or the Tumour progressing. When I asked my G.P he said that I must remember that this is a very aggressive tumour. The only way I remain calm is by caring for Mark and by keeping busy and not thinking about tomorrow.

Cx