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GBN brain tumour Grade 4

Lynn97
Posted by

Hello I'm new here so hope I am doing this right ! My husband has a GBN grade 4 brain tumour this is his second the first was in 2014 which he had removed and radiotherapy and although a different type since 2014 all MRI have been clear but in February this year I booked him into a early MRI due to problems he was having and we found this new tomour which 8 weeks earlier was not on the MRI so it had grown very quickly he has just started chemo but I know it's only hopefully to prolong the time he has left but over the last two weeks he has gone down rapidly sleeping all day no strength to do anything even going to the toilet is a real struggle and now can't even get out of bed I'm really worried as this has processed so quickly and he has gone so thin any advice would be very grateful x

Jazmine - Admin
Posted by

Hi ,

I'm so sorry to hear about your husband's diagnosis, but I'm glad to see that you have come to the Community for support.

Although I can't give you any specific medical advice, I can push you in the direction of those who can help. First, I would suggest you join some groups so you can chat to those going through similar situations. The Brain tumours group is a good place to go if you need to talk about your husband's condition, while Family and friends and Carers only are both filled with people just like you, caring for someone they love.

Secondly, if you have any medical questions you need answering, I would recommend posting in our Ask a nurse discussion. Just click into the discussion, click any of the 'Reply' buttons, and then type in your message. Run by Macmillan nurses, they will be able to give you advice and support to comfort you at this difficult time.

Finally, if you ever need to speak to someone directly, you can always ring the Macmillan support line on freephone 0808 808 0000, available Monday to Friday, 9am-8pm.

I hope this helps.

Best wishes,

Jazmine 

Lynn97
Posted by

Thank you for your help and advice

WehaveGBM4
Posted by

Hello Lynn,

i have recently been through a similar scenario with my husband who died nearly 12 weeks ago from GBM4. It seems more like 12 days ago. You are at a very hard stage by the sounds of it. Although you will be exhausted yourself do seek/demand all the help you need to make this time as comfortable or at least manageable as possible for you both. My heartfelt thoughts to you both. Love Jan

Lynn97
Posted by

Hello Jan nice to meet you I am so sorry to hear of your loss and thank you for your words they help and mean so much , as you understand my husband has a GBM 4 this is his second brain tumour he had a hemangiopericytoma in 2014 that's a toumour between the brain and the skull it was a grade 3 he had a operation which went well the 7 weeks of radiotherphy  and all MRI have been clear the last at the start of Jan but within about 6 weeks he started having problems again so I arranged an early MRI and we found a GBN so within 8 weeks this had grown , he can't have a operation due to where it is so again after one month of finding it and due to s mess up at the hospital he has just had his first chemo but we know the outcome is not good ! . He can't do much himself as he forgets where things are and memony is terrible , like you said it's very hard and as you have lost your dear husband it must be heartbreaking for you and it nice to meet someone who understands . stay strong my heartfelt thoughts are with you xx sorry about spelling dam text !!

Janey21
Posted by

My mum has been dismissed with stage 4 brain tomour he said months to live she stone from walking to her left side her hand being weak poor balance within few days I have to follow her everywhere I'm relly worried her speech she's haveing to strain they can't operate she declined. Radiotherapy as she didn't want to prolong  keeps sleeping.  I'm scarred and worried