If you need a chat, dont you scroll past:)

Hi Danny

I'm very sorry to read that your dad passed away and it's understandable that you perhaps felt you needed to take some time away.

Thanks very much for taking the time to post an update and to offer to help anybody who has been diagnosed with GBM tumour.

Look after yourself

x

Danny thank you for writing this.  My brother has just been diagnosed with GBM4 and given months. I don't know what we should do. It has happened so fast.  I suppose the main question I have is do they mean 2 months or 18 months. It is very confusing.  

I am sorry to hear the journey was so horrid.

LMF May

Lmf May are they offering any treatment?

I just wanted to say they don't always get it right. My husband was given 6 weeks in Nov. He is fitter now than he was back then. 

Haymaj x

Haymaj, I cant thank you enough for posting to me.  I have given up on this forum.  My main worry is that everyone had died.  

He has had whole brain radiotherapy for 13 sessions.  He has GBM4 tumour in right front lobe and they found another tumour so that is why he has had whole brain. 

He does not have any underlying health issues. 

His tumour started to grow again straight after surgery. 

Our family go between great hope that he will be one of the lucky ones and then a dark realism that he has been told its months.

I am so pleased your husband is ok. Reading that did make me happy as I've got a new hobby of collecting stories of Drs getting it wrong. 

X

Hi ,my mum has been diagnosed with GBM high grade Jan 23 in caring for her at home and have moved in . We have been given lots of different prognosis time lines, seems to depend on who you talk to, she’s on Dexamethasone as her Conor idiot was to low for any treatment so was Pallative care only. My work have given me time off to care for her, but keep asking me for a timeline. My mother sleeps a lot now , I have to wake her for eating and medicines  . She’s urinary incontinent , but only seems to urinate at night as during the day her pads are dry, she also gets up to go to the toilet during the night sometimes, but each morning I have to change the bed, it’s like she doesn’t know when she’s wet. I’ve heard that Somnolence (sleeping a lot) is a sign of late end of life stage, so just wondering on the timeline for any other end of life symptoms. I’m worried I won’t be prepared as I’ve read they can be fine one minuet then literally just deteriorate in hours , is this true. What can I expect? 

Hi Danny,

It's absolutely horrendous and I really feel for you. I'm going through the same thing now with my 39 year old sister. She's mostly asleep now so we're struggling to keep her hydrated. Did you find any way of doing this as we're desperate.

Any advice would be great. 

I just wanted to say hello. I am sure Danny will reply when he is back on. I dont know the answer and I am going to reply to GaryS2 too. 

All I know is that this is a tough time in many ways for everyone on this site. 

I hope 230 and GaryS2 have some support. 

LmF may

GaryS2 please see my reply. My brother is the GBM4 sufferer so near to your sisters age. As below/above I dont know the answer but wanted to reply so both you and 230 know that people are with you  but perhaps dont know the answer like me. 

LMFmay

Danny, can you help people who have posted? X

Hi , I've had a few issues with logging in to the site so couldn't reply until now. I was with my sister last night and she's really poorly. I appreciate you all getting back to me. Last night we were trying to feed her greek yoghurt as it's smooth but we only managed to get her to swallow small amounts. We're mixing between using spoons, straws and syringes to get water in to her now but she either hasn't got the energy to swallow or her body can't remember how to anymore.

She has a drip to stop the build up of mucose which I'd recommend as it helps her sleep a bit on a night but if anyone tries it try to keep the dose down as it can make her throat very dry. The nurse will know all about it and they come and change it every day.

Be careful with the steroids they give as some cause muscle wasteage which then causes other problems.

I hope this helps others in the group and I'll try and keep posting.

Good luck everyone