Hello Heather

I'm so sorry to hear your partner has been recently diagnosed with glioblastoma multiforme.

I did a quick google on it, not being a cancer expert.

Such a real shame that you have little ones and thier dad is only 42.

I hope someone comes along to help who has more experience than me, but if you want to chat, pls send me a friend request as members can only private message chat to each other if they are friends.

x

Hi Heather 

I'm sorry to read your news its horrific, and with 2 small children my heart goes out to you.

my mam was diagnosed a few weeks ago with the same a GBM4. She hasn't suffered with any pain which she even finds strange. However her confusion is some times very bad. I seem to find its mornings and night that shes at her worst.

we have played around with the steroids quite a lot to try and find a balance to counteract her symptoms. when she first got diagnosed they put her on a high dose but it sent her a little crazy. she has been on 4mg for weeks but her symptoms came back left side weakness confused and agitated. They upped them last week to 6mg they help for a few days and now we are back to square one. Although steroids are good and do help they dont help with long term symptoms. it may be worth getting a Dr to up them. I would hope the Dr can also sort pain out. we live in a age where we have some wonderful drugs to help with pain and I'm sure this could be controlled better if not contact a McMillan nurse I'm sure they would be able to help in that department.

I find a lot of reassurance as draining as it is to keep going on and on it does help and my mam does eventually settle. I find distracting her with something else like music or TV or pictures of her grandchildren gets her off the subject she seems to get stuck or stresses about.

I'm a beginner and winger at all this too it just keep plodding on and chipping away. I always find myself saying in my head it's not her fault it's the brain tumour. that seems to help me calm down. Time out too even if its 5 mins in the toilet away from everyone it helps me get my self back together. 

Hi Gillian, so sorry to hear your going through this too it’s so hard watching somebody you love in so much pain/confusion and you feel helpless; I think it’s useful to know about the steroids when he was discharged initially -currently waiting to go to the appointment to discuss treatment in a few days, nobody warned me about how he might be I had to collect him from hospital with our boys in the car and he was very agitated/confused, it’s frightening for him and us because you don’t know what to do! They started him with 8 a day so two tablets in the morning then two in the evening and said after theee says just two in the morning but if he feels he needs them to carry on with two then two; the nurse told me to leave around twelve hours between them and he hadn’t been sleeping properly at all, now I’ve been told he should actually have the second ones near lunch time because of the sleeping issues. The last few days he has been on morphine 10ml four times a day and he seems worse, but I’m trying very hard to rationalise as I know that he is probably quite sedated. Hoping that the appointment will give us some hope, although I’ve really frightened myself by looking at the type of tumour and it’s really quite hard to stay strong. Will try the distraction techniques, I find that I seem to annoy him by asking if he’s ok or fussing but it’s only because I care so much and I don’t know what to do. 

I’m going to contact one of the Macmillan nurses I think, thank you for suggesting it’s heen difficult to know what to do for the best with the Coronavirus situation and who to speak to. Sending love and positive thoughts to you and your mum 

thank you

heather x

Thank you so much, it’s quite frightening what you see when you google it. I was told not to but obviously had, everybody tells you to stay strong but it’s really quite hard when your in it and with everything else going on too! Good to have support/others who can relate x

Honest i have read everything I possibly could I wanted to know everything. I dont have a medical background like my mam so I found this was the only way I could get any information with what's going on at the minute with covid 19. That was until I rang a palliative care team and spoke with a McMillan nurse.

I was told by the hospital we couldn't have a McMillan nurse as there was no resources, but I rang them myself and they have been fabulous. any question no matter how small or stupid they have answered it and even now to the point I'm fighting to get me mam home as shes been placed in a care home due to covid 19, they are fighting along side me.

I dont think anything can prepare you for this we are just learning as we go. I seem to get the impression that everyone that has a GBM has different issues symptoms ect so its difficult to get someone in the exact same position.

my mam tells me every day she is scared and frightened but she cant tell me what's shes frightened of it's strange.l just try and comfort her and tell her I love her and I will be by her side every step of the way.

Sorry for advising you to Google it.

Glad you sent friend request and that others have joined thread.

Thinking of you

Hi there! Any updates?

I"m curious to know what treatment options you've been presented with, and which you've undergone so far. Dr. Google can definitely scare you witless, especially with this disease, but each patient really IS different, and their prognoses can vary a lot. Generally, younger patients tend to do better and can handle more aggressive treatment. And many outlive their initial prognosis by YEARS, so don't give up hope just yet! 

We have a lot of long-term survivors in the OurBrainBank community, and a phone app that might help you, if you want to check out ourbrainbank.org. It was all started by a GBM patient who wanted to participate more directly in her own treatment, and to contribute to future research. She's outlived her prognosis by 4 years and is still going strong. She's totally inspiring! 

I hope you've found some support since your initial post! 

Virtual hugs and warmest wishes,

Stacey