Glioblastoma multiforme brain tumour

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My mum has GBM 4

FranBart
Posted by

Hello,

I don't really know where to start and not sure what to even say so here it goes.

My beautiful mumma got diagnosed September 2016 after suffering from what she thought was a migraine. After multiple trips to the hospital and having so many scans and biopsy, we got the awful news she had GBM4 and the prognosis was about a year. She had radio and chemo that she kind of walked through with minimal side affects, apart from sickness and loss of hair.

She started to lose her vision in one eye that made her unsteady on her feet so ended up in a wheel chair about a year ago. Until about 6 months ago she started to tell us she couldn't see anything and was living in darkness, so we took her to the doctors. A surgeon said he would be willing to operate on her again but during the operation she had to stay away, mum being mum jumped at the chance as she said she just wanted to see again.

However the operation didn't go to plan she asked the surgeon to stop half way through and turns funny trying to pull her tubes out and screaming (this is not my mum) that had to put her in an induced coma so she can recover. She was in this coma for 10 days and we got told 3 times that she wasn't going to pull through so me and my family just sat staring at her. Again mum being mum did wake up very confused and still very aggressive, this was not the end. we got told one of her lungs have collapsed and she has an infections and the doctors was going to take her off all meds, once these meds have finished mum will pass away as she will not be strong enough to pull through, and of course she is still here and this was now 6 weeks ago.

She is currently in a hospice still cant see anything and has no idea who we are, where she is, what's happened she knows nothing and its breaking me and my family.

She isn't eating and I know that's a sign of her body detreating, me and my family have come to the decision that she has had enough as she always said she never wanted to end up like this.

I am confused as to what I should be feeling like as I feel like I'm grieving for who my mum was and what's happened but she is still here so I'm really confused. 

I hope this all makes sense sorry if it doesn't im just a bit all over the place at the moment xxx

Leer1975
Posted by

Hi FranBart, firsty im very sorry about your mum and what she and your family have been through. GBM is horrendous and theres no doubt your mums been through an awful lot bless her. I feel your pain I really do.As I write im laying listening to my dad who also has GBM and in his final days.Im caring for him at home and I can honestly say im terrified of losing him but hes gone already, at least the Dad I knew.

Ive not experienced the operations or hospice but ive witnessed how this cancer has devoured him in 3.5 months from diagnosis. Your mum has been through this much longer and I cant imagine going through this for that length of time. Ive grieved from the day of diagnosis, google has enlightned me as we have had little support from the medical profession. Your mum is fighting and not ready it seems to go, what a strong lady. I hope you feel the hospice are looking after her well in this awful situation and although she may not recognise you or see you its important for you to realise you are there for her and doing the best you can. You cant change things but the way I look at it is that Ive done the best possible care for my dad that I can and if he was judging me without GBM he would be proud. 

Please know that you are not alone, although it sure feels like it, im thinking of you and your mum as I am my Dad whos rattling away beside me. Please take care of yourself. Take care, big hugs xx

FranBart
Posted by

Hello,

Thank you for your reply.

I am so sorry to hear about your dad and I want you to know I am sending you strength and hugs to get you through this horrific time. 

This illness is horrendous and my poor mum has gone from being so independent and the life and soul of the party to completely bed bound and not even knowing how she got there. 

I'm sure your dad would be more than proud of you, nothing prepares you in life for this so you deal with it the only way your body allows you.

You are not alone either sending so much love xx

ShM
Posted by

Hello, 

I have just come on to this forum after a break of a couple of years. I am sorry to hear your terribly sad stories of your parents experiences with GBM. Please know that there are a lot of us out there who are in similar situations, and we all send our good wishes and support to you. 
my Mum was diagnosed with a high grade GBM on 5th March 2014. She was 64 and in very good health up until that point. Her reason for ending up being diagnosed was being unable to read- one of her favourite pastimes. She received the usual chemo and radiation combination. Unfortunately she was unable to complete the chemo as her platelets level dropped. After 6 months they changed to a different chemo as a second tumour popped up- Lomustine. This one seemed better, however after 3 courses again my mums platelets dropped. We were told after 18 months that everything seemed stable and my mum has lived in her new “ normal” since then... until recently. 
for the last 2- 3 months we have noticed changes in my mums speech- it wasn’t great to start with but definitely worse. She complains her sight is worse than it was- again not great. She has headaches at the usual site of scar but also at top of her head, and she is constantly really tired. 
at her oncologist meeting yesterday they confirmed that a new tumour has grown, just behind her eyes on the frontal lobe. Given her condition, they don’t feel it would be beneficial to put my mum through any more chemo or radium. I think my mum expected it as she said without really hesitating that she just wanted to let it go as nature intended. I think she is tired of the fight now, and she has nowhere near the quality of life that she once had. 
We are eternally grateful for the time we have had with her. I prayed that she would be here for her granddaughter’s first day at school. Well she got to see her into primary 4! We have had some lovely cottage holidays at various locations in UK and have some amazing memories that in Spring 2014 we couldn’t have imagined. 
So for any of you who are new to this, or feeling like you need some insight into what may be around the corner. All I’ll say is never give up hope. You may be surprised at how strong the human will to survive can be. I know that there are some people out there who are not fortunate enough to have a long survival and I am truly sorry for them and their loved ones. Occasionally though, even when you are told by the doctors that your loved one is unlikely to survive beyond 18 months, try not to give up.  They may be incorrect. That person may prove them very wrong! My mum is 5 1/2 years into her GBM battle and only now, I think she’s ready to throw in the towel. We have a challenging period ahead of us, and I only hope that when the end comes it will be swift and painless for my wonderful Mum. Good luck and God Bless to each of you out there fighting this horrible disease. Xx

Sharron