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grade 4 glioblastoma

preecy1149
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Hi im new to this chat. my husband was diagnosed with a grade 4 glioblastoma 7 months ago, 4 days after his 56th birthday. He has had a few setbacks such as a bleed from the tumour, blood clots and more recently pneumonia which has resulted in a collapsed lung which the doctors are refusing to treat due to his prognosis. He is a shadow of the man he was. His memory and ability to have a conversation due to word recall is what i find the hardest to deal with as we always chatted. He is now unable to walk more than 10 steps without being breathless. He is currently in hospital due to the lung condition and is now almost refusing to eat. He has lost 2 stone 8lbs and looks dreadful. I am beside myself with worry with his refusal to eat. Has anyone else had to deal with this and has anyone any tips on how to get their loved one to eat please? Also, how do i cope with the knowledge that i will loose my husband soon and my children will loose their father. I am finding it so hard to cope not only with my husbands illness but i also lost my 38 year old daughter 4 weeks ago through an unexpected illness. I have not time to grieve for my daughter even, as my husband takes up so much of my physical and emotional time. I think i am numb and going through the motions of living. I hate seeing other people our age having a life. We have lost our life, i cannot leave my husband at all, i dont go out unless i can find someone to sit with my husband. My youngest two children are in university and due to return in the next two weeks and i am going to miss them so much. I want and encourage them, to return to their studies, although, what i really want, is to ask them to stay home with us, but that has to be their decision, not mine. I also dont like seeing elderly people getting to old age when i am going to loose my husband within the next few months. How do others cope with all this grief and sadness. Sorry that this message probably doesnt flow but its typed as my mind works at the moment, which is haphazard and all over the place.

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    Dad has gbm4.. i can imagine what you are going through. and dread the part your at. at the moment dads about to start his second round of chemo.. he fitted and they did removal of gbm4. then he had radiotherapy, and chemo. and it seemed to be all good. life went back to normal as it could, for quite a while.  he has been told there are more new glios now. we were told 2 yrs roughly at the start, and that it is an unstoppable thing, it will always keep growing..its all about the time, ive realised.  you sound like you are doing a great supportive job to all around you, but please dont forget yourself.. it is good the research they are doing into  liquid asprin, and  avoiding sugar, and eating lots of greens and proton beam therapy. i hope you get some help from cancer research and mcmillan , so you can get some rest time, and moments away, no matter how small.. please keep posting and let others with gbm4  know what  may be helpfull in final months.. ive read a lot.... my hope is that the research one day gives a cure or preventative to this  brain cancer, that even the experts dont know, how or why starts, or what they can do to stop it..  sending you understanding.

  • Offline in reply to cocats

    hi Cocats, its good to hear a reasonably good story about GBM grade 4. My husbands was inoperable and given 12-18 months in Feb this year. We've lost a lot of the father/husband we knew. He is a shadow of the man he was both mentally and physically. What the tumour didnt damage, the chemo,radiotherapy and bleed from the tumour did. Now he just lies in the hospital bed and i fear he's nearing the end or just given up. I hope they manage to remove/treat the new tumours and that you get to spend more time with your father, especially as hes still in good health. Good luck and best wishes to you, your father and family

  • Offline in reply to preecy1149

    it must be so hard for you all there, it is cruel how it takes the personality and physical person  away.  you are doing so well by the sounds of things there, your keeping all your plates spinning.. i can picture what your saying and going through as i know we have it all to come eventually. . please know you are not alone, there are a few people on here. it is important your kids carry on with there studies,  when faced with loosing there dad, anything that seems normal helps..but do not be afraid to tell them when you need them,  you need support too. and im sure your all trying to be strong.

  • Offline in reply to cocats

    thank you, it really does help just to say the words and have someone who is going through the same thing who totally understands.

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