Just needed a place to turn to today as struggling lots. My wonderful loving and clever sister was diagnosed with a GBM4 in July following a collapse. At the time of her debulking, the overnight swelling was so bad they needed to remove part of her skull to prevent further damage to her brain. When she woke up, shed lost left side mobility and was having severe memory and confusion problems and was unable to speak or eat. Because of the size and complexity of the tumor and the additional damage from swelling we agreed not to have further treatment (chemo/radio etc) and potentially prolong what we see as her suffering. The section of skull was never replaced. We were given wildly varying expectancies but we're told "not more than 2 to 3 months". Slowly she regained her speech ability and ability to eat and drink independently but no more physical movement and her memory is still awful.
For a short term she was moved into a hospice but as the months ticked on, we decided to take her home. Caring for her is the hardest thing I've had to do in my life as she needs to have everything done for her. We do have lots of support from a local hospice charity and carers 4 times a day but its still just constant stress, sadness and worry. She is 32 years old and bed ridden and shes a different person now. Some days she forgets her own name and doesn't have a clue who I am. It's been 5 months since diagnosis and she is still going. She would hate the condition shes in now as was so independent before and she is suffering. We've had so many difficult conversations as a family (her asking us whats wrong with her, then forgetting, then asking again the next day. Her asking us to put her out of her misery etc) My sister is gone and we are caring for this other person in her body. She is often childlike and also often says malicious things.
People say to enjoy the extra time we've been given but i dont feel we know who this person is. I haven't been able to grieve for my sister as her body is still here. The cancer has reached its fingers into every corner of our lives affecting all of our relationships, taking its toll on my performance at my work, my relationship with my husband and even the way my parents and I look after ourselves. I just dont want her to suffer anymore and I feel so selfish for saying it, but i want to be able to grieve properly for the sister that is gone. I just feel like its bracing yourself and constantly waiting for punch that never quite comes.
Forums all seem a little sparse about Glioblastoma, are there any carers with similar experiences? Has anybody felt the same watching thier loved ones suffering? Thanks and sorry for being on such a downer, just having a low day
