my dad has just been diagnosed with gbm, he is 77 and looking back now (i had no idea these were symptoms of gbm) he first started showing unusual symptoms such as not making conversation, not saying family members names,
and going into another room as if wanting to be alone, at the end of October 2009. We all urged him to go to the dr as we thought he was worrying about something or was depressed, but he would just say "im fine". By mid November he was showing a few signs of confusion, sleeping a lot and looked as though he was losing weight, only answering yes or no to questions, not laughing or smiling, and then by begining of december looked vacant and not like my dad at all, he stopped shaving, washing, continued to sleep a lot and slept in his clothes and unless prompted would not change clothes. We finally took him to the dr's on 15th December and blood tests were taken which all came back clear on the 18th December. The dr suggested she would send him for a brain scan as his bloods were normal but something was making him confused. On the evening of 18th my dad was in the middle of standing and his legs buckled from under him, he could not move his legs, i could see the terror in his face, he couldnt speak. He was taken into A&E that evening and from then on deteriorated, he had a chest xray in A&E and was then admitted on to a stroke ward, we were not told anything and did not see a dr until after he had a ct scan on 22nd Dec, the hospital said the scan showed swelling on the brain and an area of concern, we were not told what they thought it was and were left wondering what on earth it could be. My dad was put on a high dose of dexamethasone to bring the swelling down before he had an MRI scan. He continued to deteriorate and the hospital did not seem to care or be able to tell us anything. my dad had an MRI scan on 29th Dec. We waited and waited, for news of what it was and how he would get bette, it seemed like forever. My dad became incontinent and could barely walk now, each time he got up his legs would buckle, the dr's did not explain why this was happening. We waited a week until the results of the MRI came through and finally were told that it was a GBM, there was nothing they could do as it was too deep into the brain, it was in the frontal and temporal part of his brain with a midline shift, they didnt know how long he'd had it but it was untreatable and inoperable, they told us he had a matter of weeks left. It took 3 weeks for them to tell us that but they quickly got him transfered out of their hospital and to a local hospital the next morning where he could be made more comfortable for his final days/weeks for pallative care. I am in shock, feel so much sadness, fear, anger, disbelief and also guilt and shamed that i didnt even know this existed until now and it is so common. Now i am just watching for the end signs but am not ready to let my dad go, i want him back, want to see him laugh, smile and say all our names again as even though it has only been about 6 weeks since he did those things it seems like a lifetime ago and all i can see is him deteriorating in that horrible hospital. He is in a lovely hospital now but i am so scared.
glioblastoma is a nightmare, i had never even heard of it until now, yet there seem to be so many people who have had it or are suffering from it, i have now learnt that my dad showed one of the first signs by his loss of speech and continued confusion, i thought it was early alzhimers, although i guessed it wasnt that as it came on so suddenly. I dont know if my dad knows whats happening or not, that is one of the things that is so frustrating as well, apparently he can hear us but can only understand very simple sentances as the gbm is in the frontal/temporal lobe of the brain, and has caused midline shift and is about the size of an egg, in the part that affects, emotions, understanding and speech. He definately shows a response when i say i love him or show him pictures of his grandchildren but much more than that im not sure. I do sense that he is embarrassed and not too pleased that we are having to see him suffer. My dad is such a proud, caring and devoted husband, dad and even more so for his grandchildren. He never used to moan or complain and is so laid back, he doesnt appear to be in any pain. He has been in a pallative care unit in our local hospital since last Thursday 7th Jan, he stopped eating or being able to drink on Sunday 10th Jan as he was struggling to swallow, the hospital wont put him on a drip as they say it appears to distress the patient, all we can do is swab his mouth with a little water. He was asleep for most of the time up until Monday 11th and has been awake most of the time since then. We were told he would sleep away but i now think he is frightened to close his eyes. He has started to reach out his arms and looks as though he is halloucinating. He is withering away slowly and i never imagined in my wildest dreams that we would lose him in this way. I feel like i have been grieving since the begining of December but still dont want him to go but i dont want him to suffer anymore either, I have said its ok for him to go and that he doesnt need to worry about us we will miss him but we will be ok, that we will be there for our mam and our children, we will all look after each other. My dad has 3 daughters and 5 grandchildren. I have a boy aged 11 and my dad's only granddaughter, who he totally doted on, she is only 2 and keeps asking where her grandad is, I am thankful my dad got to play with her, she used to drag him all over the place and he did and gave her whatever she wanted. He is such a brilliant dad and grandad. My 11 year old is taking it pretty hard and was sent home from school on Monday as he was so upset. My dad used to come and watch him play football and watch him breakdance, he was so proud of him, kids are pretty resilient but i dont know how i will ever be able to cope when my dad is gone. It is hard to beleive it is just 3 1/2 weeks since he was admitted to hospital and only 1 week since he was diagnosed.
