My wonderfull dad, has glioblastoma multiform. he has so far been de bulked, and had radiotherapy course, and is on chemo pills, been frantically searching for as much info as the internet and drs will give , has anyone else been through this gbm4.
Hi cococat. i am so sorry you are going through this. Your so right, your story relates to myne. My father did 100 push ups a day right till he received the mri news. i think it may be bit different than your dad as there was already 5 tumors when initially found. so we have no idea how long they were there as he had zero symptoms until 6 weeks ago, then we were told 3-4 months left to live.
You have some time left with your dad and thats so amazing and good for you and your family! Spend all the time you can with him and treasure the moment.
My dads was aggressive also, went very fast. if you have any questions i will sure do my best to help answer them. Is there only one tumor? Did cancer start in the brain? I just wish i could reach in the computer and hug you...i know exactally how you are feeling and what you are going through. Contact me anytime. "hugs"
Pam
hi pam46. thankyou, and sorry to hear of your poor dad, yes dads was a primary gbm4, hes having all the treatment now, doing and staying positive. thankyou so much for your kind words , I hope you are copeing best as you can, that was a shock for you all to then. sending you my best wishes.
hi cococat. my dads cancer, after a biopsy of one of the brain tumors, was melanoma that metastisized to the brain. So the primary was skin cancer which we could not find on him but was an agressive spread to his brain. He was my world, always his little girl. I totally understand your not sleeping. that was a huge problem for me too. my sister and i cared for him right till the end so he could pass at home with us by his side. so sleep from the worrying and stress did not come and you just dont know how to get through the next day. my sister is a nurse and she talked me into seeing my dr. and i was prescribed some sleep aids and nerve pills to help me cope. it took the edge off and i was able to get some sleep. Dont feel bad if you need to do the same, i would of been a complete disaster if not for the medicine.
Do you live close to your family? Support and love of family and friends is so comforting and helpful. Can i ask if you have any children and what age? I have a daughter who just began university, so i am trying to be positive and the best mom i can be to her also as she copes with the loss of her grandfather.
i also have a strong faith and that has helped me so much too. I believe dad and mom are together and they are all around me now.
Also some words for you....i am not a very strong person...i worry lots all my life and suffered from anxiety most of my adult life so honestly when we got the news about my dad i thought i would not be able to manage. but i pulled through with the help and strength that you pull from within that you never thought was possible. i have moments when i crash and i feel like i am starting all over again from the bottom...but in time that passes. So what i am trying to say is we are all stronger than we think . I knew i had to be strong for dad or he would of worried so much about us girls.
Sending you strength and hugs today and the days to follow to you and your family.
hi pam46, started with skin cancer for your dad then thats terrible. yes have good family support near. were so relieved he came through the opp, then we were on tender hooks waiting to see how the radiotherapy courses would affect him, and now hes on the chemo part.
Hello Pam - we really wanted my mom to come home but the community team were concerned that my partially sighted dad would have problems with all the extra furniture they would need (bed, hoist etc) and we all work full time. They also said they were concerned with the fact that we would only get 4 visits a day from carers, and as she has to be turned every two ours would we be able to cope. Can I ask how you handle this aspect, although she is in an excellent nursing home very close to where we live and we have 24x7 access I am still devastated that we do not have her at home?
I have found reading your responses really helpful - thanks for sharing x
Hello Floss, my sister is a Registered Nurse so she helped us so much. i just followed her lead in care for our Dad. We had home care come in to Dads home and set up some pulling pulls, bath chair and a wheelchair which we needed to use towards the end as Dad loss use of his legs. We stayed with Dad 24/7 between the two of us and helped him with everything. it was so hard and tragic to watch my Dad suffer and he knew how hard it was on us to watch but i am so thankful we were able to keep him as comfortable as possible right to the night he passed away. My beautiful Dad took care of our Mom for years during her illness, we did the same for Dad. We live in Canada, so it may be a bit different than where you are from but the Dr. gave us the same medication they would use in the hospital to help Dad. If you have any questions at all, please feel free to ask. Hugs xo
Hello Floss, my sister is a Registered Nurse so she helped us so much. i just followed her lead in care for our Dad. We had home care come in to Dads home and set up some pulling pulls, bath chair and a wheelchair which we needed to use towards the end as Dad loss use of his legs. We stayed with Dad 24/7 between the two of us and helped him with everything. it was so hard and tragic to watch my Dad suffer and he knew how hard it was on us to watch but i am so thankful we were able to keep him as comfortable as possible right to the night he passed away. My beautiful Dad took care of our Mom for years during her illness, we did the same for Dad. We live in Canada, so it may be a bit different than where you are from but the Dr. gave us the same medication they would use in the hospital to help Dad. If you have any questions at all, please feel free to ask. Hugs xo
My dad has gbm4, diagnosed last June 2015. My dad had no surgery due to location which was a disappointment but we pressed on with chemo, radio and a clinical trial. Tumour reduced by 40%, he was all good for 12 months actually weirdly enjoying his life as normal - working (he is a businessman), socialising and even exercising. We were almost getting complacent.
Then it all went downhill after a couple of seizures in June 2016, almost a year to the day he was diagnosed.
Also, one aspect that really makes me upset is how his short term memory started to be affected - he was an incredibly bright guy, PhD's, knew everything, never wrote anything down. I remember I saw him visibly breakdown, first time I had ever seen my superman dad cry. Makes me so sad.
Anyway, I am thankful for the time we had from diagnosis and just pray for a miracle as he is still with us.
Only yesterday from his bed, he laughed at a joke which made me so happy.
they are working on the liquid asprin research at the moment and proton beam therapy, I too am hopeing for a cure to be developed that will suddenly stop this horrible tumour in its tracks. appreciate you takeing time to post..
Hello cococat, just a quick message to say I hope things are not too bad as we haven't heard from you for a while. I'm hoping that the reason might be that your dad is having a rotten time with his chemo, so please give him a hug from me.
