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.
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
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.
