My husband was on tegretol but still had seizures. He also had balance issues. Try not to think of how your dad has changed because that will rob you of the now, of the present that you have with him. With GBM there is a high chance he will never get back to 100%. I compare it to someone aging 20 years in a matter of months. It robs us of the person we love but we rob ourselves of the precious time we have left with them if we dont make a conscious effort to continue to reach out to the person we love. I know this sounds cliche but it really is one day at a time from hereon. Try not to get ahead of yourself.
Wishing you strength and love during this difficult time.
Hi Mands & thanker,
We have just had a interesting week. Dad was put into hospital last Wednesday with what the ambos thought was bad gastro. He had woken to vomiting & diahorrah in bed with a fever. They took him to hospital and was treated for same then rang me for some info which I gave and then drove over (i live 50mins away) to see him and find out what was going on. When I saw him his head was very swollen (like a balloon that was about to burst) and then I noticed a small hole on the top of his head where fluid was coming out. I mentioned this the to staff who hadnt noticed! They then started doing more tests and decided to airlift him to Melbourne to put in a drain. On reaching Melbourne they then said no we want to do surgery we think he has meningitis! Which they did to remove a piece of his skull that had been infected. He is still in Melbourne but is slowly improving unfortunaltey he will be there for Chrismtas which has caused a bit of a rift in the family as not everyone is on the same page anymore. On a possitive note they did a scan while he is there and the tumor is not currently growing. Sorry that was a bit long winded. Tanya
Dad id ok, he got through surgery and has had some heavy duty antibiotics. Unfortunaltey he is still confussed and although he knows we are familar he dosent know who we are. How are things with you? How is your dad doing? Tanya
That must be hard to deal with, are your family all supporting each other? I believe this is very hard on the people closest to the patient. Dad too developed a bad cough that kept him (and me) awake 24hrs and the doctor gave him antibiotics even though his chest was clear just incase. His cough has cleared now but he is now less interactive, if that's the right word. He doest talk unless we ask him something, he will sleep all day and night if I let him, and has no idea of the day or time. He wakes at ten pm and get dressed for the day. I guide him back to bed and he is fine with that. He no longer talks about going home. I think he knows now what is happening. It is a funny thing cos although I have had plenty of time to come to terms with this I still was totally shocked and devastated at sudden decline over the last couple of weeks.
My thoughts are with you Tanya
Hi Mands, Yes it is hard to watch someone you love become someone else. I suppose the one consolation as such is they dont seem to be aware of whats really going on. Dad is still happy to see us, can hold a conversation about any topic really just dosent know the details like who people are or their names. The infection is improving and he is more mobile I just dont know if the confussion will improve or if this is as good as he will get. He is dependant on nursing care at the moment. It must be nice and hard having your dad live with you.
My name is Melissa and my father has a grade IV GBM. He was diagnosed in April 09. He lives in Sydney,and I live in Brisbane. My mum is dads part-time carer, but generally dad is still able to look after himself.
I have joined cancer connections after having a bit of a break down. I dont talk to people about all this because I feel that they really dont understand whats happening and how im feeling. I dont want to burden my mother with my feelings because i am trying to be strong for her, which is what she needs and wants from me.
I need to talk.....and to understand..... and to hear from others who understand too.
All i understand right now is that my dad is not the same. He cant talk well due to his stutter, he cant walk well, he cant remember things. I can see him slowly deteriorating and I HATE IT. I HATE ALL OF IT.
I hope that you can share your journeys with me, and mine with you, so that we can all gain some sense out of this madness.
Hi Melissa, it is easy to hate all of this! My dad was only diagnosed in June last year so my journey has been a bit shorter that yours. I also dont have the distance you do which I am sure must be difficult. I am about an hour from my dad and I find that too far sometimes. My dad has just been transferred from hospital after surgery for an infection to pallitive care as we have made the decision not to have anymore surgery etc as he is just not up to it. (this was a very hard decision) However he is relaxed, the centre is lovely as are the staff and he will acknowledge us and talk if asked a question and in a weird way almost at peace (i hope that makes sence)He is however bed bound. I think we are more stressed and upset than he will ever be. The one possitive thing for us is that he is totally unaware of what is going on and how much he has deteriorated. But as you say it is soooooooo very hard to watch someone you love no longer be who they are......I also understand about not wanting to burden others my family are all finding it very difficult and I tend to be the one they talk to so I tend to keep how I feel to myself. I hope this site will be helpful to you. Tanya
I guess there is comfort in knowing that you're not going through all this alone, that others feel the same.
As I type, dad is having his first infusion of avastin, the drug his doctors call "liquid gold". Hopefully this helps him feel better, but at the same Im afraid that if this doesnt work, its our last chance at quality treatment.
Has anyone else had any experience with Avastin?
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.