Glioblastoma- the confusing, scary and unknown!

[1232michelle]

Hi everyone My name is Michelle and I am a freshly married mother of 2. I have a 10 month old and a 2 1/2 year old. The week before Xmas 2011 my dad started to act a little weird. Sleeping longer, aggressive, throwing up and unable to walk properly. He went to golf and his mates noticed his left side was failing him. They took him straight to the hospital, he was transferred to a nearby bigger hospital and then airlifted to rpa. By 8 am the next morning I was by his side with my brother hearing the unthinkable, he had a 5.5cm tumor on his right front temporal lobe and would need surgery. Dad is only 53 and has always been super independent and healthy so it really shocked us all. So the roller coaster begun........... 3 days later he had surgery and they removed the tumor and his right front temporal lobe. We were told it looked nasty but 2 weeks later we got the pathology results telling us it was a gbm grade 4. Sorry this is really lengthy! I'm just happy I've finally found others that can relate. Anyway long story short I am now in Sydney with my 2 babies while my husband is in brissy working going through dads radiation treatment with him awaiting chemotherapy to start. I just have a few questions for anyone who can offer some advice. My dad is not comprehending the severity of his condition and thinks that after this treatment that everything will be ok. He looks great and is feeling well but he has only just started week 2. I know that the diagnoses cannot be wrong but how quickly is quick for a tumor to grow? Dad had an MRI 3 weeks after surgery and their was no regrowth so he thinks everything is fine. I'm finding it hard to know who to ask questions regarding the tumor. Is it the oncologist? How big of side effects did everyone have with radiation as dad so far is having none.... Sorry I could go on forever, I'll leave it at their for now. Thanks so much Michelle

[Smiley]

Your dad is lucky to have family with him. My husband was diagnosed with a GBM in April 2010 when he was 47 & we are still fighting it . In regards to asking questions , best advice is to make sure either you or your brother goes to all appts with your dad & ask anything (however simple the question may be) - even write them down between visits. After our surgeon the radiation oncologist was our first contact but after initial 6 weeks the chemo oncologist became our primary carer . He has been a fabulous support to us & answers everything with honesty which is exactly what we have asked for. Good luck & pls contact me if I can help you with anything else - this is a great forum & I have found it really benificial 🙂

[1232michelle]

Thank you for the reply smiley. I have now spoken to dad's oncologist and I found the cancer council hotline was amazing. We are now just over half way with radiation and everyone is struggling being in Sydney. We all seem rather snappy at each other. My brother and I are finding it hard to be super patient with dad and his memory loss and his inability to comprehend things. As he looks well and appears still quite healthy it has hard to remember that he cannot help it. He is determined to go back to work as soon as possible but their us no way that he could return to his former job. We would love for dad to retire and have some fun but it is really hard to approach tihis without upsetting him. Have you found anything like this? And if so how did you deal with it? Thank you so much Michelle x

[peanutz]

Hi Michelle, I can relate to you about finding it hard to be patient with your dad when he looks well. If your dad wanted to get back to work, let him do it. I doubt he can do it as well due to the side effects of chemo and radio therapy. Anyway, life is too short to do things you don't want to. Your dad may think that he will beat this thing and lives his life as normal but truth is it will stick with him forever. Life with GBM is like a roller coaster ride. It may seem to be a smooth one sometimes but there are always up and down time. I have only experience this the past 7 months. My partner was diagnosed with GBM in August last year. He appeared to be fine during the first 3 weeks of radio therapy. However, his energy level dropped big time in the 2nd half. Once he was well enough, here came the chemo time. The first round was OK as the dose was lower than the following rounds. He's finished his 4th round a couple of weeks ago and at the moment not doing so well in terms of energy level and strength. By the time he feels well enough, he will be knocked down with the 5th round of chemo. Well, I can't give you much advice. Just hang in there and be patient. I know it's not easy and if it helps, try talk to people about how you feel I find it helpful for me to deal with this situation.

[1232michelle]

Peanuts it's so nice to know that other people completely understand. I'm sorry for the late reply, I am back in brissy packing up my house as my husband and I have decided to move our kiddies 11 hours south to live with dad so we can have as much time with him as possible. I also didn't think it was fair to leave all the drs appointments up to my 25 yr old brother. How is your partner doing at the moment? On tuesday dad has his first MRI since radiation, I'm a little nervous as I think it will be a huge shock to my dad if it's not completely clear. Love and strength to you both, and I completely agree on the roller coaster concept, that's exactly how I describe it to everyone!

[rarsie]

Hi Michelle, I have a son with GBM diagnosed last Dec, prior he had gr3 Anaplastic Astrocytoma, been operated 2 times now, just waiting for it to raise its ugly head which it will I believe soon. My son believes he will be here in another 50 yrs and we let him think that, agree with your dad that he can go back to work as he wont be able to but he needs to hang on to that belief. That is the only thread of hope they have. Our family is always disagreeing, but thats life as we are all under stress, keep on keeping on I hope I can be your friend Regards Sandra, I live in Charleville Qld

[peanutz]

Hi Michelle - my partner is doing OK, I think. He hasn't had any treatment for the past 2 months. He was supposed to have the 5th round of Temodar in early March but we discovered the tumour has grown back. The NO gave us a couple of treatment options but it's likely that he will participate in a clinical trial of which the screening process will conclude next week. Hopefully, he can start the treatment right after Easter. Hope your father's treatment goes well.

[Groenevelt68]

1232michelle, My husband was working as a bus driver when one morning slept in and had to be reminded about work, once there the staff thought he was having a stroke due to dropped face and sent him to hospital. The next day he was airlifted to PA and the specialist came by and informed him he would no longer be allowed to work. It was a blow as we were starting to build the house and required the monies. I too had to resign due to the care my husband would require. It has been very interesting since June last year. With GBM it is better to be diagnosed as a younger person as it is indicated that the older a person the less chance of long term survival. Health also plays an important part, if the person is healthy and had good brain function prior to diagnoses then a high success of survival but in saying that all specialists will indicate that as everybody is different and the brain so complex they cannot really give lenght of survival rates. At first when working with someone who is experiencing loss of brain function it can be very frustrating for both the person and those who are providing the care. It will take time for both parties to come to terms with the situation (it took me a few months to come to terms with the situation and how to work with my husband without taking away to much of his independence), I was lucky in a small aspect due to having worked for 11 years in the disability sector, which I could use when working with my husband. I have found by obtaining as much information from doctors, internet, forums have assisted me in understanding the situation. Ask questions no matter how silly you think they are, as it may be that they are not. With my husband the tumour played around with his blood pressure, so we purchased a machine to monitor the blood pressure which has been a fantastic help for both doctors and specialists. I also have started a diary (at first due to medical issues as advised by specialists) which I write how the day was in both medical and personal areas, I write the stories my husband tells about his life, about our daily lives, and in time I can edit and compile the information and give to children and grandchildren as a legacy of his life. Also take lots of photos when I can, again for legacy for children and grandchildren. The most important part of this all is to show love, support and enjoy life as much as possible with what time is left.

[1232michelle]

Good evening lovely GBM supporters Well weve made the huge move into Dads house and I couldnt be happier with the decision. Dad has really been opening up about everything and it seems he is understanding what is going on a little more. He has made the huge decision to retire but the scary thing is he doesnt seem to qualify for a disability pension until he uses up all his hard earned long service leave. This is a little tricky as he wants to use it to completely pay of his house, i dont want to sound horrible but my father has been handed a really crap deal and the government wont help him but they are happy to help out people who just couldnt be bothered working!.....sorry but i just had to let that out!!!!!!!! Dad has just completed his first of 6 rounds of temodol, he got a little sick, i think this was more due to the fact that he had an extra day by mistake (lesson learnt, be the one to sort the days for him!) We got through the first MRI with grey still being present in the scan but no new growth so the rollercoaster goes on and we deal with the next scan in 3 months! We leave in one day for a family holiday with Dad to Hamilton Island for some well deserved relaxation, it frightens the hell out of me that this could be his last holiday but I guess i really shouldnt think like that. A few questions for you all, are your husbands, sons, partners etc aggressive? Dad seems to say the most innapropriate things to people and he genuinely seems like he doesnt understand why they are offended. Second question, why chemo? I dont understand how it helps when this type of tumor does not usually spread. Is it just to keep the tumor at bay? Ok im just going to vent here for a minute then ill be ok......ungrateful petty people who complain about such tiny little things annoy me as I always think how hard it must be for dad to sleep, function etc knowing what is growing in his brain and not knowing when it will cause us grief all over again. I feel like the last 4 months are an out of control blur and i wish that i had control of something!!! Sorry for the bit of negativity with this post but if i type it on here than i am fine! THanks for reading xxxx

[1232michelle]

Good evening lovely GBM supporters Well weve made the huge move into Dads house and I couldnt be happier with the decision. Dad has really been opening up about everything and it seems he is understanding what is going on a little more. He has made the huge decision to retire but the scary thing is he doesnt seem to qualify for a disability pension until he uses up all his hard earned long service leave. This is a little tricky as he wants to use it to completely pay of his house, i dont want to sound horrible but my father has been handed a really crap deal and the government wont help him but they are happy to help out people who just couldnt be bothered working!.....sorry but i just had to let that out!!!!!!!! Dad has just completed his first of 6 rounds of temodol, he got a little sick, i think this was more due to the fact that he had an extra day by mistake (lesson learnt, be the one to sort the days for him!) We got through the first MRI with grey still being present in the scan but no new growth so the rollercoaster goes on and we deal with the next scan in 3 months! We leave in one day for a family holiday with Dad to Hamilton Island for some well deserved relaxation, it frightens the hell out of me that this could be his last holiday but I guess i really shouldnt think like that. A few questions for you all, are your husbands, sons, partners etc aggressive? Dad seems to say the most innapropriate things to people and he genuinely seems like he doesnt understand why they are offended. Second question, why chemo? I dont understand how it helps when this type of tumor does not usually spread. Is it just to keep the tumor at bay? Ok im just going to vent here for a minute then ill be ok......ungrateful petty people who complain about such tiny little things annoy me as I always think how hard it must be for dad to sleep, function etc knowing what is growing in his brain and not knowing when it will cause us grief all over again. I feel like the last 4 months are an out of control blur and i wish that i had control of something!!! Sorry for the bit of negativity with this post but if i type it on here than i am fine! THanks for reading xxxx