topic Re: Glioblastoma- the confusing, scary and unknown! in Coping with a loved one's cancer

Glioblastoma- the confusing, scary and unknown!

1232michelle — Mon, 30 Jan 2012 09:55:10 GMT

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

Re: Glioblastoma- the confusing, scary and unknown!

Smiley — Wed, 01 Feb 2012 10:47:12 GMT

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 🙂

Re: Glioblastoma- the confusing, scary and unknown!

1232michelle — Tue, 14 Feb 2012 05:49:50 GMT

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

Re: Glioblastoma- the confusing, scary and unknown!

peanutz — Sun, 26 Feb 2012 05:27:21 GMT

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.

Re: Glioblastoma- the confusing, scary and unknown!

1232michelle — Thu, 29 Mar 2012 11:12:44 GMT

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!

Re: Glioblastoma- the confusing, scary and unknown!

rarsie — Sat, 31 Mar 2012 23:17:58 GMT

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

Re: Glioblastoma- the confusing, scary and unknown!

peanutz — Sat, 31 Mar 2012 23:43:28 GMT

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.

Re: Glioblastoma- the confusing, scary and unknown!

Groenevelt68 — Sat, 07 Apr 2012 01:28:19 GMT

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.

Re: Glioblastoma- the confusing, scary and unknown!

1232michelle — Sat, 14 Apr 2012 11:18:56 GMT

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

Re: Glioblastoma- the confusing, scary and unknown!

1232michelle — Sat, 14 Apr 2012 11:21:10 GMT

Re: Glioblastoma- the confusing, scary and unknown!

1232michelle — Sat, 14 Apr 2012 11:24:47 GMT

By the way I have started reading Days like these, i am up to page 40, ive cried, ive nodded, ive laughed already! It seems to be comforting in some weird way!

Re: Glioblastoma- the confusing, scary and unknown!

Groenevelt68 — Sun, 15 Apr 2012 00:47:11 GMT

Hello 1232michelle, In regards to the inappropriate communication, it can be one of the side effects of the tumour. The pressure on the brain from where the tumour has pushed the brain around creates differing symptoms for each person. On the 1st June last year, Pieter forgot to go to work (I was in Bris at the time for work training) and got a call from staff indicating that the bus run had not started (Pieter' job), so I rang around looking for Pieter, once I found him, informed him that it was a work day. Pieter went to work and completed the run (which should have taken 20 minutes but actually took him 40 mins). When he arrived back (completed the run) staff noticed left side of face had dropped (like a stroke) and some difficulty with words, and the staff asked Pieter to go to hospital. The staff then rang me to inform me of what had transpired. Once I got back to town I went to hospital and staff were concerned with Pieter' blood pressure (they were having trouble getting it down), the next day I took Pieter for two CT scans, but that evening the hospital had arranged for airflight to PA due to bleeding in the brain (tumour right frontal lobe with three cysts attached and one of the cysts burst). Once there we were informed that Pieter has a tumour and they will arrange tests and surgery to find out what form of tumour. Within days we found out it was a GBM. The GBM was removed and radiation along with chemo was started. At first it was the short term memory that was effected, with occassionally saying things that was inappropriate. By the time radiation and chemo had finished a second tumour on left forntal lobe had been diagnosed but due to the radiation and chemo it did not get any larger than approx 1cm. We then had chemo for 5 days once a month along with MRI every second month. In Sept last year a small blemish was spotted on MRI in left temporal lobe and by March this year that blemish is now a full blown tumour. No surgery but another 6 week round of radiation and we see the chemotherapist tomorrow and see what she can offer. In the past month we have noticed that Pieter forgets words and uses hand signs to explain what he is trying to express, but now Pieter is loosing more and more words (some words are coming out without being recognised at all). Some of the effects Pieter has gone through are, issues with bowel and bladder, loss of control of body temp, changes in food likes and dislikes, inappropriate words and or loss of words, loss of small amount of vision and hearing, along with loss sexual desire (where in some people the sexual desire goes up). Every person is different so the experiences will be different. Chemo is given as GBM has more than one type of cell involved and so it requires more than one type of treatment to do long term damage. Most GBM has about three different cells structures within the tumour and so just one form of treatment will not kill all three types of cells. People (wider community) can be petty when people with GBM behave in a manner which is not deemed socially exceptable but this is generally due to lack of information, when Pieter is in the community I let him chat but watch the people with whom he is chatting for signs of confusion or misunderstanding, then I explain what the condition is along with the symptoms and find that people are quite happy to continue conversation. Some of the things I have found to assist with obtaining control over what is happening are, asking lots of questions; getting a greater understanding of the situation; making a start on the funeral arrangements (I am dearly wishing that Pieter stays with us for awhile yet) I felt that starting this now will take pressure away for me later (as we do not always think as clearly when the ones we love have pasted away) speaking with Pieter what he would like, I have also looked at cremation jewellery (jewellery that is designed to carry a very small amount of ashes that can be worn as necklace, bracelete, some very beautiful pieces (I have put in my order, and it made me feel great that I was able to cross off an item off my list of to do). The best thing is to document what is happening with your father, enjoy all the time available, and remember it is the tumour that is effecting your father (that your father would not normally behave like this). Good luck, have a great time on holidays.

Re: Glioblastoma- the confusing, scary and unknown!

Summer_Fun — Wed, 30 May 2012 01:39:34 GMT

Hello people Thank goodness I found this forum! I joined the NZ Cancer Society forum but noone uses it. We took my Dad to A and E six and a half weeks ago because of strange behaviour. He is a retired teacher but was driving tour buses as a hobby/part time job. He ended up in surgery the following Wednesday and we are waiting for radiation to start within the next week or two. He has a Grade 4 GBM on his front left and they removed 80% of it. I understand what you are all going through, it is scary and so sad. My Dad was so fit and healthy. I help him every day as much as I can, but I feel that my stepmother is stressing him out too much by asking him to do chores around the house. His front left affects his motivation and decision making, so a simple chore is a big deal for him. I end up doing his chores so that he doesn't get in trouble lol. The strangest thing about this whole thing is that Dad and I are having the best relationship we've had in our life. It has been very rocky since my Mum died when I was 11. He enjoys my calmness and help. I saw my GP yesterday and asked him the long term prognosis, which I haven't asked yet. It could be 12 months (it usually is), but I am looking positively and taking each day, enjoying Dad NOW. I'm not sure if the rest of the family have thought about it. Anyway, sorry for going on but I'm glad to be on this forum Kia Kaha (Be Strong)

Re: Glioblastoma- the confusing, scary and unknown!

Rain_76 — Sat, 02 Jun 2012 06:04:54 GMT

Hi All, I have just been told about this forum, wish I had this last July, my husband went downhill in 4 days and was operated on 4 days later, the nerosurgeon told me to just take him home and let nature take his course, of course I went through with the operation, how could you not give him a chance, then got told it was a GMB 4, and not to bother having treatment, but got to see an oncologist who started treatment, they cut out all of the part that his emotions were in, so he cannot show emotions, he will answer you if you say are you scared and he wil say yes.We have had the 6 weeks radiation and chemo, scan at xmas,2 months after the treatment seemed fine, then were also havreing the chemo tablets every month, then in feb we had another scan and now there are 4 tumors, they have sent us home, that's it, he is such a lovely man, we have been married since i was 17, the kids 29 - 34 aren't coping, our son the youngest just cries, which breaks my heart, and the grandkids are upset, i have organised his furneral, as it is easier now then later, which is so wrong when he is stil here but better than later, we talked about it all, make sure you transfer everything now into your name while they can sign and understand the situation, gary has been so good, but the memory is starting to really go, and we don't go out hardly at all because he knows the words he want to say and mean just don't come out the right way, lucky we live in a small country town, thanks for the chat, enjoy every minute.

Re: Glioblastoma- the confusing, scary and unknown!

peanutz — Tue, 05 Jun 2012 09:21:11 GMT

Hi Michelle, I think medication like Dexamethasone can change people a bit. The way the person deals with having terminal illness can be the cause of problem as well, I believe. My partner doesn't seem to hold back his thought at all. When he isn't happy with someone, he tells them off right away. Things can get worse when the other party becomes nasty as well. *SIGH* As for your question about chemo.... why? Well, the tumour can grow bigger as with my partner. His scan in January (5 mths after surgery) was good. Then, out of no where in March the tumour was back. I read from some where that the tumour can double it size in 2 weeks. Can the tumour spread? I haven't done much research on this but again with my partner, the scan he had 4 weeks ago shows a new spot around 7mm in different part of his brain. We just had another scan this morning so will know more soon.

Re: Glioblastoma- the confusing, scary and unknown!

peanutz — Tue, 05 Jun 2012 09:31:27 GMT

Hi Rain 76, My partner was diagnosed in August last year, similar time as your husband. Where are you located? Have you explored other options? I believe your husband had Temodar/Temozolomide so far. There are other chemo as well. One of my partner's doctors recommended Carboplatin and Etoposide after Temodar failed him. Avastin is also an option if you can afford. It is ridiculously expensive. There are also some clinical trials. My partner's tumour regrew in March. I seek second opinion and now my partner is doing a clinical trial. If you don't live too far away, you can also get cabcharges to go to the hospital.

Re: Glioblastoma- the confusing, scary and unknown!

Summer_Fun — Wed, 06 Jun 2012 00:26:42 GMT

My understanding from the radiation oncologist is that it does not spread to other parts of the body, but they could get another tumour on the brain, which appears to have happened with peanutz partner. One thing that is hard with this type of tumour is the moods of the patient and all people around. I had a falling out with my sister when she was over from London for a week (she snapped at me several times and made me feel like a piece of dirt), and my stepmother is difficult to get along with at the best of times. Good to talk to people here 🙂

Re: Glioblastoma- the confusing, scary and unknown!

Rain_76 — Thu, 07 Jun 2012 08:12:21 GMT

Hi Peanutz, we were asked for $25,000 to $30,000 to go on the trail, gary said no, then a couple of days later we recieved a phone call saying we got on the free trial, but as we live a 6 hour drive south of perth, which gary cannot handle anymore because of his weight lost, the long sit makes his legs numb by 50klm up the road, and he cannot fly anymore because of the seizure we had last time we flew, and gary has said enough is enough, and i respect his choice, It is not easy living so far away from medical help, but this is where he is happy, and I am having time without leave from work, I have the best boss going. It is 11 months to the day since this started, I can count the visitors on one hand, makes me so mad, but everyone says people deal with it in there own way, doesn't make our job any easier being the main carer, there is only so many movies to watch although gary would watch them one after another every day if I didn't take him for drives. We have been married since I was 17, one of those couples to survive, but look what happens in the end, sometimes I really feel like punching someone, but of course you don't actually do it, all types of feeling come and go hey.Anyway hope things are going well with the trial with your husband, I am interested with his outcome. Take Care.

Re: Glioblastoma- the confusing, scary and unknown!

peanutz — Thu, 07 Jun 2012 09:45:58 GMT

Hi Rain 76, Who did you deal with about the Avastin trial and how long ago was that? We only looked into the Avastin trial in March which is just after they closed the recruitment. The quote is from our oncologist. Unfortunately, the trial has to stop due to a scan result on Tuesday which doesn't look good for the new tumour which grows bigger while the original one stays the same. I don't know how they decide that we should stop the trial. I feel quite grateful in a way to know that after 10 months my partner is still doing considerably well. I also agree with Summer Fun that it's great to talk to people here. I deal with this situation by talking to my partner, my best friend and my boss. I find talking about it seems to help me get it out of my system.

Re: Glioblastoma- the confusing, scary and unknown!

Rain_76 — Fri, 08 Jun 2012 09:23:16 GMT

Hi peanutz, We dealt with our chemo doctor at Sir Charles Gardiner Hospital in Perth, after he told us about the multi tumors gary has now has, that was in late Feb this year, we have 4-6 months from then, so 4 months have now gone, doesn't leave much, but everything they have said has turned out, so why think about it hey, Gary is good, cooking tea now, mind you he is not doing so good but refuses my help, so what the hell, he has not had chemo since Feb, only his seizure meds (keppa) and is doing so well, the only problem is lost of words sometimes and he wants to know everything I am doing, and he focus on one thing at a time, drives me insane sometimes, but i get over it quickly as he is the one dealing with this all, it is 11 months to the day, who would think that life changes so fast, but I think we are blessed in a way as who gets to spend quality time, however painfull, with the one you love, thats what gets me through some days, otherwise you would go mental hey. Anyway stay strong and try to laugh, it does help sometimes.