I am my hubby's carer & I need any info that may be helpful for me for what I face ahead. we are halfway through radium (6 wks total) away from family & friends & he started chemo orally at the same time.
Firstly sorry you guys have been dealt this hand.
Over the last 23months I have learnt alot about this disease. Mostly though everyones needs experiences are so very different. Get informed, ask questions with your oncologist, coordinator (if your lucky enough to have one) read up lots but keep in mind everyone is different.
My husband held such a positive attitude which helped overcome alot of our anxieties.
GBM won on 6/9/13
His favourite saying was Never Give In, Never Surrender he lived true to his words.
thank you for your reply. I am sorry for your loss. It is very difficult to come to terms with but your husband sounds a lot like mine, he is a positive person but he knows his time is limited & he is keen to get his affairs in order once we return home following his radium treatment. I know fully he is thinking of me and what lies ahead. Did your husband become upset over small mundane things as I notice my husband is. I have read quite a bit on this disease and how interpersonal relationships and behaviour changes occur over time. I just hope I can cope with what lies ahead but I am fortunate to have my daughter and son and daughter-in-law who are a godsend during this.
Hi there,
sorry to hear your news.
great your husband is positive and you have support from your children.
gbm is a tricky bugger.
not only is the prognosis not so great...as if that's not enough to deal with...but the treatments and tumours effect on the brain can impact on mood.
my dad survived 13 months from his diagnosis.
we had an awesome 13months...(mostly)
of course it was always at the back of our minds...we knew we most likely didn't have long.
crying is good
so is laughing
i guess my dad was lucky, he also had such great friends around that didn't shy away from his illness. (i hear others aren't so lucky in that regard..it is a hard thing for others to face also)
He still kept doing the things he loved til two days before he passed away...still bush walking and gardening.
It was certainly not always easy.
He had times of being confused and we had some incidents of quite severe dysphasia (him not being able to understand language or speak back...) but thankfully they resolved with upping the dex.
I wish you and your family all the possible best.
love each other up
get good support
another great resource and support i found was:
ozbraintumour@yahoogroups.com
Dennis Argall who i believe started the group is a wealth of information and a kind and compassionate ear.
please keep writing here too...there is always someone who will listen.
xx
Love to you
Tatsoi
Hi 😞 sorry to hear about your husbands diagnosis. You are now onboard the most unfortunate rollercoaster of your life.
My husband has had a BT for 19 months now, it has slowly grown & changed over this time from something they thought quite benign to now thinking its a GBM stage 4.
You need to remember a few things-
They never mean what they say (even though it breaks your heart to pieces) If he's on Dexamethasone, (or a similar steriod) for brain swelling, you will find he can/will start to get roid rage. If he gets like this, stay out of his way.
If you can, try to get off this drug, it steals life away from them.
You will have great times- and then all of a sudden, really shitty times (read my blog- you soon see a pattern of ups & downs)
He will get upset over little things, because he's freaking out on the inside and because the brain tumour does funny things to the brain waves. A wise person on here once said- you have to remember, your losing him, but he loses all of you.
So much do to- in what feels like such little time.
Brain tumours are the nastiest cancer out there. No one really knows how to treat them, as each one is so different. It affects the control centre of the body- things like when to go to the toilet, what to feel during emotional times, etc.
My husband has what he calls, flash mares. During the day, he whilst awake will see a horrifing nightmare & can't control it. It really disturbs him. (for example, he will see a car accident occur if we are driving along, & he sees it in disturbing detail)
If you have any questions, please feel free to ask or PM me.
Stay strong, find someone to talk to as you will need it.
Mel
What to expect? that is a hard one as everyone is different and their responses will be different. GBM's are anything but good. The positive is that the brain doesn't feel pain. Kevin's tumour was quite advanced and large when diagnosed. He was a new man after his first op and we had a lovely Christmas and 4 weeks in between op and rad/chemo. Most patients cope really well with the treatments. for Kevin they didn't work though. His dx was16 Nov 2012, second op 15Jun 2012, chemo iv (nil side effects) . From his 2nd op, the MRI showed a new smaller tumour in front temporal lobe. There is a protocol so it seems that they won't do any other ops or treatments without a 4week break. the chemo iv had no effect on the new tumor but seemed to stop the 1st tumor from re growing. He had the small tumor op (3rd op) 26Sept. hat year, Was due to have more chemo or sterotactic radiation. Specialists to decide. Before that he took his first seizure 26Oct. In hospital 6days. the MRI showed that the front temp tumor had grown. I couldn't believe the scan when I saw it. We tried Avastin. For Kevin while it was "treatable" he had hope. I overheard him say to one of his mates. "I don't think this will work." He knew. While having the Avastin, he took another seizure and was hospitalized pending assessment. He took a massive seizure on the Mon night, did not regain consciousness and died Wed morning.
Sorry for the not good news storey.
However, throughout that year Kevin was blown away by the love and kindness he received from family and friends. We were showered with love.
The main side effects for Kevin was tiredness. As the year progressed he became tireder easier. He gradually lost interest in things he enjoyed like crosswords, listening to the radio, reading the paper. I watched his shed layers until he was happy simply sitting with me in the "treehouse" (back verandah) enjoing the sun, rain, trees, birds and the sky. He completely shed anything artificial as he slowly became part of a spirit. it was lovely to watch and we enjoyed just being rather than doing. While you have some energy, do what you can.
Asphagia was caused by the seizures and was very frustrating for him. It took me 1 hour one time to work out he wanted his radio. I had explained to him about Asphagia and once he understood it, we could have a bit of a laugh. Although one time he told me that "I had become dumb since he got home."
Brain cancer can also mimick dementia, so be prepared to enter his reality. I have the privilege of working as a massage therapist with dementia px. It made it a bit easier for me.
We considered ourselves lucky to have warning and could spend time together re connecting and loving each other.
It was very difficult at night times. He could be difficult then. There were toileting issues, so pull up padded pants became the go. Eventually a wheelchair was needed. It made it easier for me to get him to the bedroom. during the day he didn't need it.
Having said that, when Kevin was having his radiation, we met a man with GBM who walked around like nothing wrong with him, very friendly, looked great and he had just hit 3 years. Who knows????
Wishing you all the luck....
PS. Kevin didn't need the dex until much further on. We were lucky. He would have dex after an op then it was weaned off slowly. His face got a bit red and swollen but that's all. One round of dex got a bit too much and he couldn't sleep and would be up at all hours which made him angry. He would give me lectures about things "I did wrong." Again I entered his reality. He could get bad temepered when I was driving and would apologise. I said to him once that he didn't need to apologise as I would assume that the apology was inherent in the temper tantrum. He was ok with that. Please please please DO NOT take any outburst, verbal abuse etc as personal. Cancer itself sometimes can bring out the negative qualities in people. D
thanks for your comments. We are nearly finished the radium & hopefully head back home this coming Friday. Chemo Dr said my husband will pick up once home after a week or two. He will have a month's break from chemo. we will find out more details this coming Thursday. He is very tired & weak & his short term memory is shot to pieces & he does get aggro about little things then he apologies. This site is very helpful & gives me some insight on what to expect although I don't think my daughter approves of me doing this. I am hoping we can get back to some form of normality once home but for how long, who knows. He was sick last week so they upped his dex & nausea meds but will be weaned off dex I imagine once we go home.
