A place for people affected by brain tumours or brain cancer to support one another...
My mum had an operation 16 days ago to remove a tumour (gbm) that had spread to both frontal lobes
the op went as well as it could in that she survived, can speak, see (out of one eye), hear, move her arms and legs etc she can also remember who we all are and can remember a lot in terms of long term memory
surgeon happy - he removed more than 90% of the tumour
my mum however has absolutely zero drive or desire to get out of bed and has no short term memory whatsoever. Does not know the year, where she is, what she had to eat 10 minutes ago etc can not process information, make a decision, have a proper conversation etc
the care she is getting is ok - she has been passed around a bit on different wards but we can’t really complain. She has had a water infection and a bed sore infection which now seem to have cleared up
The short term memory and loss of drive are devastating. She needs to get out of bed and get stronger if she is to have chemo and get us some precious time together
Has anyone experienced anything similar with frontal lobe tumours? Can the brain repair itself over a longer period of time? Doctors are telling us all we can do is wait and see if she improves but I’m losing hope. If this is as good as it’s going to get then it’s absolutely heartbreaking and she will just be bed bound waiting for the tumour to come back
Frontal lobe tumors are the scariest in my opinion since the frontal lobe controls show much, including short term memory. My mother had two full reductions of tumors, one in her rear parietal lobe and one in her frontal lobe. In both cases, her symptoms did get better with time after the surgery. They didn't return to normal but they did get better. I also noticed that when she was stressed or tired, they tended to worsen for a short time. The biggest thing was we, the rest of the family, learned to adjust to deal with the new reality.
I hope in your mum's case, she will improve enough to leave her bed.
Thanks - do you mind me asking how long it took before you saw improvements? I am losing hope that, if she’s not showing improvements within a few weeks, she never will. Am I being impatient? I just don’t see any positive signs, she seems worse each day
Hello 1983. I really think too early to tell. The brain can rewire itself but it is too early to tell .. take a photo album in and let her tell you what the photos are of etc..things that are familiar to her. Take a photo of the outside or inside of her home and encourage her to talk about it. The brain is so complex and the doctors don't know if she will improve as everybody is different. Is she on steroids as thst seems to help too.
Hi thanks for the reply. They reduced the steroids a day or so after the op, she had a good couple of days, came off the steroids, really deteriorated and developed the infections.
Definitely came off the steroids too soon. They have now upped the dosage again, but we are yet so see an improvement, maybe a slight improvement today.
Its so complicated...... I play music to her and she can remember the words to songs, can recognise pictures of family and friends, but she can’t remember what she had for tea 5 minutes ago, or who came to visit her that day etc
She has no desire or drive to do anything, and she is extremely delayed.
I don’t want to sound down on my mum here, she is so brave going through the operation and I know she is fighting this, I just need her to get better
Improvement certainly weren't measured in a few weeks. I'm guessing it was more like two or three months after each surgery when we started noticing improvements in her cognitive functions. It happens so slowly that it is hard to notice the exact day and say aha! Most of the time it was sitting around visiting and then realize that she hadn't done XYZ in awhile.
Thanks for the reply. My mum (now 3 wks after surgery) is hopefully coming home next week. The hospital are saying at this point there is no more they can do for her. She is too weak for radiotherapy or chemo. And there is a very small window of time for her to get better before the tumour has grown back to a size where radio / chemo will not be an option.
My mum has no desire to do anything. I think she would be physically able to stand and move around (I have her doing exercises in the bed) but the physios will not work with her as she refuses to do anything. The infections she’s had have not helped.
Plan is to start cannabis oil ASAP and get her home so we can try and stimulate her to start responding. I started this thread with memory loss being the issue but I think the biggest problem we are facing is the effect this has had on my mums drive and motivation - we can not get her to do anything and if we can’t get her going there will be no treatment and the surgeon said today ‘a couple of months’
I knew the realities of this disease but I’d hoped and prayed for some quality time for my mum this is so unfair it is horrible the absolute worst thing I’ve ever been through
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