Hi, I am desperate for some information. My sister who is 53 was diagnosed with GBM4 3rd jan 22, by the 7th they had removed the bulk of the tumour and said that there will always be some cancer cells left. She has been worse since her surgery. I heard and I read that people usually go home back day 3 or brain surgery, my sis remained in hospital for 15days post surgery. She was on a cathedral and could barley walk. She has been home a week and still bed bound. She needs carers 4 times a day. Still needs support to get out of bed or use the loo. Why is she so weak? Why is she different from all the other stories of GBM4 patient stories? She suffered from Terri lye headaches and memory loss. The tumour was located back left side of the brain so she has lost some vision on her right side.
but why is she still so dependent? Why can’t she get up and walk? I know everyone behaves differently but we really want her to be strong enough for radio and chemo. The oncologist has decided she isn’t strong enough for radio so they will start her on a course of oral chemo next week. Absolutely dreading it.
why is she taking longer to recover. Is this a sign that she has less time than predicted, that the GBM has already come back? Please can someone shed some light to why she is like this. Is this expected? Is this normal???
HI Shah68
a warm welcome to the group. So sorry to hear about your sister and I can empathise with how concerned you are.
My husband was diagnosed with GBM4 in early Sept 2020 so I can empathise with where you are at.
Please remember that your sister has been through major surgery and that takes time to recover from. Speed of recovery from surgery itself can also depend on how physically fit the person is and their general state of health. Be patient and give her time. Any craniotomy is a huge operation to go through.
Her medical team are the ones best placed to map out the most appropriate treatment plan here. Everyone's situation is unique and you have to trust that they have your sister's best interests at heart here.
It’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
If I may be so bold as to offer you a bit of advice, be led as to what support your sister needs from you, be patient with her. This journey needs endless patience.
Stay strong. Stay positive.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi there,
When my wife (48) went in for her surgery she was already suffering from the effect of the tumour on cognitive ability and mobility. I asked him if the surgery would bring her back to 100%. He looked me in the eye and said the surgery is really just to preserve what's there now, she's already suffered a bran injury and it's unlikely that will repair after surgery.
That was one of the hardest moments I've had to face in this whole terrible journey. As it turns out he was pretty much correct. She brightened a bit after surgery but the confusion and difficulty walking largely remained.
You're right that there just aren't two stories the same with GBMs. I'm so sorry it's left your dad like this.
Take care of yourself and do just feel free to vent here whenever you need.
Chris
