What can we expect after surgery?

Everyones different. I had a tumour removed in August and was fine a few hours after, went home, back to work and have had no problems since. If its an awake craniotomy I think she will be over the actual surgery faster. I hope it works out for you and your mum 

Thanks for your reply, and I'm so glad you're doing so well

HI ICH501

a warm welcome to the group. So sorry to hear about your mum's diagnosis. Life's too cruel.

You've asked one of the million dollar questions. The best people to advise you are your mum's medical team as everyone is unique and these GBMs impact different people in different ways.

My late husband G had an awake craniotomy in Sept 2020 to debulk his tumour. He had his op on the Wednesday and was sent home on the Friday. He developed a post op infection and was re-admitted to the hospital on the Sunday until the following Wednesday. 

When he got home, he was a bit more confused and muddled than usual but in time that passed and he returned to how he had been pre-op pretty much. You need to remember that its major surgery and that there will be residual swelling in the brain that needs to heal before you can fully gauge how things are. In our case things were slightly complicated by the fact G had a huge seizure two days before his op and that moved the cognitive goalposts a fair bit making it hard to know whether it was the seizure or surgery that had caused some of the changes we noticed. His tumour was in the area of the brain that controls speech, language and understanding so those were the things most impacted.

Within a few days of being home, G was out and about again. He was 50 when he was diagnosed and very physically fit which stood him in good stead during his initial recovery from surgery. We were advised not to let him out on his own for a week or two but he totally ignored that advice, partly because he needed time alone away from the house to try to process all that had gone on.

Be led by what your mum wants and feels up to, would be my rule of thumb.

There's some great generic info on the main website. I looked up the link for you

Treatment | Macmillan Cancer Support

This is  a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also 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.

Please also remember to take care of your wee self here. A GBM diagnosis is a lot to process for all involved. Taking some "me time" isn't selfish here. In fact, its essential to help you keep your wee batteries charged to allow you to be in the best position to support your mum.

For now though, I'm sending you a huge virtual hug and lots of positive energy. I hope surgery goes smoothly

love n hugs

Wee Me xx

Hi there, just from our own experience my wife had symptoms of confusion that led to her diagnosis. Following the surgery she was certainly brighter but her ability to process information was still impaired. The surgeon told us this would be the case but it was still hard to take.

Everyone is different though and I wish you and your mum all the best with this.

Chris

Thanks for you reply, frustratingly my parents didn't really ask any questions. They were just happy to agree to the surgery and I feel like their expectations are probably unrealistic with regards to what will happen or what she'll be like afterwards. I appreciate your insight.

Thanks for your reply, as awful as it is to hear everyone has been through these difficult things it certainly makes you feel less alone. My mum deteriorated quickly leading up to her diagnosis and at present isn't really able to walk without help. Her personality, moods and emotions have been really effected so she is very 'flat' and absent in lots of ways. I don't know if that is something we will see an improvement in after the surgery or if the purpose is just to buy her some time. 

My husband had a frontal lobe tumor which effected his emotions/speech( word finding/memory which is why I originally took him into AE,

Many of those symptoms disappeared after surgery and the fact that he was back at work part time two weeks after surgery possibly help rebuild those pathways.

However, personality, emotions etc I don't think they will be the same and I've resigned myself to fact that he isn't the person I knew before diagnosis, but he is happy, positive and currently doing well.

Thanks so much for replying, it's amazing to me how well people do after these operations. Really helpful to hear that some of the personality changes are unlikely to revert back after the op. My mum is typically a very emotional, loving and affectionate woman and since the onset of her symptoms that just is no longer the case. It sometimes feels like I've already lost the essence of who she is without even realising it at the time.

I hope things continue to go well for your husband and you. 

Everyone different and depends where tumour is and what they can find do. I had mine debulked in Augest 23 and I had a bit cognitive memory loss and a bit weakness. But weakness resolved. I had radiotherapy for 6 weeks but my bone flap became infected and had to be removed in January this year keep challenging her walking memory Also depends on your surgeon and protocol etc

Thanks for your reply and insight, I hope you continue to do well