Aftercare

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Hi,

so glad to see forums like this! The internet can sometimes be extremely lacking in certain topics.

My mum was recently diagnosed with a benign brain tumour. Our neurosurgeon thinks its most likely a ganglioglioma on the language part of her brain and has advised for a craniotomy to remove it. In preparation for this, I've been trying to do some research into the type of after care needed as well as centres that offer these types of care in case Mum needs it i.e speech therapy and any other therapies that might be needed after a brain surgery. Has anyone had any experience with the above and can offer any advice on where to start looking?

Thank you

  • Hi CSKe

    a warm welcome to the online community. So sorry to hear about your mum's situation. My husband was diagnosed with a stage 4 brain tumour in Broca's area of the brain that controls speech, language and understanding in Sept 2020 so I can relate to where you are coming from.

    He had an awake craniotomy to debulk the tumour and we were warned that his speech and language would be compromised. The surgical team talked us through it all step by step so my first suggestion would be to write down all your questions and concerns and ask them. Writing them down and taking the notes to the appointment will help to keep you on track and not forget to ask something that's important to you. These appointments can feel so overwhelming. 

    After he'd recovered from the surgery my husband's speech wasn't as bad as we feared it would be. He can still hold an articulate conversation but he forgets words and gets confused, especially if he's tired. He didn't need any speech therapy. The OT did speak to him a few weeks post-surgery but he declined her support. What he did need and still needs is endless patience. 

    Everyone is different here. Every situation unique so talking to your mum's team is the best place to start. This group is also very supportive so please reach out with any questions and I'm sure someone will be along to offer their words of wisdom.

    It’s always good to talk so please remember 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. 

    For now I'm sending you a huge virtual hug. Stay strong. Stay positive.

    love n hugs

    Wee me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm