Mum's diagnosis

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Hi everyone. I'm new to the forum and thought I would briefly say hello and ask some questions if I may.

Back in July 2023, my Mum was diagnosed with a low grade glioma by the temporal lobe. She had had a couple of seizures which lead to a referral to the Neurology department which then lead to this diagnosis. In November, she had a craniotomy and the surgeon managed to remove 50% of the tumour. The rest is too deep into the brain to be removed by surgery so it will be tackled with at least radiotherapy but probably chemotherapy as well. He did say that the bit of tumour that remains, is beginning to transform so I guess he means it's turning cancerous. Unfortunately, 10 weeks on from the surgery, we are still waiting for the results of the tumour analysis so that we can move on with the next stages of treatment. 

The point of me writing this was to ask if anyone knows what to expect next? What kind of radiotherapy will she have? What side effects will she have? I've done some research but I wanted to ask on here too so that I can help her in the best ways that I can.

Thank you all in advance for your help x

  • You can read my blog if it’s any help x

  • HI LoubyLou

    A warm welcome to the community. So sorry to hear about all that's going on with your mum. Waiting for results is soul-destroying so I really do feel for you.

    This is a safe and supportive space so I'm sure others will be along shortly to share their experience. I can only speak from the experience of supporting my  late husband through his stage 4 brain tumour journey. He had his tumour de-bulked in Sept 2020 and this was followed by 6 weeks of oral chemo (Temolozide tablets) radiotherapy. 

    With regards to the radiotherapy, at his initial appointment he was fitted for his mask. It was full face and tight fitting but it needs to be to allow them to target the specific area without the person wriggling about. It's hard to define which side effects related to which treatment as he had them both at once. The chemo tablet made him feel sick but he was never actually sick. His sense of taste altered for a few weeks too. His main side effect was fatigue and this kicked in about week 4 and lasted for a month after the treatments finished. He was still up and about every day but he tired very easily at that time. The radiotherapy did cause some targeted hair loss along the scar line but it quickly grew back. The skin in that area was red and itchy after a few weeks - a bit like sunburn- but he was given cream to help with that.

    Both treatments seem to impact people slightly differently depending on their personal situation. His biggest complaint about radiotherapy was that they kept squashing his nose with the mask!

    As I said, 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.

    For now thought I'm sending you a huge virtual hug and lots of positive energy

    love n hugs

    Wee Me xx

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

  • Thank you so much for your reply and I'm so, so sorry about the loss of your husband. This really is the sort of situation that you never think will happen to your family. Apart from the seizures, Mum was perfectly healthy so it really did come out of the blue. The surgery also unfortunately caused a small stroke so we've been dealing with the fall out of that too. She's now also having focal seizures so the hospital have upped her anti-seizure medication. I'm halfway through being signed off work for 2 weeks as I'm really starting to struggle. Sorry if I sound like I'm rambling, I don't really talk about this much as it makes me just break down. Thank you for your message back x

  • HI LoubyLou

    this is the place to ramble so never apologise! I'd actively encourage it. Please don't forget that you are going through a lot here too. You need time to process it all and trust me, it takes time.

    You can read my story in my bio on my profile for the gist of our journey. I also wrote two blogs for MacMillan that you might find helpful:                                                                                                                    Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

     “I’m fine”: how do you really cope as a carer? - Macmillan Online Community

    G had issues with focal seizures for a while. It was quite scary to watch but once they got the medication levels right things settled back down quickly.  He ended up on a high dose of Keppra and Dexamethasone. He was able to reduce the Dex dose back down gradually which was a good thing. Those pills made him really bad tempered and he would eat me out of house and home! 

    Take this journey one step at a time. But please remember to take time for yourself here too. Taking "me time" isn't selfish, its essential to help you keep your wee batteries charged. 

    love n hugs

    Wee Me xx

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

  • Thank you Heart️ I find it hard to deal with my emotions surrounding it as I feel the need to just keep going. My dad is also disabled so at the minute it feels like I'm a single mother looking after 2 disabled children. And a dog! Joy 

    I'll read through your blogs, thank you