Mum has grade 4 glioblastoma

Hi all, my Mum was diagnosed with grade 4 glioblastoma in January & has noticeably deteriorated in recent months. She has gone through brain surgery to debulk & had a course of radiotherapy. We are waiting for her review in early June with the Oncology Department. My mum has poor memory & has become very weak & immobile. We understand the side effects of steroids & that she has been through so much. We hope everyday for her, & gladly, she is in no pain. It's a crazy ride & we're all a little dazed but keeping strong. Just difficult dealing with the unknown. Any advice? x

 

  • Welcome to the forum Stubo although I'm really sorry to read of your mum's diagnosis.

    I just wanted to stop by and put you in touch with another member who joined the forum recently whose mum has the same diagnosis. Now I've tagged [@Lily40]‍ in this post they'll hopefully be along soon and you can share your experiences and support each other at this difficult time.

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Hi Steph,

    Many thanks for your response and pointing me in the direction of [@Lily40]‍ , much appreciated.

     

    Best regards,

     

    Stubo

  • Hi,your post is so similar to my mum's diagnosis. My mum was diagnosed in Feb with same tumour as your mum. She's had surgery, radiotherapy but wasn't able to have chemo. She's confused at times and her speech has deteriated, weak from steroids but in no pain. Best advice I was given was by someone who lost their mum in an accident which was that at least we have a little time with our mums to let them know how much we love them and to take each day as it comes. Tricky when it's such a roller-coaster of emotions/hospital appointments, I don't take anything for granted anymore. 

  • Hi [@Lily40]‍ ,

    Thank you so much for your response, yes, Mum's pretty much the same. She's just had her review today and needs to wait until mid-August for another scan, the doctor is reducing her steroid dosage a little which Mum's grateful for, bless her! Everyday is a blessing, completely agree & keeping positive for her, my dad and family.  It's great now she has her wheelchair, which she has accepted gracefully, so we can take more trips to her favourite places. I love the way my mum is trying to keep her spirit alive, can see she's getting a bit fed up because of the mobility issues. She doesn't like to have my 5 year old daughter around due to the noise, which I understand, can be difficult at times but just one of those things. It is one crazy rollercoaster of emotions, you're right.  Somedays my mind almost forgets about it, then others' when it's so overwhelming.  xx

  • Hi, the waiting for appointments can be difficult but you sort of get used to it, even when they cancel and reschedule them.Steroids have made my mum feel better in herself but she's so tired all the time. She hasn't lost her spirit and at times we laugh so much we sort of forget for a while whats going on. These are the times we will remember fondly.We haven't got a scan booked until August so will keep going day by day.

    Totally understand about having good days then the overwhelming ones. The bad ones hit you from out of nowhere,I just give into it and have a good sob, friends at work have got used to me having meltdowns. When mum was diagnosed I didn't believe I would ever laugh or feel anything but despair again but somehow 4 months on we are still going and yes things are pretty gloomy but today we are all here and making memories.

    Keep in touch. Xx