Hello,
My mum (almost 80) has been diagnosed high grade inoperable Brain tumour. It covers the frontal right quandrant. She had no sympoms until she contracted a UTI and her mobility went down hill very fast and i noticed the left side failing. A CT scan then MRI led to our diagnosis. My gut instinct said a neurology issue all along.
Was given the news last week on Weds after a week long wait for a MDT meeting and prognosis is a few weeks to a few.months so palliative care is only option.
Today they have just moved her to a community hospital 40 mins away! And have been told her palliative referral has only been made today!
Everything seems to be moving so slowly is this normal?
HI Shell134
a warm welcome to the group. So sorry to hear about your mum's diagnosis.
My husband was diagnosed with a stage 4 brain tumour in Sept 2020. He was first diagnosed with a "something" on 26 Aug 2020 but by 16 Sept, he'd had surgery, been home, been re-admitted to hospital due to infection and we were sitting down as a family with the oncologist for the first time. Three whirlwind weeks.
I've learned over the past 22 months that the NHS moves at their own pace. Their MDT meetings seem to be a weekly thing so that sets the rhythm..
I understand that you feel that everything is moving slowly. In my case I felt like it all happened too fast - and we're talking a similar length of time. Everyone in this situation is unique. No two people and no two tumours are the same so everyone's journey through this is similar but different.
If you have concerns over your mum's treatment/ care plan, please make sure you ask all your questions. Write them down as they come to mind so that you don't forget to ask them when the time comes at the appointments. Its very easy to become overwhelmed in those first few weeks. Communication is key here for you to ensure you are up to speed with what's going on.
This group is a safe supportive space so please reach out here anytime. You might also want to join (+) Carers only forum - Macmillan Online Community. I've drawn a lot of support from both groups.
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 take time to take care of yourself. Taking "me time" is essential here for you to maintain your own wellbeing and to allow you to be in the best position to support your mum.
sending you a huge virtual hug.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
