Mum was admitted to hospital on 21st December after a few days at home with what she described as a chronic headache and sickness. On the 21st she was taken in with a suspected stroke. The panic and fear that hit our family in that moment was unreal.
She spent 10 days in hospital. They suspected encephalitis and treated her with antibiotics. With a bit of support, Mum gradually became independent again. She was transferred to a rehabilitation hospital and discharged the very next day.
Mum went back home and was living independently washing, cooking, managing day‑to‑day life. But three weeks later the hand seizures started again, along with focal seizures. She was admitted again with another suspected stroke. After antibiotics, a CT scan and MRI, we were told Mum has a brain tumour.
In that moment the world just stopped. But after a few hours I knew I had to pull myself together to support Mum and the rest of the family. After several conversations with consultants and piecing together what happened in December, it seems she hadn’t had a stroke at all we were treating the wrong issue.
We just missed the MDT meeting that took place last Monday. Mum was discharged home, and now me and my sister are providing 24/7 care. We’re waiting for the MDT meeting on Monday 2nd February, but we don’t know what to expect, will they call us, email us, or contact the hospital?
It’s a really worrying time and we’re just looking for some reassurance or to hear from anyone who’s been through something similar.
Mum has rumoitied arthurites history and been told there is a thickening of the colon.
Any advice would be greatly received.
Hi N3w
a warm welcome to the group. So sorry to hear about all that has been going on.
I supported my late husband through the 3 years of his stage 4 brain tumour journey. As I recall when his case first went to the MDT at the hospital we got a phone call later that day from one of the registrars to explain the plan. In our case it resulted in an appointment with the neurosurgeon a couple of days later and surgery the following week. This was all during covid and I appreciate that not every health authority acts with the same speed.
For now, take this journey one step at a time. Focus on the facts as you have been given them. Avoid Dr Google as he's a scary dude. The not knowing for now is a thousand times harder than knowing what journey lies ahead. Hopefully Monday's MDT will result in a plan for your mum.
Ahead of your next appointment with the medical team you might want to think about writing down all your questions, fears/concerns and take those notes to the appointment. These initial appointments can feel very overwhelming. Your notes will act as script and will help to ensure that you don't forget to ask about something that's important to you.
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 though I'm sending you a huge virtual hug and lots of positive vibes.
love n hugs
Wee Me xxx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
