Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Adult Medulloblastoma diagnosis

limasierra
Posted by

I'm fine, thanks. Finally getting back into shape with the gym, which I've taught myself to enjoy... Sort of. 

Never feel you're pestering. It's always a real pleasure to reply and try to help. 

I still get dizziness and vertigo sometimes. I can't lie flat in yoga and tend to descend on my back slowly and use a cushion. I occasionally also feel dizzy upon waking and turning my head, but both symptoms are reducing. They were worse in the first two years and have radically improved this year, perhaps helped by giving up alcohol last August! I'm not sure why I get it occasionally. Like you, the vertigo was a primary symptom in the months leading up to diagnosis. My doctor is not entirely sure why it happens, but my scans remain clear. 

When it comes to chemo, the side effects depend on the sort you're taking, but I felt dizzy and ill throughout. 

Hope that helps and bestest of luck with the upcoming scan

HeatherAP
Posted by

Thank you! I think I'm on the same chemo you may have done; cisplatin, ccnu and vincristine. I'm sorry you get it to, but it's also a relief to know it's not just me!

i wonder if it could be my ears also as i went a bit deaf after starting chemo and have had tinnitus since radiotherapy.  

So glad to hear you are doing well xxx

limasierra
Posted by

Thanks!

I had some tinnitus, too, and it emerged my ears got very blocked with dry wax that I treated with olive oil. That was definitely the radiotherapy. 

Take good care xx

limasierra
Posted by

How are you, Heather? Xx

HeatherAP
Posted by

Hey Lynette so lovely to hear from you

I have finished chemotherapy now which is such a relief, but I'm getting scanxiety for my MRI results due on the 18th. My last scan showed 'spots' which the team couldn't decide if they were regrowth or necrosis which sent me into a panic. 

Eventually they decided that i would go ahead and finish my course of chemo and then see what my scans show. So i feel like there's a lot of pressure on this one! I can't stand the idea of treatment not having worked. 

How are you doing? I hope everything is still going well for you xxx

limasierra
Posted by

Heather!

Thanks for getting back to me so quickly. Really good to hear from you and congratulations on getting through chemo. What an achievement!

I'm OK, thanks. Looking for a part-time job, and still doing wildlife volunteering. I'm becoming a vegan, and am now realising how much I'm going to miss cheese!

Fingers crossed for your scan... That must be so stressful. I think they had a similar thing with one of my scans and luckily it resolved itself. Still, doesn't help when you're playing the waiting game and clinicians can't entirely decide on results... 

Here's wishing you all the best for the 18th. I'll be sending good vibes your way. 

Xxx

HeatherAP
Posted by

Thank you for the well wishes as always :) I'm so glad we've kept in touch! Always makes me feel better hearing how well you are doing.

I didn't know you were volunteering, that's great! Can i ask who with? And best of luck finding a job, I'm sure you'll get one soon :) 

Oh i couldn't live without cheese! That sounds tough!

Take care 

Xxxxx

limasierra
Posted by

Thanks   I've been volunteering for the Wildlife Trust, as a stockwatcher and as part of working groups where we clear scrub and free up areas on the reserves. I love it.

I'm slowly phasing cheese out. I just HAD to use parmesan cheese on my risotto yesterday... 

Lots of good luck and warm wishes your way as everxxxx