I'm on treatment 22, with 8 left. The last few weeks , I've felt fine, abit frustrated at how well I've been, but then took ill and was really sick and admitted to hospital for a week. After scans they found more swelling and another bleed.
1 week later I returned home and all has been well.
But then on Sunday, it began. I woke with pain in my head/eyes. I've now got a completely dry mouth, it hurts to swallow. Then out for a dog walk and lost vision , which panicked me. I mean I'm getting blurred vision anyway but I completely lost vision.
On with the dog walk I felt weak and lost coordination. I panicked and had to take a moment to compose, and plan my journey home. I went really weak and felt my legs where going to collapse. After getting back my oxygen levels where low. My temperature was low.
I was so fatigued on Monday after radiotherapy, then today I went for lunch with my wife and lost all coordination again. Had to take baby steps to every available seat until we reached the cafe we ehere heading for, in our local garden centre.having to hold on to my wife, as scared I was going to fall really hit me hard. I've got mouth sores now also. Just generally don't feel myself. Hitting me now all at once and I'm actually scared of how bad I'm going to get.
Sorry for the long arse message but need to express and vent.ive got constant worry on my mind at what my next scans are going to show once trestment ends .
HI Chris
lovely to hear from you again but sorry to hear that things have been rough lately. Its a rollercoaster ride.
I'm not medically trained and can only comment based on my experience of supporting G through his GBM journey but I'd suggest speaking to your CNS about the changes you're experiencing. It might be that a medication tweak can level things out a bit.
This is a safe and supportive space so I'm sure some of the others will be along shortly with their words of wisdom. Please reach out here anytime. Venting is allowed...in fact its encouraged. We're here to listen. We get it. You're not alone. We've got you.
One day at a time. One step at a time and try not to think about the "what ifs". Focus on what you know is relevant to you. Easier said than done I know.
Sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xx
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