Yesterday I got a call from Addenbrookes asking me to go in today to discuss stereotactic radiosurgery for my brain lesions. Having had no end of tests etc I thought that finally we had a treatment plan and we could crack on. Oh no! It turns out that next week I’ll have my mask made, CT scan to mark up the mask and another MRI. If that MRI shows there are more smaller lesions then I’ll be having full brain radiotherapy instead. I’m so sad and disappointed that now, I won’t know until I actually turn up for the treatment, what type I’ll be having. Does anyone else feel like their journey is like being on a ride that changes direction without warning? I just want a clear plan of what we’re doing.
Hi Beachlover I am so sorry to hear that the plans are changing. I know how frustrating this will be for you. It really is a rollercoaster ride, with so many twists and turns. Your team are being very thorough to make sure you get the best treatment, but it’s a shame this was thrown at you last minute.
Sending you a gentle hug, and hope the treatment goes smoothly for you x
