I took my husband into A&E mid November, as he kept falling asleep, had a constant headache and had become confused. A CT scan and MRI later and we were told that it was bad news, they believed it was a high grade butterfly glioma. He spent three weeks in Hospital on a high dose of steroids, and a repeat MRI a couple of weeks later showed that it had reduced in size, which meant that it couldn't possibly be the glioma, he was discharged, and we were told we would see a neurologist within a fortnight. We are still waiting to see the neurologist. He has developed diabetes as a side effect of the steroids, has had a DVT, probably because he has been more inactive than usual, is unable to work or drive and is feeling really really unwell. A recent MRI showed a further reduction, which we took as really good news, but have now been told (by the senior doctor who's care he was under in hospital) that they still haven't ruled out a tumour, and the two main possibilities are CNS lymphoma, which would need heavy duty chemo, or inflammation, non viral possibly autoimmune. They are worried that once the steroids stop it could come back. We have been muddling along in survival mode but thinking that he was healing, and now back in shock. He is terrified and emotional. I am terrified and emotional. Neither options are great, but chemo sounds so big and scary. We have an 8 year old Ds, and I'm trying to keep things as normal as possible, but I'm scared, and exhausted, and I miss our lovely life, and I am struggling to keep the fear at bay. We have an appointment with the neuro next week, and have managed for months, but this next week of waiting feels impossible.