Ugh. Still shit here. Had my 4th blood transfusion yesterday, platelets now critically low.
Just seen my oncologist. Still no answers, the head CT showed a little bit of suspect area in the left frontal lobe but could be just bleeding due to the low platelets. Nothing linked to the hypoglossal nerve (which would cause the tongue issues) but it wasn't specifically flagged for the radiology team doing the CT and write up which is frustrating.
I'm being sent for a head MRI and a bone marrow biopsy, both will likely be a couple of weeks wait for the appointment and then more time for the write up.
I discussed treatment options. If the bone marrow issue is due to cancer then I'll likely have an 18 week course of IV chemo (paclitaxel, bye bye hair). If there are any head/brain tumours then it would be most likely targeted radiotherapy. But it's all very uncertain at the moment as to whether the two things are linked or completely separate. My oncologist says what I'm experiencing is quite unusual so he's not being drawn on what's likely to happen treatment wise until he has more info.
I've been prescribed steroids for a fortnight to help with the headaches in case they're being caused by inflammation. I had them before when I had IV chemo and they're horrible, cause a racing brain in the middle of the night and so on. I can also up the morphine to deal with the pain, so I might try that first.
Feeling very sorry for myself but trying to look on the bright side - the wait for further tests and write ups means I should still be able to take my daughter on our planned trip to London in May half term, and then start whatever treatment I need after that.