I am posting this seperately from my "trials" threads as it is extremely important. I was going to say I don't want to scare you.... but I really do!
Quick recap. Was offered a new trial, and had an extensive medical, followed up by base scans performed the following week. Unfortunately one of my blood levels was too high so outside parameters of trial so didnt go ahead. However, last friday I was told that the CT scan showed that I was showing signs of spinal cord compression. The pictures showed one point where the spinal column had a tumour starting to break into the canal.
Going back to my extensive medical, which included all relexes tested and I passed everything with flying colours. Fast forward to Tuesday this week just before getting an MRI scan, reflex were tested again. The doctor COULD NOT get any involuntary reflex action from any of my knees. Nothing, despite persistingly thumping me with his hammer. This is only 11 days after having no problem whatsoever. Guys, this is only 264 hours!
Straight after the MRI scan an emergency medical incident on me was called as it showed one of the tumours was now pressing directly on my spinal cord. That has happened in the week since my CT scan last Tuesday.
The plan was to give me all my radiotherapy in one go, but was decided today to treat me over 4 working days as the effects would be overwhelming, extreme tiredness, vomiting, diarrhea and bone pain flare up.
Enough about me, I think I have been extremely fortunate. I honestly thought my aches and pains were just because not getting any treatment at the moment, maybe I was getting slightly worse.
Talking with the oncologists, it was stressed to me that everyone who has had chemo was given an emergency number direct to the specialist ward. If anything, and I mean ANYTHING has changed, any ache or pain, numbness, pins and needles, give the number a ring. A specialist will talk things through and more than likely get you in to check you over and maybe a CT scan. Yes, you will have to write the whole day off but believe me, it will be worthwhile. This is no time for the British stiff upper lip.
Even if your regular Onco appointment is next week and you think you will just mention it then, dont! They will never dismiss your concerns. I was told that by my consultant yesterday that he has seen 2 men who's only symptom was numbness wiping their bottons after going to the toilet. Nothing else, just that. So noticed about 20 seconds once a day. No change in your body is too small.
If only one person reading this is inspired (or frightened) into getting any change investigated earlier, I will be so happy. My team was on the ball, and even then, I think I was only days away being paralysed. God knows what would happen after that.