As you all know I have been undergoing treatment for a Glioblastoma tumour in my spine which involved radiotherapy and chemotherapy. The prognosis was never good as the disease is both incurable and aggressive, but the purpose of the treatment was to attempt to slow down the tumour progression.
Over the last few weeks I have been in a huge amount of pain, first in the tumour area and then more recently in my neck and shoulder area. I couldn’t sleep for a couple of weeks and tried painkillers, acupuncture and physiotherapy, all without much success. I also noticed that there are areas of my body where I can no longer feel anything and that my chest area was numb and my arms and hands were starting to tingle. So after seeing the doctors a few times I had another MRI scan to see what was going on as the pain was obviously symptomatic of something more serious.
Unfortunately the scans have shown an increase in abnormality, i.e. swelling, that has now spread up to my neck region and that is what has been causing all the pain. So what I am basically saying is the progression of the tumour and related loss of function has been a lot quicker than myself and Jay expected it to be and we are now pretty much at the end of line in terms of available treatment.
The chemotherapy I was on has now been stopped as it has produced no benefits and just made me sick. I will start a new type of intravenous chemo called PCV which is second line treatment. This means it isn’t likely to be effective either, but it is worth a shot.
Our last hope was to have surgery to remove the infected spinal cord and just cut everything out. The doctors and surgeons discussed this last week and told us on Monday that this isn’t an option because the spinal cord is pretty much diseased from top to bottom. They cannot remove spinal cord in my neck for obvious reasons so the surgery option is now out of the window for good.
So that leaves me with the second line chemo option which I start on Thursday for 10 days. If I am well enough next week I will try and bugger off to South Africa to see my family and friends as I am running out of time to see them. I want to spend time with them before coming back to the UK to hopefully continue treatment and see what happens. The problem is that I don’t know how I will react to this treatment and the doctors aren’t keen for me to leave the country in the middle of treatment but some things are more important than what doctors think.
Thankfully I am no longer in loads of pain as I am taking steroids and morphine so at least I can move around a bit easier and get some sleep. We are both trying to be as practical as possible about all of this but it really is a matter of trying to take each day as it comes as there are no guarantees for the future. I will keep all of you informed if something new crops up, which undoubtedly it will.
