You are in a long dark tunnel and its absolutely pitch black. Suddenly up ahead there is a tiny speck of light... just a glimmer.. but it makes your heart leap with hope.
Well, as I said before, what a difference 24 hrs can make. Dr Steve, St Mary's consultant,came to see and examine me. After just 24 hrs of high dose steroids I can move my legs again ! Up and down, side to side and even raise them off the bed. This is apparently a remarkable response and I sign that radiotherapy could indeed work. I can only stay on the steroids for a few weeks because of the problems they cause and so the problems with my legs would return. With radiotherapy I would have an 80% chance of shrinkage lasting for maybe a few months !! I will have to have an MRI scan to see if my spine is stable and if it is I can at the very least use a wheelchair again. He is going to discuss changing back to Sutent with Dr P too which if Ok, should reduce the need for blood transfusions plus (fingers crossed) start shrinking my tumors again since I've had an 8 month break from it.
So another huge shock.
And another big decision.
How brave am I ?
Can I grow through with awful radiotherapy again ?
The side effects will be very worse as my whole spine will have to be treated. Dr Steve has promised he will dope me up with mega pain killers for each session and they will keep me here at the hospice throughout the treatment.
Am I strong and brave enough to keep fighting ?
One look at Martin's face gives me the answer. Whilst there is a glimmer of hope I can't stop fighting, not even now. Even if the radiotherapy works this is no cure of course but it may make my final weeks/months much more comfortable and would possibly mean I wouldn't be bed bound. The change back to Sutent may work or may not but if it does may slow the progression of my disease elsewhere again.
There are no guarantees, I know that, I have been treading my own path fighting RCC for some time now in the hope it may help not only me but those who find themselves in the same position as me. The one thing I have learned is that you deal with one problem and another pops up straight after.
The most important thing with all the operations, procedures and drugs is to remain steadfast, strong and positive. Smile and laugh with those around you... even if there is precious little to smile about.
PS. Reading all the comments and thoughts from those following my journey has left me quite emotional and even more determined to fight to the very very end. May I thank all of you from the bottom of my heart especially those who have taken comfort from my words to combat their own personal grief.