Not wanting to moan, but here’s the thing: when you are told you are highly unlikely to be alive a couple of years hence, and will probably need another bit of brain removed within the year, you are grateful that they are going to keep a close watch on you. You are reassured that they threaten leap on you at the a sign that “Bob the Blob’ (pet name of my tumour) is returning. You gratefully sign up the three monthly scans once initial treatment is over. But, and here’s the moment of ingratitude, I am now two and a half years on and nothing has happened. No dramatic deterioration, no fits or faints, no new symptoms, no repeat surgery, nada! And scans every three months have been clear. Hooray!
But about now, (and I know I’m not alone) we ‘survivors’ begin to think : “Is this it?’
Of course, I am deliriously happy and grateful that I am well outliving my prognosis but I have to admit that am getting unreasonably greedy. I am no longer content to be a ‘lady in waiting.’ As long as I have to turn up every 3-4 months to be checked for recurrence, I will always have my faith tested. The system encourages you to be ever waiting for recurrence! I belive that I am a (rare) long-term survivor; I have faith in the treatment and strategies that have allowed me to attain this status (see rest of blog for details.) But as long as I am deemed to need close watching, that faith and belief will always be periodically tested, particularly in the period between the scan and the result. Scanxiety.
I have blogged about this before but the longer I go without problem the more I wonder what it will be like pitching up three or four times a year for scan… for ever! The GBM protocols don’t really allow for decreasing frequency of follow up because ‘nobody’ survives long enough. At the moment I am happy enough, although I find the journey tedious and the scan boring. But how will I feel another year from now, or five years, or ten? How will scanxiety manifest in that distant future?
For now, mustn’t grumble! How grateful I am to be alive to ponder this question but I would love to hear from anyone who is further down the line. (There are a surprising number) Does scanxiety persist? Does it change… to boredom/anger/irritation? Do they (the doctors) get bored with the waiting too? Do they ever give up on the scans and follow up? Do you get to feel neglected?
If I post this now, will I live to regret it on Wednesday (results day) when they inform me of dastardly plans to surgically remove my drivers licence along with a bit more brain! Noooo! It doesn’t bear thinking about!
So, posting this in hope of scanxiety being transferred from brain to blog.
Ahhh. That’s better.
I promise to post good news soon. Meanwhile, think of me and all who are in the grip of scanxiety, pray for sweet dreams for all.