OCAM - A waiting game – counting down to the next appointment

06 March 2016

Diagnosis initially triggered a whole series of appointments in quick succession and encounters with a host of healthcare professionals. Every appointment seemed to entail an overload of information that I struggled to process. Over the first few weeks it felt as if I was being hit over the head with more bad news as each appointment went by, topped off with the ordeal of having to relay the latest updates to others.

For at least six months, life seemed solely defined by appointment dates – the update from the last appointment and a countdown to the next appointment.  Even now each appointment comes with apprehension but also hope that it brings good news which I take as permission to keep doing what I’m doing.  Every time I see my oncologist, now every 6 weeks (every 3 weeks during my chemo), I find myself getting anxious in the run up. Much of the appointment is given to me updating my oncologist on how I’m feeling and how I managed with the last treatment. Usually the consultant has the results from my latest blood tests – the CA125 test and how I’m feeling is the only real indicator at present of what is happening and how I’m responding to the treatment. I’m well aware that in itself the CA125 test is not always an accurate indicator of what’s happening but in the absence of anything else it’s something to cling onto. 

My oncologist has always given me ample time to ask questions. I frequently go in to my appointments with questions written down in advance. It took me a year to ask “how advanced is it?” – I knew it was pretty advanced, but didn’t feel a particular grading was going to help me. I certainly haven’t asked the question which continues to play on my mind - “how long have I got?”, for one he won’t have a definitive answer and I’m not sure how it’ll help me. What I do focus on is the fact he said that for a (unspecified) proportion of people who have my condition and have chemo, it doesn’t bother them again – for me that’s all I need to know in order to remain positive.

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