A few weeks ago I had a chat with a friend of mine who, like me, was diagnosed with cancer shortly after having a baby. Like me, she’s also had to change her career and basically reinvent herself post-diagnosis. She was considering whether she should get a “normal” (i.e. full-time) job and then mused, “But I don’t have a normal life. How can I have a normal job?”.
This got me thinking about my life. I’ve tried so hard to create a new kind of normal since I’ve finished my treatments but like my friend, my ‘new normal’ probably doesn’t seem normal to a lot of other people – those lucky folks out there who don’t have any health problems. I’ve also started wondering if, nearly five years after my diagnosis, I should be looking for a full-time job. I often work full-time hours but this is pieced together with various types of work at various times of the day, some of which pay well and some of which, well, don’t really pay at all.
As a kind of challenge, I’ve decided to keep a note of the amount of time I spend attending health-related appointments and see how it stacks up over a year. Just how much time do I actually spend on managing me? I have a feeling it’s loads – and most certainly all of those appointments fall during the middle of the day making a traditional full-time job difficult. But maybe my perception is off. Maybe it’s not really as much time as it feels like it is and if I can document it I can figure out a way that having a ‘normal’ job would be possible (if I decide I want one!).
That brings me to yesterday which was Appointment Number 1 of 2015. The hospital I attend usually takes an hour to get to on public transport although yesterday it only took me 50 minutes. Unfortunately, my 10 minutes of earliness was totally wiped out by the fact that I had to wait 35 minutes to see a nurse and then another 35 minutes to see the doctor – I eventually got in to see the Big Man an hour and ten minutes after my appointment was scheduled. After travelling home again, a total of three and a half hours had been taken out of my day for an appointment that actually wasn’t very useful. For a reason no one appears to understand, this appointment – originally scheduled for July – was brought forward to January. This meant that the scan I should have had before the appointment hadn’t even been scheduled so now I’ve got to have the scan and then go back for another appointment to get the results. Three and a half hours well spent? I’m not so sure.
My final reflection on the appointment is this: I know I have a complicated-looking Welsh name. Really, I do. But surely if you mangle my name and then bother to say “I know I haven’t said that correctly” you might then ask how it’s pronounced? The lovely and amazing Kate Granger is heading a #Hellomynameis campaign to get NHS staff to introduce themselves to patients. The second half of that should be #Andwhatsyourname? Macmillan Cancer Support have a value-based standard which includes behaviours that staff can adopt to ensure they’re treating patients with dignity and respect. One of the first behaviours listed is “Staff ensure that patients are asked how they want to be addressed”. Mangling my name and then acting like it doesn’t matter doesn’t get us off to the right start, particularly when I’m already stressed about being in the hospital. Complicated name or not, sometimes it’s the little things that count.