When you’ve had cancer you get lots of ongoing medical attention in Australia. Your various specialists take turns seeing you on a three-monthly rotation.
I’m nearing the end of a three year cycle of seeing someone every three months. I know that a lot of people stop going long before the three years is up. Here’s some of the reasons:
- Cost; even with Medicare there’s a cost involved, typically somewhere around $60 but sometimes as much as $150 depending upon the specialist
- Anxiety; as each of these visits approach you’re drawn back into all those unpleasant memories and anxiety levels start to climb
- Avoidance; many people decide that they are happier not thinking about cancer and not being regularly reminded of it
- Purpose; many people question the purpose of a visit where a doctor essentially asks you how you’re feeling and, in some cases, doesn’t even examine you; even when an examination is included the doctor is much less likely than they are to find a lump
- Convenience; depending upon where you were treated there might be a considerable distance to travel for these appointments; this can be compounded by your doctor moving to a new location; even local appointments take up valuable time.
I suppose I’ve kept going because I’m one of those highly compliant people that keeps to rules, particularly when it comes to my health, but my most recent check up made me wonder. My original doctor had moved on and I was given the option of seeing the lead doctor at the oncology practice or driving for an hour or so to see my original doctor. I went with the lead doctor.
When I met him for the first time he explained to me that, in some sense, he had always been my doctor because this was his practice. Unnecessary. He asked me how I’d been feeling (fine) and then gave me a summary of my treatment that was incorrect. No, I didn’t have a mastectomy followed by radiation. It was clear that he hadn’t bothered to read my history before he saw me.
I took the opportunity to ask him the same question I’d ask my original radiation oncologist. Why didn’t the radiation treatment kill those remaining cells? He looked visibly uncomfortable and said something about ‘one in ten……’ and ‘best estimate of the correct dosage….’ and ‘not always effective…’. I politely suggested that perhaps this information should be available to patients before they agree to radiation treatment.
I think I was just annoyed that he hadn’t bothered to read my file.
The reality is that if I hadn’t had the radiation I would still have needed the mastectomy. Those random invasive cells had been there all along and while radiation is supposed to ‘mop up’ exactly this type of cell, in my case it didn’t. Apparently it doesn’t in about ten percent of all cases. But you can’t know going into treatment if you’re the one in ten!
If I hadn’t had radiation treatment I would always have wondered if it might have killed those cells and saved my breasts. At least this way I know that I did everything I could and lost them anyway.
I can understand why a lot of people give their three month checkups a miss.
Cancer treatment is a series of these difficult choices and I respect everyone’s right to make their own decisions about what works best for them. Some people rely upon the latest research or the science. Others go with their intuition and what just feels right.
Mostly I use the three monthly checkups to take some time out and reflect on how well I’m managing my health. There’s usually some opportunities for improvement. This time around, I decided that instead of a ‘to do’ list I would start describing things differently. I’m going to forget about a list that has undertones of harassment, and go with something more positive. Here’s my new method.
What are the elements of a joyful day?
- A hug and ‘I love you’ when I wake up
- Slow coffee in the sun
- A bit of Facebook time with friends
- At least five minutes of yoga (usually more)
- Some time in the garden
- Beautiful, nourishing food
- My chores done mindfully and cheerfully
- Cat cuddles
What are the elements of a joyful week?
- Lots of joyful days
- One TED talk to exercise my mind
- Creating something; art, cheese, a new garden…..
- One long walk, or bike ride or kayak paddle
- One deep and meaningful conversation
- Sex or intimacy
- One massage
- One great meal out
- Some time with Mum
- A long chat with my daughter (better yet, some time together)
- Lots of time in the garden
- One yoga class
- One coffee session with friends from yoga class
- One visit from a friend
- One blog post
- Two fast days
- One good book or movie
- The house clean from top to bottom
This is so much more useful than a ‘to do’ list because it keeps me focused on the things that really matter to me. I still use a note pad on the fridge to record things I can’t get around to straight away (the exhaust fan needs carbon filters and the latch on the door needs replacing) and we also have a family calendar for upcoming appointments and events. The other pad on the fridge is a shopping list; when something gets used up the person that used it up adds it to the list. These are all good, functional things, but it’s my joyful list that’s proving to be the most useful.
I find it easy to bog down in the day-to-day. Facebook can be a great way to stay in touch and it can also be a time vampire. Cleaning is endless and it can be very easy to be distracted by it. My ‘joyful’ list calls me back to the things that really matter to me; my health, my relationships with the people I love and the creative things that I like to do.
I’m nearly at the three-year mark since diagnosis. There are days when I forget I’ve ever had cancer. I just feel like myself again. And then I remember. It’s not a bad thing because cancer has certainly made me aware of how precious time is. Not just my time. Everyone’s time.
A list of what brings me joy helps me to spend my time where it matters most to me.