It’s exhausting being sick. Not the actual feeling ill part, but the whirlwind of checkups, appointments and referrals that surround it.
You have a main doctor that has an overarching view of your care and treatment, in this case my oncologist, and then there are the other specialists who do their part. At its peak last year, I had my main oncologist, a radiation oncologist, gynaecological oncologist, GP, breast surgeon, plastic surgeon, genetic counsellor, IVF specialist, lymphoedema physio and exercise physiologist.
And they were just the ones I had to see regularly. I’ve lost count of the one-off appointments, blood tests, X-rays and bandage changes that I also had to fit in.
It drains you, physically, mentally and financially. I was reminded of it this week when I had to schedule a GP referral, blood test and ultrasound before attending a specialist appointment next week. Fitting it all in during a working week took a bit of juggling and made me thankful I have a flexible working arrangement.
Going from doctor to specialist, blood test to X-ray, appointment to appointment is a full time job. It’s a whirlwind of phone calls, confirmation texts and those little cards clogging up your wallet, reminding you of the next appointment.
Those cards are notoriously easy to lose and when you add in a case of chemo brain, a forgetfulness akin to baby brain, you have no chance of remembering where you need to be.I found the easiest way to keep track of it all was writing it down in a proper, old-fashioned diary. A small pocket one which fit easily in my handbag and displayed seven days over two pages I could easily see how much I had on every week.
The first week I opened that diary to see no appointments, I cried. It was such a relief. I didn’t realise how big the weight of having to be somewhere every day, at a certain time, regardless of how I felt, was until I didn’t have to do it anymore.
So much about cancer treatment is automatic. You just keep going because you have to. It’s not as if you can skip a scheduled radiation treatment because you really don’t feel like getting off the couch that morning.
Radiation was a big one, every day Monday to Friday for six weeks. Luckily it was always around the same time every morning so I could plan my day around it, but by week four the fatigue was kicking in and it would take me longer and longer to walk the four blocks to the hospital. Yes walk. I know that compared to others I was fortunate to be able to walk to the hospital and most of my appointments rather than have to drive and worry about parking or take public transport, but it was still exhausting.
When I finished radiation in March, I was thrilled that I no longer had a daily medical commitment. At the end of the six weeks, I met with my radiation oncologist I asked her when I had to see her again, thinking it would be annually at least. She told me I didn’t. She’d done her part, I responded well to treatment and fingers crossed we never had to see each other again. I whooped. Loudly. Then I felt bad, apologising that it wasn’t because I didn’t like her, but it felt good to cross a doctor off my list. She laughed, she got it.
Now, my medical list has shortened significantly. I see my main oncologist every three months and my gynaecological oncologist, breast surgeon and plastic surgeon annually. I know that it’s a long way off, and that cancer is treated rather than cured, but eventually I hope to step off the merry-go-round completely.