Maybe my most neurotic post, You are warned.
You know, one of the hardest things about having cancer was the admin.
There were so many appointments. In-person. Zoom. By email. Surveys. Online check-ins. Appointments to be made, appointments to be changed. Waiting for referral appointments to happen. With radiation, constantly checking the schedule to see if something had moved, and if it had making sure it worked and then rescheduling it or fixing whatever else was on the calendar that caused a conflict. The phone calls to get support. The intake sessions. The follow-up. The schedule of event commitments. I don’t know how many times I would say, I need a secretary! It’s a big job for anyone, but when you’re feeling sick and full of fog and fatigue, it’s overwhelming, There were often weeks with three appointments, sometimes a day with more than one – each carefully orchestrated – by me – not to clash and allow enough time to get from one to the other. It was a bit like booking connecting flights. Four hospitals were involved. They were all in the same Toronto ‘hospital corridor’ but far enough apart to cause more fatigue. There was even one appointment on each of Christmas week and New Year’s week. Last week I had no appointments. It was glorious. This week there are three again, followed by a quiet stretch until early February.
On the other hand, I’m expecting a call to get a mammogram. This has been one of the most confusing things ever. Over the course of seven months, I have had three separate dates given me for the mammogram and five separate doctors’ names attached to those dates. Every time I tried to ask what is going on, the story would change. Yesterday I was determined to sort it out. I asked if I could type out my dilemma in an email. I carefully explained all the different stories I’d been given and then asked if someone could please tell me what was the correct one. Today someone called me with all the answers. Such a relief. Yet I’m the one with brain fog or chemo brain, as they call it.
You really do have to stay on top of things no matter how dizzy, tired, sore, aching, or confused you feel. My last day of immunotherapy was such a day. On that day I was to see the oncologist. He was away and a resident (?) saw me instead. I had been asking for some time when my last session would be and had had no answer. By my reckoning today was the day. I asked the resident, is today my last session? He looked at me and said, no, your immunotherapy is for two years. Another year? My heart sank but I was prepared to accept it. He left the room. Krish and I looked at each other. Two years? OK and what now? Was I to leave now? We waited a few minutes and no one showed up. I wandered out to see if anyone knew what was happening. Eventually, I saw someone with a badge and asked if I needed to stay. They went away and came back with Tess, the oncology nurse. She wanted to weigh me. I had emailed her to see if I could get a blood test if this was my last session and she’d agreed to book it. The nursing station staff had told me it wasn’t booked. I asked her again, am I getting a blood test? Yes, she said. Back at the treatment pod I mentioned it again. They nodded. It didn’t happen and I was done with asking. Nobody acknowledged I had finished. This was my last day. No one asked me if I wanted to ring the celebration bell. I sighed and decided to leave. My follow-up appointment slip showed a March follow-up with the doctor with bloodwork, and a May mammogram. It made no sense, but I was so happy to leave. The whole thing felt anticlimactic, but it was done. D. O. N. E. I was out of there.
No celebration and no will to push for it either.
What happens next? I’m not sure. A mammogram is coming up. Any other scans, I don’t know. Something to talk to the oncologist about. I also haven’t been scheduled a final heart imaging test. After months of Herceptin and radiology, both heart-damaging treatments, I hope I can get a clear picture of where things stand right now.
And I have two confessions. No, three.
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- I had to put off my cataract surgery and have only just got another referral to start the process. I’m scared. I feel like my body has been invaded enough. I’ve had too much scary recovery time. And the surgery may be two, one for each eye. I know my vision is poor. I must do it. My appointment is on 3rd March.
- I was scared when my eyes got bad and wondered if my cancer had spread to my brain. I asked for a CT Scan and got an appointment. When they called me to set the date, I deferred it to ‘I’ll call you.’ As soon as they’d asked if I was allergic to the contrast dye, my mind went NO, I can’t do this. Enough scanxiety. Now I know I have to reconsider. I have a nevus in one eye, and the optometrist had to mention the word ‘melanoma’ when they were scanning. I know I’ve had this forever but it’s got a heftier weight now. Can I do it?
- My anaemia and diarrhoea (both common side effects of chemotherapy) do need some investigation. I went to see a GI specialist and we talked about a colonoscopy. Even though he didn’t think it urgent, I worry that I need to get this done. Again, more body invasion worries are holding me back, and I hope there’s nothing going on that I should have hurried up on.
I do have a plan, though — to discuss it all (the longer list) with my GP in a few weeks and see if I can prioritise it all. It really is a longer list than I’m sharing here. I’m sticking to the peripheral cancer worries and, believe me, that’s enough. I’ve never claimed to not have health anxiety!
Where are you, secretary?
Maybe I need an ambassador!
I went back to Princess Margaret on Tuesday. Krish had an appointment at Women’s College Hospital, and I used Wheeltrans to get us over there. I visited the Rehab and Survivorship department, where my Lymphoedema specialist, Niki, had made me a “pressure pad” which helps drain fluid from my breast. My last one was wearing out, and how kind of her to just present me with another. I looked down from the second floor into the lobby and noticed some white objects down there so went to look. They were some of the Butterflies for Hope fundraising butterflies, each >representing hope, transformation, and remembrance for those affected by cancer.
I went next door to Mount Sinai to get a prescription and explained to them that I needed different tops for my medication containers. My treatment has made my nails fragile, and they were tearing as I opened the tops I had now. They replaced the top on the new container and gave me others so I could change the ones at home.
Then I went upstairs to the Cancer Care Clinic. My heart was in my mouth a bit. There weren’t many people in the waiting room, but I looked at everyone and imagined how they were feeling and what was happening for them. A receptionist printed out my next visit reminders – I’d lost them – March 5 for bloodwork, something called ONC CHEMO CARE (added to the confusion list), and follow-up with Dr Watson. I popped around to the exam room area and visited the fridge for a snack. There were people sitting there, masked and expectant. I thought about the year behind me and how familiar everything looked, moving on without me for all the people who were to follow. This is how life is.