There Are No Words: Checking In

Day C+366 / Year C+1: 2016.07.29

Last night sleep was not easy. The tank ran dry around 9:00PM – very early for me. I was in bed before ten and asleep fairly quickly. Around 2AM I woke up to use the bathroom and found my brain in a tailspin. My guts were roiling with anxiety about the cancer coming back. I don’t have any particular reason to think that it has returned. Logic and reason don’t change the freaking out, however.

How I feel today.

There are many ways I deal with nighttime anxieties. A very effective approach for me is to try to stay awake, thinking through a specific and interesting problem. That was a no go: I couldn’t stay focussed. I briefly attempted some deep-breathing mindfulness, but dropped that approach when it immediately started to amp up my anxiety. I opened my podcast player and started listening to some shows, despite having no interest in any of them. I knew that a distraction would give my brain something to do other than boil in anxiety broth.

While the podcasts played I surveyed Audible for some SF/F that might take me away from all of this. I tried some of the books in my queue, but they were all non-fiction that drew my mind to the present and future, instead of away to another realm. After a while I settled on Armada, by Ernest Cline. He wrote Ready Player One, which I very much enjoyed, both for the content and for the dramatic reading by Wil Wheaton. Once the download started I settled in to listen.

It’s a good story.

I did drift off here and there, for up to 30 minutes at a time. I was never aware of falling asleep or waking, but there were a few moments when the story had a discontinuity and I had to rewind to the last part I remembered. Kathleen took out the dogs and came home and got ready for work. We talked a little about my difficult night. Around 7:30AM I fell asleep for a few longer stretches (about 90 minutes at one point). Never a deep sleep, but at least sleep.

At about 11:00AM, finally awake, my anxiety level was much lower. I continued to listen to the story as I got myself up and organized. I finally made it downstairs to have a coffee and “breakfast” with mom at 11:45AM. We talked a bit about why I had a rough night. I spent the last few hours sketching out home renovation ideas for my sister’s place, since I find that kind of drafting / design work deeply engaging and enjoyable. Whether she makes any use of my sketches or not, it meant I didn’t have to think about my feelings for a while longer.

Those feelings are still raw and fragile. A person I met through Facebook blogging sent me a thank you note today, talking about the positive effect my writing had on her and her mother as they dealt with yet another bout of cancer. I’m glad I can touch type because I can’t see the keyboard or screen through tears.

Day C+0 2015.07.29

I woke up in the wee hours on that Wednesday, too. Not with anxiety: desperately gasping for air. I didn’t go back to bed that night. Once I decided I needed to go to the hospital in the morning, I set out to prepare.

Over the next several hours I compiled a chronological view of my troubles going back two years, with all the relevant records and pictures. I also listed my current symptoms and difficulties, as well as past challenges in what I would call a functional view if I were writing a requirements document. My voice was so quiet at that point I knew I would have a lot of trouble with getting my crisis across to the people at the emergency room.

Then I got on the streetcar and then a bus, and was off to (what was then) Toronto East General Hospital (TEGH).

I don’t remember if I wrote about getting into the emergency room last year (I’m not reading ahead). The big lesson for me was that providing a written page of current and past symptoms, drugs, and other treatments was astonishingly useful. Every doctor and nurse read those notes. I annotated it over the day to add what had happened so far. I couldn’t answer questions verbally, so having this set of notes was enormously useful for the medical staff and for me.

Everyone should put together a list of symptoms, drugs, allergies and treatments, and add to it as your day goes on.

My calendar for July 29, 2015.

If there’s any lesson to be taken from all this, it’s that everyone should put together a list of symptoms, drugs, allergies and treatments. Do it before going in to the hospital if you can, or while you wait, but do it. Leave a bunch of whitespace so you can make notes as you wend your way through the system, and then actually take those notes. Add to it as your day goes on, especially doctors’ and nurses’ names and specialities; all drugs, tests, and treatments performed; any symptoms or conditions that change or that you remember as you go. I remember being surprised to realize that there were symptoms that I had completely forgotten to write down in my list until I was being asked about them by someone. Not little things either – big ones like having a wracking cough. Take your notes back even if someone is in the middle of reviewing the lists. Add it to the list as you think of it. Do not wait politely until they’re done. Many important recollections will flitter out of your head until it’s too late to be of use if you wait. If you have someone there with you, tell them. Ask that person to help you keep track and take notes.

Practical Advice

By the end of the day you should have seven lists that are all up to date:

1. Diagnosis (current and previous if the old one has been ruled out now)
2. Treatments (non-drug interventions that are done, proposed, or planned)
3. Medications (current and discontinued)
4. Allergies (and sensitivities, including drugs, antibiotics, latex, etc.)
5. Symptoms (current, previous, and pre-existing conditions)
6. Tests Performed (with results or when to expect them)
7. Medical Practitioners (general practitioner, specialists seen today, technicians, nurses, therapists, and so on)

Anybody out there like making templates and worksheets? This looks like it should be a worksheet that you can fill in on the computer, update by hand or on a tablet or laptop over the day, and print out to hand out.

I took to adding tests and and treatments to my calendar since I knew that way I’d have them in a place that I could find them easily and share them to family and others as relevant.

…Huh. I wasn’t expecting to have a rant on that subject today. I was expecting to be emotional and raw. Somehow that raw emotion is at once expected and surprising. I’m not sure how that even works, but there it is.