To be cured, or not to be cured.
I had questions. Dr D definitely told us myasthenia was curable. I did not mishear. I could not find a single other source in all of the world wide web that agreed. At least not a credible one.
It was starting to create friction in my marriage. On the few occasions I expressd anger, fear or resentment about having this disease, or at the progress it was making in disabling me so soon, my beloved resisted hearing me.
I tried to explain to him;
I don’t know why Dr D told us it’s curable. Apparently it’s not. If I’m lucky, I might be one of the few people with MG who’s disease goes into remission.
But your neurologist is the expert, husband said. Listen to your doctor.
The appointment for my CT scan came around. I was told it wasn’t as unpleasant as the MRI scan. I also needed another blood test, to check my TPMT enzyme levels. Apparently I could only start on the immunosuppressants if that test was OK. I hoped it was the last of the tests.
My appointment was in the evening. I knew our NHS was under pressure, I’d heard the criticism, most loudly coming from government. I was sure there were issues, many of them. But the clinics I attended seemed to be primarily in the evenings. My scan was booked for 6.15pm. Convenient for me as it meant my husband could drive me there. It also made it easier to find a parking spot. We spent 25 minutes looking for one the first time I saw the ophthalmologist!
But I was sure it wasn’t so great for the staff. I asked the radiographer who came to insert my cannula for the contrast dye to be injected into, what time the clinic closed. She told me 8pm. So not only did our Department of Health want these outpatient clinics to open 7 days a week, they were also operating outside of sociable hours.
I was called through and shown where to lie down so they could feed me to the machine.
The radiographer explained the drip she was hooking me up to would allow the contrast dye to be given to me rapidly. She said the most common side effect was a sudden sense that I’d wet myself. Apparently most people feel such a rush of warm wetness beneath their bums, they’re sure they have and are surprised to find afterwards that they haven’t at all.
I was more worried that I wouldn’t be able to keep still. If I got cramp in my feet or calf muscles I might flinch. I was getting muscle cramps more regularly now I was on the optimum dosage of mestinon, and cramp was one of the most common side effects. It would wake me during the night sometimes, fiercely twisting my toes and bending the arches of my feet. I was also trying not to imagine what the radiologist might see when looking at my thymus gland. Was it normal? Enlarged? Or worse, did I have a dreaded thymoma?
The radiographer told me they would let me know when to hold my breath, then they manoeuvred me inside the huge machine.
I lay still, trying to imagine a healthy thymus gland pictured on the monitors the radiology staff were watching.
I felt the sudden rush of warm wetness beneath my bum. I almost giggled, it really did feel as though I had just wet myself. I immediately hoped I hadn’t, and resisted the urge to slip my hand down and under me to check.
It was all over quickly and I felt the machine reversing me out of the tightly confined space inside the scanning machine. The kind radiographer came to unhook the drip and told me I could go back to the waiting room. I needed to wait a while before they removed the cannula. They had to be sure there wasn’t an adverse reaction to the contrast dye.
I was told my consultant would be sent my results within a few days. Dr D had said if I hadn’t heard from him about the CT scan within a week, I should contact his secretary.
At home I pondered and felt slightly ridiculous. I was no more or less likely to have a tumour just because I’d had the scan. But the fact of going to hospital yet again, being poked with more needles, inserted into another machine, and settling in to wait for more test results had taken something I wasn’t even particularly worried about and amplified it.
Even knowing that only around 10% of myasthenics had a thymoma didn’t decrease my uneasiness. I reassured myself by reading about how those 10%, well… hardly any of them had a malignant thymoma.
I had plenty to do to distract myself. Birthdays throughout the end of January and beginning of February. My own included. There were events that I needed to be at, representing my feminist group with our banner and leaflets. Another demo to stage. Some radio shows to present. I couldn’t stop, exhaustion could wait.
I wouldn’t stop.
Anyway, the steroids were giving me a frenetic energy, on the days I took them. Even practising meditation daily didn’t help me sleep thoroughly.
Back to waiting. Pretending I wasn’t preoccupied with the possibility of having a tumour. I was getting so adept at sounding upbeat when friends asked how I was, that some seemed quite surprised that I was waiting to find out if I had some alien growth in my chest. I mustn’t have seemed appropriately scared.
But I was. I really, truly was.
Spilling over with wonder, it’d been just over 10 weeks of symptoms, tests, results, medications, explanations, research and apprehension. I was full to the brim with the unknown and fear of it. It was making me feel sort of emotionless on the outside, at least about being ill. I had no capacity for any more right now. I was going through camomile tea and bubble bath bars fast, and didn’t know anymore if I was truly calm or simply detached from it all.
So I braced myself to wait for the, hopefully final, set of test results.