I haven’t written for a while, mostly because I haven’t known what to write. I’m in a kind of frustrating wait zone at the moment, half-way between an ‘all-clear’ and ‘more treatment’. But I had a phone call from my endocrinologist today, so that has sparked me to write something.
You will recall I was preparing for radioiodine treatment last time I wrote, so I’ll start there and follow it with some other observations.
Radioiodine
I had two preparatory injections of Thyrogen on the two days prior to the iodine treatment, and they seemed to go fine. It was just a trip to my GP’s office each morning at 9am. I had some nausea on the Wednesday afternoon, but one of the hospital’s doctors later told me in no uncertain terms that thyrogen does not cause nausea. There were no issues on Thursday.
Friday morning, the day of the treatment, I was very unwell with nausea. I ate a little, but was sick in the car on the trip to Royal North Shore. Good thing we had a bucket! At this stage, I was very worried they wouldn’t actually give me the treatment that day.
The doctor was concerned about me being sick, but not overly worried. I was admitted and waited in my hospital room until about 3pm with no further issue, so the tablet arrived. It was in a lead container in a steel box on a tray, and accompanied by a few nuclear medicine doctors. They gave me instructions to swallow it immediately and then pulled back the lid and stepped outside of the room while I did so. Once the tablet (scarily marked with the little radioactivity symbol) was swallowed, they left me alone. I stayed in the room for three days, with nurses visiting occasionally for only a few minutes to check my blood pressure.
I had no real issues over the course of the weekend and caught up with some uni work and watched a lot of movies.
On Monday, I went for a scan which showed the iodine had good uptake in my thyroid bed and nearby areas and hadn’t metastasised. This is very good news. However, beyond that, I haven’t had any more tests or scans and I don’t know anything else.
I was later discharged with various instructions on how to make sure no-one was unnecessarily exposed to radiation.
I am returning to Royal North Shore in late August for another scan which will indicate how well the radioiodine has done its job, and indicate whether I am effectively cured or whether more treatment is needed. It seems such a long time to wait when these are the stakes.
Cancer Fraud
Part of my frustration of recent weeks is a really weird feeling that I haven’t had as many issues as people with cancer, and so I can’t let myself feel that it really could be over, despite my logical brain knowing it might be.
When I was told I have an aggressive and rare cancer, I expected a long hard fight. Of course, I hoped it would be easy. I hoped I would be able to deal with it quickly. Nobody wants to have the pain and ill-health that goes with many types of cancer and their associated treatments. But I was also trying to be realistic about what it could mean for me and for my health, and the indications were that it could be difficult. Instead, my operation went smoothly, and my recovery too. I had very few side-effects of the radioiodine. I am fitter now than I have been in years. Indeed, one of the most common comments I’ve had is “You look well.” And I do.
Don’t get me wrong, there have been some truly horrible moments. I’ve had unwavering tiredness, fogginess, some pain, breathing difficulties and general emotional stress, but it just hasn’t been as bad as it might have been. That’s a good thing of course, but it hasn’t helped me shake the feeling that there still ought to be something worse around the corner.
Phone Call from the Doc
One of the other frustrations I’ve had, and I’ve mentioned this previously, is that I’ve felt like there just haven’t been enough tests. I’ve always just wanted to rule things in or out. I hate not knowing. Today, the endocrinologist phoned to confirm that there was no “distant metastasis”, but that the iodine uptake in my neck had been higher than might’ve been expected (which means there is more thyroid tissue than there might’ve been). As a result, she would like me to have a CT scan before I return to Royal North Shore for follow up and another iodine scan. So this at least gives me another milestone, and some reassurance that nothing will be missed. August could still be the end of it, and I hope it is. I’ve never really seen eye-to-eye with any of the churches, but I am praying for some good news.