Progress Update for January 2019

Ah, January 2019; it’s a brave new world for the Cancer Dad blog. A new home on a dedicated site which, admittedly, still needs a bit of tidying up. But, still; it’s nice to have a place to call your own.

But, this is an update, so let’s update:

January 2019 started with a concerted effort towards diet and exercise, spurred on by the hope that my test results would come back favourably. Because, if this is the case, then it’s important to make the most of the year, by being in the best possible shape. Before I could get my results, however, I had to have my scans.

My scans were both on the 7th January, which was nice. I even had enough time between the scans to call in on the Endoscopy department to find out when my colonoscopy was going to be. Having explained my situation, that the scan had been due in October the previous year, one of the receptionists made time to help. I think she was able to do this because the desk was fully occupied. As I would find out later, they don’t usually do this.

She made a call and a date emerged. It was difficult to find a date because, written in my notes, is the stipulation that it’s my bowel surgeon who is to do the colonoscopy, and no one else. This becomes tricky because he doesn’t do many in a month. And so the date that was offered, February 13th, was no good because I’m off skiing less than a week later. It turns out that you can’t take a flight within two weeks of a polyp biopsy. And, given my history, a polyp biopsy was likely. The diary didn’t go into March, at that stage, so I was advised to try again in a couple of weeks, when the March dates became available.

In the intervening time, it was hurry up and wait. I had the usual level of mild anxiety in the week before the scans, but nothing I couldn’t handle. In the weeks between the scans and their results, this anxiety slowly built up to more debilitating levels. Like it always does. But I coped better this time than ever before. Which is to say, I didn’t break my diet… well, not too seriously. I certainly didn’t eat any of the usual sugar-laden crap I usually turn to, and that was a major result for me.

During this time, I went back to see my Doctor about my Thyroid levels, having spent eight weeks on 50 μg Levothyroxine a day. The visit was on the 15th, having had the blood test on the 11th. And the news was good. With the Levothyroxine, my Thyroid levels were exactly where they should be. He explained that I might not be on them forevermore, and a follow-up in six months time would help determine that. Not that I’d worry about having to take one little tablet each day…

And then the big day, arrived; the 23rd of January 2019: the day I’d find out what my future held.

But, an hour before the meeting, I had to have blood taken to check my levels. And in the ensuing wait, I went back to the Endoscopy department to chase up the Colonoscopy. This time there was only one person on the desk, so they didn’t have time to call on my behalf. I was, however, given the number, so I called them myself. To be told that I couldn’t arrange a colonoscopy, because the kidney function test I’d had in October was now out of date.

I was less than thrilled. I was told that I’d have to have another blood test and then wait for a call from them to arrange a new date. It was at this point that I pointed out that I actually already had bowel cancer and that I’d really like that colonoscopy please. This was before I got my scan results, remember, so I was a bit on edge. Anyway, it worked and I was penciled in for March 13th. This date would be confirmed after they got the results of the kidney function test. Which is now booked for Friday 31st.

And then, finally, to the meeting with the oncologist. She was running late, as can often happen. She has a Hell of a job; effectively ruining people’s lives on a daily basis. It must take its toll. It certainly takes its time, which is why I can never begrudge her running behind schedule. Anyway, my news was good; she didn’t ruin my day.

The scans were completely clear, meaning that I remain ‘Cancer Free’ for the time being.

We agreed to leave the next set of scans for six months. Only the second time in five years that I’ve got to the dizzy heights of a six month break. I was offered the opportunity to keep it at three months, but I’d prefer the rest. When the scans are three monthly, I spend one month feeling stressed and two feeling okay. It really breaks up my plans and my ability to focus on longer term projects. This way, I get five whole months without Scanxiety. Yes please!

Seeing as I’m getting close to the end of the ‘two to three years‘ that the oncologist had told me I could expect to live, back in 2016, I asked for an update on my life expectancy. She was having none of it and refused to be drawn. She wouldn’t even give me an estimated minimum expectation; how long I could reasonably expect if things took a dramatic turn for the worse. Apparently my case is not following the normal course of events, making any estimation on her part purely guesswork. She did, however, mention that she had a couple of other patients, who started off in my situation, who she’d been seeing for about 10 years.

So, medically speaking, I’m still very much on palliative care. I’m still a terminal patient. I’m five years into my treatment and she’s got patients who are 10 years in…

The way I figure it, I’ll assume that I have her original two to three year prognosis, on a rolling basis, unless I hear otherwise.

Who knows, some day I might even hear those magical words, ‘You’re in remission‘. But, I’m a long way from that. Four and a half years, to be precise. And I’m fully aware that I’m extremely unlikely to ever hear those words, but a guy can dream.

In the meantime, January 2019 was a good month, and it’s time to plan for the Summer…