Anxiety After My Recurrences of Bowel Cancer

After I’d been given the all clear from my first brush with cancer, I fell into depression. I didn’t have time to feel much of anything between my first and second recurrences. Following my second recurrence, on the other hand, especially after the operation to reverse my stoma, I had all the thinking time in the World. It very quickly turned out that anxiety after my recurrences was just as possible as depression after my first time around.

In much the same way as it had with my depression in 2015, the anxiety after my recurrences started with the announcement that I was cancer free. Another large similarity between 2017 and 2015, was that I had no faith in this ‘cancer free’ announcement.

This time around, in particular, my lack of faith was for very good reason. Not because I was on palliative care; although I was. Not because I’d been told that I probably had two to three years to live, more than a year ago; although I had. No, my doubts stemmed from the type of chemotherapy I’d been given. FOLFIRI and Irinotecan are designed to debulk tumours, not kill them. I’d had at least three tumours before I’d started the chemotherapy. That meant that I still had at least three tumours hidden away, somewhere in my body. They were just too small to be ‘seen’ by the scans. Cancer free. Pah!

This isn’t to say that I’d given up. Not at all. I mean, there was some small, outside chance that the chemotherapy had been so effective that it’d destroyed all of my remaining tumours. But that was very unlikely. My hopes rested on the principle that, when the tumours returned they could be surgically removed. Then, and only then, would I actually consider that I had a chance of being cancer free. This, too, was not very probable, but at least it was something I could work with.

I was given this latest all clear on Wednesday 19th April 2017. At the same time, I was also given the news that my next scan would be in three months time. And, as I was given the date of that appointment, the anxiety after my recurrences kicked in.

And it was more an anxiety than out and out depression. It was largely the feeling of constantly being on edge, than the feeling of being down. Although it was, occasionally, a very short trip from the former to the latter.

In the background of my mind, there was always the following knowledge whirling around:

• I was on palliative care
• I wasn’t expected to live past Summer 2019
• The tumours were going to come back
• I had scans again in three months

I was just about able to keep a cap on all this. It meant I was edgy a lot of the time but I had it mostly under control. Unless something else happened…

Anything that introduced any additional stress or anxiety into my life, and the background level of anxiety after my recurrences burst forth and took over. A manifestation of this was the post I made on Facebook on 1st June:

“About a week ago, the Black Dog dropped by for a visit and has been hanging around since. I’ve been wondering why and I think I’ve just worked it out.
I feel tense every time I log on here in case there’s yet another political propaganda post.
Then, when there inevitably is; I feel stressed because I feel I ought to address the inaccuracies and at the same time know it’s pointless to do so.

I thought about coming off Facebook until the election is over but know that, following the result, there will be days, if not weeks, of condescending vitriol along the lines of: “If only people were intelligent enough to read the right papers, then they’d’ve voted the right way…”
As I don’t want to come off Facebook but do want to shift the Black Dog, I have decided to unfollow anyone posting political propaganda. Life’s too short for unnecessary stress.”

So there it was: the simple annoyance of people making political posts, without fact-checking them first, was enough to tip me into depression. That was how pervasive the background level of the anxiety after my recurrences was.

Other than that, during May, I’d been doing okay. I’d increased my exercise in an attempt to keep my weight under control. I’d enjoyed some good weight loss in the run up to the reversal surgery, however the recovery, and inactivity since, and brought a lot of it back. My body, though, was struggling with the increase in intensity of the exercise I was doing. I’d started jogging and my knees were very sore. The plan was to power through and my joints would fall in line. To help this, I wasn’t actively dieting, as recovery seems to be much slower on reduced calories. The result of this was that, while my fitness and muscle tone was increasing, so was my weight.

I did make one important breakthrough in May, though; I realised that the reversal surgery marked the end of the beginning of my illness. This, of course, has been recognised in my blog posts, with the move from Coping with Cancer, to Living with Cancer; of which this post forms a part. But, at the time, this was an important recognition for me, and it was my first baby step to moving forward.

Sure, there were setbacks, like bouts of depression; when I became overwhelmed by my anxiety after my recurrences. But, overall, I was able to take this revelation and, slowly and surely, force my way towards a better mindset.

At the end of June, I walked up Pen y Fan, a large hill in South Wales and one of my favorite places in the World. A year previously, I’d thought I’d never get back there again. I’ve been back up again quite a few times in this last year. 

Around the same time, I wrote my first meaningful blog post.

We also went on a family cruise to the Baltic Sea, during which I took extensive notes for travel blog posts. Additionally, I was baking a weekly cheesecake for cooking blog posts. But this all came to nothing, as my enthusiasm sort of… fizzled out. This fizzling process happened in the build up to my next set of scans. No matter how good my mindset, scans always seem to be a massive obstacle.

I got the results on 23rd August and they were still clear. Amazing! Better still, I was told that the next scans would be a full six months later, because things were going so well. Fantastic. And I felt… nothing!

Part of the problem was I was experiencing ongoing discomfort at the site of my reversal. Despite the fact that I’d only just had a set of scans, by the end of September I was feeling sure that the tumours were back in my colon. There were legitimate reasons for this:

• I was feeling discomfort in the same place as the original tumours
• My bowel habits were increasingly disrupted
• I hadn’t had a colonoscopy since the original one in 2014
• In the past, I’d had tumours that had developed really quickly

On the other hand:

• I’d just had a scan in August
• I’d spent two weeks of September cycling 600 miles, and the length of France, with my Dad
• My eating was all over the place
• The site of the original tumours was also the point that the bowel was reconnected, so there was a ring of scar tissue there. Of course this would cause a sense of obstruction until the swelling completely died down

By this stage, however, the anxiety after my recurrences had moved into depression territory again, and I was back at my therapist seeking her assistance.

Fortunately, help was on it’s way, from the most unlikely of sources: I got the date of my follow-up colonoscopy. As crazy as it seems, the knowledge that I was booked in for a colonoscopy (in October) really helped me keep moving forwards. At least I’d know, for sure, what my situation was.

The colonoscopy, itself, was a much easier process this time, because I opted for sedation instead of gas and air. With the sedation, I genuinely didn’t care what was happening to me. Except for the bit where the doctor found a polyp… It was extremely hard to gather enough focus to discuss what was going on, but that’s sedation for you. He told me that it was a polyp but it looked okay and that he’d taken a biopsy to confirm. That was good enough for me, so I stopped focusing and my mind floated away again. So much better than the first time around.

I actually have my next colonoscopy coming up… if they ever get back to me with a date! And I’ll certainly be having the sedation this time round as well. No point being a hero when it comes to colonoscopies…

But back to October 2017. The wait for the polyp biopsy result was the last of the dark times. The result of the biopsy was clear. I remained cancer free.

I also, finally, had some things to focus on; to give my life structure. The hockey season had started again, which, as it always does, introduces a weekly routine of training and playing. From this, I was able to hang other things. Julie produced a huge list of tasks that needed doing around the house, so I did one of those each day. Ceri decided she wanted to sign up for Ten Tors, so we started training for that. Christmas was coming up, and we would be hosting, so I started planning and implementing the baking. Which reminds me: I really must bake the Christmas cake…!

All of these aspects of my routine, as trivial as they might sound, were far more effective that talking to my therapist, so I stopped seeing her. And I’m sure some people are asking why I didn’t simply go back on antidepressants. And I did toy with the idea, but Citalopram clouds my thinking and I’d had enough of that. I still hadn’t fully emerged from the fog of chemo brain, more than a year after my chemotherapy ended. I know other antidepressants may not have interfered with my thinking, but I wasn’t willing to risk it. Being able to think clearly again was just too important to me.

And, by the time we’d got through Christmas, I’d actually turned a corner and started planning for the future. We’d booked our skiing trip and were planning on a split driving/villa holiday in California in the Summer. By this stage, it had been four months since my last scan; what a difference that extra month made. Basically, this was the longest time I’d gone without something cancer related happening to me, since Spring 2014. Well, except the colonoscopy… Oh, and a meeting I had with the oncologist… But work with me here! The point is: I was feeling less anxiety.

At the end of the year, I made the following post on Facebook:

“2017 has turned out to be an excellent year for me, health wise. Whether it turns out to be an oasis, or the shape of things to come, it’s been a whole year cancer free and I’ll be forever grateful for that.”

I was in a much better place.

Not that the anxiety after my recurrences had gone, it was just that I’d had time to get it under a bit more control.

And, even as I sit here typing this, I can confirm that the anxiety after recurrences is still with me. In fact, I’m feeling it more strongly than usual, at the moment. A combination of challenges at work combined with my inexplicable decision to agree to captain the newly formed Sixth team at the hockey club, have got me on edge. To be honest, I don’t see it going anywhere soon. After all, my next scan is on January 7th…

But I think that’s my reality now. I’m always going to feel anxiety after my recurrences. I think everyone would. I think that this is inevitable and, largely, unavoidable. I’ve no doubt that, given enough consecutive clean scans, the anxiety will fade with time.

In the meantime, though, I have found that by acknowledging and accepting the anxiety after my recurrences, I am better able to control it. By having a structure and routine in my life, I am more able to fill my mind with other thoughts, thus lessening the hold of the anxiety. It’s a fine balance, though; too many things to think about, or the wrong type of things to think about, and the anxiety takes over.

But still, even though I have this high background level of anxiety after my recurrences, I know how to deal with it now. I accept that there are going to be setbacks but that doesn’t stop me moving forward. Because it is manageable.