The wait for this scan has felt long. I was first scanned back in January when we were trying to work out the cause of my back pain. One nuclear bone scan done and several tumours on my spine found, I was rushed back in for several other scans to get the full picture of what was going on. The conclusion – tumours in my spine, lungs and liver. Stage 4 bile-duct cancer.
Those scans, along with the biopsy taken from one of liver tumours, were used to determine the next steps and my initial treatment plan – radiotherapy to the spine followed by eight rounds of immunotherapy, chemotherapy and bone strengthening drugs with two treatments in each round. We’ll scan you again after four rounds, they said. All seemed sensible. Twelve weeks won’t be that long.
I’d like to say rookie error on my part but since I’ve already got the 2022 chemo t-shirt, I should have known better. The 12 weeks moved at a snail’s pace. Chemotherapy started at the end of February so my scan was due in the middle of May, then another week to wait for the results.
It’s hard to explain the build up to a scan. It’s commonly referred to as scan-xiety in the cancer world. So much depends on the results of these scans. The wait can seem unbearable. But also, if it’s bad news, do I actually want to know? Wanting time to rush by to get the information but also terrified of what it might reveal. The scenarios play over and over in your mind. The build up, the scan-xiety, started about a month out for me. Life seemed on hold, I felt I couldn’t make any plans for anything until we knew what the results were. Everyone on tenterhooks waiting.
We decided not to tell many people the date of the scan or when I’d get the results. Most people had clocked it was around cycle 4 of chemo but I couldn’t face the pressure of feeling I had to share the news. I knew we’d need time to digest it before we were comfortable sharing it.
Scan day rolls around and it’s actually very anti-climatic. You’re scanned, but there’s no information shared at that point. The images have to be reviewed by a Radiologist, a report written and sent to your Oncologist and then the Oncologist review that report before you meet with them to discuss (in a 15 minute appointment slot!) So it’s not really scan-xiety, or in my case it isn’t, it’s results-xiety but that doesn’t roll off the tongue as easily!
5 days later, a couple of days before my scheduled meeting with the Oncologist, I got a call from the Doctor asking me to come in to hospital urgently as the scans had found a number of blood clots on my lungs. I needed to be started on blood thinners urgently. Oh right, I’m on my way. Thankfully I was told the clots are small, they are giving me no side effects, are common in cancer patients and are not considered too worrying at this stage. Although they did mention the risk of cardiac arrest, so it feels a little worrying! I’ve had a week of daily blood thinning injections and will now be on blood thinning tablets for at least the next 6 months. Here’s hoping the little buggers dissolve themselves ASAP.
Although that meeting came out of the blue, I was able to get a high level overview of my scan results. For me, that was hugely helpful. It meant I had two days to digest and prepare my questions for the meeting with my Oncologist. It feels so hard to think of hearing that information, digesting it and asking pertinent questions all in the space of 15 minutes!
So the results – no new tumours have appeared and none of my existing tumours have grown. The tumours on my spine have either stayed stable or where I had radiotherapy, have reduced. The tumours in my lungs have reduced slightly. The lymph nodes that were previously flagging as an area of concern have returned to normal. But the very large primary tumour and other tumours in my liver have not reduced in size, although are stable.
Ok, time to take that in and reflect. Whilst I was always hoping to blast the cancer in to oblivion, I was fairly realistic that this wasn’t going to happen. I also could feel in my body that the back pain was better but my abdomen hadn’t changed in feeling much since February. So not a huge surprise. But, having had 12 weeks of chemotherapy that has knocked the living daylights out of me, I don’t feel like I’ve got much bang for my buck. There are, of course, positives. No new tumours and no growth is good. But given this is likely to be the most aggressive treatment path I can be on, it doesn’t fill me full of hope for future treatments.
In the eyes of the medical profession, stability and small reductions are a ‘favourable response’. I think I’d mark it as a C minus. Satisfactory.
So we keep on keeping on. 4 more rounds of the same treatment and I’m scanned again after those. Right now, the plan after that is to continue with the immunotherapy and bone strengthening drugs, potentially alongside one of the chemotherapy drugs I’m already having (under discussion pending clinical trial reviews at the moment), but all will be reassessed after the next scan.
So what does this mean for my prognosis I ask? They honestly can’t tell me. Living with that uncertainty is hard. Scan to scan. 12 weeks periods.
For now, though, I feel I can make some plans. My realisation this month is that I need those plans. Something on the horizon to look forward to, to hope for, to aim for. Even if we have to change them or constantly add caveats to our RSVPs.
Holidays are being booked. And the thought of a break, some sunshine, family time, has been hugely cathartic. We’ve also got a bit of a handle on the side effects of the treatment meaning I can see patterns. Identify the days I can manage to function. And for those days, we also make plans. See people, do things. Live a little. May has certainly been a positive month for that. Spending time with the people I love and care about, that’s all that matters really. And for a few hours over the bank holiday, I forgot about everything. Who knew all I needed was a trip to the Safari Park!
On my impending death bed, I want to think about the life experiences I’ve had, the love I’ve shared, the friendships I’ve treasured, rather than everything that cancer has taken away from me.
