So mid-August saw my next scan. The scan-xiety wasn’t too bad, this time. It was still there, but didn’t take over my life like it had previously. I think my expectations had lowered after the June results and so I wasn’t holding out huge amounts of hope this time. This time I was aiming for stability rather than longing for reduction. Don’t get me wrong, we always hope it’s been obliterated but that wasn’t going to happen after the last scan. So we crossed fingers and toes for stability but accepted this may not happen.
The 12 weeks rolled around. It would be a lie to say they passed quickly. Eight more rounds of chemo, four bone-strengthening infusions, ongoing immunotherapy, and the daily blood thinners to try and thwart those pesky blood clots – plus the usual cocktail of daily pills. It all adds up. Six months of treatment has taken its toll, and by the last round I felt physically and emotionally battered.
You learn a lot as a cancer patient. You start to understand medical terms you’ve heard banded around for years but never needed to fully comprehend. You also learn the importance of advocating for yourself – sometimes asking, sometimes insisting – on what you need. The Doctors are brilliant, the Nurses incredible, but no one is fighting your corner like you are. No one wants you to live more than you do. And so this time round, I’d pushed to have three different scans – a CT scan, an MRI scan and a PET CT scan. I’d not had this combination of scans done before, not had them done at the same time, and never had a PET CT scan. I wanted the full picture. I wanted to be able to compare like for like at each 12 week cycle. I needed the information. How can I make informed decisions without it?
A PET CT scan aims to show the levels of activity within individual tumours and is done by injecting me with a small dose of radioactive glucose. This glucose is then absorbed across the body, with cancer cells taking on more than healthy cells and therefore showing up more brightly on the images. The aim was that this combination of scans would give us a full picture across my organs, soft tissue and bones and also show us how active each of the tumours is. A new baseline to work from.
Fortunately, all the scans were booked for the same day. The downside? Seven hours in hospital, the PET CT scan taking a couple of hours as they have to wait for the glucose to be absorbed in to the body before scanning you. Although my scanxiety was considerably lower this time, it’s still an emotionally draining day. And the nuclear element of the scan means I can’t see Charlotte afterwards as I would risk exposing her to unnecessary radiation. So I hid in my bedroom when she came home and missed my bedtime cuddles.
And then there’s the wait for results. Scan results are not given on the day – the images need to be reviewed by a Radiologist who writes a report and sends this to your Oncologist who reviews before your meeting. So I had the usual week long wait. It’s hard not to let your mind wander in that time. To read too much in to every word said during the scan. To become paranoid about why you were kept waiting after the scan longer than others who had come in after you. The brain instantly assuming it’s because everyone is looking at your scans to marvel at how horrific your cancer spread is.
Anyway, results day beckoned and I, again, had a 15 minute appointment with the Professor to learn my fate. It still blows my mind that potentially life changing information is given in such a short time.
The opening words – ‘it’s generally positive news’. My mind immediately raced. Positive – but why only ‘generally’? What was the catch? But as the Professor went through everything, both David and I could only see it as positive news. Maybe the less positive is I still have stage 4 cancer, and that in itself is a pretty shitty situation! But it felt the most positive meeting we’ve had in this journey so far. Not a huge achievement given every meeting so far has been worse that we even imagined it could be!
We learned that there are no new tumours, no further spread. The tumours in my bones are showing a response to treatment and although there are several tumours in my lungs, these are all small and there has been some fractional reduction. In my liver, we had previously understood there to be one very large tumour with others too, however these scans show this to be a large area of my liver which has multiple tumours in, rather than one tumour. In June, these had been shown to be stable but the latest scan shows this area has reduced by approximately 20%, with one tumour having reduced by over 50%.
There was a big sigh of relief. So what next? We’d discussed this before and so I had some idea but it was all dependent on the results of some clinical trials that had been finishing up. The Prof confirming that I’ll continue with the immunotherapy and bone strengthening drugs, dropping the chemotherapy. I could have cried (I very nearly did). The thought of a break from chemo actually giving more relief than the scan results themselves. The thought that I might feel well over the next three months, a seismic change. No more throwing up. No more steroids and their horrible side effects. Those 11 hour sessions on hold, for now. Like I said, I could have cried.
The other good news is that the molecular profiling on my tumour has finally been completed and one particular mutation has been identified. This means that when the immunotherapy stops working, I will be able to start a targeted therapy. A treatment line available only to those with this mutation and gives me another option, hopefully buying me more time.
I’ll be scanned again in 12 weeks and the process will happen again. If the immunotherapy is working, then we’ll continue with it. Keeping going until it stops working.
Another positive has been the improvement in my back pain. The combination of stretching, strengthening exercises, acupuncture and supplements has helped hugely. The pain is still there but it’s nothing like it was. I can move, walk, get dressed. Another huge relief. Unfortunately, though, the 16th dose of chemotherapy was one too many and I’ve developed tinnitus. We’re not sure if it will be permanent or not, but so far it’s not letting up.
In the short term, the next 12 weeks provides me some respite. The focus now is on enjoying a couple of holidays. As I type, I’m sat in the French countryside. An idyllic week of family time. There’s Charlotte to settle in to ‘big’ school and time for a couple of projects (more to come on this in a few weeks). Maybe even some healthier eating and exercise. A group therapy course (nervous!), more writing.
Right now, our world feels a little lighter (the big, wide, actual world, not so much). The 12 weekly cycle continues and, whilst I’m terrified of what not having chemo could mean for the cancer, the relief of not having it is overwhelming that fear for now.
So here’s to September and October. To making more memories. To seeing my girl start school. And for the first time, allowing myself to think that I might still be kicking around at Christmas.
