I survived a benign and aggressive sarcoma. I had a Desmoid tumour (and a LOT of muscle) surgically removed in October 2018, and whilst I didn’t require further treatment, my medical team continued to monitor me until November 2021. “I can do nothing more for you,” my surgeon said that day. “If you are ever worried, get in touch and I’ll gladly see you.” And so I walked away, very much hoping that I wouldn’t have to put his promise to the test…
It was all going pretty well…
It takes a while to trust your body again. I’d got some of the way there via therapy and the passage of time. Lifting weights helped – working on my literal strength to prove that my body could still build itself up, and that I had some degree of control. And even though there was also the continuation of a pandemic, I’d got myself back to other normal things: foreign holidays; days and nights out; dating (having also been through two painful breakups and the healing involved in that drama).
Life post-cancer is different in so many ways. There’s the awareness that it can happen to you, and the fear of it coming back, plus more besides. I don’t know that it’ll ever go away, but I also hadn’t realised how soundly asleep that fear was until it stirred.
Then I found a lump…
It began as it had the first time. Prior to diagnosis, I’d been at the gym when I noticed a lump. This time, I was at work, and I felt something in my abdomen, where I’ve got a large piece of mesh which was once muscle. And I brushed it off.
Because weirdness post-surgery or treatment isn’t unusual. Your body has been altered, for good reason. So you don’t have the same clues as previously. Often you’re more asymmetrical than before, meaning that you can’t accurately compare with the opposite side of your body. Or, like me, tissue has been removed, so you can’t quite tell what’s your body and what isn’t. Either way, it’s not the first time since surgery that I’ve felt something wasn’t quite right and decided to talk myself down rather than raise the alarm. It was a valid choice.
Until three nights later, when I felt it again. This time, I explored more thoroughly. Examined my body to establish via feel what might be going on. I asked myself a series of questions, like a doctor would, running through how I was otherwise feeling, whether there were any other symptoms I was experiencing, where the lump was and what it felt like, establishing whether it hurt. This time, I couldn’t stay calm.
I had a cry. Sent messages to two people who I knew would fully appreciate what was going on and not brush it off. Then I formed a plan. Because obviously I’d put myself through this torture on a Friday evening, with my birthday taking place two days later.
A weekend of waiting followed
There was nothing I could do until Monday morning. Other than try to enjoy my weekend, which I did, ably assisted by friends and family. When Monday finally rolled around, I called the hospital, to find I’d misinterpreted the instructions I’d previously received, and would have to seek a referral from my GP. Which led to more tears.
I do my best to avoid the GP, as I find the practice I’m registered with unfriendly, and I was concerned at how long it would take to get an appointment. I took a deep breath, and called the surgery, sliding the magic word of “Marsden” into the conversation I had with the receptionist who, as a result, kindly arranged a phone appointment for me later that afternoon. I felt like I’d made a little progress.
Getting a GP referral
When my GP eventually rang at shortly after 6pm, I described what was happening. I used language I knew she’d relate to. I spoke about having examined myself, and the physical discomfort I was experiencing, and I requested a referral to my surgeon.
She was in a rush, and seemed flustered (understandable at the end of the day), but did take me seriously. I’d received instructions having spoken to the member of staff at the hospital earlier, so was able to tell her that the referral needed to be made electronically, and had a number she could call if necessary. She began filling in the referral whilst we were talking, so that I could give my input. As we were about to hang up, it occurred to her to ask about the size of the lump.
“Is it like a seed, perhaps, or a grape?” she asked.
“Oh no, it’s more like an egg,” I told her.
“An egg?!” she actually shrieked, seeming shocked.
And with that, and the promise that she’d have a PA complete the referral the following morning, the call ended.
How things have changed
When I was originally going through this process in 2018, the NHS was still firmly wedded to fax machines, and patients had to wait for a letter or phone call. Well, most did: once I knew where I’d been referred to, I called daily to check whether my referral had been received and when I’d likely be invited to the outpatients clinic. To the point where I pestered my way into an appointment.
This time, there was no such need: via one of the NHS apps which I have hooked up to my GP record, I was able to see that the referral was indeed sent the following day, and I continued waiting. Until my phone rang the next day. A member of staff told me that my consultant would like to see me the following week, at which point I felt both relieved and terrified. I was to again make the familiar, early morning journey to the outpatient department. I knew I’d been booked in early in case it was decided that a scan was necessary, and my brain went into overdrive thinking about dressing appropriately.
The next few days passed in a surreal blur
I was definitely experiencing more physical discomfort. I avoided focusing on any core muscles whilst at the gym, but still went, even though the session the day before my appointment was particularly lacking in enjoyment – I was too worried. Previously, I’ve prepared a list of questions prior to every hospital appointment, and it felt weird not to have anything beyond, “Have I got a tumour?”.
I’d been through so many emotions: I’m not the kind of person who likes to think positively – I prefer to prepare myself for the worst, awful as that in itself is, rather than hope for the best. But there was one option for my dream scenario of my doctor saying, “you’re fine, go away”. I knew that if that was the case, I needed to feel better-prepared to make that assessment myself. I’d already learned from this experience that I didn’t really know how to perform a self-check and that, due to my anatomy being so different, even most doctors wouldn’t be able to do one either. So I decided to have my surgeon walk me through that, should we get to it.
The journey began by train
As it always had. I knew I’d arrive early, partly because it’s who I am, and partly due to timetables. But I was really early, and didn’t want to risk eating or drinking in case I did need a scan. So I took on a friend’s suggestion and walked for a bit to try and clear my head and settle my body. Once I felt able to, I followed my feet to the hospital, checked in at the reception desk, and started my final wait.
When a member of staff called me over and politely asked how I was as she steered me to a consulting room, I gave the stock, “fine, thanks” and couldn’t think of when I’d last told such a significant lie. I was anything but fine.
I was left alone, and took a deep breath before a door opened, revealing my consultant, who greeted me with a smile. He settled next to me and asked how I was. “Great, until almost two weeks ago,” I said. We both knew I was desperate for him to examine me – not in a weird way, honest – and I knew that he was aware of what I’d communicated already via my GP.
So I lay down on the bed, pulled my top up, and pointed in the direction of what I could feel, describing it at the same time. He concentrated on everything I said, then began to feel my abdomen himself. I watched his face carefully for any clues. He asked me to show him again where I could feel something unusual, and the best way to achieve what we wanted was to pretty much hold hands and perform a weird dual exam.
After much consideration, he informed me that all felt as he would expect it to feel, and I exhaled loudly. I was instantly apologetic for wasting a valuable appointment, and he reassured me that there was no need to apologise. He took the time to show me around my body.
“I reviewed your theatre notes to remind myself what I did,” he explained. “And I think there are two reasons you can feel this – firstly, I had to attach the mesh to your rib. Secondly, remember that I removed a lot of tissue.”
He worked his way across my abdomen: “This is your bottom rib, where the mesh is. Now feel the other side – you’ll have to press harder, because there’s more tissue and no mesh, so it’s more hidden, but you can feel it.” And then I understood. “And this is your floating rib,” he continued. “Again, you can feel it on the other side to compare, but you’ll have to press really hard again.” And he was right.
The aftermath
“So I’m happy that all is well,” he summarised, allowing me to take a breath before asking how I was otherwise. I gave him the short version, not wanting to take up any more of his time, then I left. I headed to the nearest toilet for a quick cry, and to message the people who knew where I was and were waiting for news (don’t judge me, we’ve all used our phones in a bathroom).
And it took some days for emotions surrounding the experience to settle. As they have, I’ve learned some important lessons, which I’ll share here next week.