OK, here’s a bit to explain those mystery scans I had last week. A few of you have been in touch on instagram and email. I know I’ve been quiet on all this but I just didn’t want to create any unnecessary DRRAMMMA >Jazz hands< and I’ve been doing a fine old job of sticking my head in the sand on this one. In truth I realise it’s also because I’m scared, and when I’m scared I hole up. If I write here though, it kind of takes the edge off. Here’s the skinny, in the form of conversations with Oncy.
February: The Diagnosis Meeting: With the Breast Surgeon “Surge”. (Once we’d gone through all necessaries of first stage treatment i.e surgery)
Me: So, when do I have a scan then.
Surge: You don’t need to have a scan
Me: But… how do we know it isn’t anywhere else..?
Surg: You don’t have any symptoms.
Me: But I didn’t really have any symptoms of the breast cancer
Surge: You had a lump.
Me: Yes but.. It wasn’t very obvious.. What if it’s somewhere else.
Surge: Then you will have symptoms…
June: The No-Chemo-Straight-to-Hormone-Therapy Meeting with Medical Oncy, the badass one (Once she’d explained everything to do with long-term hormone treatment)
Tom: So how do we monitor things going forward?
Oncy: Well, I will see Siobhann in a few months to see how she’s tolerating the hormone drugs
Tom: No I mean, to see if the treatment’s working. Scans or blood tests…
Me: Babes, there are no scans. We just live in mortal fear of a return and then if silent cancer gets big enough, we’ll know about it in symptoms and then it’s incurable (ironic game face grin)
Oncy: Yes. Pretty much.
September: The Post-Radiotherapy Meeting with the Clinical Oncologist(Once she’d examined my radiotherapy site. Ie. boobs, babes. Also… after long conversation involving me bursting into tears and blubbing over my extreme lows-and-lows, pouring out my worries in liquid form about hormone therapy ruining my ‘cancer free’ physical life and ‘can I keep running?’ because if I run, won’t it grind the bits between my joints to a pulp and will my bones break mid triathalon? What is this unholy life-saving hell anyway? Things like that.)
Me: I’m worried it’s quietly spreading. I lay awake at night convinced I am going to die. Every niggle in my shoulder or my back. By day, it’s better, but I am worried. I know the Letrozole can cause bone pain but still. The anxiety is awful. I think just a base line scan to know that everything is OK would help.
Oncy: Are you usually an anxious person…?
Me: Thinking, Fuck.. she’s watched Suits for sure. Well… I mean… a bit I guess.. But I manage it pretty well….
Oncy: The thing is, if there’s no reason to think you do need a scan, then it’s likely a scan will create more anxiety. They do that. Scanxiety is a very real thing. Also, data shows that monitoring scans of those with early cancer do not actually improve survival rates. It might catch the cancer a month or two sooner, but the outcome would be the same…
Me:… because if a growth is big enough to be found on scan, then it’s big enough to give you symptoms..?
Her: Exactly. It’s also not good to expose you to unnecessary radiation. However, I am prepared to discuss this with the team to give you one scan.
Me: Actually, don’t worry about it. You’ve really reassured me. I really don’t need the extra anxiety. So, I can take on some kind of big physical challenge like a Tri or a big long run?
Oncy: Yes, you can. I am actively encouraging you to.
Me: Can I have a hug please?
Oncy. Yes you can. And you’re doing great.
Me, some time later, triumphant, at home: “Babes, I told her I didn’t want the scan after all!”
It was stupid really. I didn’t really talk to her much about the back pain. I thought it was just my muscles. It’s probably just my muscles. I think I wanted to prove that I wasn’t just an anxiety-addled mess.
OCTOBER: After much thought.
I cave. I go back and request a scan via email. I explain that I’ve been to the physio a couple of times, and I do know some it’s muscular and to do with my tight fascia, but other pain has entered the fray. Is it my spine? My ribs at the back? Honestly, I could almost just think myself a new cancer at this rate. I just don’t know my arse from my elbow anymore.
I’ve had the scans now. A bone MRI and a CT scan of my torso (TORSO TORSO TORSO) and am awaiting results. Where’s my head with it? Honestly, I don’t know. There are days when, in the real pit of my stomach, I feel that it’s fine. That it’s nothing. I am trying to listen to that voice. I am generally going about my business thinking that it’s nothing because that’s a much easier thought to think. And then I remember that I thought that about my boob, and that turned out to be a big something. And I question the pit of my stomach.
My radar is well and truly shot to pieces. The only way of knowing for shizzle is to get those results.
Why am I only telling you all this now, after all this time? Because, if it’s nothing, then at least, if you’re a friend without cancer, I guess you get that window in. If you have cancer, you will no doubt be nodding along and thinking, “I hear you babes”. If it’s nothing, and the scan results come in, I can tell you, and it will make sense because you’ll have the back story and we can celebrate with GIFs on instragram. Hurrah! I Am Not Incurable! Boom emoji. Party emoji. High Five emoji.
And if it is something, then you will know that that my ‘new normal’ just dramatically imploded, that we’re dealing with a whole new-level bucket of shite, and that I might need you. Again.