Conversations with Oncy

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. 

Tom: ….

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. 

We hug. 

Me, some time later, triumphant, at home: “Babes, I told her I didn’t want the scan after all!”

Tom: WHAT?!

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.

Eek emoji.


HOW’S YOUR FUZZ?

No really, how IS your fuzz people? You got loose fuzz or you got tight fuzz? Tight fuzz ‘aint so good. I know it sounds like it should be good but it isn’t. Turns out you need loose fuzz. You wanna be able to, in theory at least, run a finger through that fuzz and for it to just sliiiiiide on through nice and easy. Here’s the deal;

So, what the fuzz is the fuzz? The fuzz is part of your fascia which is a membranous layer of connective tissue under your skin that envelopes your organs and muscles so that things can kinda’ slide off each other, not get all stuck together. Best thing is to watch this awesome awesome video below (literally, in my top 10 all time of youtube videos. Up there with Laughing Baby, Sneezing Baby Panda and anything that comes up under ‘bot fly removal’) but before I do, I will answer the question I can hear you asking right now – WHY THE FUZZ ARE TELLING US THIS SHIV?

Well, after really struggling with what I thought was a MAHOOSIVE knot in my right shoulder, which lead to pain creeping down my back and then eventually up to my neck (and me at night, every night, thinking, it’s metastatic cancer in my booooooones), I went to the physio. Turns out my fascia got stuck and this is really common with people who’ve had breast surgery.

In fact, if you’ve had any kind of surgery, or have had a period where you’re less mobile, where you are not moving in the same way you usually do, where you might be holding yourself differently to unconsciously protect an area, you can get fuzz build up and tight fascia.

So yes, I got the fuzz build up, I got the tight fascia. And it all links to that mastectomy diep-flap reconstruction surgery I had back in March, and the radiotherapy I had in July. I have been pretty active throughout – I even had a deep tissue massive four weeks post surgery – and started back on very gentle running and yoga six weeks post surgery – and I STILL got the fuzz.

And let me tell you this. Getting your tight fascia sorted is it’s own level of really not fun. There I was, trotting off to the physio fully expecting a a bit of delicious elbow action right there in the bit, you know the bit, the oh-yes-right-there-bit, eyes rolled back as you disappear into that tiny crack between agony and ecstasy, but no. It’s like having a chinese burn on your back and you will spend the entire time mentally ferreting around trying to find the pain-pleasure crack, and come up disappointed.

So, my lovelies, watch this video and go forth and conquer the fuzz, every day. Biiiiiig stretches now. And hold this gem of a human in your mind when you do so. He’s just ace. Oh, and, a first for me – inadvertently getting ‘cadaver’ into two blog posts in seven days. Boom.

Laters,

Sx

I love sciencey-people. I love this man. I’m now following him on Facebook. Yes really.

ChooChoo Cancer Train: Next Stop CHEMO

OK, so last week I basically shat my pants because I found out I was going to have hard-core chemo which makes me lose my hair. But then I cried, raged, watched Episode 5 of Fleabag S2 over and over in the dark in the downstairs loo on my own, wrote about it, put fresh pants on, and now I’m over it.

That, I hasten to add, all happened in about 48 hours. The appt with Oncy (sounds cute doesn’t she?) was on Friday. By Monday I was on instagram wearing a blue wig and image searching comedy interim chemo cuts. The cancer train moves at a terrifying pace and there ‘aint much time to wallow –  I’ve got a hair plan in place, and am now looking ahead at the practicals. Like doing school holidays with two young kids. And Chemo.

She’ll be right, as they say in the home-country.

Back to the practicals. Look – I’m actually publishing helpful details for my friends and family instead of unleashing all my inner most feelings on the public!

Chemotherapy runs in cycles. I am doing six cycles, three weeks apart.

CYCLE 1: 18th May

CYCLE 2: 8th June

CYCLE 3. 29th June

CYCLE 4. 22nd July

CYCLE 5. 12th August

CYCLE 6. 2nd September.

Poison goes in on the first day of the cycle, body shits itself, body flushes poison, then just at the point you’re starting to feel better, more poison goes in. Oh the joys! But it’s blitzing the cancer so we must remember – it’s GOOD poison. Like the best damn Vodka Martini you ever tasted,  (but at the point when you realise that the first one might well have ‘taken the edge off’, but the 6th probably isn’t ‘medicinal’ anymore and you can already feel tomorrow’s HORRIFIC hangover setting in).

I don’t really know how my body will respond but modern chemo is a lot better than it used to be and there are loads of meds now to counteract the horrors. Feeling sick? They’ve got a pill for that! Uncontrollable diarrhoea? They’ve got a pill for that! Nails falling off? Oh, soz, just gotta suck that one up actually.

The reality for most with cancer, and me going forward, is that life goes on with chemotherapy.

Hubby will take some time off around the bits we anticipate to be the worst. We will get away for the odd weekend. People will rally. Ahead is a slow, gentle summer living life, doing cancer on the side, and me sharing every revolting detail of my chemo’d inner machinations on instragram.

Stay tuned people. There will be photos.