The Fear: Post Cancer, the Past and Finding Answers in Harry Potter.

I’ve only recently added this up; In Australia, my home country, a dead mother in the year I turned 11. A dead father by 13. That weird epilepsy phase in London in my 20s that, before I was medicated, involved tonic clonic (“grand mal”) seizures in really awkward situations, like when crossing the road (I once launched myself into slow, oncoming traffic in Fulham, a car broke my fall) or whilst running to work in Knightsbridge,  (I landed head first on the pavement, you always land head first during a seizure, but on my chin this time, judging by the size of it afterwards, rupturing my ear drum in the process). A couple of miscarriages in my early 30s, and two births that probably would have killed me in medieval times. And now, with a breast cancer diagnosis in my early 40s, you’d be forgiven for thinking I’d be on the wrong side of natural selection were it not for the grace of modern medicine.

I was diagnosed in February with a 4.7cm Grade 1 invasive ductal carcinoma, lymph-node positive, and  like many in the post-treatment phase, sitting with the lows and trying to wrestle fear to the ground, the fear of incurable metastatic return in another part of my body. It’s proving to be a tad tough, shall we say.

The goal, the sweet spot to aim for, after cancer treatment, apparently,  is to live like you’ve had a massive wake up call and switch your mind off to the ‘what ifs’. This brush with death is often positioned as a gift. Fast-tracked enlightenment. A crash course in Buddhism with suffering built-in to the offer. 

The thing is, because of that other stuff on the list (y’know, ‘the past’), I’ve always had a keen sense of my own mortality. But I didn’t live in fear. In my 20s and 30s, I lived hard, fast and full, often choosing to do things that took me to the keen edge of fear. Bungy jumping. Crossing the Bay of Biscay, notorious for storms, in a small yacht. Hiking a section of the GR20, a high altitude walking trail in the Pyrenees, on my own and without a tent. (In truth, sleeping wild was partly because I couldn’t map-read well enough to find the mythical Shepherd’s Huts along the trail but that’s another story). I’ve always felt lucky to be alive.

I didn’t really know it at the time, but packing it all in like that was also a pretty handy avoidance strategy. The relentless pursuit of fun and happiness, no time or space to think or feel. Humans are hardwired to avoid pain and I made a shining example of one showing how it’s done. 

It wasn’t until my late 30s, happily married with two gorgeous children, living in the idyllic Cotswolds, surrounded by incredible friends that, in kind of oblique ways at first, I started to unravel. Always fine fine fine but with an intolerance to anything but, and always finding ways to rationalise dips, and always always able get myself out of them. I WAS HAPPY,  DAMMIT.  

What I couldn’t quite explain were those occasional ‘appearances’ from my parents in my consciousness – I’d find myself, on a Tuesday afternoon say, whilst putting away pants, suddenly blindsided by a memory from child-me,  seen through the mind’s eye of adult-me, now a mother, and I’d lose my breath. Bouts of the lows got closer together and went on for longer, in retrospect possibly a low-level, high-functioning, humming depression. Bouts of anxiety that I didn’t recognise as anxiety at the time, all the while feeling happy but never feeling enough, and all the while becoming increasingly detached, disappearing into myself as I tried to work it all out. 

At the time, It felt a bit like ambling into a gentle, mild-mannered, early mid life crisis and I tried to solve it in all the predictable ways. Work. Running. Volunteering. Yoga. Projects. Hobbies. Parties. Work. Parties. Eventually, when I got stuck, when I was doing all these things and didn’t have the answers any more, when there was nothing to do but hide in the study and cry, without any understanding of what I was crying about, my little girls, then so little, on the other side of the door, I sought out therapy. 

A random chat with someone at a party eventually got me to the right kind. She mentioned Psychodynamic therapy – a talking therapy where you look to the past to understand your present. A penny clanged loudly somewhere over there. Ah. Yes. That. The past. Maybe I should go there.

Fast forward to Breast Cancer. The most shocking thing about the diagnosis when it came wasn’t the cancer – it was that I felt I had predicted my own death. 

The diagnosis came at the tail end of a year of weekly therapy sessions where I had divulged something to my therapist, something I’d never told anyone and wasn’t sure I’d even actually thought it out loud before,  It was more of a feeling, a feeling that I might not have been able to find and grasp in my hands were it not for the ferreting around that comes with psychoanalysis, the kind of thing that you trip over, incidentally, as is often the way with therapy, the feeling that I was going to die young. 

Talking about it meant I was able to untangle the impact, chiefly, a growing detachment from my daughters and my husband – I was pulling away, protecting them, and me, from loving too deeply by way of preparation for my inevitable death. I had even, during really dark times, thought of leaving. It would be easier on everyone that way. 

It turns out that my experience, this feeling, is extremely common among adults who lost their parents as children, particularly as you approach the age they were when they died. My mother was 46 when she was switched off very suddenly by a subarachnoid brain haemorrhage. I was 41 when I started therapy. By degrees, I was able to to accept that this feeling was a function of my past. The invention of the grief-addled inner child, the same one that, before her mother died had wondered what it would be like if Mum died, had even played it out in her mind, and for many years after, lived with the feeling that she’d killed her mother by thinking it first. Shit. I don’t think I’ve even told my therapist that bit.

When it came to finding the not-a-lump in my breast (because it wasn’t a lump, but an ‘innocuous’ thickening of breast tissue, even my husband couldn’t feel the importance), there was a fair degree of wrestling with myself before I went to the GP. For a time, I convinced myself that what I was feeling was a physical manifestation of what was in my head. That wasn’t a 47mm tumour, it was paranoia. That already quietly invasive carcinoma was my dead mother. 

As the cancer reality unfolded, as the meetings progressed and the diagnosis became clearer, the idea that this was the beginning of the death I had apparently predicted, felt so absurd, absurdly cruel in fact,  that I readily dismissed it. Instead, it became a dark coincidence of such magnitude that it deserved to be laughed at. “I spent a year in therapy persuading myself I wasn’t going to die, then got diagnosed with cancer”.  Ha! Like, I mean, seriously? Apart from anything else, I was truly determined to live. My mind diverted its attention to treatment and survival, and I rode that wave with gusto and positivity, which is exactly how the world wants you to face cancer.

But there was a corresponding idea that came with my diagnosis, an idea that swam up in my own mind early on which I, again, kicked into the long grass, but one I could also see in the eyes of those who knew about my past and that traumatic first year of therapy, the year where it roared out.  It hung in the silence on the phone when I told them. That I had given myself cancer by being broken. Thirty years of deeply buried grief, had poured into my breast and made a tumour. This cancer was the ‘error of my feelings’. 

A cancer diagnosis outs the ‘truths’ people hold. Random cellular mutation isn’t enough. In the absence of a satisfactory explanation, humans feel compelled to fill in the gaps, particularly if you don’t look like a walking risk factor.  “Her cancer was caused by stress”, a friend said of her Aunt, and “cancer is caused by childhood trauma” said another, as I tried to hold my face still, wondering whether I should ask her to elaborate, very specifically, ideally with some science, on how my dead parents gave their future daughter cancer.  Tragic.

Now nearly seven months since diagnosis, first-phase of active treatment behind me, that early gusto and positivity that carried me through has evaporated and I am settling into that ‘new normal’ that is often spoken of, a new normal that accepts fear of a return as par for the course, a  normal where the ‘gift’ of that brush with death hangs heavy in the hand.

These are the things we all deal with. But we all also have our own personal narratives to untangle. How you deal with cancer, what it throws up in your mind, is bound up in what came before it. And the mind can be a terrible thing, especially at night. 

For me, it’s about rebuilding trust in myself whilst simultaneously fighting off the inevitability demons. When things are really bad, mine comes in the form of a near-comedy Grim Reaper telling me that this is written. My death was foretold. And if not, I made it happen by subconsciously feeling its possibility. But it’s the fear that grabs at you in daylight hours that’s in many ways, worse. Like the Dementors in Harry Potter, those dark hooded creatures that feed on human happiness, the fear drains you of joy and hope.

I know what needs to be done. I need to conjure my own version of the Patronus Charm to ward off the Dementors and re-write that narrative that gnaws at me in dark corners of daylight hours. Even if I die of this cancer, I refuse to let that be my story. I don’t have the answers as to how to do this yet (apparently the Patronus Charm is particularly hard to master), but I do know that it is daily work and that writing about it is part of it.

Occasionally standing in an empty field and roaring “FUUUUUCK OOOOOOOFF” at the top of my lungs is also very helpful.

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.