Chemo has been cancelled. WTAF?!

In the weirdest turn of events since events got weird, three days before having my PICC line put in and four days before starting chemo, having gone through the long arc of disbelief, rage and acceptance on having chemo INCLUDING CUTTING MY HAIR (yes, we can laugh, Honestly. This IS the cancer comedy after all) I’ve just been told I’m not having chemo (laughs maniacally).

“What the actual fuck?!” you metaphorically scream with your metaphorical head in your metaphorical, or perhaps even actual, hands ( I know you’re doing it , because that’s what I did). The short answer is it’s to do with the Clinical Trial I hadn’t bothered to mention, stuff I’d spared you all because… well, it’s detail you didn’t need to know, and we, including my cancer team, thought it all pointed in one big chemical direction. So here’s the long-ish answer

Cancer Maths.

Cancer treatment involves quite a bit of cancer maths. With primary breast cancer, treatment involves dealing with what’s IN YOU at that given moment, and then you’re looking at reducing the risk of of localised recurrence or metastases (secondaries). The data looks at 10-15 year return rates. Cancer maths at the medical end of the spectrum focuses on probability garnered from clinical trials and studies. It’s all data driven.

Cancer Blind Spots

I’ve mentioned that there are different grades of breast cancer but also cancers with different receptors which can determine treatment. For example, for a hormone receptive cancer, a cancer that grows with hormones, the treatment is hormone therapy. For high grade, fast growing tumours, chemo is really effective because it’s brilliant at hitting cells that sub-divide quickly. My particular type of Breast Cancer (low grade, hormone positive, HER2 negative) tends to get treated with hormone therapy AS WELL as  chemo, just for a belts and braces approach and in the absence of more more information about the genetic make up of the cancer and what it might do. Blind spots. That means, lots of women go through chemo even though it might not have a direct impact on reducing long term recurrence. Yah. Painful. Traumatic. Also, expensive.

The Future.

A t the cutting edge of diagnostics however, is personalised diagnostics and treatment based on the genetic make up of the particular tumour. Many diagnostic tools are already in place and the one that currently isn’t widely available on the NHS is Prosigna . This tool provides highly accurate and personalised predictions based on the genetic make up of the tumour.

A few weeks ago, I consented to have my data used in the Optima Trial which is gathering data to predict who might benefit from chemo. It was a randomised, double blind trial with 77% of people going straight to chemo and the rest being tested with Prosigna . The Prosigna tool tests the tumours, categorizes them further based on the gene assay. The tool helps determine who would most benefit from Chemo, based on robust data. Some of those tested would be referred for chemotherapy. Those who they predict wouldn’t benefit based on the analysis, would go to straight to hormone therapy.

Back to me..

It turns out I was randomised into the Prosigna arm of the trial and, upon further testing, it was decided that my best treatment plan involved going straight to hormone therapy. Meaning, chemotherapy was highly unlikely to have any benefit on the long term prevention of recurrance.

For me, having chemo is like using a blind bazooka to kill a really mean fuckin’ ant. And missing because the ant is under a rock somewhere over there, meanwhile obliterating everything in its wake, all the while hoping some shrapnel might hit said ant. In my case, long term hormone therapy, along with a good blast of targeted radiotherapy, is much more likely to prevent a recurrence.

Now, way back when, this exact outcome was determined to be extremely unlikely. Vanishingly remote. Even if I was randomised into Optima, there were characteristics of my cancer (chunky tumour, node positive, extra-capsular) that led the team to believe that I’d go straight to chemotherapy and that this was the best thing to do for me regardless. To de-risk the situation as much as possible. And so the course was set for chemo. Letters were received, a chemo schedule put in place. Holidays were cancelled. Hair was cut. I published several blogs to help me come to grips with it all. We cried, we processed, we dealt, we accepted. We braced ourselves. 

And so, here we are…

Needless to say, we are overjoyed but what I will also say is that we are kind of emotionally fried. I am writing this on the day we had the meeting with Oncy so the feelings are fresh and vibrating. We’ve been through the whole, “is it an admin error?”. Tom says it feels like we’ve just had a stay of execution.

Suddenly, our daughters don’t need to experience their mother going through chemo. I don’t have to watch my daughters and my husband watch me going through chemo. In one fell swoop, it’s all different.

I for one feel an overwhelming desire to stare at a blank wall until it sinks in. 


I’ve Got Cancer, And Every Reason To Be Glad.

I’ve been wanging on about the Breast surgery for a while –  it’s time to talk about the cancer bit of my Breast Cancer.

This week, my surgeon confirmed that a bit of cancer was found in one of the sentinel lymph nodes that was removed at the time of my mastectomy surgery. I was told that I’ll definitely have radiotherapy, and chemotherapy is highly likely. I left that meeting on cloud nine. Despite the fact that my cancer has spread from its original home in the duct, to my breast tissue (making it ‘invasive’), and thence to a lymph node,  I am still at the ‘curable’ end of the scale. It’s all relative you see. I’m not just looking on the bright side here – there’s no forced positivity when you come out of an appointment and know your life isn’t hanging by a thread.

I had “the cancer fear” much like anyone else. But once you’ve GOT the cancer, the fear scale shifts. All cancer is bad. But there’s bad cancer, and there’s really fucking bad cancer and all the bits in between really matter.

It’s grotesquely over simplified, probably highly offensive, and almost certainly inaccurate, but this is how I understood how to position my own cancer before going into the meeting.



At each point of not-knowing, early on in the process of diagnosis, when I  knew I had “something’ but I didn’t know what the something was yet in wait of the tumour biopsy results, and then again waiting for lymph node biopsies,  I had moments where I mentally placed myself up and down this scale, dialling the fear-factor up and down accordingly. On the left, (American accent) “I can do this. I am going to nail this fucking fucker”. To the right, “Oh fuck. I’m fucked.  Completely and utterly fucked” (definitely a British accent. Probably northern). Squaring up to face death. Most of this happened in my mind , and only fleetingly. I was trying not to think, you see, dealing only with the information in front of me, but the thinking was happening without me even thinking I was thinking it. Damn brain.

Following my last meeting with the surgeon, as of Wednesday the 3rd of April 2019, in spite of this early spread, I am still firmly down at the left hand side of that shitty cancer spectrum.  I have a fairly common cancer, a treatable one, and It’s only been found in one lymph node and that’s now out. The working assumption is that surgery has nailed it, and radio and maybe chemo, plus further hormone treatment,  will do their magic to blitz anything else sinister lurking about and prevent a recurrence (with the understanding that treatment does not come with guarantees). It may not seem like it, but this IS cause for celebration. So many people aren’t this lucky at this moment. Some people, with very few symptoms, get terminal off the bat.

And there’s more.  The gladness comes from something much bigger than “shit but treatable”. My friend Emma pointed me in the direction of an article by George Monbiot, columnist for the guardian, who last year wrote about his prostate cancer.

In his own reflections on being grateful for his diagnosis, Monbiot goes wider in his assessment and creates his own scale – The Shitstorm scale. The Shitstorm Scale doesn’t just consider what might have been had the cancer not been caught early, but also any number of other tragedies and life disasters. It also considers within it other life circumstances to assess his position on the scale, and by his own calculation he’s a 2/10 as opposed to a 7/10, the latter being where he’d be placed on the Prostate cancer scale. Now that’s positivity for you.

My wider circumstances aren’t dissimilar to his; I have the NHS. I have a roof over my head. The love of a bloody good husband. My daughters. Family, here and abroad. A network of people – an extended ‘family’ of friends, neighbours, even acquaintances who hold us aloft, champion us, send us good vibe texts, hug emojis and playlists, and leave Shepherd’s Pie on the doorstep. And a rocking therapist. Helps.

Like George, when I look at my cancer for what it is, and in the context of a Big Life around it, I am one of the lucky ones.

Monbiot also writes about not letting fear rule your life


“There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Don’t Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.”

George Monbiot

Making ‘cancer chat’ a daily reality through social media and this blog has helped me enormously.  It’s important we all talk about it. Not in hushed tones. Not with pity. Not with fear-faces. But just for what it is. Something that needs to be faced, my new reality, for the time being at least, and yours in part as someone who might know me. Bring it into the light and trust me when I say there is a hell of a lot to be glad about right now, and a bloody good life to be lived as I move through treatment. So let’s just crack on shall we?

{With thanks to George too, for unwittingly helping me to crack the title of this post. I totally remixed you Monbiot}

CROWD SURFING THE LOVE WAVE: A SHORT MESSAGE OF THANKS

I am in hospital as I type, recovering from my mastectomy-reconstruction surgery, hooked up like you wouldn’t believe. Three drains. A catheter. A cannula for my morphine (YEAH BABY – given myself a little hit this moment, just because I can. Shimmy shimmy). It sounds scarier than it is, but of one thing I am certain – I rode into hospital on a love wave and all this has been made bearable because of it.

Thank you to everyone for every little thing. I haven’t cried much because of the cancer. An occasional hiccup. A brief burst. Try as I might, I can’t get those tears out (>milks eyes<).  But I have often been brought to my knees by the kindness of you lovely people. Left gasping.

I sleep knowing that Tom and the girls are being carried by our community, near and far. Cards. Meals. Lifts. Playdates. Dog walks. Letters. Hugs. Talks and walks. I have poetry. Playlists. Grazia. Werther’s Originals. Oils. Balms. Eye Masks (genius). But most of all, amazing words;  this is when digital comes into its own (it would totally suck to be diseased in the ’70s). Instagram comments and messages, whatsapp, texts. Messenger. It’s not always easy keeping up with it all but, even if we don’t reply, know this – we inhale them. We drink them in and gulp them down. I don’t understand how it works, but it’s like magic. Osmotic. It lifts us up, and I speak for Tom and the girls here, because they feel it too.

To you all, heartfelt thanks for the love wave. It carries us.

And that’s not the morphine talking.

I give you… my SHIIIT SAAANNDWICH. (Now please check your boobs).

{This is an edit of the email I sent to friends and family to let them know about my Breast Cancer diagnosis in March 2019. I didn’t have email addresses for everyone and this felt like the simplest way to get the message out}

Subject: Shit sarnies and tits.

Dear lovely people in our lives

We could say I am writing with some shit news, but in truth it’s shitty news with lots of good bits, and, most importantly, with lots to learn from it which is partly why I am emailing you. I’m writing this as if I were having a conversation with you, because that would be ideal, but time seems to be running away from me, so an email will have to do for now at least. I really wish I had more time and headspace to do this differently. Please know that you’re all in my mind as I write.

A few weeks ago, I was diagnosed with breast cancer. Hold your horses, everything’s going to be fine. I have a ‘diagnostically good’ tumour, which means, without going into all the details, it’s treatable.  I am actually happy to talk about said details, but that’s not really why I am writing, so I’ll come back to specifics in a bit.

I’m writing for two reasons. Of course, there’s something big going on in our lives and I can’t move through life pretending otherwise. I think you’d like to know.  I want you to know. And, importantly, how it’s going to impact our lives over the coming weeks and months. It will explain, for some of you, why I’ve been a bit ‘iffy’ on the friendship front these last few weeks, or just plain daft on life’s details.

In truth, it’s also because, you know what? I think we need our friends right now. Distractions. Jokes. The odd text. Life affirming loveliness as we crack on with life and  treatment and nail this fucker, which we will.

Secondly, and this is really a big driver, because this all came as a massive shock and I hope my experience will encourage you to touch yourself up in quite a major way, monthly, nay twice monthly, hence forth. Properly. For shizzle, because what I found was not really a conventional lump by any stretch, and what I found was already an invasive ductal cancer (that is, it started in the milk duct, then quietly spread to the breast tissue) that had managed to grow, largely unnoticed, to a not insignificant 4+ cms, right under my nose, even though I was ACTIVELY CHECKING and have small breasts which should apparently make it easier to notice. It scares me to think about where we’d be if I’d left it longer (best not to peak around those doors, my new mantra is to stay firmly in the present), and I’ve been preoccupied with the idea that there are people like me walking through life, perfectly healthy, perhaps with a horrible thing. I want to call every single one of my friends, neighbours, relatives, shout from the roof tops and say, “check your boobs, check your wife’s boobs, check your neighbours’ boobs, CHECK!! But maybe ask your mother in law first!”.

I don’t really meet the risk criteria for breast cancer. I am under 45. In 2018 I ran two half marathons, did a shed load of running and downward dogs in between, maintained a healthy weight, had a pretty cracking diet, and a shit-tonne of lovely therapy leading to plummeting anxiety levels and lower stress. I’ve always prided myself on my rock-solid immune system, built in the dust of Western Australia,  rarely succumbing even to even the humble cold. We’d even embarked on a whole ‘kill midweek wine o’clock’ agenda with nearly 4.5 months off alcohol over the course of the year and lots of moderation in between. I was eating FERMENTED FOODS PEOPLE.

This is not an excuse to blow my own trumpet, but to say, I really thought that all the good things I was doing would somehow protect me from the bad stuff, in spite of all the binge drinking and fagging in the past.

And here’s another thing. I feel absolutely fantastic. I felt no pain. No tiredness. Post diagnosis, I’ve been on really long runs (head clearing wonderfulness) so this deadly thing inside me has had no noticeable impact so far.

Silent.

The point of all this is to say, stay vigilant my lovely women friends. Tune in to your body and understand it’s peculiarities. Know your boobs. Go to the GP with the slightest niggle. Challenge them if they send you away. Women under 50 in the UK don’t get an annual mammogram but increasingly women under 50 are being diagnosed which suggests we ARE at risk. Perhaps I am an anomaly. But anomalies are still humans. Either me, you, your friend, your wife.

RIGHT, let me tell you about lefty and what I noticed because this will help. And also, of the people I’ve managed to tell, there’s a pattern. “What?! HOW?! WHEN?!”, so I’ll talk you through it, as if you were right here with a cup of tea, the way it ought to be.

Influenced by great charities like CoppaFeel, and perhaps because of the early deaths of my parents, and that slight mid-life-crisey feeling which set in around 40 and drove ‘healthy Shiv’, I was actively checking my breasts and have been doing so for some time. I checked in a few ways.. I sort of did ‘piano fingers’ across them, I pressed down, or I dragged my open palm down and up each side, pressing in to feel for a lump. I felt around the nipples and in my arm pits. If I did piano fingers, both sides felt the same.. And then I started to notice two things.

First, I had noticed a small dent in my left breast. I had read that a change in shape was something to watch out for and I kept an eye on it. It just didn’t seem enough to go in for. And I had also started to wonder about a slight thickening of tissue on the left hand side of my left breast. No clearly defined lump. And it was different at different times of the month. I wasn’t worried because it felt largely like the other side. There’d be months where I’d say, “oh, no, it’s gone, it’s fine now, that was hormonal’. I’d come to learn that differences between breasts were normal, but I’d also learned that sometimes that’s the easiest way to spot an abnormality and to watch for bigger changes. I am not sure how long I was keeping an eye on things for.. But I got to the point where there was a noticeable difference between lefty and righty.  That slight thickening on the left under side felt a lot more like a ridge if I raised my arm over my head when I checked, and for me, that really was the clincher. Was the dent more obvious?. I think so. Hard to say.  The breast didn’t feel any bigger, wasn’t painful, sometimes it felt different to the other side, sometimes I thought it was in my head.

In the end I just resolved to get it checked out, all the while thinking I was probably Little Miss Paranoid with an Early Death Complex. I booked an appointment with the GP week after returning from Australia. I had an appointment first thing the next morning after making that call, and was referred by the GP.  Strangely reassuring to know I wasn’t mad, but, oh shit.

Two weeks later, Tom and I were in the breast clinic and I was examined by a Breast Surgeon. A blur of tests later and we were as good as told I had cancer, but I needed to wait for the biopsy results (that was a really shit week, but a week I will always remember because of Georgia and Johnny’s party where we forgot our dark secret for a night and danced our socks off)

So what’s next?  On Tuesday 19th March (I know! Next week!! Fuck sticks! Hence the email) I am going to hospital for a mastectomy-reconstruction. This means, boob off, boob on in a oner (I know! Crazy!).  I am having a mastectomy because I have small breasts. Small breasts means less wiggle room. If I had a wonderful big rack of lovely-jubbly, a lumpectomy might have been possible. Who cares. I will not be sorry to see it go. I am no longer emotionally attached to lefty. Bye Bye booby. We’re so done.

I will have my breast reconstructed from my own tissue from my abdomen – some skin and muscle –  the best option when only having one breast off for a more natural result, and meets my desire for one operation.  It is however, a more intense surgery – up to 8 hours on the slab, 5-7 days in hospital, 6 weeks off driving, and three months to full recovery i.e. to normal baseline. Based on how my skin heals, and how I bounced back from both c-sections, and current fitness levels, however, we all anticipate earlier recovery. We also know that once I’m out of hospital, I will be able to do the basics like make a cup of tea, snacks etc. I don’t think I will be able to make lemon drizzle cake though. Just thought I’d throw that out there there.

I don’t know anything more about further treatment and won’t know until after surgery.

To reiterate, I have a diagnostically good,  treatable cancer and feel immense gratitude that we caught things when we did. It’s hard NOT to worry about cancer, but there’s an awful lot to be glad about right now, not least an incredible team at the hospital. I met my plastic surgeon last week and am pleased to report that she has a 0% fail rate on my particular surgery type and describes herself as a bit OCD, which is all you want to hear from your surgeon.

Jeepers, I’m on three pages with this email so I need to STOP WRITING but, before I go, I wanted to tell you the parting words of the surgeon who initially examined me, the same surgeon who delivered the official diagnosis a week later with my biopsy results.  She said, “ If there’s one thing I want you take away from all this it’s this; WELL DONE for coming in. So many women would have left this. WELL DONE”.

So, dear lovely ones, men and women, check yourself regularly and follow your instincts. Act, don’t think. Hold your loved ones close. Dance in your pants, swim naked and text us stupid cat videos as and when.  It’s all about the laughs now.

All my  love,

Shiv