I need to talk about hair.

Yesterday was my first meeting with an oncologist and I am PISSED OFF major. I woke at 5.30am then eventually launched myself out of bed at 6.15 to stop the churning. Churning mainly about all the stupid things you’re going to say to try and make me feel better about some shitty news from yesterday. I know. There you were just lying in bed somewhere fast asleep and I was already angry at you for all things you haven’t even said yet. So look, here’s the deal. I’m going to unleash my rage at you, then tell you what to say, and then everything will be OK. Got it?

My Oncologist broke it to me yesterday that I am going to lose my hair.

DON’T say, “It’s OK, it’ll grow back” because this is me right now.

Fleabag, Season 2, Episode 5. Filmed on my phone in the downstairs loo at day break this morning. Lights off. I needed Fleabag to console me this morning.

I know I prepped for this meeting. Yesterday’s blog was all about me being OK with the chemo, but through all that mental and emotional prep,  there was just this little itty-bitty blind spot.

Hair.

I just thought I’d cold cap my way through this one. I was going to do cancer, sure, but I was going to do quick and easy cancer. Cancer for softies. Y’know, with nice tolerable, gentle chemo where I get to keep all my hair, and click my heels through summer like a smug cancer twat endlessly celebrating my not-terminal diagnosis and maybe just having a wee bit of time off work, to you know, convalesce with style, but otherwise winning.

With hair.

I don’t do crying at these Big Cancer Meetings.  But yesterday it all fell out of me.

“I’m so sorry”, I sobbed to the consultant after she’d broken the news, “I know it’s only hair”. She put her hands over mine across the desk (is it just me, or did she mist up a bit..?) .

“No.”, she said, “I understand. You have great hair” . (And how much do we love the Oncologist right now?).

And before you’ve even had time to scream “shut the fucking fuckity-fuck-fuck FUUCK OOFF” into the abyss, I was signing consent forms for this kind of chemo and that kind of chemo and weeping again and saying, “it’s just.. I’m 42 and I’ve only just worked out how to do my hair”.

And once more Fleabag, just to drive it home.

So. I am in pre-emptive mourning for my hair. Don’t console me. Don’t try and make me feel better about it.

Any “but it WILL grow ba…” will get a “ZIP IT”.

Don’t begin any sentence with “well at least…”.

But you can do this;

“Shit Shiv, not the hair! You have amazing hair. I’m gutted for you”

“Babes, I love you and I love your hair. I’m crying too right now”.

Celebrate my hair mournfully with me. Respectfully, for about 15 seconds, hands clasped, one eye on the clock.

And then let’s all start looking at interim comedy chemo cuts. I am not letting cancer take my hair. We’ve got to get there first.

It’s Scary Cancer Fact Friday!

So friends, I’ve got an Oncology meeting coming up so I’ve been mugging up all things cancer. Yay! I thought I’d share a few key scary cancer facts that I’ve learned since moving on over to this side of the cancer fence. Not to terrify myself, mind, or you for that matter (we can all do without unnecessary frights) but just for a healthy dose of realism in amongst all the gratitude as I go into  Phase Two of treatment  (the shitty phase involving hard drugs, but not the fun kind).

Also because, WOW, I’ve realised how little I knew about cancer before this. And, frankly, how little so many non-cancer people know too.

This is happening a lot, for example;

Friend: I guess you’ve given up sugar to starve your cancer?

Me: Fuck off and pass the damn cake.

And this;

Me: OmiGOD, did you know that if the primary breast cancer spreads to another part of your body it becomes secondary and THAT’S INCURABLE (actual horror face)?

Friend: That can’t be true.

Me: Fucking well is.

OK, so that’s the first horrific cancer fact out of the way but I’ll elaborate a bit more because, this, as well as the other has really helped me be kind of ok with the idea of doing chemo, a thought too horrific for me to even contemplate in the early days (ANYTHING BUT THE CHEMO!!).

1. Primary Cancer is curable, secondary cancer currently isn’t. Secondary cancer is when the cancer from the original site spreads to another part of the body., or metastasised.  All it takes is one tiny little cell to break away from the primary tumour, find its way into your blood stream or lymphatic system and then latch onto another organ and start growing. For breast cancer, the next go-tos are often the lung, liver, bone and brain.. Some secondary cancers are curable, but metastatic breast cancer isn’t.

2. It can take years for a cancerous tumour to grow to a detectable size.Some cancers are really aggressive and fast growing. Some are slow growing and it can take quite a while  for one cancerous cell to become a mass** that can be felt or detected on a scan or even to present symptoms you might think worth going to the GP about.. So that means, yes, for slower growing cancers (like mine) you could be blissfully unaware of cancer until such time that it decides it’s time to present itself to you. By which time, if you catch it early, it’s primary, if not, it’s a metastasised secondary. See the first point.

3. There is currently no test or scan to reliably detect Micrometastases in the blood stream or lymphatic system.*** Micrometastasis refers to the tiny cancer cells that have broken from the main tumour but not yet formed their own growth in another part of the body. In my case, cancer cells were detected in one of my sentinal lymph nodes following a sentinel node biopsy at the time of my mastectomy surgery. That means, the node was physically removed, cut open and examined in order to find the cells. These cells were not detected by all the presurgery ultrasound or MRI scans. And they were MACRO not even micro – but still just invisible cancer sittin’ there playin’ the long game.

4. Your immune system alone is not enough to kill cancer cells. Cancer wants to win at all costs. Markers vary greatly from cancer to cancer, and researchers are learning more and more about this, but the long and the short of it is that cancer has worked out ways to fool our own immune systems often by tricking our  immune T-cells into not recognising it as an enemy and therefore fighting it. Antioxidants aren’t going to touch that bastard. It also knows how to spread and how to hide.

5. Chemotherapy kills cancer cells, but not your other cells. Chemotherapy drugs, the treatment demon I’ve been a bit terrified of, stops those insidious cancer cells from growing and dividing and eventually they die. The drugs also affect the healthy cells in our body, but these eventually recover. The chemo is all about halting a recurrence.****

Call me a masochist, but this is me squaring up to cancer’s worst so I can stomach the treatment options. Also kind of handy for you guys to know before you wave your little cancer-curing tincture at me and suggest I try meditation to un-think my cancer into oblivion.  And this is coming from a kimchi-eating, green-juice guzzling, yoga-loving, occasionally-meditating turmeric-junkie who has consciously been re-populating her microbiome for the past year.

I am actually heartened by the kind of clinical trials being funded by charities such as Cancer Research into things like turmeric and asparagine, and it’s entirely possible that the future of medicine lies in a more holistic, integrated approach with traditional and functional medicine working together, but when the chips are down, I am going for treatment with clinical evidence on long-term prevention of metastatic breast cancer.  And if there isn’t a randomised double-blind clinical trial with evidence to support the new miracle cure, it ‘aint on the table.

In short, I’ll take the damn chemo thanks very much. Cake on the side.


REFERENCES:

** Professor Trish Greenalgh & Dr Liz O’Riordan, The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control, page 9.

**** Professor Trish Greenalgh & Dr Liz O’Riordan, The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control, page 132.

*** According to my team, there are clinical trials currently taking place involving methods of detecting cells for triple negative cancers but these aren’t widely available.

I have referenced Cancer Research or Macmillan for definitions that might be directly helpful to link to for this piece. I have also strongly drawn upon Greenhalgh and O’Riordan’s book The Complete Guide To BreastCancer: How to Feel Empowered and Take Control . It has been a key resource for pulling disparate information together which has been key in building the bigger picture and preparing for key stages of my treatment. Cancer treatment teams tend to drip-feed information which is aligned with the treatment process. This can help people cope and process difficult information in small chunks. If however, you are the type to know more and read ahead, then this is a great bedside bible.


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}