I was invited to discuss some of the issues around SBC diagnosis
So a few weeks ago, I was invited to talk on an international podcast called 'Your Killer Life'.
If you can get past the excessive giggling (I was nervous), then I think it is a great summary of where the failures lye, when it comes to making secondary cancer chronic. But it is not as 'heavy' a listen as you would think.
Please pop it on in the background and give it a listen . I'd be curious what you think?
I hope I made some important points clear enough and i'm happy to elaborate on anything if need be.
Its on Spotify -
The website -
Wales is falling behind...
If none of this makes sense, please read the original post.
Can I just first say a massive thank you to everyone that has emailed members of the cross party group for Cancer (CPGC). My social media inbox's have been overwhelmed from people wanting to help. If I did not manage to get back to you then apologies, - this would have been because I had already gotten a reply from the Government/ Cancer groups and was busy working through their sent attachments.
Now without further adieu lets get into what happened in the last 24 hours.
1) David Rees MS got back to me on Twitter and assured me they had meeting minutes for a more recent meeting with the CPGC. It had just not been updated on their website yet.
2) I have been seeking advice on the Welsh health system/ politics from a lovely chap called Andy, and he works for Cancer Research UK. He sent me the report from an inquiry into cancer waiting times when the CPGC met in November 2020. What is relevant here is the fact this report calls for the need of a new cancer strategy... He also let me know the last CPGC meeting took place last Tuesday and now the Senedd has gone into a 'pre-election' period, meaning this wont even be looked at again until the elected party has settled in (In May).
For clarity and transparency please see my reply below, but for privacy reasons I cannot share Andy's original email.
A call for support - where is the cancer strategy?
Wales has no concrete cancer strategy as of 22/3/20.
Have you heard about it on the news? Don't be daft.
We are sick of meetings, audits and wishy washy abstract statements.
We have been left on our own, everything from delays to DNRs and guess what?
Now the welsh government have given us a huge FU with no cancer plan. The World Health Organisation recommends every nation should have a cancer delivery plan and now we are the only nation in the UK without one.
I guess approx 9000 people dying from cancer in Wales EVERY YEAR is undeserving of a concrete plan with accountability.
Can we STOP pretending COVID has been causing all these issues?
All it has done is expose how fragile our health system really is. If we had a competent government we could have treated COVID and cancer... the fumbling, apathetic, ignorance is getting freaking exhausting.
We at least deserve a fucking plan.
Total Health feature
I am stunned at the lack of urgency in finding new treatments. Cancer Research UK are making around £634 million in a year and they have yet to find an alternative to chemotherapy, which can be barbaric. Breast Cancer Now say they aim to make secondary breast cancer chronic by 2050. That is far too slow, and they are not transparent in their goals or pathway.
I'm in the Daily Mail for something legal! .
Jokes aside... On the back of Breast Cancer awareness month the issues are still as pressing as ever.
I appeared alongside Dr Bex Lewis and founder of METUP UK, Jo Taylor, to talk about the gross under-representation of women with secondary breast cancer in mainstream media.
So grab a coffee, scroll past all the adverts and have a good read, HERE.
If I said to you, 'think of single efforts to raise breast cancer awareness', you would not be blamed for thinking of a youngish woman, grinning at the camera as she squeezes her rack in front of a camera with the appropriate hashtags.
Has it ever occurred to you how 'sexy' breast cancer awareness can be portrayed?
During the one day set aside for metastatic breast cancer, no bra day completely drowned out our efforts towards raising life saving awareness. If your anything like me, I had to see what the fuss was about and clicked through some of the BCAM awareness hashtags. I was absolutely stunned to find myself scrolling through countless images of women like the ones below, rows of men in the comments laying on emoji's with countless innuendos.
I'm sure you can work out for your smart selves why this is an issue.
I'd like to invite you to take a few seconds out of your life to take my quiz!
Does SBC upset you to the point you need a trigger warning?
It's Breast Cancer Awareness Month- the donations are rolling in, no bra day happens to be real (on SBC day nonetheless) and influencers are fondling their tits online... What's not to love? Now if your reading this I’ll spare you the pink positivity rant and jump straight to the point.
Did you know that having a deadly condition like Secondary Breast Cancer actually upsets some people to the core, to the point it just ruins their day?
Oh, I am sorry! I forgot to mention the people I am referring to are usually not the ones suffering from the deadly development of the disease.
Imagine not only having your life ripped away from you, but then to actually talk about your recent existence becomes so taboo it actually offends some people? If I am honest, I didn’t realise this was even a thing, but here we are.
Cancer is an absolutely horrendous illness, and my heart genuinely goes out to half the population which will\have experienced it....
A great opportunity to cut through some of noise during breast cancer awareness month: Nick appeared alongside Jo Riley, the founder of Cancer Pal to talk about the realities of supporting someone with breast cancer.
Grab a coffee and settle in for a few minutes.
Nick and Jo were interviewed by Steve Ladner. He is partner of Tracey Crouch, MP for Chatham and Aylesford and former Minister for Sport, Civil Society and Loneliness. Tracey was diagnosed with breast cancer in June 2020. She has had surgery and is currently undergoing chemotherapy treatment for breast cancer and Steve is supporting her through this.
Cancer Pal is an amazing one stop shop if you are someone like Nick. It can be so difficult to know what to say or what to do when you are trying to support someone going through this disease.
From the handy bite sized cancer tips and expert guides (surprise your friend/partner with helpful advice), to the thoughtful treatment boxes, you are bound to find something to help you get your head around the treatment or just to feel like your doing something productive!
...To my friends and family
If your wondering why my social accounts have suddenly seemed a bit 'full on' with the 'cancer stuff' lately, it's because I have grown sick of watching/waiting for myself and my friends to die, and I felt I NEEDED to do something...
To my friends/family:
If my content makes you uncomfortable, I'm afraid I cannot apologise to you, but I want you to know, I understand.
This isn't to upset you, a call for attention, or a ploy to fulfil some kind of ego thing.
This is my life and I intend to fight the system in order to keep it for a bit longer.
The more I have learnt, the more passionate I have become about the preventable Injustices in cancer treatment, and we need to talk about it.
(Believe me when I say I would rather have a semi active social account, posting the occasional holiday snap and drunk status).
I will continue to make aware, occasionally shock and upset you, but please understand me, when I say I am at the point now, where I have nothing left to loose.
Myself, friends, and other activists are literally dying while trying to fight the system that fails us and the hard truth is, it is too late for many of us...
But realise this - we are using our last splurge of spirit on this earth to ensure it will not happen to you.
All I ask is you stand with us when the time comes.
But I'll still always love you, regardless.
"I want to live... and so many other people, who were robbed... Should have lived".
This is my Bio from
METUP UK 's, #Iamthe31 campaign.
Secondary Breast Cancer Day
This is Met Up UK's campaign for Secondary Breast Cancer day .
We wanted to put the faces behind the statistics of the 31 people dying every day in the UK from #SBC
We are children, lovers, parents and friends.
We have hopes, dreams and aspirations.
We have a life expectancy of 3-5 years.
We are the unspoken truth of the failings in the system.
We are the 31.
You might even see a little face you recognise!
Check out https://metupuk.org.uk/i-am-the-31/
For more information, bios, videos and how you can get involved with the #IAmThe31
If your reading this and are one of the 31, please consider sharing your story to our campaign.
If your a supporter please share and tag
to help us get our voice out!
... Got me feeling like:
I'm still angry.
1/3 of people who get BC will die from secondary breast cancer (SBC), but you wouldn't know this from breast cancer awareness month (BCAM).
Secondary cancer (stage 4, metastasised, spread, incurable, fatal. All mean the same) is being engulfed by the bloody pink ribbon campaign...
Just look at #breastcancerawarenessmonth
... Out of 31 days. Just 1...
1 measly day is given towards the awareness of SBC.
... But fuck the life
So tomorrow is the start of Breast Cancer (BC) awareness month!
If you are a total Rockstar and are considering helping out charities in anyway - can I just please, please, PLEASE ask you to be mindful where your hard earned $$$ is going?
Look beyond the patronising 'SAVE THE TATA's' campaigns (like... c'mon) and swipe those bloody pink ribbons to the side and look into the shadows...
I think it's fair to say we are all aware of how to check our bloody breasts by now, I mean... I'm no expert, but I think the REAL issues are actually getting referred and treated effectively?
Still with me?
The 'Walking Dead'
I am sure a fair few of us feel this sorry looking world is looking a tad apocalyptic in 2020, and although I cannot speak for my secondary sisters, I have begun to try and own my new role as ‘the walking dead’. Stuck in a strange limbo, I am unable to make and carry out the plans a 28-year-old should be preoccupied with. Yet I am also not at the point of dying just yet, so need to keep existing. My ambitions and career prospects have been reluctantly abolished, while I am too sick to carry out my job or make any commitments to still being here in 5 years time. I could go on, but you get the idea.
I still feel ‘gutted’ that my time has been so short, but also the anvil still hasn’t smacked me on the head just yet. Oddly, I am still feeling largely accepting and at peace with my approaching end. Death is the most taboo topic to speak about, especially at my age... but what if I told you it has become the simplest factor to deal with? I recall writing an early entry on here in the spring, commenting on the soft hue of the light behind the already bloomed daffodils, and the chill which descended down my spine as I realised that I had lost time already. Well now the deciduous trees are already turning into a chorus of soft warm shades as time continues to slowly tick by. I am conscious I have eaten into just under a third of my ‘statistically averaged’ time for someone with my condition, and I feel a small ‘pang’ in my gut. Out of the three ‘big guns’ of secondaries, death is the most acquainted and the most natural. We all must face it, regardless. The other two factors however, are what keep me awake at night...
This is another rant post...
Sorry for leaving it two months!
If I am being completely honest the last few rounds of Tax have had me feeling more crumpled and worthless than the discarded first wig, during a wig reveal of a desperate drag queen lip syncing for her life.
It has been tough and I am sure my sanity has slipped somewhat.
As lockdown eases, I watch eagerly on the side-lines still within my shielding bubble, absolutely chomping at the bit to get on with life. Chemo has finished and I am slowly recovering from the horrific side-effects... As I write this, I am fighting to keep 6 fingernails on – the joys!
I had a chat with my oncologist this morning – he just about had more enthusiasm in his voice than a Brummy Tax advisor, “Great, here we go” I thought to myself, not like I’ve been waiting 14 days for my CT results or anything. So, a few developments since I was last here...
...And Friends. 'The Story 3'.
I awoke at around 5am, still exhausted, in a strange private room. The walls were a usual magnolia but the blackness of the early sky rendered them unrecognizable. The gloom through the small window gave the room a bleak and haunting feel. Lying there...staring at the dark wall, I recalled Nick had only left 2 hours ago, but it felt like a lifetime. I turned to the window and watched slowly as the slither of grey light started to break into the sky and slowly bleed into the room, until the fragile moment became interrupted by a nurse. The rest of the morning passed in a blur as I was pumped with morphine for the impending hospital transfer. At around 9am Nick was back by my side and the paramedics arrived to transfer me to Singleton SAU – I was hugely apprehensive given my past history of care here, but was reassured all had been taken care of.
Chemo 1 is underway, good o’l Tax again.
It has been a hugely disappointing the last few weeks and I am feeling really distrustful of my oncologist.
To break it down, he had me on a high dose of steroids (Dexamethasone) for 4 weeks when they were not required and I should have been weaning. Alarm bells started ringing when Nick and I sat down, and the oncologist took one look at my puffy frame and in an annoyed manner asked me why was I still on steroids and how many 'mg' I was taking. Now bare in mind I am still in a morphine-ultra chemical numbing haze and new at this, how the hell should I know? I just take what you told me.
This car crash of a clinical visit had Nick lose his temper and walk out at the lack of organisation and had me in tears at the prospect of having to change treatment lines already! It turned out my oncologist's confident gamble in declaring there is only a 5% chance my cancer will be a different sub type (He thought I would still be HER2- despite not even having a biopsy) and proceeding with ‘Ribblo’ was the wrong choice. It transpired I was in fact borderline (HER2+).
Now this is relevant because your care provider should absolutely be 100% sure of your cancer subtypes (ER, PR, HER2) before moving forward, as this will determine what treatment you can have, and ultimately affect your life span.
Amazingly, he could not understand why I was upset. You know, after being told off for essentially taking what he told me (and it harming me), and finding out I was put through a full cycle of oral chemo before realising it was not suitable for the cancer...
On top of this, I asked him to point to where my tumours are and he didn’t know exactly. This led to the secondary breast nurse searching on the computer for the latest scans. There were contradictions around Zoladex and he tried to explain how to ween off my dosage of steroids by ignoring me and explaining it to Nick. Not to mention I was terrified of going on Tax again, it absolutely battered me last time.
Wait... Am I supposed to trust this guy with my life?
Ha, yeah fuck that.
Escaping reality with mindfulness
When being repeatedly jabbed by an apologetic nurse trying to find a vein to leak vital poison into your blood.
Or when you're lying flat on your back, tightly strapped in by your head by your silicon mask for another radium blast.
Or... How about when your just on you own, and those demons make an appearance. Playing with your heart rate, tightening your throat and sticking pins in your gut?
Regardless of what challenges you face, they are significant due to subjectivity and personal perspective. The problem with us, is that we compare and measure our situations and selves, rather than just being appreciative with what we have, and what we can control. Whatever your coping techniques, I think it's fair to say the more you indulge in external opinions from the mainstream or social media, your overall mental wellbeing will inevitably start to decline. Usually manifesting in differing levels of anxiety. Lock down in itself is already sending people ‘over the edge’.
In these crazy times, it is vital to ground yourself.
'The Story' 2: A nightmare Deja vu
I vividly recollect a thin warm trickle slowly dripping over my right eyebrow. The soft pillow pushed tightly down just on top of my clammy forehead, as I tried to release the throbbing pressure from my front left temple. It was about 6.30am and I was acutely aware I had to get up for work in 15 minutes, despite having spent the last 7 hours buckled into a foetal heap, nursing my relentless nausea. I pulled the pillow further over my eyes when Nick turned the hallway light on... I could hear the start of the comforting familiar stir to the house. The quiet bedlam began with Alaska's tail hitting his bed, and as he started to squeak, he informed me the cats were pattering down the stairs towards the kitchen in anticipation of little filled bellies.
A ' no holds' page about my personal fight with incurable advanced Breast Cancer, in the hope it will give a realistic, detailed account to other young women going through the unfortunate illness.