“Spare Us the Drama” by Jo Taylor – A #MetsMonday Featured Post

Spare us the drama. Seriously? Who in their right mind would say this to a person living with metastatic disease? Well, keep reading…

I’m pleased to share the next #MetsMonday featured post by my online friend and fellow advocate, Jo Taylor. Jo is an incredible advocate accomplishing amazing things! Hers is the first contribution from across the pond — so, #MetsMonday post contributors have gone international! Yay!

Jo’s post is about toxic positivity. Oh yeah, one of my pet peeve topics. Maybe it’s one of yours too.

Enjoy the read, and be sure to leave a comment or question for Jo at the end of her piece.

Thank you, Jo, for sharing your voice on Nancy’s Point!

“Spare Us the Drama” – Thoughts on Toxic Positivity

by Jo Taylor

I had been thinking about what to write for this piece for Nancy for quite a while. There’s a lot I’d like to share about my work as founder of After Breast Cancer Diagnosis and METUPUK. But whilst pondering, there was a discussion in our METUPUK group, and again, it hit a nerve. 

So, I decided to write about the much discussed and written about “toxic positivity” that a friend and patient with MBC recently encountered on social media.

The statement below was written by a patient with primary breast cancer within another group regarding “positivity” after having breast cancer.

One of the MBC patients, I’ll call her H, mentioned the 20-30% of primary breast cancer patients who go on to develop metastatic disease.

H was very upset and getting more so with the positivity pushing. She directed the person who wrote the above comment to METUPUK and to the infographics below. Apparently, that’s scaring people.

H shared this:

It just hit a raw nerve for me to be honest, I’m not usually confrontational! I was awake in the night stressing about stuff, and I felt that yet again, we secondary/metastatic people are being ignored/disregarded/avoided.

Here we are again — it always seems to be up to patients to put the matter straight and try to explain why we feel marginalized, invisible, and ignored. 

Clinical staff are failing primary breast cancer patients by not adequately informing them about MBC. 

This is the main reason I created the red flag infographics below — to help clinical staff open up a discussion about “risk of recurrence” with a patient. This is where I feel the problem lies, BUT patients living with MBC are bearing the brunt of “Fear of Cancer Return” from primary patients. As if it’s OUR fault that we are addressing the lack of awareness.

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I think about COVID and the deaths that were highlighted daily, and I think also of HIV and the deaths that had huge campaigns and awareness. I see a big difference in how people now see us patients living with an incurable illness, and that is wrong.

E commented:

“Yep. I can see why it hit a nerve. It’s giving false hope that pretty much everyone recovers from breast cancer, which as we know, is not always the case. I remember at a support meet-up recently, the breast care nurses said they had over 600 primary patients on their caseload and around 300 secondary patients. That’s not just an odd few!

S said this:

“It’s hard because we are secondary, but in a way, she’s right. I can understand primary people wanting to bury their head in the sand and put aside that they could be one of the 30%. I would have done that, given the chance. But, I was diagnosed de novo — stage 4 straight away. However, I’m not sure cancer should be ‘something to be embraced as part of being alive’. It’s the usual story — it’s serious enough to kill us, and we need funding to help stop that, but also, lots of us are living with cancer, and so we are proof that with the right treatment people CAN live longer. Be realistic, but positive is achievable.”

And, yes, some patients can live longer but it all depends on your subtype and how aggressive your cancer is. 

Women with metastatic triple negative breast cancer (TNBC) have a poorer prognosis than other cancer types. We cannot ignore their urgency and plight to get better outcomes. We all have to shout loudly — TOGETHER — to get this much needed change for all metastatic breast cancer.

But some early stagers don’t see that the infographics are there to inform, and yes, MBC is scary but that’s their choice to bury their head….

Some argue that the positivity not picked up on is that 70% will be “cured”.

The trouble is… we don’t know which primary cancers will metastasize, and until there is a test to say “yes you are cured” patients must be vigilant because caught earlier it can help with their own outcome survival.

Reality is that 30% will metastasize “at some point” and this can be up to TWENTY+ years later. Everyone should know this and it needs to be instilled from the start and discussed, not hidden away like a dirty little secret.

All this is a classic example of “toxic positivity” and it’s what we hear with some of the breast cancer charities who promote the palatable pink fluff of positivity.

Why do we have to wrap cancer up in this cancer positivity even though we know the stats that 31 women in the UK are dying every day from secondary/metastatic breast cancer?

Additionally, we know that SBC/MBC is the biggest killer (in cancer terms) of women under 50 in the UK (stat from CRUK).

If we stop voicing the truth, things won’t improve. If we state that the disease is “chronic” and that we are all living well, we won’t get funding and the focus we need. 

This is exactly why METUPUK started the #BusyLivingWithMets campaign a few years ago. 

It’s there to show that, yes, we can be “busy living” even with metastatic disease, we can lead fulfilling lives, we can work, exercise, support our family, look after parents, and so much more.  

BUT the only way we can do this is if there is – awareness – access to drugs – access to clinical trials – access to surgeries and radiotherapies. Collecting data was made mandatory 15 years ago but never put into place. 

We are constantly failed. 

This was why METUPUK was created, to campaign and advocate for everyone.

Recently, a high-profile UK woman living with stage 4 bowel cancer died. She lived a full life, was accessing private healthcare, accessing the best treatments and support. She was positive; the disease still killed her. 

In a recent interview with another bowel cancer patient at my local cancer hospital, it was stated “that she (the high-profile woman mentioned above who died) had “glamorized” bowel cancer.”

Is this the perception the public has?

It’s sad this was the “positive” that was seen and sad that social media created this image that we are all living really well when in reality they don’t see the terrible days, the pain, the surgeries, the stress, the tears, and the fear in-between the Instagram perfect photos and reels. 

Stage 4 cancer has been made into something that is “doable,” and again, this worries me — the view that the general public, press, and decision makers have of this disease. 

It’s turned it into something less serious because we don’t want to think about the future and think about how it’s going to kill all these people — many with their whole lives ahead of them who’ve not even made it into “middle age”.

You might want to read, Let’s Stop Calling MBC Chronic!

Continually failed by clinical staff for even awareness of the red flags — that’s why the infographics need to be shared across the whole primary pathway — THAT’S what I’m aiming to do. 

The infographics need to be in clinics and with GP’s so the onus is on clinicians to highlight this. 

Many times it seems women do know something is wrong but are fobbed off or misdiagnosed or told they are too young to have cancer.

I cannot believe that someone would write “spare us the drama” when talking to a woman with metastatic breast cancer.

Tell that to the 31 that die every day, to the 31 families that are left broken and bereft because their child, mum, sister, wife, auntie or grandma has died of this incurable disease.

P who was diagnosed only 18 months ago said this:

I have to say as a patient at the sharp end of MBC – paralyzed by spinal tumours and treated for over 200 brain tumours last year — I find all the guff about positivity borderline offensive. Try being in my shoes and being ‘positive’. I’m the face of breast cancer as much as them and there’s not much positivity in my bedridden state. Anger, yes. Sometimes I choose to be positive for my mental health, but I refuse to have it forced on me.

Toxic positivity will kill us.

If we don’t show the truth, we are forgotten about even more. To be honest, many people think breast cancer is the “easy cancer” and don’t see the pink-washed reality. Some live this Instagram-privileged, air brushed, happy existence and life that doesn’t show the upset and sadness that there is. 

It’s much more palatable to deal with the airbrushed picture than a killer disease with a very short survival statistic:

At 5 years after a MBC diagnosis:  26% (CRUK – breast cancer statistics by cancer type and survival) 

At 10 years after MBC diagnosis — we do not have any figure…

There are no figures out from 10 years because we assume most patients are dead. Those still surviving are not counted. This is not good enough!

K commented:

Primary patients WILL naturally argue that the majority of patients survive as that is what they are told in stats and face to face. Nervous ones will especially and aggressively defend their need to believe this.

And lastly, L said:

I’ve seen lots of things written in the past about people with primary breast cancer ‘embracing’ their cancer and how ‘it’s a journey of recovery’ as this lady describes it. What offends me most is her lack of compassion and understanding with her final comment of ‘Spare us the drama’. What I hope she is spared, is from ever being told she has secondary breast cancer. Walk a day in another person’s shoes. Somebody who is living with the incurable form of the disease and when she finds how difficult a ‘journey’ it is, I hope somebody shows her some compassion and understanding about what life really is like wearing those shoes.

More positivity around cancer?

No thank you.

Jo Taylor, Founder of METUPUK and After Breast Cancer Diagnosis, was diagnosed with primary breast cancer in 2007 at the age of 37 while on maternity leave. She was diagnosed stage 4 in 2014.

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If you like this post, thank you for sharing it!

Do you have a question or comment for Jo?

If applicable, have your doctors been upfront with you about your risk for recurrence/metastatic disease?

Has anyone ever said to you, spare me the drama, or something similar, regarding your cancer? (regardless of stage)