Living with Uncertainty & Demonic Bus Drivers

Posted: January 20, 2016 in Round Three
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Living with uncertainty

Sometimes referred to as the ‘Sword of Damocles’, otherwise known as a pile of crap. This is the terrifying precipice those of us with metastatic disease occupy much of the time.

If you’re living with metastatic disease, you could have 6 months, 6 years or even longer. There’s no way of knowing.

A common reaction to those dealing with this uncertainty, is that “you might get run over by a bus tomorrow”. It’s always nice to be reminded that, as well as having a life-limiting disease, you’re still at risk of being run over by a bus, but try living with a demonic bus driver following you around night and day. He chases you through your dreams. He’s there revving his engine when you wake in the morning.

When the drugs are doing their job and everything is stable, you might get some respite, but he’s never far from your door.

My demonic bus driver has been on full throttle since November, when I found out that the EE combo (Everolimus/Exemestane) is no longer working. Since then it’s been an anxious time of waiting for treatment decisions to be made; finally starting a new drug in December (low dose cyclophosphamide), only to find out last week that this drug probably isn’t working either.

It can be hard to function in the ‘normal world’ with this kind of uncertainty hanging over you: What drug will they try next? Will it work? What if it doesn’t work? These are the questions that keep me awake into the wee small hours.

I find it difficult to cope with everyday life with this continual background stress. The small-talk people make in everyday life seems so trivial when there’s a real possibility that your days are numbered. When friends and family asked me what I wanted for Xmas, I couldn’t think of anything. There’s no “Gift of Life” on an Amazon wishlist.

Looking well

This might seem a hysterical over-reaction to those around me, when outwardly I look so well. This is one of the strange paradoxes of living with Stage IV. Despite having a body riddled with disease, many of us look healthier than patients with primary or early (Stage I- III) disease.

There are several reasons for this. The main one being, that many of the new drugs used to treat Stage IV are more targeted and less invasive than those used for treating primary disease.

With primary disease, the big guns are drafted in, with chemotherapy often leaving patients as bald as a coot and as sick as a dog. With secondary disease it’s different. Treatment is ongoing and quality of life becomes just as important as controlling the disease. Our medical teams have the difficult job of finding a balance between the two.

Treatment for secondary disease can still make you ill, but if you’re lucky you find a drug that not only keeps the cancer at bay, but which allows you to have a reasonable quality of life. This was the situation I found myself in last year on the EE combo, where I enjoyed around 8 months of stability with very few side effects, aside from the odd mouth ulcer and a little fatigue.

With no visible symptoms of disease and drugs with minimal side effects, it’s easy to forget that you have a life-threatening illness. Denial is a comfortable retreat when everything is stable, but when the shit hits the fan, the demonic bus driver is back with a vengeance.

More recently, physical symptoms have made it increasingly difficult for me to bury my head in the sand. Recent blood tests showed that my liver function is all over the place, I’ve had an increasingly painful left hip and I’ve been having ocular migraines (a completely new symptom).

I’m back in treatment limbo: waiting for scan results; investigating different treatment options and potential trials; as well as looking into ‘alternative’ cancer treatment centres. My situation feels like it’s becoming increasingly desperate.

For this reason, my business Killer Kilts has been put on the back burner for the time being. I have no motivation to run a business when my life hangs in the balance.

My body is riddled with cancer – I have cancer in my liver, my lungs, my brain and my bones – yet to look at me you would never know.  I have days when I’m really exhausted and sometimes it’s hard to gauge how far I can push myself. This weekend I walked up Mam Tor, my first big hill in ages, which felt like quite an achievement for someone with Stage IV.

Looking so well can make it difficult for friends and family to comprehend the gravity of your situation. Breast Cancer is often viewed as the easy cancer to have, but the 5 year survival rate for Stage IV breast cancer is less than 20%. This means 80% of women with Stage IV don’t make it to 5 years beyond diagnosis.

This is evident in the support groups I belong to, where we’ve lost so many girls recently, it’s become quite terrifying. Nearly a quarter of the girls I met at the Breast Cancer Care ‘Younger Women with SBC event‘ in October 2014 have died in the last year: Jane, Carol, Claire, Charlotte, Alison, Emily, Rashpal, Lynn and Dawn. Not only were these friends, they were wives, sisters, daughters and mothers, young women with a future ahead of them. With 12,000 deaths a year in the UK from secondary breast cancer, these women are just the tip of the iceberg.

Losing friends is one of the toughest things about living with this disease. We mourn our friends passing and pray that we’re not next. Ours is a precarious existence, where we cling on to hope and drift around in denial, because the reality is often too horrific to contemplate.

If you’d like to do something to support women (and men) with secondary (Stage IV) breast cancer you can donate to one of the following charities or sign up for one of their campaigns:

Second Hope is a brand new UK charity and the only one specifically for people living with advanced breast cancer. Their focus is on raising awareness, providing support, campaigning and funding research into the disease.

Breast Cancer Now campaigns and funds research with the aim that by 2050, no-one will die from the disease.



  1. Katharine, you express yourself so well. Even though I’m living a similar experience to you, your ability to write and describe give me fresh insights into my own life when I can’t find the words myself. May we both be in that 20% that live for five years and beyond.

    • killerkath says:

      I hope so too Gaynor! I’m nearly at two years post diagnosis and the odds increase over time. I hope you’re keeping well xxx

      • Rosalie says:

        Brilliant post Katherine. I love your writing and how you have explained things so well for people who aren’t going through this. You are a fighter though and looking into all your options all the time – most people don’t do that. They follow their medical team’s every instruction and completely blindly. Some of the girls on your list above refused the COC drugs simply because their oncologist said no. You wouldn’t do that. I’ve got faith you will be in that 20%. Thinking about you daily, even though we’ve never met, just because I understanding how terrofying this whol situation is. Big hugs xx

  2. joy1975blog says:

    What an inspiration you are lovely lady… and I love David Shrigley too, I went to his exhibition at the Hayward Gallery, made me laugh, feel a bit sick, think and feel creative, he’s so silly yet so brilliant!! xxx

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