Multiple Myeloma: The sword of Damocles

When creating any experience, there are always elements of the patient experience that unfortunately must be set aside and left out of the programme.

As much as we try, it’s impossible to include every aspect of the patient experience within the 24-hour timeframe of A Life in a Day, as the stories we tell span months, years, or even decades of people’s lives.

So, after creating the multiple myeloma and CAR-T cell experience in 2021 (where you live as a patient going through their fourth relapse and CAR-T cell therapy), I was excited to create this new experience as it allowed exploration of a key aspect of the condition that I wasn’t able to include before: living in fear of relapse.

Multiple myeloma is a ‘relapsing-remitting’ cancer, meaning that although the cancer can be treated, it can never be cured.

Anyone who has ever been diagnosed with cancer lives with a fear of recurrent or secondary cancers, but for people living with multiple myeloma, relapse is not just a fear, it is an inevitability.

A lot of people say, ‘I’m a cancer survivor. I beat cancer.’ I hate that way of speaking about it. I don’t see it as a fight and a battle because if you see it like that, you’re going to lose if you’re a multiple myeloma patient.”

During this programme we explore the challenges faced by patients living with initial symptoms, diagnosis and treatment.

However, after living with symptoms and side effects for months on end, these patients then must come to terms with the fact that there will never be a celebratory ‘all clear’ phone call. There is only a brief reprieve – usually only two to three years – while in remission, before the cycle starts again.

During that time, patients are expected to return to life as normal, with what some describe as the Sword of Damocles hanging over their heads.

Patients in this position find themselves in endless debates of how best to use their time:

Should they return to work (if they are even able to)?

Should they spend money on a vacation of a lifetime to enjoy their time in remission, even if it means jeopardising their finances for when they inevitably get sick again?

Should they spend this time with the people they love the most, even if it may put them at risk of infections due to their compromised immune systems?

Should they feel guilty about spending a day in bed when the side effects of their medication are too much of a burden, because they’ve wasted a ‘healthy’ day doing nothing?

While all these opposing thoughts are occurring, patients are trying to go about their lives as normal, while simultaneously being constantly reminded of their impending relapse through monthly tests.

I was ecstatic when I received the news that I had reached remission. I wanted to dance and sing and celebrate with my friends. That lasted for about three weeks before I had to go in for my first monitoring test and reality came crashing down that this was only temporary…"

As a participant in the programme, you will gain an insight into what it’s like to live with this fear looming over you as you go about your day-to-day activities. All while managing the long-lasting impacts of the condition.

How will you focus on a mundane task at work when you know your time is limited?

How will you choose to spend your time in remission?

How will you cope with the sword of Damocles hanging over your head?

Find out by participating in A Life in a Day.

Get in Touch

If you are interested or have questions about A Life in A Day, please reach out and contact us.

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