Tag: community

New writing: That shitty google search I regret doing

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As part of my next steps, I mentioned I would update a new chapter of my story – collect thoughts and responses and then continue with my analysis.

Extract from my writing:

When I did all those google searches, I truly was trying to stay optimistic, it wasn’t a self-torture method in which I was aware that percentage was going to come up. I guess maybe I was trying to find an explanation to how it all just came to happen and what is meant to happen next. After all, one day you notice your loved one is unwell, the next you’re told it’s a tumour, the next it’s malign, the next it’s got a name, the next you are expected to accept this is reality and is here to stay. 

Just like that. No guide, no manual, no explanatory video of what to do next. 

Everything had changed the minute I heard my mum’s unwellness was cancer, but doing that search served as a confirmation of that reality. It’s like, I had been trying to process what I had been told, trying to perhaps lessen the effect of it by telling myself “it can’t be that bad, it’s my mum, she’s healthy, she’s always been healthy” or “hopefully, there is a cure, more options… like with other cancers”. 

Feedback, responses:

Today, 23rd of August 2021, I posted one of my writings, an extract from a chapter I am yet to finish – but I wanted to involve comments of other carers who, like me, might understand the anxiety of searching up a loved one’s diagnosis online. What thoughts do they have on what I’ve said? Can they even relate? What advice is there to give? And so to my surprise, there have been some responses and most, I’ll be including in the continuation of the writing.

Disclaimer. Warnings. Making people aware. Hope. (key words from comments)

Some of the observation here so far are very interesting – there’s definitely relatability as well as searching for answers and finally, holding to hope and optimism. I love to see it. I will include this, with permission, as part of the continuation of my next reflection – even against the numbers, the percentage can still be your loved one – no battle has been lost.

Being in a cancer group for a week – observation

After much research done I’ve come to understand different aspects of the pain of being a patient who’s scared and uncertain about their future. Not just that about also a patient dealing with change, a withdrawal of a life they knew and the hard process of trying to accept their new reality.

Through being in a Facebook group for cancer patients and their caregivers I have been able to read their stories, sufferings, thoughts, what helps them and what doesn’t. I have seen a mix of hopefulness and hopelessness.

Some observations:

Most people seem to prefer tv shows more than watching movies for distraction. This is due to the length of what they’re watching and the effects of “the chemo brain”. Episodes are shorter and it helps with the shorter attention Spans and memory due to treatments.

Most people seem to find journaling and sharing their own story very helpful. They seem to seek comfort in others thoughts, empathy and prayers. In one of the Facebook groups I am in there are 41.2K members, in another 2k. This is a sign that patients and family members want and need community support through stories during such hard times. Most posts repeat the following words: fear, anger, anxiety, gratefulness, unfairness and change.

Breakdown of interventions:

  • Card deck with prompting questions to get to be able to discuss and open up with family members, caregivers, create a stronger connection through a hardship.
  • SunnySide* Film/hospital touring festival & platform; a platform of feel-good curated short films (no longer than 30 minutes) by fresh talent across the UK*/Spain (to decide). Ideally, they’d be screened in hospitals, either in the rooms for those who cannot go anywhere or as an event when possible. Otherwise, the option of making it solely a platform with whom patients in hospitals can access to with a password; there, they could have an option to journal based on the shorts they’ve seen. This would be curated by the help of psychologists.
  • A non-profit filmmaking organisation focusing on producing short stories written by cancer patients with the hope of offering a way to express themselves and seeing their own creation come alive with the help of young and socially conscious filmmakers and volunteers.* (partnering up with film schools, colleges, acting courses, hospitals); turning short stories into realities. (the money raised from screenings would go into cancer research)* (funding is important – how do we select the stories?) stakeholders: cancer patients, hospitals, family members
  • Inspirational platform of talks from cancer patients for cancer patients

I argue that a creative outlet that involves storytelling, communication and awareness could make an impact in cancer patient’s mental health. Whether that is by introducing a new project to be part of, seeing or achieving something they had not thought about before, unlocking their creative side, or by prompting them to communicate with their circle. Therefore, finding an intervention that can combine those elements and can remain an offline-online option to maintain inclusivity and broaden opportunities is essential.

The evolution of my question after a week multiple cancer Facebook groups:

[initial] How can creative entertainment improve the quality of life of hospitalised patients?

How to improve the effects of cancer treatment on mental health through creativity? 

How can creative entertainment support the mental health of oncologic patients? 

How can creativity improve the mental health of patients with cancer? 

[Current] How can storytelling support the mental health of cancer patients? 

key words: community, mental health, stories