The Talk of Hope podcast launches with patient advocate and writer of My Lovely Lungs, Mel Erwin.
From being diagnosed early and undergoing surgery to learning her cancer had returned and was now incurable, Mel’s experience of lung cancer is extensive. In this first episode, Mel talks about the shock of her diagnosis, the side effects of chemo and why she’s telling researchers to go for a cure.
Here are five moments of hope we can take away from Mel…
Hope is tangible
When Mel was first diagnosed with lung cancer, she wasn’t a fan of the word hope. She described it as a ‘wishy washy’ phrase.
However, as Mel became more and more familiar with the community and the richness of what’s happening – the research, the development, the new drugs – she realised there is tangible hope and it’s not ‘wishy washy’.
Mel was listening to a lung oncologist from the US, and he described himself as a ‘realistic optimist’. That phrase resonated with Mel because she is optimistic but not in a banal way. Her optimism is based on things we see happening in the real world – clinical trials and new drugs, things that will mean people will live longer, lovelier lives.
Chemo may not be as bad as you think
The public perception, what we’re fed through films about chemotherapy is dire, but the truth is, it is so personal.
Describing it as the ‘ugly sister’ drugs – a combination of cisplatin and vinorelbine – Mel suffered with many different side effects. She was in and out of hospital and was incredibly sick, so much so that her dosage had to be reduced to 75% because her body wasn’t coping.
However, she also knows people who had the same treatment but tolerated it far better. She met people who said ‘Oh it was alright, actually. I was bit nauseous and tired, but I was ok.
But even as awful as Mel’s experience of chemo was, there were still ways to hold on to hope.
She didn’t lose her hair. She drew on her ‘cancer crew’.
And ultimately, the hope comes in trusting that we are a lot more resilient than we think. When it comes to survival, we get on with it!
From being just a patient to person with lung cancer
It’s safe to say now, several years in her diagnosis, Mel would describe herself as an advocate. But it wasn’t like this in those early stages.
Mel was on autopilot. All her energy was focused on dealing with what was immediately in front of her. Surgery. The biopsy results. Needing adjuvant treatment.
She wasn’t the feisty self-advocating person she is now. She was broken. She was too broken to look anything up or think of alternatives. She was just a patient. She trusted her doctors and hand them control.
But now Mel recognises you must play your part in your treatment and care, especially with the NHS being as busy as it is. Check that what you’re being told to do is correct. Ask for tests if something doesn’t feel right, or you’re worried.
It’s about working as a team with the NHS, your partner, your family and your community. That way you aren’t just a patient, defined by your diagnosis. You are a person with lung cancer.
She doesn’t want a bucket list
Mel may be living with incurable cancer, but she plans to live for decades. It isn’t false positivity because there are options. That’s why Mel doesn’t have a bucket list.
She simply wants to spend her days doing normal beautiful everyday things. She wants to plant daffodils. She wants to do six loads of laundry. She wants to do all the advocacy work.
Whenever Mel is asked about her lung cancer, she always says it is incurable because there isn’t a cure yet. She doesn’t want an extra few months or years, researchers. She wants a cure.
Writing has helped the healing process
Fatigue is the biggest side effect of Mel’s treatment, something she finds very frustrating. It can stop her from being the va va voom person she is. But as she learned to adjust, Mel has found a new outlet, or in her words, a creative unleashing.
Writing is something Mel can do sitting down. It allows her to lay out a narrative and depict the poetry of an experience. She can dive mean into how she felt in a given moment and, by doing so, is a way of partly healing herself from the trauma of lung cancer.
Whilst not everyone will choose to share their writing so publicly, Mel suggests that even writing down a few words can help release emotion and help us to recognise that life can be both painful and beautiful.
Read Mel’s blog My Lovely Lungs and follow her on Instagram