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The world shrinks: life after diagnosis

After Fiona Ritchie Walker’s husband was diagnosed with a terminal lung condition, her world closed in.

A former journalist, Fiona woke up one morning with the first line of her poem that would win the Carers UK creative writing competition 2015 in her head: “Three months and all the ‘me’ words gone”.

“At the age of 56, I saw a world brimming with possibility”

A few years ago, our world was quite extensive. Working for Traidcraft meant I travelled frequently to Cambodia, Vietnam, India, Peru – all over the developing world.

My husband, David, loves travelling too, so when I gave up my job to spend more time with him and concentrate on my writing, we travelled together - from whale watching in Alaska to exploring Australia and visiting David’s sisters in South Africa.

Fiona Ritchie Walker 3

Closer to home, I volunteered for a couple of community projects I was interested in – a local foodbank and a church café playspace.

And at home, in my loft, I focused on something I’d loved for years: creative writing. I’d had some books of poetry published, won prizes with a one-act play and was working on a collection of short stories. 

Looking back, David’s illness first emerged when we were in the Kalahari, doing a guided walk in the sand dunes. I’d noticed he had difficulty breathing, but just teased him for being so unfit.

Then, last January, he developed flu-like symptoms which we attributed to a recent flu jab. His condition worsened and eventually, after an X-ray, David was sent to the hospital’s emergency admissions.

“The lack of care and support we received in and after diagnosis was devastating”

Even then we were expecting him to be given some antibiotics and sent home – but he was kept in for three days. The initial diagnosis was Idiopathic Pulmonary Fibrosis (IPF) and while we waited for a scan to confirm it, we were left to research the condition ourselves. I looked up the information on my phone as I’d no idea what it was and was stunned to discover that most people with IPF only survive a few years.

The lack of care and support we received in and after diagnosis was devastating.

As a journalist, perhaps I should have been able to ask questions and get the information I needed – but my mind felt numb. I drove home from the hospital in shock, wondering how I was going to break the news to our two sons.

Through the British Lung Foundation and a local support group, we very quickly got hold of lots of information. The diagnosis changed to Non-Specific Interstitial Pneumonia (NSIP), but the outlook remained the same and David went downhill fast. Within months he was on oxygen and in a wheelchair. We had a stair-lift put in.

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Initially I was able to help him continue working by driving him around, helping him to lead services, and visit people. But this meant my activities had to go. I couldn’t do the volunteering and had to stop going to a writing group – something I’d loved being part of since moving to North East England from Scotland in 1992.

The deadline for the short story collection approached, but I’d got nothing for the editor, so it was put on hold. Other writing projects stalled. I wrote a poem for David for our wedding anniversary, then nothing else for months.

Instead of planning poetry readings and holidays, I was cancelling flights to the States and filling my diary with hospital visits. When you’re able-bodied, doors and steps seem invisible. But when you’re in a wheelchair with oxygen, every journey is a challenge.

I was so busy trying to care for David, to fill in Blue Badge and benefit forms, that I had no time or space for creativity, or for doing the things that gave me a sense of identity. I don’t think I even missed them, they just disappeared.

Then I came across the Carers UK creative writing competition on Twitter. I thought I should write something for the competition, but stared at a blank notebook for days. The day before the deadline I woke up with the first line of the poem in my head.

“Three months and all the ‘me’ words gone.”

“Writing helped me to realise how beautiful it can feel to live in the present, treasuring time with my husband"

It sounds like a bleak beginning – and when I wrote those words, I really had no idea how the poem was going to end. I’ve always found writing to be a balm and a way of understanding myself, and it was the process of writing the poem that made me realise just how far I’d come since David’s illness was diagnosed.

While our circles had certainly narrowed, we’ve found ourselves exploring but in different ways - visiting new cafes we can wheel into, going on walks where we can, enjoying each other’s company and spending time with family and friends. We’re determined to value and make the most of every single day.

In the past we’d often talk about films we wanted to see but rarely found time to go to the cinema. Now we’re regulars.

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We have an amazing network of healthcare professionals who visit, so - unlike our experience at the time of diagnosis - we do feel well supported and cared for. While my world may have been diminished in geography and creative opportunity, writing helped me to realise how beautiful it can feel to live in the present, treasuring time with my husband and noticing things in the world around me that I would simply have rushed past before.

Writing this poem also seemed to give me permission to write in my new circumstances, and my notebook is no longer gathering dust, which feels like a prize in itself.

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There’s something very fragile in this beauty and this happiness, as we can hear the ticking of the clock in the background. But now I can look back on these last months and see such a lot of fun and happy times, and I’m grateful for the opportunity the competition gave me to recognise this.

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