A Life Full of Service and Joy

At 60 years of age and at the end of 2018, Linda retired from her career as a librarian and happily kept herself busy with volunteering and travel. She trained for and completed a 100-kilometre pilgrimage in Spain, helped people with hearing loss learn lipreading, and was a special minister distributing holy communion at her local nursing home. Her favourite past time was volunteering 2 days per week at her local Catholic book shop.

“My jaw dropped to the floor when I found out I could volunteer at the bookshop. I loved it! Books are important to me and so in my faith. It combined both my passions.”

The First Signs that Something Was Wrong

But things changed in 2022 when Linda got sick with low iron levels. Initially thought to be a gut issue, Linda was seeing a gastroenterologist, but when her haemoglobin levels dropped so low that she needed an immediate blood transfusion, she was referred to a haemtaologist.

As her health declined, Linda reluctantly had to give up her activities one by one. She could no longer drive the half hour to the hearing classes without getting dizzy and was worried about visiting the nursing home whilst unwell.

A Difficult Search for Answers

Getting a proper diagnosis took some time. Myelofibrosis was suspected and then MDS. Linda admitted that “by this stage, I was getting a little bit anxious and confused.”

She was quite taken aback when told that a stem cell transplant would be needed to extend her life beyond five years. “You could have knocked me over. I was absolutely flabbergasted. I didn’t even know transplant was a thing,” said Linda.

Facing a Stem Cell Transplant

In May 2024, Linda had a stem cell transplant. Linda recalls the 100 days post transplant, and the isolation, as being awful. She developed mouth ulcers that made eating difficult and was suffering from nausea and vomiting even after she returned home.

Isolation and the Mental Battle

Once back at home, Linda found the isolation “really, really hard”. A daily church goer, she now had to join services online. She continued to experience severe nausea and vomiting, was losing weight, and mentally was really struggling.

The mental battle frightened her the most. She was worried that she wasn’t strong enough to get through it. Linda remembers repeatedly asking her husband, who had been by her side through everything, “I will get better, won’t I?”. She asked him no less than 10 times a day.

He gently supported her, taking her for small walks around the pond. Her friends eventually began visiting her again after keeping their distance to avoid passing on infections. “They were really worried,” Linda recalls, “and I was worried about myself too.”

A Diagnosis that Brought Relief

A change in her anti nausea medication helped somewhat with both nausea and anxiety, but when weekly blood tests showed extremely low potassium, Linda was eventually diagnosed with gut graft-vs-host-disease. This diagnosis and further changes to medication finally helped her get back on track. Still, she found herself struggling with the loss of her volunteering roles and the sense of purpose they once gave her.

Finding Purpose Again

By Christmas, Linda was feeling a lot better. She set herself a project to get the house ready to host Christmas with her friends. “It gave me purpose and something to do.”

A few months later, Linda read an article about Thomas, a man who had written a book about his recovery from a stroke. His book, “Let’s Go for a Walk”, described his persistence with exercise to regain movement. The article mentioned a book launch happening that night. Linda made the fateful decision to attend, finding it “very inspiring, listening to someone else and their story”. She also learned how poetry had helped him through his recovery.

Rediscovering Creativity

Inspired, Linda signed up for Thomas’s poetry workshop. She had previously dabbled in poetry, having attended a workshop before she became unwell. At the workshop, participants were asked to take something from nature and write 3 lines on it. Linda wrote:

I am Tortoise

Slowly walking

Hiding in my shell

Looking to meaning

After the workshop, Thomas encouraged her to “spend some time with the tortoise and see where it takes you.” Linda also decided to join up to a visual journalling course, which introduced her to painting and drawing. She continued to take more courses as she further explored writing and art.

The Tortoise Becomes a Guide

The tortoise inspired Linda to write her next poem, about blood cancer and her stem cell transplant:

Blood Cancer

Blood cancer

Out of the blue

Stem cell transplant

To extend my life

Beyond five years

Arduous and rigorous treatment

Almost one year on and

Still in recovery mode

But I’m lost….what happens now?

What’s my purpose now?

What’s my meaning in life now?

I seek wisdom from Nature’s Tortoise

She tells me:

‘When you are ready

You can poke your head out

Of your protective shell and

Look around for new possibilities

You can shuffle on your

Twisted front feet,

Feet that are made to walk

On smooth or rough ground

So you can go anywhere you like

You can hide in your protective shell

Anytime you need’

My tortoise also tells me:

“I am blessed with a long life span

And so are you now,

After your stem cell transplant

So keep plodding along

Slowly and surely

You will find

Your purpose and meaning”

A Creative Awakening

And so it began. Linda wrote poem after poem. She just couldn’t stop. Eventually, she compiled a book combining her poems and artwork.

The poetry and art have helped Linda rekindle her sense of self. They have given her something to feel proud of – something to be enthusiastic about. After the transplant Linda felt like she was “nothing”, having been forced to give up so much of what once filled her life. But the courses truly lifted her and helped her rediscover meaning.

The Power of Community Through Transplant Tribe

Attending Arrow’s Transplant Tribe also helped. Talking to others going through transplant reassured her she wasn’t alone. “At each session I would gain a little useful snippet from someone. Being able to meet and talk to people who have gone through the same experience meant that I wasn’t alone in my journey. Listening to others encouraged me to keep on going.”

Linda’s Advice: Be a Tortoise

Linda’s advice to anyone recovering from a stem cell transplant is simple: Be a tortoise.  Poke your head out just a little bit. Have the courage to try something new.  It will open you to a new circle of people – and before you know it, one thing will lead to another.

Moving Forward with Gratitude

Today, Linda is back into exercise. She walks and rides her bike. She does something most days and goes to the gym twice per week. But more than anything, she is grateful to have begun finding her purpose and meaning again.