Lockdown and leukaemia: stories and poems from patients

In this blog, we’re featuring creative work from patients on their leukaemia diagnoses, as well as their experiences of shielding this year

Conversation with a Superhero: A very short story

By Sean Rourke

His eyes began watering as he turned into the wind over the common. It was a fair walk through the woods and round the back of the Manor. The heavy rain had made the ground slippy and some of the trees had boughs wrenched from their trunks. Nice to be alone and getting some exercise, though it was only a short-lived respite away from his caring responsibilities. Jennifer would be waiting, full of conversation but with little short-term memory and mobility; and a tendency to make a lot out of unessential detail. Passing the walled garden, he was tempted to pop in and see how his jostaberries were getting on. He enjoyed the adult learning course there and was now making a big effort with growing his own vegetables. He was at the stage when he was in awe of making anything grow well and whilst his home plot was quite small, it gave him enormous pleasure to heave nourishment from the soil.

“How are you doing today?” came the voice. It seemed to emanate from a copse close by, distant but insistent. He recognised its throaty tenor and was glad of its company. “Got plans?” He remembered it was a Tuesday. However, days had little to distinguish themselves these days. It seemed like life was a continuous cycle of care and attention that sucked imagination from his mind and made him entirely practical. He hated being praised for mending things when his real talents lay in things of a more aesthetic nature. Eventually, he replied, “I’ll have to pick the car up from the garage later, plan and prepare dinner, pick up Tom from school, wash up, tidy everything and maybe have a shower.” He was struck by the dullness of his routine and its complete lack of inspiration. He knew this was a dangerous time, a time when his thinking could be overwhelmed with negative feelings, reinforced by a desire for all tasks to be ticked off an epic list. It reminded him of the ascending staircase in the film “A Matter of Life and Death”. It did not help that he suffered from leukaemia and energy was always in critical short supply.

“Hang on a moment,” urged the voice, “are you not alive, with the pulsing world around you?” It was just then that he emerged from the woods and he caught sight of Hanging Wood rolling up ahead of him, Friesians grazing and Red Kites circling. It was true, he was alive but on the verge of forgetting his obligations to himself, again. Somehow, he always allowed obligation to obliterate his own desire to engage deeper thought, working things through, without interruption: his day needed intermittent resolutions that affirmed a purpose beyond keeping the spinning plates from falling.

He considered a reply that would reassure the voice, which often came out of nowhere to save the day. It was hard for him to narrow his thoughts as his mind was always in a state of confused business, continually reflecting on life moments and welcoming distractions, almost as if he wanted to avoid concentrating on anything at all. Concentration and sleep were commodities that he craved like a lover. How different things would be if his powers were overflowing and time was kind. Arbitrarily, he finally managed to blurt out, “I might go to the pub later.” It was a rather pathetic reply and contained an element of narcissism, which he confused with escapism. Hail, the sufferer! “As long as I get at least one important job done today then I am winning,” he continued. He couldn’t physically push himself too hard as there were consequences, ranging from severe cramping to listlessness, yet he instinctively wanted to keep moving forwards, as he was, right then, tranquilly amidst a sea of early bluebells.

Getting slightly out of breath, he pushed upwards to the brow of the valley where he paused and looked back. His nostrils were full of scent, earthy and fragrant, and he permitted himself a long-satisfied gasp of delight. The heady mix of landscape, quietude and perspiration were waking him up. He could feel his staleness ebbing and his body being lifted up, invigorated.

Precious Lives

By Gillian Tomlinson

Life feels rather fragile right now,
but life has always been fragile,
life will always be fragile.

Life is precious and will continue to be so,
precious to all,
to the individual,
to their family,
to their friends.

Life with or without cancer
is a journey.
At times the path ahead is rugged,
a tough climb,
even impassable in places.
But there are times too,
when we discover new places,
not always out of choice.
Places previously unexplored,
and we are surprised to find hidden gems.

With or without cancer
we will journey through these present trials.
We will journey together,
supporting and upholding one another,
each of us unique,
each of us fragile,
each of us precious,
each of us giving something of ourselves.

Missing You

By Joanne McQuitty

To those of you I can’t be near

The ones close to my heart

I want to let you know how much

You’re missed while we’re apart

I miss your laughter in my house

It’s quiet without you here

I miss just spending time with you

How you sometimes bend my ear

I miss the children running round

And messing up the floor

The place is far too tidy now

I couldn’t clean it anymore!

The rooms are far too empty

There’s no footsteps in the hall

I’m ready for my visitors

But they’re not allowed to call.

The memories and photos make me smile –

I smile a lot!

The rainbow in the window

Smiles above the flowerpot

And it tells me that the good times

Will surely come again

Then we’ll go out for our breakfast

Have a drink or two or ten!

We will hug and kiss and cuddle

How I’ve missed the joy of touch

Just to sit beside each other

I have yearned for that so much

To chat without a screen between

Without a pane of glass

Face to face, I just can’t wait

But I’ll have to wait, alas.

It takes a global virus

To make us realise that we’re blessed

We shouldn’t take for granted

Friends and family and the rest

When we finally get together

Let’s show how much we care

Let’s not leave it to another day

When there might be no one there.

My Day

By Anthony Cornwell

My day doesn’t have a beginning or an end
My day is not my friend
My day isn’t about looking my best
My day is struggling to put on a vest

My day is a constant battle in my head
My day is ‘come on, get out of bed’
My day isn’t a happy rise and shine
My day is a fight so you think I’m fine

My day writing a letter to resign
My day knowing those thoughts weren’t mine
My day is anger, frustration and regret
My day are ones I cannot forget

My day is breaking my family in two
My day is not knowing what to do
My day I know I’m not right
My day I don’t give a sh*te

My day is nearly always a grind
My day isn’t ‘come on just unwind’
My day keeps going on, on and on
My day what did I do wrong

My day is all about me
My day doesn’t allow for you, thou or thee
My day doesn’t have a beginning or an end
My day I really MUST mend.

Welfare benefits

We talk you through state benefits, eligibility and more. It's important to note that the purpose of this webpage is to give an overview of the benefits that may be relevant to you as a leukaemia patient. Speak to our Advocacy team for guidance on personal claims.

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