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Day Hospice Blogger

Scott Duffy, a former day hospice patient, write the following entries in Spring 2009, about his time at the hopsice.

Episode 1 - first impressions

Hello. I’m Scott. I am 39 years old, married with three children, the youngest is just one. I have been visiting day hospice at The Prince of Wales Hospice for the last four months because I have a combination of life-threatening illnesses – an auto-immune condition and a blood disorder.

Before my diagnosis I was a very active person. I worked full time, attended the local gym and raised money for charities by running marathons.

Visiting the hospice for the first time was daunting for me, but what I found was so different from what I had expected. I wanted to share with you that first frightening visit. Poetry was certainly never my thing, but through the hospice I began to reflect and now this has become an outlet for me...

I came along on a winter’s day
The sun was strong, the clouds blew on
Nerves in my stomach for the meet
At 2 p.m. just off the street.

The Prince of Wales a hospice true
The deep dark thoughts of what they do
I’d asked around, Medi-Care, doctors, nurses
Bleak black stares

My wife and I arrived on time
The sliding doors, the toll bell chimes
A smiling face behind the desk
A bright surround, as spectrum best

‘Sign your name, take a pew
Maggie’s in; she’ll be here in two’

Through the door
A warm ‘hello’
Still nervous now
In my gut below

We took a tour around the place
Such low expectance put into place
A relaxing aura, a calm embrace
My stomach easing, my heart’s slow pace

The nurses, the doctors, the volunteers
All so helpful, also sincere
I will be coming back again
A place for me to meet new friends.

Episode 2 - complementary therapy

After my assessment I started coming to the hospice once a week – visiting day hospice each Tuesday from about 10am, staying until about 3pm when I have felt well enough. My poem below explains my first day and especially my experience of complementary therapies.

I started as a sceptic, but Maureen and Heather, the hospice’s therapists, have changed my mind completely and now it’s now one of the things I look forward to most each week Some of the therapies are not possible because of my condition, for example acupuncture would cause my skin to blister. But the others such as Reiki have proved really helpful. The experience I get is that I don’t need medication. Mentally I have a feeling of wellbeing. I’m relaxed instead of tense and uptight.

Once again this Tuesday I left the hospice relaxed and re-balanced. Thanks Maureen and Heather!    

Scott

Well back again, two weeks on
Same old weather, same old song.
Walk straight in, lots of smiles
“Through you go, we’ve read your file.”

“Take a seat, the kettle’s on
Tea or coffee?” Milk with two
Some new people, a whole new crew
More arrivals, nurses too.

“My name’s Maureen”, “I’m Anne-Marie”
“Biscuit with your cup of tea?”
Order lunch: starter, main,
some dessert before the games.

Complementary therapies “would you like to try?”
Quijong, reiki, foot massage, sink away and fly,
head massage, hand massage, aromatherapy too
hypno and acupuncture, to name but a few.

All designed to take away the stress of daily life,
put you in a better frame and make you feel nice.
They’ve changed my mind from sceptic with all this loving care,
volunteers and nurses, though the bad times they are there.

Episode 3 - the people

This week’s poem reflects the care and support provided by the hospice to patients and their carers.  My family and I are very thankful for all the support we have been given and do not take any of this for granted.

Scott

Sense of humour, listener, gentle disposition
communicator, supporter, everyday a mission
these are some qualities, not to name a few
volunteers 300 off, they give their time and view

Drivers, reflexologists, gardeners work the plot
admin teams to sign you in, kitchen staff its hot
lots of meals in a day they have to be delivered
veggie, vegan, religious views, they have to be considered

Without the shops and collection men the hospice couldn’t function
fundraisers raising cash, with Christa at the luncheon

Management, infrastructure meeting targets all
pressure to surpass, last years meagre, but brilliant haul
heads down, brainstorm, ideas large and small
we can, we will, we shall survive, we will stand straight and tall

nurses of all grades, RGNS, domestics
helping physically, mentally using all logistics
the tools are few and money short, they need a helping hand
so why not come and have a look and join our merry band

Episode 4 – Home life

Although my visits to the hospice are a blessing each week, home is where I spend most of my time.

Family are so important at times like these and I wanted to take this opportunity to thank them and to tell everyone reading how my family help me every day. I’m sure anyone else coping with a life-limiting illness would say the same – I don’t know how I would manage without my family.

Scott

The strongest ties, the strongest bond,
of my son, my daughters, I can’t be more fond.

Sammy who is 21, full of life, full of song,
Heather who is 17, likes the games to play along,

Fourteen months, a ball of fun,
Hamish now is on the run.
On speedy feet, his light-up shoes,
one day he'll make the headline news.

The lynch-pin of my family
my wife, my life, my angel x3

Rachel works from morn till night,
she really is my guiding light.
She's up at dawn and works till dark,
she never moans and never barks.

My mum and dad, so much thanks
for patience love, and that bike I crashed

My home life is a happy one,
I can’t do much but I still have fun.
I've only mentioned the certain few,
to all my family, thank you too.

Episode 5 – Artwork

For me the advantage of day hospice is having options of doing different things – go out in the garden, have therapies, have a chat with the other patients. It’s a benefit just to go out, take part and do something.

I’d never dreamt a couple of years ago I would be doing some of the things I’ve done at day hospice – especially the art therapy. I’m most proud of the cast I’ve done of my hand, which the nurses helped me get mounted on a beautiful wooden plaque with an inscription to my son, Hamish. It’s something meaningful for him when he is older. But that’s just one of the things I’ve discovered in my time at day hospice…

Scott

Well who’d have thought I’d have this streak,
to write these poems, to take this leap?
I’ve never done or attempted to,
I didn’t really have a clue.

This head of mine has changed a lot,
to grab the bull and take the shot.
Variety being the spice of life,
painting and sculpting release the strife.

I made a sculpting of my hand
and wrote a dit on a brass plaque band
It’s all about the virtues seven,
to make choices, a personal heaven

It’s Easter time, and egg time too,
the chocolate’s out and icing to do.
The eggs, donations from good souls,
to decorate and to roll.

I’ll carry on, trying new things,
reading, writing and even singing,
listening and learning from the staff,
Getting messy and having a laugh!

Episode 6 – The future

Desert Dash

Karl Banks ran the Marathon Des Sables for the Hospice in April 2009.  Here's his diary of his amazing adventure...

"Well that's it. Two years of training, countless tests of equipment and I'm pleased to say everything worked out great to make the Marathon des Sables a unique experience that was as tough as billed but great fun as well.

Heavy rain washed out the first camp so we spent a couple of extra days in hotels near the start. Given the conditions it was at one stage 50/50 if the event was going a head at all. The key thing for the organisers was vehicle access to all stages, the level of medical card out on course is second to none, with frequent checks to make sure you are okay and also to mark out the route.

After a delay of one day we went from the hotel. Straight to the first stage, 33 km, 18km of which would be over dunes. It was a strange feeling waking up in a cosy bed, breakfast and then out to harshness of the desert for a day that would test everyone. The dunes were enormous, the highest being 600 feet tall and the wet sand made for slow progress to the first check point. This was followed by a long rocky plain to the next checkpoint. From this checkpoint the route marking was poor, only 20 people kept to the route, which didn't include me. Late in the afternoon and up the wrong valley and alone I realised I was off route, but using the guide book the trusty compass I made my way to the last set of shorter dunes and found myself only a mile of course. A test not to panic, keep calm and get yourself out of trouble.

Day 2 was a 36km triangular route back to the first nights camp. Most of the morning was over what was classed as dunettes, small dunes but still sand, to the first checkpoint. From here a long rocky plain and climb over some hills then up another valley took us to checkpoint two. Another walk along a rocky plain and short trip through day one's dunes finished off the day.

Day 3/4 was the long stage. Normally 80km but because of a forecast storm on the last day they decided to add this distance onto the long stage. We had to reach checkpoint four in 16 hours at 50km or you would be out of the race. That was my objective for the day. Through flooded wheat fields, passing the only road/town for the week and across more small dunes and rolling hills, I kept pushing on to reach the checkpoint. After the third one at 6pm we had only one hour of daylight left, so it was time for the torches and hope that the route planners had put out the glow sticks on the markers! Night falls quick in the desert and the last hour to the checkpoint was my lowest moment. Tired, hungry, tripping over and getting scratched in the dark I reached the fourth check point at 9pm and fell to my feet. Time to eat, drink and sleep for a few hours.

At 4am I left the checkpoint and headed off to the darkest night you can think of, but under a glorious night sky with the Milky Way in view. Dawn broke at 5am and after a climb over a mountain ridge I witnessed a view which was breathtaking in the early light. This stage went on into more dunes were navigation as key again and onwards to checkpoint five. From five to six given I was well down the field I didn't see anyone for hours as I walked up a rough valley. The final stage from six onwards was done in the midday heat and humidity. I was glad to reach camp and recharge. The greeting from fellow runners and staff added a bounce to my step, the long struggles quickly forgotten

Day 5, my first and last marathon. A stage which through at us mountain passes and plains to checkpoint one. Dunes and mountain climbs again to two. Two to three varied from firm flat going to a final dune section. Three to four went past, of all things, a small reservoir through which we had to wade. Wet feet for the final stretch, to a mountain pass and a moment that will stay with me forever…

Going over a mountain ridge, you got to see the finish, a distance away but a view that gave you a boost, all the days of struggle were at an end and as if to stress this the sunset as I went over line which seemed to close the race well for me. Crossing the line, well wow! Highly emotional as I got the medal and supporting hug off the staff. Time for a beer!

What an experience! You find your limits and exceed them and drive yourself onwards. Eating well, keeping hydrated and looking after my feet helped me physically, the support from everyone at home carried me mentally especially at the low points."