Showing posts with label hope. Show all posts
Showing posts with label hope. Show all posts

Friday, 3 September 2010

Reading PATIENCE x 2

Responses to our forthcoming publication PATIENCE, a collection of art and poetry by older people in hospital.

I love the fact that your work nurtures older people and dignifies their experiences within the context of an environment that conspires to be demeaning and perhaps dispiriting. I especially appreciate the contrast of individual voices on found packaging such as medicine boxes - items which could assume disproportionate importance within a hospital or care home. Placing words and testimony on medicine packets, especially words that are so cheeky, wise and poignant, make me laugh, and smile, and cry.

(Penny Anderson, Journalist)


As a piece of work itself I think it has a real simplicity and tenderness that opens something very ordinary and yet profound in the reader. It makes you care, and makes you think for a little longer about these experiences and what they mean, to you and to them and to all of us.

(Amanda Kilroy, Medical Researcher)

Thursday, 3 June 2010

Pain and care

I think, correctly, people will find expressions of pain uncomfortable for the person whose hearing it, so that they don’t… maybe their protecting the audience. It’s a lack of faith, that people can deal with other people’s pain.

(some people will talk about nothing else but their pain/condition..)

That’s what I mean about support groups, letting something absolutely and totally dominate your life. Which allows that thing to define you.

A sense of humour is terribly important. It’s true that people mitigate difficult conversations with humour, and it may not be appropriate if their not in that place. I would say I have a pretty strong sense of humour and that helps.

I do believe in being upfront about whatever’s going on, and you’ve found that then promotes others to talk themselves. Maybe its having been in the caring profession, it’s no good hiding things. By bringing something out it makes things easier to cope with- that’s the function of art isn’t it?

(some peoples personality, you warm to and want to care.. I was thinking about Mary Hartin, she could hardly communicate with words, and yet you just wanted to be with her)

She was a very open person a very giving person.

(I imagine as a carer it would be very easy to care for her)

definitely

(in our sessions, she was life and soul, even though she had so few words, her body, her eyes her face communicated so much.)

Primo Levi had this concept, of hope, that he believed people survived the concentration camps because they maintained a sense of hope.

People have felt about the American positive thinking, about how you deal with cancer- leads you to either feeling if your not surviving as it where, then you are somehow guilty because you haven’t led a decent life, or you’re not thinking in the right way.

(putting the blame on the person, rather than the condition)

That somehow you can find this magic formula in life, and going to live forever…It puts a blind fold across you, shutters up. Being tested is interesting, living is interesting- so will dying be I imagine.


Alison Creed in conversation


Saturday, 20 March 2010

my message is to you


hope is your life
together we
hope
each looks after each
friendly nurses speak
look for
hope is swift exchange
my tablets my routine
hope for this
take pills like new ideas

swallow
hope
I listen to children’s advice
swallow’s wings
get on with life’s hour
accept
strokes hearts bowels propaganda
each other
what journey you’re facing
and what hope

do you get?
(would you like to join our discussion?)
everyone’s lonely in their own
true journey
hope is swift
can’t take it out
can’t shove it away
we’re all
in the end
swallow’s wings.

Group
Cherry Tree Hospital
2009

Monday, 8 March 2010

Life events (and difficulties)

Recently I had a wonderful opportunity to interview Alison Creed. Alison has a background in medicine and the arts and unique personal insider experience of the following health conditions:


Cancer, osteoarthritis and hip replacements

I don’t define myself by that one episode of illness. I’m aware meeting people who were being treated that they could see this was going to dominate their future, beyond their recovery. I have just reached over 5 years since my recovery, which is supposed to be some sort of milestone. With different cancers you get into different statistics about chances of survival.

I am aware things can happen just out of the blue. At the age of 21 I was in a car with my parents going to see my brother. We were in a very bad car accident, from which my parents ultimately both died. So I’m aware, things happen, that’s my attitude. And cancer is just one thing that can happen. You have to deal with things as they come along. Life goes on.

I think some people have a lot of luck and some a lot of misfortune. This feeds into life - how people approach things. I think there are people who are born optimists; I believe in nature not just nurture, but I don’t think it’s a static thing.

There have been debates recently around positive thinking.

Going for treatment for cancer, I was really sick, nauseated and sick. I know if I had a recurrence, I would want to be able to say no, I don’t want to go on with treatment. It’s important for people to talk about death and dying. The modern concept of a good death is like the ‘think positive’, like you can control everything - but you can’t. Things happen out of the blue.

Cancer wasn’t spoken about at all; it’s changed; it’s much easier to talk about it now.

I’ve had my two more recent episodes of what people may call ill health - episodes with osteoarthritis which led to hip replacements. This is speculation, but do people focus so much on cancer as it happens throughout adulthood? whereas people have a concept of age appropriate ill health...(like arthritis) Now you can hope that a hip replacement may last you up to 20 years or more.

The genetics of it: my grandmother died when I was three of breast cancer, and my sister had it when she was 38. There are different sorts, we have no idea what sort my grandmother had, and my sister and mine were different, but the geneticist suggests that our daughters from their mid 30s onwards, do have mammograms regularly.

When you have been in medicine, you can think of umpteen things that are worse.

Cancer, I was told it takes a year out of your life for the cancer and the treatment thereof, I would say that’s absolutely accurate. People’s approach to things differs; with radiotherapy, some see it as causing them lots of difficulties. For me it was a doddle – it’s just how your body reacts to things.

I would say I didn’t have any pain, the only thing was being sick. The thing that people fear, which causes the dread about it, is the fear of pain. In particular the bone secondaries create a tremendous lot of pain. People fear not being able to cope with it and unfortunately have seen relatives go through this and not have their pain controlled adequately. For some people it’s their own pain of losing their relatives, or seeing them in distress, that’s projected onto the patient. With the hospice movement, people ought not to be in pain. It can be controlled, unfortunately there aren’t enough people skilled enough in pain control, so it’s a legitimate fear. Certain cancers tend to have certain types of secondaries, early diagnosis is very important. Certain cancers, such as melanomas though, pretty much as soon as they are spotted, they have invaded.

The whole language is loaded. Its interesting in obituaries they talk of battles, sometimes I think its not what the patient might have felt, sometimes it’s the relatives’ battle with their own pain, what they’ve seen of suffering or preparing for loss.

(Lois: “I understand that for a lot of women, the loss of a breast, can be worse than the cancer itself”)

The alteration of body image, a physical removal of parts of your body, or with Chemo, the loss of hair. For myself I wondered how I would approach it, I had extremely long hair, it was part of my body image - so I prepared myself by having it cut short. It was a practical thing too, as to have great long strands of it falling out is highly inconvenient. As for the mastectomy business, I have never gone along with this increasing single focus on the breast in western society as sexual rather than also functional, as mammary organs. As it was, I didn’t have to have a mastectomy, I had a surgeon who was very concerned about the aesthetics thereof, but to me it didn’t matter at all. There is the aspect of your partner’s approach to it, you can’t divorce that from it. I didn’t find the hair loss difficult, and the short hairstyle I’ve kept afterwards, people said it took 10 years off me!

There are a whole lot of support networks if you wish to access them, I have never used them due to my own attitude to ill health, I don’t see it as a dominant thing in my life.

It’s much easier to have the cancer yourself, than to see someone else with it.

It’s interesting the part faith might play in peoples approach to it, I regard myself as an atheist. When I was being treated for cancer, people in the village would say, ‘I’ll pray for you’ and that’s a nice expression from some people, its giving a sort of gift in their terms.

With cancer, you see people alter in front of your eyes, weight loss and so on.

I had a useful tip from another patient, pins and needles in your feet - a side effect that you might keep after recovery. I have numbness in my toes, but how important is that? There are practical tips, but I know from the caring profession, you don’t tell everything as then people will feel it, whereas before perhaps they wouldn’t - a placebo effect, but the other way round.

I was very lucky being treated at Christies- who have the expertise. I had an oncologist, who was a fantastic researcher, but who had zero bedside manner. In terms of support there were two breast cancer nurses and they were fantastic. But I’m not backward in accessing what’s there, and would go out and look for it.

I was a classic case of being picked up by routine mammogram. When I got the letter for a recall - I knew and found it straight away.

Interview between Lois Blackburn and Alison Creed Feb 2010

Thursday, 4 March 2010

night pains



I feel tight

feel clempt closed

always thinking trying

nighttime terror couldn’t tell you

a bit of a trouble-ful night

pains


hospital comforts: the beds are alright

the nurses are alright

the specialist said, “I can operate but…”


furious winter is in our stars


all the time many a time

I m always trying to look up

a-wondering what

to think of life itself

a bit of a trouble-ful night

pains


they do damn good work

specialist saved my legs for me

he was practically dancing


hope is a lot of things


group

Cherry Tree

2007

Sunday, 21 February 2010

wheelchair



walking

an outlook

an outlet

your body don’t dilly dally

does what you tell


marbles on the way to school

for a long way flick it through

play for each others’ cowboys and indians

late at night

in the fields around farms

make dens of

long-seeming summers

in the 1940s


the first

thing is

to keep

little things adding

to a bigger step


on the fringe of farmed fields

bounded by the Mersey

we’d walk over the iron bridge

time working horses

the river a-flooded with ducks and geese

it’s all we had

kids walking the road home

was better frittered


what’s so good about sitting down?

if you’re going

for a walk

get your shoes and

go



Group

Cherry Tree 2009

Monday, 8 February 2010

notable dates (a Kingdom)

my mind to me a Kingdom
has come to me in illness
in sickness
in my body
my mind
*
isn’t captivated
not shut in
here, but let’s face it
could be by the sea
walking on pebbles or moors in Yorkshire
surrounded by moors in happiness or anger
my mind is a Kingdom
although you’re in
*
the ward you
can take yourself out any time
some learn to live with poverty or riches
some with illness

if you suffer for very long
have to say: not going under

count your blessings one by one one by one by one

(a Kingdom: I like to think I’m by the prom
the noise of the pebbles
one by one by one)

***

you get an affliction
get very resentful
have to adapt to
ageing
those beech leaves just turning red
*
a body case
*
can’t case your mind
you adapt
see someone a lot worse
live with your limitations
when you’re in a lot of pain
teaches you something
teaches patience
*

Queenie Wall, Catherine Cannon, Irene Corringan, Mary Hulme
November 2008

Thursday, 28 January 2010

migraine



fortnight this time
few times before
me head
very bad heads
suffered from migraines all my life
when the change came
I’m left with

take them as part of life
only you can do it
nobody else can help
take my mind of it
find something to take my mind
plenty of people worse of than me
would swap places
life’s ups and down
money doesn’t come into it
live your life to the full
say to myself people have the same problems
they get over it
have to do the same

pain I know its there
try and shut it away as much as I can
plenty worse
migraines for years
say to myself there’s another one
will go eventually

bad bump when I was a little girl
set them off
got to master it
up to you how you deal with it
walk around with a morbid face
that doesn’t help
people go around like it’s the
end of the world
that doesn’t help

when its coming on think
oh not again
nearly all my head
starts at the front goes around the back
severe pain
go on with it
not a lot you can do until it goes
dull headache
an hour
sometimes one eye goes
know one is coming
just deteriorates
then its gone
the Lord did hear me
let me have a good nights sleep

get mythered about things
get one
have to stop mythering
not to worry

pray to the Lord at night
please free me of this pain
more or less help me
grin and bare it till it went
really feel ill
no way out of it
ask Him to take me many times
but He said no you’ll get over it


determined to get there
nobodies going to stop me

Marjorie Rayner
October 2008


Photo Marjorie Rayner © Lois Blackburn 2009

paracetemol soup




love
(what’s wrong with it?) can’t do without
home
the most important place
(love when I think of home)
love it’s true I daren’t say it
the bank writing me love letters
security, savings, minus, plus
my dad singing over the rainbow
throwing coins in the air
noisy
movement
my brother is bent double with arthritis
I am an expert in pain disabled incurable
backache we’ve all got it why haven’t you?
you’ve got to drink gallons and gallons of
paracetemol soup
we’ve all got it like income tax
there’s no escape
bloody hell, miracles
luck
love


Louis Marx, Margot Blake, Gloria Ordman
October 2007

Photo © Lois Blackburn 2008

pills by the bucketful



day by day
the red plague
hope the next will be a little bit better
pain
had so long
childhood
a great thing when you can jump out of
the body

prison:

fight against time
it will come nevertheless
can't move like I used to
must be something stopping me
cope
cant do anything else
hope and pray for a cure
heat or cold
or drugs or whatever
tormenting irritation
can apply
pass the parcel of things

headline: mind can conquer body
make the most of what
little we’ve got
know we’re not going to improve
an acre of barren land
go on day by day
best to think about other things
yellow sand
and hope for
pills by the bucketful


5th Dec 2009
Group

Thursday, 20 August 2009

War and peace

"I was five when the war broke. A little nipper. Remember the bombs coming over and the black curtains. Burning candles. And much later, I remember this man coming out of the dancehall. Shouting, 'The war's over!' and dancing in the street."

On Friday morning I sat with Norah, Helen, Dorothy, Freida, Mary and Angela in the rehab ward at Cherry Tree Hospital. I asked them about the big war they'd lived through - the 1939 war - if the struggle of simply getting through it had prepared them for the struggle back to health now?

"You've got to get on with it, or slip behind. It makes you harder. You look after yourself, you're not baby-ish like, crying all the time. You're hard, strong I should say. You don't notice at the time, but it comes later. You think about it, see it in your mind."

Did that experience shape your experience of hospital?

"Yes, it's part of life. It's hard but you've got to get on with it."

Did it prepare you for hospital?

"You're never ready for hospital. Not if you've been healthy before. You're not the same as you were. It's change. Suddenly you find yourself in hospital in terrible pain. Some people get upset, some feel it deeply, some accept it easier. Different temperaments. The ones who accept change, the ones who fight it."

And what would you say to someone in that position.

"It does pass in time, it does. IT DOES PASS."

Friday, 26 June 2009

the jargon

Below is the poem we made with the group 'talking heads' at Walthew House. Walthew House http://www.walthewhouse.org.uk is an independent local charity supporting people in Stockport who are blind, visually impaired, Deaf or hard of hearing or who have dual sensory loss. We were made very welcome by the group, I learnt lots and look forward to hearing about the next session with the group (I'll be of on my maternity leave by then!)


the jargon

terminology:
I’m registered blind

the word blind is very final
people
get embarrassed by words
but I’ve always faced the world
blind
eyes of bone

some boys kicked
the stick out of my hand, said
“Now go look for it,” said
unacceptable words, not-PC
always interested me, the words
I am totally blind
a spade’s a spade
an indicator cane
a symbol
a guide cane to
measure from your foot to your breastbone

go through a grieving
lost vision
lost independence
grieving
lightsudden flewbird
go through a long time
the bitter twist fills a void
Blind Beggarman Pew always
bringing the black spot

language, jargon:
visually impaired

how small my disability
from the foot
to the top of the heart-bone
born blind:
went to schools for the blind
the sunshine homes
colours mix with words for me
anger with red traffic lights
what you can see and what I can’t is

I don’t get any older
in the shaving mirror.

Thursday, 28 May 2009

thistle in may

it’s a slow process all the flowers waking
caution restricts the tulip field
snowdrops the first
the trees blessing daffodils
the light, a relief
a relief (the darling)
comes slowly
you squirm: God, I’m coming to life
seize the sun
the sky-blue, the buttercup
take your part in the human race
attend all your check-ups
cut a thistle in May
the dancing season has started
little flowers pink and jump
blooms as big as cabbageheads
(follow all dietary recommendations)
cut it in June
it’ll be back soon

speak poem
February 2009

Further info, from Better Health Channel website, Victorian Department of Human Services, Australia
During convalescence, it may be beneficial to set goals for each day which will aid in your recovery. Be guided by your doctor, but general suggestions include:

* Too much bed rest in most cases isn't good for you, particularly if you are elderly. Maintain some level of activity, even if it means just sitting or standing up occasionally. Try getting dressed and moving around the house if possible.
* Ensure your muscles, heart and lungs are working efficiently by gradually increasing your level of activity each day.
* Make sure you get enough rest. Listen to your body and alternate periods of activity with periods of relaxation. Be prepared to say 'no' to things you can't cope with and visitors you don't want to see.
* Keep in touch with family and friends and maintain your social activity, even by telephone.
* Eat a healthy diet that includes plenty of fresh fruit and vegetables. If your appetite is poor, try eating small amounts of nutritious foods regularly. Remember that eating well is more important than eating more.
* As your strength returns, find time to do things you enjoy. Keep up with hobbies and aim to get out of the house regularly, even for short outings.