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Our dear Kes is organising a fun night out for MDS World Awareness Day

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Our Patron Kes Grant and her life saving sister are hosting a charity night for MDS UK on 19 Oct 2019 at The Newbridge Club.

Kes said to us:

My lovely little sister who donated her stem cells to me has decided to do a special fundraiser for MDS UK. She has booked a local social club for Sat 19 Oct 2019. It will be my 3 year re-birthday on 21 Oct as well as our World Awareness Day on the 25th.

I have managed to secure a couple of celebrities to host an auction. Jackie Jossa who was in Eastenders and her husband Dan Osborne from TOWIE and Celebrity Big Brother have agreed to come along on the night and gathered some great prizes to auction off. 

Kes Grant raising awareness of MDS at a local radio

Want a fun night out for a good cause?

Kes lives with the effects of  MDS, a rare blood cancer. Her sister Gail saved her life by donating stem cells.

They now want to raise money for MDS Patient Support Group, our small yet vital charity for those who have to live with this awful disease.

For a mere donation of £10 you will get free food, a free drink, great music and a celebrity hosted auction.  

Get in touch with the sisters to secure your place on the 19 of October at 7:00 pm at the Newbridge Club.  SE3 7HG, 

Send a private message to Kes on her Twitter account.

Don't miss the opportunity to meet Jackie Jossa and Dan Osborne!

The Newbridge Club at Blackheath

WORLD AWARENESS DAY SPORTING CHALLENGES: 19TH & 20TH OCTOBER 2019

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GREAT SPORTING EVENTS FOR MDS ON MDS WORLD AWARENESS DAY, 19th AND 20th OCTOBER 2019

Come and join our dear patron, CAITLIN LIMMER, on these great sporting challenges!

If you are interested in taking part, please contact us:

Telephone: 020 7733 7558

We are immensely grateful to Caitlin for organising these amazing events. A great opportunity to join efforts and raise awareness of MDS with the general public.

The funds raised will help to carry out our work, helping those affected by MDS, supporting them through illness, and campaigning with them for better treatments.

THANKS A MILLION TO ALL FRIENDS AND SPONSORS FOR THEIR GENEROSITY!!

MDS UK Patients’ Poems on MDS World Awareness Day

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The 25th of October is MDS World Awareness Day

Throughout the day, MDS UK and the international umbrella organisation MDS Alliance will posting on social media moving poems by our dear MDS UK member, Kate D, and other MDS UK members, written on the theme of living with Myelodysplastic Syndrome. 

I long for a cure one day

by Kes Grant

Myelo Dysplastic Syndrome the thief that stole my life
Myelo dysplastic syndrome my nemesis and daily strife.
The gift that keeps on giving from sepsis, fatigue and blood
To platelets, GCSF and transplants
I sometimes wonder how I’m stood
I long for a cure one day

Myelo dysplastic syndrome you have my body but not my spirit
I will strive, and wriggle and struggle,
my mind strong as I go through it
My family suffer as do my friends and that I really hate
Seeing the pain and worry on their faces as they wait to hear my fate
I long for a cure one day

 

 

Chemo and transplant offer a possible cure for some
You think all is well then GvHD comes along
Now my quality of life is poor and often rotten
I spend weeks and months feeling awful
Not wanting to hit rock bottom
I long for a cure one day

Strangely I can say it’s not always difficult and bad
People rally round and that makes me glad
I’m glad to be alive to see the grandkids grow
And I remind myself I’m still breathing when I feel low
Keep breathing Kes till they find that cure

My Day Starts

by Kate D.

My Day Starts as
Many Dawns Stretch
over the horizon
and beautify the sky
with shades of
Magenta, Damson and Sky-blue.

Then I remember –
My Disease Sits with me -
every day- not as comfy
as I’d like, but
My Dear Spouse
is there to support me
through appointments and
More Doctors’ Suggestions.

My Doctor States that
positivity is helpful
and that I must be
Mentally Determined to Survive.

I hear of others
Making Daily Strides.
Some wait for Marrow
to be Delivered Soon from
those Marrow Donor
Superheroes who enable us
to say that Many Do Survive.

More Delightful Sunshine
beckons; a world of warmth
in attitude. as virtual friends
support and encourage,
Many Dreams Surface,
hope is given;

May Dreams Succeed in
Assisting acceptance of
Our disease.

So, My Day Starts and
Perhaps My Daily Struggle,
With friendship and support
Means My Day is Sorted.

I’m alive, alive, alive.

By Chris Davis

I opened the door this morning and,
The garden was full of birds,
Birds singing, chirping, washing, flying, laughing,
They were in amongst the flowers,

The flowers of all colours alive with movement,
In the light breeze, as if dancing with the joy of life.
I looked up and the sky was blue, deep, deep blue,
With puffs of cloud floating, suspended, white,
Like giant cotton balls, always moving onwards.

 

 
The sun was smiling and so warm, yet,
Tempered by the light caressing movement of the wind,
The same light wind that gives life to the flowers,
The beautiful flowers.

I cried when I saw the birds.
I cried when I saw the sky,
I cried when I felt the sun and,
Was touched by the wind, and,
I cried when I when I saw and felt,
The sheer beauty of the flowers.

Then I looked at it all again,
And I cried out,
“It's good to be alive, to really be alive.”

7.35 to Waterloo

By Chris Davis

Squeaking along,
In a train full of meat,
Going to to London,
God knows who to meet,

No one is talking,
They are all on the phone,
They need that connection,
To prove they're not alone.

Friendship

By Kate D.

Friendship is my medication.
A hug, a look;
language that is not used
or known by those who
are not in the know;
caught up in the new
jargon that this
disease offers us.

My despicable cancer
has enabled new friendships,
renewed old and erased others.
Around coffee cups we sit,
or we walk and talk about…
all sorts; sometimes
cancer, sometimes not.

I am after all, a normal person
trying to accept what
has had to become
my new normality.

Heart and Soul

by Chris Davis

No, I don't believe we'll part,
Never, ever,
Ever you'll be my lover,
My shoulder when you suffer,
My soul is yours,
And yours is mine,
Even when we have no time,
And we lay together,
In peace forever.

 

 

 
On earth it was the the time to meet,
And find our love,
Is forever deep,
Enough to greet,
The final rest,
The final breath,
The final beat,
Within our breast.

Heavy Luggage

by Shareen Vouvray

I waited at the station with my little case on wheels,
I worried about lifting it because of the heaviness it feels,
Then the thought of you waiting patiently at another end,
I knew that I could do it and not disappoint a friend.

I waited at the airport with my iphone in my hand,
Not to take a photo because I wasn’t feeling grand,
My little case on wheels sat beside my chair,
My heart felt torn in two and I felt some despair,

Soaring through the sky I felt at peace with life,
Down below the toy town cars glinted in the strife,
Magic fairy lights all twinkled on the map of France,
As the airline staff started their aisle feeding dance.

 

 

I leave behind a piece of me each time I hug goodbye,
To my son, my two daughters, my grandchildren, how I cry,
One in London, one in Spain, one resides quite near,
But parting isn’t easy from the ones you hold so dear.

I waited on the ward for my treatment that is free,
With gratitude I wonder how they donated it for me,
We always take for granted all the things around us,
Until one day a wakeup calls us to a different bus.

Now each day is precious even though I am so tired,
I want to be an astronaut that never is retired,
I want to take my little case and visit every place,
It gives me hope to help me cope with a smile upon my face.

Watch and Wait

By David McIntosh

I’ve got Blood Cancer!
Don’t worry it’s just low risk
Only Watch and Wait

Invisible

By Kate D

“You look well” you say,
brackets, (“for someone with cancer.)
And I think,
“Do I?
Do I really?
Because I don’t feel well at all.”

Peel off my steroid mask,
The wig and the rosy drug induced glow,
And you will see pain
And sing a different tune.

If I wore a scarf on my head,
turban - style, had a plaster cast or a
walking stick,
You would know .

I haven’t.
So you don’t.
But let me reassure you,
if you could feel the pain in my joints,
shooting as a bullet does
minute by minute,
or worse,
suddenly
taking you unawares.

If you could feel
legs and arms like jelly
refusing to obey commands.

If you got stuck and
and had to phone
for help.

If you lost all your independence.
If you had all those things, then
you would know and never
say those words to anyone -
again.

How are you?

By Kate D

Do you really want to know how I am?
Are you interested in
how I’m feeling today,
yesterday and tomorrow?
Then be prepared to listen.
Not with a sideways tilt of your head
and a look of sympathy with
nodding accompaniment.
Not with “I know” or
“I knew someone who…”
“My mum/aunt/sister/ brother/
cat and dog…"

If you ask the question
It deserves investment;
Investment in time
to find out that, actually,
I’m not ok,
that life is rubbish.
That for me,
my life has been lived.
Are you prepared to find out
about my suicidal thoughts,
my pain, my anger and grief?
Or are you being polite and feeling that
you have to ask, that it’s the right thing
to say?
And the answer you want is,
“I’m fine” or “Ok”.

Today

By Kate D

Today I can
be in the sun
and absorb its warmth,
eyes shut ,
listening to everyday
sounds or
sit and read,
drink coffee;
being able to linger,
not gulp it down in haste
before the next thing
I must do.

I can bake scones,
watch the sunflowers
open their petals
to the early morning sun,
gently walk by the river and
listen to the breeze in the grasses,
the running of the water.

I can notice colours in flowers,
(in close up),
faded and bright
side by side, being
visited by bees and butterflies
who hover over the buddlia
dipping antennae into
the flowers one by one.

I can notice the patterns and shapes
of their wings,
see the shapes of the clouds and
watch as they shift
from white to grey.

I can take my time to
look at paintings in a house
nearby without rushing to be at
the next thing on my list.

I can do these things today.
Tomorrow, who knows?
But today I can.

scones

Have you?

By Chris Davis

Have you someone who loves you,
Waiting when you die?
Or will you be alone,
No one t!ovate, or cry.

Will you spend forever, without love,
And all alone?
Or someone who love you,
Making forever a happy home?

Have you spread your love around,
To the people who surround?
Or used your way through life,
Leaving pain or needless strife?

Today, have you told someone"I love you"
And held them in your arms,
And made them feel safe, warm,
Protected from life's harms

Hell is where the loveless go,
To rot through to the core,
But that is not for me, nor thee,
For our souls will love, forever more.

scones

A very first meeting of our new Kent Local Group on the 14th of October

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KENT REGION MDS SUPPORT GROUP MEETINGS

PATIENT-TO-PATIENT SUPPORT FOR THOSE AFFECTED BY MYELODYSPLASTIC SYNDROMES

A MEETING FOR COFFEE AND A CHAT

Come and join this growing and energetic group in this region. All local patients are welcome to attend, as are relatives and friends.
This is an opportunity to get to know one another, share experiences and increase the support network in the area.

This is also an important opportunity for newly-diagnosed patients to meet others who have been living with MDS for a while.
Thank you for making everyone welcome.

Date:              14th of October
Time:              16.30 pm – 18:30 pm - Tea and coffee will be served from 16.15
Location:       St. Dunstan’s Hall, 80 London Road, Canterbury, Kent, CT2 8LS

Agenda:

  • Initial Meeting Introductions
  • Q & A Session
  • Quality of Life Discussion – Patients and carers share their experience in dealing with the disease
  • Date of Next Meeting

Please feel free to suggest topics and themes that you would like to hear about - or speakers you have found helpful.
Please also consider giving a brief informal chat yourself about how you are dealing with MDS - what you have learnt, what has been helpful, what has been good to avoid as well.  This is incredibly useful information to share with others.

Carers/relatives/friends also particularly welcome to share their experience.  As an observer, you see things differently, you will contribute immensely to such a group meeting. You also have tips and advice - for patients, but also for fellow carers.
You need support too - it is sometimes not so easy.  Come and share what is helping you - and what's not so helpful.

If you have never contacted MDS UK, please contact the main office for a full Patient Information Pack before attending the Kent Support Group.

If you can, please tell us if you are coming – this will help us to plan refreshments

Andy Veitch: coordinator

MDS UK Main Office

Kentgroup@mdspatientsupport.org.uk

admin1@mdspatientsupport.org.uk

0207 733 7558

 

Kent meeting agenda
Free donations by shopping