"A Power Within"

Now published and for sale: details of how to purchase this beautiful book on-line http://www.susiehemingway.com/books/ - A continuous journal in diary form, telling our story in poems of love - Proceeds to Multiple Myeloma.

A Power Within Now Available to Purchase On-Line

Link here http://www.susiehemingway.com/books/ to purchase this richly designed poetry anthology filled with Poems of Love in diary form. More than one hundred pages telling ‘our story’ Proceeds to Multiple Myeloma.

November - As We Remember Them by Susie Hemingway

As curled and furled wet leaves do fall
across this windswept land,
last scattered reds and golds hang fast
in watery sun that dares to last
as skeleton bare and bleak the trees appear,
‘tis the wanting colour of November.

Morning mists cover low this land
greying hedgerows this fence of bushes
relinquish their fruits, no turning back
no change no gain, not for a few months now
as life withdraws into a silent land,
‘tis November this month of in-betweens.

Quiet sleepy days of warm rugs as chilly
winds blow to change our land,
sweet smoky wood embers tinge the air
the cattle stand in bare pastures
with forlorn faces that appear to stare,
not for them the sunlit fields of warmth.

For it is the mellow days of closing year
dusky, misty, woody, crispy early frosts,
a time of pause, of waiting for the carol sounds.

This eleventh month, this middle child,
not one season or another, but surely to be savoured?
‘tis November…not to be rushed.

All Rights Reserved.

How Exciting.

Later this month my poems are to be published in a book called “A Power Within” It is pleasing to see more than fifty of these poems of love, all together in a beautiful book with it’s rich coloured cover - not I might add, the beautiful photo I leave here for your delight today -and 105 pages, which would look beautiful adorning any coffee table. I am thrilled with the result of the proof and with the superb layout done by Matt Rutherford of http://www.mattrutherford.com/ thank you Matt. More news on the release date will be here later this month.

~ Sunset Photo courtesy of Colin Brown – All Rights Reserved ~

It Shines For You - by Susie Hemingway.

Silver shimmering crest of light

that shines and glistens on special nights

but only seen by those who love,

for those who notice this moon above

fluorescing glow of softest light

that shines on waves in rolling flight,

this secret candescent light that holds

a special place in lover's souls,

when the flotsam of life is tearing at you

lift your head and see this view.

When life's foreboding ways do seek

to sometimes knock you off your feet

take your dreams and shake them loose

never stumble for you will see

this shining luminosity of moonlight free,

for on these magic nights of love

that glow for lovers from above

especially for those entwined souls
for secrets between them never told

tilt your head to gaze above

to see this gemlike moon of love...

Photo courtesy of Sally Leeves

All rights reserved @ SusieHemingway 2009

"I Carry Thee" - by Susie Hemingway.

I carry thee like the heavy rain drenched leaves cover the precious plants
I carry thee like the mother with soft-fleshed babe in arms
I carry thee on heavy days, when limbs are tired but heart is willing
I carry thee.
I think for you on difficult days when drug filled mind is fuddled and quiet
I think ahead for you with heavy heart filled with anxious thoughts of decisions that must be made
I think of you when struggles to move are hard and bones make creaks and eyes are dulled
I think of you.
I watch for you, I listen to your breathing, when night has fallen and stillness comes
I watch for you with hope you never stumble or fall
I watch for you to make that kiss you love, entirely right at night
I watch for you.
I dream for you that days will pass pain free and be filled with God’s blessings
I dream for you when watching Autumn leaves fall as trees again show their tangled limbs.
I dream for you that you will see the Summer sun, rise across the pastures green once more

I carry thee....

@ Copyright 2009

Photo Courtesy of Janey Johnson Photos: All Rights Reserved

~ Secrets Of The Soul - by Susie Hemingway ~ *

In purple see the changing light
the stormy days to passive nights,
in secrets of the soul display
a campaign like tinders falls astray,
and yet, as seasons daily change
you adjust to fight on moving range.
In repetition all a part
this set-piece for you
that's learnt by heart.

I watch thee, I watch thee,
intrepid, fearless
and monumentally brave,
to eagerly face another day,
this gargantuan task,
in febrile waves you make,
the tiny steps you sweetly take.
This rape upon your ravished frame
comes back in haunting waves again,
this personal onslaught so powerfully dealt
in secrets of the soul displayed,
the campaign like tinders falls astray.

And yet in courage you edify
and make my heart to often cry...


*This Poem written in 2008 has been chosen this week, to be included in a new book of poetry called "Fact and Fantasy" by UK Poets, copies of which can be purchased from all good bookshops and also read through The British Library.


@Copyright 2008
All Rights reserved

Two Years Since Stem Cell Transplant

Two Years Since Stem Cell Transplant.

On the 8th of October it was the two year anniversary of Hamada’s Stem Cell Transplant. We once again thank Prof. N. Russell and his wonderful team at Nottingham’s "Centre of Clinical Haematology" for their expertise and for securing these past two years for Hamada. We continue with joy at each given day and try to make everyday as special as we possibly can. Although many testing times have occurred during these past two years with many health issues. Hamada has quietly and with great dignity, gently taken great enjoyment at each day with his family. He never ever complains and deals with this most difficult illness with great courage.
In celebration I post here Hamada’s favourite Poem, apart from mine! (I’m jesting of course)

From the Springtime of Love by Khalil Gibran.

Love has no other desire but to fulfil itself.
But if you love and must needs have desires, let these be your desires:
To melt and be like a running brook that sings its melody to the night.
To know the pain of too much tenderness.
To be wounded by your own understanding of love;
And to bleed willingly and joyfully.
To wake at dawn with a winged heart and give thanks for another day of loving:
To rest at the noon hour and meditate love’s ecstasy;
To return home at eventide with gratitude;
And then to sleep with a prayer for the beloved in your heart and a song of praise upon your lips.

Khalil Gibran 1883 – 1931

Photo by Susie . Rights Reserved - 2009.

This Sunset - by Susie Hemingway

Brilliant Sunset sinking fast
of pumpkin corals and scarlet reds,
slowly first, as watchful eyes
dream and melt in paradise.
We turn to stare at coloured sky
and watch graceful bird swooping by,
we listen to the palm trees sway
as sun kissed bodies feel close of day,
evening warmth on cooling skin
pleasures seem to merge within.


Sinking slowly, small cirrus streaks
enhance this beauty we love to seek.
Vermilion Ambers, Magenta hues
spectacular colours for me and you,
gentle sounds of ebbing waves
this rhythm and flow of life and days...
Why we seek this twilight sky?
this energy that makes us sigh,
that makes our shoulders rest this way
that always takes our stress away.


This colour of power, this colour of
might, this reason to live, this reason
to fight,
this Sunset watched with only you
delicious memories come into view.





With many thanks to Sandy Banks*
http://www.retiredforgood.blogspot.com/ for allowing me to use these very beautiful photos and for dedicating the lower rather special Sunset Photo to us both.* All rights reserved.

*Sandy said... Your poem prompted me to gift those precious moments as the sun slips down behind the mountain and sea - caught, but not stopped - to you and your beloved... I love your words that bring the essence of a season or a moment into very sharp focus. Thank you again....
All Rights Reserved@ October 2009

Update October 2009

As all tests were returned or done last week, we were seen very quickly at the Haematology in Lincoln Hospital yesterday. This appears to help save time for the Consultant with his study of blood results and checks of readings etc and although this involves two journeys, quite long ones for us. It is more preferable than the normal long waiting time for results to come through from the labs. Having found an improvement here, now for the big moan. The rather small car park for the disabled which is nearer the department, was completely full once again( that is sad in itself) After driving round for a while I had to concede, that the only place I could find, was miles away from the clinic we needed to attend. Struggling with the wheelchair in and out of the car is one thing. I am very physically fit but still it was most challenging for someone in their sixties to then push up the long hill leading to the Haematology department and certainly impossible for someone a little less stronger than I! It often appears strange to me, that the clinic where people have the most needs, is the furthest away! Very bad planning indeed, I suppose I could have weaved my way through all the miles of hospital corridors and up lifts but even my legs get tired sometimes! No wonder so many frail or unfit people have to rely on transport to and from their appointments, costing a great deal more with escorts in and out, than it would cost to make more disabled parking spaces - ah! I feel much better now for that wee moan.

All readings were much the same - very little change on all counts, except the dreaded para-protein (M-spike) which continues to climb and now at 13.09. Still,the consultants considered opinion, is that as Hamada is continuing well with no more pain than is usual for him and his Kidneys are holding well, that with all things considered, he should still not start Velcade yet and enjoy this respite, we are to return in December. The Doctor says to enjoy this good quality time and we intend to do just that!

Next week on the 8th of October it will be two years since Hamada's Stem Cell Transplant and we once again thank Prof N Russell and his wonderful team at Nottingham's "Centre of Clinical Haematology" for their expertise and for securing these past two years for Hamada. We continue with joy at each given day and try to make everyday as special as we possibly can.

*The above Photo was taken On September 26 2009

Autumn Lady by Susie Hemingway

She came rushing in, or though it seemed to me,
disbelief that this colourful Lady with her cloak of reds and golds
had already arrived, when I glanced from my window.
I must have been looking the other way!
but then we don’t count the days pursuing more important matters now…
As the relentless stricken battle appears once more on the horizon,
had she come to distract my mind or bring colours to my heart?


This feckless stunning Lady who sheds her clothes
and scatters them where she will,
like drops of tears in a template of sadness perhaps?
A powerful change of authority as restless and now incipient to decay.
Old roses fade and fall like shattered fragments of glass
from a precious mirror,
the hedgerows become bare, no more luscious berries
but still holding onto their thin strips of life.


Leaves, could they ever be more beautiful?
turning to deep maroons and burnished, glinting, jewelled colours.
Conkers appearing from their secret shells to fall in copper splendour
from the impressive stately Horse Chestnut trees.
We arrived, like we had just opened our eyes.


Another Autumn! who would have believed we would see this majestic
Lady together, dumbstruck once more at her beauty
but belligerently waging war on staying in our perfect peaceful Summer…
not for us, the rushing of time…




All Rights Reserved.

I Missed You - by Susie Hemingway

I missed you, when the heated rhythm of Salsa
- that feels so like chillies when they touch
your tongue - drifted across the dance floor.
I missed you as this enticing music reached
my jewelled pinned ears.


Where were you? when the luscious sounds of
Sax blues, caught my needy toes
so carefully encased in high dancing shoes.
Where were those slim ‘sun touched’ hands that would
reach to twirl me to the dance floor.


Where was the graceful dancer, whose gentle persuasion
could spin me like a whirlpool, making me turn
and sway to the sounds of Latin beats and Bluesy tones.
Tell me, where were those magical eyes,
those sparkling rays of light, that always laughed with me.


Where was that smile, those breathy movements on the
dance floor, those feet that could glide and coax
the dancer from my soul…
How my heart wants to dance with you once more,
instead of standing alone when the music calls to me.


I watched the others spin and whirl but my arms were empty,
sadness for your charms that made me feel like sixteen again.
I was never a wallflower but she has found me now,
where were you… when the deliciously heated sound of Salsa
reached my ears… where were you?


@ Copyright 2009 Susie Hemingway.

Photo Susie and Hamada –Alex 1986.

Wallflower Photo: courtesy of Janey Johnson- All Rights Reserved

*This Poem Although Written About My Husband Hamada, Was Posted On The Day Patrick Swazey Died Of Pancreatic Cancer. Patrick was a wonderful dancer bringing much pleasure to many ladies who saw him in the enchanting film “Dirty Dancing” So I dedicate this poem to Patrick-may you continue to dance in Heaven- and to all lovers of dancing"

"It Was A Comforting Day" - Susie Hemingway

“It was a comforting day” you said
skies of blue, white vapoury
scudding clouds lifting the
shimmering colourful kites
to the heavens in breezy skitsy way,
I followed your eyes
I tried to see your soul,
in quiet reverie as no one knows
the heart that pushes down the pain
in a day affirmative that popped
like champagne.

Laughter surrounds you
consuming and capturing this
mere moment but for you a life
so difficult and as fragile
as the bubbles in my glass,
breathe my love, live in mind forever
this sun warmed golden day
of perpetual joy,
paint these brushstrokes
on your heart, for life is now,
this time is ours
as precious and as beautiful
as the stunning mosaic sky.


My cares fluttered like the
swooping of the Kites
free and belonging to the skies,
intrinsic as the white opal swirls of the clouds
tossing my sadness into the wind
so carrying us forward with courage
to yet another day
refreshed and replenished
you glanced at me,
in soft light fading...it was a comforting day.


Copyright@Susie Hemingway 2009.
Photo courtesy of Matt Rutherford.

This poem is dedicated to Dianne and Vern West, Nevada, Arkansas USA
for their courage.

"Calm Are The Seas" - by Susie Hemingway.

Calm are the seas we travel now,
the sail is down
how tranquil is the ocean,
we drift past the deserted islands
with their scattered palms and
fallen coconuts,
we lay on the deck, with bronzed
skin and salty mouths
calm are our seas,
the soft magnolia smell of warm breezes
whispers through our hair
all is blue, placid and serene,
I am here with you, for once
essential as the mainstay
Calm are our Seas...

Photo: Personal Oil Painting - somewhere special in Oman.
* N.B. See Comments for Dedication.

@ Copyright Susie Hemingway 2009

It's Strange How You Know!

Its' strange how you know as soon as the consultant says "please have a seat" Some how you sense this is not going to go the way you so wish it would. Even chatting to the very pretty receptionist whom we have come to know over these years did nothing to allay my fears. Although Hamada had his bloods taken very quickly on arriving at Haematology yesterday and the waiting for the results was really very short indeed. I found it so difficult to sit patiently and concentrate on anything. Hamada always sits so calmly and yesterday buried his head in an interesting 'Flight' magazine. I nearly always listen to something calming on my ipod or read, but yesterday found myself reading the same line over and over again, being an avid reader this is not something that normally happens to me I 'drink' words as fast as I can. For me these consultations get more difficult as the months go by. Well a couple of results had not change too much - we are grateful for anything good! - the Haemoglobin was a little lower at 10.1 the Bence Jones was pretty level on last time results at 0.04 and the platelets had even risen a bit to 51. Then doom hits you like a weight sitting on your chest, the not so good... White Cell count now at the lower 1.5 and the Neutrophils at a very poor 0.72! and the dreaded Para.Protein*(M.Spike) is now at an alarming 10.7 !!

We discussed again with the Doctor what plan of action would be next and how far we should allow the Para Protein to rise, before the next battle begins. This depending now on a second Para Protein test done again yesterday,checking and double checking.

The Doctor stills feels Hamada should hold out longer, as he seems well enough in every other respect, some pain in left shoulder, back when moving and Oh! so VERY weary. So the figure of P.P. (M Spike) at 20, was thought to be the bench-mark for Hamada to start with Velcade. This figure of 20 seems high to me? I do understand the need to balance between the very poor blood counts and the rising P.P.
The Doctor also mentioned Revlimid again and this would be their second choice of action. Both extremely harsh drugs that must be considered very carefully.

I am aware of the recent news reports in America about our National Health Service here in the UK. I would like to assure any of our American friends, that what is reported in your press and on television, is nothing like the care and attention we receive here. Our consultant and his team, are well read and very aware of all the innovative work that is being done at such places as Little Rock,Arkansas. They seem very well versed on all the latest medicines and nothing is being held back from Hamada due to cost. Hamada drug regime is approx forty maintenance drugs per day and one 60 micro gram injection of Aranspt Darbepoetin alta, per week. He has been spared nothing and for that, I am eternally grateful. I would welcome any comments on this, email or here, on the decision to wait until the 20 PP mark. Thank you good friends, who bother to leave comments here and for caring to following Hamada's Journey.

*Myeloma cells characteristically produce and release into either the blood or urine monoclonal proteins. Monoclonal proteins are referred to as either, M-protein, para protein or M spike. They are terms that mean the same thing.
The monoclonal protein is an immunoglobulin and in myeloma cells one or more mutations have occurred in the genes responsible for immunoglobulin production. Typically, the antibody function of the immunoglobulin is lost and since it is not performing it's antibody function normally, more and more are produced therefore causing an increase in protein levels.

What will today bring?

It's a "what will today bring" kind of day...Consultation for Hamada with haematologist at Lincoln today. We'll take ANY GOOD results! Results of Bence Jones as well...for those who understand.

This Time I Spent With You - by Susie Hemingway.

It seems to be like yesterday
this time I spent with you,
inscribed within my heart
rust gold and cobalt blues,
unfurled in beauty of this desert place
in infinite dunes that stretched for always
like endless domes diorama,
asking me to look forever not relinquish,
requesting me to see your life.

The warm winds of the Rub' Al Khali
blew gently with your love,
like a sacrament anointed
within the centre of my mind,
awash my heart no clemency
the secrets of your soul,
in whirlpools of the desert
that stole my heart as easily
as the lushness of sepia light.

We ran, and fell upon those sands
while 'drowning' in the heat,
It seems to be like yesterday
the sands beneath my feet,
it seems to be like always
in this bejewelled world of yours
it seems to be forever
the love from you that pours.

My heart stayed in the desert
and this time I spent with you,

this time I spent with you...


*Rub' al Khali Arabic الربع الخالي‎), which translates as Empty Quarter in English is one of the largest sand deserts in the world, encompassing most of the southern third of the Arabian Peninsula, including southern Saudi Arabia, areas of Oman and the United Arab Emirates. It can be cruel but it is breathtaking!

Copyright @ August 2009

"The Wedding Of Miriam And Hubert" by Susie Hemingway.

My very talented Sister Jane, restored the above Photo which is almost one hundred years old. She lovingly worked-on this picture from the past taking approximately twenty hours to bring it back from something that you could barely see, to this very interesting and wonderful keepsake for our grandchildren. She has been a great support and advocate to me during Hamada's illness and enjoys reading all my "Poems Of Love". So it was without hesitation that when asked, would I write a second poem for her upcoming journal about " days gone by - a family history" I very quickly agreed. It is still, after all, "a Poem Of Love!" So here we have:

"The Wedding Of Miriam And Hubert"

The faces staring out you see
a legacy from the past
linked by love it seems to me
a marriage that will last,
this primed, set and ordered way
made this for Miriam, a special day.

The Ladies all in hats so fine
brought in boxes and decked in time,
dripping with flowers, covered in lace
see how the little lads know their place!
Brush your hair, pomade at will,
shine your shoes, bring Grandpa's pills!

Sparkling jewels on collars and cuffs
has Aunt Maud brought her muff?
our handsome pair have walked the aisle
a special breakfast in a while,
but now we must all look our best
for Hubert's 'heaven' in nineteen eleven.

Don't forget your gloves or cane,
dear God, don't let there be more rain!
bring the chairs for we must pose,
young Jimmy please to wipe your nose.
Are we ready in our places?
A little stern, for happy faces!

'Poof and Bang' the camera goes
who'd have thought the world would know...



* Pomade: A Scented ointment for hair or skin of head.

:Thank you to Gerald Tucker for the Family
Photo.
:Photo Restored by Janey Johnson.
:All Rights Reserved

This Fight Without Choice.

It was never a choice was it?
it sneaked in and through
along and around,
this nasty wicked 'beast' that coursed
along the channels of our lives
it tangled and tried to spoil,
bent, broke, quietened and flawed
it tried to rob, steal if you may,
inflict, damage and take away,
it encumbered, hampered, distressed
and sapped,
this dark encroacher that went too far.
Still, it did not spoil or mar
love twixt us two
this fight...without choice.


All Rights Reserved @ July 2009
*This poem is dedicated to all Multiple Myeloma Sufferers and their Carers.

A Little Update.

We visited Hamada's very nice Renal Consultant Ms Little at Lincoln County Hospital today, to receive the good news that Hamada's Kidneys are still holding without the need for dialysis. We were a little apprehensive as Hamada's eyes have been somewhat swollen lately and I did have some concerns. We also delivered the 24hr Bence Jones marker test to Haematology once again. Although his cholesterol is very high at 9 and he will now require statins, his weight has improved and although blood remains very poor - Ms Little jokingly announced that he has only 2 white cells! - and the cancer is high, we are still very happy with any good news that can be found in this daily battle. At the weekend, Hamada managed to join the 'The Big Lunch'* in our village, which was a nation-wide event with many towns, villages and streets participating. I felt this would be good for him to see all our friends and as we had family visiting for the weekend and the event was held outside, quite a safe event for him to attend. A thoroughly nice afternoon unfolded, the picture above was taken at this occasion.
*The Big Lunch = everyone brings a dish or two to make a wonderful feast and we all share and eat together.

"The Waiting Game" by Susie Hemingway

Nothing now for you they say
they will not offer yet, no way
no action or depart from same,
it is to be a waiting game...
and so the dictionary spills to me,
tarry, await, bide but see,
expect and watch, kick in one's heels
but do not depart from daily pills.

Continue strong with courage they say
but 'they' don't live from day to day!
stand firm, remain, counter or sustain
is there justice to obtain?
grasp this power of resistance
strong to overcome, do not waver
build your fortress, this war for us
which will be done.

Dig in and fight to stop invade,
your courage will make another day...

"Calm Are These Days"

Soft jade green and mellow amber
are the colours of these days,
soft green like finest cashmere
I'd wish to wear in special ways,
liquid amber of runny butterscotch
poured gently smooth on silky creams
calm like soothing sax at midnight
seems to be the current scene,
days unfold like gentle ripples, lapping
clear against the shore and you
as peaceful as the morning vista
that glistens across land we adore.

Calm and peaceful for a while
like soft vowels in lovers breath,
warm and sweet like feather touch
a pause infinite and needed
Oh! so very much...
Then days that came like brightly coloured
Peacock that arrived in view,
we sat together admiring beauty
no 'grey life' was meant for you!
Colours shimmering a Midas touch,
treasures of the purest nature
"thank you Lord" this means so much.

Soft jade green and mellow amber
are the colours of these days,
then turquoise blues of dazzling splendour
arrived for us along the way
like prismatic rainbow over Maui
or amber sunsets falling West
just as clear as morning dew
with glistening eyes - I drink this view.


All Rights Reserved @ June 2009.
Photo taken by Susie Hemingway
( The Peacock visted for three days )

Continuing - Update

Hamada's consultation this week with his 'Dr Angel' at Lincoln County was thorough and certainly without time limits. Dr Angel went slowly through all the stats and very little has changed. Haemoglobin up a notch at a lowly 10.3, White Cells up a little at 1.9, Neutrophils up at 0.72 Platelets down again to 42 Everything else is about the same, but as we anticipated Para-protein is up again from 8.4 to 8.8 Bence Jones reading is now at 0.04.
The outcome is the same, we must wait and monitor. Just maintenance drugs daily but not including any Chemotherapy. Again the Consultant discussed Velcade and the newer Revlimid both of which Hamada has not tried, but still the consultant's considered opinion is not yet. Hamada remains very weak, sleeping more than 16 hours per day! but has in recent weeks made two celebration evening dinners out, so is feeling very pleased with himself. We are grateful for these peaceful calm days without the trauma of harsh Chemotherapy.

The Eyes Of Pride - by Susie Hemingway

Brown they are you know,
big and shiny like Autumn conkers
fringed and dark charcoal smudges
emitting beams like fireflies,
seeing all but telling no one,
meditative powerful authority
once of lushness,
the eyes that could bewitch a maiden
now a little faded perhaps rheumy
one might say, yet could in a blink
seduce and tempt to lead astray...
the eyes that tell the story
the eyes that show their pride,
watchful ebony pigments that
twinkle indiscreetly like
magnificent coal diamonds,
templates of sadness
still, such infinite eyes of pride.

Hamada Makes It! - As Sure As....

As readers to this blog already know I chronicle here, a continuous register of updates and poems telling of Hamada's journey with the difficult disease of Multiple Myeloma. A most complex illness to treat and stage, with at the moment, no known cure. Still for many people it can be managed well if diagnosed early. Hamada was diagnosed when the Myeloma had attacked his kidneys and was in eighty percent of his blood-steam. So you will understand his courageous battle with this disease.
Hamada was very keen that I record his progress or lack of, during this journey to perhaps help others. So you will appreciate that my poems must be and are, from my true feelings and watchfulness as the days go by. Hamada is currently out of remission but is not undergoing any Chemotherapy treatment at the moment,with only maintenance drugs prescribed, in the hope that he will become a little stronger to try again any remaining chemotherapy drugs. that he has not tried before.

So it was with great delight this weekend that although very weak and sleeping for best part of everyday, he managed to courageously find enough energy to join in Son Matt's 40th birthday evening celebration, at a very nice local Inn for a splendid family meal together. He had so desired to be there, was determined beyond all measure to make it... so 'As Sure As' with a little help from family members, Hamada made it to the Blue Bell Inn. He enjoyed so much this very important celebration although not moving much at all the following day and resting continuously since. Well done Hamada, I know what it took to manage this and I am so very proud of you Habibi.

As Sure As - A Lament by Susie Hemingway.

As sure as the sun rises
in the East everyday
as sure as your smile
lights-up the room where you lay
as sure as this calamity
life robs in this way,
as sure as my anger
snags through this pain,
as sure as the worried looks,
painted on the faces of friends
I see, there will be no gain.

As sure as the rippling tide
ebbs again to flow,
as perpetual stride comes
in the darkness I know,
as soft light fading
to soothe for a while,
how pointless this shattered glass
I hold in my hand...
for as sure as faded petals fall
from the 'roses' on your face,
as sure as your dark eyes
keep looking for me,
I'll breathe and breathe again
so you will never see...

As sure as the gibberish words that I write
as sure as day, comes after night
as sure as this ache that grips at my heart.

As sure as....


All Rights Reserved @ June 2009

Photo: Courtesy of Matt Rutherford.

Finding Something That Chills!

Hamada continues much the same, sleeping his way through most days, bless him. He is trying to conserve/find some energy for a forthcoming special event. Son Matt's
40TH Birthday, when the whole family will be here for a long weekend. We hope to make this a very special occasion and so we need Hamada, if he can of course, to be able to join us - at a very special place, for the evening celebrations. So fingers crossed for that.

I have recently been playing the new CD of Melody Gardot, this music of the 'sleepy Jazz type' that Hamada and I love, it seems to have such a relaxing effect on us both, we imagine dancing together as we did just a few years ago - see my poem "We Dance Again" below.

If you would like something to take your mind of 'horrid things' and I know many readers here do. Try the lovely sound of Melody Gardot and her new CD "My One And Only Thrill" Listen to the enchanting "Our Love Is Easy" and the sensual track of the named album, "My One and Only Thrill" and the very delicious "Deep Within The Corners of My Mind" - I so wished I had written that! The wonderful orchestral backing which is quite perfect runs through these tracks, so if you are stressed and worried, this is indeed, very 'good medicine' as it takes you easily on a much needed journey...

Susie's BBC Radio Interview with Judy Theobald

You can hear Susie reading on the third anniversary of Hamada's Diagnosis with Multiple Myeloma "I Write for You" and also the full BBC radio interview on the Judy Turnbald Morning Show on, http://www.susiehemingway.com
Under the Categorie - Site News

~ My wonderful congratulation flowers shown above ~

Life Is Fragile..Love Is Not - by Susie Hemingway

So spins our lives in turning chasms of change,
blurred and slippery as water
cascading over slimy rocks,
my wordless gesture in trouble times
invades your worried mind,
fiercely as the brushing hand to restless horse,
my smile confirms, to reassure your fretful gaze.
As hell as life sometimes appears,
in daily disclosing of newer pain,
my heart swoops and suffers,
my misty eyes my soul knows
life is fragile but love is not.

As birds black and shiny soar
to 'crow' in noisy rattle begin,
another nasty turn like sin,
to stab in pain, to etch within,
to reproduce in making bold this latest evidence,
dismissing in magicians wand, I wave again
I wave again...
To struggle and plunge I flounder there
impeach myself but always care,
frightened damp and cold
my misty eyes, my soul knows,
life is fragile, but love is not
love is not...

All Rights Reserved @ May 2009


Excerpt from United Press:

Your poem " Life Is Fragile - Love Is Not" has been recognized as one of the best poems this year and to mark this fact we wish to publish it to a new book called Whispers On A Breeze a showcase of the best work of a group of Poets. This book will be ready for publishing soon can be ordered at all good bookshops.

Up-Date

Hamada continues comfortably, still sleeping for about sixteen hours per day. He enjoys all his meals and eats remarkably well. For some time I have been looking at the benefits of 'Curcumin' and the very encouraging documentation regarding this supplement for sufferers of many ailments, in particular Multiple Myeloma. Of course it is always a difficult choice to make when deciding to try any addition to the already large amount of maintenance drugs taken daily and the advise of consultant must always be taken into consideration. For many, these extra supplements do seem to help and we were very thoughtful and a little excited about something that could potentially help Hamada. The biggest concern was of course his ailing Kidneys, although much better than at diagnosis, are still a cause for concern. Also the greatest factor, his extremely low Platelet counts (44).
So today when receiving information from the Scientific Panel of a leading distributor of Curcumin here in the UK, confirming that this supplement does indeed have an anti platelet effect and the potential for exacerbation of low platelets,we have decided not to pursue Curcumin further.

Breath Of Life - My Partner - by Susie Hemingway

Fresh blood falls upon our streets
like dark red satin, smooth upon a bed
wild trees blow and hang their limbs
as pain strews all living things,
still within, as snug as partners curl
upon a furry rug in fire glow,
my mind tells me you're safe
my heart knows you are there
you are the sunlight in my arms...

My heart impaled transfixed in fear
when world rocks life so bitter and cruel
this struggle for peace so gently brave,
in quiet times as I survey the scene
and in frightening moments of terror
come fragrant as a summer rose
thoughts of you, to clear my mind,
you are the sunlight in my arms
you are my breath of life...

"How harsh, how tough, these long days
how precious your honourable soul,
how undemanding how much you care,
this ready smile of a brave man
and as you fight for strength, this daily task
your right of sovereignty is quietly protected,
this stillness comes, our land is covered,
lives are changed."

But, you are the sunlight in my arms
Still you are my partner,
Still my breath of life...


This poem is dedicated to the Men and Woman of EMS/ Fire Services, Providence, Rhode Island. USA. and to all Medical Personnel, Fire Fighters and Police Forces World-wide, who have partners and loved ones waiting for them at home.
See: http://rescuing-providence.blogspot.com/2009/03/poetic.html

3rd June 2009. Have heard from Paul Embery, Regional Offical,London Region FBU, that this poem has now been circulated to all members of the London Fire Brigade.

All Rights Reserved @ April 2009

Hamada Update - 24 April 2009

Some awaited tests came back yesterday for those who understand and like to follow Hamada's journey.
The Skeletal Scan clearly shows the L1, L2 and T8 collapse and now there is a small area showing in the pelvic area,which is to be expected but of course still very worrying.
The Bence Jones is holding at 0.03 but the Para Protein (M-Spike ) is up again, now at 8.4 but not at the speed of the past 3 Months.

The Bone Marrow returned at 5%. better than we had hoped for - was 80% at diagnosis in May 2006 - Stem Cell Transplant achieved to good partial remission in October 2007.
Still, there is to be no further treatment at the moment apart from the massive amounts of maintenance drugs daily, even though the M-Spike is rising...the consultants view is to watch and wait.
I would welcome any comments on these readings from those who understand. Thank you.

Our very best and heartfelt thoughts to all our friends and carers who read this blog, and are making with courage, the same journey as Hamada.

Through My Eyes - by Susie Hemingway

The music, distant, dusty but ours from years ago...

fills my mind and soul

my toes in shiny heels do tap,
my face in smiles my hands do clap,

and through my eyes, absorbed and clear

such beautiful faces, sitting here,

these sparkling eyes, this crowded room,

so young, peaceful, handsome, so alive...

just enjoying each other, just being together.

I hear their laughter I place my hand on his,

through my eyes I see them here

through my eyes I see it all...

All rights reserved @ 2009. - Written about the evening of the 18 April 2009

Indeed A Wonderful Weekend !

Hamada and I spent such a wonderful four days with younger son Jo in the beautiful Chilterns, Bucks. Jo and his beautiful Laura, entertained and looked after us so very well. It was such a delight to do nothing for the long weekend and so many thanks to Jenny and Ian who helped Hamada to make this journey with help travelling, and all the necessary carrying of extra 'bits and bobs' to make Hamada as comfy as could be. Hamada managed so well, but still having to sleep once again after breakfast, enabling him to join the fun in the evening. It was a super time, some good shopping and lots of laughter for me with the girls and wonderful party times in the evenings with superb dinners - Jo being a consummate chef - and not having to cook a single thing the whole weekend, thanks Laura, was an extra treat. It was really special to catch up with family and friends, to see Rich and James once again, they had grown up with Jo and had frequented our family home in earlier years and are now young men. Thank you Jo and Laura, I am sure you noticed the extra sparkle in Hamada's eyes X

Hamada Continues Well At Easter-Time

Photo: Easter Sunday Last Year ! - 2008.

Hamada is continuing well, and we plan to have a small Easter-time celebration at 'Orchard End' with a good Roast Dinner and some Chocolate Treats. Hamada is not well enough to join the wonderful Easter Breakfast which after watching the Sunrise at a local beauty spot, is celebrated together with friends at the Village Hall. Always a lovely occasion, especially last year with the sudden onset of snow!

This week we had a very comprehensive consultation at Nephrology at Lincoln, going over carefully all the drugs Hamada takes. Then a good discussion with the specialist Ms Little, her very considered view being, that Hamada's kidneys are just functioning enough without the need for Dialysis. Dialysis may just give him a little more energy but not enough for the dramatic change to Hamada's quality of life that would ensue, with this irreparable (for Hamada)procedure, the need also - if not done at home- for the four days per week, journey to Lincoln. This with all the other clinic visits, would be far too much for him to endure. So we are thankful that his kidneys are holding on. We believe this has been achieved with the very good amounts of water taken daily to flush through the proteins that prevent the kidneys from filtering waste products from the blood. When Hamada was diagnosed almost three years ago he had only 8% kidney function he now has 15%. We still await the results of the latest Bence Jones 24hr test, also the Bone Marrow Biopsy and the Skeletal Scan.

We wish our very good family, friends, at this special 'Spring Time' who with watchful eyes, continue to support us -how lucky we are to have you - and to all fellow Multiple Myeloma sufferers, a very "Happy Easter" or "Happy Spring Feast"

I Watch - by Susie Hemingway

In watchful reverence as slumber creeps
Comes the silver rays that cast shadows on my walls
My pen doth scratch the paper,
In breaking silence comes my poetry by moonlight,
Rest quietly beloved, with your rendezvous in dreams
This daily plunder systematically steals your frame
But nought can rob your soul.
This modicum of peace, this repose in sleep.
I proffer my heart as my hand trembles in writing,
Just your breath faint and steady, holds my heart.
And as the clouds cross the quivering rays
Leaving my heart in darkness,
In breaking silence, comes my poetry by moonlight...


All Rights Reserved :@ 2009
"I Watch" has been selected to be published in a forthcoming book by United Press called 'Poetry By Moonlight'

A Second Opinion

It was such an important Consultation for Hamada yesterday - as Para Protein/M Spike is now at an alarming 8.1 - we gained a much desired second opinion.
Armed with all our questions and with no time limits, we discussed once again, any treatments now open to Hamada.. Our Doctor Angel who had been studying Hamada's blood chemistry and massive amount of medical notes also agreed, that to try with Velcade at the present time is not an option. He also suggested that another drug combination, one that has not been tried before, maybe sought further on. Hamada's blood CBC is very poor and damage from any of these strong 'chemo' drugs, may do more harm than good, spoiling what quality of life he enjoys now. The consultant has requested another Skeletal Screening and a further Bone Marrow Biopsy. These will take place this coming Monday. So it is final that at the moment it is a wait and observe approach. The Doctor answered every question frankly and clearly which is how we like it. It was a good consultation and I feel that all is being done for dear Hamada.

" I Write For You" - by Susie Hemingway

As sun doth melt the silver days
and fresh green buds do chase away
the remnants of these chilly days,
I write for you...
you sleep and sleep my only love
you miss spring birds and clouds above,
in dreaming slumber, days do pass, and
even though against the breeze
the fragile words do come to me,
still sleep stays on those lovely eyes,
for days are shorter dear for you
the circle smaller, in violet blue,
again the sun will find it's rays
to warm your heart and fill your days
and I will spend my time with you
in quiet gentle solitude,
till this day, my only love,
I write for you...
soon once again, dear God for me
you'll sit on swing, beneath the trees,
to listen to the buzzing bees
the rustle of the summer leaves,
then you will snuggle close to me,
when smudges of my tears
do fall, to stain the ink,
and you will sleep,
and I will write
my words for thee...

This Poem read by Susie on BBC Radio on 20 May 2009 during Poetry Week, can be heard, on: http://www.susiehemingway.com ( just scroll down, past the poem "Love Smiles" )

Copyright @ 2009

My Heart Goes Out

My heart goes out to Teresa (TK) my friend on here, and on 'Face book' . Her dear Husband Richard, lost his fight against Mutiple Myeloma yesterday. Teresa has always been so supportive and so very knowledgeable, helping to guide many, on medical issues through her informative blog. Richard was a brave and courageous man who will be missed very much.

My prayers and thoughts are with you Teresa

Update.

Hamada has continued quite well since the last consultation at Lincoln. He sleeps a lot, managing to get up for lunch, with a little siesta in the afternoon. He then enjoys to read or watch some television in the afternoon and evenings. He loves looking across the meadow from our windows, now the snow has gone and Spring very slowly comes once again to the Village. We have managed with some great help from our dear Brother-In-Law to visit "Orchard End" for lovely meals or teatime treats, cooked so beautifully by my sister Jenny, how lucky we are to have them here. I have been looking and reading about other treatments for Hamada and will ask for a second opinion at our next clinic visit. Thank you, for the many mails of alternative ideas for further treatment. I will ask about all of these and perhaps the right time to implement them, should the consultants think they would be suitable for him. I must ensure there is nothing more that can be done for Hamada. He is very content with his 'quiet life' is in no pain when sitting still or lying - his medicament's cover that - which is a blessing, but he does struggle with pain on moving. It is very difficult now to get him in and out of the car and then so much of his precious energy is used up. We now look forward to the next visit in early March from our children - they do lift our spirits so.

Life is fragile but love is not....

A Disappointing Consultation.

It was not a good consultation for Hamada this Monday at Lincoln. A very disappointing CBC again, alongside the news that the Doctor does not feel Velcade is in Hamada's best interest. We were so hoping for the benefits of this drug. The Doctor is of the opinion, that Velcade is way too powerful for Hamada's already weaken state, believing it will do more harm than good? I will of course, see what a second opinion thinks, but at this time the doctor feels it is not an option. There is thought that Thalidomide may be used once again, to try to reduced the very high, now at 6.3 para protein (M spike) or as a 'last ditch attempt'! It seems he would prefer to 'manage' the Myeloma in an effort not to do further damage with even more strong chemotherapy. Hamada has accepted this, but it does not 'sit well' with me at all. Although I clearly understand what the Doctor is trying to say - and knowing this time would surely come along - I am by nature, a 'fighter' and find this the most difficult time of all. It is written across Hamada's notes that this terrible disease is now too hard to treat!
It has not been easy to write this post, as I am sure you are all well aware.

For those who understand these readings: PLT.now at 39(normal 143-332) HGB10.7 WBC1.05 NEU 0.58 and Paraprotein 6.3

So my friends "make everyday a masterpiece"...

All comments welcomed.

Deal On Myeloma Drug !

Great news yesterday as we heard that the drug advisers have changed guidance on Lenalidomide, also known as Revlimid. Revised draft guidance has agreed access to the treatment for myeloma sufferers, under a cost -sharing deal where the drug company will pick up the cost after two years. This is the first guidance from NICE to be revised after the new rules, designed to be more flexible in judging treatments, offering survival benefits in terminal conditions. This latest recommendation is out for consultation until the 20th February.

You can read the more on http://news.bbc.co.uk/1/hi/health/7859053.stm and also more from the wonderful http://www.myeloma.co.uk/ who have fought so hard for this to come about.
It is indeed the most wonderful news.

In Quiet Days - by Susie Hemingway

In quiet days as fearsome news
imparted so gently, comes to view,
your face so stoic hardly moves
my accepting warrior, my hero true.

The look that really says it all,
and although you can't, your standing tall,
as beautiful hand is placed on mine,
I bite my lip, as the clock chimes.

Say nothing yet, let's think it through
for actions now will be askew,
decisions made in quiet ways, will pave
for you another day.

The reality that stings my eyes
the sadness as results arrive,
in watchful bide my thoughts of you,
your boldness gallant fighter true.

In quiet days of misty cold
our world is smaller, but not letting go,
this 'beast' that creeps within our realm,
will, with courage, be crushed down.

My accepting warrior, my hero true...

Not So Good Readings For Hamada !

Just before Christmas we received the latest very disappointing blood results for Hamada. I felt it was not the right time to post them but here they are now. I would welcome please, any comments or emails from the very knowledgeable Myeloma Folk who are following Hamada's Journey.
HGB -11
WBC- 1.2
PLT - 40
NEU -0.72
and worst of all - Para protein (M-Spike) 5.3 - ( Last reading 1.9 )
More tests to be done in the coming weeks and then the decision will be made as and when to use Velcade. ( Hamada has no more stored stem-cells )

lgG Kappa

Greetings

Hamada and I would like to wish everyone who reads -A Power Within, a very Happy Holiday, and a peaceful and rewarding 2009. Many special wishes go to all those suffering with Multiple Myeloma.

In Christmas Lights by Susie Hemingway

Sharp and crisp as snowy nights
crystal clear in prism lights,
gentle orbs that sparkle bright
shining are your eyes tonight.
Reflected jewels of liquid amber
like dripping rich fondant creams,
chocolate in the deepest hue,
I bow my head to look at you.


Eyes that hold this strangeness well
in candlelight they watch and drink
forgotten words, much time to think.
A bitter pill that's hard for you,
as fairy lights come into view,
white and golds, red and greens,
you simply watch in reverent scene,
reflections in those honest eyes
of baubles and of Christmas time.


In Christmas lights my poems for you
expressed in love, a poignant view...



All Rights Reserved: 2008

On Reflection.

About this time last year I wrote the poem " Then And Now" Hamada had not long received a Stem Cell Transplant and was weak beyond belief. The poem tells of my feelings and hope at seeing another Spring together. Reading once again this poem, my feelings are still much the same but thanks to the wonderful medical knowledge that enabled this procedure, at a point when Hamada was so very ill, it has given him another wonderful year with us all. We have managed a small holiday and Hamada has spent lots of wonderful weekends with our dear family on their regular visits North. We even managed a trip South to see extended family, with such determination shown. He looks really well again, although extremely weak, sleeping for a great part of the day, he cannot walk any distance but I know this year has been so special for him. He is now in what the Consultant calls " a good partial remission" I have re-read my poem and although we have not made 'many walks together' during this year, we have sat by the 'sparkling sea' and most of all had another Spring together. The courage everyday, shown by this brave man, is amazing. Long may this remission last, may he get stronger and enjoy another Christmas and maybe yes, many Springs beyond..

"Then And Now" - by Susie Hemingway - December 2007
All Rights Reserved.

And The Heavens Smiled - A Prayer -by Susie Hemingway

Through my fears, the heavens smiled
shafts of sunlight fell my way
great big rays of golden glory
came to me that bluest day,
from somewhere amid the heavens
upon a gentle breeze,
issued forth that tranquil feeling,
bringing salvation straight to me.

A calm and needed preservation,
radiant in beam of light
to not forsake, although forlorn
and hopeless, seeing all within my sight,
I lift my face to narrow beam
it's pouring warmth to cover me,
and stubborn as this heart allows,
I stand in watchful patience now.

Come shine for me, your rays of gold
come gentle breeze, to bathe my cold,
Oh! glowing energy in crimson light,
impervious to change so bright,
enlighten with your power,
the vigour of my soul,
in dreams of costly structure
this folly, that is bold.

Who sent this cheering influence
in heart where sadness dwells,
what spark, what fiery brilliance,
provoked this staunchness now,
still, the heavens smiled, and shafts
of sunlight fell my way,
great big rays of golden glory
came to me that bluest day...

@ Copyright October 2008

"Sunset at Kanyemba" Courtesy of Ellie Robson.

"Sunrise at Hemingby" Courtesy of Janey Johnson.

: Extract read at the Epiphany Service In Village Church Jan 4 2009

All Rights Reserved @ 2008

You Are - by Susie Hemingway

You are the sun when shades are pulled

You are the sparkling water that rushes

over shiny rocks in torrent stream,

You are the smoky moonlit shadows on quiet walls

You are the sweet smelling cotton of summer days,

Yours is the smile, adorned in radiant highlights

on a tired face,

Yours are the dark 'bitter chocolate' eyes

that twinkle indiscreetly !

Yours is the contented sigh that embellishes my room,

You are the blackberries that hang in myriad burgundy

array against my garden wall,

You are the saxophone in bluesy midnight tones

that stirs my heart,

You are the will and courage of every day

and I am the heart that never ceases to worry...

All Rights Reserved 2008

"You Are" - Now Selected For Publication in A New Poetry Book - The Gift Of Love

365 Days Post Transplant !

"Congratulations Habibi" It is now 365 days post transplant for Hamada. We once again thank Professor N Russell and his team at The Centre for Clinical Heamatology at Nottingham City Hospital.

A Partners Guilt

So many Carers of people with Multiple Myeloma are either wives, husbands or partners. caring for their love ones. A tough job to undertake, often immediate and always completely life changing. It is not only for the sufferer of this destructive condition whose life undergoes such a dramatic change but also for the Carer, whose life suddenly goes spiraling in a different direction to the one he or she imagined. Myeloma by and large but not always, seems to present itself in later years, very often about the time of approaching retirement. A time when you perhaps imagined doing things together, or for some of the time separately, that you dreamed of throughout your working life. Husbands who looked forward to many days spent on the golf course for example, who now spend their days in hospital waiting rooms or tending their love ones. Woman who had imagined easing up on the daily rush of fitting work around home care and had hoped to spend their days, for perhaps the first time in their lives after caring for their families, doing the things they had long to do. All these things are true for me and my love one, a life changing course of direction for us both. It is not easy missing the things I loved the most, dancing together and the passion of our type of relationship, walking together, exploring new places, help with entertaining - nothing quite so nice as the man pouring the drinks - and now often seeming to have a child again, instead of the powerful man I knew so well. So for me, I am often filled with guilt at missing those things. So I pull myself back, when thinking of all the things that Hamada loved the most too, and now must miss so badly. How frustrating it must be, not to be able to play any boisterous games with his beloved Grandson when he visits. How sad it must be to rely heavily on us all for simple things, like getting to his feet from his chair. Not being able to walk freely or for any distance, knowing he will never run again. For someone who was once so fit, it must be purgatory. So how dare I even think about things I miss, or dreamt of in my retirement. It is true to say that many younger people are now being diagnosed with Multiple Myeloma, so it is not entirely a disease of the elderly, how much worse it must be for those who still have young families to support and care for. I cannot imagine and in that respect I am so lucky, but I still feel guilt for wishing that things were not this way.



Now to the second guilty part, and I wonder how many partners feel the same as I do. Could I have picked up that he was so unwell sooner. Hamada had achieved over the years the highest qualifications in education and had become a very successful business man. He travelled to many places but mostly to the the Middle East where his superb knowledge of English and native Arabic helped with the education of others and he was indeed very successful throughout his career. During his early fifties I had noticed a slowing down, he was not nearly as dynamic as in early years, certainly not so driven - the same can be said for most of us as we get older, I suppose - but for someone like Hamada whose very core of being was his career and work ethic, it was quite a dramatic change. So here comes my guilt, could I have missed signals that he may have had MGUS or in fact 'Smoldering Myeloma' working away in his blood for a number of years before the full blown Multiple Myeloma was diagnosed. Could I have picked- up on the fact that something serious was 'going on'. Something that had we caught it earlier could have saved his kidneys from such profound damage. Hamada always had regular blood tests over the years and many medicals for insurance for work contracts , but never of course the type of blood or urine tests that would have alerted us to this disease. He never had bone pain or kidney symptoms and never were any unusual blood problems detected. Yet, as the closest person to him, could I have picked-up, that this dear man was changing, or suffering in some way. That the slowing down career wise, the poor decisions regarding his businesses, the financial errors of judgement made, were in fact because he was very ill. Perhaps indeed already harbouring the growing Myeloma of abnormal plasma cells and that by the time of diagnoses were in 80% of his blood stream! Could I have noticed something? anything? that would have alerted me to get specialist help sooner. Tell me, do all Carers feel this way? I know the outcome of this particular disease cannot be changed but would Hamada have stood a better chance and gained more years, had it been diagnosed earlier. Yes for sure, this Carer feels some guilt, do others feel the same I wonder.

Extract from "Seasons Pass" - by Susie Hemingway

As pears that do not ripen

affirmation takes it's place,

when Autumn leaves turn to gold

my mind trenchant and keen;

I conquer many fearsome things

subdue and overcome, and as the mists

arrive, how precious days become...

Written in January and shown below.

All Rights Reserved @ 2008

Photo: Susie Hemingway@Flickr

Hamada's lastest CBC

Hamada's latest CBC on 18.09.08. shows a slight improvement. Not much more advice from the Haematology department this week, just to keep thinking about the dangers of infections re: trying to be watchful and remembering to keep Hamada out of crowded places and away from little ones with colds etc also a few more things regarding diet, which we do follow carefully. It is almost a year now since Hamada's Stem Cell Transplant and the Consultant is calling it "A Good Partial Remission" but reiterates just how vulnerable he is still. Hamada also did another 24 hr Bence Jones Test on Monday and we will receive these results in the coming weeks.

The Renal consultant yesterday, also picked up on the very low 1.3 white cell count, calling them "rubbish" and also the platelets which are at a very poor 41 reading. Hamada even bruises very badly from his injections now. We have read that the vegetable Kale could help with the platelets but then in turn that could affect our attempts to preserve the remaining kidneys? Finding that middle road is often tricky, and not easy as what is helpful to Myeloma is not very often helpful for failing kidneys. Any suggestion from those who know?

btw: http://www.whatnow.org.uk/ this is a really good social network for people affected by cancer.

On The Edge Of A Cliff - A Carers Perspective

Rather a lot of people have asked me " how do you keep cheerful " and " what keeps you strong when faced with such a change to your life"
So what is it that gives some the strength to keep fighting and staying strong in the face of adversity? What enables some Carers to give their best and their continuous support day after day, when for most of us, burying our head in the sand or turning to run would feel so much better. Well yes, difficult questions to answer I think. I know how different it is for all Carers, and of the problems that affect us all and no two people are the same or will have the same approach when confronted with devastating changes, not only to their love one but very often to their own lives. For me after the initial shock and my goodness what a dreadful shock it was, I spent many nights thinking of how I would find the strength to deal and do my best with, the awful changes that would befall us. Having only just retired and with both of us looking forward to a more relaxing time, I had hoped for some new adventures, lots of dancing perhaps and certainly a lot more travelling. Time for swimming, time for walking together.

When Hamada in May 2006 was rushed to Lincoln Hospital and then on to Leicester Hospital with sudden onset kidney failure, found after a routine blood test, I was in severe shock as anyone might be. After his first night in Leicester I returned home alone and immediately went to my PC to look for the causes of sudden kidney failure. I remember writing on a scrap of paper the three things that matched closely Hamada's condition, the second on my list being Multiple Myeloma. It was something at the time I knew very little about, I did know, it was not as yet a curable cancer. So when the next day, the Doctor with a rather grim face, came to tell us the results of the barrage of tests taken and the devastating news, I passed to him the small list that had been tucked in the palm of my hand asking " is it one of these " and in my mind thinking, don't let it be the second one, but it was! I think from that very moment on I decided that for me, the only way to confront this crisis was face on, asking and learning as much as I could every step of the way, I was standing on the edge of a cliff with a strong wind blowing. I could dive and swim away, shut my mind or bury my head. I did not want this thing to be happening to us but it was. So I decided to turn to face that strong wind with as much force and as much knowledge about this illness, that I could manged to glean and from every source I could possibly find. Knowledge will give me power, if I could understand as much about this disease, as my small brain will allow, it would enable us to discuss and make good choices each time we needed to fight. Is it the right time for chemotherapy? should a stem cell transplant be an option? All these questions are asked daily by people with this very serious illness. I wondered, are these drugs the safest Hamada can receive? will they obtain the results required? I needed to learn fast, I needed to learn about the drugs that would damage further or take away the last remaining percentage of kidneys working. Oh yes! it happened, the young Doctor who prescribed by mistake, drugs for Hamada, that would have wiped out any remaining kidney function, had he taken them. After all the months of chemotherapy, all the money that had been spent getting him to and through a Stem Cell Transplant, had I not read, had I not intervened! With my newly learnt knowledge I was able to check what had been prescribed, query and shout loudly before any damage was done. For me gaining as much knowledge as I can, seems the only way to protect someone who is unwell and cannot do it for themselves. Many I know will think too much knowledge is a dangerous thing when dealing with medical matters, perhaps some are saying I bet she interferes too much. I do not believe this to be true and I really don't care, for without this knowledge how can we make good judgements when given the very serious choices we are expected to make.

I keep cheerful because I am very lucky to have an amazing family and good friends who support me in so many different ways. Our children who bring light and joy every time they visit and the fun we all have together and their constant support in cheering Hamada on. My dear friends who never fail to phone, often picking just the time when I need cheering up a bit, when the day has been tough or I am tired because I have spent too long in Hospital waiting rooms, dreaming of all the other places I long to be. My dear Internet friends with their great messages and the American Cancer Network ACOR, a myeloma list-serve whose knowledge is just incredible and so often points sufferers of myeloma in the right direction.

How my heart goes out to those who struggle alone or may have families who do not understand, or, even worse do not care about the strains of day to day living or caring for those with Multiple Myeloma. How badly it affects me when I see elderly folk appearing both to be unwell, struggling to manage their hospital appointments and to understand their 'chemo' regimes or their routine medications, they need our help. Then again I know quite clearly that I need to find strength when waiting on 'the edge of my cliff ' knowing my love one is in partial remission and wondering how long it will last this time, perhaps looking for changes and signs that might mean this precious time is over. Hoping that I will once again find ' the power within ' to go forward with knowledge gained, to continue to confront and fight, to obtain the best possible care for my love one, for as long as I too, remain well.

So to all of you that have asked these questions, I choose to turn always from the edge of the cliff and walk into the wind, I will put a smile on my face daily, with the knowledge I continue to learn, I will stand close to Hamada and help him to make good choices and I will face this 'beast' straight on.

"How Still - Remission" by Susie Hemingway

How still this life of ours becomes
this joyous quiet silent scene
this plateau held in time
this tableau captured in a dream,

rest here on this your island
marooned with only me
for peace is all that's needed
to complete this tranquil dream;

my pilgrim, breath this air
your days are restful now
nothing to weigh more heavy
than my hand upon your brow;

as your friend I stand protective
wishing to clasp this pause,
as your lover I fight your corner
always asking for much more!

suspend this moment fast in time
and navigate all hurt away
this dreamlike state, this voyage this journey,
how still this perfect scene...

All Rights Reserved August 2008

Neutropenia - an explanation

I have been asked to explain what Neutropenia is.

Neutropenia is an abnormally low number of neutrophils in the blood.
Neutrophils serve as the major defense of the body against acute bacterial and certain fungal infections. Neutrophils usually constitute about 45% to 79% of all white blood cells in the bloodstream. When the neutrophil count falls below 1,000 cells per microliter of blood the risk of infection increases somewhat, when it falls below 500 cells per microliter, the risk of infection increases greatly. Without the key defense provided by neutrophils, a person has problems controlling infections and is then at great risk. The cause of Neutropenia developing happens when neutrophils are used up or destroyed in the bloodstream faster than the bone marrow can make new ones, for example in the case of certain cancers and the use of the very strong drugs, such as those used in chemotherapy. Still there are other reasons why the bone marrow shuts down - Aplastic Anemia is one. So to sum up, people who have severe neutropenia can rapidly succumb to infections because their bodies lack the means to fight invading organisms.

I am sure I will be corrected by the very many knowledgeable readers if this is wrong in some way, but this is my understanding of Neutropenia and I hope it helps in some way.

Hamada Up-Date

Latest trip to see Hamada's Doctor at Lincoln County Hospital shows that the Bence Jones results show a very small increase @ 0.05 which is still such a tiny reading, this is such a relief really, after the 'scare'. The Doctor was also pleased with Hamada's blood results all except the Absolute neutrophil count, which is still very low. So we must continue to be watchful and cautious about infections and move really fast if he succumbs to the slightest thing or even small temperature change. He is relaxed and contented after our lovely holiday. Best wishes to you all.

A Helping Hand

Hamada had a wonderful time and yes he managed to dip his toes in the Med once more. Many thanks go to Ian who helped Hamada every step of the way. Could not have made this journey without him and Jenny, bless you both xx Many thanks also to the wonderful support received from the services at both Doncaster/Sheffield and Mahon Airports who sped us though baggage and passport controls and who treated Hamada gently and with the utmost care. It just shows you minor miracles do happen. Best wishes to you all.

See further post "So Miracles Can Happen" on http://www.susiehemingway.com/

:Poem Sea Dreams shown below.

Sea Dreams - by Susie Hemingway

Sea Dreams.

In dreams that free the tangled man
you walk on beach of fine white sand,
it's in your soul to yearn this so,
a struggle yes! but we shall go

I know you dream to smell the sea
to fill those lungs with ozone free
to feel warm breezes brush your skin
taking pain from deep within

the sea a vivid colbert blue
on crest of waves a dream or two,
your slim brown feet will curl and flex
as salty ripples flow and ebb

dream dear man for it will be,
to walk the sands again with me,
to feel the sun on tortured skin
to ease all damage held within

for if I have to carry thee,
among the palms your limbs will free,
your eyes will see, your heart will soar,
the pain no longer at your door.

"Sea Dreams" that deep become,
a wish for thee, that will be done...


All Rights Reserved July 2008

Is There Ever A Right Time ?

Is there ever a right time when you are severely ill to take a holiday? Some would say that's a risk too far! Maybe because we have been so shocked at the invasion into our lives of this 'Myeloma beast' and also Hamada had so many serious complications during the past two and half years, that we have never felt it possible that he should leave his home, even for a short time. Still after consultation with Hamada's doctor and obtaining the consultants letter to aid the travel insurance, we have decided the time is right, to take a Mediterranean trip. Hamada is doing well right now. Yes, he is incredibly weak and certainly not in brilliant shape, but nearly all the medical stats show a small improvement and so, if we are to keep on keeping on... we have decided the time is now. Hamada grew up by the sea in Alexandria and although we are not returning 'this time', his passion is still for the 'Med' and I know this beckons him. So we have found a little island to visit.
Having always believed strongly, that to give power to the Multiple Myeloma, when it is our power, that should dominate it, is the only way forward. Hamada is a brave man, and he is a fighter, and a warrior, and yes, this is the right time... ok, it's a gamble, let's hope we make it and that it will be a very special holiday for him. I shall endeavor to make it so.


You gain strength, courage and confidence by every
experience in which you really stop to look fear in the face.
You are able to say to yourself,
"I have lived through this horror,
I can take the next thing that comes along"...
You must do the thing you think you cannot do.

Eleanor Roosevelt 1884 - 1962

I Will Not Be Broken by Jerry White.

It was with great interest that I read "White's" inspirational book after it had been brought to my attention. This book with it's clear steps on how to overcome life's diversities in the face of tragedy felt to me, like it had a place here on this 'blog'. Jerry White talks with great clarity of the unavoidable moment that divides our lives into the "before" and "after" at the point of tragedy or change. About what helps us to emerge stronger and perhaps wiser to reshape our lives in yes a different way, but while we search to recover we emerge even stronger. Many people have sent me mails and comments about my poetry on this 'blog'. About how they have helped in some way. "I Will Not Be Broken" appeals to me greatly and I think it will to some of my readers to.

"This is a compassionate book in " I Will Not Be Broken" Jerry White brings his insight and experience to bear expertly for those facing life's unexpected challenges"

I Will Not Be Broken is on sale @ http://www.amazon.co.uk.

My Clock - By Susie Hemingway

How peaceful in this pavilion
as the pendulum is free to swing,
I wish to guard these regulated movements
as you oscillate in free time.
I wish to savour your liberty of actions
your power of self-determination
I need to imprison and restrain this time,
to mend this clock of mine.


All Rights Reserved - June 2008

A Good Day.

It's funny how some good days just get better as they go along and when you expect them least. Hamada has been doing so well lately, more than we could have dared to believe, only a few short weeks ago. Still sleeping a lot but noticeably better. Yesterday we made the trip to Lincoln County Hospital for his renal check-up, and for a change we had a really short wait for the consultant, which was a joy. After all his checks B.P, Urine, Weight, etc, we had the quickest time with the Doctor, I can ever remember. Kidneys are holding at the 15% reading, Createnin level is better, B.P within the normal range, and the best words of all "I don't need to see you for eight weeks"! now how good is that? We do of course, have to attend the Heamatology Clinic as usual but how amazing it felt not to have to make that extra journey so often. We came out into the beautiful sunshine and felt on top of the world. We then had a nice walk, (well Hamada in his wheelchair) around Lincoln Town Centre, which is a very pretty place, full of young people from the University and the shops are great. We made a few purchases, the only advantage with a wheechair , I can see, is the ability to carry your parcels as well as the passenger. Having a nice lunch in an outside cafe, we so enjoyed our day. Simple pleasures but simply lovely.

Hamada Makes The Evening Party.

After not going very far in the past few months, Hamada was well enough to go on Saturday to Jenny and Ian's evening party at the Village Pub. He enjoyed a wonderful steak dinner, with salmon to start, and some very good cheese to finish. He was driven there, although it's only a few minutes away, but managed to stay for most of the party after. It was so lovely to have him join us all once again, mind you he did sleep for most of the next day - but an improvement never-the-less. Well done Hamada.

A Great Weekend And A Confusing Phone Call !

We had a wonderful weekend at "Hemingway " celebrating my sister and brother-in-laws Pearl Wedding Anniversary more about that on www.susiehemingway.com Hamada so enjoyed having all the family here and we had such fun with garden games and a great BBQ. We erected a large Marquee in the garden so that nothing would be spoilt, with our sometimes, rather odd weather. Jo sang for us and so did Manu which was just wonderful. Hamada ( who never smokes cigarettes) enjoyed a smoke of Apple and Mint sharing a'Shisha' pipe with Jo, taking him back to Alexandria, Egypt. For a small while Hamada looked pain free and very relaxed. It was a joyous day and created such lovely memories for us all.

On Tuesday I received a telephone call from one of Hamada's team at Lincoln Hospital, saying that the results of the last Bence Jones Test had at last been returned. This, contrary to the last reading, showed that the results were very good! It appears that the marker is again very faint indeed! We are not going to get too excited by this, our lives are up and down enough with all these tests and medical problems we face everyday as it is, although we really are tempted to do so. I am aware that this is a very difficult test to read at the lower end of the scales and that mistakes can be made at this level. Still with this reading now at 0.01 does that mean that Hamada could just be hanging on to his remission or not? (It's only been eight months since Hamada's Stem Cell Transplant)

Please all you very knowledgeable guys out there, I would be grateful to know what you think. We are not returning to the Haematology Clinic until July 3 when we will discuss this in full.

Lovely Weather .

Hamada enjoying the sun.

Pain and Marchpane - by Susie Hemingway

You're just as sweet as almond marzipan
like marchpane on a silver platter,
your feverish eyes in twinkling glimmer,
tell me the story, in never wasted chatter.

I look in on the tableau,and my eyes
can read your heart,
your pain is like a serpent,
a limbless reptile beast,
who once again returns,
when we expect him least.

Come, bring the Charmer and his pipe
to lure with his music,
to draw away the carrying pain
as he worms his way in coiling.

Come! see if I can sway this serpent!
and charm him from this 'marchpane'
I have the need to slay this beast
for my eyes can read your heart,
for my eyes can read your heart;

but YOUR eyes can see my soul...


All Rights Reserved.
Marzipan photo kind permission of Mitch Erickson
with thanks.

Interesting - Perhaps?

As I try to read all the latest news regarding articles on Multiple Myeloma from the Mayo Clinic. http://www.mayoclinic.org/ I thought this information might be worth passing on, it sounds at the very least, most interesting - take a look at http://www.mayoclinic.org/news2008-sct/4794.html - the intriguing contents are certainly worth a glance. Then of course discuss with your Specialist . I would be grateful for your comments on this.

Family Visits

What a nice long weekend spent at 'Hemingway' with our eldest Son, enchanting Daughter-in-Law and very special Grandson. Just a simple weekend gathering, with some good food, and good conversation. My lovely Sister and Brother-in-Law joining us too and Hamada was able to spend precious time with our Grandson, and listening to their laughter and fun was a complete joy. Simple pleasures create such vivid memories in a child's mind. Our Grandson understands how ill his Grandpa is, he has been told as much as we know, following every step of the way, often adding health advice of his own - "don't forget kidney beans Grandpa, to help with your kidneys"! We all believe this is the only way for him to deal with this major upset to his little life when the time comes. From the word go, even when he was quite tiny, they developed a very special bond together, spending many fun times and quiet moments in each others company, creating an enviable friendship. His little eyes always sparkle at his Grandpa's words and the fun they have developed together over these eight years delights him so. Hamada has many things he wishes to say to this little lad that admires him so much. May he have plenty of time to say them ...

Something To Soothe.

Hamada enjoying the Sun this week.

As everyone who knows me will testify, I am a great lover of music. Two very lovely songs have come to my ears this week, both will calm and soothe all who need it. So many of my friends who read this blog need such comfort I know. Do try the wonderful "Beloved" and "Coming back to Life" sung so beautifully by Minnie Driver. Both from her Album: Sea Stories.

** The Beast is Back ! **

Such sad news came to us yesterday at Hamada's regular clinic at Lincoln County Hospital. The result of the recent Bence Jones test - which is one of the markers used - is at 0.13 which means that, although Hamada underwent a Stem Cell Transplant last October he has only achieved six months remission! The beast is back and the Myeloma is active again. This is devastating news, and with the knowledge that at long last his white cell count is up at 4.05 and he was getting stronger against infections, we had so hoped his remission would have been much longer than this. Hamada has now been offered Velcade ( but not yet awhile), a proteasome inhibitor which is used for people who have previously been treated with chemotherapy and have relapsed. Therefore we will start once again with the battle to fight this wretched disease.

Two Years ~ Anniversary of Diagnosis by Susie Hemingway.

Two years, you made two years,
how simply sublime,
my days passed like a struggling river
pushing its direction to the sea,
the fast and furious moments sealed
in vaults of crashing tormented resolve
but stored with crystal clarity.

I stand on the islet like Ishmael
throwing all vehement thoughts in
the stream, torrents of anger,
this sense of sadness
I lay before you and
the currents carry them forth.

Two years, two years!
the river found it hard, the
dams and sluices got in it's way,
but it's power pushed them back,
do not give way, my troth intact,
my rage is rushing to the Sea,
for each tiny droplet of strength gathered
will fill the Ocean...


@ Copyright 2008

Photo Courtesy of Matt Rutherford

http://www.mattrutherford.com/ all rights reserved.

Update

As the UK bank holiday approaches, we wish all our friends and family a fun spring weekend.
Hamada continues well without any serious problems to attend to. His recovery from his recent bout with pneumonia has been very slow. Most days Hamada returns to sleep, waking only for lunch and then he gets up in the afternoon. I believe he is getting a little stronger, but cannot manage more, he is still very weak. He enjoys some television, light reading and an occasional game of cards, still managing to beat us! He does enjoy all his meals eating really well, he has recently put on some weight and has now reach a remarkable 58kg. He does not venture out much, only for the Hospital visits, but as the weather becomes warmer the garden will beckon d.v. Love to you all from us both.

Going For The Cure

I have just finished reading the engrossing "Going for the Cure" by Francesca Morosani Thompson MD, which although written in 1989 is an inspiration to any patient with Myeloma.
In 1986 Francesca Thompson -a 42 year old orthopaedic surgeon, wife and mother - was diagnosed with Multiple Myeloma. In February 1987 she became the first patient with Multiple Myeloma to receive an anti-body treated autologous bone marrow transplant. It is written in the form of a present-tense, first person journal. There are many valuable insights about life as a myeloma sufferer and about the process of a stem cell transplant. I found it uplifting and compelling.
Can be found at The International Myeloma Foundation Los Angeles. or http:// www.amazon.com

Rescuing Providence

To spur Hamada onwards a book written by Lieutenant Michael Morse of Providence, Rhode Island, called -Rescuing Providence -and signed especially for him, winged it's way across the pond this week. Michael Morse has been an EMT and firefighter for 16 years. A highly decorated Lieutenant in the Providence Fire Department, where he works on Rescue 1. This book contains short stories of 34 nonstop hours in the life of a big-city fireman/emergency medical technician. Hamada will enjoy reading how these brave men and woman make such a difference in people's lives. We too have much to thank our ambulance service for, in the saving of Hamada's life on two occasions, and I respectfully thank Lieutenant Michael Morse for his wonderful words of encouragement and lovely comments and all good wishes.
http://rescuing-providence.blogspot.com

Just a Little Update

Hamada's still smiling but,

Yesterday's visit to Lincoln Hospital, did not bring us much joy. Hamada's current blood tests show the white blood cell reading, much to our disappointment, has dropped back yet again to 1.05 and his Haemoglobin is at a poor 10.08 He is now to have twice weekly injections of Neupogen - Filgrastim - in an effort to treat the Neutropenia and help increase the number of white cells, which in turn will help his body to fight infection . Now look here white Blood Cells!do your work and just get out and fight!!

Secrets Of The Soul - by Susie Hemingway

In purple see the changing light
the stormy days to passive nights,
in secrets of the soul display
a campaign like tinders falls astray,
and yet, as seasons daily change
you adjust to fight on moving range.
In repetition all a part
this set-piece for you
that's learnt by heart.

I watch thee, I watch thee,
intrepid, fearless
and monumentally brave,
to eagerly face another day,
this gargantuan task,
in febrile waves you make,
the tiny steps you sweetly take.
This rape upon your ravished frame
comes back in haunting waves again,
this personal onslaught so powerfully dealt
in secrets of the soul displayed,
the campaign like tinders falls astray.

And yet in courage you edify
and make my heart to often cry...


@ Copyright 2008

What a great Site !

A really special web-site for all sufferers and carers of people with Cancer can be found at http://www.whatnow.org.uk/
A great place to meet and make friends with others, who have also been affected in some way by Cancer. This most informative site has some great blogs, videos, people to meet, forums for friendly chats and some wonderful photos of celebrities from Mary McCartney, showing pictures of Darcey Bussell, Jude Law, Sir Paul McCartney, Gordon Ramsey and more.
This great web-site is certainly worth a look. I do recommend it.

The Fight Goes On

Almost two years ago my beloved husband Hamada was diagnosed with Multiple Myeloma, a Cancer of the Plasma Cells. He was informed that he would not survive longer than six months. Never accepting, we have been fighting for almost two years to push back the time he has with us, following every procedure and every possible treatment, and doing everything we can to help and support him. This dear man has such courage, dealing with his pain, with no complaints. A lesson for us all I think.

I have written these poems to convey my feelings and to help me to understand why this has happened to this kind gentle Egyptian, who is still quite young. He never says "why me" perhaps if he did, it would be easier to bear, So we continue our journey with hope and the joy we have just being together - he is very tired but still he smiles that beautiful smile every single day.

The words of the wonderful poet KHALIL GIBRAN say it so much better than I can...

When love beckons to you, follow him,
Though his ways are hard and steep.
And when his wings enfold you, yield to him,
Though the sword hidden among his pinions
may wound you.
And when he speaks to you believe in him...

~

How wonderful - some good news for us.

As I sit at my desk listening to Luciano Pavarotti singing 'Ai Giocchi addio' from Romeo and Juliet, the phone rings and it's our lovely Doctor from Lincoln County Hospital with the latest blood test results for Hamada. After the short course of 'Filgrastim'' the results show a very good improvement, how wonderful is that - so now with the sun shining through my window and this beautiful music - all is well in my world, for the time being.

A Great Website.

Myeloma sufferers take a look at http://www.cancerbackup.org.uk/ and click on Myeloma, a great site for simple understanding of Multiple Myeloma.

Update on Good Friday

This morning I went to Lincoln Hospital to collect Neupogen -filgrastim Injections for Hamada. These have been prescribed in an effort to help with Hamada's, disorder of Neutropenia, a condition in which the number of white cells are extremely low, this of course leads him to suffer from repeated severe infections. We hope the Neupogen will help to increase the number of white cells, which in turn will help Hamada to fight these infections. He is weak and tired but still smiling and never ever complaining!

Further Update

It has been a challenging time since Hamada returned from Lincoln Hospital and a slow recovery once again from his second bout with pneumonia. He has been extremely weak and suffering with anaemia which is common in Myeloma. Hamada's kidneys are unable to produce a special growth factor, known as erythropoietin, this stimulates the bone marrow to make red blood cells. He has a weekly injection to help with that. He is constantly tired but makes a tremendous effort to get up for longer periods each day. He has now had another bone marrow aspirate which involves inserting a fine needle into the bone marrow space at the back of the hip bone under local anaesthetic, and they aspirate/ suck out a few bone marrow cells to stain and view under a microscope. We wait now for ten days for the results once again.

The following is an extract from a wonderful poem written by Arthur Hugh Clough and brought to my attention by dear friends who live in our village, it is a wonderful poem of courage and hope, in the face of diversity and for folk who struggle daily, it is I believe a must to read.

Last two verses from - Say Not The Struggle Naught Availeth.

For while the tired waves, vainly breaking,
Seem here no painful inch to gain,
Far back, through creeks and inlets making,
Comes silent, flooding in, the main.

And not by eastern windows only,
When daylight comes, comes in the light;
In front the sun climbs slow, how slowly!
But westward, look, the land is bright !

~

Update

Hamada was allowed to come home from Lincoln Hospital at 6pm last evening. After spending the afternoon receiving blood platelets, he was ready to go. He was delighted to be home again and after inspecting his new all 'singing and dancing' bed, which proved very successful for him, settled down to rest. As he has pernicious anaemia now, he is very weak, but we have seen a good improvement over the past two weeks. He is to continue with the Antibiotics for the pneumonia and we must return to Lincoln Hospital again on Monday and Thursday of next week for further checks. On the 24th, Hamada will have another bone marrow aspiration. Hamada sends his very best wishes to his friends and to his dear family who have once again been supporting and encouraging him.
He also thanks his dear family in Alexandria for their recent telephone messages and for the comment under the poem - 'You Elude Me'

Update

Hamada has made very good progress with his fight against his second bout of Pneumonia and is now considerably better. We are hoping that if his blood count is good enough today, he will be allowed home perhaps at the weekend. It is really better and safer for him to continue his recovery from this infection at home, but once again we thank all the wonderful Doctors and Staff at Lincoln County Hospital, Waddington Unit for their superb continuing care of Hamada .

Update.

Hamada has been moved to a side ward in the Waddington Unit at Lincoln Hospital as he is today, 'Neutropenic' meaning his immune system is compromised due to lack of white blood cells and 'reverse barrier nursing' has started. The pneumonia seems to be a good deal better and he is quite cheerful but this is indeed a setback.

Hamada Update

As we all recover from the Earthquake that shook a large part of the UK the epic-centre being in the next village to us, it appears that Hamada and Lincoln County Hospital were not too affected by the quake. Hamada appeared a little better yesterday, although it's really difficult to tell. The Doctors do feel he is going in the right direction. He is able to speak a little again and seems to be responding to the drugs and antibiotics prescribed. He was so happy to see Jenny and I when we arrived, a good sign I feel.

Update - Tuesday 26 2008

Hamada was admitted to Lincoln County Hospital, Waddington Unit, early yesterday morning with a high fever and it was confirmed today that he does indeed have pneumonia once again. I had monitored his temperature throughout the Sunday night hourly, and made a good judgement call in the early hours of Monday - he is comfortable but extremely ill again. I ask for the power of your thoughts and for those who believe, your prayers.

We Dance Again ~ February 2008 - Susie Hemingway

No wretched life from us can take
the steps of love the notes we make,
the frail frame that yearns to try
the arms that lift, the eyes that cry,
tiny steps are all you need
to close your eyes and dance with me
to swirl and sway, to waltz and salsa
maybe soon - but not today,
still just to hold and smell your skin
is all I need, not spin and twirl
your arms are weak your legs move slow
but in this room the music flows
do you hear Count Basie swing?
piano notes that damp your skin
just as snow when flakes begin
to see you there upon this floor
to hear that Sax in blues begin
to twirl and spin,
close your eyes and drift again
tiny steps are all you'll need
to turn on floor, so close to me
for I will hold you never fear
and as we dance along this year
tiny steps are all you need
so close your eyes and dance with me...


@ Copyright 2008


We Dance Again - Now having music composed by the U.S.A band 'DAYE'
and chosen by http://www.rescuing-providence.blogspot.com as a poem for their site

Extract taken from a verse by Dougie Maclean and sent to me by dear friend Steve.

Over the mountains and out across the sea
on weathered wings he soars into the edges of the breeze.
Over the water and out across the fields
with eagle eye he watches he's seeing what our hearts can never see
and he speaks to me.

Life touches nothing, life teaches what it can
It can hold us all to ransom, the woman and her man,
over the mountains and out across the trees
on weathered wings he soars into the silence, on the edges of the breeze,
and he speaks to me.

Dougie Maclean.

A Walk In the Sunshine along the 'Corniche' at Sutton-On-Sea. - Jo, Hamada and Susie.

Hamada and Susie enjoying the wonderful Village Sunday Roast

Hamada Update.

After a very difficult fortnight for Hamada, when he was having quite severe pain in his lower back making moving so painful for him, and now being at the top of the pain medicine allowed, because of the danger to his failing kidneys, he reach a plateau on thursday and over the weekend improved enough to go to our Village 'Roast' Sunday Lunch, this is a really great affair and always enjoyed by all who attend. The weather was sunny and so inviting for the walk to the Village Hall, Hamada uses a wheelchair now, which makes it easier for him. As we had Son Jo and a friend staying at Hemingway, we made our procession on this almost Spring-like day to engage in this lovely occasion . Hamada was so pleased to see all his friends from the Village and so enjoyed the day and the delicious food. He is still sleeping rather a lot, but is cheerful and contented when awake. Having family staying this weekend was lovely and Hamada joined us several times for cards and has not lost his touch! He asks to send all best wishes to all our friends overseas, (especially in Alex) who are thinking of him and he thanks them for the recent emails and calls.

POEMS .

21st January 2008 Sent from my friend PIP in Tasmania Australia.

Poems have magic, especially when they come from the heart. They can touch us, move us, delight us, enlighten us, make us laugh, make us cry, and both soften, and enrich our deepest memories.

Poetry is the tie that binds one stranger to another, often in friendship, sometimes in love, always in better understanding. Hope your day will be wonderful.

Luv Pip

Seasons Pass - January 2008 - by Susie Hemingway

So seasons pass all eight of them!

from calm to gusty days,

from shock and realisation, to

shock and back again,

you can't stop the rain from falling

but you can catch it in your hands

and, in so doing -

you cup life within your palms.

In soft and gentle days of Spring

to gather forth a plan,

you breathe again and understand

in veiled obscured, shifting sands,

the changes, as in flowers grow

unfold in prudent ways,

but life will never be entirely, quite

the same again.

So Summer came as some did say?

but we preclude most all these days.

In fear and sacred keeping

to grasp and hold at bay

but sabre swords do block our way,

with dragons at our door,

and Summer passes like poppies fade

amidst golden sunlit fields.

As pears that do not ripen

affirmation takes it's place,

when Autumn turns to gold

my mind trenchant and keen;

I conquer many fearsome things

subdue and overcome, and as the mists

arrive, how precious days become...

So Seasons pass, all eight of them

and two years fly as seconds do,

the snow lies on the ground -

as hearts can only do,

and as I stand before thee

in Grateful Gratitude, to

glean and gain as red berries do,

to start the Year anew...

@ Copyright 2008

Dreams and Reality January 2008 - by Susie Hemingway

Dreams and Reality.

Dreaming in the ribboned night,
of Planets, Stars and all things bright
in velvet hues of inky black,
the smoky mists that take me back
to cosy nights and 'Welcome' mats.
In scarlet colours of my mind
such simple things that still survive.
Dreams that are the very best
sweet smelling babies in their vests.

Crystal eyes in dreams of thee
the way together, to simply be.
Gentle hands in swirling clouds
the brain that whizzed and wondered how?
Such purple days of solitude,
in quiet temperate harmony.
The thoughts of many twinkling flights...
return to me in silenced nights,
times of midnight Desert walks
the smell of incense in the air
times in life with sensual flair.

Close your eyes, dear one for me
and dream of 'midnight blue' the sea,
dream of opal shell-like sands
along Agamy's* mystic land.
Rest sweet one and lose your pain
for I will try another day,
fortitude comes in swirling clouds
in sheets of drizzle around me now.
If I could find another way,
then I won't have failed again today.


*A beach on the outskirts of Alexandria Egypt.

@ Copyright 2008

What a Lovely Comment !!

This extract taken from Hemingby Village News Letter.

On a personal level I would like to thank Susie for the fabulous evening enjoyed in the village hall on the occasion of her 60th birthday. It was a wonderfully happy evening for all who attended and although it was sad that her husband Hamada was not able to be present in person I am sure he was there in his thoughts as he was in the thoughts of all of those present. It was however fabulous that Hamada was able to be at the Christmas Party. Joe Calzagy the undisputed super middle weight champion of the world has a reputation of being a superb boxer and was recently winner of the sports personality of the year award but he is not remotely in the same class as a fighter as Hamada and Susie to whom we extend our best wishes for the coming year.

Bob Parish ( Chair )

Update.

Hamada had a very good Christmas managing quietly to join nearly all the fun, eating well and participating in card games and visits to our village pub on several occasions for more than one Christmas Lunch! It's lovely to have visitors to our home again but we still check carefully for colds, well as much as we can! Infections are the most singularly important consideration still.

Just before Christmas we visited the Haematology clinic at Lincoln Hospital for the results of Hamada's 'Bence Jones test' we knew it was unlikely that all cells had been captured and the test shows that a small amount still remains. Not quite as good as we had hoped. He will have another test during the next month or so and this will be watched carefully for the increases.

Hamada is still weak and requires a lot of sleep and much care, still everyday there is a tiny improvement - his hair is growing back and he now has a soft downy covering. He does suffer with back ache and must commence a little exercise to improve the supporting muscles, starting with a daily walk around the house.

He eats well and is contented with a quiet life I think we have a guardian angel as Hamada seems to have got through these past weeks since transplant remarkably well. Thank you all for all the wonderful letters and good wishes for a better 2008 - it was a tough 2007 but we made it. Now we hope for a good spell and the Spring to come. Our love and best wishes to you all.

Latest Update

Happy Christmas to Everyone.

Hamada continues at a good pace and did on the 9 December managed to don suit, collar, tie and fedora with a little help, to attend our village Xmas luncheon with a grand crowd of seventy five. It was a fabulous affair with a superb lunch of turkey and all the trimmings which Hamada enjoyed immensely. Our wonderful villagers welcomed him back for his first social outing in many months. It was so lovely for him to see so many friendly faces and many of our great supporters.

Hamada still rests for most of the time, he is still extremely weak and has some difficulty moving about, but getting up now in the early afternoon to enjoy a little television or to read. On bright sunny days we now go for a drive across the wolds, wrapped up well ,Hamada really enjoys this and very slowly he is managing to do more for himself. We are still cautious and as careful about infections as we can be. He will visit with the Haematology department next week and we continue to hope that the blood counts and readings will be good. My best wishes to you all.

Then and Now - by Susie Hemingway

Dare I dream of Christmas time

of Robins and of Christmas songs,

or maybe yes? of spring beyond

when I see that journey made

with courage and no other way,

I dare to dream, of walks we'll make

or sitting by that sparkling lake.

Do I think of then and now

can I dream, then just how?

I start to hope that back you'll come,

from heavy heart as joy becomes,

to fill my life again with hope

as slowly as a bud unfolds,

you're stronger now, oh! the hope.

with every day I look at you

to see your heart returning too,

to just believe we have the time

as such happiness unwinds, to form

and shape like seasons do,

the time together, just us two,

dare I dream of Spring beyond?

So hard the journey you have made!

just to see another day,

just to spend the days with me

in quiet 'turquoise' harmony,

dare I dream of then and now

of Robins and of Christmas songs

or maybe yes? of Spring beyond....

All rights reserved.

Update.

Really good news this week, at Hamada's regular check-ups at Lincoln Hospital. all his readings and counts are up! The Doctor was really pleased at his progress and now believes it will not be long before Hamada can mix again and go to public places and start to lead a more normal life. This is such wonderful news for us, and we plan as our goal, to go to our Village Xmas dinner in two weeks time, even if it's for a short time - what an achievement that will be! This will mark the start of a more regular life again. He still cannot walk very far and his energy levels are really extremely low. He sleeps straight again after breakfast for a good part of the morning getting up later in the day, but we are managing to extend the time he is up and awake. We are now thinking of Christmas together and of perhaps dare I say the Spring, something we did not believe a few months ago . Thanks again to all at Nottingham - have you any idea what joy you bring to us? to all our supporters, family and friends, who keep up with Hamada's tremendous journey . He sends all best wishes to you all, as i do .

It is Not Love - If You Must Ask - by Susie Hemingway

What is love, I'm often asked
my answer is, it's not a task,
It's when you only have to glance,
to make your heart turn in a trance,
when eyes cannot turn away
and when you yearn from day to day,
your soul and mind in endless tune,
it is not love - if you must ask.

What is love, the girls do ask,
when you can trust another soul
with secrets you have never told,
when your mind and heart can blend as one
and when silence, a delight becomes.
When you know that you would walk,
a thousand miles, for eyes and soul,
and just one glance,
it is not love - if you must ask.

What is love, the boys do ask,
it's when you care more than yourself,
as in your busy days you'll find, and
when you try another kind!
your mind refuses, turning back
although you try another track,
your heart refuses, to let go,
don't ask me! for you will always know
it is not love - if you must ask.

It's when you find the strength that lies
in waiting for the sun to rise
across your soul and heart and mind
a love so pure, the only kind.
It's when in everyday, a joyous song
a heart that sings, in sweet refrain,
a closeness and a precious gem,
just wait for love, no other kind.

It is not love - if you must ask.


dedicated to my youngest son Yousef - October 30


@ Copyright 2007

It is now five weeks since Hamada had his 'stem cell transplant' and he is proceeding well. Yesterdays trip to Lincoln Hospital was a really good visit, with blood counts up nicely and kidney function so improved now at 15 and with the news that next Wednesday they are to remove Hamada's central line (Hickman) which will be done at Lincoln, one less thing to worry about regarding infection. He is also starting a 24hr 'Bence Jones test' next Tuesday to test again, the levels of Bence Jones protein in the urine. This will give an indication of how well the transplant has gone. The Doctor seem very pleased with progress so far, reminding us again for the need to be careful about avoiding any infections , Hamada is still wearing a protective mask when entering the Hospital and thoughout each clinic- the single most important piece of advice, hospitals being most dangerous for picking up infections from not only patients but visitors also.

Hamada is still extremely weak and very weary always but he is slowly increasing his food intake and managing to say awake for a little longer each day now.

The above photo shows Hamada trying on his new 'fedora' which was brought by our son Jo in readiness for the spring and the walks we shall have together - 'In Sha'allah'

Update at 3 November 2007

Hamada is continuing well. His first check-up was carried out at Lincoln Hospital last thursday, where he continues to have his 'bard' line flushed, if he continues well, this will be removed in due course. Then he had bloods taken and although not brilliant, the stem cells do now have a reading of 0.9, which is going in the right direction.

Hamada remains happy and glad to be home, he is extremely weary and has bouts of nausea which slows down the weight gain, still he is now managing small frequent meals and I am pleased to see him eating a little of his favourites. He needs to build on his weight currently 55kg. he sleeps late in the mornings and when awake has been enjoying the view from our windows over looking beautiful farmland and this lovely late autumn sun. He is then glad to be back in bed during the early evening. When visiting the hospital Hamada were a protective face mask for the whole time he was there (a small tip for our friends in the same position). We felt this to be so important to protect him from any infections as he is so vulnerable during this recovery period.

He asks me to thank you all, for the great messages and calls, emails and letters, for all the best wishes and encouragement from everyone following his journey.

Update

GREAT NEWS!! After getting back the daily readings, if was decide late afternoon that Hamada, after seventeen days in The Centre For Clinical Haematology, could return home. we made the journey to Nottingham - late yesterday.

Late afternoon he had another red-blood cell transfusion and after leaving most of his hair there! we took him home.

Thanks to Prof. N Russell and his team, what amazing work they do. Thanks also to all the staff on Fletcher ward for their kindness and immense help during this time.

Hamada will now be closely monitored, he still has some sickness and will have frequent check-ups at Lincoln. Now we pray this will give him the longest remission. Thank you all for your wonderful good wishes and support, how lovely to have him home.

Update.

Hamada continues quite well. Count now at 0.3, it did go back to 0.1 it's normal for it to go up and down for a bit to start with. We hope for a higher reading later today. He has received more platelets to prevent anemia and is a little sick this morning but the drugs get that under control really quickly. His lovely grey hair is falling fast now, so I have a nice selection of hats ready to keep his head warm. He has done amazingly well so far. When the count reaches 0.5 we hope Hamada will be allowed home.

THE BEST NEWS - UPDATE.

The best news today Sunday 21 October 2007 - we have been told today that Hamada has a count of 0.2 which is such good news. He has received some platelets, and is very tired, sleeping a lot, which is quite normal at this stage but he is bright and cheerful when awake. We understand that he may be able to come home when the count reaches 0.5 but of course he will require frequent check-ups during the early post transplant period. All his harvested stem-cells were use in this transplant, so now we hope and pray Hamada will be successful with a long remission. I know it's early days but I so wanted to share this news with you all.

A Teardrop From Your Eye - by Susie Hemingway

I saw the teardrop from your eye

you turned your head, a little sigh,

you feel your pain, but seldom say

"yes it's been a difficult day"

the courage of this daily battle,

you're brave and steadfast, it's your way

never letting in the sadness that

begins at dawn and ends at sleep.

I saw the teardrop from your eye

it made me angry, it made me cry.

The changes you accept so well

must be for you, a living hell,

to not be steady on your legs

to feel so sick, you need your bed.

You sit and drink the world right in

in quiet ways, you always sing,

you smile as if a secret brings

a gift of happiness within.

I saw that teardrop from your eye

it made me angry, it made me cry.

Your quiet ways and inner peace

accepting all, not giving way

just hoping for another day.

To sit and be, in joyous calm

not asking for a magic charm,

if it were me, I'd scream and shout

your so determined, there's no doubt

such dignity, such pride, but

I saw that teardrop from your eye

it made me angry, it made me cry.

When all about you rush and bother

you sit and watch and quietly be

your love for me so clear to see,

never once do you complain

I see your passion, it never wanes,

you watch and wait, but never say

"this has not been, the best of days"

your daily thanks and generous praise,

they always take my breath away.

I saw that teardrop from your eye

it made me angry, it made me cry...

@ Copyright 2007

Update 16th

Hamada appears a little better today, the Doctor informed us that the blood tests show he had a mild form of septicemia, so now that the antibiotics are doing their work he feels better and is back with us again . Keep up the good work Habibi.

Update - 14 October 2007.

The past few days have not been very good for Hamada and we have been most worried. As the High-dose Chemotherapy finished and the next procedure started, (the infusion of stem cells) Hamada became distressed, very confused and disorientated. The Doctors believe it could be an infection starting and have place him on antibiotics. It has been a most difficult time for him and with a back sore from the bone marrow aspiration, which is to read the measurement of Myeloma and is performed again six weeks after completion, to see how successful this procedure has been, it has all been rather too much for him and his mind has been severely disturbed. He found it difficult to talk and comprehend, was agitated and not the normal placid Hamada we know. Yesterday he seemed somewhat better which was a relief. During these days after transplantation, the reinfused stem cells migrate to the bone marrow and begin the process of producing replacement blood cells. Now hopefully the stem-cells will start to produce these new blood cells, a process called engraftment, this should happen during the next 10 to 15 days. Until engraftment is complete Hamada remains susceptible to infection. A great team at Nottingham working hard for him - thank you all.

Update. - A Stem Cell Transplant - 10 October 2007

Hamada started his Stem Cell Transplant after a restful night at Nottingham City Hospital. The high-dose chemotherapy drug melphalan was started yesterday. Now just one days rest and his stem cells will be infused back into his bloodstream. He is rather sick today which is to be expected and has been given drugs to help with this. He has had some prior hydration to help and support those precious kidneys and the renal department is working with the transplant team.

Hamada is a little emotional today and the next few days will be most important for him and until engraftment is complete we must be so careful to avoid any infections and take precautions before entering his room. He really is in the best possible place and we are so pleased he has made it this far in his fight with this difficult disease. I will continue to update - I know that many Multiple Myeloma sufferers are following Hamada's journey. Best wishes to you all.

Thank You All.

Hamada wishes to thank you all for your support and many messages of good wishes for his forthcoming 'Stem Cell Transplant' procedure, starting on Monday. He sends his love to you all and says he is ready to do battle now! I will of course update on here for all our friends worldwide and for his family in Egypt. Good Luck Habibi.

The Spiders Web - by Susie Hemingway

As the spiders web draws you in

your eyes flicker becoming dim

I reach in terror to ease your pain,

but however I work, there is no gain.

the mist around your tired face

draws you gently to that place.

don't enter the web that pulls you close,

stop spinning spider, leave your prey.

We fight and fight this daily battle
and hate the spider and its chattel
who tries so hard to lure you,
so easy is that gossamer thread
that wants to take you from your bed,
floating in the calm warm air
let me brush your silver hair,
go back spider, let go your grip.


Go take your 'arachnid' ways,
and spin somewhere another day
go find a substitute not him
and leave this gentle quiet soul
go spin your large white wheels of lace
that ensnare and strangle in their wake,
go back and think again,
for this is one, you'll never win.


Stop spinning now, don't draw him in.
leave him quietly, to sleep at peace.
go find your other prey to squeeze
for I don't like your weaving ways
and this one has more sunny days.
You nasty creepy malignant beast
leave him be, go make your web
your threads that spin and crept within.


So easy is that gossamer thread...






All Rights Reserved
@ Copyright 2007

Great News At Last!

Such good news today, after a consultation with Prof. Russell - the date has now been set for Hamada's stem cell transplant. Hamada will enter Nottingham City Hospital under the care of Prof Russell on the 8 October. How we all wish him every success with this.

If I Could Dream You Well Again - by Susie Hemingway

In dreams I make you well again

in the quiet of the night

you run with me, in endless flight,

far away in thoughts of long ago

we run on beaches sailing to

deserted islands, strong were the arms

that pulled the boat ashore.,

In dreams I see you there once more.

In dreams I make you well again

your long limbs brown and strong,

the warm breezes puff at our skin

we swim in blue waters

you touching my nose and cheeks,

the droplets of crystal waters

dry with salty streaks,

In dreams the picture never alters,

In dreams I see you there once more.

In dreams I make you well again

to walk the sands with me

you standing tall, with eyes so clear

from El Salam* unto the sea,

to see the lighthouse in the bay

for you to breathe that salty air

for you to brush my long fair hair

In dreams I see you there once more.

In dreams I make you well again

in the quiet velvet of the night

the smile that changed my life

from dusk until the light,

in dreams you dance with me

on islands in deep blue seas,

close your eyes and dream with me

see those 'najoods' that stand like waves

see those golden seas of sand

see the place you held my hand.

*najoods - Sand dunes.

*favourite hotel

@ Copyright 2007

Do You Remember Paris.

Do you remember Paris

so many days ago,

we ran in the rain

me in the highest heels, and

you never letting go,

dodging busy bustling streets,

past the Galerie of Fine Arts

wishing we could buy the shop,

do you remember Paris.

The tiny hotel you'd chosen

with a lift for only one

we squeezed tightly together

leaving our baggage still to come,

we laughed, as we rose to the attic

wiping the rain away,

and in our little shuttered room

we hid ourselves away,

do you remember Paris.

You sent for rolls and coffee

from the cafe just below

and as the lights came on

the room took on a rosy glow,

you say the smell of coffee

takes you back to that little room,

that, high over-stuffed bed,

the faded flowers, in candle gloom,

do you remember Paris.

We mixed the 'Coco' and 'Givenchy'

the hearts so full of love

the heady cognac, just to warm us,

the courtyard full of doves,

it was our Paris, not the Eiffel

or the Champs-Elys'ees

or even the Louvre

just in the latin quarter, a tiny

hotel for two.

Do you remember Paris ? ...

@ Copyright 2007

A Little More News

Clinic at Lincoln Hospital this week has shown a slight reduction in the 'Bence Jones' protein readings, dropping by .6 it's not much but it's certainly going in the right direction again.

Hamada has felt really good this week and has been enjoying the garden and the lovely weather, his white blood cells are now very low, causing neutropenia - cytotoxic chemotherapy has a tendency to induce neutropenia, so we must remain alert for symptoms of infection. Still we are very happy that a reduction has started again. Thanks again to all our friends and their good wishes - we send love.

More Chemotherapy

Hamada is continuing with the Chemotherapy during the whole of August and September in an effort to reduced the 'readings' once again and then hopefully proceed to transplant at the end of September. His white bloods cells have reduced so he is more prone to infections and we must be careful to reduce all risk of infections duing this time. However we do try to carry on with a normal lifestyle.

A Good Improvement

Hamada has made a good improvement over the past week - very weak - but so much better.

Now starting his next course of 'Chemo'. Many thanks to Amr our Nephew, who made the journey,thanks to Jo, to see his Uncle and spent time with him having so much fun catching-up and chatting together in their 'Arabic' and playing backgammon together. It was a wonderful tonic for Hamada. Even managing a drive to the beach and a walk! with the boys support.

Home Again

Hamada and Ian

Hamada returned home after an eight day stay in Lincoln Hospital, he is still weak but so much better after the good care and attention received . Thanks to the amazing team in A and E - also to Mr Bowen and particularly to the young house Doctor - he knows- without naming- who went to extraordinary lengths to help sort out the many problems that arose - especially with the medications. Thanks also to the great team of nurses on 'Dixon', we could never do without your continuing patience and superb care. How grateful we are.

I Wish I Could Untangle You - July 2007

See twinkling eyes that dull with pain

eyes once bright as fire flames

we juggle pills to make it wane

with every day I cry for you

moving now is hard to do

limbs get stuck refusing to

unbend, and move as graceful should,

I wish I could untangle you

dreams that see you run again

walk the miles that never end

play the games we used to do

dance forever, just us two

this once strong man

who laughs with me

now has morphine in his tea

instead of 'bubbles' in a glass

thinking of sweet days gone past,

still we can dance, if very slow

so legs don't stumble, I'll

not let you go, put on

the music, hold me tight

and yes, it still feels very right

we'll play the soft and gentle songs

the ones you love, we'll float along,

I'll watch your singing eyes

and wish I could, until I die,

I wish I could untangle you

I wish.... I could untangle you

@ Copyright 2007

Back To Hospital !

After a good consultation with Prof Russell and feeling happy about the plans for further treatment, Hamada was very unwell during Tuesday night, and after rather a panic ,was rushed at 4am by ambulance back to Lincoln where he has been re-admitted. He is stable and has been sedated for most of the day he will be there until further notice, a check by the Haematology Team today will tell more. Thank you to the wonderful paramedics who once again did a sterling job, so fast getting to us and so very efficient

Lincoln Hospital

A better visit today at Lincoln Hospital, a consultation with Prof N Russell of Nottingham City Hospital prove to be more promising. The Professor would like Hamada to continue with the current Chemotherapy regime for two more monthly cycles and hopefully reduce the levels again, to proceed to a stem cell transplant in late September, as he does have enough stem cells collected now. This has really pleased us,as we have a date to work towards. Hamada feels far more positive this evening and that works for me.

Thanks to all the kind staff we met again today- they all work so hard- and lovely smiles are always found for all their patients. Our thanks to you all.


Again thanks for all the recent messages from friends and relations in different parts of the globe, you never fail to amaze me with your great wishes of encouragement, they really do help to keep Hamada cheerful and they do lift his spirits so.

And The Music Played.....

So you found that quiet place
where lights were dim
and I was dressed in lace,
this boulevard of strangers
just the perfect place,
the candles melted slowly
Oh! your handsome face.

You found that quiet place
when you took me in your arms
the slowness of the music
you, and all your charms,
I'd left my heart behind me,
but then the music played.

So slowly we turned, on
this tiny wooden floor
I believed I had been here
just once before,
the closeness of you, in
this boulevard of strangers,
and yes, the music played.

So you found that quiet place
with little tables and wine to drink
nothing more, no broken dreams,
no promises, or time to think,
just you and some magic
and the music played.

So I left my soul behind me
and suddenly, I was free,
and the music played...

@Copyright 2007

The Daily Task !

The daily task and extra to this! are all the Chemotherapy Drugs Hamada is taking everyday in his battle to overcome his illness. Hamada is a little better this week but he has bone pain, which we are getting almost under control. He thanks everyone for their lovely messages of encouragement. he remains cheerful but thoughtful.

Such is the Pain Of Love

I drive across the fields of gold
the tears upon my cheeks not old
to leave him in this place so strange,
such is the pain of love,

this quiet gentle smiling man
whose eyes can hardly understand,
I breathe his courage, I live his fear,
such is the pain of love

he looks at me with eyes of love
to find a power from above,
I cannot fail, I cannot falter,
such is the pain of love,

why oh why, this wretched time
should pick this dear and sweetest man
when worlds have met as ours have done
for all of this to be undone
such is the pain of love,

but still we'll fight and fight
to push the boundaries back,
we'll lean together to gain more strength,
to learn and listen, and to wait,

this is the pain of love...


@ Copyright 2007

Today from Jewel, Long Beach California US

Today, at 10.45 p.s.t. at Thubten Dhargye Ling approximately 100 friends will say prayers for Hamada.

We thank you all.

Yesterday More Bad News,

It was not a good day yesterday with a further visit to Lincoln Hospital, and after a terribly long wait, it was decided after consultation that the best course of action at this time, was for Hamada to return to Chemotherapy. To try to reduce the Myeloma cells and get them to a lower level to proceed to Transplant - the cocktail now includes , Cyclophosphamine,Dexamethasone, and Thalidomide and all the extras that go with that !
He also has some fractures of the vertebrae again and this causes some collapse of the spine which is so very painful . We have good drugs that cover the pain well, but he walks slowly and has lost more height. All these thing make me so sad- to see this lovely gentle kind man, suffer in this way. It is without doubt a despicable disease.

Not The Best Of Days.

It was another visit to Lincoln Hospital today. A busy one with Nephrology first, then on to the Alex Day ward for very nice nurse Michael, to take bloods and 'flush' hickman line. Hamada also had to complete a small part of a Renal Impairment Trial Study for the University of Leeds. This he completed, then on to the Haematology Dept for a discussion on 'pain management' regarding Hamada's very painful spine. We now have a new 'cocktail' or at least a different way to give them! Also we heard the bad news that Hamada is no longer in 'remission' this means now that hopefully the transplant will take place sooner than later!. His readings of 'Paraprotein', an important marker of this wretched disease, have risen. Also the 'Bence Jones' reading -which shows the presence, amount, and type of abnormal myeloma protein in urine - another important test, has doubled. This is just what we did not want to hear. He has also had further X-rays to his back to make sure there are no more 'lytic lesions'. We are to return on Thursday to discuss all these issues. We shall endeavor to keep on fighting.

Stay and Sleep

I can hear him sleeping

I can hear the storm

it's fierce ebony clouds

scudding, it's yellow flashes

spend themselves against

my window pane.

Trees crashed, branches fell,

and my heart no longer knew it's way.

Still he slept, his

gentle breathing at odds with the

violence, that shook my soul,

Can you hear the storm ?

is it inside your realm

is it beyond your pain

is it beyond mine.

The sky lit and intruded

into my domain,

It's clear shadows against my walls,

a dark mark against my heart.

Wake and listen

do not enter that sphere

no, stay and sleep

quieten my province.

Stay and sleep...

@ Copyright 2007

A Dedication To Our Friends

The following poem is dedicated to our very dear friends - Zena and Pieter - who live so many miles from us now - but we shared a life in the following place, mentioned in this poem. They are so constant with their calls and encouragement, that we feel they are never far away. We thank them for their strong friendship and dearly hope to have such fun, as we did in those days, when we meet once again. Thank you both and bless you for your kindness.

Oasis Town - Al Ain - U.A.E.

It's splendid vista way up high
the Jebel Hafeet* in clear blue sky,
my lover took me to this place
where snaking roads make hearts race,
this flower bordered oasis town
set as the Rub Al Khali *surrounds.

A magic beauty there for me
the middle of the sands you see,
grand marbled palaces you'll find
with fountains and Bedouins inside.
Mercedes and the finest things,
streets of gold and diamond rings.

Down town we found a natural spring
and handsome swarthy Arab friends,
in long white robes with beads to hand,
such beauty, of their falcon's wings
this desert world it's secrets bring.

Always we dined on tasty things
lamb in soft white bread you see,
lovely glasses of sweet mint tea ,
they welcomed us on desert sands
in tents, to take us back in time.

My lover with the charming smile
said we should linger for awhile,
to sit and sample 'sweet delights'
we did, long in the twinkling night,
and the warm 'Kamseen' did blow for us.

The silver platters of fruity dates
were passed with hands of love not hate,
the dark fringed lashes on dark brown eyes
could melt a heart in candlelight,
the over-whelming scent of musk
made 'giddy feelings' turn to lust.

This magic sensual desert town
with gentle friends that we had found.
The merging of the old and new,
this quiet love I found in you,
our little child with soft brown face
his sturdy body in a race, to grow
and blossom in the sun.

This much loved little Arab boy
who came to us with so much joy,
he played amid the palm tree glades,
looking for a little shade.
We wondered in 'Burami Town'
as riverlets sparkled through the ground.

The smell of oranges hanging there
the heady scents of different air.
In bustling market souks we stayed,
yes, how I loved those desert days
with our dear friends their gentle ways.

This green and floral oasis town
where we found love, the sands surround....

* Jebel Hafeet Mountain range.

* Rub El Khali Arabian Desert

.

@ Copyright 2006

Camel Photo - Courtesy - Matt Rutherford.

Weekly Visit to Lincoln Hospital

Thank goodness, after a most difficult week, Hamada is feeling so much better today. His back pain nearly gone. We visited the Alex Day Ward at Lincoln Hospital for the regular weekly 'line-flushing' the wonderful nurses do a sterling job everyday, looking after and attending to many patients. They work with so much grace and understanding for each and every person. Always a smile and a greeting. Nurses, like Linda, Michael and Claire et al. - "Big thanks" to them, and "Heaps of Rainbows" to you all.

See also comment under this. Thank you all.

Al Byt - Al Kabeer - The Big House.

Al Byt - Al Kabeer

High above the steepest hill

stands this house of love,

a faded splendid home is here,

It's name 'Al Byt - Al Kabeer',

such pretty ornate railings as

you climb the steps inside,

start to show the love within

that definitely resides.

The grand 'high ceiling' entrance hall

with precious chandeliers above

and Mama'let waiting there

her sparkling eyes of love.

Her beautiful arms would take you

and hold you to her heart,

with jet black hair luxurious,

her face a smiling part.

She took us to the 'Summer Room'

as she called the girls for tea,

"bring the porcelain and glasses

my son is home to me"

the long eau de nil shutters

I remember in every room

protected turquoise silks and gold

ornate ceilings, in partial gloom,

and as I glanced around the 'salon'

at the beauty of this place,

I saw the sweetest look of love

upon his Mother's face.

Gilt carvings on the pretty chairs

the heavy 'Adam's' fireplace

the ticking of the many clocks

yes, twas another place.

So many rooms before us
all tall and elegant in their way,
he, brought me to this fine home
to spend our summer days,

And as we greeted one another
I looked from balcony views,
my husband tightly held one hand
his mother did so too.

I loved the fine Aubosson rugs
on each and every floor,
I loved the smell of cedar mixed
with mint, and life before,

and how I loved this golden life
the slowness of the days
this gentle kind enduring Mother
who showed another way.

The calmness of her movements
the joy at everyday,
would take me on a journey
to discover peaceful ways.





@ Copyright 2007.

By H H The XIV Dalai Lama

Found on a friends Web - Jewel (USA). I like this very much.

No matter what is going on
never give up

Develop the heart
too much energy in your country
is spent developing the mind
instead of the heart

Be compassionate
not just to your friends
but to everyone
be compassionate

Work for peace
in your heart and in the world
work for peace

Never give up
no matter what is going on
around you
never give up.

By H H XIV The Dalai Lama.

Wretched Pain.

We now have the pain under control again and have this morning talked with the support team at Lincoln Hospital. The good advice from the Haematology Nurse has been most helpful and Hamada feels much more comfortable now. This severe pain is to be expected at this stage of the Myeloma, but we must endeavour not to let the pain "take hold". I am now playing some of his favourite music, his smile is back, and it's a much better start to the day.

It Was A Love Affair

It was a love affair
you and I
It was delight not virtuous
It was visionary
It was a moving nature
It was strange it was pure
but it was, a love affair.

It was a love affair
you and I
It was quixotic, it was new
It was imaginative
It was romantic
It was sensual
but it was, a love affair.

It was a love affair
you and I
It was a passion
It was exciting
It was taking-up my life
It was everything
but it was a love affair ?


@ Copyright 2006

I Was Looking For You

I was looking for you
when hot days seared my mind
and starlit nights were often kind,
when all those handsome boys danced by,
I was looking for you.

When warm breezes brushed my cheeks
and I had studied for weeks and weeks,
when I could swim in warm blue seas
and honeysuckle were full of bees,
I was looking for you.

When I was walking along the shore
and knew that I could give no more,
when underneath my feet the shells
ground, and there my life was turned around,
I was looking for you.

On Autumn days which coloured red,
we laid together, in soft warm bed
when reaching through the sweet dusk light
I held you in my arms so tight.
I was looking for you.

I was looking for you when
crisp white snow did cover the ground
when my cheeks were pink
and yours still brown,
I was looking for you.

I was looking for you,
as I searched along the way
when you used that smile
that changed my life
that way,
I was looking for you.........

@ Copyright 2006

Up-Date

Hamada is not so good today - the pain in his back is really bad - he is taking Oramorph - and today unable to get out of bed unaided. I feel so sorry that this is so, especially after doing so well with the 'Harvesting' last week. Perhaps all the sitting around and the long car journey has taken it's toll. He will be resting and sleeping most of this - Father's Day - I will shower him with as much love as I can. The two poems above are special to us, but today is a good day for them. Thank you all for your good wishes, it is a comfort to know you are all thinking of us.

A Stem- Cell Lament. June 2007

We're always there and never late

again the day we sit and wait,

thrice again we must believe

stem cells elusive, are for thee,

the nurses come for blood to take

to send to lab, a longer pray.

The swinging doors the patients bring

but my dearest one, no longer sings.

I look at medi-wash machines

I try to peep at path-lab screens,

results for 'dear heart' just this time,

a higher count would do just fine.

Some patients grim, it's such a shame,

the counts not good it's home again.

It's not a lot dear lord you see,

to send the stem-cells straight to me

I'll keep them safe, right by my heart,

I'll hold them tight, then he won't part.

We need them here just for him

please, dear lord, to help him win.

I look at pictures on the wall

don't ask me what their called - at all,

the time ticks on, but slowly now

my heart in isolation, bows.

It breaks my heart to see his face

I hate to watch this turn of fate.

He's patient looking at the door

which opens now, but brings no more.

We wait and wait as doctors pass

please give the 'green light' so we can start.

We're tired now this fight is long

but we'll not stop, they could be wrong !

Send back those lab results to us

and make them good, a million plus......

A Thank You

A big "thank you" to Sir Richard Branson who added his comments to my poem 'You Elude me' at 2.53 am today.

Thank you Sir.

Further To The Post Below.

Further to the Post below - Have just heard (17.30) from the Haematology Dept, at Nottingham City Hospital. Hamada's collection today has yielded just 320,000 stem cells - which although is not very good - does now bring the total over the 2,000,000 mark - which is indeed good news. We now await the Professors remarks.

Another Try

We have been at Nottingham City Hospital since Sunday evening, Hamada has now managed to 'harvest' a further 500,000 Stem Cells on tuesday. We are not so hopeful for today's collection as the count was down again - as it was on monday. They will let us know later on today, when lab reports are back. It has again been so stressful - not the lovely nurses - they always do their best to make you comfortable - but the waiting is just terrible. We have spent a total of fourteen hours this time, in the clinic over the three days.. ( we would wait forever -if they would just come out !! ) At the moment Hamada has 1,800,000 not quite enough for the transplant.

An Evening At The Village Pub

Hamada is in pain again today but we are managing to get it under control. He really wants to join our house guests - Jen and Ian - at our village pub tonight, for some fun, laughter and a good meal with our friends. He says "you can carry me down, I'm coming". he has started the GCSF injections for monday, and has now had four. Still smiling and never-ever complaining, but you can tell by his eyes that it hurts !!!! despicable illness, I say.

Dreams of Montazah - in the 1950's

Dreams of Montazah.

He dreams of Montazah

the palace within his mind,

as he is quietly resting,

I know he goes back in time.

This splendid 'Salam-lek' palace

built high on hills above

this turquoise studded jewel,

secluded bay, entwined with doves.

Amid the palms, stands clearly
this monument of love,

built from finest 'red bricks',

a blessing from above.

Smooth and graceful standing proud,

with white 'najoods' and sea around,

he would walk in verdant grounds,

in peaceful harmony, no sound.

The quiet of these gardens

lush all, 370 fed-dans,

would take his heart in a myriad walk,

his bare feet, on fine white sand.

He dreams of 'Montazah', the palace,

always within his mind,

this paradise inn of time,

he enters gates that keep the crowds at bay,

which for him are opened, every single day.

And when he's tired of strolling,

I know just where he'll go

he'll leave gazelles and rock gardens

and the flowers, he loves so,

he'll step across the water

to the island of all time

where classical statues never alter,

in plethora, there to stand.

And here he'll fish or flirt !

or swim, in sunlit sheltered bays

and for a little while,

he remember all those days.

Montazah keeps him peaceful

I see that smile again, and when

he sleeps tomorrow,

he'll go right back again.

@ Copyright 2007 -Hamada used to walk in these Gardens as a child.

This Visit To Lincoln Hospital

Today we visited Lincoln Hospital again, for the pre-check for next weeks, hopeful third! 'harvesting'. Hamada's 'Hickman' line was flushed, full bloods taken and these results will be used if required at Nottingham Hospital. It was a quick trip, let's hope this is a precursor for next week. Hamada is feeling quite good today, not moving very well - but the infection is somewhat better- by Monday I do hope he will be ready. Hamada starts the third course of GCSF injections tomorrow, taking two per day - lets hope they do the trick this time.

A Summer Day

How beautiful this Summer day,

the colour of the flower,

I seemed to miss it all today

and often wished a shower,

to match my mood, I'd like today,

rain and thunder all the way.

The snow and hail, they could come,

and even lightning too,

If I could take your pain away,

A hurricane would do.

How beautiful this Summer day,

with not a cloud in sight,

and there you are

again in bed, putting up a fight.

The sun is blazing down the rays,

and when you turn and smile,

I'll keep you with me, and that gaze,

and never miss the flowers

and if you think I love you less,

I'll long for summer showers

How beautiful this Summer day,

the stillness of it all,

the sky is brilliant, almost red!

you smile at me, and rest your head.

So does it matter the flowers are out,

does it matter that their blue,

if I could take your pain away,

then this is what I'll do.

For then the rays, the lovely sun,

the flowers, each and everyone,

I'll keep you and that lovely gaze

then this will be my Summer day.

@ Copyright 2006

Lilies

Lilies.

Do you remember long ago

you found that magic place,

where lilies filled most every room

and beds were dressed in lace

the men in polished uniforms

took bags and opened doors,

and the crystal of the chandelier's

twinkled straight on marble floors

The majesty and splendour of

this, your special place,

was clear as sparkling water

that ran from fountain space.

You sat me by the sea-view

in a chair of plushest silk

the lady with the clear sweet voice

the harp, it's gentle lilt,

you said my hair was "pretty"

and my dress was "just divine"

and then they brought us pink delights

and goblets full of wine.

The scent from all the lilies

that filled most every room,

could that be what was turning

my heart, amid the blooms,

perhaps it was the dark red wine

perhaps it was your face,

perhaps those gilded bronzes,

I remembered in that place

We walked on Turkish carpets

in rooms of ormolu,

along the 'china' terrace

admiring stunning views,

we walked along the waters edge

leaving sandals on the stairs,

still that beguiling smell of lilies,

I wondered where, from here

and as you turned and smiled

coming, face to face......

where lilies filled most every room,

and beds were dressed in lace.

@ Copyright 2006

Emmanuel's Message for Grandpa.

Manu made this little paper boat for his Grandpa - It says Cancer - Boo and Hiss.

A Chest Infection - 3rd June 2007

Poor Hamada - back in bed for the whole of this weekend, with yet another cold and now a chest infection. His very much reduced, white blood cells, affect his ability to fight off any infections. So he always succumbs easily. With the continuing severe pain in his spine - it has at times, been difficult to make him comfortable - he has been sleeping most of the time so now I'm really hoping he will be well enough to start his further treatment later this week.

Still, some excellent news from NICE in the media today, about the drug Velcade - thank goodness for that - I believe this new system will help provide many more Multiple Myeloma Patients, who need this drug, to receive it. - See More in Q & A @ www.myeloma.org.uk

When You Lived By The Sea - In Alex.

When you lived by the Sea.

Down the steep road you went

round the corner, heaven sent.

The long 'corniche' and turquoise sea

'twas brilliant sun, when you took me.

With the crowds in summer haze

we joined the throng just to gaze,

little brown boys having fun

chasing in the hottest sun,

and then we stepped, as you took my hand,

along those brilliant, hot white sands.

~

The turkish man with tray on head,

brings the pastries, as you bid,

on kites that fly in cobalt sky,

and when we talked, you and I,

of the future that we planned,

'snooty' camels passed at hand,

when you lived by the sea.

~

Snacks from Mama's cabin there,

we sat in ' garland ribboned' chairs,

little pots of tasty treats,

houmus, tabullah, syrup sweets,

games of cards with sharper boys,

dark skinned men, selling toys,

children laughing, happy fun,

smelling sweetly of the sun.

Yatching club at half past three

always there in time for tea,

when you lived by the sea.

~

Down that steep road we went

round the corner heaven sent.

On the side 'Old Cecil' stood

crumbled then, but very good.

Gordon's Gin they found us there ,

and as we sat in rattan chairs,

breathing in that steamy air.

Silver trays with glasses bright,

we talked and talked into the night,

the punka fan whirled and swayed,

and in the night, I always stayed,

when you lived by the sea...

when you lived by the sea in Alex....

@ Copyright 2006

Photos courtesy : Matt Rutherford
All rights Reserved.

My Boys - Written July 2006

They came to wait,

to listen and to care.

They left their work,

their routines, their lattes,

and their lives,

but still they came.

Just one call,

a Mother's need,

brought my boys, fast to me.

Nothing seemed as strong that day,

as those two boys,

who came my way.

I leaned towards them,

and broke my heart.

They stood tall and strong,

to share a Mother's grief.

And they came.

They took the calls,

they took my arm,

they drove the cars,

they helped my heart.

They are my boys,

and they came....

@ Copyright 2006

The Precious Drugs

We collected the G.C.S.F Injections from Lincoln Hospital today - the precious injections that Hamada will start again next Thursday - they stay in the fridge until then -these will hopefully enable the 'harvesting' to take place shortly at Nottingham City Hospital. This is now the third try! He has been for a further check-up and 'flushing' of the 'Hickman' line today. One more visit next week and he is ready to go again. The pain in his back is severe but he feels he does not want more radiotherapy before the stem cell collection.

Love Songs -Written in June 2006

When he wakes to different days
I play the songs of sweet refrains.

The gentle strains to open eyes,
the sweetness of the days gone by.

The songs of love, the songs of hope,
as eyes and minds adjust to cope.

To waken restfully, to come alive
songs of days to pass the time.

Sweet refrains, and songs of love
just to help, and just to love.

When he wakes to different days
I play the songs of sweet refrains.





@ Copyright 2006

A Day Of Pain - 30 May 2007

Not a good day today, Hamada has severe pain in his back-I am hoping it is not another fracture - He manages to get up in the mornings with support and such determination, it is painful to watch. Still we have managed a slow walk around our little town, enjoying the sunshine and the fresh air and then a ride down our country lanes -seeing a newly born 'Lincoln Red' calf - on our return to the village - Hamada is exhausted but pleased.

Should I Pray Now.

Should I be praying
is the time now ?
will you be listening
if I pray now.

Have I got Angels ?
quickly come now,
should I be praying
I'm sure the time's now,
would you be listening
if I pray now.

Where is my Gabriel
from angels above,
will you be listening
to help and to love.

If I open the door,
If I open my eyes ,
have I got an Angel
right by my side.

Should I be praying
is the time now,
would you be listening ?
If I pray now......





@ Copyright 2006

Sung by Jo @ http://www.myspace.com/jomoursimusic

Photo : Courtesy of Matt Rutherford.

I Will Live In This Village.

I will live in this village
with cornflowers blue,
I will love in this village,

a love that is true.

I will glean from each day,

no minute to waste,
I will live in this village

to quieten my haste.

I will love the large skies

with their dark twinkling hues,

I will smell sacred earth

with a love that is true.

But all I ask, is a slowness of pace,

I am seeking dear lord

to not let it race,

for the time is now

to enjoy what we can.

I will walk in this village

along green tiny lanes

only no one will see

the heart that is pained.

The tiny church,

strong in it's place

holding all memories
I came face to face.

The sorrows of many

who went before,

who lived in this village

with love just the same.

And like my sorrows

they lived in this place

they loved in this village

with cornflowers blue,

they loved in this village

a love that was true........

@ Copyright 2006

Photos : Courtesy - Matt Rutherford.

Can You Please Get Well.

Grandpa please, can you get well
please remember take your pills,
listen what the doctors say,
you must get stronger every day.


I love you so, I love the way,
you chat to me all the day,
for you are kind, you teach me lots,
and when you're fine you laugh a lot.


We practise chess, and shoot at goal,
I wish you'd stay until you're old,
sometimes you kick, and then you fall,
never minding, not at all.


Grandpa please can you get well,
you must you see, to catch my ball.
Grandpa please take all your pills,
cause who will feed the fish you see,
if you're no longer here with me.


Your twinkling eyes that laugh with me,
the fun we have at Grandma's teas!
Grandpa please can you get well,
please remember all your pills...


@ Copyright 2007

If You Feel You Cannot Stay.

If You Feel You Cannot Stay.

Darkest sky of leaden light

crescent moon in ageless flight,

Paris on a rainy day,

and if you feel you cannot stay

deep within my heart you'll be,

and I will see it all for thee.

Pretty ladies passing by,

clouds of white that seem to fly.

Trees of green, in early bloom,

these will take away my gloom.

Look and see, for if you do

house on hill, and friends for you,

deep blue seas, the 'honeycomb' man,

and if you really have to leave,

then I will see it, just for thee.

The lovely child who's soon a man,

I will guide him, if I can.

The music of those lovely years,

will drift with angels to your ears.

And if you really need to leave

then I will hear it, just for thee.

When your body is tired from trying

when your heart is slow to beat,

I will take you on a journey,

when we danced in summer heat.

Windows wide with sultry air,

scented perfumes in my hair.

You will hold me in your arms

and I'll remember, all your charms.

We will twirl in tango sway,

and if you feel you cannot stay.

And if you really want to leave,

then I will see it all for thee.

I will see the memories past

and if I really keep them true,

then I can do it all for you.

But if you really need to leave,

Then I will do it all for thee .

@ Copyright 2006

.

Cairo.

Oh Cairo of the sepia light,
empurple in the late of night,
the sparkling rays on marble stones,
the quickest steps and gleaming domes.
The narrow streets and alley-ways,
the different smells the different ways.
The hookah pipes, the mint tea trays ,
Oh Cairo and your faded ways.



The empyrean of mosaic mosques,
the many souks and little shops.
The hot and dusty lives we lived,
the little child with flower to give.
Street cafe where every day
we sat and watched,
in wondrous gaze.
Oh Cairo, I remember all those days.



The perfume shop, where we paid
to smell like Chloe, in a way!
The special time, with special friends,
we thought that it would never end.
Halcyon days spent with you,
enticing splendour of garnet hue.
Twinkling stars in darkest night,
Oh Cairo of the sepia light.



The dark robed men,
with beads and dice,
delicious honey with special spice,
the bright and silky lengths of cloth
tahina, lentils in a pot.
Can you recall this magic place ?
for I can see your handsome face.
Oh Cairo of the sepia light.



@ Copyright 2006

Top Photo - Courtesy: Matt Rutherford,

Sing Heart And Come Alive.

Sing heart and come alive,
close your eyes and clear your mind.
You can recall those desert sands
and when I take you by the hand,
atop the golden dunes we'll stand,
in heaven, in those mountains high,
sing heart and come alive.

Sing heart and come alive,
the alleys of the old Oman
in bustling fruit filled market place,
I clearly see your lovely face.
The dhows along the river nile,
it's splendid majesty of pace,
sing heart and come alive.


Sing heart, and come alive,
close your eyes and clear your mind,
the hanging fragrant jasmin blooms,
will take away your heavy gloom.
The beauty of your mothers face
the slowness of our daily pace,
sing heart and come alive.


Sing heart and come alive,
the frankincense in pots of gold
the alleys and the boys so bold,
the galaxy of sweetest cakes,
the air so warm upon your face.
Close your eyes and clear your mind,
sing heart and come alive...

@ Copyright 2006

Another Try

Today we have news of yet another try at 'harvesting' the stem cells for my husbands stem-cell transplant. This will be the third attempt. He has manged to mobilise only 1,200,000 stem cells, which is only about 50% of the amount that is needed for him to proceed. We continue to believe there will be a way he can stay with for us longer - wish us luck.

If You Should Leave Me

If you should leave me,
where would you go.
To the arab courtyard,
where once you held my hand.
The fountains flowed,
the coolness of the shade.
If you should leave me,
where would you go.

If you should leave me,
where would you go.
To those corn fields,
with sapphire skies.
Where hand in hand,
we walked and cried.
If you should leave me,
where would you go.

If you should leave me,
where would you go.
To empty beaches
where once we sat
on fine white sand,
under palms so tall.
If you should leave me
where would you go.

If you should leave me,
where would you go.
To hot dry lands
in tiny street, or
market place,
with 'tawlah' game in hand.
If you should leave me,
where would you go.

If you should leave me,
where would you go.
To Paris or to Rome
will you remember,
friends or me.
and most of all your home.
If you should leave me,
where will you go.

If you should leave me......

@ Copyright 2006

The Fight Goes On.

A year ago today, my beloved husband Hamada was diagnosed with Multiple Myeloma *. He was told he would not survive longer than six months. Never accepting, we have been fighting for the whole year to push back the time he has with us. I have written these little poems to convey my feelings and to help me to understand why this has happen to this kind, gentle Egyptian man,who is still quite young. He never complains, perhaps if he did it would be easier to bear. Still we fight on with hope of a transplant- using his own stem-cells. He is becoming tired but still he smiles- that beautiful smile....

* Info: www.myeloma.org.uk

This Poem is sung on www.myspace.com/jomoursimusic

Lean Towards Me.

Lean towards me if you can,
For I am strong and tall.
I will hold you, not let you fall,
lean towards me.

You have a right like every tree,
to breathe and stand,
to fight when harsh winds blow.
You are that tree, and I am strong.
Lean towards me.

Hold your spirit strong,
like newly sown corn,
pushing through the difficult times,
for I will hold you, not let you fall.
Lean towards me.

You set your heart free
You let your spirit soar.
For you are brave, you are that corn,
And I am tall and I am strong.
Lean towards me.

Our fight is long
Like the river flows,
twists and turns with stones to cross,
but you are here, and life is now,
And I will hold you, I will not let you fall.

Lean towards me.....


Sung by Jo Moursi on http://www.myspace.com/jomoursimusic

@ Copyright 2006

You Elude Me .

Sleep how you elude me,
dreams furthest from my mind,
heart that cannot rest unknowing,
looking darkness, hard to find.

Dark thoughts that push all sleep away,
from pain that comes from daily strain.
Can I fulfill your every need,
Can I answer every plead.

Turning here,turning there,
wretched, tired with mind alive.
Settle, rest, no time to spare,
in sleeping, with all unclear.

Sleep how you elude me,
dreams furthest from my mind.

I walk the floor, the dark of night,
black the sky, with heart that fights,
quiet should produce a rest,
but sleep, how you elude me best.

Darks my lover, where are you?
Sleeps my Angel, far from me,
heart that cannot rest unknowing,
where's your wings to cover me.

Oh! beloved sleep, how you elude me best....

@ Copyright 2006