A Power Within

As friendships and knowledge builds with other Myeloma sufferers, it is easy to understand that this Cancer unfolds so differently for each patient. With a huge variation in symptoms, it appears such a diverse disease that seems to stumble on the weakest organs making it’s own unique way of attack. For some MM sufferers the damage unfolds with lower back trouble or in long limb fractures or breaks. I know that  a neck fracture was the first sign for a friend that something terrible was wrong and then much  later  a diagnosis of MM was made. How differently this disease shows it’s signs in each patient.

For Hamada it was kidney failure that came out of the blue with no signal at all that anything was amiss, just an unusual feeling of tiredness. For sure it is so important to get an early diagnosis before the myeloma does serious damage to vital organs but how many of us get regular blood CBC’s? very few I would imagine in the UK. Unless like Hamada who did contract work at times and needed good health checks for insurance travelling abroad etc. In many cases this disease could and does go unnoticed for many months,  so the damage is already done. Although Hamada succumbed to MM he was in one way, very lucky to have had an early diagnosis as we believe that having had a blood test only six months before the very one that picked-up his kidney failure,  certainly played a great part in getting him to this now, three years six months point. Early diagnosis I believe, is paramount and vital, we all know that the damage done by Myeloma cannot be reversed but it can be brought under control. Still with good care it is important to stress, many patients are now living long and productive lives.

Hamada was immediately prescribed a vast array of maintenance drugs from day one. Including some to protect as much as possible, his bones and the lining of his stomach and gut etc. It is so important to keep regularly to the times of taking these drugs and injections, not missing out or delaying in the filling of prescription etc. Good continuous management of drug awareness, taking as much care with infections, avoiding places and people with colds or worse still  flu.

Diet is vital to the success of a longer life. Good tasty meals that contain a good variety, covering all vitamins and minerals and for some little and often is the rule. In the case of Kidney damage, eliminating salt and potassium and increasing liquid intake to a reasonable two litre per day amount, has helped Hamada greatly. I know that there are many MM sufferers who still enjoy a glass of wine, and why not? But if the kidneys are affected not really a wise move, the rule always being, water is best. Hamada now has 15% kidney function when at diagnosis he had only 6%. A great improvement that has kept him from dialysis.

The very difficult part is that Hamada’s Para Protein-an important marker and indicator in the activity of the cancer- is rising once again, and the decision will have to be made shortly, with regards to the next chemotherapy regime for him, possibly Velcade. Whether he is really strong enough to try again with more chemotherapy and if this is the right drug of choice at a time, when he is enjoying a quiet but steady pace of life, is a most difficult decision to arrive at. The damage from this drug would certainly be detrimental to parts of his poor quality blood, which although not getting much worse, is not improving either but could bring down the para-protein  and such, help to eliminate further damage to his bones and organs.

We think the New Year 2010 will bring the answers to these decisions, Hamada has achieved so much and done so well we feel, for someone given a prognosis of only six months at outset . He continues bravely and without complaint about anything, a great lesson to us all I feel. So steadfastly we make the most of each and every day with love and the best possible care we can manage. We sincerely wish all our friends in the world of Myeloma (sadly there are many) peace and hope, a decent quality of life and the very best care possible from your providers but most of all, love and kindness from your carers .

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

I have taken my beautiful  “Borgo degli Ulivil”  sparkling grey dancing shoes, from their satin lined box, my soft grey “YSL“ velvet evening purse from it’s silken drawstring pouch. I have fixed my long tresses, in a more elaborate style. Drenched myself in Coco Chanel and slipped into my twinkling jet encrusted long “Dior” gown. I have brought all my diamonds from the safe for this is indeed, a special occasion!

So here I am, the journey was uneventful, my elderly Rolls purred along the English countryside to our dear little airfield.  The flight across the pond was smooth, fast and over in what seemed like a mere moment or two, my pilot for the evening trip is my dear friend Richard Branson.

I am at the “Willow Manor Ball” waiting now for charming Al Pacino  to lead me to the dance floor for the first tango, and then whoever is able to dance with style and passion would be most welcome. Perhaps that charming Skip Simpson, I think he is taken with that pretty Cameron something or other. Or could it be my old friend Omar, he is a tad tired these days but still likes to dance and such a one for the scintillating conversation that I love, when of course he can bear to leave the poker table. We have had some wonderful games of backgammon over the years in his charming apartment overlooking the Nile near Cairo

How wonderful that I am attending the  Cyber ball at “Willow Manor”  Such fun we are all having, with wonderful  Beluga Caviar on the daintiest of Blinis with just a glass or two of Vintage,  Dom Perignon bubbles.

The orchestra is playing all the old dance numbers from many shows I can recall, my feet are yearning to dance, could that be Mr Astaire over there?  I am thrilled my dance card is full to the brim!   How simply wonderful the hostess looks and all these terribly handsome  men over there, surrounding Marilyn Monroe. What a party this is turning out to be,  here at “Willow Manor”

The Manor I must say looks amazing, with  much crystal reflecting their acting prisms of lights on the  most beautiful  rich brown mahogany floors. The flunkies are everywhere with trays of the most delicious canapés. The smell of  the huge vases of Lilies and Red Roses are overpowering – so reminding me of my poem “Lilies”  – and that truly wonderful place years ago… but I digress, no more of that.

I am here to enjoy this evening to the full and I have noticed some  admiring glances from several of the more mature men! I think I recognizes dear Paul Newman and is that not the charming young cove Johnny Depp? and can I see our dear old Richard Burton chatting away to Dame Helen Mirren, yes I’m right, just behind that marble pillar next to Eric Clapton and his friend, the handsome dark haired man from Santana.  I believe they are playing later tonight. I shall look forward to that.

What a splendid array of guests, pulling dreams and memories from my mind, how charming they all are. We might have a salsa or two later, there are some very swarthy slim young men here. I heard  a very beautiful redhead mention that  the wicked Lord Byron is also at Willow Manor tonight!  I will work my way around the room later and enquire after his health.

I can see  John Lennon in deep conversation with dear Luther, ahh now will he be singing I wonder?  then my evening will be complete. Umm, those lush deep tones of blues and soul, I can hear a sax playing in the ball room “ Heaven I’m in heaven” da da da la la la la… de  da da  dee…” when I’m out together dancing cheek to cheek.”

We shall be going into dinner soon, I am almost overwhelmed, as our superb hostess has informed me,  I am to be sitting between dear Tony Bennett and Robert Redford and opposite the young and very handsome Elvis Presley, whom I understand is to be singing later. Oh what fun we are all having !!!. 

The evening is young, alas I am not, but still…it is a delight,  full of dreams for everyone who attended the  enchanting “Manor Ball” A flight of the imagination perhaps…..?

This beautiful grey rose in velvet box has just been presented to me from an admirer

Thank you J. Johnson how kind you are  and

thank you to the charming and beautiful hostess Willow, at YES!  the “ Ball Of  The Year”  see:

http://www.willowmanor.blogspot.com

Update from Willow Manor 14.10.2009

“Some of the highlights of the evening, besides all the exciting celebs,was the strange Drambuie brew that TFE brought along, completely rendering us insane with one little sip, the SnL One jet ride from Skip and the Silver Fox, a fabulous dune buggy show on the front lawn from Thomas Crown, and Reya reading from her crystal ball in the manor library.

This fun event would have been nothing without all the wonderful imaginations and efforts of all of you dear, dear bloggy friends. Thank you from the bottom of my heart. It truly was an enchanted evening”

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

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.

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

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 top rather special  Sunset  Photo to us both.*     

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

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…

@Copyright Susie Hemingway 2009

Photo at “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 Photos. 2009

*This Poem was Posted On The Day Patrick Swazey Died Of Pancreatic Cancer. He 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 and to all lovers of dancing . “May Patrick continue to dance in Heaven”

 
“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 this 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@ 2009.
Photo courtesy of Matt Rutherford.

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

Found this quote on  a great blog – I like it a lot.

Ink runs from the corners of my mouth.
There is no happiness like mine.
I have been eating poetry.”
Mark Strand.

We decided as we had a full house at “Hemingway” for the Bank Holiday Weekend to visit a lovely beach close to our home here in the East Midlands. The weather was fair with plenty  of warm sun and a brisk breeze  that helped the colourful Kites reach their blustery heights. There were ten of us in all, so plenty of willing hands to push Hamada’s chair along the old fashioned promenade to reach our base for the day at one of the brightly coloured chalets  perched high with their watchful eyes, newly painted wood and so many memories of  families gone before. They made a stunning border along the seafront.

Hamada was thrilled with being by the sea again, such a favourite place and reminding him immediately of  his childhood growing up close to the Sea in Alexandria, Egypt, where as children they also had a beach hut. A smile seldom left his face all day. He watch intently at all about him, enjoying his family and the fun and laughter we all had. Savouring the good fish and chip lunch, nothing quite so enjoyable as eating this English delight, washed down with a nice glass of Bollinger’s. Much flying of kites , Matt, Jo and Stuart steering their garish coloured Kites high for us to see clearly at our good advantage point and our little Grandson even braving the cold North Sea!

A loving  family like many others, tucking into ice-cream, happy to be together and enjoying the banter and fun of a typical English Summer Day. Just as Hamada said “ A very comforting Day”

10561 view @ September 1 2009.

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

I’ve never made a fancy cake
a malt loaf is really me
I can make a lovely cuppa
so I can always have Assam tea,
I can rustle-up a chicken pie
with the shortest crust you’ll ever find
with a tasty bit of gravy too
but I never make tiramisu,
or even glorious meringues that rise
in heavenly peaks that reach the skies!
I’d rather have a drop of gin
and write a little ditty,
I’m getting on a bit you see
but I really don’t need your pity.
I truly like to dance and sing
with music playing in my ears
a duster in my hand,
like I was seventeen again
as I listen to rock-bands!

I like the music blaring out
put on my heels and gad about,
It gets the work done double quick,
then a drop of Gordon’s does the trick.
Pies,Poetry and a pint of Gin
my life’s complete, I dream within
of Para-gliding in sunny climes
but to be quite honest I haven’t time.
I’m busy selecting the brightest hues
of brand new hair colours,
and when I stand in queues
I love to listen to the latest chat,
of pretty girls who admire my hats!
I love to spray the testers too,
such fun to smell like a famous star
with Chanel and Gucci, I’ll go real far…

Never mind the ‘leccy bill, would
love new lipstick, better than pills!
Ah! this ones, the one for me
scarlet red, smooth as can be
will make me feel like twenty three,
Pies, Poetry and a Pint of Gin
to dance down street, new life within.
I spend the days reviewing years
I like to write and think a lot
not much one ,for knitting socks
nor for mowing or removing weeds,
I think I’ll  move overseas!
and sit all day with skirt to knees                                                                                                                                                                                                                                             in deck-chair on sand and feet in sea
with wrinkled face and cigar for me.
I can dance all night in Latin clubs
with swarthy handsome younger coves,
then come home at dawn for a cup of tea,
perhaps… I can learn to water ski?

but really I think I’d rather have…
Pies, Poetry and a Pint of Gin !

Copyright @ Susie Hemingway 2009

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.

Excerpt from United Press London:
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.

You may read “Life Is Fragile- Love Is Not” here.

All Rights Reserved @ May 2009