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.
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
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)
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
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
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.
“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.
"It Was A Comforting Day" has now been selected by United Press for a new book of Poetry called "Spring Vision" to be published shortly.
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
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.
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.
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
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
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.
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.
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...
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 )
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.
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.
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 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.
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...
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 ~
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.
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.
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
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.
The music, distant, dusty but ours from years ago...
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
Photo: Easter Sunday Last Year ! - 2008. 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'
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.
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 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
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.
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 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...
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
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.
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
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.
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
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.
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 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
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.
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.
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.
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