Select Page

“Welcome to my home on the internet!”

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.

Praise Indeed!

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

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.

Geds Antique Wedding group 1911 grass injuly 20.
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 boys 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 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…

 

All rights reserved with no reproduction of Photo.
Copyright @ August 2009.

 

With special thanks to Ged Tucker for the 1911 Family Photo
and also to Janey  Johnson for the restoration of this wonderful Photo.

“If I Could Dream You Well Again”

 

 

In dreams I make you well again
in the velvet 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
* El Salem – Favourite Hotel 

 

@ Copyright 2007

"A Special Day"

Wedding anniversaries are always special. Perhaps even more these days with marriages ending in divorce with what seems like a lack of commitment on behalf of many couples. We give up so easily when things don’t  ‘go to plan’  falling out of love at a whim! So celebrating another year together is always something to cherish, certainly something to be proud of.  The stress of modern day living can throw-up distractions that can lure us away from what is truly important. For many of us, we say our wedding vows in the  throe’s of love and passion to the person standing with us on that special day. Do we really think enough about or believe that  these vows, you remember? ” In Sickness and Health,  For Richer for Poorer, Till Death do us Part”  could be and often are,  severely put to the test in later years. Staying the distance is what is important when things go wrong. I would never think a marriage without kindness ever worth saving,  but supporting and caring  for your loved one and loving, even when due to illness things fall apart and are no longer the same, or – ever likely to be the same again – IS

Now that makes you proud, that is something worth celebrating!  I am so lucky, to have been able to celebrate another special year with my Husband Hamada, although life is not quite the same …it is still very special.  We have managed another year of married life together, when we thought on several occasions that because of  his Multiple Myeloma  www.myeloma.org.uk  he would not be here and there would be No more celebrations of  this, “A Very Special Day”

Wedding Anniversary - Hamada & Susie July 2009 003

Lora Conrad 17 July 2009. Everyone should have the privilege of reading Susie’s poetry. They bring real life to the forefront. It’s not always what we wish for, but, facing life’s valleys and sharing them openly makes it easier for others to accept also.

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.

"I Wish I Could Untangle You" by Susie Hemingway.

Susie Hamada - Lincoln 2006 
 
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 that lovers 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 the 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

 

First written 2007   :but the sentiment is just the same.
“I wish…”

Categories