My Clock - By Susie Hemingway

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


All Rights Reserved - June 2008

A Good Day.

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

Hamada Makes The Evening Party.

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

A Great Weekend And A Confusing Phone Call !

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

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

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

Lovely Weather .

Hamada enjoying the sun.

Pain and Marchpane - by Susie Hemingway

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

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

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

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

but YOUR eyes can see my soul...


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

Interesting - Perhaps?

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

Family Visits

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

Something To Soothe.

Hamada enjoying the Sun this week.

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

** The Beast is Back ! **

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

Two Years ~ Anniversary of Diagnosis by Susie Hemingway.

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

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

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


@ Copyright 2008

Photo Courtesy of Matt Rutherford

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

Update

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

Going For The Cure

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

Rescuing Providence

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

Just a Little Update

Hamada's still smiling but,

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

Secrets Of The Soul - by Susie Hemingway

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

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

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


@ Copyright 2008

What a great Site !

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

The Fight Goes On

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

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

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

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

~

How wonderful - some good news for us.

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

A Great Website.

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

Update on Good Friday

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

Further Update

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

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

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

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

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

~

Update

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

Update

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

Update.

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

Hamada Update

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

Update - Tuesday 26 2008

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

We Dance Again ~ February 2008 - Susie Hemingway

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


@ Copyright 2008


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

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

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

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

Dougie Maclean.

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

Hamada and Susie enjoying the wonderful Village Sunday Roast

Hamada Update.

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

POEMS .

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

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

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

Luv Pip

Seasons Pass - January 2008 - by Susie Hemingway

So seasons pass all eight of them!

from calm to gusty days,

from shock and realisation, to

shock and back again,

you can't stop the rain from falling

but you can catch it in your hands

and, in so doing -

you cup life within your palms.

In soft and gentle days of Spring

to gather forth a plan,

you breathe again and understand

in veiled obscured, shifting sands,

the changes, as in flowers grow

unfold in prudent ways,

but life will never be entirely, quite

the same again.

So Summer came as some did say?

but we preclude most all these days.

In fear and sacred keeping

to grasp and hold at bay

but sabre swords do block our way,

with dragons at our door,

and Summer passes like poppies fade

amidst golden sunlit fields.

As pears that do not ripen

affirmation takes it's place,

when Autumn turns to gold

my mind trenchant and keen;

I conquer many fearsome things

subdue and overcome, and as the mists

arrive, how precious days become...

So Seasons pass, all eight of them

and two years fly as seconds do,

the snow lies on the ground -

as hearts can only do,

and as I stand before thee

in Grateful Gratitude, to

glean and gain as red berries do,

to start the Year anew...

@ Copyright 2008

Dreams and Reality January 2008 - by Susie Hemingway

Dreams and Reality.

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

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

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


*A beach on the outskirts of Alexandria Egypt.

@ Copyright 2008

What a Lovely Comment !!

This extract taken from Hemingby Village News Letter.

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

Bob Parish ( Chair )

Update.

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

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

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

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

Latest Update

Happy Christmas to Everyone.

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

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

Then and Now - by Susie Hemingway

Dare I dream of Christmas time

of Robins and of Christmas songs,

or maybe yes? of spring beyond

when I see that journey made

with courage and no other way,

I dare to dream, of walks we'll make

or sitting by that sparkling lake.

Do I think of then and now

can I dream, then just how?

I start to hope that back you'll come,

from heavy heart as joy becomes,

to fill my life again with hope

as slowly as a bud unfolds,

you're stronger now, oh! the hope.

with every day I look at you

to see your heart returning too,

to just believe we have the time

as such happiness unwinds, to form

and shape like seasons do,

the time together, just us two,

dare I dream of Spring beyond?

So hard the journey you have made!

just to see another day,

just to spend the days with me

in quiet 'turquoise' harmony,

dare I dream of then and now

of Robins and of Christmas songs

or maybe yes? of Spring beyond....

All rights reserved.

Update.

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

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

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

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

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

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

It is not love - if you must ask.


dedicated to my youngest son Yousef - October 30


@ Copyright 2007

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

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

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

Update at 3 November 2007

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

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

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

Update

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

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

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

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

Update.

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

THE BEST NEWS - UPDATE.

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

A Teardrop From Your Eye - by Susie Hemingway

I saw the teardrop from your eye

you turned your head, a little sigh,

you feel your pain, but seldom say

"yes it's been a difficult day"

the courage of this daily battle,

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

never letting in the sadness that

begins at dawn and ends at sleep.

I saw the teardrop from your eye

it made me angry, it made me cry.

The changes you accept so well

must be for you, a living hell,

to not be steady on your legs

to feel so sick, you need your bed.

You sit and drink the world right in

in quiet ways, you always sing,

you smile as if a secret brings

a gift of happiness within.

I saw that teardrop from your eye

it made me angry, it made me cry.

Your quiet ways and inner peace

accepting all, not giving way

just hoping for another day.

To sit and be, in joyous calm

not asking for a magic charm,

if it were me, I'd scream and shout

your so determined, there's no doubt

such dignity, such pride, but

I saw that teardrop from your eye

it made me angry, it made me cry.

When all about you rush and bother

you sit and watch and quietly be

your love for me so clear to see,

never once do you complain

I see your passion, it never wanes,

you watch and wait, but never say

"this has not been, the best of days"

your daily thanks and generous praise,

they always take my breath away.

I saw that teardrop from your eye

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

@ Copyright 2007

Update 16th

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

Update - 14 October 2007.

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

Update. - A Stem Cell Transplant - 10 October 2007

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

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

Thank You All.

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

The Spiders Web - by Susie Hemingway

As the spiders web draws you in

your eyes flicker becoming dim

I reach in terror to ease your pain,

but however I work, there is no gain.

the mist around your tired face

draws you gently to that place.

don't enter the web that pulls you close,

stop spinning spider, leave your prey.

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


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


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


So easy is that gossamer thread...






All Rights Reserved
@ Copyright 2007

Great News At Last!

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

If I Could Dream You Well Again - by Susie Hemingway

In dreams I make you well again

in the quiet of the night

you run with me, in endless flight,

far away in thoughts of long ago

we run on beaches sailing to

deserted islands, strong were the arms

that pulled the boat ashore.,

In dreams I see you there once more.

In dreams I make you well again

your long limbs brown and strong,

the warm breezes puff at our skin

we swim in blue waters

you touching my nose and cheeks,

the droplets of crystal waters

dry with salty streaks,

In dreams the picture never alters,

In dreams I see you there once more.

In dreams I make you well again

to walk the sands with me

you standing tall, with eyes so clear

from El Salam* unto the sea,

to see the lighthouse in the bay

for you to breathe that salty air

for you to brush my long fair hair

In dreams I see you there once more.

In dreams I make you well again

in the quiet velvet of the night

the smile that changed my life

from dusk until the light,

in dreams you dance with me

on islands in deep blue seas,

close your eyes and dream with me

see those 'najoods' that stand like waves

see those golden seas of sand

see the place you held my hand.

*najoods - Sand dunes.

*favourite hotel

@ Copyright 2007

Do You Remember Paris.

Do you remember Paris

so many days ago,

we ran in the rain

me in the highest heels, and

you never letting go,

dodging busy bustling streets,

past the Galerie of Fine Arts

wishing we could buy the shop,

do you remember Paris.

The tiny hotel you'd chosen

with a lift for only one

we squeezed tightly together

leaving our baggage still to come,

we laughed, as we rose to the attic

wiping the rain away,

and in our little shuttered room

we hid ourselves away,

do you remember Paris.

You sent for rolls and coffee

from the cafe just below

and as the lights came on

the room took on a rosy glow,

you say the smell of coffee

takes you back to that little room,

that, high over-stuffed bed,

the faded flowers, in candle gloom,

do you remember Paris.

We mixed the 'Coco' and 'Givenchy'

the hearts so full of love

the heady cognac, just to warm us,

the courtyard full of doves,

it was our Paris, not the Eiffel

or the Champs-Elys'ees

or even the Louvre

just in the latin quarter, a tiny

hotel for two.

Do you remember Paris ? ...

@ Copyright 2007

A Little More News

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

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

More Chemotherapy

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

A Good Improvement

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

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

Home Again

Hamada and Ian

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

I Wish I Could Untangle You - July 2007

See twinkling eyes that dull with pain

eyes once bright as fire flames

we juggle pills to make it wane

with every day I cry for you

moving now is hard to do

limbs get stuck refusing to

unbend, and move as graceful should,

I wish I could untangle you

dreams that see you run again

walk the miles that never end

play the games we used to do

dance forever, just us two

this once strong man

who laughs with me

now has morphine in his tea

instead of 'bubbles' in a glass

thinking of sweet days gone past,

still we can dance, if very slow

so legs don't stumble, I'll

not let you go, put on

the music, hold me tight

and yes, it still feels very right

we'll play the soft and gentle songs

the ones you love, we'll float along,

I'll watch your singing eyes

and wish I could, until I die,

I wish I could untangle you

I wish.... I could untangle you

@ Copyright 2007

Back To Hospital !

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

Lincoln Hospital

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

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


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

And The Music Played.....

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

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

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

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

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

@Copyright 2007

The Daily Task !

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

Such is the Pain Of Love

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

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

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

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

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

this is the pain of love...


@ Copyright 2007

Today from Jewel, Long Beach California US

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

We thank you all.

Yesterday More Bad News,

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

Not The Best Of Days.

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

Stay and Sleep

I can hear him sleeping

I can hear the storm

it's fierce ebony clouds

scudding, it's yellow flashes

spend themselves against

my window pane.

Trees crashed, branches fell,

and my heart no longer knew it's way.

Still he slept, his

gentle breathing at odds with the

violence, that shook my soul,

Can you hear the storm ?

is it inside your realm

is it beyond your pain

is it beyond mine.

The sky lit and intruded

into my domain,

It's clear shadows against my walls,

a dark mark against my heart.

Wake and listen

do not enter that sphere

no, stay and sleep

quieten my province.

Stay and sleep...

@ Copyright 2007

A Dedication To Our Friends

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

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

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

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

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

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

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

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

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

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

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

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

* Jebel Hafeet Mountain range.

* Rub El Khali Arabian Desert

.

@ Copyright 2006

Camel Photo - Courtesy - Matt Rutherford.

Weekly Visit to Lincoln Hospital

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

See also comment under this. Thank you all.

Al Byt - Al Kabeer - The Big House.

Al Byt - Al Kabeer

High above the steepest hill

stands this house of love,

a faded splendid home is here,

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

such pretty ornate railings as

you climb the steps inside,

start to show the love within

that definitely resides.

The grand 'high ceiling' entrance hall

with precious chandeliers above

and Mama'let waiting there

her sparkling eyes of love.

Her beautiful arms would take you

and hold you to her heart,

with jet black hair luxurious,

her face a smiling part.

She took us to the 'Summer Room'

as she called the girls for tea,

"bring the porcelain and glasses

my son is home to me"

the long eau de nil shutters

I remember in every room

protected turquoise silks and gold

ornate ceilings, in partial gloom,

and as I glanced around the 'salon'

at the beauty of this place,

I saw the sweetest look of love

upon his Mother's face.

Gilt carvings on the pretty chairs

the heavy 'Adam's' fireplace

the ticking of the many clocks

yes, twas another place.

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

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

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

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

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





@ Copyright 2007.