Not So Good Readings For Hamada !

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

lgG Kappa

Greetings

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

In Christmas Lights by Susie Hemingway

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


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


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



All Rights Reserved: 2008

On Reflection.

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

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

And The Heavens Smiled - A Prayer -by Susie Hemingway

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

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

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

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

@ Copyright October 2008

"Sunset at Kanyemba" Courtesy of Ellie Robson.

"Sunrise at Hemingby" Courtesy of Janey Johnson.

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

All Rights Reserved @ 2008

You Are - by Susie Hemingway

You are the sun when shades are pulled

You are the sparkling water that rushes

over shiny rocks in torrent stream,

You are the smoky moonlit shadows on quiet walls

You are the sweet smelling cotton of summer days,

Yours is the smile, adorned in radiant highlights

on a tired face,

Yours are the dark 'bitter chocolate' eyes

that twinkle indiscreetly !

Yours is the contented sigh that embellishes my room,

You are the blackberries that hang in myriad burgundy

array against my garden wall,

You are the saxophone in bluesy midnight tones

that stirs my heart,

You are the will and courage of every day

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

All Rights Reserved 2008

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

365 Days Post Transplant !

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

A Partners Guilt

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



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

Extract from "Seasons Pass" - by Susie Hemingway

As pears that do not ripen

affirmation takes it's place,

when Autumn leaves turn to gold

my mind trenchant and keen;

I conquer many fearsome things

subdue and overcome, and as the mists

arrive, how precious days become...

Written in January and shown below.

All Rights Reserved @ 2008

Photo: Susie Hemingway@Flickr

Hamada's lastest CBC

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

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

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

On The Edge Of A Cliff - A Carers Perspective

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

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

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

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

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

"How Still - Remission" by Susie Hemingway

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

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

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

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

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

All Rights Reserved August 2008

Neutropenia - an explanation

I have been asked to explain what Neutropenia is.

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

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

Hamada Up-Date

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

A Helping Hand

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

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

:Poem Sea Dreams shown below.

Sea Dreams - by Susie Hemingway

Sea Dreams.

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

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

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

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

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

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


All Rights Reserved July 2008

Is There Ever A Right Time ?

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


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

Eleanor Roosevelt 1884 - 1962

I Will Not Be Broken by Jerry White.

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

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

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

My Clock - By Susie Hemingway

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


All Rights Reserved - June 2008

A Good Day.

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

Hamada Makes The Evening Party.

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

A Great Weekend And A Confusing Phone Call !

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

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

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

Lovely Weather .

Hamada enjoying the sun.

Pain and Marchpane - by Susie Hemingway

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

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

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

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

but YOUR eyes can see my soul...


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

Interesting - Perhaps?

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

Family Visits

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

Something To Soothe.

Hamada enjoying the Sun this week.

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

** The Beast is Back ! **

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

Two Years ~ Anniversary of Diagnosis by Susie Hemingway.

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

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

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


@ Copyright 2008

Photo Courtesy of Matt Rutherford

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

Update

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

Going For The Cure

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

Rescuing Providence

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

Just a Little Update

Hamada's still smiling but,

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

Secrets Of The Soul - by Susie Hemingway

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

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

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


@ Copyright 2008

What a great Site !

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

The Fight Goes On

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

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

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

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

~

How wonderful - some good news for us.

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

A Great Website.

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

Update on Good Friday

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

Further Update

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

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

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

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

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

~

Update

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

Update

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

Update.

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

Hamada Update

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

Update - Tuesday 26 2008

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

We Dance Again ~ February 2008 - Susie Hemingway

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


@ Copyright 2008


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

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

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

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

Dougie Maclean.

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

Hamada and Susie enjoying the wonderful Village Sunday Roast

Hamada Update.

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

POEMS .

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

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

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

Luv Pip

Seasons Pass - January 2008 - by Susie Hemingway

So seasons pass all eight of them!

from calm to gusty days,

from shock and realisation, to

shock and back again,

you can't stop the rain from falling

but you can catch it in your hands

and, in so doing -

you cup life within your palms.

In soft and gentle days of Spring

to gather forth a plan,

you breathe again and understand

in veiled obscured, shifting sands,

the changes, as in flowers grow

unfold in prudent ways,

but life will never be entirely, quite

the same again.

So Summer came as some did say?

but we preclude most all these days.

In fear and sacred keeping

to grasp and hold at bay

but sabre swords do block our way,

with dragons at our door,

and Summer passes like poppies fade

amidst golden sunlit fields.

As pears that do not ripen

affirmation takes it's place,

when Autumn turns to gold

my mind trenchant and keen;

I conquer many fearsome things

subdue and overcome, and as the mists

arrive, how precious days become...

So Seasons pass, all eight of them

and two years fly as seconds do,

the snow lies on the ground -

as hearts can only do,

and as I stand before thee

in Grateful Gratitude, to

glean and gain as red berries do,

to start the Year anew...

@ Copyright 2008

Dreams and Reality January 2008 - by Susie Hemingway

Dreams and Reality.

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

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

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


*A beach on the outskirts of Alexandria Egypt.

@ Copyright 2008

What a Lovely Comment !!

This extract taken from Hemingby Village News Letter.

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

Bob Parish ( Chair )

Update.

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

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

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

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