Category — My Family

The Journey

Hamada starts chemotherapy once more, this time with the drug Velcade combined with Dexamethasone.
Velcade is a newer type of chemotherapy – at least here in the UK – an anti-cancer drug called a proteosome inhibitor. In the UK it is allowed on the NHS to people who have already been treated with at least one other type of chemotherapy (Hamada has received several types from 2006 until a Stem Cell Transplant in October 2007)
Velcade is allowed on the NHS for first relapse after a Stem Cell Transplant or in persons unsuitable for SCT. 
Tomorrow  Hamada will receive Velcade by infusion combined with 40 mg Dex(over two days), this will be continued twice weekly for two weeks then 10 days rest and then repeated. He must reduce within four cycles or it will be withdrawn due to the enormous cost of the drug. Some people sail through the possible side effects some of which are very serious and so Velcade is not to be undertaken lightly especially when like Hamada whose blood is very damaged from previous treatments and his kidneys are compromised, it will be an extremely tough road to travel.
It is most levelling to watch as the disclaimer is signed, listing all possible side effects some of which, are most frightening but is there really a choice? Hamada is quite aware that while the Para protein (M-Spike) rises in such an alarming manner ,now at 18.6! something must be tried before even more damage is done to his bones and vital organs.
Multiple Myeloma is not for the faint hearted. It was never a choice but we stand firm and are ready together to once again fight this battle and we thank the patient doctor on Thursday, for painstakingly answering my long list of questions and helping us to arrive at this decision and to those he consulted regarding Hamada particular case.
We also thank our dear family, friends and fellow bloggers for all the wonderful support given, as Hamada continues his fight and journey with MM.

Breathe…

The above sketch was drawn by our Grandson Manu 9 years of age and shows clearly how well he looks closely at his Grandpa’s face. On the back was a little message and I am sure he won’t mind if I share it with you.

To Grandpa, I love you and I hope you see this every day and think of me. Remember to take all your pills and you’ll be OK!                  Buckets of  love, Manu XXXXX

How simple, uplifting and complete this little message is. Manu declares his love for his Grandpa, then states a fact or two, gives good advice,  and no more is needed. There is much love and thought  through the eyes of  this child. I wish life was as simple as this little note.

Note given: 31st January 2010

For those who understand  Multiple Myeloma  and are following  Hamada’s clinical details the M-Spike(PP) is now a whopping 18.1 !! the higher this reading goes the more damage will be done to Hamada’s bones and vital organs which is the nature of this disease.

Hamada is to have another bone marrow aspiration (5th one in all) and a  further X-Ray on his back and pelvis next Monday  then on the 15th February the consultant will discuss at a  meeting with other Haematology Doctors and Prof Russell from the  Clinical Haematology Centre at Nottingham, with the view to Hamada starting Velcade which is a newer  chemotherapy drug and one Hamada has not tried before and is allowed here on the NHS for first relapse. This is not an easy decision to arrive at and must be weighed carefully against Hamada’s poor blood counts and his quality of  life now but as MM rears it’s ugly head once more,  the feeling is we must wage war with further Chemotherapy.

Having been ask again by some of my readers “How do you manage to keep cheerful” I have again posted  a small piece I wrote about my feelings  on the 11th September 2008. Nothing has changed much during this time, yes  of course  I have very sad times and it is not always easy to find  strength when tired to help with mobility needed to care, but you do, and my feelings during this time remain the same.

11 September, 2008

On The Edge Of  The 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 know how different it is for all Carers, of the problems that affect us all and that 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, holiday time and plenty of walking together. Would all these have to change?  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 managed 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, even when it hurts, 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.

All Rights Reserved @ 2008

The Power Within can be purchased from:

http://www.susiehemingway.com/books/

Wishing all that visit my blog "A Very Happy And Peaceful New Year" It is tough for me to say goodbye to 2009, as it has been more comfortable than the past two years for Hamada with no chemotherapy during this year and I hate to wish the days away, but we must look  forward with strength and hope to a new year  Thank you all for your most generous and comforting comments and good wishes throughout the year. We had a wonderful Christmas with our family staying with son Jo and Laura in the Chilterns and visiting friends and family. Hamada was most content and enjoyed very much this festive time. Now safely home again we shall look forward to 2010 wishing all those facing their own personal battles, hope, courage and a peaceful time.

I carry thee like the heavy rain drenched leaves cover the precious plants

I carry thee like the mother with soft-fleshed babe in arms

I carry thee on heavy days, when limbs are tired but heart is willing

I carry thee.

I think for you on difficult days when drug filled mind is fuddled and quiet

I think ahead for you with heavy heart filled with anxious thoughts of decisions that must be made

I think of you when struggles to move are hard and bones make creaks and eyes are dulled

I think of you.

I watch for you, I listen to your breathing, when night has fallen and stillness comes

I watch for you with hope you never stumble or fall

I watch for you to make that kiss you love, entirely right at night

I watch for you.

I dream for you that days will pass pain free and  be filled with God’s blessings

I dream for you when watching  Autumn leaves fall as trees again show their tangled limbs.

I dream for you that you will see the Summer sun, rise across the pastures green once more

I carry thee….

@ Copyright 2009

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

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

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

10561 view @ September 1 2009.

Calm are the seas we travel now,
the sail is down
how tranquil is the ocean,
we drift past the deserted islands
with their scattered palms and
fallen coconuts,
we lay on the deck, with bronzed
skin and salty mouths
calm are our seas,
the soft magnolia smell of warm breezes
whispers through our hair
all is blue, placid and serene,
I am here with you, for once
essential as the mainstay
Calm are our Seas…

Photo: Personal Oil Painting – somewhere special in Oman.

* N.B. See Comments for Dedication.
@ Copyright Susie Hemingway 2009

Its’ strange how you know as soon as the consultant says “please have a seat” Some how you sense this is not going to go the way you so wish it would. Even chatting to the very pretty receptionist whom we have come to know over these years did nothing to allay my fears. Although Hamada had his bloods taken very quickly on arriving at Haematology yesterday and the waiting for the results was really very short indeed. I found it so difficult to sit patiently and concentrate on anything. Hamada always sits so calmly and yesterday buried his head in an interesting ‘Flight’ magazine. I nearly always listen to something calming on my ipod or read, but yesterday found myself reading the same line over and over again, being an avid reader this is not something that normally happens to me I ‘drink’ words as fast as I can. For me these consultations get more difficult as the months go by. Well a couple of results had not change too much – we are grateful for anything good! – the Haemoglobin was a little lower at 10.1 the Bence Jones was pretty level on last time results at 0.04 and the platelets had even risen a bit to 51. Then doom hits you like a weight sitting on your chest, the not so good… White Cell count now at the lower 1.5 and the Neutrophils at a very poor 0.72! and the dreaded Para.Protein*(M.Spike) is now at an alarming 10.7 !!

We discussed again with the Doctor what plan of action would be next and how far we should allow the Para Protein to rise, before the next battle begins. This depending now on a second Para Protein test done again yesterday,checking and double checking.

The Doctor stills feels Hamada should hold out longer, as he seems well enough in every other respect, some pain in left shoulder, back when moving and Oh! so VERY weary. So the figure of P.P. (M Spike) at 20, was thought to be the bench-mark for Hamada to start with Velcade. This figure of 20 seems high to me? I do understand the need to balance between the very poor blood counts and the rising P.P.
The Doctor also mentioned Revlimid again and this would be their second choice of action. Both extremely harsh drugs that must be considered very carefully.

I am aware of the recent news reports in America about our National Health Service here in the UK. I would like to assure any of our American friends, that what is reported in your press and on television, is nothing like the care and attention we receive here. Our consultant and his team, are well read and very aware of all the innovative work that is being done at such places as Little Rock,Arkansas. They seem very well versed on all the latest medicines and nothing is being held back from Hamada due to cost. Hamada drug regime is approx forty maintenance drugs per day and one 60 micro gram injection of Aranspt Darbepoetin alta, per week. He has been spared nothing and for that, I am eternally grateful. I would welcome any comments on this, email or here, on the decision to wait until the 20 PP mark. Thank you good friends, who bother to leave comments here and for caring to following Hamada’s Journey.

*Myeloma cells characteristically produce and release into either the blood or urine monoclonal proteins. Monoclonal proteins are referred to as either, M-protein, para protein or M spike. They are terms that mean the same thing.
The monoclonal protein is an immunoglobulin and in myeloma cells one or more mutations have occurred in the genes responsible for immunoglobulin production. Typically, the antibody function of the immunoglobulin is lost and since it is not performing it’s antibody function normally, more and more are produced therefore causing an increase in protein levels.

The faces staring out you see

a legacy from the past

linked by love it seems to me

a marriage that will last,

this primed, set and ordered way

made this for Miriam, a special day.

The ladies all in hats so fine

brought in boxes and decked in time,

dripping with flowers, covered in lace

see how the little boys know their place.

Brush your hair, pomade at will,

shine your shoes, bring Grandpa’s pills!

Sparkling jewels on collars and cuffs

has Aunt Maud brought her muff?

our handsome pair have walked the aisle

a special breakfast in a while,

but now we must look our best

for Hubert’s ‘heaven’ in nineteen eleven.

Don’t forget your gloves or cane,

dear God, don’t let there be more rain!

bring the chairs for we must pose,

young Jimmy please to wipe your nose.

Are we ready in our places,

a little stern, for happy faces!

Poof and Bang! the camera goes

who’d have thought the world would know…

All rights reserved with no reproduction of Photo.

Copyright @ August 2009.

With special thanks to Ged Tucker for the 1911 Family Photo

and also to Janey  Johnson for the restoration of this wonderful Photo.

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

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

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

I dreamt of having boys you know

a thousand years ago,

tall strong  bright eyed boys,

who’d make me laugh as I grew old,

good honest loving boys

with values and a  ‘Joie de Vivre’

two boys would be just right I thought

to stand with me in times of strife,

that they would be – seamless friends,

I could not ask for more.

I dreamt  I would ignite their courage

infuse – to follow all their passions

and watchful for eternity I saw,

their dreams painted on perfect smiles

as brushstrokes make a painting,

and a sapling  makes a tree…

a thousand years ago

my boys did come to me,

I dreamt of having boys you know

a thousand years ago…

sometimes dreams snap and break

but sometimes dreams come true.

In Honour Of Matt’s 40th Birthday. June 2009

All Rights Reserved @ June 2009

Although you’re down and feeling blue

a little bit dreamy not wanting to

talk or read,  I understand,

just love smiles will do…

I’ll wrap you soft as feather down,

and feed you from a silver spoon,

bewitch you with procured delights

just return those love smiles tonight.

I’ll fill the room with bergamot

and camouflage  your pain,

find the crystal glasses

and then I’ll pour champagne,

unstring my heart like oyster’s pearls

enthral at just one glance,

if you can muster just for me

a ‘love smile’ when I glance.

I’ll soften all those noisy vowels

when cooing gentle mantra,

and even toast some butter crumpets

or pick a  Shakespeare rose…

and as the peace from pain

like absolution comes,

as when the scent pungent and loved

reaches to your nose,

smile for me beloved one

those ‘love smiles’ that I know…

All Rights Reserved @ May 2009

www.myeloma.org.uk

You rest in doctors room the struggle great,

deep in reverie while you wait

as musing you gaze, far from me

I wish we could be home for tea…

but more than this, my wish for you

to not have this life of waging war,

to beseech and plead the pain away

this fervency of another day.

I wish I could bewitch this ‘beast’

to lure in cruel felony at least,

I wish we could be home for tea…

To listen and note every word

erroneous statements, you must see

as babble on, this fallacy

I ask for more, that will not be,

I wish we could be home for tea…

your shoulders crumple, your limbs are weak

but still you smile, polite, unique,

me bitter and hissing I sag within

this undeserved and stricken life

goes through my heart as doth a knife

I wish we could be home for tea

Oh! I wish we could be home for tea…

All Rights Reserved @ May 2009