Category — multiple myeloma

Late winter months as news imparts

the gravity of this new start

dear God as we  begin this fight

in restless days and feverish nights,

as poison flows through damaged veins

please not let this be in vain…

Smaller smiles through struggling days

of waiting for the nausea waves,

understanding strange regimes

jab jab as harsh it always seems,

as draw for tests to go ahead

when all he wants is his fresh clean bed.

Perpetual hours that make me sigh

impatience that since  child has always been

and now this purgatory of hopeful scene,

as tedious the walks I make

through lengthy corridors and doors of pain,

please Lord! let there be a gain.

How good the compassionate nurses who

bring solace to my broken warrior,

a smile or a tender word all make a difference,

I notice a gentle hand on his shoulder,

in their relentless comforting care.

I also notice many sitting there,

with their dreams of better days…

My mind whirls as the precious cylindrical vial arrives with pomp and ceremony,

to scientists far away who have tried to bring

with knowledge gained, further days.

It is received with hope and joy

but will it work to overcome?

for this Man who waits expectantly with those oh! so trusting eyes.

A Poem about Chemotherapy  February 2010– all rights reserved

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 He must reduce within four cycles or it will be withdrawn due to the enormous cost of the drug.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/

To purchase including packing and postage worldwide:

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

Photo:  courtesy of Janey Johnson Photos.

Crisp sparkling crunchy views across this linen land

trees bow beneath the  snow laden branches

hungry birds swing and pull at fat-filled gifts that hang from frozen lines, quiet is this life, quiet is this world.

Such beauty in the stranger shapes of intrinsic white on grey as silence falls and covers sadness like a soft downy wrap, comforting like the arms of angels protecting those we love.

This winter harsh and cruel will not change much for us

it is a time to be together, a time for closeness and of warmth, a time to renew strength to start with vigour our battle.

As crystals melt their prisms, the brushstrokes change

the white that enhances the beauty of this land.

All Rights Reserved @ 2010

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.

Christmas time for you and me

tis’ very different I’m sure you’ll see

the favourites that please you and me

complete this yuletide picture…

Christmas bright with candlelight

good friends to share with you,

log fires that crackle, and ban the cold

toes warm as toast on rugs of old,

scented smell of cinnamon and

warm mulled wine to sip,

when carols sung of partridges, turtle doves,

winter crystals fall as snowflakes

from heaven above, to settle

on gleeful warm faces, catching

their lashes as they quicken their paces

to peep in pretty windows dressed ready to share,

a few of these favourite things.

Jenny’s warm crisp mince pies

adds a sparkle to your eyes,

quince jelly and all those yummy things

brandy butter and children’s grins,

at snap of pretty crackers, mottos

laughing faces and silly chatter,

sweet smell of oranges, chestnuts too

Oh! to share them all with you.

Coloured garish paper hats, that special robin

that came and sat

near mistletoe for that special kiss,

we hang in bunches not to miss

the wonder of the child’s eyes

as underneath the tree is spied

coloured papered box entice,

if you’ve been good, if you’ve been nice?

Family, friends, laughter, fun..

“Merry Christmas” special ones.

Christmas time no different you see

Just as long as you’re here with me.

All Rights Reserved @ December 2009

“A Power Within – Poems Of Love” Anthology of fifty poems selling world-wide and available to purchase here.

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

Proceeds to Multiple Myeloma.

Link here http://www.susiehemingway.com/books/  to purchase this  richly  designed poetry anthology filled with Poems of Love in diary form. More than one hundred  pages telling ‘our story’

              Later this month my poems are to be published in a book called  “A Power Within” It is  pleasing  to see more than fifty of these poems of love, all together in this  beautiful book with it’s rich coloured cover-not I might add, the beautiful photo I leave here for your delight today-and 105 pages, which would look beautiful adorning any coffee table. I am thrilled with the result of the proof and with the superb layout done by Matt Rutherford of  www.mattrutherford.com  thank you Matt. More news on the release date will be here later this month.

~Sunset Photo courtesy of Colin Brown – All Rights Reserved~

As friendships and knowledge builds with other Myeloma sufferers, it is easy to understand that this Cancer unfolds so differently for each patient. With a huge variation in symptoms, it appears such a diverse disease that seems to stumble on the weakest organs making it’s own unique way of attack. For some MM sufferers the damage unfolds with lower back trouble or in long limb fractures or breaks. I know that  a neck fracture was the first sign for a friend that something terrible was wrong and then much  later  a diagnosis of MM was made. How differently this disease shows it’s signs in each patient.

For Hamada it was kidney failure that came out of the blue with no signal at all that anything was amiss, just an unusual feeling of tiredness. For sure it is so important to get an early diagnosis before the myeloma does serious damage to vital organs but how many of us get regular blood CBC’s? very few I would imagine in the UK. Unless like Hamada who did contract work at times and needed good health checks for insurance travelling abroad etc. In many cases this disease could and does go unnoticed for many months,  so the damage is already done. Although Hamada succumbed to MM he was in one way, very lucky to have had an early diagnosis as we believe that having had a blood test only six months before the very one that picked-up his kidney failure,  certainly played a great part in getting him to this now, three years six months point. Early diagnosis I believe, is paramount and vital, we all know that the damage done by Myeloma cannot be reversed but it can be brought under control. Still with good care it is important to stress, many patients are now living long and productive lives.

Hamada was immediately prescribed a vast array of maintenance drugs from day one. Including some to protect as much as possible, his bones and the lining of his stomach and gut etc. It is so important to keep regularly to the times of taking these drugs and injections, not missing out or delaying in the filling of prescription etc. Good continuous management of drug awareness, taking as much care with infections, avoiding places and people with colds or worse still  flu.

Diet is vital to the success of a longer life. Good tasty meals that contain a good variety, covering all vitamins and minerals and for some little and often is the rule. In the case of Kidney damage, eliminating salt and potassium and increasing liquid intake to a reasonable two litre per day amount, has helped Hamada greatly. I know that there are many MM sufferers who still enjoy a glass of wine, and why not? But if the kidneys are affected not really a wise move, the rule always being, water is best. Hamada now has 15% kidney function when at diagnosis he had only 6%. A great improvement that has kept him from dialysis.

The very difficult part is that Hamada’s Para Protein-an important marker and indicator in the activity of the cancer- is rising once again, and the decision will have to be made shortly, with regards to the next chemotherapy regime for him, possibly Velcade. Whether he is really strong enough to try again with more chemotherapy and if this is the right drug of choice at a time, when he is enjoying a quiet but steady pace of life, is a most difficult decision to arrive at. The damage from this drug would certainly be detrimental to parts of his poor quality blood, which although not getting much worse, is not improving either but could bring down the para-protein  and such, help to eliminate further damage to his bones and organs.

We think the New Year 2010 will bring the answers to these decisions, Hamada has achieved so much and done so well we feel, for someone given a prognosis of only six months at outset . He continues bravely and without complaint about anything, a great lesson to us all I feel. So steadfastly we make the most of each and every day with love and the best possible care we can manage. We sincerely wish all our friends in the world of Myeloma (sadly there are many) peace and hope, a decent quality of life and the very best care possible from your providers but most of all, love and kindness from your carers .

On the 8th of October it will be two years since Hamada’s Stem Cell Transplant and we once again thank Prof. N. Russell and his wonderful team at Nottingham’s "Centre of Clinical Haematology" for their expertise and for securing these past two years for Hamada. We continue with joy at each given day and try to make everyday as special as we possibly can.

In celebration I post here Hamada’s favourite Poem, apart from mine! ( I’m jesting of course)

                                                          ~

From the Springtime of Love by Khalil Gibran.

Love has no other desire but to fulfil itself.

But if you love and must needs have desires, let these be your desires:

To melt and be like a running brook that sings its melody to the night.

To know the pain of too much tenderness.

To be wounded by your own understanding of love;

And to bleed willingly and joyfully.

To wake at dawn with a winged heart and give thanks for another day of loving:

To rest at the noon hour and meditate love’s ecstasy;

To return home at eventide with gratitude;

And then to sleep with a prayer for the beloved in your heart and a song of praise upon your lips.

Khalil Gibran 1883 – 1931