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To Fight Again-Thoughts by Susie Hemingway
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
A Favourite Poem. – Desiderata
From time to time I thought I would post a favourite poem or piece of written work that means a lot to me:
Desiderata.
Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant, they too have their story. Avoid loud and aggressive persons, they are vexations to the spirit.
If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs, for the world is full of trickery. But let not this blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism. Be yourself. Especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.
Therefore, be at peace with God, whatever you conceive Him to be. And whatever your labours and aspirations in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams; it is still a beautiful world. Be cheerful. Strive to be happy.
— Max Ehrmann, 1927
Perfect rules for life I feel – what do you think?
Personal Photo – Trees at Hemingway.
To Fight Once More.
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…
Through the Eyes of a Child.
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
All Is Love – For Valentines Day
Love is a perfect note; love is a certain smile, or a gentle touch.
It is the dripping juiciness of ripe mangos on a parched tongue
or the smoothness of rippling silk as it touches your skin,
or perhaps the sweetest strawberry dipped in liquid chocolate?
Love could be the aroma of double espresso just before it reaches your lips,
or is it the woody smell of a newly lit fire?
All is love…
Love is also the stormy greys of long worried nights,
love is restless broken sleep that drains energy from your soul
love is eyes heavy from sadness,
But love is also the ashen face that looks at you when days are bad and you are brave.
Love is you, starting the fight once more as realisation arrives in your eyes.
Love is also the beautiful eyes of family members whose tender glances record their own story.
Love is the strong arms that support and guide your way.
Love is the dearest child who stokes your hair with such beautiful little hands.
Love is our private moments that make difficult days better,
love is that look across the room that says it all.
Love is all these things…
And all these things are love,
and you.
Photo courtesy: Janey Johnson Photos
All Rights Reserved.
Today’s visit to Haematology at Lincoln
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.
On The Edge Of A Cliff – A Carers Perspective
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
“Love Poems” by Susie Hemingway.
“A Power Within – Poems Of Love”
To purchase including packing and postage worldwide:
http://susiehemingway.com/books/
Photo: courtesy of Janey Johnson Photos.
Silence Falls – by Susie Hemingway
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.
