A Power Within

Under a lovers gaze stoic and stubborn

I fight for you,

in watchful waiting the power of my mind

spurs me on…

The tiredness of these determined efforts for you,

to strive is hard to do.

With strength needed as not to succumb

I walk on and on,

for there can never be amongst this pain

nothing left for you ?

Don’t ever think I do not clearly see

for if only my eyes could shut out all,

to mar, inflict distress, destroy the purity of,

impair, fatally ruin – All this !

Through my smiles, the anguish of my heart,

flows in time with this wretched beast

as it continues it’s wicked path.

Under my lovers gaze, I fight for you.

*“There is freedom within

    There is freedom without

   try to catch the deluge in a paper cup,

  there’s a battle ahead, many battles are lost”

*Extract from “Don’t Dream Is Over” by Crowded House  Written by Neil Finn 1987

Photo courtesy:  Matt Rutherford www.mattrutherford.com

© Susie Hemingway 2010

It was a sad day for us both yesterday which brought  bad news that Hamada is just not responding well enough to the chemotherapy drug Velcade. With just eleven infusions received since starting in late February and  many stops and starts along the way due to a chest infection, severe reduction in neutrophils and platelets, it has been hard work for him from day one.  Now again the next and what looks like the last cycle of  four Velcade infusions- unless a miracle happens- will be supported with Filgrastim 30MIU/05 injections started yesterday and continuing throughout the next four infusions. Hamada’s Doctor at Lincoln informed us that a very poor reduction of 4.5 in para-protein level after eleven infusions is really not good enough and is  now most unlikely to make the 50% reduction needed  to continue. Yesterday Neutrophils were an alarming 0.68 and PP still at 14 !

So dear family and friends unless another miracle happens and we’ve had a few, Velcade will not be the wonderful elixir we so hoped would  work for dear Hamada.

Never forgetting how far we’ve come I’ve posted the above photo today showing Hamada when he first come home from Nottingham City Hospital after his Stem Cell Transplant. This was in late 2007 and there have been a good few battles along the way since then. With his courage, good medicine and management of this difficult disease, Hamada has beaten many odds and now once again is fighting his way forward, this time just having received his 10th infusion of Velcade. A few stops and starts along the way with lowering of Platelets and Neutrophils, a nasty chest infection, some needed G-CSF injections and the wonderful skills of the phlebotomist at Lincoln County Haematology department, who’s gentle care on extremely over used veins ( twice weekly, showing how delicate this whole regime is ) just constantly amazes me. Particular thanks goes to Jill who kindly uses paediatric phials for Hamada, these little things help ease the way, and with such gentle care, praise indeed.
We do not have the current Para protein M-Spike reading but are forever hopeful it has fallen again from the last 14.4 marker.
Bloods are holding: HB at 9.3 Neutrophils at 1.66 WC 3.1 and platelets at a great(for H)47! Kidney function is now 18%.
The journeys are tiring at least twice a week and sometimes four if other clinics need attending and on Chemo days, the wait is long between blood taken and the results but it is a tiny price to pay for any lowering of the myeloma burden and we feel joyful on the return from Oncology when success is had.
Although it is early days with the Velcade, Hamada is having no other side effects and seems brighter and with what I call his Dex face – looks better than he has for some time.
So never forgetting how far we’ve come, we forge forward with hope that Hamada will reach his 50% reduction target after the next six infusions and so be able to continue according to the NICE UK Ruling.

Addendum:
Hamada completed his 11th Velcade on Thursday but platelets dropped from 47 to 28 in two days, I spoke too soon! He received platelets again on Friday and feels much better once again. A weeks rest then check-up next Thursday and hopefully continue the Velcade the following Monday. Onwards to success DV.

Supporting www.myeloma.org.uk

You watch your family well my love

with twinkling fervency of pride,

not much I’m sure escapes those beaming eyes

whose rays emit relentless joy.

The room is filled with noise and bustle

laughter amid the smell of pungent food delights

and scents of Capri Fig Frangipani

as candles burn long into the night.

Your efforts never go unnoticed not in my eyes,

burden of encumberment hampers movement,

such little comes now from tired voice but eyes embrace it all.

Just quietly watching… makes you the man so tall.

My heart suspends this time as softly plays

the husky subtle pleading of Lamontagne,

good French wine is poured amid the illuminated sounds

of laughter,

as  we count our blessings of these vibrant days, bathed in burnished sunlight of joyful laughter with you.

I glance across at your smiling face

just quietly watching…

All Rights Reserved @ April 2010

We waited the hours together,

us and the man with the white knitted hat,

pale and often slipping down in his chair he looked desperately ill.

His wife sat tiredly and patiently by his side.

He joined us once again sitting opposite, in the ‘chemo chairs’ the four of us waiting as if for a bus, but really to win further days.

The skilled nurse attached the Cannula to his oh so pale hand, difficult but finally achieved, he smiled a weary smile across at me.

The jaunty white hat seemed to perch on top his shiny pate

far too small and not really doing the job it was intended for.

My heart ached.

I smiled back, while my man was busy being attached to

the life giving elixir that would hopefully give them both extra time?

I offered up my usual prayer.

The man with the white knitted hat whose face was

waxy pale, glanced across at us.

His wife or carer I noticed had swollen ankles,

perhaps from the many hours spent caring and fighting ‘this beast’ that was trying to take her husband from her.

The vials appeared like a sunburst of golden treasures, “it seems  we are travelling the same journey” I said

“Yes, it’s a tough long battle isn’t it” said the man with the white knitted hat.

I turned my eyes to see the beautiful slim brown hands of my beloved, my Father’s ring adorning his  right hand resting on the heated pillow.

Then looking across at the pale transparent hands of our new friend I noticed,

that the first two fingers of his other hand, were tightly crossed.

How my heart ached….

All Rights Reserved @ 2010

Are you a jewel?

Priceless exquisite, cut of flawless clarity.

A glittering seven carat white diamond perhaps?

A gleaming diadem of chosen stones or a

desirable vibrant emerald, of richly sparkling hues.

No!

For you are shades of purple…

Purple like the dark rings that surround your eyes,

Purple like the feeling of these past weeks,

Purple coloured days that were draining, not pink.

Purple coloured nights that stretched forever,

as purple as the scarf I wore today, for I was sad.

Definitely purple but no amethyst are you

a solitaire yes, a single flawless gem.

A most valuable priceless jewel and extremely rare.

A Jewel to fight as you do,

Yes! A Purple Diamond,  that’s you….

Written with love by Susie Hemingway for all those who love.

“Shades of Purple – A Jewel Perhaps” is now to be published by United Press in their new book “Reflections”

All rights reserved @ 2010

Hamada continues  quite well with the Velcade infusions twice weekly, plus 20 mg of dexamethasone x 4 times weekly,and also the aciclovir for 21 days, this information is really for anyone following the medications Hamada is receiving and I know there are a few.

Hamada is having no other worrying signs other than a chest cold which is without temperature but still a bit concerning as it is taking a good time to leave him. I shall mention it tomorrow when we return for the blood tests and the further Velcade, ( if it is permitted and  the bloods are good enough). Hamada received radiated platelets last Friday, some may wonder why radiated, well that is because he has had a Stem Cell Transplant and  any blood products received must be pure.  The blood comes to Lincoln from the Sheffield Blood Bank and we are continuingly grateful for this wonderfully good care.

It has been a long difficult week with the journey back and forth to Lincoln and the interminable waits between the blood taken, results going to the Oncology Unit and then if alls well, the Velcade given, a wait of three and half hours.  So very tiring for Hamada and also for me to a much lesser degree. Still we fight on, with the hope that all will be worth it and this drug one Hamada has never used before, will reduce the Para-protein and thus give Hamada a good break from chemotherapy once more.

There was a discussion on the List- Serv Acor this week about using the term ‘beast’ for the illness of Multiple Myeloma.I think my poem The Fight Without Choice shown below,  tells how I feel. For although the word may be sad to hear for MM sufferers, to me and I suspect for many Caregivers who are also badly affected, it is indeed a beastly intruder. I have received so many praising emails this week regarding this poem,  some  I have shown in the comment section here.

Be well dear Sufferers and your Carers, for it is our friendship and our continuing courage that will see off this Beast.

The Fight Without Choice,

It was never a choice was it?

it sneaked in and through

along and round,

this nasty wicked beast that coursed

along the channels of our lives.

It tangled and tried to spoil,

bent, broke, quietened and flawed,

it tried to rob, steal if you may

inflict, damage and take away.

It encumbered hampered, distressed and sapped,

this dark encroacher that went to far.

Still it did not spoil or mar

love twixt us two,

this fight,

without choice.

Copyright @ 2009

As my poem “The Fight without Choice” written in 2009 tells us:

“It was never a choice was it? It sneaked in and through, along and round, this nasty wicked beast that coursed along the channels of our lives”…

How true these words seemed to me during the first few months after Hamada’s diagnosis with Multiple Myeloma, when this ‘something nasty’ found its way into our almost perfect life. A terrible feeling of being out of control and frightened that I may not be ‘up to the job’ of caring came over me. Up to the challenge perhaps I should say, with this shocking and disturbing change that must be faced. Yes a selfish thought one may think but would I have the strength to cope with everything that suddenly seemed to be taking over and would without doubt, change both of our lives. It’s huge and I have spoken of this before and know now from many friends all in the same position of caring for a love one, how these feelings of fear, coupled with lack of knowledge sometimes seem to overwhelm you in the early days of diagnosis. A big learning curve when as often happens, you have been leading a  life with more freedom and why not? For many of us perhaps for the first time now without children who no longer need our constant care. For me I had already been looking after my elderly Father who had come to live with us at “Summer House” after my Mother died. Although Daddy had Diabetes and was somewhat frail being in his eighties, he was a wonderful addition to our family life and so enjoyed and took part in all we did, never a burden, just a wonderful elderly gentleman who brought so much to our lives in every way with his wit, charm and chats over tea and tales of the war years. Although I did always have to think about his welfare regarding his meals, being available every day on time, and making sure he was well cared and catered for. I never found it a strain or burden and in many ways he was very independent. Just a little extra laundry, a larger heating bill and an occasional reminder of hospital appointments or collection of his prescription drugs but never in any way the same, as the challenges I face now.

Multiple Myeloma is a strange and unique illness, unfolding so differently for almost every patient. Its individuality is because the pace and speed of the cancer varies greatly from person to person and very often many are not diagnosed as early as they should be, so in some cases damage is well underway. Sometimes affecting the kidneys as in Hamada’s case or attacking the bones before treatment even begins. So the caring of someone is intense and always unique. Finding information and the good knowledge that you will need to deal with this complex disease starts the moment the kindly Consultant tells you “Myeloma has no known cure but is manageable” is a terror all by itself !

Where to start? What will we do? Whom should we tell? What are all these drugs for? Is this the right course of Chemotherapy that is being offered directly? So much to absorb and for someone without medical knowledge but desiring to do the right and the best thing for their love one, it is an intensely thought provoking, worrying time.

All these questions seem to appear overnight and fill your mind, blotting out all other things. Over the past four years I have chatted about these engulfing feelings with many Carers and all of us experienced the same fear, that just this little sentence often very gently said “You have cancer” changes irrevocably, not just the patient’s life but the Caregivers also.

Of course like any other subject we cannot be expected to learn this knowledge overnight nor will we. I was lousy at Maths and still am, so all the science side of complex readings were far too much for me to grasp unless broken down into percentages or nice little scales or diagrams to follow and yes your Doctor or Senior Nurse will make all this easier to understand, if you ask!  There are so many willing to help you once you make the start. It will never be something that you can ignore or pray will go away, keep asking all the questions you need , do not allow yourself to be rushed at consultations, take your note pad with all the things you need to know and write the answers as you go. It is a big learning curve but saves so much worry further down the line. You can find much support if you are lucky to be able to use the internet. Like for example the amazing American list-serve ACOR, which you can join quite easily through and via your emails. Where approximately 1,500 MM Patients and Caregivers all asking questions about Multiple Myeloma, then sharing their knowledge on-line with answers to many of the vast range of things that are worrying and affect us all – I have made friends with many in the same situation as me and we check in on each other via Facebook, Oh! the joys of modern living – It is of course for you to pick your way through the daily information entered there. Some suggestions will not be right for you nor would you choose to use them, but just by reading these daily emails, gives you further very useful knowledge. I kept a file of information that may not be understandable in the early days but will be useful later on. Knowing too that there are many like you working their way through this minefield of needed information gives one great comfort and a feeling of not being alone as you support you loved one. You will need as much information as you can gain to help you understand the complexities of this difficult illness.

With a little skill and some good management, your ‘new life’ although very different from before MM, need not be too difficult to handle. There will be days when anxiety fills your mind and everything crowds in, when visits to the various clinics are tiring and tough or while undergoing Chemotherapy which can be but is not always the horror stories you hear.

I have a few little tips that have helped me greatly during the past few years and I will share them here with you.

My very first consideration was a good sensible place to store all drugs, it is no good having them all over the place and not in a good rotation order, easily seen and laid out in a good clean dry cupboard makes ordering easier and the use of compartment pill boxes are in my view essential, a small pocket pill box is great for days out or travelling, ready for the next dose. MM sufferers with pain, do not want or need to be kept waiting for their pain medication and it is so much better if you are able to get ‘in front’ of their pain. Clear good management regarding drugs is essential. Again if you don’t understand doses ask and ask again.

Just a little forward planning can make a long day at the hospital a better one. I love music so I take along my iPod or DS in an attempt to keep my mind occupied. Or my notepad for writing as most of my readers know I write my feelings out in the form of Poems which help me greatly with release of stress. Hamada takes his Crossword or Sudoku book. The time passes quickly if you have something you like to do, instead of just gazing into space. I also try very hard to prepare a meal the day before, ready to go as soon as we arrive home. Being the wrong side of sixty I get tired too and after a long drive do not wish to be chopping and cooking when I could be sitting with a nice cup of tea.

Get good bathroom aids fitted, a seat in a shower is such a safe way for weary bones and a good strong handle to grip for someone with unsteady legs – and they can arrive at any time -is a must. So much better to be prepared.I can hear many saying I don’t need that but chemo has a habit of making even the strongest legs a little wobbly on occasions.

When someone is having problems with their blood they often feel the cold more than a healthy person, I have found the use of small throws or light blankets a boon. I have several in the sitting room when although everyone else is warm and the temperature seems just fine, the use of these rugs can be all that is needed, to give comfort.

Motivation too, is something that we all need from time to time but when you are feeling tired and unwell, a short nap is I believe essential,  just as much for the Carer as the patient, so when Hamada takes a nap I try to do so too.I know there are many MM sufferers still working but for the folk who spend many hours at home, making special times is vitally important too.  So when feeling refreshed such little things as coaxing someone from their bed or rest time with a promise of a favourite little treat. Fruit, a piece of cake or biscuit with their tea, a game of cards or anything that makes a change of scene, then becomes a nice ritual and makes all the difference to the structure of their day.

Checking that clothes are comfortable, and can easily be removed or moved up the arm make a big difference too, especially when undertaking the many blood tests that must be borne. My husband had for many years worn the very English brogue type shoes with laces, but I managed to persuade him that he could still wear his chosen leather shoes but slip-on’s now, that small change makes his life so much easier. Little carefully thought adjustments mentioned kindly, help with independence and make for good wise support. Very often the person who is unwell cannot see the little adjustments that will all help with continued independence but the Carer can. Gently undertaken, there are many things that will ease their long term burden and ultimately yours too.

Smile a lot, now I know this seems silly and sometimes the last thing you feel like doing is to smile (but smile now… see ! it makes you feel  so much better) it helps ease the way even on the most difficult day, even when everything seems to be crowding in and much is going wrong,  try a smile or even a laugh together, surprising how it always helps. Hamada and I even when it’s been the worst of days  often find ourselves laughing together at the absurdness of it all. The Doctors and nurses love it too; it must be such a long day for them when everyone is miserable.

Now to finish with a little verse that was sent to me when I first started this journey.

We may not know we have it, till we’re well into the race, Or feel we’re nearly overwhelmed, by challenges we face –But then we look much deeper for power to succeed, And find we have an inner strength that meets our greatest need.

Do not let this nasty thing that arrived without invitation, spoil the time you have together, make every day at least a mini masterpiece. Love and smile a lot, we cannot change the hand that has been dealt but as Carers finding our inner strength, we can change the way we handle it.

Carpe diem.

www.myeloma.org.uk

All rights reserved.

People’s eyes tell their story

as sitting quietly deep in thought,

magazines  remain unread,

heads often bow in contemplation.

A visit to Oncology is a serious affair,

the television that no-one watches

or at least in glancing view

doors that often open

but never seem to be for you.

Faces flushed in anxious  stares,

no one likes sitting here

on daily wiped plastic chairs.

The receptionist whose eyes

seem not to engage,

that must be thinking of supper

with her lover or of special days,

perhaps of summer holidays

spent in some sunny Costa’s  far away…

You wait thinking best thoughts

and then into the ‘hands clean zone’

weak smiles greet you there,

no holidays for the many

connected to their life lines,

some sucking lollies that cool

the fire that hopefully will cure all,

a visit to Oncology is a serious affair.

The “ding ding dongs” of bleepers

tell in never ending harmony

a different ‘chemo story’

for those sweet worried faces sitting here,

some of fear; their eyes resigned

to all that fate may bring.

I look at the signs around the suite

telling of special wigs and treats,

the cleverly placed plaque

above my head that reads

  “God give me the serenity to accept the things I cannot change”

so beautifully written

in perfect flowing Italic hand

by someone who perhaps

also spent many hours in this room.

I smile across at the lady opposite me,

her face lights up

but her weary eyes tell me more,

she says “ I’ve seen you before,

it’s a long haul isn’t it?

Yes” pretty lady with the pink ribbon

on the black scarf covering your head

“it’s a long haul but  one we will win” 

I shall look for her next week and pray she is there….

A visit to Oncology is a serious affair….

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

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.

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

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.

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.