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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

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…

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:

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To purchase including packing and postage worldwide:

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Photo:  courtesy of Janey Johnson Photos.

A Power Within Available via here

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Fifty Poems of Love by Susie Hemingway.

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.

Fifty poems of Love now available to purchase: Link Here

http://www.susiehemingway.com/books  All prices include P&P

              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~

Silver shimmering crest of light

that shines and glistens on special nights

but only seen by those who love,

for those who notice this moon above

fluorescing glow of softest light

that shines on waves in rolling flight,

this secret candescent light that holds

a special place in lover’s souls,

when the flotsam of life is tearing at you

lift your head and see this view.

When life’s foreboding ways do seek

to sometime knock you off your feet

take your dreams and shake them loose

never stumble for you will see

this shining luminosity of moonlight free,

for on these magic nights of love

that glow for lovers from above

especially for those entwined souls

for secrets between them never told

tilt your head to gaze above

to see this gemlike moon of love…

This poem is dedicated to Sally and Maurice. October 2009

Copyright @ Susie Hemingway 2009

Photo courtesy of Sally Leeves

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 .