Recently I left a comment on a fellow bloggers site thanking her for her generous continuous support, not only to me but to many other Multiple Myeloma sufferers and their Carers. Many hours of her time must have been spent reading and entering her sensitive most knowledgeable comments worldwide. She does so with grace and clarity unstinting in her kind praise of my diary poems and has been following Hamada’s journey for a number of years. She always seems to pick just the right time for a comment to bolster flagging spirits and I have noticed her words when most needed on many blogs around the world. This to me is just the most perfect use of blogging.

When I first started entering my thoughts in the form of poems four years ago it was the only way to find an outlet for my overwhelming sadness and terrible frustrations at the changes that had befallen Hamada. It had been suggested by my Son whose understanding of my need to write my poems and his great knowledge of blogging guided me to this unique world. I could vent my feelings sending my words into the ‘blogosphere’ never thinking or caring if they would be read or not. Cleansing my mind very often of my innermost feelings, thus saving my sanity from the injustice of it all. I have spoken on the radio before of my need to record this time of Hamada’s journey with this most difficult of diseases. When asked has this been helpful to me, I answered to say with sincere honesty that yes this has most definitely been the case. What an amazing outlet is this most modern of all media. I have been writing poems since a young woman, so for me the easiest format was to place my poems in a diary form. Releasing as the need came, the words of my heart.

My how from little acorns grew the biggest tree! Overnight my blog was visited and within a short while I had found this wonderful support network of other MM sufferers and their wonderful caregivers. All seeming to want to read my poems and I in return was able to not only glean the information I so badly craved about this illness of Multiple Myeloma from their sites. To subsequently understand their knowledge, the complicated medical jargon and learn about the different circumstances of these wonderful people but also and most importantly for me, to acknowledge the pain contained in their web-pages. We very quickly formed a united front against this beastly cancer that has intruded into our lives and have over these past years formed great friendships, with new bloggers arriving weekly. We spur each other on in times of crisis and rejoice and praise together in the good times. We feel each other’s pain as if it was our own, can relate and understand the many problems that Multiple Myeloma brings. How a kind caring word helps a difficult day.

Many of us, Patients and Carers worldwide have also formed friendships via the much maligned network of Facebook, where we reach out the hand of friendship daily, supporting each other where we can. For me  this is so much better than the psychiatrist couch or local Carers group which would be too difficult to attend when caring twenty four hours a day and when time is so precious.

Of course poetry is not for everyone and certainly my poems of love cannot possibly be to everyone’s taste but in the years I have been blogging, much to my amazement I have never had a nasty or inappropriate comment, not a single one; and this week my first web-blog reached fifty thousand hits. I would never have believed the whole new world that has been opened to me through a few simple poems. I thank the many internet friends who choose to follow our journey and allow me to follow theirs. Not a path I would have readily chosen but Life with a capital L threw this Myeloma our way, bringing many in the same position with their friendship to offer, some joy amid the sadness. I know my Family, Myeloma friends and their Caregivers completely understand that for me to complete this journal successfully; I must always write my poems as a true recollection of this time. They must be an accurate account, so this does not always make for easy reading and for some who find them too sad, I know they won’t be read. For the many who send emails and place their lovely comments on my blogs, I thank you. For I also know that many find them moving enough to release what I know have been called ‘healing tears’. If this helps just one person in some small way to continue forward, refreshed to yet another day, as it does for me when the words escape from my mind, then I consider it a worthwhile therapeutic exercise. I am aware that for many, writing of love and personal feelings is difficult and somewhat embarrassing, although this has never been mentioned to me. I am not so insular as to not understand this and it is a selfish purgative act so entirely helpful to me and after all was the very reason I started these blogs in the first place. Many of my poems are sad but we have over the years enjoyed so many happy and immensely joyous occasions and I have tried to capture these too especially in my earlier poems.

Using this most modern media to vent my feelings and save my sanity has brought many rewards but mostly it has been the link-up of this simply wonderful group of kind and caring individuals who are all following the same path as me.

To the wonderful lady whom I mentioned at the start of this article, who has the biggest caring heart and provides such a service to those who are often in a sad and difficult place I salute you.

To the wonderful folk doing the very best they can daily for their families and loved ones and in the continued fight to help with the individual knowledge gained which we all share, in the hope a cure for this most wretched illness will be found, I stand in praise of you.

With loving thanks to my supportive family my special girl and men friends who never ever fail me.

Taken from: “Small Acorns “– written on the 4^th Anniversary of Hamada’s diagnosis of Multiple Myeloma. May 2010.

Copyright @ Susie Hemingway 2010

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.

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

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

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…

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

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

11 September, 2008

On The Edge Of  The Cliff – A Carers Perspective

Rather a lot of people have asked me " how do you keep cheerful " and " what keeps you strong when faced with such a change to your life"
So what is it that gives some the strength to keep fighting and staying strong in the face of adversity?

What enables some Carers to give their best and their continuous support day after day, when for most of us, burying our head in the sand or turning to run, would feel so much better. Well yes, difficult questions to answer. I know how different it is for all Carers, of the problems that affect us all and that no two people are the same or will have the same approach when confronted with devastating changes, not only to their love one but very often to their own lives.

For me after the initial shock and my goodness what a dreadful shock it was, I spent many nights thinking of  how I would find the strength to deal and do my best with the awful changes that would befall us. Having only just retired and with both of us looking forward to a more relaxing time I had hoped for some new adventures, lots of dancing perhaps and certainly a lot more travelling.  Time for swimming, holiday time and plenty of walking together. Would all these have to change?  When Hamada in May 2006 was rushed to Lincoln Hospital and then on to Leicester Hospital with sudden onset kidney failure, found after a routine blood test, I was in severe shock as anyone might be.  After his first night in Leicester I returned home alone and immediately went to my PC to look for the causes of sudden kidney failure. I remember writing on a scrap of paper the three things that matched closely Hamada’s condition, the second on my list being Multiple Myeloma. It was something at the time I knew very little about, I did know, it was not as yet, a curable cancer. So when the next day, the Doctor with a rather grim face, came to tell us the results of the barrage of tests taken and the devastating news, I passed to him the small list that had been tucked in the palm of my hand asking " is it one of these " and in my mind thinking, don’t let it be the second one, but it was! I think from that very moment on I decided that for me, the only way to confront this crisis was face on, asking and learning as much as I could every step of the way, I was standing on the edge of a cliff with a strong wind blowing. I could dive and swim away, shut my mind or bury my head. I did not want this thing to be happening to us but it was. So I decided to turn to face that strong wind with as much force and as much knowledge about this illness, that I could managed to glean and from every source I could possibly find. Knowledge will give me power. If I could understand as much about this disease, as my small brain will allow, it would enable us to discuss and make good choices each time we needed to fight. Is it the right time for chemotherapy? should a stem cell transplant be an option? All these questions are asked daily by people with this very serious illness. I wondered, are these drugs the safest Hamada can receive? will they obtain the results required? I needed to learn fast, I needed to learn about the drugs that would damage further or take away the last remaining percentage of kidneys working. Oh yes! it happened, the young Doctor who prescribed by mistake, drugs for Hamada, that would have wiped out any remaining kidney function, had he taken them. After all the months of chemotherapy, all the money that had been spent getting him to and through a Stem Cell Transplant, had I not read, had I not intervened! With my newly learnt knowledge I was able to check what had been prescribed, query and shout loudly before any damage was done. For me gaining as much knowledge as I can, seems the only way to protect someone who is unwell and cannot do it for themselves. Many I know will think too much knowledge is a dangerous thing when dealing with medical matters, perhaps some are saying I bet she interferes too much. I do not believe this to be true and I really don’t care, for without this knowledge how can we make good judgements when given the very serious choices we are expected to make.
I keep cheerful because I am very lucky to have an amazing family and good friends who support me in so many different ways. Our children who bring light and joy every time they visit and the fun we all have together and their constant support in cheering Hamada on. My dear friends who never fail to phone, often picking just the time when I need cheering up a bit, when the day has been tough or I am tired because I have spent too long in Hospital waiting rooms, dreaming of all the other places I long to be. My dear Internet friends with their great messages and the American Cancer Network ACOR, a myeloma list-serve whose knowledge is just incredible and so often points sufferers of myeloma in the right direction.
How my heart goes out to those who struggle alone or may have families who do not understand, or even worse ,do not care about the strains of day to day living or caring for those with Multiple Myeloma. How badly it affects me when I see elderly folk appearing both to be unwell, struggling to manage their hospital appointments and to understand their ‘chemo’ regimes or their routine medications, they need our help. Then again I know quite clearly that I need to find strength when waiting on ‘the edge of my cliff ‘ knowing my love one is in partial remission and wondering how long it will last this time, perhaps looking for changes and signs that might mean this precious time is over. Hoping that I will once again find ‘ the power within ‘ to go forward with knowledge gained, to continue to confront and fight, to obtain the best possible care for my love one, for as long as I too, remain well.
So to all of you that have asked these questions, I choose to turn always from the edge of the cliff and walk into the wind, I will put a smile on my face daily, even when it hurts, with the knowledge I continue to learn, I will stand close to Hamada and help him to make good choices and I will face this ‘beast’ straight on.

All Rights Reserved @ 2008

The Power Within can be purchased from:

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

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