Category — carers support article

This week I received two very lovely comments regarding my poems, both in the same vein informing me how much folk enjoy them and how they helped them when grieving or in pain. Yes of course I receive daily comments, it would be unusual if you wrote a blog and never heard from anyone but sometimes the wording of these comments propel you forward to keep trying to perfect the one perfect verse. I am supremely pleased when anyone leaves a comment, just to imagine someone  taking time from their busy schedule to bother to email me saying how much they enjoyed my words, a phrase, or a particular poem delights me. Sometimes they may refer to my words having helped or brought healing tears at a point in the lives when sadness was choking or blocking their emotions. That upon reading the simple phrases written here, they say it was enough to know someone understood their own pain and could perhaps share it with them. Being sad or worried is a lonely road and often one you cannot continually share with your personal friends or family. Grief affects us all at some time in our lives and to different degrees  but I yearn to understand how some of us survive while others do not.

Unless you have been or are a Carer, it is often difficult to understand the daily stress of following harsh schedules and the responsibilities for another person’s life. So often this comes upon you suddenly and it is difficult to absorb all that appears before you. If you have no nursing experience you are confronted with serious decisions to help your partner to make regarding the right path to take with medical matters plus the emotional side too; often with no outlet for your own feelings, which hover near the surface daily. My choice was to write down my daily feelings and in my simple words I found a voice that started privately but ended up world-wide! I will try to continue with my ‘poems of love’ after reading these two rather special comments this week asking me to do so.  Blessings and thanks dear friends.

On another little subject that seems to be most difficult at this time of the year for the newly bereaved is the putting- up of Christmas decorations. Often these have great sentimental memories attached to them and are often collected together over the years if you have been together for a long time. I have talked of this recently with dear friends on-line and through social networks. Folk who are struggling even to get a few pieces out of boxes for the festive season. Me too I’m afraid. Really I feel it depends whether you have grandchildren visiting or not. Last year when very newly bereaved I made a huge effort to do all the ‘normal things’ especially for my Grandson and family. I found it most difficult but he had lost his beloved Grandpa only the month before and I wanted all to be as it was in previous years when he visited. As if it could possibly be but I am sure you understand. I wanted him to think nothing else had changed too much. My feelings if you live alone now, that perhaps changing things a little can help. It’s painful when so much is going on around you, Christmas displays and festive music in all the shops makes it difficult to function without sadness as it is. So instead of having your normal decorations, perhaps having a small arrangement of twinkling branches maybe flowers instead of the tradition tree if that is what you used to share with your special person. Change things a little. Perhaps a decorated photo of your loved one with gorgeous scented candles that can be lit when the mood feels right for you, would be better for your heart.

When Hamada was very ill he would love to look at the Christmas lights even more than before when he was busy, he would watch as I decorated the tree with little suggestions here and there.  The following poem written in 2008 tells about that and is shown below. Have a joyous Christmas my dear friends with all your good memories, as precious as the love you will always have for your special person.

In Christmas Lights.

Sharp and crisp as snowy nights

crystal clear in prism lights,

gentle orbs that sparkle bright

shining are your eyes tonight.

Reflected jewels of liquid amber

like dripping rich fondant creams,

chocolate in the deepest hue,

I bow my head to look at you

Eyes that hold this strangeness well

in candlelight they watch and drink

forgotten words, much time to think.

A bitter pill that’s hard for you,

as fairy lights come into view,

white and gold’s, red and greens,

you simply watch in reverent scene,

reflections in those honest eyes

of baubles and of Christmas time.

In Christmas lights my poems for you

expressed in love, a poignant view…

All Rights Reserved: 2008

I felt it appropriate on this first anniversary to post again two poems written around this time last year. The first, the simple poem “This Rollercoaster Life” was written when I knew and needed to accept that there was no more that could be done for Hamada or rather that there was no more medical intervention that our dearest Hamada could possibly have managed or that he wanted done. Although we still kept hope alive really apart from the love and tender care I could possibly achieve during his final days, I knew I had to accept that this was the time to stop fighting to keep him with us and pass on my care to the Almighty.  The second poem was written shortly after losing  Hamada and deals with the acute and painful feelings of this time. Letting go with dignity is hard when all you want to do is scream aloud with the painful sadness you feel. I have made it through this first year with much help from my dear family, very close friends and my MM friends worldwide. I thank them from the bottom of my heart for their love and patience but mostly I chose to grieve in private, apart from a few rants on here or when hearing a favourite song or piece of music that we both loved, caught me unaware. I may place a smile on my face everyday but my heart tells a different story.This man was much to miss! 

“Hamada’s story” is still and will remain on http://www.susiehemingway.blogspot.com  It is in reverse order for the new friends who I know come here from other sites to  read about MM, ending with his final days and covering more than four years. All aspects of emotion in the form of poems and many entries on caring and loving someone deeply as we both came to terms with the disease that is Multiple Myeloma.

Today and always I salute this special man: “I miss you dearest one as the sun comes up everyday and the moon appears at night, and as private as my tears fall, I miss you with every breath I take”

“This Rollercoaster Life” – 24 October 2010.

As swooping as the Rollercoaster

my heart hangs in fearful suspended news

that fills these ‘purple days’.

Days that bring shattered dreams,

only the strongest mind can hold.

My laughter becomes an echo that teeters on the edge

as I snap and break at disclosures strewn around.

My heart bleeds to dissolve this anger

which knows no bounds and as unruly as my mind.

Soaring high into this shimmering mosaic sky,

I hang on like a child that screams into the wind,

as these punishing swoops, turn into views as

fragile and as consuming as this Rollercoaster life.

All Rights Reserved:  October 2010.

“Let Me Not”  – 2 December 2010.

Let me not falter dear Lord.

Let me not fall at this final hurdle.

Guide me now to complete this task.

Let me not plaintively wail and scream as my heart doth now.

Allow me to show dignity that he always showed.

Let me not stand beneath the stars and scream his name aloud.

Let me remember this day, as we honour him.

Grant me the courage that he always showed.

Let me not go down on my bended knees and shout at the sky,

And implore you to return him to me.

Let me not fall at this final hurdle.

Give me the strength Oh Lord not to fail,

with this final task…

All Rights Reserved: November 2010

"Poetry is the opening and closing of a door,
leaving those who look through to guess about
what is seen during a moment" Carl Sandburg

God Bless Hamada.

As this month embraces Autumn I recall the September of last year  and the wretched struggles of that time. I suppose in retrospect this backward view, this sorrowful indulgence, is something that those bereaved need to do. A kind of  summing up as you approach  the first anniversary without your special person. It is not maudlin or mawkishly sentimental, far from it. It is for me necessary for shall we say, the organization of the mind.

In the early months of loss, when so numb the years of caring seemed like a bad dream. I could not breathe without pain through the sorrow and  I would have turned back the pages of the book to have him back with me in an instant. Of course never to see again  the horrors of this disease or  the damage it inflicted on this gentle wise  man or for him to suffer on and on but just to hear his voice calling my name or to see his eyes light up when I entered his room.

I was not the only one amongst our friends to suffer loss that year. MM took many of our newly made friends in 2010.  Friends made at the hospital, diagnosed at the same time and internet friends made out of a need to follow together as Carers. We used our common knowledge, clung together in an effort to help, support and glean information fr0m each other when we could. We became a strong body and positive in our efforts to champion, protect and help.

For the first few months of MM although I clearly knew the facts but because of our strong love, I believed we could beat this disease and although I saw and knew well the terrible changes overcoming Hamada, I continued with hope until the end.It goes without saying that this period of my life, the immense shock at diagnosis, the daily struggles, doing my best to help was and has  been without doubt  the most difficult period of my life but we made it to the end with peace and dignity and you will too my dear friends, the many of you who are still fighting for your love ones. Obtaining the best care you can for them and guiding them daily, to achieve a good quality of life from this a most difficult disease and the saddest period of your life.

Together  with love and tenderness these days become supremely special and will stay eternally in your memory.  It’s really all we ever want is it not, to be loved and well cared for in our final hours.

As Hamada’s first anniversary approaches, I have decided not to write here again about his ‘journey’ unless asked for advice or information regarding caring with Multiple Myeloma. I hope to move on to other subjects  but I will of course follow my friends blogs, checking in on them from time to time to see how they are doing.

I think my dear one should be allowed to rest in peace now. My intentions are to take time to get on with the years left to me. To enjoy each God given day to the best of my ability and to embrace new joys that have presented themselves. It would after all be just what Hamada would have wanted.

*“There comes a time to remind yourself of your reasons for living. You have a future worth enduring and you deserve to find a renewed sense of purpose and pleasure in your life”

*From Grief Therapy by Karen Katafiasz.

Withdraw and surrender

or restore and live?

Painfully utter or sing joyously aloud.

Or impair fatally to ruin

all that comes to you.

The choice is yours.

Enhance the beauty of your life like a twilight cirrus streaked sky.

Illuminate your life in daily joys.

For joys there are!

Live an anguished life in mask of grief?

Or find solace in this diorama of

changing colour and direction.

Sink or swim?

Renounce, abandon,

or repair and mend?

The choice is yours.

Enter that empty void of senselessness?

Or find that certain solace.

Swim to the top, swim to the top,

do not succumb to misery.

Lift yourself from daily pain.

Fight against this hanging pendent of rage

you wear so well.

Leave behind that ache

as heavy as a dying  bloom.

Live your life…

And find that certain solace.

Poem inspired  by a comment from Lileng.

Photo courtesy of Ellie Robson.

Copyright 2011 Susie Hemingway.

.

What will it say in years to come? What will it tell the folks who pass by and glance, reading the words I’ve chosen. How I wanted to tell a story on this tablet of stone. How I wanted to place so many words. Words that would have filled this oblong of granite. Something much more, about the special man who rests here.

The rules are strict for the Diocese of Lincoln: Monuments should be of natural stone (with no reflecting finish) and a list of recommended stones is given to help with choice. The stone must not be polished, nor finished in any way to give the effect of polished stone. I agree with all this, keeping the beauty of this peaceful resting place is so important and garish shiny headstones would look out of keeping, here amongst the grey.

Inscriptions should be simple, reverent and with an appropriate epitaph but how difficult in a few words, when I wanted to say so much about the wise, kind and caring man who lies here.

I could have added angels to keep you company, or lilies in ornate decorative splendour carved across the stone. I could have added copious words in gilt, flowery sentiments of love. I wanted to say so much. For in my heart I desired the biggest and the most elaborate memorial stone of them all. A pharaohs tomb. For in my world you were the very best of them all.

Instead I knew you would not have liked that. For you were most humble, for you were too elegant for showy symbols. You would have wished to mingle unnoticed amongst the others, although you never went unnoticed.

Just a simple plain stone you said, like most of the others in this quiet lovely place of rest. Just my name you said, I will be proud to rest here you told me.

Keep it simple, keep it simple echoed in my ears but my heart wanted so much more, as I stood before the selection of traditional stones. Let it be elegant for this most elegant of men.

I made my choice, only once biting the inside of my mouth to stem the tears as I realized this would be the last task I would perform for dear Hamada.

So we shall see in early September when we stand together once again to honour this beloved man. I believe I’ve chosen the simple words well. Hamada would be pleased.

It is right and fitting.

Taking little steps and turning the pages of a new life is often difficult. A life that will be so different for you without the one you love. As I knew long before Hamada died, that he would not survive MM. We discussed a plan that would help sustain me through this bereaved time. Taking a little holiday as soon as I felt well enough to do so was something Hamada in his wisdom had suggested. I have always wanted to travel more, there are so many places yet to see and certainly not so many years as there once was to do this in! I would make a gentle start with a small trip as part of my healing process. We never dwelled on him dying but often mentioned little things that I remember now that were  all said to help me. Now at his six month anniversary I have achieved my first trip away and how very lovely it was too.

I selected something easy and not far away, Denia in Spain.  A place I had first visited back in 1968. When as a young woman I had stayed as a guest in a beautiful villa “Mar-Jon” close to the base of Mount Montgo, the mountain that sits as a watchful eye over this pretty seaside town.

Now of course packed to the gills with villas in every available space but still just as charming. I loved it then and always thought I would  return one day. Selecting a good hotel safe for single travellers with all the comforts of home was fun to do. Marvellous food, loads of good fish and delicious vegetables and desserts and with people my age and older, all looking for a genteel time, of course with fun and laughter but aimed at comfort and ease. It was delightful to listen to stirring new conversations and make new friends among the well travelled there. I was surprised to know that some had been returning to this part of Spain for many years, singles and couples all very happy with the clean and efficiently run hotel with its excellent bar and enjoyable evening music. An attractive place to unwind after a good dinner and a  day of walking and swimming.

Denia in Spain is still a lovely town retaining much of its authentic Spanish charm. The picturesque marina that I remembered as a small place back in the 60’s, is set beneath the pretty old Castle; it had stayed long in my memory. Now a fabulous place full of luxury yachts of opulence, marvellous paved walk-ways and wonderful cafes and tapas bars with upstairs terraces for fabulous views of the bay. I spent most of my days walking in the warm sunshine, admiring the sleek ‘sun seekers’ and the huge ‘gin palaces’ shining and pristine with gleaming chrome, their smooth lines of design resting gently upon the bright blue of the Mediterranean sea and so ready for the ocean.

I stopped each morning for marvellous Americano coffees to take in the beautiful views, then walked some more in the warmth of the Mediterranean sunshine. My shoulders  relaxed as I drunk in the beautiful vistas and for the first time in many months not – and I know this sounds so selfish – having to worry about pushing a wheelchair or almost carrying my dear Hamada. I could have walked there forever with the gentle sun warming my soul.

A weekly market in Denia was a bustling delight, reminding me in some ways of the colourful souks of the middle east I purchased from a grand selection, two rather nice sun-suits for further holidays. The sweet Spanish lady insisting I tried them on over my t-shirt!  Still she was right they fitted perfectly and would have still been cheap at twice the price. Bright and gaudy stalls covering a large area sold all manner of things and certainly worth time spent there. The level walk to the town centre along pretty streets with the red white and pink of the bougainvillea covering pretty courtyards in perfect weather was a delight.

Slowly I could feel the stress and strains of the past five years release from my body. I thought of  Hamada often, as I embraced Denia and of my new life as a single person now. Enjoying this pretty mostly unspoilt town that has retained much of  its Spanish charm with many places to stop for a cooling drink or little tapas. I enjoyed the best deep fried calamari’s (squid) I have ever tasted!

Sitting under the vine leaves of a centre cafe complete with fountain and pretty shops to view. I thought back on the struggles of  many months past, knowing that I had done my best in everyway for my precious man and that he would have been so happy for me as I embraced a new life. There will be many sad times for me of that I am sure. For indeed he was my soul-mate but I am taking little steps and turning the pages slowly of this ‘new’ life…  I am a strong woman and I have “The Power Within” to survive  -Blessings  dear friends.

It seems forever since I looked into those eyes,  yet the memory of your face is as clear as the picture below. How can six months have past without you by my side? Sleep well beloved.

I see you in my dreams and know you dream of me,  just as you always promised – from the ‘box of secrets’

Sleep well beloved…

Six Months Anniversary.

On the day of  Hamada’s Funeral my very dear Sister Sally – who is really a cousin but we call her sister because we all grew-up very closely together, and we love her so – presented me with this very beautiful framed photo of Hamada with a verse underneath. How wise she was at the time and although her so sad eyes showed her painful feelings for me and for the loss of  our dear Hamada, she knew I would take great comfort when reading this verse after everyone had left and when alone. 

During the past five months I have read this verse daily and as Sally  had rightly thought, it has brought much comfort to me and the wise words contain therein have indeed helped my heart to heal some.

As I embark on new ventures this week, with my first holiday alone since Hamada died. I feel it would be good to share these words with my other friends who read here and are also sadly bereaved.

Blessings to you all dear friends. I pray that each day will bring light and peace and many unexpected blessings, as you make your way with your love tucked safely in your heart, to continue with a different life. Here are the words that have helped me:

“You can shed tears that he has gone, or you can smile because he has lived.

You can close your eyes and pray that he’ll come back, or you can open your eyes and see all that he’s left.

Your heart can be empty because you can’t see him, or you can be full of  the love you shared.

You can turn your back on tomorrow and live for yesterday. You can remember him and only that he’s gone, or you can cherish his memory and let it live on.

You can cry and close your mind, and be empty and turn your back, or you can do what he would want -

Smile, open your eyes , love and go on.”

I know Hamada would have wanted this – for me to smile, open my eyes, love and go on…

Although my days are painful I am making small beginnings towards reshaping my life without my loved one. It is good for me to write once more and I have started in a small way. The snow is still heavy on our lanes and now with even more predicted the temperatures  are falling sharply once  more. It feels as if it has been a long Winter already, as my thoughts turn to my first Christmas in more than thirty years without my special one. Today I decorated the Christmas tree, it would have been so easy to ignore but with my family arriving at this special time, what would our dear Grandson think if there was no tree ?  Grandpa loved the twinkling lights and would always admire gracefully the work involved. I can see them both together, looking at all the little ornaments collected over the years. My heart ached for Hamada today as I completed this task.

I walked in the snow and laid a perfect cream rose on Hamada’s grave this week. I know I am still shocked and numb but accepting and peaceful that I did all that could possibly be done to ease and comfort him during these past years. The pattern of each persons grief is unique to them, mine has been shaped by the particular relationship we had. All that was ever needed to be said, was said.

And so:  I don’t really believe that you ever “get over” such a significant loss in your life, grieving is among the most sacred thing you will ever do. This quiet abiding feeling is I feel a connection to my precious loved one.  I don’t really ever wish to lose it, my memory of him and our time together will always be maintained as I embark on a different chapter of my life.

So I decorated the tree observing our tradition with a simple ceremony that eased my pain.I can see Hamada’s lovely smile and his delight at this years result. “Missing you Habibi”

“I wish all my readers far and wide a very Happy Holiday and much  joy and peace to you all”

After blood tests done yesterday at Lincoln County Hospital the results show that Hamada’s platelet level is extremely low at 16. So this morning he will have a further blood test to check antibodies(I believe) and then his specially ordered Platelets will come from Sheffield and he will receive these at the Medical Day Unit at Lincoln. A simply wonderful team there!
This transfusion will hopefully help make him more comfortable and halt the bleeding that can be seen in hundreds of little blood spots under the skin. Many on his face and even more on his arms and lower trunk. He will be at the hospital for at least three hours but this I hope will save a weekend stay. Many thanks to our Jenny who has been assisting with another strong arm, bless you Jenny, what would I do without you X

Addendum: Hamada spent six hours getting transfusions today – on arriving his HB had dropped to 8 and his Platelets only 10  He is back home now and feeling somewhat better

As Hamada approaches three years since his Stem Cell Transplant which undoubtedly saved his life, we are eternally grateful for the extra years he has obtained from this procedure. So many of us debate about which way treatment for Multiple Myeloma should evolve. What drugs to start as front line treatment? what choices of drugs to continue with, in an effort to help and support. Even with the risks that most carry, for the many problems that for nearly all MM patients, do arrive at some time or another.

Should it be the smallest amount possible? Should you be trying to support and protect with many of these not always proven drugs as Hamada has done and continues to do, or should you go it alone?

Then what about the problems that many of these drugs can bring to someone who is now so vulnerable. What is the right course of action to take? Don’t we all ask this question at the beginning of treatment. It seems there is such a fine line to balance the needs of these drugs and the damage that some may do. It is indeed a complex issue and one which must be constantly monitored by the specialists and also through the watchful eyes of the caregiver. How important to note these sometimes subtle changes in a patient, to try to assist your consultant with good clear voicing and so one day all knowledge gained, will go forward to finding a cure for this most complex and difficult of diseases.

Ideas have changed even in the four+years that we have been on this journey. We have listened and read of new transplant procedures coming to the fore in parts of America, where they are now very hopeful and talk of a cure. Still, looking back on the past four years of treatment for Hamada, there was really no choice but to proceed to SCT as quickly as possible. His kidneys were failing, he had succumbed to two bouts of pneumonia, one so severe that his body was shutting down and we knew this was really his only chance to gain extra time. Hamada’s spine was already damaged and he was in agonising pain which thank goodness was helped with radiation. As soon as he recovered from this, he fought hard to reduced the Para Protein as quickly as possible and to get to start his ‘new life’.

I have read so much about MM over this past four years and four months, learning as much as any lay person can grasp from many different areas and from the voices of many other sufferers worldwide. I have been grateful for all the knowledge gained from good “list serves” such as ACOR and from fellow sufferers of MM and carers alike.Their blogs have given me a good insight into how MM affects/unfolds in so many very different ways for each patient. For sure, no one with MM is the same, treatments will be different for all. Some do better than others as one type of chemotherapy seems to work for one person but not for another. Many appear to remain in remission or continue with very low PP for many years. How different we all are.

I am a poet not a medical person, so it has been the biggest learning curve of my life. Still my thoughts right at the beginning of this journey and also now, were that if I could record and write just the way our personal journey unfolded, using my words in the form I know of poetry. Just telling of my feelings of these past years may help other carers to know of the fears, sadness, the coming to terms with, and all that a Carer feels, that invade thoughts daily in an effort to try to help loved ones. Perhaps this blog may help others who are just starting their journey along the same path, for others it will not, unique as we all are.

For carers who read my simple poems will know, that each tells a story of that particular time in this journey, just as the changing seasons tell us what is happening daily. To convey my feelings in this fashion, also helps me to remember, just how I felt at the dates show on each poem.

Perhaps for some this is a strange form to write a diary of events, but MM is a complex illness as we all are and it is perfect for me, thus enabling me to remember every minute of it all and to free the emotions that often fill this time.

Hamada is continuing well I feel with Revlimid, now on his second course, not having any side effects that he cannot manage. Of course he is more than weary, managing his maintenance drugs daily and the dreaded 40mg of Dex weekly along with Revlimid, always grateful for these past extra three years, which many times prior to the SCT we never thought would be possible. I am aware of course that this is not always the way to proceed and for some if they are otherwise well and not with compromised kidneys or bone lesions, will not choose SCT until all other avenues have been exhausted.

There is no right or wrong way that I can see, only that each person should be treated in their own unique way, as symptoms present themselves and by good valuation of bloods and careful monitoring of precious bones, not from some ‘set out’ protocol. Still what do I really know? only that dear Hamada is still alive after a very poor prognosis and doing dare I say ‘fairly well’. 

Stay well all who read this post and continue to make good choices as I continue to record this journey in ‘poems of love’

All Rights Reserved Sept 2010

As soft as the evening breeze

that trembles through the tallest trees

as meditative as your words allow,

entwined and tangled in these Summer days.

The crystal clarity in your eyes

tells more in a dear face of courage,

than the gentleness of your silence.

Not so much now a belligerent waging war

nor a stricken fight,

just a gentle silence that goes on into the night.

Words are difficult for you to find

It does not matter  for I don’t mind,

the gentleness of your silence is far more

than feckless words that blow in the Summer wind.

The brushstrokes of our life unfold clearly

as you focus daily to capture strength,

this Summer of endless joys

nothing more is needed,

no more

than the gentleness of your silence…

All Rights Reserved 2010

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