A Power Within

Tag: Multiple myeloma Page 1 of 3

I Missed You.

                             

I missed you, when the heated rhythm of Salsa, that feels so like chillies when they touch your tongue drifted across the dance floor,
I missed you as this enticing music reached my jewelled pinned ears.
Where were you? When the luscious sounds of Sax blues, caught my needy toes so carefully encased in high dancing shoes.
Where were those slim sun touched hands that would reach to twirl me to the dance floor.
Where was the graceful dancer, whose gentle persuasion could spin me like a whirlpool, making me turn and sway to the sounds of Latin beats and Bluesy tones.
Tell me, where were those magical eyes, those sparkling rays of light, that always laughed with me.
Where was that smile, those breathy movements on the dance floor, those feet that could glide and coax the dancer from my soul.
How my heart wants to dance with you once more, instead of standing alone when the music calls to me.
I watched the others spin and whirl but my arms were empty, sadness for your charms that made me feel like sixteen again.
I was never a wallflower but she has found me now, where were you when the deliciously heated sound of Salsa reached my ears,
where were you?

 

The Box Of Secrets – Poems of Love.

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“The Box Of Secrets” Poems and Photos available in soft-back and hardback styles, all to be found on www.blurb.co.uk. Under poetry. Or http://www.blurb.com/b/7455812-the-box-of-secrets  This book is sold via Blurb and not from this page.

The Box Of Secrets.

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The Box Of Secrets

Introducing my new glossy coffee-table book full of ”Poems of Love” and gorgeous photos. You can find it over at www.blurb.com in the bookshop under poetry. In larger print for ‘tired’ eyes.img_3177

First Year Anniversary of Hamada’s Death.

 

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! 

Manu and Grandpa - Stickers 2007Manu and Grandpa in bed - laughing 2007

“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.

“I recall this time”- Carers Support Article.

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.

Sorrow Is Better Than Fear – A Carers View by Susie.

 
“Sorrow is better than fear…
fear is a journey, a terrible journey,
but sorrow is at least an arriving.”

Alan Paton.

Looking back on the fifty- five months of  caring  for Hamada and although the sadness is an utterly desolate pit to try to escape from. I am inclined to agree with the words above. From the time of diagnosis although very hard to take onboard, my first and paramount thought was how can I make this time, this journey for Hamada the best it can be. Most  importantly especially at the end.

At times this consumed me but certainly not all the time. I was so busy fighting for the best treatment for him and learning all I could about the particular disease of Multiple Myeloma but often in the early hours of the morning when sleep was over and my mind was as sharp as it can be these days. I worried that perhaps the end would not be as I hoped for him.

I had talked to Hamada as the months went by about what he wanted most when the time came. We did not dwell on these morbid thoughts and often I denied positively that this time was not on the horizon, or in the next few months as was first thought. Often declaring  sincerely that he would probably outlive me.

I always gave Hamada great hope that this would not be for many years to come and certainly for a vast number  of MM sufferers this is now so. Hamada was a quietly wise man but he  had many complications that I knew were insurmountable and so I think did he.  We never gave way to hopelessness and only considered losing the battle on rare occasions. Never dwelling, just getting on with treatments and trying to make each day important  and special. With many goals to reach along the way.

I knew from these occasional discussions that he so wanted to be in our little home here in the country. He wanted to die looking at the sky in the comfort of his own bed, listening to his favourite songs and with me at his side. Thank goodness this was so.

So often as my family will testify, I worried(feared) that Hamada would be whisked away to hospital and not be where his heart desired to be ( hard one this). Very often by nature we panic when the time comes – wishing to help as much as possible to the end- never thinking that nothing more can be done, especially if it has been a long fight and many battles won.  A hard place to arrive at in the Carers mind but so incredibly important and must be found. The time to know when it is ok to stop.

 And so yes, sorrow although so hard is better than fear. For fear is a dreadful journey, I can attest to that.

23rd Jan 2011 – 2months since Hamada died.

A Snow Covered Village In December.

Hamada's flowers Dec 6th 2010

AS the snow lay heavily across this perfect land. Temperatures plummeted to an all time low. Lanes were covered thickly with snow and packed ice. Branches weighed heavily with icicles as though they wept their perfect tears along with our sorrow. Important paths were cleared by a team of willing men as brilliant sunshine played and danced on crystal ‘water-diamonds’ studded on pasture lands.

We stood on that first day to receive this special man. Tightly together, our breath pluming feather like, into the crisp harsh air. All his dear ones so close, each with their own special memories of  this much loved, dignified and courageous man.

The first evening brought many to pay respects, travelling the length of the UK  to this beautiful little place on Gods earth. Staying in guests cottages on farms and in nearby bed and breakfasts houses. Filling with love as they arrived, the empty space in my heart. Each bringing their quiet thoughts and memories along to ‘celebrate’ this good mans life.  We chatted and yes, we laughed into the evening , talking of fun times together just as if this beloved man was still sitting with us. We spoke of special dates, birthday, holidays, fun times at the beach, love filled that evening reception. The cosy warm rooms with food aplenty also warmed our hearts .

The day arrived for our final goodbyes.  Limousines were prepared, large shiny ‘ rooks of travel’  deliciously comfortable, mine  with a thoughtful small crystal glass of  brandy resting in holder to ward off the bitter cold. Nothing had been missed… nothing left to chance…

My mind seemed detached and yet clear ‘picture memories’ that will remain forever with me began to etched on my mind. My dearest daughter-in law thoughtfully bringing to my bedroom a soft linen handkerchief, the hugs of my two stalwart sons who seemed to be taking care of everything. I remember clearly a vision of my youngest son Jo bending to adjust  tenderly the tie of my Grandson Manu, resplendent in perfect little black suit, his sad dear  face and the hugs he gave me so often during the day, will never leave my heart. The Bells tolled across the village, calling all to this resting place.

The oh! so slow drive, carefully negotiated on ice covered lanes, the congregation filling the church, the prayers, the many readings, the just beautiful strains of  chosen music and hymns.  The overwhelming smell of  lilies and eucalyptus covering the casket,  brought tears to my eyes.

The guidance of our dear Reverend Avril, her clear voice fully in charge of proceedings but tear- filled eyes gave away this confident stance. The Stunning photo of Hamada, that our dear niece Ellie had skilfully had enlarged and had  propped against a tall glass vase of  more triumphant  white lilies for all to be able to see,our handsome man.

The splashes of mauve coloured scarves and beautiful arrangements of flowers lovingly prepared with special care caught my eye. The pink cheeks of my sisters who’s eyes showed such deep sorrow. Their dear husbands grieving for the loss of their much loved brother.

My body shook with grief as I heard the first rendering, the beautiful  Hymn “Abide With Me” the  clear delightful voice of Katherine Jenkins filling the air.Two strong hands from either side covered mine, it was enough.

Tears fell to the strains of “Ai giocco addio” from Romeo and Juliet the powerful voice of Luciano Pavorotti echoing against  the strong stone walls of this tiny ancient place, such a favourite of ours and played so often in our home.

The pride I felt at the words of  the five tributes, each perfectly clear and delivered with such compassion, each telling their own poignant story.

The words of the Eulogy read in perfect tones by my eldest Son Matt, containing only words that God could have guided his hand to write.  Telling  the most perfectly unique and complete story of our beloved Hamada. “ The days run away like wild horses over the hills”   continued to tell so much of  this dear mans life and then to finish his reading  with Khalil Gibran “The Springtime Of Love”  a poem found marked in one of  Hamada’s books. I shall keep Matt’s wonderful words safely by me for the rest of my days, they were so beautiful.

The village elder speaking in reply, with such love, support and total tenderness taking our breath away with his sincerity, and perfectly clear and powerful words of kindness his skilful reading of the ancient Psalm 23 .

The tears from everyone, as we gathered closely together and all sang along with Elton John “ Can You Feel The Love Tonight”

Some so moved that the words could not come, as the love surrounded and filled this tiny place. My dear girl friend’s face so wet, with such huge tears of sadness.

We sat in silence as Ray Lamontagne’s  beautiful guitar rift “ Truly, Madly, Deeply” gently filled our hearts.

The final:  Ray Lamontagne’s“ All The Wild Horses” completed this long farewell as everyone stood in honour.

SO many things I will remember from that God given day that allowed us to say our goodbyes,  to a perfect and much love gentleman. Youngest son Jo reciting a “Surah” in Arabic, his strong deep voice so much like his Father’s, clear in the bitter sun-filled air.

The family standing in resplendent smartness on crisp white snow as they threw their white roses of peace the long way down,  then the men – including our beloved Grandson – with hands full of dust  “dust to dust, ashes to ashes” never have I felt such love, love that surrounded these two days. Days that will never ever fade from my memory.

“May God bless you my Habibi and grant unto you eternal peace forever Amen”.

 

Photo of Lilies,cream roses,eucalyptus and banana leaves taken by Janey Johnson with thanks.

All Rights Reserved.

Gone To Live With God.

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My beloved Hamada quietly and peacefully and with great dignity left us today to go home to be with God.

“Dear Universe a new angel has joined. He is handsome, caring, loving and a great symbol of courage and strength. His wings spread across the globe sincerely and lovingly touching the lives of many. His journey on earth has been an inspiration of courage to us all”

 

More messages of condolence on www.susiehemingway.blogspot.com  and shown also in comments here.

The Start Of The Final Journey

23 November,

Just a short update for those who are awaiting news of our dear Hamada, especially our family in Egypt. Hamada has started his final journey home to rest. Yesterday a wonderful nurse from the Macmillan support team came to visit at home and confirmed what I already knew. Hamada is slipping quietly to his resting place. He is no longer speaking or drinking he has a ‘rattle’ on his chest and his body is slowly shutting down. I have spent all of the night hours watching over him, catching small naps when I can.
The Doctor is to arrive shortly and will bring or prescribe all necessary drugs to administer by injections or patches for Hamada’s comfort now that he is not swallowing well.
For the nurses who I know read this web-blog: Hamada did not pass urine for 24 hours, but today some, which I believe shows his kidneys have not completely shut down yet. It is a much better way for him to ‘pass’ if they do.
As our Jo said, perhaps this is our last miracle for this journey to end peacefully this way and I pray with all my heart for this to be for my beloved Warrior. It is also possible that he will stay in this ‘dream like’ state for a few more days yet although I do not believe so, he is extremely weak now.
My Sister Jenny and brother-in-law Ian, lovingly came this morning to help me tenderly bathe him and to change linens and to make Hamada smell just like I know he loves, all friends will know how fussy Hamada is with his love of good cologne. He is peaceful and in no pain, dearly sweet and surrounded with much love

Night Vigil

Hamada has spoken very little during the last two days, managing only to smile and greet the family who have all been here at "Hemingway" this weekend. I know by his smiles that he has enjoyed so much, seeing them all during this bittersweet weekend.

 

Jo gave his father a wonderful shave, something that I was not managing to do very well!  It was a wonderful time of family closeness. I received some of the best much needed hugs, which have given me more courage to continue after this long worrying week.

 

After everyone had left I managed to get Hamada to his favourite chair in the sitting room during the early evening, thus giving me time to put fresh linens on his bed. He was not speaking at all during this time not eating anything, just dozing on and off. During the middle of the evening he became more agitated and seemed a little distressed so I helped him back to the safety of his bed.
As I settled him down for the night he spoke, his voice clear for the first time in two days. He was tearful and told me that he was very tired now but needed to say something, struggling to find the words he said that he did not think he could continue any further, almost as if he was asking for permission to go. I let him know gently that it was now time for him to rest and for him not to be concerned about anything but sleeping now. He spoke about his love for me and his worries of leaving me and I reassured him that I would be fine, his beautiful words brought a few gentle tears to us both. I laid my face close to his as he settled into a very calm deep sleep and so a time of loving observation and a night vigil for me began. It is now 6am and Hamada is still sleeping, his breathing just a gentle rhythm in the quietness of the house and as I go for my shower I wonder what this new day will bring and is it time now?

Such A Difficult Time.

 

The terrible headache which has been with Hamada for a week now, has become too much for him to bear. Yesterday he was prescribed control release Morphine and also liquid morphine for extra support. As we are now back with our own local GP, he is of the opinion that this headache is being caused by the lowering of kidney function even further. The kidneys will have course, taken a great strain during the recent blood and platelet transfusions even though great care was taken to transfuse really slowly ( 6 Hours ). Hamada has been in such great pain from this headache which cannot be allow to continue, hence the Morphine being started yesterday. All the family are here this weekend which is a great support. So much joy they all bring with them and they have been quietly chatting for short times with Hamada and the delight shows on his dear face as he enjoys seeing them so much. We are being spoilt as we have both had recent birthdays, wonderful days all together…just being…

“Changes” – November 2010

Girl walking out to Sea - Nov 2010

When I started this blog more than four years ago I promised always to tell how it is for a Carer of someone with MM. It was important for me that my poems conveyed a little story of the days that unfolded on this journey. Sometimes the truth of my feelings may hurt more than at other times. I try to think of other MM sufferers, I truly do. Then of course those that may be hurt by my thoughts here, will not subscribe. So I continue through these most difficult days. The following  verses describe my feelings during a very lovely birthday weekend for Hamada. Our son Jo spent a special time with his Father, we had a celebratory meal together and all in all it was a perfect weekend. Except for one thing although I suppose I have always seen Hamada through ‘rose tinted glasses’. I could now see clearly what I suppose others can see and have notice for some time, visual changes to my dear man’s face.

“Changes”

 

For I am not blind I see now
clearly as these given days allow,
For I am not stupid for thinking more,
willing you to stay.
This blighted weakness pursues you
like some demon spirit
whom I curse with my very being!

 

The once thought improbable
is happening darling man,
I cannot close my eyes
to forget these brown eyes fading,
I cannot shut my mind for all I need
is to see your smile.

 

These brutal changes tear at your resistance
this beloved face is changing
dissolving and vanishing from view,
but never from my heart.
I can at last, see this Beast Within.

 

This wicked Beast who will not leave you
However hard we try.
I am not blind – for I can see ,
this despair at Changes…

 

So many changes…

 

 

All Rights Reserved November 2010

Time For A Top Up.

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

Autumn Days.

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Beautiful mellow Autumn days spent quietly, enjoying precious time with good food and sweet music. Nothing terribly important to report. We are to meet the nice Macmillan Nurse who phoned this week, later this month. Hamada does not  really need assistance yet from this lovely team of nurses and I hope it will be a long time before he does but as they say, it will be nice to have a visit, so the nurse can get to know him. I will have the kettle on, ready for a cuppa together.  This will also give me a moment to ask for any advice.

We are planning to visit Haematology on the 11th to get CBC’s done, in future I will be able to read the kidney results on-line and this has now been set-up. So a future plan seems to be taking place and in the meantime we are looking forward to Hamada’s birthday at the weekend and a small celebration, a planned meal at  the village pub which he usually enjoys very much.  The photos here are of “Hemingway” It is a beautiful Autumn here in this little Village in the month of November.

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