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.â€
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 Habibiâ€
“I wish all my readers far and wide a very Happy Holiday and much joy and peace to you allâ€
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
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 4th Anniversary of Hamada’s diagnosis of Multiple Myeloma. May 2010.
Copyright @ Susie Hemingway 2010
Powered by WordPress & Theme by Anders Norén