~ Poems of Love ~

The following poems have been written by me, for my husband Hamada, who suffered from Multiple Myeloma [IgG Kappa] a cancer of the plasma cells, which are found in the bone marrow. After many months of chemotherapy, contracting pneumonia twice, once given only twelve hours to live and having three bad fractures to his spine and also showing in his Pelvis, he made it to four years seven months. The Multiple Myeloma attacked his Kidneys first showing at diagnosis in May 2006 leaving Hamada only a small percentage of kidney function. He never complained, using his most amazing smile even when I knew he had severe pain. Hamada underwent a Stem Cell Transplant using his own 'harvested stem cells' . During October 2007 he spent seventeen days in the "Centre For Clinical Haematology" at Nottingham City Hospital UK. where he achieved this transplant. We had a scare at six months after transplant, when told 'the beast was back' but subsequent tests showed a partial remission. Again in early 2009 it was confirmed that Hamada was out of remission He fought again during 2010 with newer chemo type drugs. First with Velcade and then with Revlimid but to no avail. His Kidneys were failing further and Hamada chose not to have dialysis. This blog contains poems and updates, written for Hamada, telling of our life together.
Now a beautiful book has been published, see http://www.susiehemingway.com/books/
showing Hamada's personal fight against Multiple Myeloma in the first fifty 'poems of love' written by me his wife. I hope you like these poems of love and also 'our story' dedicated to Hamada, who passed away peacefully at home on 23 November 2010 after a most courageous fight against Multiple Myeloma.

21 September, 2010

Three Years Of A New Life - A Carers View.


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 most 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 listserves 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.

8 comments:

feresaknit said...

I intend to follow and learn from your's and Hamada's myeloma journey for many, many years to come! :D

Noelle said...

God bless you and Hamada. :)

aslan said...

Get a great weekend with health and
happiness...

Steven L. Ritter said...

Good blog... Sometimes you just need to write your thoughts down. I'm really glad to hear Hamada's is doing well. Sounds like you are also doing well. It is a journey for all of us. I just wish that the road had better signs telling us which way to go and how fast. Keep on blogging... Praying...
Steven

Sandy said...

Your unique poems, Susie, offer a sometimes probing, always sensitive, and ever special view of this ravaging disease that has no mercy for its sufferers. Each carer and each MM-afflicted individual does have to find his or her own way, but your poetry is like a bobbing candle on this river of discovery, guiding those who care to see along their own way. Please continue to light this watery path...

Roobeedoo said...

Well said, Susuie. We all approach this myeloma "thing" from a different perspective - and yours is a poetic one. I adopt a far simpler "report the facts" approach because it works for me... and then distract myself from the whole business of health and disease by knitting and sewing. Your readers appreciate your insights and I know Hamada must be so proud! Keep up the good work, both of you!

Roobeedoo said...

Susie. Sorry - can't spell today!

Kristine said...

Once again I thank you for your beautiful, heartfelt thoughts and words.

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