Hamada and Susie at Recent Family Celebration.

Hamada attending a recent family celebration with courage and dignity, staying for three hours and enjoying an evening of laughter, fun, good music and wonderful food. What a complete star!

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.

My Thoughts Today.

My thoughts and prayers today are with Dianne and Vern West of Nevada USA. Vern who was diagnosed with MM at the same time as Hamada, has endured so much with courage and such great dignity.

We have supported each other along the way with this fight against the 'beast', through many trials and tribulations for both dear men during this past four + years. Dianne fighting every step of the way to obtain the very best care for her beloved husband with such support and so much love and goodness, while with courage and wise words supporting others like us along this journey.

Today Vern entered into hospice care and my heart goes out to them both, with love and hope that in the coming days they find the eternal peace that they so deserve.

Vern and Dianne visited England some time ago for their 30th Wedding Anniversary and so I post these photos taken yesterday at the highest point 'Red Hill' near my home; as I blew a prayer into the wind, to cross an ocean, in honour of them both.


addendum: Vern West passed away on the 22nd September 2010 "eternal rest give unto him Oh lord and let perpetual light shine upon him " His loving wife Dianne was by his side.

Views from Red Hill: Photo by Susie Hemingway.
All Rights Reserved 2010.

As Summer Fades - A Cancer Prayer.

As Summer fades and the air is filled with signs of Autumn.

As the leaves start their change in colour and their sprinkling fall;

the rhythm and flow of life continues its clever path.

This in-between state that suspends betwixt the seasons, is all my heart desires.

To call on the Gods to allow a stay with compassion,

cleverly keeping this season of harvest and life.

Protect and preserve these mere moments of joy and utter no anguished change for me,

as grateful diamonds of joy spill from my heart.

Take these vibrant days of colour with their smiles intact, allow for no fear,

for you have always been my brave one but you are more so now...

Do not snap and break this plan I ask,

keeping this Autumn complete and in my whispered prayers.

All Rights Reserved @ 2010

Photo from Susie Hemingway's Collection.

Further To The Post Of Yesterday.

Just the best news received today at Hamada's consultation at Lincoln. I felt he was doing well (see below) but to my surprise, the Para Protein results were through and a wonderful drop of 5 !! was recorded and is now at 16. All bloods have improved some. So with bated breath dare I say it looks like Revlimid is working it's magic! This was such a surprise to us, as we did not think we would get these results so soon. Hamada has had just one course of Revlimid so far.

I can hear him in the other room snoring as he has a little nap and if I peep I am sure there is a smile on his face, as there was on the consultant's today. How wonderful is this, such a long time since I have been able to write something positive and far too long since we have had any good news to report. What a warrior!!

Doing Well I Feel.

A short update to say that Hamada has now completed his first course of Revlimid and all seems to be progressing well. No need for additional Platelets which was rather a problem with Velcade, bloods counts are not too bad. We attend Lincoln''s Haematology again tomorrow for the weekly blood tests and then the completed months consultation. Important bloods from last week are shown below for those who follow such things.

Haemoglobin 10.9
Platelets 55
Neutrophils 4.99 ( big improvement here)
Hamada continues with all other maintenance drugs and now added daily aspirin also trice weekly Filgrastim and once weekly Aranesp.