~ 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.

11 September, 2008

On The Edge Of A Cliff - A Carers Perspective

Rather a lot of people have asked me " how do you keep cheerful " and " what keeps you strong when faced with such a change to your life"
So what is it that gives some the strength to keep fighting and staying strong in the face of adversity? What enables some Carers to give their best and their continuous support day after day, when for most of us, burying our head in the sand or turning to run would feel so much better. Well yes, difficult questions to answer I think. I know how different it is for all Carers, and of the problems that affect us all and no two people are the same or will have the same approach when confronted with devastating changes, not only to their love one but very often to their own lives. For me after the initial shock and my goodness what a dreadful shock it was, I spent many nights thinking of how I would find the strength to deal and do my best with, the awful changes that would befall us. Having only just retired and with both of us looking forward to a more relaxing time, I had hoped for some new adventures, lots of dancing perhaps and certainly a lot more travelling. Time for swimming, time for walking together.

When Hamada in May 2006 was rushed to Lincoln Hospital and then on to Leicester Hospital with sudden onset kidney failure, found after a routine blood test, I was in severe shock as anyone might be. After his first night in Leicester I returned home alone and immediately went to my PC to look for the causes of sudden kidney failure. I remember writing on a scrap of paper the three things that matched closely Hamada's condition, the second on my list being Multiple Myeloma. It was something at the time I knew very little about, I did know, it was not as yet a curable cancer. So when the next day, the Doctor with a rather grim face, came to tell us the results of the barrage of tests taken and the devastating news, I passed to him the small list that had been tucked in the palm of my hand asking " is it one of these " and in my mind thinking, don't let it be the second one, but it was! I think from that very moment on I decided that for me, the only way to confront this crisis was face on, asking and learning as much as I could every step of the way, I was standing on the edge of a cliff with a strong wind blowing. I could dive and swim away, shut my mind or bury my head. I did not want this thing to be happening to us but it was. So I decided to turn to face that strong wind with as much force and as much knowledge about this illness, that I could manged to glean and from every source I could possibly find. Knowledge will give me power, if I could understand as much about this disease, as my small brain will allow, it would enable us to discuss and make good choices each time we needed to fight. Is it the right time for chemotherapy? should a stem cell transplant be an option? All these questions are asked daily by people with this very serious illness. I wondered, are these drugs the safest Hamada can receive? will they obtain the results required? I needed to learn fast, I needed to learn about the drugs that would damage further or take away the last remaining percentage of kidneys working. Oh yes! it happened, the young Doctor who prescribed by mistake, drugs for Hamada, that would have wiped out any remaining kidney function, had he taken them. After all the months of chemotherapy, all the money that had been spent getting him to and through a Stem Cell Transplant, had I not read, had I not intervened! With my newly learnt knowledge I was able to check what had been prescribed, query and shout loudly before any damage was done. For me gaining as much knowledge as I can, seems the only way to protect someone who is unwell and cannot do it for themselves. Many I know will think too much knowledge is a dangerous thing when dealing with medical matters, perhaps some are saying I bet she interferes too much. I do not believe this to be true and I really don't care, for without this knowledge how can we make good judgements when given the very serious choices we are expected to make.

I keep cheerful because I am very lucky to have an amazing family and good friends who support me in so many different ways. Our children who bring light and joy every time they visit and the fun we all have together and their constant support in cheering Hamada on. My dear friends who never fail to phone, often picking just the time when I need cheering up a bit, when the day has been tough or I am tired because I have spent too long in Hospital waiting rooms, dreaming of all the other places I long to be. My dear Internet friends with their great messages and the American Cancer Network ACOR, a myeloma list-serve whose knowledge is just incredible and so often points sufferers of myeloma in the right direction.

How my heart goes out to those who struggle alone or may have families who do not understand, or, even worse do not care about the strains of day to day living or caring for those with Multiple Myeloma. How badly it affects me when I see elderly folk appearing both to be unwell, struggling to manage their hospital appointments and to understand their 'chemo' regimes or their routine medications, they need our help. Then again I know quite clearly that I need to find strength when waiting on 'the edge of my cliff ' knowing my love one is in partial remission and wondering how long it will last this time, perhaps looking for changes and signs that might mean this precious time is over. Hoping that I will once again find ' the power within ' to go forward with knowledge gained, to continue to confront and fight, to obtain the best possible care for my love one, for as long as I too, remain well.

So to all of you that have asked these questions, I choose to turn always from the edge of the cliff and walk into the wind, I will put a smile on my face daily, with the knowledge I continue to learn, I will stand close to Hamada and help him to make good choices and I will face this 'beast' straight on.


Roobeedoo said...

Yes that just about sums up where I am today too! Waiting. Arming myself with knowledge in case the MM takes another twist in its progress. Watching for signs, symptoms. Trying to "seize the day" and not taking tomorrow forgranted. Never quite able to relax. Sometimes I envy the more passive patients' families because it all washes over them. But I never was one to accept "the inevitable". Every day with my First Love is precious and I want many many more!

Susie Hemingway said...

How true your words are but some of us are just not passive are we, we must fight every step of the way. It's the only way we know and the only way we can proceed. All very best wishes to you roobeedoo, I hope it's a very long time before there are any changes. Keep smiling.

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