~ 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.

07 October, 2008

A Partners Guilt

So many Carers of people with Multiple Myeloma are either wives, husbands or partners. caring for their love ones. A tough job to undertake, often immediate and always completely life changing. It is not only for the sufferer of this destructive condition whose life undergoes such a dramatic change but also for the Carer, whose life suddenly goes spiraling in a different direction to the one he or she imagined. Myeloma by and large but not always, seems to present itself in later years, very often about the time of approaching retirement. A time when you perhaps imagined doing things together, or for some of the time separately, that you dreamed of throughout your working life. Husbands who looked forward to many days spent on the golf course for example, who now spend their days in hospital waiting rooms or tending their love ones. Woman who had imagined easing up on the daily rush of fitting work around home care and had hoped to spend their days, for perhaps the first time in their lives after caring for their families, doing the things they had long to do. All these things are true for me and my love one, a life changing course of direction for us both. It is not easy missing the things I loved the most, dancing together and the passion of our type of relationship, walking together, exploring new places, help with entertaining - nothing quite so nice as the man pouring the drinks - and now often seeming to have a child again, instead of the powerful man I knew so well. So for me, I am often filled with guilt at missing those things. So I pull myself back, when thinking of all the things that Hamada loved the most too, and now must miss so badly. How frustrating it must be, not to be able to play any boisterous games with his beloved Grandson when he visits. How sad it must be to rely heavily on us all for simple things, like getting to his feet from his chair. Not being able to walk freely or for any distance, knowing he will never run again. For someone who was once so fit, it must be purgatory. So how dare I even think about things I miss, or dreamt of in my retirement. It is true to say that many younger people are now being diagnosed with Multiple Myeloma, so it is not entirely a disease of the elderly, how much worse it must be for those who still have young families to support and care for. I cannot imagine and in that respect I am so lucky, but I still feel guilt for wishing that things were not this way.



Now to the second guilty part, and I wonder how many partners feel the same as I do. Could I have picked up that he was so unwell sooner. Hamada had achieved over the years the highest qualifications in education and had become a very successful business man. He travelled to many places but mostly to the the Middle East where his superb knowledge of English and native Arabic helped with the education of others and he was indeed very successful throughout his career. During his early fifties I had noticed a slowing down, he was not nearly as dynamic as in early years, certainly not so driven - the same can be said for most of us as we get older, I suppose - but for someone like Hamada whose very core of being was his career and work ethic, it was quite a dramatic change. So here comes my guilt, could I have missed signals that he may have had MGUS or in fact 'Smoldering Myeloma' working away in his blood for a number of years before the full blown Multiple Myeloma was diagnosed. Could I have picked- up on the fact that something serious was 'going on'. Something that had we caught it earlier could have saved his kidneys from such profound damage. Hamada always had regular blood tests over the years and many medicals for insurance for work contracts , but never of course the type of blood or urine tests that would have alerted us to this disease. He never had bone pain or kidney symptoms and never were any unusual blood problems detected. Yet, as the closest person to him, could I have picked-up, that this dear man was changing, or suffering in some way. That the slowing down career wise, the poor decisions regarding his businesses, the financial errors of judgement made, were in fact because he was very ill. Perhaps indeed already harbouring the growing Myeloma of abnormal plasma cells and that by the time of diagnoses were in 80% of his blood stream! Could I have noticed something? anything? that would have alerted me to get specialist help sooner. Tell me, do all Carers feel this way? I know the outcome of this particular disease cannot be changed but would Hamada have stood a better chance and gained more years, had it been diagnosed earlier. Yes for sure, this Carer feels some guilt, do others feel the same I wonder.

9 comments:

Michael Morse said...

Earned anger and unearned guilt. You have paid for your anger with much more than most people can imagine. You are healthy, your partner is not. Not only are you watching your other half; your soul mate, suffer, you are suffering as well. Their pain is your pain, to be bourn stoicly, heroicly and alone. You are the rock, and rocks don't complain. If hit hard enough, however, rocks will shatter, and you have been hit by a sledgehammer, again and again. So get mad, and do what you must to hit back, without guilt, or shame, because you have earned it. The guilt you are feeling was not earned, and must not be allowed to enter your mind. You have nothing to be guilty for, and everything to be angry about.

Keep up the good fight, Susie, I know it isn't easy.

Lori said...

I too am a caregiver to my husband with MM (age 49 and otherwise perfectly healthy). Was diagnosed in the middle of our coast to coast move from Maryland to California, selling & buying homes, moving 27 years of crap, getting our children settled in at University, a nightmare. So many plans we had in this wonderful new adventure that have now been derailed and on to an adventure not of our choosing.

While I remind myself that it is happening TO HIM, it is also happening to me. Just in a different way. He is the one who feels guilty and I told him NO GUILT in this. He broke down and sobbed. I said, "we really don't have time for those kinds of feelings, its a total waste of our energies. If you feel you have to make amends to me, then do it by doing your best to get well." Little snippets like that come out each day and consider them good to talk about. Otherwise the "elephant in the room" situation makes it intolerable. I have dark places too that make me feel selfish. How will I survive, he's the breadwinner and we will be broke and he'll be disabled or gone. I try to face those head on and then leave them. It feels like guerilla warfare at times. It comes on me quickly, I suck it up, confront it, shoot at it and depart quickly! Try to stay focused and positive and enjoy the little things I have time for.

Thanks for your post I found it on the UK cancer site What Now. Mine is less open because people at his work and family reads it. But it is at www.caringbridge/org/davidpuente. You'll notice in the MY STORY section that I've stated a Full Recovery. That is originally how it was presented to us. Of course we have since learned its not that simple, but haven't shared that with his family and work, so leaving it as is.

Roobeedoo said...

Guilt is an exhausting emotion. Like your other commenter said, you don't have time for guilt! And you certainly don't have the energy to waste on it as a caregiver. But you do need to make some time for yourself too, honey. Pursue your own interests and develop friendships outside the home. Otherwise you will find yourself lost when he is gone. (Sorry.) That's what I dread the most - being left alone. And yes I feel guilty about any time I spend away from my husband while we have potentially so little time together, but otherwise I will lose my identity when I lose him. You need to build up your own resources, have plans for the future that aren't about you as half of a couple. It is hard to do, but will give you some strength for when you need it most. Meanwhile, "seize the day!"

Susie Hemingway said...

Thank you Michael - I shall 'take on board' all your good words, and sound advice. Get Mad eh! now that sounds good. I think I could manage that.

Susie Hemingway said...

Thank you for your comments on this post Lori - I will catch-up with you on "what now UK" - You too keep strong.X

Susie Hemingway said...

Hi Roobeedoo, I seem to have provoked some strong emotions here regarding, "A Partners Guilt" how good is that! Firstly, feeling some guilt at not having the life we once led is, I would say, a pretty natural one, but it's there just the same. Yes, for sure I still have future dreams and I am so lucky to have some good friends wanting to share those times with me, but for now I wished to have all these days with my husband, 'soaking up' the time we have left together. I must point out that feeling guilty re: "could I have missed something" is a real one (for me) How many other Carers perhaps feel that they could have spotted some little sign, that would have alerted them to the fact earlier, that their partner was very ill. I bet there are a few but I dont dwell on the guilt.
As to building up my own resources and making sure that my identity is not lost. That is not something I think is likely to happen - I am, - because of the life I have led - always been, a strong independent woman, hence ("A Power Within") with many outside interests and friends and I do lead a very good social life. From the moment of diagnoses in many ways, (my poems for example), I started the greiving process along with all my personal friends xx who support and joined me in this journey. I thank them all and also you for the very good comments you make
Heaps of Rainbows and Buckets of Stars my friend.

Moriah said...

Great Work.

Cora said...

Thanks for writing this.

Anonymous said...

Susan,

This is so poignant. I was diagnosed in 2008. It seems, from looking back at my labs, I had MM in 1998. I know I kept feeling like I was dying and expressed this sentiment to friends. I had trouble getting out of the car or unseating myself from a seated position. I remember pain--days when I could not walk. I had labs. I was tired all the time. I thought it was my weight. But, no...cancer.

This passage is like my story. I know how you feel.

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