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.
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