When I started this blog more than four years ago I promised always to tell how it is for a Carer of someone with MM. It was important for me that my poems conveyed a little story of the days that unfolded on this journey. Sometimes the truth of my feelings may hurt more than at other times. I try to think of other MM sufferers, I truly do. Then of course those that may be hurt by my thoughts here, will not subscribe. So I continue through these most difficult days. The following verses describe my feelings during a very lovely birthday weekend for Hamada. Our son Jo spent a special time with his Father, we had a celebratory meal together and all in all it was a perfect weekend. Except for one thing although I suppose I have always seen Hamada through ‘rose tinted glasses’. I could now see clearly what I suppose others can see and have notice for some time, visual changes to my dear man’s face.
“Changesâ€
For I am not blind I see now
clearly as these given days allow,
For I am not stupid for thinking more,
willing you to stay.
This blighted weakness pursues you
like some demon spirit
whom I curse with my very being!
The once thought improbable
is happening darling man,
I cannot close my eyes
to forget these brown eyes fading,
I cannot shut my mind for all I need
is to see your smile.
These brutal changes tear at your resistance
this beloved face is changing
dissolving and vanishing from view,
but never from my heart.
I can at last, see this Beast Within.
This wicked Beast who will not leave you
However hard we try.
I am not blind – for I can see ,
this despair at Changes…
So many changes…
My heart hurts for you, Susie. As hard as this is, I think it’s good for you to truly see these changes as it makes these days even more precious for both you and Hamada. I denied the changes for too long and the shock at the fast ending was difficult. You keep on hoping and believing, but leave no words unspoken; this is your time. ♥
Thank you dear Dianne, It has been a difficult weekend with having the blood transfusions on Friday and H has felt unwell and sick since then but he is now managing to eat a little something and the headache is not so bad. A very watchful time.
I so hope you are managing through these days, it must be so difficult and my heart goes out to you.I think of you everyday. Still, keep tight hold of those precious memories of your dear and wonderful man.
Kind comments I wish to keep, taken from http://www.susiehemingway.blogspot.com
Steven L. Ritter said…
I pick the blogs that tell me the things that I really need to know. Not what people think I should know, not what is screened through the prism of not hurting my feelings or scaring me and not the everything will be OK glasses. Me, being the MM person, need to KNOW what is real. What I can truly expect. An honest view of this cancer. It is truly a blessing to read your blog and please NEVER candy coat your observations and feelings. However, I will still pray for healing and courage for you and Hamada.
12 November 2010 02:43
Elizabeth @ The Garden Window said…
Susie,
how hard this must be for you all….
12 November 2010 15:58
Portrait said…
your words break my heart today…though your continued strength inspires me…hugs to you dear Susie and to Hamada.
I have transferred some of the comments for “Changes” from http://www.susiehemingway.blogspot.com
Dianne in Nevada said…
Oh Susie – please don’t worry about how others may react to your beautiful words. If that is the rule, then I shouldn’t be posting anything anywhere in my current state. I find that it is helpful to share experiences, and others have the option to read or not … but it is far more important for us to get those words out. Especially you, with your wonderful gift for writing.
I understand these difficult days and how heart-wrenching it is to recognize the “Changes” the beast brings to our precious men. As I look back at some photos now I wonder how I could not possibly have seen the dramatic changes taking place. Love indeed helps us to look through ‘rose tinted glasses’.
You’re always in my heart ♥
9 November 2010 18:11
Lorna said…
Well you’ve had me in tears again dear Susie. I really appreciate your blog as it helps me feel that I am not alone as I walk with Mike on his Myeloma journey.
Now that he has his central line in, the weeks until December 6th are flying by and it all seems so very real all of a sudden.
Thinking of you both. x x
10 November 2010 13:01
Anonymous said…
I have really enjoyed this blog. Keep up the good work. The Septic Tank Man
10 November 2010 19:21
Lileng said…
Dear Susie,
As always, the words in in your poems touch my heart, because you speak from the deepest recess of your own heart. Yet “Changes” inevitably will come our way. You lovingly and bravely look on with such endearment on your beloved’s face, “rose-tinted” only through your eyes, almost and always refusing to turn away, for to gaze away is surely losing precious time with him.
I am all persuaded to believe Hamada to be such a beauty, a handsome man. For indeed he must be, to you, the love of your life!
10 November 2010 21:04
Roobeedoo said…
You write from experience and that is what is so important. Your integrity. Thank you for writing from the heart.
11 November 2010 14:17
Sandy said…
These changes are grievous to be sure and the anguish of it all is sometimes almost unbearable; except that when the burden is shared the heaviness of it is lessened – that is what you do so well. Those who cannot appreciate the purpose of the sharing are the losers… you and your precious Hamada are in my thoughts often.
I know to well of what you speak. The small subtle changes that happen daily can escape our view and our reality. Only when someone who has been gone awhile seems see the dramatic changes. If they are really good, you never suspect. But generally, you see their reaction, a small flicker in their eyes perhaps, and if you don’t see it, you feel it.
Thinking of you both everyday!
Oh my dear friend, such heart wrenching words/feelings!! I feel your pain….I do not know what to say to you except my thoughts, love and prayers are with you and Hamada….. xo
Susie, this is YOUR blog it’s important that you get stuff off your chest! If ‘we’ don’t like what ‘we’ read ‘we’ don’t need to come back for more. What I take from this is that time is precious and I must make the most of the NOW and appreciate the little things because ultimately that’s what life if made of – lots of little opportunities to find joy/happiness if we just look. Yes, I filled up when I read this but it means Bernard and Buddy both get an extra hug – whether they want one or not – just because… love and hugs xx
Susie, know that we all love you both. Although we are not together on a daily basis. Our love and prayers are with you. Always.
Thoughts and prayers are with you and as with a previous reader – if we don’t like it we don’t have to read it. Yes, I cried when I read your words because I too see the changes in my lovely man’s handsome face – you are right – we can both see the beast now. God bless you and give you both strength
I’ve recently started a blog, the information you provide on this site has helped me tremendously. Thank you for all of your time & work.
All our thought’s are with you love John Tracy and Holly