~ 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.

24 October, 2010

This Rollercoaster Life!

As swooping as the Rollercoaster
my heart hangs in fearful suspended news
that fills these 'purple days'.
Days that bring shattered dreams,
only the strongest mind can hold.

My laughter becomes an echo that teeters on the edge
as I snap and break at disclosures strewn around.
My heart bleeds to dissolve this anger
which knows no bounds and as unruly as my mind.

Soaring high into this shimmering mosaic sky,
I hang on like a child that screams into the wind,
as these punishing swoops, turn into views as
fragile and as consuming as this Rollercoaster life.

All Rights Reserved October 2010.

21 October, 2010

A Rush For Treatment

For a short time now Hamada has been having problems with his toe nails and I have insisted he show these to the nurse at MM clinic. She recommended good massage to what first looked like dry and flaky nails. This week Hamada woke during the night in much pain, when I looked at his feet I could see that most of the nails on one foot and some on the other foot were curling, very inflamed and one toe looked as if it was turning black in colour. This immediately alarmed me. I bathed his feet in quite hot water rubbed them with E45 and a little antiseptic cream and bandaged the infected one. The next morning I called and made an immediate appointment with our local GP. He has now given Hamada some antibiotics - suitable for someone with Kidney failure and some thick antibiotic cream to be applied twice a day. He mentioned something about being common with MM sufferers due to a low defence against these sort of infections. Someone also recommend tea-tree oil so I will apply some of that also, in between cream massages. I was surprised at how bad Hamada's feet have become and it does seem to have happened quickly. I should have noticed this and feel somewhat guilty that it managed to get to a bad painful toe. Oh well at least I hope we have caught it in time.

I feel like hiding, just like the bug above, in my rose photo!

17 October, 2010

Oh This Rollercoaster!

Further to the post below: On Friday afternoon we received two calls from Lincoln Hospital, one from the Haematology Department and one from the Renal Care Support Team both informing us that Hamada's last cretinine blood level has lowered to 423 making his eGFR now about 12. Yes, a slight improvement! The Urea has also lowered from 18 to 15.3 (which is better)

The Heamatology Consultant now wishes to see Hamada in six weeks! he is sending a letter to confirm this even though Hamada had accepted it completely and was most agreeable, not to attend more clinics. So God willing maybe, just maybe, once the Revlimid and Aspirin leave his body, the kidneys may improve enough to continue with more MM treatment.

I am sure there are many who understand how hard these changes are to recieve from day to day. As a Carer of someone much loved, I go from being saddened to the core of my being, trying so hard to keep Hamada cheerful and with at least some hope. To being so elated that I spend my days dancing around like some demon mad woman attached to my iPod forgetting to buy Vegetables and buying Lilies instead! It is nobodys fault and I blame noone, it is as it is.

Yet, this rollercoaster of emotions is so very hard to deal with but I do so love being right about this, certainly for the time being at least.

If the Revlimid and Aspirin leave the body could it restore the kidneys enough?!!

14 October, 2010

The Peaceful Feeling Decisions Bring.

After a worrisome week and Hamada's well considered decision not to continue with more treatments certainly for the time being, which would now involve dialysis - see http://www.susiehemingway.com/ we are both feeling relieved and peaceful that this huge decision is over. We had what we believe was the final Haematology consultation today, unless a miracle occurs and we have had a few of those before. So with the Doctor and lovely Nurse Tracy present, we discussed all that was needed. It was a bittersweet consultation after all these years and with the last results from the second round of Revlimid, the Paraprotein reading continues to show a reduction, this time -4 bringing Hamada's count to 12 from the recent 21.7 It is a disappointment beyond compare that the failing kidneys which were the first reason to suspect MM in the first place, may well be the ending point also. Because of the suddenness of this lowering of kidney function, it is hard for me not to relate it to the Revlimid + Aspirin but I know of Revlimids great success worldwide and for some without kidney problems the lowering of the PP in just two courses really shows that this is a drug of success for many and may well have continued to reduce the Myeloma load for Hamada. One point to consider is that we all know that MM leeches calcium from the bones and this alone after all this time could indeed be the single reason Hamada's kidneys are failing again.

Still time will tell but I stand by my lay-woman's judgement, that it was the Revlimid and Aspirin that has compounded the damage. Further creatinine levels may in fact show this, as it clears from the body?
It is hard to take in the severity of how ill Hamada is, when I look at him there is no outward sign that has suddenly appeared! A tiny puffiness around his eyes but no swelling of the ankles, just a continuous need for sleep and a very tiny amount of energy. He is still eating reasonably well and always his cheerful self, dignified and eager to retain control of this beastly illness. As he has managed before with a very low kidney function eGFR (7) at one point and survived for these past four and a half years with a eGFR never being more than 17 at the highest point. Is it then not crazy for me to expect more months? I am aware of course that should the kidney function nosedive once more, then it would be a very short time indeed. Although we have finished all clinics now unless there is a dramatic change, Hamada's blood will still be monitored of course, with the first visit by the out-care renal team. A nurse will be coming here on the 25th of this month. I am now waiting for the last creatinine reading. Maybe I am 'clutching at straws' but this will in the very least, be most interesting! Keep well all.
Photo: Showing Hamada with his Angels - story on http://www.susiehemingway.com/

09 October, 2010

Not Good Days

An Update Now On: http://www.susiehemingway.com

07 October, 2010

Latest News.

Not such good news for Hamada this week. In the past few days it has be detected that Hamada's kidney function has taken a sharp downturn and in an effort to halt this as quickly as possible and thus the need for dialysis, Revlimid, Dex, and the GCSF injections have all been stopped, certainly for the time being. This has been a huge disappointment, as Revlimid was proving to be of some help to Hamada. He has only completed two cycles of this regime and all blood counts had improved a lot and PP also reduced. This has been an exhausting week for both of us and we complete it tomorrow with a further morning at Lincoln for a consultation with two renal specialists for their assessment and will up-date when we have further news.

02 October, 2010

If Tears Could Talk. - For Dianne.

If tears could talk as gentle fall
they gather all, in misty path that's made.
On flushed cheeks like warm 'soft nymph of sadness'
huge droplets fill sad eyes
as cleansing in their wake
this pain so deeply felt.

Whirlpools of feelings
from damaged heart and soul.
A loss that cannot be repaired or replaced,
these tears that bring clemency to my needs.
Rinsing glistening lashes, streaky as torrent falls,
a quiet private heart-rending washing
that completes to soothe.

Until futurity
this sacrament of release will return,
giving focus and a little courage.
If tears could talk...
their wordless perpetual out-pour
would denounce all pain.
If tears could talk...

This poem is dedicated to Dianne West who lost her beloved husband Vern, after a courageous battle with Multiple Myeloma in September 2010.

All Rights Reserved.

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