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.

http://vap-news.com

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!

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?!!

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/

Not Good Days

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

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.

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.

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