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 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