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“Changes” – November 2010
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…
All Rights Reserved November 2010
Time For A Top Up.
After blood tests done yesterday at Lincoln County Hospital the results show that Hamada’s platelet level is extremely low at 16. So this morning he will have a further blood test to check antibodies(I believe) and then his specially ordered Platelets will come from Sheffield and he will receive these at the Medical Day Unit at Lincoln. A simply wonderful team there!
This transfusion will hopefully help make him more comfortable and halt the bleeding that can be seen in hundreds of little blood spots under the skin. Many on his face and even more on his arms and lower trunk. He will be at the hospital for at least three hours but this I hope will save a weekend stay. Many thanks to our Jenny who has been assisting with another strong arm, bless you Jenny, what would I do without you X
Addendum: Hamada spent six hours getting transfusions today – on arriving his HB had dropped to 8 and his Platelets only 10 He is back home now and feeling somewhat better
Autumn Days.
Beautiful mellow Autumn days spent quietly, enjoying precious time with good food and sweet music. Nothing terribly important to report. We are to meet the nice Macmillan Nurse who phoned this week, later this month. Hamada does not really need assistance yet from this lovely team of nurses and I hope it will be a long time before he does but as they say, it will be nice to have a visit, so the nurse can get to know him. I will have the kettle on, ready for a cuppa together. This will also give me a moment to ask for any advice.
We are planning to visit Haematology on the 11th to get CBC’s done, in future I will be able to read the kidney results on-line and this has now been set-up. So a future plan seems to be taking place and in the meantime we are looking forward to Hamada’s birthday at the weekend and a small celebration, a planned meal at the village pub which he usually enjoys very much. The photos here are of “Hemingway†It is a beautiful Autumn here in this little Village in the month of November.
A Good Visit.
A good visit at home yesterday from the Renal Team Nurse from Lincoln Hospital. She took Hamada’s blood and in future I will be able to read these results on-line and also see the remarks made by the Doctors regarding these.
We had a very nice chat, she was very skilled and a lovely compassion Nurse. Both of us felt comfortable with her and that she appeared to understood everything we felt. We discussed many related topics regarding Hamada’s care from now on, also the subject of his great desire to be here at “Hemingway†when the time comes. A quietly profession nurse that imparted confidence.
Hamada Kidneys are holding at the moment and he is eating well. His Haemoglobin is 11.8 which is amazingly good for him, so he appears bright in between sleeps and was very forth coming and listened carefully to all the nurse had to say. I feel very much better with the assurance that help will be available should we choose to avail ourselves of this, when needed later on.
Another little treat arrived from Eire yesterday from a dear old friend of mine.Wonderful wishes and a CD of super soothing music, along with little beautifully worded book marks and a enchanting emerald green cross shown below. Thank you dear Karen, your thoughtfulness has show such caring and great kindness. Hamada was so delighted with his parcel. Bless you.
This Rollercoaster Life – by Susie Hemingway
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 is
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 consuming as this Rollercoaster Life.
All Rights Reserved October 2010.
Oh This Rollercoaster!
Further to the post below. On Friday afternoon, we received two calls from Lincoln Hospital, one from the Haematology Dept and one from the Renal Care Support Team both informing us, that Hamada’s last creatinine blood level has lowered to 423 making his eGFR now about 12. Yes, a slight improvement ! The Urea had also lowered from 18 to 15.3 (which is good).
The Haematology 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 with their advice not to attend any 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 receive from day to day. As a Carer of someone much loved, I go from being saddened to the core of my very 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 nobody’s fault and I blame no one, 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 for the time being, which would now involve dialysis, we are both feeling relieved and peaceful that this huge decision is over. We have 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 drop, 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 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 the drug of success for many, and it may well have continued to reduce the Myeloma load for Hamada. One point to consider is that we all know that Myeloma leeches calcium from the bones and this alone after all this time, could indeed be the single reason the kidneys are failing again.
Still time will tell and I stand by my lay/woman’s judgement that it is the Revlimid + Aspirin that has compounded the damage. Further creatinine readings may in fact show this, if there is a marked improvement now these drugs has been removed?
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, 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 remarkable change in Kidney function, Hamada’s blood will still be monitored,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 taken yesterday, maybe I am ‘clutching at straws’ but this will in the very least, be most interesting! Keep well all.
The Story Of The Two Little Angels.
A very clever compassionate fellow MM sufferer and such a dear person Paula over at http://feresaknit.wordpress.com/ sent a brilliant surprise for Hamada today. I don’t know how to thank her for filling our day with such fun and delight but having my trusty camera at the ready I am able to show below, how happy Hamada was to receive these beautiful ‘works of art’.
After waking from his little nap I sat him by the window to receive his parcel. Just look at the delight on his face! First one little Angel appeared from the box. Wow’s and delighted exclamations followed.
Just look at this happy face as another Angel was revealed. The two little angels were then placed in several spots for perfect viewing and their exquisite beauty with their crystal decoration (which in the above photo unfortunately I have not managed to catch very well) while we admired and delighted over their perfect beauty! One holding a little sparkling heart and the other a jewelled star!
But their final resting place will be in Hamada’s bedroom of course, there was no way he wanted to be parted from his Angels. So now they have pride of place on his bedroom cabinet where they will twinkle away and keep him company when needed x and all I can say that these two little Angels have brought much joy and hope today and we thank you so very much dear Paula x
Not Good Days.
A return visit again yesterday to the renal clinic brought more bad news I’m afraid. Hamada’s creatinine level is now at 530 (eGFR10 ish) and discussion about dialysis did not go well either. As Hamada’s arm veins are now badly damaged from these years of blood work, he will have to have a line (perm-cath) inserted into the neck for the third time, (two ‘Hickman lines before) to manage dialysis, it cannot be done any other way for him. This also can’t be done at Lincoln Hospital only at Leicester, which is a 150 mile round trip. Hamada would then stay until Dialysis is established successfully (if it can be?) then when a slot allows, transferred back to Lincoln or Boston Hospitals for the regular three times per week x four hours routine of dialysis. The big consideration is, that this routine may take some time to achieve and is not of course without danger or risk of infection or bleeding with low platelets, poor blood etc and then the Doctors say how much extra time would this give him?
Many questions and decisions to think about. The problem that has arisen is that Hamada is saying he does not want to leave his home for this perhaps long stay. Both renal consultants have not given much hope for achieving this procedure without problems arising at some stage due to Hamada’s fragile state. This leaves Hamada with a dilemma and a big decision about whether this is the time to retire from the fight and let nature takes it’s course or carry on like the warrior he has always been. I believe perhaps, this is a temporary feeling of despondency. The renal team of course wish to prepare him ready with the line prior to complete kidney failure, which they say is imminent, as it is not wise to be admitted to Leicester as an emergency and not have this surgery which takes 45 minutes and must be done as an elective surgery procedure and ready in place.
This huge immediate lowering in kidney function after four and half years treatment for Multiple Myeloma has come about very suddenly. Hamada regained function from eGFR6 to eGFR17 during the past four years from diagnosis to this time. Has only recently gained a small reduction in Para-Protein on the Multiple Myeloma side and certainly appeared to be slightly improved.
There is no doubt in my mind this sudden reduction in kidney function has been caused by the Revlimid which was started in August this year at a reduced dosage 15mg every other day but it is known to gather in the kidneys and also by the daily use of Aspirin 75mg, which is also known to affect and reduce kidney function – see: Article by Robert P Kimberly and Paul H Ploz on Aspirin-“Induced Depression Of Renal Function†in The New England Journal of Medicine. Aspirin was given to avoid DVT while on Rev.
This will be a most difficult week trying to persuaded Hamada that fighting on will be worthwhile even though the consultants do not believe it will give him much extra time, then of course it is not my decision to make and I will always respect his wishes – we shall see what this week brings. If Hamada decides against dialysis then all further treatment will stop, we will then return to care under our local Doctor and palliative care will start here at home.
If Tears Could Talk. – for Dianne.
The following poem is dedicated to my dear friend Dianne who lost her beloved Vern to Multiple Myeloma in September 2010. Vern and Hamada were diagnosed together in early May 2006. Vern was the most courageous Man and a true Warrior against this dreadful illness. There has been many tears shed worldwide in the past few weeks as we all learnt of Vern’s passing. Blessings and Peace go to Dianne .
“IF TEARS COULD TALKâ€
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…
Dedicated to Dianne West – October 2010 – All Rights Reserved
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