My Work Here Is Finished.

There will be no more entries here, Hamada's journey is now complete and so all further writing will be over at http://www.susiehemingway.com/ starting with "A Snow Covered Village In December" which tells about the weekend of 'celebration of Hamada's life'. Thank you dear ones who have followed faithfully here, for all your wonderful comments that spurred us on daily, for all your superb support that helped us keep up the fight against the most difficult disease of Multiple Myeloma. I send all my very best wishes, hope and love, to those who continue to fight the battle against Multiple Myeloma. I will continue with my support and my hope, that a cure will soon be found.

Let Me Not - by Susie Hemingway

Let me not falter dear Lord.
Let me not fall at this final hurdle.
Guide me now to complete this task.
Let me not plaintively wail and scream as my heart doth now.


Allow me to show dignity that he always showed.
Let me not stand beneath the stars and scream his name aloud.
Let me remember this day, as we honour him.
Grant me the courage that he always showed.


Let me not go down on my bended knees and shout at the sky,
And implore you to return him to me.
Let me not fall at this final hurdle.
Give me the strength Oh Lord not to fail,
with this final task...


Susie Hemingway December 2010
All Rights reserved.


"Poetry is the opening and closing of a door,
leaving those who look through to guess about
what is seen during a moment" Carl Sandburg.

" I pray that the poems written by me on this blog have done just that" Susie Hemingway.

Gone to Live with God.

My beloved Hamada quietly and peacefully and with great dignity left us today to go home to be with God.

Dear Universe a new angel has joined. He is handsome, caring, loving and a great symbol of courage and strength. His wings spread across the globe sincerely and lovingly touching the lives of many. His journey on earth has been an inspiration of courage to us all.

The Start Of A Final Journey.

Just a short update for those who are awaiting news of our dear Hamada, especially our family in Egypt. Hamada has started his final journey home to rest. Yesterday a wonderful nurse from the Macmillan support team came to visit at home and confirmed what I already knew. Hamada is slipping quietly to his resting place. He is no longer speaking or drinking he has a 'rattle' on his chest and his body is slowly shutting down. I have spent all of the night hours watching over him, catching small naps when I can.

The Doctor is to arrive shortly and will bring or prescribe all necessary drugs to administer by injections or patches for Hamada's comfort now that he is not swallowing well.

For the nurses who I know read this web-blog: Hamada did not pass urine for 24 hours, but today some, which I believe shows his kidneys have not completely shut down yet. It is a much better way for him to 'pass' if they do.
As our Jo said, perhaps this is our last miracle for this journey to end peacefully this way and I pray with all my heart for this to be for my beloved Warrior. It is also possible that he will stay in this 'dream like' state for a few more days yet, although I do not believe so, he is extremely weak now.

My dear sister Jenny and brother-in-law Ian, lovingly came this morning to help me tenderly bathe him and to change linens and to make Hamada smell just like I know he loves, all friends will know how fussy Hamada is with his love of good cologne. He is peaceful and in no pain, dearly sweet and surrounded with much love.

Night Vigil

Hamada has spoken very little during the last two days. managing only to smile and greet the family who have all been here at "Hemingway" this weekend. I know by his smiles that he has enjoyed so much, seeing them all, during this bittersweet weekend.

Jo gave his father a wonderful shave something that I was not managing to do very well! It was a wonderful time of family closeness. I received some of the best much needed hugs, which have given me more courage to continue after this long worrying week.

After everyone had left I managed to get Hamada to his favourite chair in the sitting room during the early evening, thus giving me time to put fresh linens on his bed. He was not speaking at all during this time not eating anything, just dozing on and off. During the middle of the evening he became more agitated and seemed a little distressed so I helped him back to the safety of his bed.

As I settled him down for the night he spoke, his voice clear for the first time in two days. He was tearful and told me that he was very tired now but needed to say something, struggling to find the words he said that he did not think he could continue any further, almost as if he was asking for permission to go. I let him know gently that it was now time for him to rest and for him not to be concerned about anything but sleeping now. He spoke about his love for me and his worries of leaving me and I reassured him that I would be fine, his beautiful words brought a few gentle tears to us both. I laid my face close to his as he settled into a very calm deep sleep and so a time of loving observation and a night vigil for me began. It is now 6am and Hamada is still sleeping, his breathing just a gentle rhythm in the quietness of the house and as I go for my shower I wonder what this new day will bring and is it time now?

Such A Difficult Time.

The terrible headache which has been with Hamada for a week now, has become too much for him to bear. Yesterday he was prescribed control release Morphine and also liquid morphine for extra support. As we are now back with our own local GP, he is of the opinion that this headache is being caused by the lowering of kidney function even further. The kidneys will have course, taken a great strain during the recent blood and platelet transfusions even though great care was taken to transfuse really slowly ( 6 Hours ). Hamada has been in such great pain from this headache which cannot be allow to continue, hence the Morphine being started yesterday. All the family are here this weekend which is a great support. So much joy they all bring with them and they have been quietly chatting for short times with Hamada and the delight shows on his dear face as he enjoys seeing them so much. We are being spoilt as we have both had recent birthdays, wonderful days all together...just being...

This Must Be An Honest Journal.

Hamada has now received two whole blood units and one of platelets which took six hours, being slowly transfused as to protect the remaining kidney function. Still from Friday evening Hamada has been suffering from an extremely bad headache and he has vomited several times. I have been carefully monitoring his blood pressure and temperature which have both been raised and at one time gave great cause for concern leading me to phone the Doctor for further advice on getting this pain under control. It was not a pain in a single place but around the temples and something like a migraine type headache affecting his eyes. Giving gentle massage to the area seems to help some. It has been an anxious four days I must admit but being as honest as I can, I feel his kidneys are shutting down and we are approaching the end.

A Watchful Weekend.

A very watchful weekend for me as Hamada recovers from six hours of transfusions on Friday. Transfusions were done very slowly as to protect the kidneys as much as possible. Hamada is very weary as normal but what is concerning me is the headache that will not leave him. He had a slight temperature which has abated now and this headache is not in one place but appears to be in both temples. He already takes six paracetamols and two Nefopams daily, so really at the upper level with trying to protect the little kidney function left. Hence I have nothing to increase the help with this annoying migraine type headache and of course I am aware of blood clots and this has been my worry since Friday. So not much sleep for me. He says he does not wish me to call a Doctor as it is not bad enough for that ! Certainly I would call the EMS if I felt it was getting worse or BP increased. I am hopeful that it will settle tonight but it's almost like his body does not like this blood (2 units) or the platelets (1 unit) very much. If not, a visit from or to the Doctors tomorrow, will be the order of the day.

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 special 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 hopefully 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.

Changes.

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 maybe hurt by my thoughts here, will not subscribe. So I continue through these most difficult days. The following two 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.

Extract from "Changes"

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.

Changes... So many changes...

All Rights Reserved November 2010

Unabridged version of "Changes" is now on http://www.susiehemingway.com

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 on this month. Hamada does not really need assistance yet from this wonderful 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 may get to know him. I will have the kettle on ready for a cuppa together. This will also give me a moment to ask questions and further 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 from “Hemingway” It is a beautiful Autumn here in this little Village in the month of November.


Photos: Susie's Collection at "Hemingway"

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.

All Rights Reserved.

Hamada and Susie at Recent Family Celebration.

Hamada attending a recent family celebration with courage and dignity, staying for three hours and enjoying an evening of laughter, fun, good music and wonderful food. What a complete star!

Three Years Of A New Life - A Carers View.

As Hamada approaches three years since his Stem Cell Transplant which undoubtedly saved his life, we are eternally grateful for the extra years he has obtained from this procedure. So many of us debate about which way treatment for Multiple Myeloma should evolve. What drugs to start as front line treatment, what choices of drugs to continue with, in an effort to help and support. Even with the risks that most carry, for the many problems that for most MM patients do arrive at some time or another.

Should it be the smallest amount possible? Should you be trying to support and protect with many of these not always proven drugs as Hamada has done and continues to do, or should you go it alone?

Then what about the problems that many of these drugs can bring to someone who is now so vulnerable. What is the right course of action to take? Don't we all ask this question at the beginning of treatment. It seems there is such a fine line to balance the needs of these drugs and the damage that some may do. It is indeed a complex issue and one which must be constantly monitored by the specialists and also through the watchful eyes of the caregiver. How important to note these sometimes subtle changes in a patient, to try to assist your consultant with good clear voicing and so one day all knowledge gained, will go forward to finding a cure for this most complex and difficult of diseases.

Ideas have changed even in the four+years that we have been on this journey. We have listened and read of new transplant procedures coming to the fore in parts of America, where they are now very hopeful and talk of a cure. Still, looking back on the past four years of treatment for Hamada, there was really no choice but to proceed to SCT as quickly as possible. His kidneys were failing, he had succumbed to two bouts of pneumonia, one so severe that his body was shutting down and we knew this was really his only chance to gain extra time. Hamada's spine was already damaged and he was in agonising pain which thank goodness was helped with radiation. As soon as he recovered from this, he fought hard to reduced the Para Protein as quickly as possible and to get to start his 'new life'.

I have read so much about MM over this past four years and four months, learning as much as any lay person can grasp from many different areas and from the voices of many other sufferers worldwide. I have been grateful for all the knowledge gained from good listserves such as ACOR and from fellow sufferers of MM and carers alike.Their blogs have given me a good insight into how MM affects/unfolds in so many very different ways for each patient. For sure, no one with MM is the same, treatments will be different for all. Some do better than others as one type of chemotherapy seems to work for one person but not for another. Many appear to remain in remission or continue with very low PP for many years. How different we all are.

I am a poet not a medical person, so it has been the biggest learning curve of my life. Still my thoughts right at the beginning of this journey and also now, were that if I could record and write just the way our personal journey unfolded, using my words in the form I know of poetry. Just telling of my feelings of these past years may help other carers to know of the fears, sadness, the coming to terms with, and all that a Carer feels, that invade thoughts daily in an effort to try to help loved ones. Perhaps this blog may help others who are just starting their journey along the same path, for others it will not, unique as we all are.

For carers who read my simple poems will know, that each tells a story of that particular time in this journey, just as the changing seasons tell us what is happening daily. To convey my feelings in this fashion, also helps me to remember, just how I felt at the dates show on each poem.

Perhaps for some this is a strange form to write a diary of events, but MM is a complex illness as we all are and it is perfect for me, thus enabling me to remember every minute of it all and to free the emotions that often fill this time.

Hamada is continuing well I feel with Revlimid, now on his second course, not having any side effects that he cannot manage. Of course he is more than weary, managing his maintenance drugs daily and the dreaded 40mg of Dex weekly along with Revlimid, always grateful for these past extra three years, which many times prior to the SCT we never thought would be possible. I am aware of course that this is not always the way to proceed and for some if they are otherwise well and not with compromised kidneys or bone lesions, will not choose SCT until all other avenues have been exhausted.

There is no right or wrong way that I can see, only that each person should be treated in their own unique way, as symptoms present themselves and by good valuation of bloods and careful monitoring of precious bones, not from some 'set out' protocol. Still what do I really know? only that dear Hamada is still alive after a very poor prognosis and doing dare I say 'fairly well'.

Stay well, all who read this post and continue to make good choices as I continue to record this journey in 'poems of love'

All Rights Reserved.