Susie Hemingway - A Power Within.

My Work Here Is Finished.

2010-12-08T02:33:00.006Z

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

2010-12-02T09:26:00.008Z

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.

2010-11-23T15:50:00.006Z

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.

2010-11-23T11:58:00.011Z

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

2010-11-22T05:34:00.007Z

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.

2010-11-20T08:07:00.004Z

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.

2010-11-16T14:49:00.022Z

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.

2010-11-14T17:42:00.006Z

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.

2010-11-12T08:10:00.005Z

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.

2010-11-09T10:38:00.012Z

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...

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

2010-11-05T12:56:00.007Z

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!

2010-10-24T16:51:00.014+01:00

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.

http://vap-news.com

A Rush For Treatment

2010-10-21T22:38:00.007+01:00

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!

2010-10-17T15:27:00.008+01:00

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.

2010-10-14T21:47:00.019+01:00

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

2010-10-09T12:10:00.003+01:00

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

Latest News.

2010-10-07T22:21:00.003+01:00

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.

2010-10-02T16:16:00.011+01:00

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.

Hamada and Susie at Recent Family Celebration.

2010-09-28T07:20:00.003+01:00

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.

2010-09-21T08:29:00.035+01:00

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'

My Thoughts Today.

2010-09-18T07:36:00.011+01:00

My thoughts and prayers today are with Dianne and Vern West of Nevada USA. Vern who was diagnosed with MM at the same time as Hamada, has endured so much with courage and such great dignity.

We have supported each other along the way with this fight against the 'beast', through many trials and tribulations for both dear men during this past four + years. Dianne fighting every step of the way to obtain the very best care for her beloved husband with such support and so much love and goodness, while with courage and wise words supporting others like us along this journey.

Today Vern entered into hospice care and my heart goes out to them both, with love and hope that in the coming days they find the eternal peace that they so deserve.

Vern and Dianne visited England some time ago for their 30th Wedding Anniversary and so I post these photos taken yesterday at the highest point 'Red Hill' near my home; as I blew a prayer into the wind, to cross an ocean, in honour of them both.

addendum: Vern West passed away on the 22nd September 2010 "eternal rest give unto him Oh lord and let perpetual light shine upon him " His loving wife Dianne was by his side.

Views from Red Hill: Photo by Susie Hemingway.
All Rights Reserved 2010.

As Summer Fades - A Cancer Prayer.

2010-09-12T10:56:00.008+01:00

As Summer fades and the air is filled with signs of Autumn.

As the leaves start their change in colour and their sprinkling fall;

the rhythm and flow of life continues its clever path.

This in-between state that suspends betwixt the seasons, is all my heart desires.

To call on the Gods to allow a stay with compassion,

cleverly keeping this season of harvest and life.

Protect and preserve these mere moments of joy and utter no anguished change for me,

as grateful diamonds of joy spill from my heart.

Take these vibrant days of colour with their smiles intact, allow for no fear,

for you have always been my brave one but you are more so now...

Do not snap and break this plan I ask,

keeping this Autumn complete and in my whispered prayers.

Photo from Susie Hemingway's Collection.

Further To The Post Of Yesterday.

2010-09-09T16:26:00.005+01:00

Just the best news received today at Hamada's consultation at Lincoln. I felt he was doing well (see below) but to my surprise, the Para Protein results were through and a wonderful drop of 5 !! was recorded and is now at 16. All bloods have improved some. So with bated breath dare I say it looks like Revlimid is working it's magic! This was such a surprise to us, as we did not think we would get these results so soon. Hamada has had just one course of Revlimid so far.

I can hear him in the other room snoring as he has a little nap and if I peep I am sure there is a smile on his face, as there was on the consultant's today. How wonderful is this, such a long time since I have been able to write something positive and far too long since we have had any good news to report. What a warrior!!

Doing Well I Feel.

2010-09-08T09:07:00.006+01:00

A short update to say that Hamada has now completed his first course of Revlimid and all seems to be progressing well. No need for additional Platelets which was rather a problem with Velcade, bloods counts are not too bad. We attend Lincoln''s Haematology again tomorrow for the weekly blood tests and then the completed months consultation. Important bloods from last week are shown below for those who follow such things.

Haemoglobin 10.9
Platelets 55
Neutrophils 4.99 ( big improvement here)
Hamada continues with all other maintenance drugs and now added daily aspirin also trice weekly Filgrastim and once weekly Aranesp.

We Pretend - by Susie Hemingway

2010-08-23T13:34:00.011+01:00

Do we pretend dear one?

As judgements are made and disclosed

In fretful haze we nuzzle closer

To mirror the fears that we know

Do we pretend dear one?

As smiles and platitudes wither my heart

Perhaps we do, as we dream anew

Of positive days that will last.

We laugh as we follow regimes

But I'm frightened of this new terrain

Praying, dreaming and hoping

That this time there will be some gain.

Still in the consuming darkness

When sleep will just not come
I hear you fretful in slumber

Are we pretending dear one?

As in the yellowing dawn light

My heart pushes down the pain

I think of all the others fighting a similar game,

I think of how far we've all come

Such bravery that cuts through this bane

To push down this 'Wicked Beast',

And make positive steps to gain.

No! I don't think we're pretending

Not in the very least

I'm proud of my Warrior

Who struggles through, with steely belief

Proud of my friends who daily defend

Giving him cause to go on,

And yes of course I know we can make it

We've really no need to pretend,

We've really no need to pretend.

A Short Update.

2010-08-13T09:46:00.008+01:00

After a rather long visit with Hamada's consultant at Lincoln yesterday it was a general consensus between us that Hamada would start Revlimid today and the consent forms were duly signed. His HB and Platelets readings were a little better but Para Protein continues to rise.

His monthly regime is as follows:

Lenalidomide ( Revlimid) 15mg every other day. For 21 days - weeks rest.

Dexamethasone 2mg x10 on two days per week for three weeks - weeks rest.

Aspirin 75mg Daily

Allopurinol 100 mg Daily - which is already prescribed in maintenance tablets.

Lansoprazole 30mg - which is already prescribed in maintenance tablets.

Filgrastim Injections 300Micrograms/0.5ml on three days per week.

Hamada is to have weekly blood tests every Thursday at Lincoln and I will ring in the afternoon to check readings and then this will ensure that bloods are carefully monitored and extra platelets or treatments can be received on the Friday should they be needed.

I know you all join me in wishing Hamada all the luck in the world that this treatment will be the one to help reduce the Myeloma burden and thus give him more time with us.

Rose Photo: "Cleopatra" from my garden.

A Little Does You Good.?

2010-08-09T11:36:00.005+01:00

Perhaps we are doing something that is completely frowned upon by the medical profession but just as the last of the Chemo free days are here, a few real treats have been in order. The photo above shows Hamada with a Guinness Beer, certainly not allowed during Chemotherapy but as he approaches the Revlimid regime the last of this particular treat at least for a while, was much enjoyed. ( Sorry Consultants but we are taking a chance, quality of life and all that )

I think you will agree that Hamada looks well indeed. I wanted to show this photo to give other MM sufferers further courage, that although you can go through some terribly low moments and awful medical problems to solve and Hamada has had all those believe me. Remember Velcade failed for him and now with a 20+ M-Spike. he is to try yet again to reduce this.

Hamada had a Stem Cell Transplant 2 Years 9 months ago and was diagnosed with MM in 2006. He does have difficulty walking and needs help with many things especially getting up from a chair and although not caring for noisy gatherings, he has manged a number of quiet meals out and one or two smaller social occasions during the past few few weeks.

It has been a good Summer for us both with no big problems to cope with and how wonderful that Hamada still has the courage and the will to continue this battle. Best wishes to all making this same journey.

A Little Update:

2010-07-25T09:40:00.019+01:00

Hamada has been resting well since the four cycles of Velcade chemotherapy treatment, which as regular readers will know, was not successful for him in reducing the MM burden. He has been having regular blood checks and visits to the Renal Consultant since then. For those who understand the current blood readings and are interested, the basics are as follows:

HGB 10.6

Platlets 71 ( poor but a big increase for H )

WC 1.7

NEU 1.64

Cret 376

and the dreaded PP (M-Spike) now 19.6

As the para protein reading is so high, in two weeks Hamada will start with a low dose of the chemotherapy drug Lenalidomide (Revlimid), in combination again with Dexamethasone. Hamada is currently doing yet another Bence Jones reading, so all data will then be up-to-date in readiness for this course.

While taking Revlimid Hamada's blood will be monitored closely, Filgastrim will be given if there is a need. Revlimid can reduce the production of platelets just like Velcade which was such a problem last time and also reduce the production of white blood cells making the taker more prone to infection. The exact way Revlimid works is still not completely understood but it has the ability to block the development of new blood vessels, cancer cells need to make new blood vessels so they can grow and spread. I pray this will be the chemotherapy to help Hamada. he has tried so hard and been through so much.

We have a list of the possible side effects much the same as the Velcade treatment and once again it will be a huge balancing act. Hamada is lucky (if lucky is the word! ) to be able to try to fight MM once more.

He is for sure an amazing Warrior, like so many who desire to 'kick the butt' of this wretched disease.

We have had a good restful summer so far and Hamada although very weak, has managed a few outings apart from just the hospital trips! He appears happy daily and content with his quiet life.

My best wishes to all fighting the same battle, keep strong and please stay in touch. I do welcome your comments.

Photo: A Rose from my Garden for you all x

The Gentleness Of Your Silence - Susie Hemingway

2010-07-17T12:31:00.017+01:00

As soft as the evening breeze

that trembles through the tallest trees

as meditative as your words allow,

entwined and tangled in these Summer days.

The crystal clarity in your eyes

tell more in a dear face of courage,

than the gentleness of your silence.

Not so much now a belligerent waging war

nor a stricken fight,

just a gentle silence that goes on into the night.

Words are difficult for you to find

It does not matter for I don't mind,

the gentleness of your silence is far more

than feckless words that blow in the Summer wind.

The brushstrokes of our life unfold clearly

as you focus daily to capture strength,

this Summer of endless joys

nothing more is needed,

no more

than the gentleness of your silence...

Sadness At News

2010-07-16T02:51:00.003+01:00

This week we learnt that our friend and Hamada’s fellow warrior, travelling the same MM road has passed away. He was a lovely gentleman whom we had come to know during the trips to Lincoln County and more so during the recent rounds of Velcade Chemotherapy (both having the same regimes). This gentleman was the subject of my poem “The Man With The White Knitted Hat” which is shown below in a recent post. It has saddened as both very much and we send our heartfelt condolences to his dear wife. "God Speed Keith, your journey with MM was all too short"

My Heart Grew by Jo Moursi

2010-07-06T17:24:00.011+01:00

A hauntingly beautiful song written, played and sung by Jo Moursi is now available to download from itunes - all proceeds are going to Myeloma UK

http://itunes.apple.com/us/album/my-heart-grew-single/id379506283

Time For A Little Update I Feel.

2010-06-26T10:48:00.013+01:00

After consultation this Thursday it has been jointly decided to adopt a wait and watch policy after the poor response from the three months treatment with the Chemotherapy drug Velcade.It was not successful for Hamada only reducing the PP(M-Spike) by 4 and since the finish of treatment this is now back to a whopping 16.9. It was sad that after twice weekly trips for the Velcade and sometimes many more with transfusions, when platelets dropped to a very low 22 and with clinic visits also to monitor kidney function it was indeed an exhausting time for Hamada.

Current readings:
Cret 342 - HB 10.1 - WC 2.4 - PP 16.9 and Platelets a whopping 69(remember they were 22).

Although these readings look awful they are not that bad for Hamada and his Doctor used the word stable, certainly a word not heard for many months! Not a word I would use but there we go. We are to return in four weeks time and the plan is to start Revlimid when after close monitoring they deem it the right time. The worrying high PP does concern me so, I spoke to the consultant about this but he is adamant that Hamada needs time to recoup before continuing his fight. While I respect this, they have assured me they will monitor very closely indeed. It's not satisfactory, still what really is with MM nothing that I can see! Hamada is his always cheerful self, the most delightful patient and as the picture here shows a very much loved Grandpa. My best wishes to all who read this.

Manu and Grandpa.

The Garden Swing

2010-06-21T08:56:00.003+01:00

We swing together you and I
in that old shaded place we love,
peaceful sweet smelling garden air
that gentle breeze that tickles hair,
the yellow Iris in our view,
Oh how I love to be with you!
Tranquil sounds of garden spirits
the chirping of the evensong thrush
lavender blue scent comes through,
we swing together like children do.

This quiet spot where we can dream
these special hours away,
amid the slowing of day ending
we talk of yesterday,

no more is needed for you and I
we know that time is short
and so we talk and dream and think
of what this life has brought.

We dream together
you and I,
on this old garden swing.

Photo: from “Hemingway”
All Rights Reserved.

Tears At Another Table.

2010-06-03T08:41:00.004+01:00

It was an eternal wait that day
a long perpetual tedious episode
an abuse on the senses,
the faces filling the clinic suite
sitting too close together at tables that encumbered,
all appearing the same, all resigned to their fate;
all stricken with disbelief.
I watched…

Can you put aside like dead flowers a mind that is full of fear?
Can you not feel the pain of those set faces that await
the ‘clarion call’ for news no one wishes to hear?
Can you relentlessly show that crumbling smile?
Can you quieten the beating of your own heart?

I watched the woman sitting opposite me, a reflection of myself,
sitting beside her Man, worry etching her face,
quietly waiting the prophecy that could change their lives,
was she to receive news that would set her Man free?
Set them both free!

I watched…I watched…

I watched this fragile life snap and break,
I watched those tears at another table…

All Rights Reserved @ Susie Hemingway 2010

* NB After being on Velcade and Dexamethasone(80mg weekly) since February 22 2010 Hamada's Para-Protein (M-Spike) has only dropped to 15 He is to have a few weeks break and then start with the oral chemotherapy Revlimid.The fight continues.

May Days In Our Village

2010-05-29T11:21:00.011+01:00

Sunlit shafts streak in rays across celestial blue skies,
pink fluffy pendulous blossoms wave their clusters in the breeze,
the vivid startling green of spring appears.
Lucky are those who see this sight of approaching summer,
the russet copper tones of the Lincoln Reds standing proud and in our view.
The old bent ivy entwined gnarled trees start their fight for a few covered branches,
the lavender coloured lilac returns once more to please eager eyes.

A daily delight for you my love as this season returns once more, this quality that does not vary,
bringing a stillness to the land, gone are the painful gales of Winter.
Something strong, something constant and unchanging,
something to entice you from your bed...
Your wish to see these jewelled days has been granted.

Was he listening when I called to him?
Did he paint this picture just for you?

*Lincoln Red – A breed of cattle. May 2010.

All Rights Reserved -

Getting Smaller But With A Joyous Heart

2010-05-24T12:58:00.014+01:00

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How wonderful the weather has been here in the UK recently. Several wonderful sunlit days and temperatures on Saturday reaching 28c and a weekend that was hotter than Corfu! It was a real social weekend for us, with youngest Son Yousef(Jo) arriving on Saturday evening just as I was finishing a lovely Safari Supper in the village. I'm sure you know the type of thing, you all start together in one house and then informed where you will have your starters, after you have enjoyed that, you are told where to go for your main course and then every group ends up together in the final house for the desserts, cheese, biscuits and coffee. It was a warm balmy evening and so lovely to walk the lanes of our pretty little village, everyone going in different directions and passing each other again as we changed scenes. The organizer cleverly selected the houses I would attend, close by to our home, so for me on my walks to the next part of the meal, I was able to check in on Hamada. He is not well enough to attend this type of social occasion, so he chose to stay at home with very special supper tray. We could also kept in touch by mobile throughout the evening and we also have the wonderful 'Link-Line' alarm system fitted, so he wears the special pendant that will call anyone on his list immediately, should he feel unwell or need help. A wonderful system which allows me to relax some.
On Sunday which was again a very warm day, we had a lovely roast beef lunch at our village pub. Jo driving Hamada the little way, in his rather sporty car with the roof down, which Hamada so enjoyed (see Photo).
The other photo was taken during our meal and it saddens me very much to see how small Hamada has become. Of course I realized that before and am aware it's the nature of this beastly illness that has robbed him of 6" in height but recently he has become so much smaller in stature and seeing it clearly in this photo has confirmed these changes for me. After our rather good roast beef, we had a very lovely date to keep. One of the stalwarts of our village reached the grand age of ninety and we attended a garden party in her honour. Hamada made a supreme effort to be at this occasion as he is very fond of this particular rather marvellous lady.
The hosts of this wonderful event found Hamada a good seat under the shade of a large umbrella and with Jo's help he settled in very comfortably and managed a good time catching-up with all his old friends that through this long winter and last exhausting round of chemo, he had not been able to chat with in quite a while. What a change this lovely weather brings, we forget how important it is to those who are unwell. How it brought a sparkle to his eyes and such joy to his heart as each and everyone came to chat with him, almost as much a celebrity as the marvellous lady to whom Hamada had been so anxious to pay his birthday respects to.

From Small Acorns

2010-05-14T08:50:00.008+01:00

Written on the 4th anniversary of Hamada's diagnosis with Multiple Myeloma.

Recently I left a comment on a fellow bloggers site thanking her for her generous continuous support, not only to me but to many other Multiple Myeloma sufferers and their Carers. Many hours of her time must have been spent reading and entering her sensitive most knowledgeable comments worldwide. She does so with grace and clarity unstinting in her kind praise of my diary poems and has been following Hamada’s journey for a number of years. She always seems to pick just the right time for a comment to bolster flagging spirits and I have noticed her words when most needed on many blogs around the world. This to me is just the most perfect use of blogging.

When I first started entering my thoughts in the form of poems four years ago it was the only way to find an outlet for my overwhelming sadness and terrible frustrations at the changes that had befallen Hamada. It had been suggested by my Son whose understanding of my need to write my poems and his great knowledge of blogging guided me to this unique world. I could vent my feelings sending my words into the ‘blogosphere’ never thinking or caring if they would be read or not. Cleansing my mind very often of my innermost feelings, thus saving my sanity from the injustice of it all. I have spoken on the radio before of my need to record this time of Hamada’s journey with this most difficult of diseases. When asked has this been helpful to me, I answered to say with sincere honesty that yes this has most definitely been the case. What an amazing outlet is this most modern of all media. I have been writing poems since a young woman, so for me the easiest format was to place my poems in a diary form. Releasing as the need came, the words of my heart.

My how from little acorns grew the biggest tree! Overnight my blog was visited and within a short while I had found this wonderful support network of other MM sufferers and their wonderful caregivers. All seeming to want to read my poems and I in return was able to not only glean the information I so badly craved about this illness of Multiple Myeloma from their sites. To subsequently understand their knowledge, the complicated medical jargon and learn about the different circumstances of these wonderful people but also and most importantly for me, to acknowledge the pain contained in their web-pages. We very quickly formed a united front against this beastly cancer that has intruded into our lives and have over these past years formed great friendships, with new bloggers arriving weekly. We spur each other on in times of crisis and rejoice and praise together in the good times. We feel each other’s pain as if it was our own, can relate and understand the many problems that Multiple Myeloma brings. How a kind caring word helps a difficult day.

Many of us, Patients and Carers worldwide have also formed friendships via the much maligned network of Facebook, where we reach out the hand of friendship daily, supporting each other where we can. For me this is so much better than the psychiatrist couch or local Carers group which would be too difficult to attend when caring twenty four hours a day and when time is so precious.

Of course poetry is not for everyone and certainly my poems of love cannot possibly be to everyone’s taste but in the years I have been blogging, much to my amazement I have never had a nasty or inappropriate comment, not a single one; and this week my first web-blog reached fifty thousand hits. I would never have believed the whole new world that has been opened to me through a few simple poems. I thank the many internet friends who choose to follow our journey and allow me to follow theirs. Not a path I would have readily chosen but Life with a capital L threw this Myeloma our way, bringing many in the same position with their friendship to offer, some joy amid the sadness. I know my Family, Myeloma friends and their Caregivers completely understand that for me to complete this journal successfully; I must always write my poems as a true recollection of this time. They must be an accurate account, so this does not always make for easy reading and for some who find them too sad, I know they won’t be read. For the many who send emails and place their lovely comments on my blogs, I thank you. For I also know that many find them moving enough to release what I know have been called ‘healing tears’. If this helps just one person in some small way to continue forward, refreshed to yet another day, as it does for me when the words escape from my mind, then I consider it a worthwhile therapeutic exercise. I am aware that for many, writing of love and personal feelings is difficult and somewhat embarrassing, although this has never been mentioned to me. I am not so insular as to not understand this and it is a selfish purgative act so entirely helpful to me and after all was the very reason I started these blogs in the first place. Many of my poems are sad but we have over the years enjoyed so many happy and immensely joyous occasions and I have tried to capture these too especially in my earlier poems.

Using this most modern media to vent my feelings and save my sanity has brought many rewards but mostly it has been the link-up of this simply wonderful group of kind and caring individuals who are all following the same path as me.

To the wonderful lady whom I mentioned at the start of this article, who has the biggest caring heart and provides such a service to those who are often in a sad and difficult place I salute you.

To the wonderful folk doing the very best they can daily for their families and loved ones and in the continued fight to help with the individual knowledge gained which we all share, in the hope a cure for this most wretched illness will be found, I stand in praise of you.

With loving thanks to my supportive family my special girl and men friends who never ever fail me.

Taken from: “Small Acorns “– written on the 4th Anniversary of Hamada’s diagnosis of Multiple Myeloma. May 2010.

Copyright @ Susie Hemingway 2010

Under A Lovers Gaze.

2010-05-10T08:31:00.007+01:00

Under a lovers gaze stoic and stubborn
I fight for you,
in watchful waiting the power of my mind
spurs me on…
The tiredness of these determined efforts for you,
to strive is hard to do.
With strength needed as not to succumb
I walk on and on,
for there can never be amongst this pain
nothing left for you ?

Don’t ever think I do not clearly see
for if only my eyes could shut out all,
to mar, inflict distress, destroy the purity of,
impair, fatally ruin – All this !

Through my smiles, the anguish of my heart,
flows in time with this wretched beast
as it continues it’s wicked path.

Under my lovers gaze, I fight for you.

*“There is freedom within
There is freedom without
try to catch the deluge in a paper cup,
there’s a battle ahead, many battles are lost”

*Extract from the Song “Don’t Dream Is Over” by Crowded House Written by Neil Finn 1987

Photo courtesy: Matt Rutherford @ www.mattrutherford.com

© Susie Hemingway 2010

2010-05-07T13:15:00.002+01:00

It was a sad day for us both yesterday which brought bad news that Hamada is just not responding well enough to the chemotherapy drug Velcade. With just eleven infusions received since starting in late February and many stops and starts along the way due to a chest infection, severe reduction in neutrophils and platelets, it has been hard work for him from day one. Now again the next and what looks like the last cycle of four Velcade infusions- unless a miracle happens- will be supported with Filgrastim 30MIU/05 injections started yesterday and continuing throughout the next four infusions. Hamada’s Doctor at Lincoln informed us that a very poor reduction of 4.5 in para-protein level after eleven infusions is really not good enough and is most unlikely to make the 50% reduction needed to continue. Yesterday neutrophils were an alarming 0.68 and PP still at 14 !

So dear family and friends unless another miracle happens and we’ve had a few, Velcade will not be the wonderful elixir we so hoped would work for dear Hamada.

For Nancy by Susie Hemingway

2010-05-06T10:43:00.024+01:00

Just recently our dear blogger friend Nancy of www.lacootina.blogspot.com lost her short fight against Multiple Myeloma. There is no way to say just what an amazingly brave lady she was. So many of our MM blogging world will miss her writing terribly, I know I will.

For Nancy

Our hearts are sad for Nancy
a loss in which our hands would love to reach
across the miles of space to say goodbye,
we wish our eyes could see your words as daily missed
the spirit of brave trials in life lived with such pain,
in beauty of that lively energetic soul engraved within our minds
our hearts are sad for Nancy.

You found such laughter in a testing world
displayed in warmth that radiated upon your page,
filling our private worlds for us to read.
We loved the way your smiles and rants lit up our rooms
wishing for tomorrow’s sun, that could not be.
Your bravery as God enfolded you within his arms
for sure you are his special angel,
but our hearts are sad for Nancy,
our hearts are sad for Nancy...

Never Forgetting How Far We've Come !

2010-04-27T13:15:00.019+01:00

Never forgetting how far we've come I've posted the above photo today showing Hamada when he first come home from Nottingham City Hospital after his Stem Cell Transplant. This was in late 2007 and there have been a good few battles along the way since then. With his courage, good medicine and management of this difficult disease,Hamada has beaten many odds and now once again is fighting his way forward, this time just having received his 10th infusion of Velcade. A few stops and starts along the way with lowering of Platelets and Neutrophils, a nasty chest infection, some needed G-CSF injections and the wonderful skills of the phlebotomist at Lincoln County Haematology department, who's gentle care on extremely over used veins (twice weekly, showing how delicate this whole regime is)just constantly amazes me. Particular thanks goes to Jill who kindly uses paediatric phials for Hamada, these little things help ease the way, and with such gentle care, praise indeed.
We do not have the current Para protein M-Spike reading but are forever hopeful it has fallen again from the last 14.4 marker.
Bloods are holding: HB at 9.3 Neutrophils at 1.66 WC 3.1 and platelets at a great(for H)47! Kidney function is now 18%.
The journeys are tiring at least twice a week and sometimes four if other clinics need attending and on Chemo days, the wait is long between blood taken and the results but it is a tiny weeny price to pay for any lowering of the myeloma burden and we feel joyful on the return from Oncology when success is had.
Although it is early days with the Velcade, Hamada is having no other side effects and seems brighter and with what I call his Dex face - looks better than he has for some time.
So never forgetting how far we've come, we forge forward with hope that Hamada will reach his 50% reduction target after the next six infusions and so be able to continue according to the NICE UK Ruling.

Addendum:
Hamada completed his 11th Velcade on Thursday but platelets dropped from 47 to 28 in two days, I spoke too soon! He received platelets again on Friday and feels much better again. A weeks rest then check-up next Thursday and hopefully continue the Velcade the following Monday. Onwards to success DV.

Just Quietly Watching by Susie Hemingway

2010-04-20T18:33:00.012+01:00

You watch your family well my love
with twinkling fervency of pride,
not much I’m sure escapes those beaming eyes
whose rays emit relentless joy.

The room is filled with noise and bustle
laughter amid the smell of pungent food delights
and scents of Capri Fig Frangipani
as candles burn long into the night.

Your efforts never go unnoticed not in my eyes,
burden of encumberment hampers movement,
such little comes now from tired voice
but eyes embrace it all.
Just quietly watching... makes you the man so tall.

My heart suspends this time as softly plays
the husky subtle pleading of Lamontagne,
good French wine is poured amid the illuminated sounds
of laughter as we count our blessings
of these vibrant days, bathed in burnished sunlight
of joyful laughter with you.

I glance across at your smiling face,
just quietly watching...

All rights reserved.
Written after the weekend stay of Patricia Caron Hennebaut.

They Do The Trick!

2010-04-15T19:50:00.012+01:00

Well the friendly G-CSF injections have done their work, Hamada is now able to receive more Velcade starting again with a reduced amount on Monday next. We are delighted to say that the Para Protein/M-spike is still slowly coming down and is now at 14.5 this means Hamada is just about on track to meet the 50% reduction- insisted by NICE after the first four cycles - with two more cycles to go and one extra Velcade push in hand.
There is also an improvement in kidney function. We are feeling a good deal lighter in our spirits and Hamada seems much better in himself, he does love to sleep a lot but is still smiling. He thanks everyone for their good wishes and always reads the comments so kindly left here. Thank you all.

The River Of Life. - An Update.

2010-04-09T09:15:00.010+01:00

The very complicated 'river of life' with the quality and careful balances that must be maintained for Hamada to continue with Velcade, is proving to be a really tedious task. As mentioned in an earlier post even before completing the first cycle of chemotherapy he had to omit the last of the required four infusions, due to a lowering of platelet levels. Then during the second cycle Hamada managed the first two shots then succumbed to a chest infection and having antibiotics for five days could not recieve any Velcade that week.
We managed to slot in two further Velcade infusions after platelets were given and then the 'river of life' let us down once again, with the neutrophils deciding they had also had enough. For the next three days Hamada will have the friendly G-CSF injections to chase those neutrophils out of hiding! The plus-side to that is we can do these at home. He must then rest from chemo for a further week.
Although we have Nephrology clinic visit next Tuesday and the Doctors check-up on Thursday it does make a fairly Hospital free week which is rather nice and a lot less driving for me. Rather a bonus really with time to prepare some good English food, as we are entertaining (if they are all cold free) number one Son and family for a long weekend which also includes his lovely French Mother-in-law.

Further to the review yesterday, Hamada's Doctor is reducing the amount of Velcade from 2.4mg to 1.8mg he also informed us that there has been a little reduction in PP M-Spike reading from 18.6 to 15 it is a start but we have a long way to go.

The Man With The White Knitted Hat.

2010-04-02T17:38:00.012+01:00

We waited the hours together,
us and the man with the white knitted hat,
pale and often slipping down in his chair
he looked desperately ill.
His wife sat tiredly and patiently by his side.

He joined us once again sitting opposite,
in the ‘chemo chairs’
the four of us waiting as if for a bus,
but really to win further days.
The skilled nurse attached the Cannula to his oh so pale hand,
difficult but finally achieved,
he smiled a weary smile across at me.
The jaunty white hat seemed to perch on top his shiny pate
far too small and not really doing the job it was intended for.

My heart ached.

I smiled back, while my man was busy
being attached to the life giving elixir
that would hopefully give them both extra time?
I offered up my usual prayer.

The man with the white knitted hat whose face was
waxy pale, glanced across at us.
His wife or carer I noticed had swollen ankles,
perhaps from the many hours spent caring and fighting
‘this beast’ that was trying to take her husband from her.

The vials appeared like a sunburst of golden treasures,
“it seems we are travelling the same journey” I said
“Yes, it’s a long tough battle isn’t it”
said the man with the white knitted hat.

I turned my eyes to see the beautiful slim brown hands
of my beloved, my Father’s ring adorning his right hand
resting on the heated pillow.

Then looking across at the pale transparent hands
of our new friend I noticed,
that the first two fingers of his other hand,
were tightly crossed.

How my heart ached.

All Rights Reserved @ 2010
Addendum: I learnt that this nice gentleman passed away shortly after this poem was written.

Shades Of Purple - A Jewel Perhaps.

2010-03-26T08:29:00.007Z

Are you a jewel?
Priceless exquisite, cut of flawless clarity.
A glittering seven carat white diamond perhaps?
A gleaming diadem of chosen stones or a
desirable vibrant emerald, of richly sparkling hues.
No!
For you are shades of purple…

Purple like the dark rings that surround your eyes,
Purple like the feeling of these past weeks,
Purple coloured days that were draining, not pink.
Purple coloured nights that stretched forever,
as purple as the scarf I wore today, for I was sad.
Definitely purple but no amethyst are you
a solitaire yes, a single flawless gem.
A most valuable priceless jewel and extremely rare.
A Jewel to fight as you do,
Yes! A Purple Diamond, that’s you….

All Rights Reserved @ 2010
Written with love by Susie Hemingway for all those who love and now “Shades of Purple – A Jewel Perhaps” is to be published by United Press UK in their new book “Reflections”

What A Roller Coaster!

2010-03-23T18:30:00.009Z

Hamada has been unwell for over a week with a cold which has now turned into a nasty chest infection. Our visit yesterday to Lincoln for his 3rd Velcade infusion in this the 2nd cycle, was curtailed when I asked to see the Doctor as I was so concerned about this cough and just how weary Hamada seemed to be. At Haematology the first phlebotomist had great difficulty in drawing Hamada's Blood and it took a good deal of time and skill to then achieve this(thank you Jill) It looked like Hamada was going to be admitted but the Doctor give him a good examination and prescribed antibiotics (augmentin) and after a series of tests, ECG, chest X-Ray he was allowed to go home. The Velcade has now been stopped for a week at least, such a shame as so far, Hamada has not been able to complete a whole cycle of the much needed chemotherapy. It is indeed a roller coaster!

Hamada Continues With Velcade

2010-03-17T10:06:00.024Z

Hamada started his second course of Velcade this week, his platelets have risen back to 33 and although having a bad cold, the Doctor after a good examination, deemed him well enough to continue. Coupled with the twice weekly Velcade, Hamada is taking 20mg Dexamethasone x 4 times weekly and a course of 21 days of Aciclovir. Each week before receiving the Velcade push a full CBC is taken, so we hope that his blood and most of all his platelets remain stable. He is experiencing some 'sweats' which mean a lot of bed linen and PJ changes. These sweats of course are difficult to distinguish between the cold and the effects of the Velcade, but with continuing normal temperatures which I take everyday, I am not overly concerned.

Hamada feels upbeat and cheerful and as the sun is now streaming in our windows and Spring seems well on it's way I leave you these little pictures showing the sheep in our lane having escaped from their field for a little walkabout.

PS: Hamada received radiated platelets yesterday which came all the way from Sheffield ready for him at 10.30 - excellent treatment from the Alex Medical Day Unit at Lincoln - great team there.

A Set Back

2010-03-08T20:46:00.005Z

Hamada has stopped Velcade after just three infusions as his platelets have crashed to just twenty-two. He is having a rest of ten days with another CBC on Thursday next, to assess the situation and see if he may continue.
A Visit from Grandson Manu for the weekend brought much joy to Hamada.

Addendum: A visit to Haematology yesterday, with a full physical check-up and a further blood test, now show Hamada's platelets have bounced back to 33, Hamada will continue next Monday (dv) his 2nd course of Velcade. Good news indeed.

A Visit To Oncology Is A Serious Affair - by Susie Hemingway

2010-03-04T17:48:00.007Z

People’s eyes tell their story
as sitting quietly deep in thought,
magazines remain unread,
heads often bow in contemplation.
A visit to Oncology is a serious affair,
the television that no-one watches
or at least in glancing view
doors that often open
but never seem to be for you.
Faces flushed in anxious stares,
no one likes sitting here
on daily wiped plastic chairs.

The receptionist whose eyes
seem not to engage,
that must be thinking of supper
with her lover or of special days,
perhaps of summer holidays spent
in some sunny Costa’s far away…

You wait thinking best thoughts and
then into the ‘hands clean zone’
weak smiles greet you there,
no holidays for the many connected
to their life lines,
some sucking lollies that cool the fire
that hopefully will cure all,
a visit to Oncology is a serious affair.

The “ding ding dongs” of bleepers
tell in never ending harmony
a different ‘chemo story’ for
those sweet worried faces
sitting here, some of fear;
their eyes resigned to all
that fate may bring.
I look at the signs around the suite
telling of special wigs and treats,
the cleverly placed plaque above my head
that reads
“God give me the serenity to accept
the things I cannot change”
so beautifully written in perfect
flowing Italic hand by someone
who perhaps also spent many hours in this room.

I smile across at the lady opposite me,
her face lights up but
her weary eyes tell me more,
she says “ I’ve seen you before,
it’s a long haul isn’t it? "
Yes” pretty lady with the pink ribbon
on the black scarf covering your head
“it’s a long haul but one we will win”
I shall look for her next week
and pray she is there….

A visit to Oncology is a serious affair….

A Chemo Poem - All rights reserved.@2010

To Fight Again - Thoughts by Susie Hemingway

2010-02-26T18:00:00.004Z

Late winter months as news imparts
the gravity of this new start
dear God as we begin this fight
in restless days and feverish nights,
as poison flows through damaged veins
please not let this be in vain…
Smaller smiles through struggling days
of waiting for the nausea waves,
understanding strange regimes
jab jab as harsh it always seems,
as draw for tests to go ahead
when all he wants is his fresh clean bed.

Perpetual hours that make me sigh
impatience that since child has always been
and now this purgatory of hopeful scene,
as tedious the walks I make
through lengthy corridors and doors of pain,
please Lord! let there be a gain.
How good the compassionate nurses who
bring solace to my broken warrior,
a smile or a tender word all make a difference,
I notice a gentle hand on his shoulder,
in their relentless comforting care.
I also notice many sitting there,
with their dreams of better days…

My mind whirls as the precious cylindrical vial arrives with pomp and ceremony,
to scientists far away who have tried to bring
with knowledge gained, further days.
It is received with hope and joy
but will it work to overcome?
for this Man who waits expectantly with those oh! so trusting eyes.

A Poem about Chemotherapy February 2010– all rights reserved

To Fight Once More.

2010-02-19T11:46:00.018Z

"The Journey"

Hamada starts chemotherapy once more, this time with the drug Velcade combined with Dexamethasone.
Velcade is a newer type of chemotherapy - at least here in the UK - an anti-cancer drug called a proteosome inhibitor. In the UK it is allowed on the NHS to people who have already been treated with at least one other type of chemotherapy (Hamada has received several types from 2006 until a Stem Cell Transplant in October 2007)
Velcade is allowed on the NHS for first relapse after a Stem Cell Transplant or in persons unsuitable for SCT.

Starting next Monday, Hamada will receive Velcade by infusion combined with 40 mg oral dex(over two days) this will be continued twice weekly for two weeks then 10 days rest and then repeated. He must reduce within four cycles or it will be withdrawn due to the enormous cost of the drug. Some people sail through the possible side effects some of which are very serious and so Velcade is not to be undertaken lightly especially when like Hamada whose blood is very damaged from previous treatments and his kidneys are compromised, it will be an extremely tough road to travel.
It is most levelling to watch as the disclaimer is signed, listing all possible side effects some of which, are particularly frightening but is there really a choice? Hamada is quite aware that while the Para protein (M-Spike) rises in such an alarming manner now at 18.6! something must be tried before more damage is done to his bones and vital organs.

Multiple Myeloma is not for the faint hearted. It was never a choice but we are ready together to once again fight this battle, we thank the patient doctor yesterday, for painstakingly answering my long list of questions and helping us to arrive at this decision and to those he consulted regarding Hamada particular case.

We also thank our dear family, friends and fellow bloggers for all the wonderful support given as Hamada continues his fight and his journey with MM. breathe...

All Is Love - by Susie Hemingway

2010-02-04T12:29:00.012Z

Love is a perfect note; love is a certain smile or a gentle touch.

It is the dripping juiciness of ripe mangos on a parched tongue

or the smoothness of rippling silk as it touches your skin

or perhaps the sweetest strawberry dipped in liquid chocolate?

Love could be the aroma of double espresso just before it reaches your lips,

or is it the smoky woody smell of a newly lit fire?

All is love.

Love is also the stormy greys of long worried nights

love is restless broken sleep that drains energy from your soul,

love is eyes heavy from sadness.

But love is also the ashen face that looks at you when days are bad and you are brave.

Love is you starting the fight once more as realisation arrives in your eyes.

Love is also the beautiful eyes of family members whose tender glances record their own story.

Love is the strong arms that support and guide your way.

Love is the dearest child who stokes your hair with such beautiful gentle hands.

Love is our private moments that make difficult days better,

love is that look across the room that says it all.

Love is all these things...

And all these things are love,
and you.

A Busy Time Once Again.

2010-02-02T10:16:00.012Z

Last week we visited Haematology at Lincoln for consultation and yesterday for further bone marrow biopsy/aspiration, further X-rays and now we wait the results. On Monday 15th the Doctors will meet and consult with Prof Russell from the Clinical Haematology Centre Nottingham ( Hamada's Stem Cell Transplant Specialist) with the view to Hamada starting Velcade. We will then return on the 18th February for their collective thoughts. As I have mentioned here several times it is not an easy decision to arrive at. Hamada has enjoyed two years three months since his Stem Cell Transplant with no Chemotherapy, a quiet life but a reasonable one. Now with his M-Spike/Para Protein at a whopping 18.1!! a decision must be made, the higher this reading the more damage will be done to his already fragile bones and organs. His kidneys, which at one time were at 6% are now holding well at 15% but still another reason to be very cautious. Velcade is a newer chemotherapy drug that Hamada has not tried before and is allowed here on the NHS for first relapse. Velcade is widely used in America, some patients doing very well indeed but there are problems associated with it - neuropathy and anemia being just two and with Hamada's very poor blood counts could be the greatest risk. A balancing act indeed but as MM has powerfully reared it's ugly head again, we feel we must wage war once more.

My Quiet One - by Susie Hemingway

2010-01-17T12:27:00.014Z

January 2010.

My quiet one besotted with sleep

curled and safely snug

through this Winter he makes no sound

in dreams of slumber,

as painful as this time for me

he camouflages 'neath cosy cover,

gentle soft in quiet ways

to waste away these snowy days,

no trouble or requests he makes

just smiles and very slow of pace

dark eyes tired has he
with legs that will not set him free,

these stormy shadows cast on weathered heart

I see it all... no blindfold for me.

Purple days that dwindle by

jagged and shredded that makes heart cry,

my quiet one content and free!

Lover of mine where art thee?

Silence Falls - by Susie Hemingway

2010-01-07T11:36:00.017Z

Crisp sparkling crunchy views across this linen land

trees bow beneath the snow laden branches

hungry birds swing and pull at fat-filled gifts that hang from frozen lines,

quiet is this life, quiet is this world,

such beauty in the stranger shapes of intrinsic white on grey

as silence falls and covers sadness like a soft downy wrap

comforting like the arms of angels protecting those we love.

This Winter harsh and cruel will not change much for us

it is a time to be together, a time for closeness and of warmth,

a time to renew strength to start with vigour our battle.

As crystals melt their prisms,

the brushstrokes change the white

that enhances the beauty of this land.

Happy New Year

2009-12-31T16:31:00.004Z

Wishing all that visit my blog "A Very Happy And Peaceful New Year" It is tough for me to say goodbye to 2009, as it has been more comfortable than the two previous years for Hamada and I hate to wish the days away, but we must look forward with strength and hope. Thank you all for your most generous and comforting comments and good wishes throughout the year. We had a wonderful Christmas with our family staying with son Jo and Laura in the Chilterns and visiting friends and family. Hamada was most content and enjoyed very much this festive time. Now safely home again we shall look forward to 2010 wishing all those facing their own personal battles, hope, courage and a peaceful time.

Not A Good Sign.

2009-12-20T15:06:00.006Z

As The festive Season approaches and most of the UK is covered in snow, we have further worries. Not a good sign this one, as once again the start of the severe nosebleeds Hamada has experienced twice before when the protein starts to rise. Most MM sufferers will understand Hyperviscosity. Hyperviscosity refers to an increase in the viscosity, or resistance to flow, of the blood. It is due to high levels of protein in the blood, specifically M proteins that attach themselves to platelets and interfere with platelet function. Hyperviscosity can result in:
Bruising
Nose bleeding
Hazy vision
Headache
Gastrointestinal bleeding
Sleepiness
Neurological symptoms (such as tingling or numbness in extremities) Hamada does not have any of the other symptoms except the bruising, nosebleeds and desire to sleep long hours but this is a vital sign that I have my eyes on very closely and I will be very watchful in the coming days.

A Journey To Make

2009-12-18T19:44:00.013Z

As nearly all parts of the UK are experiencing quite heavy falls of snow and looking very picturesque. We are turning our thoughts to our Christmas Holidays and a journey to stay and visit with our sons in the south of England. It takes careful planning with a long journey, making it as smoothly as possible for Hamada, not allowing him to become cold or overtired at anytime and with a bit of extra padding around him for his poorly bones and all his medications of course. So with a little thought and everything needed to facilitate this, we are starting to get excited to see our family and friends once more for the festive season. A treat for me indeed as I usually host Christmas here at home. We seem to have rather a lot of packages to fit into the car already, with some special treats from Lincolnshire.

It has been a lovely month so far, a very busy time indeed with the sale of my book "The Power Within" which contains fifty of my poems of love that is selling so very well and I would like to thank all of you that have supported this cause. It continues to be available via http://www.susiehemingway.com/books/ but will not reach the US now in time for Xmas, as it takes approx five days.

This week we had our Nativity Pageant which was held in the streets of our little village, something I wrote and directed and it really went very well, with approx one hundred persons present. A lot of work was involved with the building of the sets and some very talented prop and lighting men did an amazing job. It was so lovely to walk the lanes of this pretty place on a dry night, singing carols as we made our way to the five tableau's set along the way. Stopping for mulled wine or hot chocolate, chestnuts and tiny ice cookies for the little ones. It was a very crisp cold night and lovely to see all the happy carol singers carrying their lanterns and enjoying the evening entertainment. After fireworks and setting off a large chinese lantern taking our wishes for our loved one high into the starry sky, we returned to the village hall for hot soup and traditional mince pies. A really lovely festive occasion.

So my friends, our very best wishes to you, we truly hope you enjoy the holiday season and we wish you a Very Merry and Peaceful Christmas.

A Garden At Hemingway.

Time For An Update I Feel.

2009-12-07T13:19:00.009Z

Having been very remiss of late with no postings, time for a little update I feel.
As you will all understand life has been very busy indeed! Firstly at a most crucial moment,the publishing of my second book "A Power Within" my brand new laptop decided it was not happy to be working so hard for me, and refused to turn-on one morning. That really upset the apple cart! I was lucky to have saved the most vital information and all was not lost but a good reminder once again to back-up more often.
My book has really taken off, it seems there are many lovers of romantic poems and how generous people are in supporting this good cause. Not easy at this time of year and in the present climate but I know that many of the books sold are going for Christmas gifts, also many ladies are treating themselves to a little romance. It is so pleasing to know that there are many of you looking forward to curling up during the holiday season with your Christmas chocolates and treats and reading the love contained between these pages. Thank you for the lovely comments sent via my emails and here, telling me of your favourite poem and how much you are enjoying these poems of love in your daily read.
And So I thank you very much indeed, for this has now generated going into a second print, superb after less than a month!.

The wonderful Man whom all this writing is for, continues quite well, with a little improvement. WCC now at 2.1 Plat now at 54, and Creat 382 but the Paraprotein (M-Spike) is now 16.9! which we expected or thereabouts. No decision has been made to start Velcade, one of the only drugs Hamada has not tried. We had thought that perhaps this consultation would bring this. The feeling is still, that while Hamada is managing his quiet life with controlled pain and no other further symptoms, it would be wise to watch and wait a while longer. These past months have been so much better for him in many ways, a respite from the harsh Chemo drugs that pull him down badly. Although very weak he does manage to enjoy his days in a quiet way, is always happy, with seldom a down moment and just as amazing as ever. Now we even think of a New Year! who would have thought this possible at the beginning of this blog?

Never give up hope MM sufferers, even when given a poor prognosis and told the outlook is grim. So many are now proving the statistics wrong,giving them no credence. Many stories come to my ears of lives continuing well with many good and productive years. Keep strong and believe that with the wonderful new drugs that are now available thanks to good continuing research, that all will be well. My sincere wishes to you all and thank you so much for supporting MM.

A Power Within - fifty poems of love, is available via http://www.susiehemingway.com/books/

"A Power Within - Poems of Love"

2009-11-23T15:23:00.002Z

2009-11-14T21:17:00.005Z

A Power Within Now Available to Purchase On-Line

Link here http://www.susiehemingway.com/books/ to purchase this richly designed poetry anthology filled with Poems of Love in diary form. More than one hundred pages telling ‘our story’ Proceeds to Multiple Myeloma.

How Exciting.

2009-11-05T20:36:00.006Z

Later this month my poems are to be published in a book called “A Power Within” It is pleasing to see more than fifty of these poems of love, all together in a beautiful book with it’s rich coloured cover - not I might add, the beautiful photo I leave here for your delight today -and 105 pages, which would look beautiful adorning any coffee table. I am thrilled with the result of the proof and with the superb layout done by Matt Rutherford of http://www.mattrutherford.com/ thank you Matt. More news on the release date will be here later this month.

It Shines For You - by Susie Hemingway.

2009-10-28T19:01:00.011Z

Silver shimmering crest of light

that shines and glistens on special nights

but only seen by those who love,

for those who notice this moon above

fluorescing glow of softest light

that shines on waves in rolling flight,

this secret candescent light that holds

a special place in lover's souls,

when the flotsam of life is tearing at you

lift your head and see this view.

When life's foreboding ways do seek

to sometimes knock you off your feet

take your dreams and shake them loose

never stumble for you will see

this shining luminosity of moonlight free,

for on these magic nights of love

that glow for lovers from above

especially for those entwined souls
for secrets between them never told

tilt your head to gaze above

to see this gemlike moon of love...

Photo courtesy of Sally Leeves

"I Carry Thee" - by Susie Hemingway.

2009-10-18T22:36:00.006+01:00

I carry thee like the heavy rain drenched leaves cover the precious plants
I carry thee like the mother with soft-fleshed babe in arms
I carry thee on heavy days, when limbs are tired but heart is willing
I carry thee.
I think for you on difficult days when drug filled mind is fuddled and quiet
I think ahead for you with heavy heart filled with anxious thoughts of decisions that must be made
I think of you when struggles to move are hard and bones make creaks and eyes are dulled
I think of you.
I watch for you, I listen to your breathing, when night has fallen and stillness comes
I watch for you with hope you never stumble or fall
I watch for you to make that kiss you love, entirely right at night
I watch for you.
I dream for you that days will pass pain free and be filled with God’s blessings
I dream for you when watching Autumn leaves fall as trees again show their tangled limbs.
I dream for you that you will see the Summer sun, rise across the pastures green once more

I carry thee....

@ Copyright 2009

Photo Courtesy of Janey Johnson Photos: All Rights Reserved

~ Secrets Of The Soul - by Susie Hemingway ~ *

2009-10-15T16:33:00.024+01:00

In purple see the changing light
the stormy days to passive nights,
in secrets of the soul display
a campaign like tinders falls astray,
and yet, as seasons daily change
you adjust to fight on moving range.
In repetition all a part
this set-piece for you
that's learnt by heart.

I watch thee, I watch thee,
intrepid, fearless
and monumentally brave,
to eagerly face another day,
this gargantuan task,
in febrile waves you make,
the tiny steps you sweetly take.
This rape upon your ravished frame
comes back in haunting waves again,
this personal onslaught so powerfully dealt
in secrets of the soul displayed,
the campaign like tinders falls astray.

And yet in courage you edify
and make my heart to often cry...

*This Poem written in 2008 has been chosen this week, to be included in a new book of poetry called "Fact and Fantasy" by UK Poets, copies of which can be purchased from all good bookshops and also read through The British Library.

@Copyright 2008
All Rights reserved

Two Years Since Stem Cell Transplant

2009-10-09T21:44:00.009+01:00

Two Years Since Stem Cell Transplant.

On the 8th of October it was the two year anniversary of Hamada’s Stem Cell Transplant. We once again thank Prof. N. Russell and his wonderful team at Nottingham’s "Centre of Clinical Haematology" for their expertise and for securing these past two years for Hamada. We continue with joy at each given day and try to make everyday as special as we possibly can. Although many testing times have occurred during these past two years with many health issues. Hamada has quietly and with great dignity, gently taken great enjoyment at each day with his family. He never ever complains and deals with this most difficult illness with great courage.
In celebration I post here Hamada’s favourite Poem, apart from mine! (I’m jesting of course)

From the Springtime of Love by Khalil Gibran.

Love has no other desire but to fulfil itself.
But if you love and must needs have desires, let these be your desires:
To melt and be like a running brook that sings its melody to the night.
To know the pain of too much tenderness.
To be wounded by your own understanding of love;
And to bleed willingly and joyfully.
To wake at dawn with a winged heart and give thanks for another day of loving:
To rest at the noon hour and meditate love’s ecstasy;
To return home at eventide with gratitude;
And then to sleep with a prayer for the beloved in your heart and a song of praise upon your lips.

Khalil Gibran 1883 – 1931

Photo by Susie . Rights Reserved - 2009.

This Sunset - by Susie Hemingway

2009-10-03T10:30:00.030+01:00

Brilliant Sunset sinking fast
of pumpkin corals and scarlet reds,
slowly first, as watchful eyes
dream and melt in paradise.
We turn to stare at coloured sky
and watch graceful bird swooping by,
we listen to the palm trees sway
as sun kissed bodies feel close of day,
evening warmth on cooling skin
pleasures seem to merge within.

Sinking slowly, small cirrus streaks
enhance this beauty we love to seek.
Vermilion Ambers, Magenta hues
spectacular colours for me and you,
gentle sounds of ebbing waves
this rhythm and flow of life and days...
Why we seek this twilight sky?
this energy that makes us sigh,
that makes our shoulders rest this way
that always takes our stress away.

This colour of power, this colour of
might, this reason to live, this reason
to fight,
this Sunset watched with only you
delicious memories come into view.

With many thanks to Sandy Banks*
http://www.retiredforgood.blogspot.com/ for allowing me to use these very beautiful photos and for dedicating the lower rather special Sunset Photo to us both.* All rights reserved.

*Sandy said... Your poem prompted me to gift those precious moments as the sun slips down behind the mountain and sea - caught, but not stopped - to you and your beloved... I love your words that bring the essence of a season or a moment into very sharp focus. Thank you again....
All Rights Reserved@ October 2009

Update October 2009

2009-10-02T09:40:00.009+01:00

As all tests were returned or done last week, we were seen very quickly at the Haematology in Lincoln Hospital yesterday. This appears to help save time for the Consultant with his study of blood results and checks of readings etc and although this involves two journeys, quite long ones for us. It is more preferable than the normal long waiting time for results to come through from the labs. Having found an improvement here, now for the big moan. The rather small car park for the disabled which is nearer the department, was completely full once again( that is sad in itself) After driving round for a while I had to concede, that the only place I could find, was miles away from the clinic we needed to attend. Struggling with the wheelchair in and out of the car is one thing. I am very physically fit but still it was most challenging for someone in their sixties to then push up the long hill leading to the Haematology department and certainly impossible for someone a little less stronger than I! It often appears strange to me, that the clinic where people have the most needs, is the furthest away! Very bad planning indeed, I suppose I could have weaved my way through all the miles of hospital corridors and up lifts but even my legs get tired sometimes! No wonder so many frail or unfit people have to rely on transport to and from their appointments, costing a great deal more with escorts in and out, than it would cost to make more disabled parking spaces - ah! I feel much better now for that wee moan.

All readings were much the same - very little change on all counts, except the dreaded para-protein (M-spike) which continues to climb and now at 13.09. Still,the consultants considered opinion, is that as Hamada is continuing well with no more pain than is usual for him and his Kidneys are holding well, that with all things considered, he should still not start Velcade yet and enjoy this respite, we are to return in December. The Doctor says to enjoy this good quality time and we intend to do just that!

Next week on the 8th of October it will be two years since Hamada's Stem Cell Transplant and we once again thank Prof N Russell and his wonderful team at Nottingham's "Centre of Clinical Haematology" for their expertise and for securing these past two years for Hamada. We continue with joy at each given day and try to make everyday as special as we possibly can.

*The above Photo was taken On September 26 2009

Autumn Lady by Susie Hemingway

2009-09-24T13:00:00.025+01:00

She came rushing in, or though it seemed to me,
disbelief that this colourful Lady with her cloak of reds and golds
had already arrived, when I glanced from my window.
I must have been looking the other way!
but then we don’t count the days pursuing more important matters now…
As the relentless stricken battle appears once more on the horizon,
had she come to distract my mind or bring colours to my heart?

This feckless stunning Lady who sheds her clothes
and scatters them where she will,
like drops of tears in a template of sadness perhaps?
A powerful change of authority as restless and now incipient to decay.
Old roses fade and fall like shattered fragments of glass
from a precious mirror,
the hedgerows become bare, no more luscious berries
but still holding onto their thin strips of life.

Leaves, could they ever be more beautiful?
turning to deep maroons and burnished, glinting, jewelled colours.
Conkers appearing from their secret shells to fall in copper splendour
from the impressive stately Horse Chestnut trees.
We arrived, like we had just opened our eyes.

Another Autumn! who would have believed we would see this majestic
Lady together, dumbstruck once more at her beauty
but belligerently waging war on staying in our perfect peaceful Summer…
not for us, the rushing of time…

All Rights Reserved.

I Missed You - by Susie Hemingway

2009-09-14T22:03:00.009+01:00

I missed you, when the heated rhythm of Salsa
- that feels so like chillies when they touch
your tongue - drifted across the dance floor.
I missed you as this enticing music reached
my jewelled pinned ears.

Where were you? when the luscious sounds of
Sax blues, caught my needy toes
so carefully encased in high dancing shoes.
Where were those slim ‘sun touched’ hands that would
reach to twirl me to the dance floor.

Where was the graceful dancer, whose gentle persuasion
could spin me like a whirlpool, making me turn
and sway to the sounds of Latin beats and Bluesy tones.
Tell me, where were those magical eyes,
those sparkling rays of light, that always laughed with me.

Where was that smile, those breathy movements on the
dance floor, those feet that could glide and coax
the dancer from my soul…
How my heart wants to dance with you once more,
instead of standing alone when the music calls to me.

I watched the others spin and whirl but my arms were empty,
sadness for your charms that made me feel like sixteen again.
I was never a wallflower but she has found me now,
where were you… when the deliciously heated sound of Salsa
reached my ears… where were you?

@ Copyright 2009 Susie Hemingway.

Wallflower Photo: courtesy of Janey Johnson- All Rights Reserved

*This Poem Although Written About My Husband Hamada, Was Posted On The Day Patrick Swazey Died Of Pancreatic Cancer. Patrick was a wonderful dancer bringing much pleasure to many ladies who saw him in the enchanting film “Dirty Dancing” So I dedicate this poem to Patrick-may you continue to dance in Heaven- and to all lovers of dancing"

"It Was A Comforting Day" - Susie Hemingway

2009-09-06T20:39:00.010+01:00

“It was a comforting day” you said
skies of blue, white vapoury
scudding clouds lifting the
shimmering colourful kites
to the heavens in breezy skitsy way,
I followed your eyes
I tried to see your soul,
in quiet reverie as no one knows
the heart that pushes down the pain
in a day affirmative that popped
like champagne.

Laughter surrounds you
consuming and capturing this
mere moment but for you a life
so difficult and as fragile
as the bubbles in my glass,
breathe my love, live in mind forever
this sun warmed golden day
of perpetual joy,
paint these brushstrokes
on your heart, for life is now,
this time is ours
as precious and as beautiful
as the stunning mosaic sky.

My cares fluttered like the
swooping of the Kites
free and belonging to the skies,
intrinsic as the white opal swirls of the clouds
tossing my sadness into the wind
so carrying us forward with courage
to yet another day
refreshed and replenished
you glanced at me,
in soft light fading...it was a comforting day.

Copyright@Susie Hemingway 2009.
Photo courtesy of Matt Rutherford.

This poem is dedicated to Dianne and Vern West, Nevada, Arkansas USA
for their courage.

"It Was A Comforting Day" has now been selected by United Press for a new book of Poetry called "Spring Vision" to be published shortly.

"Calm Are The Seas" - by Susie Hemingway.

2009-08-22T10:17:00.010+01:00

Calm are the seas we travel now,
the sail is down
how tranquil is the ocean,
we drift past the deserted islands
with their scattered palms and
fallen coconuts,
we lay on the deck, with bronzed
skin and salty mouths
calm are our seas,
the soft magnolia smell of warm breezes
whispers through our hair
all is blue, placid and serene,
I am here with you, for once
essential as the mainstay
Calm are our Seas...

Photo: Personal Oil Painting - somewhere special in Oman.
* N.B. See Comments for Dedication.

@ Copyright Susie Hemingway 2009

It's Strange How You Know!

2009-08-14T09:12:00.009+01:00

Its' strange how you know as soon as the consultant says "please have a seat" Some how you sense this is not going to go the way you so wish it would. Even chatting to the very pretty receptionist whom we have come to know over these years did nothing to allay my fears. Although Hamada had his bloods taken very quickly on arriving at Haematology yesterday and the waiting for the results was really very short indeed. I found it so difficult to sit patiently and concentrate on anything. Hamada always sits so calmly and yesterday buried his head in an interesting 'Flight' magazine. I nearly always listen to something calming on my ipod or read, but yesterday found myself reading the same line over and over again, being an avid reader this is not something that normally happens to me I 'drink' words as fast as I can. For me these consultations get more difficult as the months go by. Well a couple of results had not change too much - we are grateful for anything good! - the Haemoglobin was a little lower at 10.1 the Bence Jones was pretty level on last time results at 0.04 and the platelets had even risen a bit to 51. Then doom hits you like a weight sitting on your chest, the not so good... White Cell count now at the lower 1.5 and the Neutrophils at a very poor 0.72! and the dreaded Para.Protein*(M.Spike) is now at an alarming 10.7 !!

We discussed again with the Doctor what plan of action would be next and how far we should allow the Para Protein to rise, before the next battle begins. This depending now on a second Para Protein test done again yesterday,checking and double checking.

The Doctor stills feels Hamada should hold out longer, as he seems well enough in every other respect, some pain in left shoulder, back when moving and Oh! so VERY weary. So the figure of P.P. (M Spike) at 20, was thought to be the bench-mark for Hamada to start with Velcade. This figure of 20 seems high to me? I do understand the need to balance between the very poor blood counts and the rising P.P.
The Doctor also mentioned Revlimid again and this would be their second choice of action. Both extremely harsh drugs that must be considered very carefully.

I am aware of the recent news reports in America about our National Health Service here in the UK. I would like to assure any of our American friends, that what is reported in your press and on television, is nothing like the care and attention we receive here. Our consultant and his team, are well read and very aware of all the innovative work that is being done at such places as Little Rock,Arkansas. They seem very well versed on all the latest medicines and nothing is being held back from Hamada due to cost. Hamada drug regime is approx forty maintenance drugs per day and one 60 micro gram injection of Aranspt Darbepoetin alta, per week. He has been spared nothing and for that, I am eternally grateful. I would welcome any comments on this, email or here, on the decision to wait until the 20 PP mark. Thank you good friends, who bother to leave comments here and for caring to following Hamada's Journey.

*Myeloma cells characteristically produce and release into either the blood or urine monoclonal proteins. Monoclonal proteins are referred to as either, M-protein, para protein or M spike. They are terms that mean the same thing.
The monoclonal protein is an immunoglobulin and in myeloma cells one or more mutations have occurred in the genes responsible for immunoglobulin production. Typically, the antibody function of the immunoglobulin is lost and since it is not performing it's antibody function normally, more and more are produced therefore causing an increase in protein levels.

What will today bring?

2009-08-13T08:20:00.004+01:00

It's a "what will today bring" kind of day...Consultation for Hamada with haematologist at Lincoln today. We'll take ANY GOOD results! Results of Bence Jones as well...for those who understand.

This Time I Spent With You - by Susie Hemingway.

2009-08-10T14:37:00.011+01:00

It seems to be like yesterday
this time I spent with you,
inscribed within my heart
rust gold and cobalt blues,
unfurled in beauty of this desert place
in infinite dunes that stretched for always
like endless domes diorama,
asking me to look forever not relinquish,
requesting me to see your life.

The warm winds of the Rub' Al Khali
blew gently with your love,
like a sacrament anointed
within the centre of my mind,
awash my heart no clemency
the secrets of your soul,
in whirlpools of the desert
that stole my heart as easily
as the lushness of sepia light.

We ran, and fell upon those sands
while 'drowning' in the heat,
It seems to be like yesterday
the sands beneath my feet,
it seems to be like always
in this bejewelled world of yours
it seems to be forever
the love from you that pours.

My heart stayed in the desert
and this time I spent with you,

this time I spent with you...

*Rub' al Khali Arabic الربع الخالي‎), which translates as Empty Quarter in English is one of the largest sand deserts in the world, encompassing most of the southern third of the Arabian Peninsula, including southern Saudi Arabia, areas of Oman and the United Arab Emirates. It can be cruel but it is breathtaking!

Copyright @ August 2009

"The Wedding Of Miriam And Hubert" by Susie Hemingway.

2009-08-08T11:06:00.016+01:00

My very talented Sister Jane, restored the above Photo which is almost one hundred years old. She lovingly worked-on this picture from the past taking approximately twenty hours to bring it back from something that you could barely see, to this very interesting and wonderful keepsake for our grandchildren. She has been a great support and advocate to me during Hamada's illness and enjoys reading all my "Poems Of Love". So it was without hesitation that when asked, would I write a second poem for her upcoming journal about " days gone by - a family history" I very quickly agreed. It is still, after all, "a Poem Of Love!" So here we have:

"The Wedding Of Miriam And Hubert"

The faces staring out you see
a legacy from the past
linked by love it seems to me
a marriage that will last,
this primed, set and ordered way
made this for Miriam, a special day.

The Ladies all in hats so fine
brought in boxes and decked in time,
dripping with flowers, covered in lace
see how the little lads know their place!
Brush your hair, pomade at will,
shine your shoes, bring Grandpa's pills!

Sparkling jewels on collars and cuffs
has Aunt Maud brought her muff?
our handsome pair have walked the aisle
a special breakfast in a while,
but now we must all look our best
for Hubert's 'heaven' in nineteen eleven.

Don't forget your gloves or cane,
dear God, don't let there be more rain!
bring the chairs for we must pose,
young Jimmy please to wipe your nose.
Are we ready in our places?
A little stern, for happy faces!

'Poof and Bang' the camera goes
who'd have thought the world would know...

* Pomade: A Scented ointment for hair or skin of head.

:Thank you to Gerald Tucker for the Family
Photo.
:Photo Restored by Janey Johnson.
:All Rights Reserved

This Fight Without Choice.

2009-07-24T14:39:00.010+01:00

It was never a choice was it?
it sneaked in and through
along and around,
this nasty wicked 'beast' that coursed
along the channels of our lives
it tangled and tried to spoil,
bent, broke, quietened and flawed
it tried to rob, steal if you may,
inflict, damage and take away,
it encumbered, hampered, distressed
and sapped,
this dark encroacher that went too far.
Still, it did not spoil or mar
love twixt us two
this fight...without choice.

All Rights Reserved @ July 2009
*This poem is dedicated to all Multiple Myeloma Sufferers and their Carers.

A Little Update.

2009-07-21T17:29:00.005+01:00

We visited Hamada's very nice Renal Consultant Ms Little at Lincoln County Hospital today, to receive the good news that Hamada's Kidneys are still holding without the need for dialysis. We were a little apprehensive as Hamada's eyes have been somewhat swollen lately and I did have some concerns. We also delivered the 24hr Bence Jones marker test to Haematology once again. Although his cholesterol is very high at 9 and he will now require statins, his weight has improved and although blood remains very poor - Ms Little jokingly announced that he has only 2 white cells! - and the cancer is high, we are still very happy with any good news that can be found in this daily battle. At the weekend, Hamada managed to join the 'The Big Lunch'* in our village, which was a nation-wide event with many towns, villages and streets participating. I felt this would be good for him to see all our friends and as we had family visiting for the weekend and the event was held outside, quite a safe event for him to attend. A thoroughly nice afternoon unfolded, the picture above was taken at this occasion.
*The Big Lunch = everyone brings a dish or two to make a wonderful feast and we all share and eat together.

"The Waiting Game" by Susie Hemingway

2009-07-05T11:43:00.009+01:00

Nothing now for you they say
they will not offer yet, no way
no action or depart from same,
it is to be a waiting game...
and so the dictionary spills to me,
tarry, await, bide but see,
expect and watch, kick in one's heels
but do not depart from daily pills.

Continue strong with courage they say
but 'they' don't live from day to day!
stand firm, remain, counter or sustain
is there justice to obtain?
grasp this power of resistance
strong to overcome, do not waver
build your fortress, this war for us
which will be done.

Dig in and fight to stop invade,
your courage will make another day...

"Calm Are These Days"

2009-06-20T15:48:00.010+01:00

Soft jade green and mellow amber
are the colours of these days,
soft green like finest cashmere
I'd wish to wear in special ways,
liquid amber of runny butterscotch
poured gently smooth on silky creams
calm like soothing sax at midnight
seems to be the current scene,
days unfold like gentle ripples, lapping
clear against the shore and you
as peaceful as the morning vista
that glistens across land we adore.

Calm and peaceful for a while
like soft vowels in lovers breath,
warm and sweet like feather touch
a pause infinite and needed
Oh! so very much...
Then days that came like brightly coloured
Peacock that arrived in view,
we sat together admiring beauty
no 'grey life' was meant for you!
Colours shimmering a Midas touch,
treasures of the purest nature
"thank you Lord" this means so much.

Soft jade green and mellow amber
are the colours of these days,
then turquoise blues of dazzling splendour
arrived for us along the way
like prismatic rainbow over Maui
or amber sunsets falling West
just as clear as morning dew
with glistening eyes - I drink this view.

All Rights Reserved @ June 2009.
Photo taken by Susie Hemingway
( The Peacock visted for three days )

Continuing - Update

2009-06-20T11:36:00.002+01:00

Hamada's consultation this week with his 'Dr Angel' at Lincoln County was thorough and certainly without time limits. Dr Angel went slowly through all the stats and very little has changed. Haemoglobin up a notch at a lowly 10.3, White Cells up a little at 1.9, Neutrophils up at 0.72 Platelets down again to 42 Everything else is about the same, but as we anticipated Para-protein is up again from 8.4 to 8.8 Bence Jones reading is now at 0.04.
The outcome is the same, we must wait and monitor. Just maintenance drugs daily but not including any Chemotherapy. Again the Consultant discussed Velcade and the newer Revlimid both of which Hamada has not tried, but still the consultant's considered opinion is not yet. Hamada remains very weak, sleeping more than 16 hours per day! but has in recent weeks made two celebration evening dinners out, so is feeling very pleased with himself. We are grateful for these peaceful calm days without the trauma of harsh Chemotherapy.

The Eyes Of Pride - by Susie Hemingway

2009-06-10T22:47:00.006+01:00

Brown they are you know,
big and shiny like Autumn conkers
fringed and dark charcoal smudges
emitting beams like fireflies,
seeing all but telling no one,
meditative powerful authority
once of lushness,
the eyes that could bewitch a maiden
now a little faded perhaps rheumy
one might say, yet could in a blink
seduce and tempt to lead astray...
the eyes that tell the story
the eyes that show their pride,
watchful ebony pigments that
twinkle indiscreetly like
magnificent coal diamonds,
templates of sadness
still, such infinite eyes of pride.

Hamada Makes It! - As Sure As....

2009-06-08T10:15:00.005+01:00

As readers to this blog already know I chronicle here, a continuous register of updates and poems telling of Hamada's journey with the difficult disease of Multiple Myeloma. A most complex illness to treat and stage, with at the moment, no known cure. Still for many people it can be managed well if diagnosed early. Hamada was diagnosed when the Myeloma had attacked his kidneys and was in eighty percent of his blood-steam. So you will understand his courageous battle with this disease.
Hamada was very keen that I record his progress or lack of, during this journey to perhaps help others. So you will appreciate that my poems must be and are, from my true feelings and watchfulness as the days go by. Hamada is currently out of remission but is not undergoing any Chemotherapy treatment at the moment,with only maintenance drugs prescribed, in the hope that he will become a little stronger to try again any remaining chemotherapy drugs. that he has not tried before.

So it was with great delight this weekend that although very weak and sleeping for best part of everyday, he managed to courageously find enough energy to join in Son Matt's 40th birthday evening celebration, at a very nice local Inn for a splendid family meal together. He had so desired to be there, was determined beyond all measure to make it... so 'As Sure As' with a little help from family members, Hamada made it to the Blue Bell Inn. He enjoyed so much this very important celebration although not moving much at all the following day and resting continuously since. Well done Hamada, I know what it took to manage this and I am so very proud of you Habibi.

As Sure As - A Lament by Susie Hemingway.

2009-06-01T11:07:00.009+01:00

As sure as the sun rises
in the East everyday
as sure as your smile
lights-up the room where you lay
as sure as this calamity
life robs in this way,
as sure as my anger
snags through this pain,
as sure as the worried looks,
painted on the faces of friends
I see, there will be no gain.

As sure as the rippling tide
ebbs again to flow,
as perpetual stride comes
in the darkness I know,
as soft light fading
to soothe for a while,
how pointless this shattered glass
I hold in my hand...
for as sure as faded petals fall
from the 'roses' on your face,
as sure as your dark eyes
keep looking for me,
I'll breathe and breathe again
so you will never see...

As sure as the gibberish words that I write
as sure as day, comes after night
as sure as this ache that grips at my heart.

As sure as....

All Rights Reserved @ June 2009

Photo: Courtesy of Matt Rutherford.

Finding Something That Chills!

2009-05-28T11:33:00.008+01:00

Hamada continues much the same, sleeping his way through most days, bless him. He is trying to conserve/find some energy for a forthcoming special event. Son Matt's
40TH Birthday, when the whole family will be here for a long weekend. We hope to make this a very special occasion and so we need Hamada, if he can of course, to be able to join us - at a very special place, for the evening celebrations. So fingers crossed for that.

I have recently been playing the new CD of Melody Gardot, this music of the 'sleepy Jazz type' that Hamada and I love, it seems to have such a relaxing effect on us both, we imagine dancing together as we did just a few years ago - see my poem "We Dance Again" below.

If you would like something to take your mind of 'horrid things' and I know many readers here do. Try the lovely sound of Melody Gardot and her new CD "My One And Only Thrill" Listen to the enchanting "Our Love Is Easy" and the sensual track of the named album, "My One and Only Thrill" and the very delicious "Deep Within The Corners of My Mind" - I so wished I had written that! The wonderful orchestral backing which is quite perfect runs through these tracks, so if you are stressed and worried, this is indeed, very 'good medicine' as it takes you easily on a much needed journey...

Susie's BBC Radio Interview with Judy Theobald

2009-05-21T19:33:00.010+01:00

You can hear Susie reading on the third anniversary of Hamada's Diagnosis with Multiple Myeloma "I Write for You" and also the full BBC radio interview on the Judy Turnbald Morning Show on, http://www.susiehemingway.com
Under the Categorie - Site News

~ My wonderful congratulation flowers shown above ~

Life Is Fragile..Love Is Not - by Susie Hemingway

2009-05-12T15:12:00.007+01:00

So spins our lives in turning chasms of change,
blurred and slippery as water
cascading over slimy rocks,
my wordless gesture in trouble times
invades your worried mind,
fiercely as the brushing hand to restless horse,
my smile confirms, to reassure your fretful gaze.
As hell as life sometimes appears,
in daily disclosing of newer pain,
my heart swoops and suffers,
my misty eyes my soul knows
life is fragile but love is not.

As birds black and shiny soar
to 'crow' in noisy rattle begin,
another nasty turn like sin,
to stab in pain, to etch within,
to reproduce in making bold this latest evidence,
dismissing in magicians wand, I wave again
I wave again...
To struggle and plunge I flounder there
impeach myself but always care,
frightened damp and cold
my misty eyes, my soul knows,
life is fragile, but love is not
love is not...

All Rights Reserved @ May 2009

Excerpt from United Press:

Your poem " Life Is Fragile - Love Is Not" has been recognized as one of the best poems this year and to mark this fact we wish to publish it to a new book called Whispers On A Breeze a showcase of the best work of a group of Poets. This book will be ready for publishing soon can be ordered at all good bookshops.

Up-Date

2009-05-12T14:19:00.006+01:00

Hamada continues comfortably, still sleeping for about sixteen hours per day. He enjoys all his meals and eats remarkably well. For some time I have been looking at the benefits of 'Curcumin' and the very encouraging documentation regarding this supplement for sufferers of many ailments, in particular Multiple Myeloma. Of course it is always a difficult choice to make when deciding to try any addition to the already large amount of maintenance drugs taken daily and the advise of consultant must always be taken into consideration. For many, these extra supplements do seem to help and we were very thoughtful and a little excited about something that could potentially help Hamada. The biggest concern was of course his ailing Kidneys, although much better than at diagnosis, are still a cause for concern. Also the greatest factor, his extremely low Platelet counts (44).
So today when receiving information from the Scientific Panel of a leading distributor of Curcumin here in the UK, confirming that this supplement does indeed have an anti platelet effect and the potential for exacerbation of low platelets,we have decided not to pursue Curcumin further.

Breath Of Life - My Partner - by Susie Hemingway

2009-04-26T14:44:00.019+01:00

Fresh blood falls upon our streets
like dark red satin, smooth upon a bed
wild trees blow and hang their limbs
as pain strews all living things,
still within, as snug as partners curl
upon a furry rug in fire glow,
my mind tells me you're safe
my heart knows you are there
you are the sunlight in my arms...

My heart impaled transfixed in fear
when world rocks life so bitter and cruel
this struggle for peace so gently brave,
in quiet times as I survey the scene
and in frightening moments of terror
come fragrant as a summer rose
thoughts of you, to clear my mind,
you are the sunlight in my arms
you are my breath of life...

"How harsh, how tough, these long days
how precious your honourable soul,
how undemanding how much you care,
this ready smile of a brave man
and as you fight for strength, this daily task
your right of sovereignty is quietly protected,
this stillness comes, our land is covered,
lives are changed."

But, you are the sunlight in my arms
Still you are my partner,
Still my breath of life...

This poem is dedicated to the Men and Woman of EMS/ Fire Services, Providence, Rhode Island. USA. and to all Medical Personnel, Fire Fighters and Police Forces World-wide, who have partners and loved ones waiting for them at home.
See: http://rescuing-providence.blogspot.com/2009/03/poetic.html

3rd June 2009. Have heard from Paul Embery, Regional Offical,London Region FBU, that this poem has now been circulated to all members of the London Fire Brigade.

All Rights Reserved @ April 2009

Hamada Update - 24 April 2009

2009-04-24T15:22:00.009+01:00

Some awaited tests came back yesterday for those who understand and like to follow Hamada's journey.
The Skeletal Scan clearly shows the L1, L2 and T8 collapse and now there is a small area showing in the pelvic area,which is to be expected but of course still very worrying.
The Bence Jones is holding at 0.03 but the Para Protein (M-Spike ) is up again, now at 8.4 but not at the speed of the past 3 Months.

The Bone Marrow returned at 5%. better than we had hoped for - was 80% at diagnosis in May 2006 - Stem Cell Transplant achieved to good partial remission in October 2007.
Still, there is to be no further treatment at the moment apart from the massive amounts of maintenance drugs daily, even though the M-Spike is rising...the consultants view is to watch and wait.
I would welcome any comments on these readings from those who understand. Thank you.

Our very best and heartfelt thoughts to all our friends and carers who read this blog, and are making with courage, the same journey as Hamada.

Through My Eyes - by Susie Hemingway

2009-04-22T17:21:00.019+01:00

The music, distant, dusty but ours from years ago...

fills my mind and soul

my toes in shiny heels do tap,
my face in smiles my hands do clap,

and through my eyes, absorbed and clear

such beautiful faces, sitting here,

these sparkling eyes, this crowded room,

so young, peaceful, handsome, so alive...

just enjoying each other, just being together.

I hear their laughter I place my hand on his,

through my eyes I see them here

through my eyes I see it all...

Indeed A Wonderful Weekend !

2009-04-22T11:45:00.021+01:00

Hamada and I spent such a wonderful four days with younger son Jo in the beautiful Chilterns, Bucks. Jo and his beautiful Laura, entertained and looked after us so very well. It was such a delight to do nothing for the long weekend and so many thanks to Jenny and Ian who helped Hamada to make this journey with help travelling, and all the necessary carrying of extra 'bits and bobs' to make Hamada as comfy as could be. Hamada managed so well, but still having to sleep once again after breakfast, enabling him to join the fun in the evening. It was a super time, some good shopping and lots of laughter for me with the girls and wonderful party times in the evenings with superb dinners - Jo being a consummate chef - and not having to cook a single thing the whole weekend, thanks Laura, was an extra treat. It was really special to catch up with family and friends, to see Rich and James once again, they had grown up with Jo and had frequented our family home in earlier years and are now young men. Thank you Jo and Laura, I am sure you noticed the extra sparkle in Hamada's eyes X

Hamada Continues Well At Easter-Time

2009-04-11T16:47:00.024+01:00

Photo: Easter Sunday Last Year ! - 2008.

Hamada is continuing well, and we plan to have a small Easter-time celebration at 'Orchard End' with a good Roast Dinner and some Chocolate Treats. Hamada is not well enough to join the wonderful Easter Breakfast which after watching the Sunrise at a local beauty spot, is celebrated together with friends at the Village Hall. Always a lovely occasion, especially last year with the sudden onset of snow!

This week we had a very comprehensive consultation at Nephrology at Lincoln, going over carefully all the drugs Hamada takes. Then a good discussion with the specialist Ms Little, her very considered view being, that Hamada's kidneys are just functioning enough without the need for Dialysis. Dialysis may just give him a little more energy but not enough for the dramatic change to Hamada's quality of life that would ensue, with this irreparable (for Hamada)procedure, the need also - if not done at home- for the four days per week, journey to Lincoln. This with all the other clinic visits, would be far too much for him to endure. So we are thankful that his kidneys are holding on. We believe this has been achieved with the very good amounts of water taken daily to flush through the proteins that prevent the kidneys from filtering waste products from the blood. When Hamada was diagnosed almost three years ago he had only 8% kidney function he now has 15%. We still await the results of the latest Bence Jones 24hr test, also the Bone Marrow Biopsy and the Skeletal Scan.

We wish our very good family, friends, at this special 'Spring Time' who with watchful eyes, continue to support us -how lucky we are to have you - and to all fellow Multiple Myeloma sufferers, a very "Happy Easter" or "Happy Spring Feast"

I Watch - by Susie Hemingway

2009-03-27T12:12:00.007Z

In watchful reverence as slumber creeps
Comes the silver rays that cast shadows on my walls
My pen doth scratch the paper,
In breaking silence comes my poetry by moonlight,
Rest quietly beloved, with your rendezvous in dreams
This daily plunder systematically steals your frame
But nought can rob your soul.
This modicum of peace, this repose in sleep.
I proffer my heart as my hand trembles in writing,
Just your breath faint and steady, holds my heart.
And as the clouds cross the quivering rays
Leaving my heart in darkness,
In breaking silence, comes my poetry by moonlight...

All Rights Reserved :@ 2009
"I Watch" has been selected to be published in a forthcoming book by United Press called 'Poetry By Moonlight'

A Second Opinion

2009-03-20T10:08:00.009Z

It was such an important Consultation for Hamada yesterday - as Para Protein/M Spike is now at an alarming 8.1 - we gained a much desired second opinion.
Armed with all our questions and with no time limits, we discussed once again, any treatments now open to Hamada.. Our Doctor Angel who had been studying Hamada's blood chemistry and massive amount of medical notes also agreed, that to try with Velcade at the present time is not an option. He also suggested that another drug combination, one that has not been tried before, maybe sought further on. Hamada's blood CBC is very poor and damage from any of these strong 'chemo' drugs, may do more harm than good, spoiling what quality of life he enjoys now. The consultant has requested another Skeletal Screening and a further Bone Marrow Biopsy. These will take place this coming Monday. So it is final that at the moment it is a wait and observe approach. The Doctor answered every question frankly and clearly which is how we like it. It was a good consultation and I feel that all is being done for dear Hamada.

" I Write For You" - by Susie Hemingway

2009-03-03T15:38:00.013Z

As sun doth melt the silver days
and fresh green buds do chase away
the remnants of these chilly days,
I write for you...
you sleep and sleep my only love
you miss spring birds and clouds above,
in dreaming slumber, days do pass, and
even though against the breeze
the fragile words do come to me,
still sleep stays on those lovely eyes,
for days are shorter dear for you
the circle smaller, in violet blue,
again the sun will find it's rays
to warm your heart and fill your days
and I will spend my time with you
in quiet gentle solitude,
till this day, my only love,
I write for you...
soon once again, dear God for me
you'll sit on swing, beneath the trees,
to listen to the buzzing bees
the rustle of the summer leaves,
then you will snuggle close to me,
when smudges of my tears
do fall, to stain the ink,
and you will sleep,
and I will write
my words for thee...

This Poem read by Susie on BBC Radio on 20 May 2009 during Poetry Week, can be heard, on: http://www.susiehemingway.com ( just scroll down, past the poem "Love Smiles" )

Copyright @ 2009

My Heart Goes Out

2009-03-01T12:39:00.004Z

My heart goes out to Teresa (TK) my friend on here, and on 'Face book' . Her dear Husband Richard, lost his fight against Mutiple Myeloma yesterday. Teresa has always been so supportive and so very knowledgeable, helping to guide many, on medical issues through her informative blog. Richard was a brave and courageous man who will be missed very much.

My prayers and thoughts are with you Teresa

Update.

2009-02-26T14:10:00.007Z

Hamada has continued quite well since the last consultation at Lincoln. He sleeps a lot, managing to get up for lunch, with a little siesta in the afternoon. He then enjoys to read or watch some television in the afternoon and evenings. He loves looking across the meadow from our windows, now the snow has gone and Spring very slowly comes once again to the Village. We have managed with some great help from our dear Brother-In-Law to visit "Orchard End" for lovely meals or teatime treats, cooked so beautifully by my sister Jenny, how lucky we are to have them here. I have been looking and reading about other treatments for Hamada and will ask for a second opinion at our next clinic visit. Thank you, for the many mails of alternative ideas for further treatment. I will ask about all of these and perhaps the right time to implement them, should the consultants think they would be suitable for him. I must ensure there is nothing more that can be done for Hamada. He is very content with his 'quiet life' is in no pain when sitting still or lying - his medicament's cover that - which is a blessing, but he does struggle with pain on moving. It is very difficult now to get him in and out of the car and then so much of his precious energy is used up. We now look forward to the next visit in early March from our children - they do lift our spirits so.

Life is fragile but love is not....

A Disappointing Consultation.

2009-02-11T11:41:00.007Z

It was not a good consultation for Hamada this Monday at Lincoln. A very disappointing CBC again, alongside the news that the Doctor does not feel Velcade is in Hamada's best interest. We were so hoping for the benefits of this drug. The Doctor is of the opinion, that Velcade is way too powerful for Hamada's already weaken state, believing it will do more harm than good? I will of course, see what a second opinion thinks, but at this time the doctor feels it is not an option. There is thought that Thalidomide may be used once again, to try to reduced the very high, now at 6.3 para protein (M spike) or as a 'last ditch attempt'! It seems he would prefer to 'manage' the Myeloma in an effort not to do further damage with even more strong chemotherapy. Hamada has accepted this, but it does not 'sit well' with me at all. Although I clearly understand what the Doctor is trying to say - and knowing this time would surely come along - I am by nature, a 'fighter' and find this the most difficult time of all. It is written across Hamada's notes that this terrible disease is now too hard to treat!
It has not been easy to write this post, as I am sure you are all well aware.

For those who understand these readings: PLT.now at 39(normal 143-332) HGB10.7 WBC1.05 NEU 0.58 and Paraprotein 6.3

So my friends "make everyday a masterpiece"...

All comments welcomed.