My Work Here Is Finished.

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

Let Me Not - by Susie Hemingway

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


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


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


Susie Hemingway December 2010
All Rights reserved.


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

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

Gone to Live with God.

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

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

The Start Of A Final Journey.

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

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

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

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

Night Vigil

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

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

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

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

Such A Difficult Time.

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

This Must Be An Honest Journal.

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

A Watchful Weekend.

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

Time For A Top Up.

After blood tests done yesterday at Lincoln County Hospital the results show that Hamada's platelet level is extremely low at 16. So this morning he will have a further blood test to check antibodies(I believe) and then his special ordered Platelets will come from Sheffield and he will receive these at the Medical Day Unit at Lincoln. A simply wonderful team there!
This transfusion will hopefully help make him more comfortable and halt the bleeding that can be seen in hundreds of little blood spots under the skin. Many on his face and even more on his arms and lower trunk. He will be at the hospital for at least three hours but this hopefully will save a weekend stay. Many thanks to our Jenny who has been assisting with another strong arm, bless you Jenny, what would I do without you X

Addendum: Hamada spent six hours getting transfusions today - on arriving his HB had dropped to 8 and his Platelets only 10 - he is back home now and feeling somewhat better.

Changes.

When I started this blog more than four years ago I promised always to tell how it is for a Carer of someone with MM. It was important for me that my poems conveyed a little story of the days that unfolded on this journey. Sometimes the truth of my feelings may hurt more than at other times. I try to think of other MM sufferers, I truly do. Then of course those that maybe hurt by my thoughts here, will not subscribe. So I continue through these most difficult days. The following two verses describe my feelings during a very lovely birthday weekend for Hamada. Our son Jo spent a special time with his Father, we had a celebratory meal together and all in all it was a perfect weekend. Except for one thing although I suppose I have always seen Hamada through 'rose tinted glasses'. I could now see clearly what I suppose others can see and have notice for some time, visual changes to my dear man's face.

Extract from "Changes"

The once thought improbable

is happening Darling Man,

I cannot close my eyes

to forget these brown eyes fading,
I cannot shut my mind for all I need

is to see your smile.

These brutal changes tear at your resistance

this beloved face is changing

dissolving and vanishing from view

but never from my heart.

I can at last, see this Beast Within.

Changes... So many changes...

All Rights Reserved November 2010

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

Beautiful mellow Autumn days spent quietly, enjoying precious time with good food and sweet music. Nothing terribly important to report. We are to meet the nice Macmillan Nurse who phoned this week later on this month. Hamada does not really need assistance yet from this wonderful team of nurses and I hope it will be a long time before he does but as they say it will be nice to have a visit, so the nurse may get to know him. I will have the kettle on ready for a cuppa together. This will also give me a moment to ask questions and further advice.

We are planning to visit Haematology on the 11th to get CBC’s done, in future I will be able to read the kidney results on-line and this has now been set-up. So a future plan seems to be taking place and in the meantime we are looking forward to Hamada’s birthday at the weekend and a small celebration, a planned meal at the village pub which he usually enjoys very much. The photos here are from “Hemingway” It is a beautiful Autumn here in this little Village in the month of November.


Photos: Susie's Collection at "Hemingway"

This Rollercoaster Life!

As swooping as the Rollercoaster

my heart hangs in fearful suspended news

that fills these 'purple days'.

Days that bring shattered dreams,

only the strongest mind can hold.

My laughter becomes an echo that teeters on the edge

as I snap and break at disclosures strewn around.

My heart bleeds to dissolve this anger

which knows no bounds and as unruly as my mind.

Soaring high into this shimmering mosaic sky,

I hang on like a child that screams into the wind,

as these punishing swoops, turn into views as

fragile and as consuming as this Rollercoaster life.

All Rights Reserved October 2010.

http://vap-news.com

A Rush For Treatment

For a short time now Hamada has been having problems with his toe nails and I have insisted he show these to the nurse at MM clinic. She recommended good massage to what first looked like dry and flaky nails. This week Hamada woke during the night in much pain, when I looked at his feet I could see that most of the nails on one foot and some on the other foot were curling, very inflamed and one toe looked as if it was turning black in colour. This immediately alarmed me. I bathed his feet in quite hot water rubbed them with E45 and a little antiseptic cream and bandaged the infected one. The next morning I called and made an immediate appointment with our local GP. He has now given Hamada some antibiotics - suitable for someone with Kidney failure and some thick antibiotic cream to be applied twice a day. He mentioned something about being common with MM sufferers due to a low defence against these sort of infections. Someone also recommend tea-tree oil so I will apply some of that also, in between cream massages. I was surprised at how bad Hamada's feet have become and it does seem to have happened quickly. I should have noticed this and feel somewhat guilty that it managed to get to a bad painful toe. Oh well at least I hope we have caught it in time.

I feel like hiding, just like the bug above, in my rose photo!

Oh This Rollercoaster!

Further to the post below: On Friday afternoon we received two calls from Lincoln Hospital, one from the Haematology Department and one from the Renal Care Support Team both informing us that Hamada's last cretinine blood level has lowered to 423 making his eGFR now about 12. Yes, a slight improvement! The Urea has also lowered from 18 to 15.3 (which is better)

The Heamatology Consultant now wishes to see Hamada in six weeks! he is sending a letter to confirm this even though Hamada had accepted it completely and was most agreeable, not to attend more clinics. So God willing maybe, just maybe, once the Revlimid and Aspirin leave his body, the kidneys may improve enough to continue with more MM treatment.

I am sure there are many who understand how hard these changes are to recieve from day to day. As a Carer of someone much loved, I go from being saddened to the core of my being, trying so hard to keep Hamada cheerful and with at least some hope. To being so elated that I spend my days dancing around like some demon mad woman attached to my iPod forgetting to buy Vegetables and buying Lilies instead! It is nobodys fault and I blame noone, it is as it is.

Yet, this rollercoaster of emotions is so very hard to deal with but I do so love being right about this, certainly for the time being at least.

If the Revlimid and Aspirin leave the body could it restore the kidneys enough?!!

The Peaceful Feeling Decisions Bring.

After a worrisome week and Hamada's well considered decision not to continue with more treatments certainly for the time being, which would now involve dialysis - see http://www.susiehemingway.com/ we are both feeling relieved and peaceful that this huge decision is over. We had what we believe was the final Haematology consultation today, unless a miracle occurs and we have had a few of those before. So with the Doctor and lovely Nurse Tracy present, we discussed all that was needed. It was a bittersweet consultation after all these years and with the last results from the second round of Revlimid, the Paraprotein reading continues to show a reduction, this time -4 bringing Hamada's count to 12 from the recent 21.7 It is a disappointment beyond compare that the failing kidneys which were the first reason to suspect MM in the first place, may well be the ending point also. Because of the suddenness of this lowering of kidney function, it is hard for me not to relate it to the Revlimid + Aspirin but I know of Revlimids great success worldwide and for some without kidney problems the lowering of the PP in just two courses really shows that this is a drug of success for many and may well have continued to reduce the Myeloma load for Hamada. One point to consider is that we all know that MM leeches calcium from the bones and this alone after all this time could indeed be the single reason Hamada's kidneys are failing again.

Still time will tell but I stand by my lay-woman's judgement, that it was the Revlimid and Aspirin that has compounded the damage. Further creatinine levels may in fact show this, as it clears from the body?
It is hard to take in the severity of how ill Hamada is, when I look at him there is no outward sign that has suddenly appeared! A tiny puffiness around his eyes but no swelling of the ankles, just a continuous need for sleep and a very tiny amount of energy. He is still eating reasonably well and always his cheerful self, dignified and eager to retain control of this beastly illness. As he has managed before with a very low kidney function eGFR (7) at one point and survived for these past four and a half years with a eGFR never being more than 17 at the highest point. Is it then not crazy for me to expect more months? I am aware of course that should the kidney function nosedive once more, then it would be a very short time indeed. Although we have finished all clinics now unless there is a dramatic change, Hamada's blood will still be monitored of course, with the first visit by the out-care renal team. A nurse will be coming here on the 25th of this month. I am now waiting for the last creatinine reading. Maybe I am 'clutching at straws' but this will in the very least, be most interesting! Keep well all.

Photo: Showing Hamada with his Angels - story on http://www.susiehemingway.com/

Not Good Days

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

Latest News.

Not such good news for Hamada this week. In the past few days it has be detected that Hamada's kidney function has taken a sharp downturn and in an effort to halt this as quickly as possible and thus the need for dialysis, Revlimid, Dex, and the GCSF injections have all been stopped, certainly for the time being. This has been a huge disappointment, as Revlimid was proving to be of some help to Hamada. He has only completed two cycles of this regime and all blood counts had improved a lot and PP also reduced. This has been an exhausting week for both of us and we complete it tomorrow with a further morning at Lincoln for a consultation with two renal specialists for their assessment and will up-date when we have further news.

If Tears Could Talk. - For Dianne.

If tears could talk as gentle fall

they gather all, in misty path that's made.

On flushed cheeks like warm 'soft nymph of sadness'

huge droplets fill sad eyes

as cleansing in their wake

this pain so deeply felt.

Whirlpools of feelings

from damaged heart and soul.

A loss that cannot be repaired or replaced,

these tears that bring clemency to my needs.

Rinsing glistening lashes, streaky as torrent falls,

a quiet private heart-rending washing

that completes to soothe.

Until futurity

this sacrament of release will return,

giving focus and a little courage.

If tears could talk...

their wordless perpetual out-pour

would denounce all pain.

If tears could talk...

This poem is dedicated to Dianne West who lost her beloved husband Vern, after a courageous battle with Multiple Myeloma in September 2010.

All Rights Reserved.

Hamada and Susie at Recent Family Celebration.

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

Three Years Of A New Life - A Carers View.

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

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

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

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

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

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

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

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

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

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

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

All Rights Reserved.

My Thoughts Today.

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.

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.

All Rights Reserved @ 2010

Photo from Susie Hemingway's Collection.

Further To The Post Of Yesterday.

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.

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

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.

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.?

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:

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

All Rights Reserved.

The Gentleness Of Your Silence - Susie Hemingway

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...

All rights reserved 2010.

Sadness At News

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

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

All Rights Reserved 2010

Time For A Little Update I Feel.

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

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.

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

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

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

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.

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

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

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 !

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

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!

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.

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.

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.

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!

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

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

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

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