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The following poem was found in my Grandson’s text book at the end of term. Nothing has been changed, it is just as it was written. It brought tears to my eyes when reading but I wanted to share it with you.

Emmanuel (Manu) is 10 years old.

My Grandpa’s really kind,

I knew he’d go to heaven,

since he got bone cancer,

when I was seven.

I think he laughs at any joke,

whether it’s good or bad,

and if he thinks it’s really good,

he laughs like he’s gone mad!

Usually he has to sleep,

since he needs his rest,

so when he is awake

he’s always at his best.

Before he ever got ill,

he used to play with me,

I used to kick a football

to him and back to me!

Alas not anymore,

we only laugh and talk,

it doesn’t stop me loving,

even if he can barely walk.

“Wishing you a very Happy Birthday and a wonderful Blog Party at www.soulaperture.blogspot.com  Enjoy your  birthday treats  Christina  from www.susiehemingway.com  and

http://www.susiehemingway.blogspot.com    in the Lincolnshire Wolds UK.”

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.

I’m sure the sky appeared bluer that day

tents and stalls were assembled by dawn,

a bustle took over the village

and in their own unique way

all manner of games, raffles and prizes

appeared for this, the  Annual Village  Fete.

“Teeny tots with sparkling eyes

As all around delights they spy

Laughing faces full of joy

Gleeful girls and skipping boys

Little children with winning toys

Raffles and tombola stand

Bouncy castles and a splendid band!

Sunlight streams through covering trees

A Village Affair for you and me

Jars of jams and chutney to buy

Balls to throw and win a prize

Just to be in summer glow

And watch this Village come and go

Fifty pence will bring a chance

To win the lotto in a glance

Pretty dresses, summer hats,

Throw the balls and make a crash!

Time to sit for cup of tea

Cakes to choose, now let’s see?

Strawberries and cream on scrumptious scones

No coffee walnut will be the one!

Nothing less that I can see

A Village Affair for you and me…”

All Rights Reserved 2010

It’s been a good week so far, one of those special weeks that  conjures up so much that is English. The start of  Wimbledon with fabulous tennis and new records being broken, the epic saga that culminated in the longest ever match and the most aces served in beautiful sunny weather with high temperatures, so perfect with the abundant strawberries and cream being served  and a real battle for the contestants and their ten hours of tennis!  The special visit of our dear Queen to Wimbledon, for the first time in thirty three years.  She looked marvellous in turquoise blue and matching Edwardian style hat, just incredible at eighty four years ! God Bless you Ma’am.

More fun with England redeeming themselves at football in South Africa with a win at last! Hamada enjoying every match he can manage to watch between his long periods of sleep. Perhaps I will keep my flag  flying at  “Hemingway” a little longer!

Days are so precious and making them special  is a constant joy, little  things that make someone who is very poorly enjoy these days is so important. The Family all came-up for the weekend with Sunday being Fathers day. “Hemingway” was filled with laughter and chatter, just as it should be and just as we like it. We enjoyed good meals together, watched more football and enjoyed a game or two of Scrabble. We finished our lovely weekend with a good Roast Beef Lunch at the Village Pub. Hamada enjoyed all this too.

Now back to reality today with a consultation at Lincoln  to see whether Hamada is well enough to start Revlimid another Chemotherapy drug,  after the disappointing  three month course of Velcade which did nothing to reduce the Myeloma load in his blood M-Spike (PP) now at 14!   I pray that he is well enough to continue to try.

So many days are important not just the ones that are life changing or life saving but all the ones in between.  These wonderful warm sunny days of June, yes every single one…

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.

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 4^th Anniversary of Hamada’s diagnosis of Multiple Myeloma. May 2010.

Copyright @ Susie Hemingway 2010

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 “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  now 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.

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 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 once again. A weeks rest then check-up next Thursday and hopefully continue the Velcade the following Monday. Onwards to success DV.

Supporting www.myeloma.org.uk

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 @ April 2010

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 tough long 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

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….

Written with love by Susie Hemingway for all those who love.

“Shades of Purple – A Jewel Perhaps” is now to be published by United Press in their new book “Reflections”

All rights reserved @ 2010

Hamada continues  quite well with the Velcade infusions twice weekly, plus 20 mg of dexamethasone x 4 times weekly,and also the aciclovir for 21 days, this information is really for anyone following the medications Hamada is receiving and I know there are a few.

Hamada is having no other worrying signs other than a chest cold which is without temperature but still a bit concerning as it is taking a good time to leave him. I shall mention it tomorrow when we return for the blood tests and the further Velcade, ( if it is permitted and  the bloods are good enough). Hamada received radiated platelets last Friday, some may wonder why radiated, well that is because he has had a Stem Cell Transplant and  any blood products received must be pure.  The blood comes to Lincoln from the Sheffield Blood Bank and we are continuingly grateful for this wonderfully good care.

It has been a long difficult week with the journey back and forth to Lincoln and the interminable waits between the blood taken, results going to the Oncology Unit and then if alls well, the Velcade given, a wait of three and half hours.  So very tiring for Hamada and also for me to a much lesser degree. Still we fight on, with the hope that all will be worth it and this drug one Hamada has never used before, will reduce the Para-protein and thus give Hamada a good break from chemotherapy once more.

There was a discussion on the List- Serv Acor this week about using the term ‘beast’ for the illness of Multiple Myeloma.I think my poem The Fight Without Choice shown below,  tells how I feel. For although the word may be sad to hear for MM sufferers, to me and I suspect for many Caregivers who are also badly affected, it is indeed a beastly intruder. I have received so many praising emails this week regarding this poem,  some  I have shown in the comment section here.

Be well dear Sufferers and your Carers, for it is our friendship and our continuing courage that will see off this Beast.

The Fight Without Choice,

It was never a choice was it?

it sneaked in and through

along and round,

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 to far.

Still it did not spoil or mar

love twixt us two,

this fight,

without choice.

Copyright @ 2009