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.

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.

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.

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.

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.

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 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

To Fight Again - Thoughts by Susie Hemingway

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.

"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...