Susie Hemingway

A Power Within

Tag: chemotherapy

We Pretend ? – by Susie Hemingway.

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On August 16, 2010

In Love poems, Poetry, Uncategorized

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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
As 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…

 

Picture: Arab Warrior Leading A Charge by Adolf Schreyer

Another Miracle is Required.

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On May 7, 2010

In Health Issues, Multiple myeloma, My Family, Uncategorized

Patricia Matt Sandrine and Manu Visit - April 2010 014

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.

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On April 28, 2010

In Multiple myeloma, My Family, Uncategorized


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

The Man With The White Knitted Hat.

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On March 31, 2010

In Health Issues, Love poems, Multiple myeloma, Poetry, Uncategorized

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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
Addendum:  I learnt that this nice gentleman passed away shortly after this poem was written. He was  indeed a fine Warrior!

Hamada Update.

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On March 21, 2010

In Health Issues, Multiple myeloma, My Family, Uncategorized

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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

A Visit To Oncology Is A Serious Affair.

By

On March 3, 2010

In Health Issues, Multiple myeloma, Uncategorized

chemo photo 

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….

To Fight Again-Thoughts by Susie Hemingway

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On February 26, 2010

In Health Issues, Love poems, Multiple myeloma, Poetry, Uncategorized

 

Snow again In Feb 2010 007

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.

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On February 21, 2010

In Health Issues, Multiple myeloma, My Family, Uncategorized

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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. 
Tomorrow  Hamada will receive Velcade by infusion combined with 40 mg 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 most 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 even 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 stand firm and are ready together to once again fight this battle and we thank the patient doctor on Thursday, 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 journey with MM.

Breathe…

Today’s visit to Haematology at Lincoln

By

On January 28, 2010

In Health Issues, Multiple myeloma, My Family

For those who understand  Multiple Myeloma  and are following  Hamada’s clinical details the M-Spike(PP) is now a whopping 18.1 !! the higher this reading goes the more damage will be done to Hamada’s bones and vital organs which is the nature of this disease.

Hamada is to have another bone marrow aspiration (5th one in all) and a  further X-Ray on his back and pelvis next Monday  then on the 15th February the consultant will discuss at a  meeting with other Haematology Doctors and Prof Russell from the  Clinical Haematology Centre at Nottingham, with the view to Hamada starting Velcade which is a newer  chemotherapy drug and one Hamada has not tried before and is allowed here on the NHS for first relapse. This is not an easy decision to arrive at and must be weighed carefully against Hamada’s poor blood counts and his quality of  life now but as MM rears it’s ugly head once more,  the feeling is we must wage war with further Chemotherapy.

The Waiting Game.

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On July 6, 2009

In Health Issues, Multiple myeloma, Poetry, Uncategorized

“The Waiting Game” a new poem by Susie Hemingway is on: http://www.susiehemingway.blogspot.com

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