We now have the pain under control again and have this morning talked with the support team at Lincoln Hospital. The good advice from the Haematology Nurse has been most helpful and Hamada feels much more comfortable now. This severe pain is to be expected at this stage of the Myeloma, but we must endeavour not to let the pain “take hold”. I am now playing some of his favourite music, his smile is back, and it’s a much better start to the day.
Author: Susie Page 28 of 30
It was a love affair
you and I
It was delight not virtuous
It was visionary
It was a moving nature
It was strange it was pure
but it was, a love affair.
you and I
It was delight not virtuous
It was visionary
It was a moving nature
It was strange it was pure
but it was, a love affair.
It was a love affair
you and I
It was quixotic, it was new
It was imaginative
It was romantic
It was sensual
but it was, a love affair.
It was a love affair
you and I
It was a passion
It was exciting
It was taking-up my life
It was everything
but it was a love affair ?
@ Copyright 2006
I was looking for you
when hot days seared my mind
and starlit nights were often kind,
when all those handsome boys danced by,
I was looking for you.
when hot days seared my mind
and starlit nights were often kind,
when all those handsome boys danced by,
I was looking for you.
When warm breezes brushed my cheeks
and I had studied for weeks and weeks,
when I could swim in warm blue seas
and honeysuckle were full of bees,
I was looking for you.
When I was walking along the shore
and knew that I could give no more,
when underneath my feet the shells
ground, and there my life was turned around,
I was looking for you.
On Autumn days which coloured red,
we laid together, in soft warm bed
when reaching through the sweet dusk light
I held you in my arms so tight.
I was looking for you.
I was looking for you when
crisp white snow did cover the ground
when my cheeks were pink
and yours still brown,
I was looking for you.
I was looking for you,
as I searched along the way
when you used that smile
that changed my life
that way,
I was looking for you………
@ Copyright 2006
Hamada is not so good today – the pain in his back is really bad – he is taking Oramorph – and today unable to get out of bed unaided. I feel so sorry that this is so, especially after doing so well with the ‘Harvesting’ last week. Perhaps all the sitting around and the long car journey has taken it’s toll. He will be resting and sleeping most of this – Father’s Day – I will shower him with as much love as I can. The two poems above are special to us, but today is a good day for them. Thank you all for your good wishes, it is a comfort to know you are all thinking of us.
We’re always there and never late
again the day we sit and wait,
thrice again we must believe
stem cells elusive, are for thee,
the nurses come for blood to take
to send to lab, a longer pray.
The swinging doors the patients bring
but my dearest one, no longer sings.
I look at medi-wash machines
I try to peep at path-lab screens,
results for ‘dear heart’ just this time,
a higher count would do just fine.
Some patients grim, it’s such a shame,
the counts not good it’s home again.
It’s not a lot dear lord you see,
to send the stem-cells straight to me
I’ll keep them safe, right by my heart,
I’ll hold them tight, then he won’t part.
We need them here just for him
please, dear lord, to help him win.
I look at pictures on the wall
don’t ask me what their called – at all,
the time ticks on, but slowly now
my heart in isolation, bows.
It breaks my heart to see his face
I hate to watch this turn of fate.
He’s patient looking at the door
which opens now, but brings no more.
We wait and wait as doctors pass
please give the ‘green light’ so we can start.
We’re tired now this fight is long
but we’ll not stop, they could be wrong !
Send back those lab results to us
and make them good, a million plus……
A big “thank you” to Sir Richard Branson who added his comments to my poem ‘You Elude me’ at 2.53 am today.
Thank you Sir.
Further to the Post below – Have just heard (17.30) from the Haematology Dept, at Nottingham City Hospital. Hamada’s collection today has yielded just 320,000 stem cells – which although is not very good – does now bring the total over the 2,000,000 mark – which is indeed good news. We now await the Professors remarks.
We have been at Nottingham City Hospital since Sunday evening, Hamada has now managed to ‘harvest’ a further 500,000 Stem Cells on tuesday. We are not so hopeful for today’s collection as the count was down again – as it was on monday. They will let us know later on today, when lab reports are back. It has again been so stressful – not the lovely nurses – they always do their best to make you comfortable – but the waiting is just terrible. We have spent a total of fourteen hours this time, in the clinic over the three days.. ( we would wait forever -if they would just come out !! ) At the moment Hamada has 1,800,000 not quite enough for the transplant.
Hamada is in pain again today but we are managing to get it under control. He really wants to join our house guests – Jen and Ian – at our village pub tonight, for some fun, laughter and a good meal with our friends. He says “you can carry me down, I’m coming”. he has started the GCSF injections for monday, and has now had four. Still smiling and never-ever complaining, but you can tell by his eyes that it hurts !!!! despicable illness, I say.
Dreams of Montazah.
He dreams of Montazah
the palace within his mind,
as he is quietly resting,
I know he goes back in time.
This splendid ‘Salam-lek’ palace
built high on hills above
this turquoise studded jewel,
secluded bay, entwined with doves.
Amid the palms, stands clearly
this monument of love,
this monument of love,
built from finest ‘red bricks’,
a blessing from above.
Smooth and graceful standing proud,
with white ‘najoods’ and sea around,
he would walk in verdant grounds,
in peaceful harmony, no sound.
The quiet of these gardens
lush all, 370 fed-dans,
would take his heart in a myriad walk,
his bare feet, on fine white sand.
He dreams of ‘Montazah’, the palace,
always within his mind,
this paradise inn of time,
he enters gates that keep the crowds at bay,
which for him are opened, every single day.
And when he’s tired of strolling,
I know just where he’ll go
he’ll leave gazelles and rock gardens
and the flowers, he loves so,
he’ll step across the water
to the island of all time
where classical statues never alter,
in plethora, there to stand.
And here he’ll fish or flirt !
or swim, in sunlit sheltered bays
and for a little while,
he remember all those days.
Montazah keeps him peaceful
I see that smile again, and when
he sleeps tomorrow,
he’ll go right back again.
@ Copyright 2007 -Hamada used to walk in these Gardens as a child.
Today we visited Lincoln Hospital again, for the pre-check for next weeks, hopeful third! ‘harvesting’. Hamada’s ‘Hickman’ line was flushed, full bloods taken and these results will be used if required at Nottingham Hospital. It was a quick trip, let’s hope this is a precursor for next week. Hamada is feeling quite good today, not moving very well – but the infection is somewhat better- by Monday I do hope he will be ready. Hamada starts the third course of GCSF injections tomorrow, taking two per day – lets hope they do the trick this time.
How beautiful this Summer day,
the colour of the flower,
I seemed to miss it all today
and often wished a shower,
to match my mood, I’d like today,
rain and thunder all the way.
The snow and hail, they could come,
and even lightning too,
If I could take your pain away,
A hurricane would do.
How beautiful this Summer day,
with not a cloud in sight,
and there you are
again in bed, putting up a fight.
The sun is blazing down the rays,
and when you turn and smile,
I’ll keep you with me, and that gaze,
and never miss the flowers
and if you think I love you less,
I’ll long for summer showers
How beautiful this Summer day,
the stillness of it all,
the sky is brilliant, almost red!
you smile at me, and rest your head.
So does it matter the flowers are out,
does it matter that their blue,
if I could take your pain away,
then this is what I’ll do.
For then the rays, the lovely sun,
the flowers, each and everyone,
I’ll keep you and that lovely gaze
then this will be my Summer day.
@ Copyright 2006
Lilies.
Do you remember long ago
you found that magic place,
where lilies filled most every room
and beds were dressed in lace
the men in polished uniforms
took bags and opened doors,
and the crystal of the chandelier’s
twinkled straight on marble floors
The majesty and splendour of
this, your special place,
was clear as sparkling water
that ran from fountain space.
You sat me by the sea-view
in a chair of plushest silk
the lady with the clear sweet voice
the harp, it’s gentle lilt,
you said my hair was “pretty”
and my dress was “just divine”
and then they brought us pink delights
and goblets full of wine.
The scent from all the lilies
that filled most every room,
could that be what was turning
my heart, amid the blooms,
perhaps it was the dark red wine
perhaps it was your face,
perhaps those gilded bronzes,
I remembered in that place
We walked on Turkish carpets
in rooms of ormolu,
along the ‘china’ terrace
admiring stunning views,
we walked along the waters edge
leaving sandals on the stairs,
still that beguiling smell of lilies,
I wondered where, from here
and as you turned and smiled
coming, face to face……
where lilies filled most every room,
and beds were dressed in lace.
@ Copyright 2006
Manu made this little paper boat for his Grandpa – It says Cancer – Boo and Hiss.
Poor Hamada – back in bed for the whole of this weekend, with yet another cold and now a chest infection. His very much reduced, white blood cells, affect his ability to fight off any infections. So he always succumbs easily. With the continuing severe pain in his spine – it has at times, been difficult to make him comfortable – he has been sleeping most of the time so now I’m really hoping he will be well enough to start his further treatment later this week.
Still, some excellent news from NICE in the media today, about the drug Velcade – thank goodness for that – I believe this new system will help provide many more Multiple Myeloma Patients, who need this drug, to receive it. – See More in Q & A @ www.myeloma.org.uk