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.