Category — My Family

Music by Jo Moursi  is available to download, all proceeds going to research into  Myeloma UK.  Support a good cause and download,  let’s have some feedback too.

“My Heart Grew”- Single by Jo Moursi download from: http://itunes.apple.com/us/album/my-heart-grew-single/id379506283

“A  beautifully haunting  romantic ballad, written, played and sung by Jo Moursi”!

All Rights Reserved. July 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

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

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…

The above sketch was drawn by our Grandson Manu 9 years of age and shows clearly how well he looks closely at his Grandpa’s face. On the back was a little message and I am sure he won’t mind if I share it with you.

To Grandpa, I love you and I hope you see this every day and think of me. Remember to take all your pills and you’ll be OK!                  Buckets of  love, Manu XXXXX

How simple, uplifting and complete this little message is. Manu declares his love for his Grandpa, then states a fact or two, gives good advice,  and no more is needed. There is much love and thought  through the eyes of  this child. I wish life was as simple as this little note.

Note given: 31st January 2010

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.

Having been ask again by some of my readers “How do you manage to keep cheerful” I have again posted  a small piece I wrote about my feelings  on the 11th September 2008. Nothing has changed much during this time, yes  of course  I have very sad times and it is not always easy to find  strength when tired to help with mobility needed to care, but you do, and my feelings during this time remain the same.

11 September, 2008

On The Edge Of  The Cliff – A Carers Perspective

Rather a lot of people have asked me " how do you keep cheerful " and " what keeps you strong when faced with such a change to your life"
So what is it that gives some the strength to keep fighting and staying strong in the face of adversity?

What enables some Carers to give their best and their continuous support day after day, when for most of us, burying our head in the sand or turning to run, would feel so much better. Well yes, difficult questions to answer. I know how different it is for all Carers, of the problems that affect us all and that no two people are the same or will have the same approach when confronted with devastating changes, not only to their love one but very often to their own lives.

For me after the initial shock and my goodness what a dreadful shock it was, I spent many nights thinking of  how I would find the strength to deal and do my best with the awful changes that would befall us. Having only just retired and with both of us looking forward to a more relaxing time I had hoped for some new adventures, lots of dancing perhaps and certainly a lot more travelling.  Time for swimming, holiday time and plenty of walking together. Would all these have to change?  When Hamada in May 2006 was rushed to Lincoln Hospital and then on to Leicester Hospital with sudden onset kidney failure, found after a routine blood test, I was in severe shock as anyone might be.  After his first night in Leicester I returned home alone and immediately went to my PC to look for the causes of sudden kidney failure. I remember writing on a scrap of paper the three things that matched closely Hamada’s condition, the second on my list being Multiple Myeloma. It was something at the time I knew very little about, I did know, it was not as yet, a curable cancer. So when the next day, the Doctor with a rather grim face, came to tell us the results of the barrage of tests taken and the devastating news, I passed to him the small list that had been tucked in the palm of my hand asking " is it one of these " and in my mind thinking, don’t let it be the second one, but it was! I think from that very moment on I decided that for me, the only way to confront this crisis was face on, asking and learning as much as I could every step of the way, I was standing on the edge of a cliff with a strong wind blowing. I could dive and swim away, shut my mind or bury my head. I did not want this thing to be happening to us but it was. So I decided to turn to face that strong wind with as much force and as much knowledge about this illness, that I could managed to glean and from every source I could possibly find. Knowledge will give me power. If I could understand as much about this disease, as my small brain will allow, it would enable us to discuss and make good choices each time we needed to fight. Is it the right time for chemotherapy? should a stem cell transplant be an option? All these questions are asked daily by people with this very serious illness. I wondered, are these drugs the safest Hamada can receive? will they obtain the results required? I needed to learn fast, I needed to learn about the drugs that would damage further or take away the last remaining percentage of kidneys working. Oh yes! it happened, the young Doctor who prescribed by mistake, drugs for Hamada, that would have wiped out any remaining kidney function, had he taken them. After all the months of chemotherapy, all the money that had been spent getting him to and through a Stem Cell Transplant, had I not read, had I not intervened! With my newly learnt knowledge I was able to check what had been prescribed, query and shout loudly before any damage was done. For me gaining as much knowledge as I can, seems the only way to protect someone who is unwell and cannot do it for themselves. Many I know will think too much knowledge is a dangerous thing when dealing with medical matters, perhaps some are saying I bet she interferes too much. I do not believe this to be true and I really don’t care, for without this knowledge how can we make good judgements when given the very serious choices we are expected to make.
I keep cheerful because I am very lucky to have an amazing family and good friends who support me in so many different ways. Our children who bring light and joy every time they visit and the fun we all have together and their constant support in cheering Hamada on. My dear friends who never fail to phone, often picking just the time when I need cheering up a bit, when the day has been tough or I am tired because I have spent too long in Hospital waiting rooms, dreaming of all the other places I long to be. My dear Internet friends with their great messages and the American Cancer Network ACOR, a myeloma list-serve whose knowledge is just incredible and so often points sufferers of myeloma in the right direction.
How my heart goes out to those who struggle alone or may have families who do not understand, or even worse ,do not care about the strains of day to day living or caring for those with Multiple Myeloma. How badly it affects me when I see elderly folk appearing both to be unwell, struggling to manage their hospital appointments and to understand their ‘chemo’ regimes or their routine medications, they need our help. Then again I know quite clearly that I need to find strength when waiting on ‘the edge of my cliff ‘ knowing my love one is in partial remission and wondering how long it will last this time, perhaps looking for changes and signs that might mean this precious time is over. Hoping that I will once again find ‘ the power within ‘ to go forward with knowledge gained, to continue to confront and fight, to obtain the best possible care for my love one, for as long as I too, remain well.
So to all of you that have asked these questions, I choose to turn always from the edge of the cliff and walk into the wind, I will put a smile on my face daily, even when it hurts, with the knowledge I continue to learn, I will stand close to Hamada and help him to make good choices and I will face this ‘beast’ straight on.

All Rights Reserved @ 2008

The Power Within can be purchased from:

http://www.susiehemingway.com/books/

Wishing all that visit my blog "A Very Happy And Peaceful New Year" It is tough for me to say goodbye to 2009, as it has been more comfortable than the past two years for Hamada with no chemotherapy during this year and I hate to wish the days away, but we must look  forward with strength and hope to a new year  Thank you all for your most generous and comforting comments and good wishes throughout the year. We had a wonderful Christmas with our family staying with son Jo and Laura in the Chilterns and visiting friends and family. Hamada was most content and enjoyed very much this festive time. Now safely home again we shall look forward to 2010 wishing all those facing their own personal battles, hope, courage and a peaceful time.

I carry thee like the heavy rain drenched leaves cover the precious plants

I carry thee like the mother with soft-fleshed babe in arms

I carry thee on heavy days, when limbs are tired but heart is willing

I carry thee.

I think for you on difficult days when drug filled mind is fuddled and quiet

I think ahead for you with heavy heart filled with anxious thoughts of decisions that must be made

I think of you when struggles to move are hard and bones make creaks and eyes are dulled

I think of you.

I watch for you, I listen to your breathing, when night has fallen and stillness comes

I watch for you with hope you never stumble or fall

I watch for you to make that kiss you love, entirely right at night

I watch for you.

I dream for you that days will pass pain free and  be filled with God’s blessings

I dream for you when watching  Autumn leaves fall as trees again show their tangled limbs.

I dream for you that you will see the Summer sun, rise across the pastures green once more

I carry thee….

@ Copyright 2009

We decided as we had a full house at “Hemingway” for the Bank Holiday Weekend to visit a lovely beach close to our home here in the East Midlands. The weather was fair with plenty  of warm sun and a brisk breeze  that helped the colourful Kites reach their blustery heights. There were ten of us in all, so plenty of willing hands to push Hamada’s chair along the old fashioned promenade to reach our base for the day at one of the brightly coloured chalets  perched high with their watchful eyes, newly painted wood and so many memories of  families gone before. They made a stunning border along the seafront.

Hamada was thrilled with being by the sea again, such a favourite place and reminding him immediately of  his childhood growing up close to the Sea in Alexandria, Egypt, where as children they also had a beach hut. A smile seldom left his face all day. He watch intently at all about him, enjoying his family and the fun and laughter we all had. Savouring the good fish and chip lunch, nothing quite so enjoyable as eating this English delight, washed down with a nice glass of Bollinger’s. Much flying of kites , Matt, Jo and Stuart steering their garish coloured Kites high for us to see clearly at our good advantage point and our little Grandson even braving the cold North Sea!

A loving  family like many others, tucking into ice-cream, happy to be together and enjoying the banter and fun of a typical English Summer Day. Just as Hamada said “ A very comforting Day”

10561 view @ September 1 2009.

Calm are the seas we travel now,
the sail is down
how tranquil is the ocean,
we drift past the deserted islands
with their scattered palms and
fallen coconuts,
we lay on the deck, with bronzed
skin and salty mouths
calm are our seas,
the soft magnolia smell of warm breezes
whispers through our hair
all is blue, placid and serene,
I am here with you, for once
essential as the mainstay
Calm are our Seas…

Photo: Personal Oil Painting – somewhere special in Oman.

* N.B. See Comments for Dedication.
@ Copyright Susie Hemingway 2009