There will be no more entries here, Hamada's journey is now complete and so all further writing will be over at http://www.susiehemingway.com/ starting with "A Snow Covered Village In December" which tells about the weekend of 'celebration of Hamada's life'. Thank you dear ones who have followed faithfully here, for all your wonderful comments that spurred us on daily, for all your superb support that helped us keep up the fight against the most difficult disease of Multiple Myeloma. I send all my very best wishes, hope and love, to those who continue to fight the battle against Multiple Myeloma. I will continue with my support and my hope, that a cure will soon be found.
02 December, 2010
Let me not falter dear Lord.
Let me not fall at this final hurdle.
Guide me now to complete this task.
Let me not plaintively wail and scream as my heart doth now.
Allow me to show dignity that he always showed.
Let me not stand beneath the stars and scream his name aloud.
Let me remember this day, as we honour him.
Grant me the courage that he always showed.
Let me not go down on my bended knees and shout at the sky,
And implore you to return him to me.
Let me not fall at this final hurdle.
Give me the strength Oh Lord not to fail,
with this final task...
Susie Hemingway December 2010
All Rights reserved.
"Poetry is the opening and closing of a door,
leaving those who look through to guess about
what is seen during a moment" Carl Sandburg.
" I pray that the poems written by me on this blog have done just that" Susie Hemingway.
23 November, 2010
Just a short update for those who are awaiting news of our dear Hamada, especially our family in Egypt. Hamada has started his final journey home to rest. Yesterday a wonderful nurse from the Macmillan support team came to visit at home and confirmed what I already knew. Hamada is slipping quietly to his resting place. He is no longer speaking or drinking he has a 'rattle' on his chest and his body is slowly shutting down. I have spent all of the night hours watching over him, catching small naps when I can.
The Doctor is to arrive shortly and will bring or prescribe all necessary drugs to administer by injections or patches for Hamada's comfort now that he is not swallowing well.
For the nurses who I know read this web-blog: Hamada did not pass urine for 24 hours, but today some, which I believe shows his kidneys have not completely shut down yet. It is a much better way for him to 'pass' if they do.
As our Jo said, perhaps this is our last miracle for this journey to end peacefully this way and I pray with all my heart for this to be for my beloved Warrior. It is also possible that he will stay in this 'dream like' state for a few more days yet, although I do not believe so, he is extremely weak now.
My dear sister Jenny and brother-in-law Ian, lovingly came this morning to help me tenderly bathe him and to change linens and to make Hamada smell just like I know he loves, all friends will know how fussy Hamada is with his love of good cologne. He is peaceful and in no pain, dearly sweet and surrounded with much love.
22 November, 2010
Hamada has spoken very little during the last two days. managing only to smile and greet the family who have all been here at "Hemingway" this weekend. I know by his smiles that he has enjoyed so much, seeing them all, during this bittersweet weekend.
Jo gave his father a wonderful shave something that I was not managing to do very well! It was a wonderful time of family closeness. I received some of the best much needed hugs, which have given me more courage to continue after this long worrying week.
After everyone had left I managed to get Hamada to his favourite chair in the sitting room during the early evening, thus giving me time to put fresh linens on his bed. He was not speaking at all during this time not eating anything, just dozing on and off. During the middle of the evening he became more agitated and seemed a little distressed so I helped him back to the safety of his bed.
As I settled him down for the night he spoke, his voice clear for the first time in two days. He was tearful and told me that he was very tired now but needed to say something, struggling to find the words he said that he did not think he could continue any further, almost as if he was asking for permission to go. I let him know gently that it was now time for him to rest and for him not to be concerned about anything but sleeping now. He spoke about his love for me and his worries of leaving me and I reassured him that I would be fine, his beautiful words brought a few gentle tears to us both. I laid my face close to his as he settled into a very calm deep sleep and so a time of loving observation and a night vigil for me began. It is now 6am and Hamada is still sleeping, his breathing just a gentle rhythm in the quietness of the house and as I go for my shower I wonder what this new day will bring and is it time now?
20 November, 2010
The terrible headache which has been with Hamada for a week now, has become too much for him to bear. Yesterday he was prescribed control release Morphine and also liquid morphine for extra support. As we are now back with our own local GP, he is of the opinion that this headache is being caused by the lowering of kidney function even further. The kidneys will have course, taken a great strain during the recent blood and platelet transfusions even though great care was taken to transfuse really slowly ( 6 Hours ). Hamada has been in such great pain from this headache which cannot be allow to continue, hence the Morphine being started yesterday. All the family are here this weekend which is a great support. So much joy they all bring with them and they have been quietly chatting for short times with Hamada and the delight shows on his dear face as he enjoys seeing them so much. We are being spoilt as we have both had recent birthdays, wonderful days all together...just being...
16 November, 2010
Hamada has now received two whole blood units and one of platelets which took six hours, being slowly transfused as to protect the remaining kidney function. Still from Friday evening Hamada has been suffering from an extremely bad headache and he has vomited several times. I have been carefully monitoring his blood pressure and temperature which have both been raised and at one time gave great cause for concern leading me to phone the Doctor for further advice on getting this pain under control. It was not a pain in a single place but around the temples and something like a migraine type headache affecting his eyes. Giving gentle massage to the area seems to help some. It has been an anxious four days I must admit but being as honest as I can, I feel his kidneys are shutting down and we are approaching the end.
14 November, 2010
12 November, 2010
After blood tests done yesterday at Lincoln County Hospital the results show that Hamada's platelet level is extremely low at 16. So this morning he will have a further blood test to check antibodies(I believe) and then his special ordered Platelets will come from Sheffield and he will receive these at the Medical Day Unit at Lincoln. A simply wonderful team there!
This transfusion will hopefully help make him more comfortable and halt the bleeding that can be seen in hundreds of little blood spots under the skin. Many on his face and even more on his arms and lower trunk. He will be at the hospital for at least three hours but this hopefully will save a weekend stay. Many thanks to our Jenny who has been assisting with another strong arm, bless you Jenny, what would I do without you X
Addendum: Hamada spent six hours getting transfusions today - on arriving his HB had dropped to 8 and his Platelets only 10 - he is back home now and feeling somewhat better.
09 November, 2010
I cannot shut my mind for all I need
05 November, 2010
Beautiful mellow Autumn days spent quietly, enjoying precious time with good food and sweet music. Nothing terribly important to report. We are to meet the nice Macmillan Nurse who phoned this week later on this month. Hamada does not really need assistance yet from this wonderful team of nurses and I hope it will be a long time before he does but as they say it will be nice to have a visit, so the nurse may get to know him. I will have the kettle on ready for a cuppa together. This will also give me a moment to ask questions and further advice.
We are planning to visit Haematology on the 11th to get CBC’s done, in future I will be able to read the kidney results on-line and this has now been set-up. So a future plan seems to be taking place and in the meantime we are looking forward to Hamada’s birthday at the weekend and a small celebration, a planned meal at the village pub which he usually enjoys very much. The photos here are from “Hemingway” It is a beautiful Autumn here in this little Village in the month of November.
Photos: Susie's Collection at "Hemingway"
24 October, 2010
21 October, 2010
17 October, 2010
Further to the post below: On Friday afternoon we received two calls from Lincoln Hospital, one from the Haematology Department and one from the Renal Care Support Team both informing us that Hamada's last cretinine blood level has lowered to 423 making his eGFR now about 12. Yes, a slight improvement! The Urea has also lowered from 18 to 15.3 (which is better)
The Heamatology Consultant now wishes to see Hamada in six weeks! he is sending a letter to confirm this even though Hamada had accepted it completely and was most agreeable, not to attend more clinics. So God willing maybe, just maybe, once the Revlimid and Aspirin leave his body, the kidneys may improve enough to continue with more MM treatment.
I am sure there are many who understand how hard these changes are to recieve from day to day. As a Carer of someone much loved, I go from being saddened to the core of my being, trying so hard to keep Hamada cheerful and with at least some hope. To being so elated that I spend my days dancing around like some demon mad woman attached to my iPod forgetting to buy Vegetables and buying Lilies instead! It is nobodys fault and I blame noone, it is as it is.
Yet, this rollercoaster of emotions is so very hard to deal with but I do so love being right about this, certainly for the time being at least.
If the Revlimid and Aspirin leave the body could it restore the kidneys enough?!!
14 October, 2010
Still time will tell but I stand by my lay-woman's judgement, that it was the Revlimid and Aspirin that has compounded the damage. Further creatinine levels may in fact show this, as it clears from the body?
It is hard to take in the severity of how ill Hamada is, when I look at him there is no outward sign that has suddenly appeared! A tiny puffiness around his eyes but no swelling of the ankles, just a continuous need for sleep and a very tiny amount of energy. He is still eating reasonably well and always his cheerful self, dignified and eager to retain control of this beastly illness. As he has managed before with a very low kidney function eGFR (7) at one point and survived for these past four and a half years with a eGFR never being more than 17 at the highest point. Is it then not crazy for me to expect more months? I am aware of course that should the kidney function nosedive once more, then it would be a very short time indeed. Although we have finished all clinics now unless there is a dramatic change, Hamada's blood will still be monitored of course, with the first visit by the out-care renal team. A nurse will be coming here on the 25th of this month. I am now waiting for the last creatinine reading. Maybe I am 'clutching at straws' but this will in the very least, be most interesting! Keep well all.
09 October, 2010
07 October, 2010
Not such good news for Hamada this week. In the past few days it has be detected that Hamada's kidney function has taken a sharp downturn and in an effort to halt this as quickly as possible and thus the need for dialysis, Revlimid, Dex, and the GCSF injections have all been stopped, certainly for the time being. This has been a huge disappointment, as Revlimid was proving to be of some help to Hamada. He has only completed two cycles of this regime and all blood counts had improved a lot and PP also reduced. This has been an exhausting week for both of us and we complete it tomorrow with a further morning at Lincoln for a consultation with two renal specialists for their assessment and will up-date when we have further news.
02 October, 2010
28 September, 2010
21 September, 2010
18 September, 2010
My thoughts and prayers today are with Dianne and Vern West of Nevada USA. Vern who was diagnosed with MM at the same time as Hamada, has endured so much with courage and such great dignity.
We have supported each other along the way with this fight against the 'beast', through many trials and tribulations for both dear men during this past four + years. Dianne fighting every step of the way to obtain the very best care for her beloved husband with such support and so much love and goodness, while with courage and wise words supporting others like us along this journey.
Today Vern entered into hospice care and my heart goes out to them both, with love and hope that in the coming days they find the eternal peace that they so deserve.
Vern and Dianne visited England some time ago for their 30th Wedding Anniversary and so I post these photos taken yesterday at the highest point 'Red Hill' near my home; as I blew a prayer into the wind, to cross an ocean, in honour of them both.
addendum: Vern West passed away on the 22nd September 2010 "eternal rest give unto him Oh lord and let perpetual light shine upon him " His loving wife Dianne was by his side.
Views from Red Hill: Photo by Susie Hemingway.
All Rights Reserved 2010.
12 September, 2010
09 September, 2010
Just the best news received today at Hamada's consultation at Lincoln. I felt he was doing well (see below) but to my surprise, the Para Protein results were through and a wonderful drop of 5 !! was recorded and is now at 16. All bloods have improved some. So with bated breath dare I say it looks like Revlimid is working it's magic! This was such a surprise to us, as we did not think we would get these results so soon. Hamada has had just one course of Revlimid so far.
I can hear him in the other room snoring as he has a little nap and if I peep I am sure there is a smile on his face, as there was on the consultant's today. How wonderful is this, such a long time since I have been able to write something positive and far too long since we have had any good news to report. What a warrior!!
08 September, 2010
A short update to say that Hamada has now completed his first course of Revlimid and all seems to be progressing well. No need for additional Platelets which was rather a problem with Velcade, bloods counts are not too bad. We attend Lincoln''s Haematology again tomorrow for the weekly blood tests and then the completed months consultation. Important bloods from last week are shown below for those who follow such things.
Neutrophils 4.99 ( big improvement here)
Hamada continues with all other maintenance drugs and now added daily aspirin also trice weekly Filgrastim and once weekly Aranesp.
23 August, 2010
I hear you fretful in slumber
13 August, 2010
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.
09 August, 2010
25 July, 2010
Hamada has been resting well since the four cycles of Velcade chemotherapy treatment, which as regular readers will know, was not successful for him in reducing the MM burden. He has been having regular blood checks and visits to the Renal Consultant since then. For those who understand the current blood readings and are interested, the basics are as follows:
17 July, 2010
16 July, 2010
This week we learnt that our friend and Hamada’s fellow warrior, travelling the same MM road has passed away. He was a lovely gentleman whom we had come to know during the trips to Lincoln County and more so during the recent rounds of Velcade Chemotherapy (both having the same regimes). This gentleman was the subject of my poem “The Man With The White Knitted Hat” which is shown below in a recent post. It has saddened as both very much and we send our heartfelt condolences to his dear wife. "God Speed Keith, your journey with MM was all too short"
06 July, 2010
26 June, 2010
After consultation this Thursday it has been jointly decided to adopt a wait and watch policy after the poor response from the three months treatment with the Chemotherapy drug Velcade.It was not successful for Hamada only reducing the PP(M-Spike) by 4 and since the finish of treatment this is now back to a whopping 16.9. It was sad that after twice weekly trips for the Velcade and sometimes many more with transfusions, when platelets dropped to a very low 22 and with clinic visits also to monitor kidney function it was indeed an exhausting time for Hamada.
Cret 342 - HB 10.1 - WC 2.4 - PP 16.9 and Platelets a whopping 69(remember they were 22).
Although these readings look awful they are not that bad for Hamada and his Doctor used the word stable, certainly a word not heard for many months! Not a word I would use but there we go. We are to return in four weeks time and the plan is to start Revlimid when after close monitoring they deem it the right time. The worrying high PP does concern me so, I spoke to the consultant about this but he is adamant that Hamada needs time to recoup before continuing his fight. While I respect this, they have assured me they will monitor very closely indeed. It's not satisfactory, still what really is with MM nothing that I can see! Hamada is his always cheerful self, the most delightful patient and as the picture here shows a very much loved Grandpa. My best wishes to all who read this.
Manu and Grandpa.
21 June, 2010
We swing together you and I
in that old shaded place we love,
peaceful sweet smelling garden air
that gentle breeze that tickles hair,
the yellow Iris in our view,
Oh how I love to be with you!
Tranquil sounds of garden spirits
the chirping of the evensong thrush
lavender blue scent comes through,
we swing together like children do.
This quiet spot where we can dream
these special hours away,
amid the slowing of day ending
we talk of yesterday,
no more is needed for you and I
we know that time is short
and so we talk and dream and think
of what this life has brought.
We dream together
you and I,
on this old garden swing.
Photo: from “Hemingway”
All Rights Reserved.
03 June, 2010
It was an eternal wait that day
a long perpetual tedious episode
an abuse on the senses,
the faces filling the clinic suite
sitting too close together at tables that encumbered,
all appearing the same, all resigned to their fate;
all stricken with disbelief.
Can you put aside like dead flowers a mind that is full of fear?
Can you not feel the pain of those set faces that await
the ‘clarion call’ for news no one wishes to hear?
Can you relentlessly show that crumbling smile?
Can you quieten the beating of your own heart?
I watched the woman sitting opposite me, a reflection of myself,
sitting beside her Man, worry etching her face,
quietly waiting the prophecy that could change their lives,
was she to receive news that would set her Man free?
Set them both free!
I watched…I watched…
I watched this fragile life snap and break,
I watched those tears at another table…
All Rights Reserved @ Susie Hemingway 2010
* NB After being on Velcade and Dexamethasone(80mg weekly) since February 22 2010 Hamada's Para-Protein (M-Spike) has only dropped to 15 He is to have a few weeks break and then start with the oral chemotherapy Revlimid.The fight continues.
29 May, 2010
Sunlit shafts streak in rays across celestial blue skies,
pink fluffy pendulous blossoms wave their clusters in the breeze,
the vivid startling green of spring appears.
Lucky are those who see this sight of approaching summer,
the russet copper tones of the Lincoln Reds standing proud and in our view.
The old bent ivy entwined gnarled trees start their fight for a few covered branches,
the lavender coloured lilac returns once more to please eager eyes.
A daily delight for you my love as this season returns once more, this quality that does not vary,
bringing a stillness to the land, gone are the painful gales of Winter.
Something strong, something constant and unchanging,
something to entice you from your bed...
Your wish to see these jewelled days has been granted.
Was he listening when I called to him?
Did he paint this picture just for you?
*Lincoln Red – A breed of cattle. May 2010.
All Rights Reserved -
24 May, 2010
How wonderful the weather has been here in the UK recently. Several wonderful sunlit days and temperatures on Saturday reaching 28c and a weekend that was hotter than Corfu! It was a real social weekend for us, with youngest Son Yousef(Jo) arriving on Saturday evening just as I was finishing a lovely Safari Supper in the village. I'm sure you know the type of thing, you all start together in one house and then informed where you will have your starters, after you have enjoyed that, you are told where to go for your main course and then every group ends up together in the final house for the desserts, cheese, biscuits and coffee. It was a warm balmy evening and so lovely to walk the lanes of our pretty little village, everyone going in different directions and passing each other again as we changed scenes. The organizer cleverly selected the houses I would attend, close by to our home, so for me on my walks to the next part of the meal, I was able to check in on Hamada. He is not well enough to attend this type of social occasion, so he chose to stay at home with very special supper tray. We could also kept in touch by mobile throughout the evening and we also have the wonderful 'Link-Line' alarm system fitted, so he wears the special pendant that will call anyone on his list immediately, should he feel unwell or need help. A wonderful system which allows me to relax some.
On Sunday which was again a very warm day, we had a lovely roast beef lunch at our village pub. Jo driving Hamada the little way, in his rather sporty car with the roof down, which Hamada so enjoyed (see Photo).
The other photo was taken during our meal and it saddens me very much to see how small Hamada has become. Of course I realized that before and am aware it's the nature of this beastly illness that has robbed him of 6" in height but recently he has become so much smaller in stature and seeing it clearly in this photo has confirmed these changes for me. After our rather good roast beef, we had a very lovely date to keep. One of the stalwarts of our village reached the grand age of ninety and we attended a garden party in her honour. Hamada made a supreme effort to be at this occasion as he is very fond of this particular rather marvellous lady.
The hosts of this wonderful event found Hamada a good seat under the shade of a large umbrella and with Jo's help he settled in very comfortably and managed a good time catching-up with all his old friends that through this long winter and last exhausting round of chemo, he had not been able to chat with in quite a while. What a change this lovely weather brings, we forget how important it is to those who are unwell. How it brought a sparkle to his eyes and such joy to his heart as each and everyone came to chat with him, almost as much a celebrity as the marvellous lady to whom Hamada had been so anxious to pay his birthday respects to.
14 May, 2010
Written on the 4th anniversary of Hamada's diagnosis with Multiple Myeloma.
Recently I left a comment on a fellow bloggers site thanking her for her generous continuous support, not only to me but to many other Multiple Myeloma sufferers and their Carers. Many hours of her time must have been spent reading and entering her sensitive most knowledgeable comments worldwide. She does so with grace and clarity unstinting in her kind praise of my diary poems and has been following Hamada’s journey for a number of years. She always seems to pick just the right time for a comment to bolster flagging spirits and I have noticed her words when most needed on many blogs around the world. This to me is just the most perfect use of blogging.
When I first started entering my thoughts in the form of poems four years ago it was the only way to find an outlet for my overwhelming sadness and terrible frustrations at the changes that had befallen Hamada. It had been suggested by my Son whose understanding of my need to write my poems and his great knowledge of blogging guided me to this unique world. I could vent my feelings sending my words into the ‘blogosphere’ never thinking or caring if they would be read or not. Cleansing my mind very often of my innermost feelings, thus saving my sanity from the injustice of it all. I have spoken on the radio before of my need to record this time of Hamada’s journey with this most difficult of diseases. When asked has this been helpful to me, I answered to say with sincere honesty that yes this has most definitely been the case. What an amazing outlet is this most modern of all media. I have been writing poems since a young woman, so for me the easiest format was to place my poems in a diary form. Releasing as the need came, the words of my heart.
My how from little acorns grew the biggest tree! Overnight my blog was visited and within a short while I had found this wonderful support network of other MM sufferers and their wonderful caregivers. All seeming to want to read my poems and I in return was able to not only glean the information I so badly craved about this illness of Multiple Myeloma from their sites. To subsequently understand their knowledge, the complicated medical jargon and learn about the different circumstances of these wonderful people but also and most importantly for me, to acknowledge the pain contained in their web-pages. We very quickly formed a united front against this beastly cancer that has intruded into our lives and have over these past years formed great friendships, with new bloggers arriving weekly. We spur each other on in times of crisis and rejoice and praise together in the good times. We feel each other’s pain as if it was our own, can relate and understand the many problems that Multiple Myeloma brings. How a kind caring word helps a difficult day.
Many of us, Patients and Carers worldwide have also formed friendships via the much maligned network of Facebook, where we reach out the hand of friendship daily, supporting each other where we can. For me this is so much better than the psychiatrist couch or local Carers group which would be too difficult to attend when caring twenty four hours a day and when time is so precious.
Of course poetry is not for everyone and certainly my poems of love cannot possibly be to everyone’s taste but in the years I have been blogging, much to my amazement I have never had a nasty or inappropriate comment, not a single one; and this week my first web-blog reached fifty thousand hits. I would never have believed the whole new world that has been opened to me through a few simple poems. I thank the many internet friends who choose to follow our journey and allow me to follow theirs. Not a path I would have readily chosen but Life with a capital L threw this Myeloma our way, bringing many in the same position with their friendship to offer, some joy amid the sadness. I know my Family, Myeloma friends and their Caregivers completely understand that for me to complete this journal successfully; I must always write my poems as a true recollection of this time. They must be an accurate account, so this does not always make for easy reading and for some who find them too sad, I know they won’t be read. For the many who send emails and place their lovely comments on my blogs, I thank you. For I also know that many find them moving enough to release what I know have been called ‘healing tears’. If this helps just one person in some small way to continue forward, refreshed to yet another day, as it does for me when the words escape from my mind, then I consider it a worthwhile therapeutic exercise. I am aware that for many, writing of love and personal feelings is difficult and somewhat embarrassing, although this has never been mentioned to me. I am not so insular as to not understand this and it is a selfish purgative act so entirely helpful to me and after all was the very reason I started these blogs in the first place. Many of my poems are sad but we have over the years enjoyed so many happy and immensely joyous occasions and I have tried to capture these too especially in my earlier poems.
Using this most modern media to vent my feelings and save my sanity has brought many rewards but mostly it has been the link-up of this simply wonderful group of kind and caring individuals who are all following the same path as me.
To the wonderful lady whom I mentioned at the start of this article, who has the biggest caring heart and provides such a service to those who are often in a sad and difficult place I salute you.
To the wonderful folk doing the very best they can daily for their families and loved ones and in the continued fight to help with the individual knowledge gained which we all share, in the hope a cure for this most wretched illness will be found, I stand in praise of you.
With loving thanks to my supportive family my special girl and men friends who never ever fail me.
Taken from: “Small Acorns “– written on the 4th Anniversary of Hamada’s diagnosis of Multiple Myeloma. May 2010.
Copyright @ Susie Hemingway 2010
10 May, 2010
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
07 May, 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.
06 May, 2010
Just recently our dear blogger friend Nancy of www.lacootina.blogspot.com lost her short fight against Multiple Myeloma. There is no way to say just what an amazingly brave lady she was. So many of our MM blogging world will miss her writing terribly, I know I will.
Our hearts are sad for Nancy
a loss in which our hands would love to reach
across the miles of space to say goodbye,
we wish our eyes could see your words as daily missed
the spirit of brave trials in life lived with such pain,
in beauty of that lively energetic soul engraved within our minds
our hearts are sad for Nancy.
You found such laughter in a testing world
displayed in warmth that radiated upon your page,
filling our private worlds for us to read.
We loved the way your smiles and rants lit up our rooms
wishing for tomorrow’s sun, that could not be.
Your bravery as God enfolded you within his arms
for sure you are his special angel,
but our hearts are sad for Nancy,
our hearts are sad for Nancy...
27 April, 2010
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.
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.
20 April, 2010
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.
15 April, 2010
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.
09 April, 2010
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.
02 April, 2010
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.
26 March, 2010
Are you a jewel?
Priceless exquisite, cut of flawless clarity.
A glittering seven carat white diamond perhaps?
A gleaming diadem of chosen stones or a
desirable vibrant emerald, of richly sparkling hues.
For you are shades of purple…
Purple like the dark rings that surround your eyes,
Purple like the feeling of these past weeks,
Purple coloured days that were draining, not pink.
Purple coloured nights that stretched forever,
as purple as the scarf I wore today, for I was sad.
Definitely purple but no amethyst are you
a solitaire yes, a single flawless gem.
A most valuable priceless jewel and extremely rare.
A Jewel to fight as you do,
Yes! A Purple Diamond, that’s you….
All Rights Reserved @ 2010
Written with love by Susie Hemingway for all those who love and now “Shades of Purple – A Jewel Perhaps” is to be published by United Press UK in their new book “Reflections”
23 March, 2010
Hamada has been unwell for over a week with a cold which has now turned into a nasty chest infection. Our visit yesterday to Lincoln for his 3rd Velcade infusion in this the 2nd cycle, was curtailed when I asked to see the Doctor as I was so concerned about this cough and just how weary Hamada seemed to be. At Haematology the first phlebotomist had great difficulty in drawing Hamada's Blood and it took a good deal of time and skill to then achieve this(thank you Jill) It looked like Hamada was going to be admitted but the Doctor give him a good examination and prescribed antibiotics (augmentin) and after a series of tests, ECG, chest X-Ray he was allowed to go home. The Velcade has now been stopped for a week at least, such a shame as so far, Hamada has not been able to complete a whole cycle of the much needed chemotherapy. It is indeed a roller coaster!
17 March, 2010
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.
08 March, 2010
Hamada has stopped Velcade after just three infusions as his platelets have crashed to just twenty-two. He is having a rest of ten days with another CBC on Thursday next, to assess the situation and see if he may continue.
A Visit from Grandson Manu for the weekend brought much joy to Hamada.
Addendum: A visit to Haematology yesterday, with a full physical check-up and a further blood test, now show Hamada's platelets have bounced back to 33, Hamada will continue next Monday (dv) his 2nd course of Velcade. Good news indeed.
04 March, 2010
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
“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
26 February, 2010
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
19 February, 2010
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...