Category — Health Issues

When I started this blog more than four years ago I promised always to tell how it is for a Carer of someone with MM. It was important for me that my poems conveyed a little story of the days that unfolded on this journey. Sometimes the truth of my feelings may hurt more than at other times. I try to think of other MM sufferers, I truly do. Then of course those that may be hurt by my thoughts here, will not subscribe. So I continue through these most difficult days. The following  verses describe my feelings during a very lovely birthday weekend for Hamada. Our son Jo spent a special time with his Father, we had a celebratory meal together and all in all it was a perfect weekend. Except for one thing although I suppose I have always seen Hamada through ‘rose tinted glasses’. I could now see clearly what I suppose others can see and have notice for some time, visual changes to my dear man’s face.

“Changes”

For I am not blind I see now

clearly as these given days allow,

For I am not stupid for thinking more,

willing you to stay.

This blighted weakness pursues you

like some demon spirit

whom I curse with my very being!

The once thought improbable

is happening darling man,

I cannot close my eyes

to forget these brown eyes fading,

I cannot shut my mind for all I need

is to see your smile.

These brutal changes tear at your resistance

this beloved face is changing

dissolving and vanishing from view,

but never from my heart.

I can at last, see this Beast Within.

This wicked Beast who will not leave you

However hard we try.

I am not blind – for I can see ,

this despair at Changes…

So many changes…

All Rights Reserved 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 specially 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 I hope 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

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 this month. Hamada does not  really need assistance yet from this lovely 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 can get to know him. I will have the kettle on, ready for a cuppa together.  This will also give me a moment to ask for any 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 of “Hemingway” It is a beautiful Autumn here in this little Village in the month of November.

As swooping as the Rollercoaster

my heart hangs in fearful suspended news

that fills these ‘purple days’.

Days that bring shattered dreams,

only the strongest mind can hold.

My laughter becomes an echo that teeters on the edge,

as I snap and break at disclosures strewn around.

My heart bleeds to dissolve this anger

which knows no bounds, and is

as unruly as my mind.

Soaring high into this shimmering mosaic sky

I hang on like a child that screams into the wind,

as these punishing swoops, turn into views as

fragile and consuming as this Rollercoaster Life.

All Rights Reserved  October 2010.

Further to the post below. On Friday afternoon, we received two calls from Lincoln Hospital, one from the Haematology Dept and one from the Renal Care Support Team both informing us, that Hamada’s  last creatinine  blood level has lowered to 423 making his eGFR now about 12. Yes, a slight improvement ! The Urea had also lowered from 18 to 15.3 (which is good).

 

The Haematology 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  with their advice not to attend any 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 receive from day to day. As a Carer of someone much loved, I go from being saddened to the core of my very 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 nobody’s fault and I blame no one, 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 ? !!!

After a worrisome week and Hamada’s well considered decision not to continue with more treatments for the time being, which would now involve dialysis, we are both feeling relieved and peaceful that this huge decision is over. We have had what we believe was the final Haematology consultation today unless a miracle occurs and we have had a few of those before. So with the Doctor and lovely Nurse Tracy present, we discussed all that was needed. It was a bittersweet consultation after all these years and with the last results from the second round of Revlimid, the Paraprotein reading continues to show a drop, this time -4 bringing Hamada’s count to 12 from the recent 21.7 It is a disappointment beyond compare that the failing kidneys which were the first reason to suspect MM may well be the ending point also. Because of the suddenness of this lowering of kidney function, it is hard for me not to relate it to the Revlimid + Aspirin but I know of Revlimids great success worldwide and for some without kidney problems the lowering of the PP in just two courses really shows, that this is the drug of success for many, and it may well have continued to reduce the Myeloma load for Hamada. One point to consider is that we all know that Myeloma leeches calcium from the bones and this alone after all this time, could indeed be the single reason the kidneys are failing again.
Still time will tell and I stand by my lay/woman’s judgement that it is the Revlimid + Aspirin that has compounded the damage. Further creatinine readings may in fact show this, if there is a marked improvement  now these drugs has been removed? 
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, 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 remarkable change in Kidney function, Hamada’s blood will still be monitored,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 taken yesterday, maybe I am ‘clutching at straws’ but this will in the very least, be most interesting! Keep well all.

A return visit again yesterday to the renal clinic brought more bad news I’m afraid. Hamada’s creatinine level is  now at 530  (eGFR10 ish) and discussion about dialysis did not go well either. As Hamada’s arm veins  are now badly damaged from these years of blood work, he will have to have a line (perm-cath) inserted into the neck for the third time, (two ‘Hickman lines before) to manage dialysis, it cannot be done any other way for him. This also can’t be done at Lincoln Hospital only at Leicester, which is a 150 mile round trip. Hamada would  then stay until Dialysis is established successfully (if it can be?)  then when a slot allows, transferred back to Lincoln or Boston Hospitals for the regular three times per week x four hours routine of dialysis.  The big consideration is, that this routine may take some time to achieve and is not of course without danger or risk of infection or bleeding with low platelets, poor blood etc and then the Doctors say how much extra time would this give him?

Many questions and decisions to think about. The problem that has arisen is that Hamada is saying he does not want to leave his home for this perhaps long stay. Both renal consultants  have not given much hope for achieving this procedure without problems arising at some stage due to Hamada’s fragile state. This leaves Hamada with a dilemma and a big decision about whether this is the time to retire from the fight and let nature takes it’s course or carry on like the warrior he has always been. I believe perhaps, this is a temporary feeling of despondency.  The renal team of course wish to prepare him ready with the line prior to complete kidney failure, which they say is imminent, as it is not wise to be admitted to Leicester as an emergency and not have this surgery which takes 45  minutes and must be done as an elective surgery procedure and ready in place.

This huge immediate lowering in kidney function after four and half years treatment for Multiple Myeloma has come about very suddenly. Hamada regained function from eGFR6 to eGFR17 during  the past four years from diagnosis to this time.  Has only recently gained a small reduction in Para-Protein on the Multiple Myeloma side and certainly appeared to be slightly improved.

There is no doubt in my mind  this sudden reduction in kidney function has been caused by the Revlimid which was started in August this year at a reduced dosage 15mg every other day but it is known to gather in the kidneys and also by the daily use of Aspirin 75mg, which is also known to affect and reduce kidney function – see: Article by Robert P Kimberly  and Paul H Ploz on Aspirin-“Induced Depression Of Renal Function” in The New England Journal of Medicine. Aspirin  was given to avoid DVT while on Rev.

This will be a most difficult week trying to persuaded Hamada that fighting on will be worthwhile even though the consultants do not believe it will give him much extra time, then of course it is not my decision to make and I will always respect his wishes – we shall see what this week brings. If Hamada decides against dialysis then all further treatment will stop, we will then return to care under our local Doctor and palliative care will start here at home.

As Summer fades and the air is filled with signs of Autumn.

As the leaves start their change in colour and their sprinkling fall;

the rhythm and flow of life continues its clever path.

This in-between state that suspends betwixt the seasons is all my heart desires.

To call on the Gods to allow a stay with compassion,

cleverly keeping this season of harvest and life.

Protect and preserve these mere moments of joy and utter no anguished change for me,

as grateful diamonds of joy, spill from my heart.

Take these vibrant days of colour with their smiles intact, allow for NO fear,

for you have always been my brave one but you are more so now.

Do not snap and break this plan I ask,

keeping this Autumn complete and in my whispered prayers.

All Rights Reserved @ 2010

Photo from Susie Hemingway’s Collection.

Just to let you know that Hamada has completed his first week on Revlimid and so far so good. Back ache which he is coping with but no feelings of sickness or other worrying symptoms so far. Hamada is of course very weary but managing to eat well. First early blood tests are back but we won’t get  the para protein/M-Spike yet. That I presume will be at the end of the first months course. Although sleeping most of the day which is pretty usual, there is a significant improvement in some of the blood readings  Haemoglobin is up a tad and there is a substantial rise in the neutrophills due I believe to the injections of filgrastim three times per week.

July Blood Counts. HB10.06 – Platelets 63 -WC.1.7 NEU –1.04

Aug Blood Counts. HB11.1 – Platelets-71 –WC1.8 – NEU –7.1 !!

Para protein  last reading 21.1  (which for those who don’t understand this very important reading is the number we are fighting to reduce)

We continue to go for weekly blood tests and then ring later in the day to confirm we can continue with this Chemotherapy regime. A real balancing act watching the condition of Hamada’s blood at every stage. Thank you Doctor C and Sister Tracy for this great attention to detail.

On the eve of  Hamada starting more Chemotherapy,I felt it appropriate as we finish our lovely Summer without treatment, to  post once again this short verse  first written in 2008.

My Clock.

How peaceful in this pavilion
as the pendulum is free to swing,
I wish to guard these regulated movements
as you oscillate in free time.
I wish to savour your liberty of actions
your power of self-determination.
I need to imprison and restrain this time,
to mend this clock of mine.

All Rights Reserved – June 2008

The following poem was found in my Grandson’s text book at the end of term. Nothing has been changed, it is just as it was written. It brought tears to my eyes when reading but I wanted to share it with you.

Emmanuel (Manu) is 10 years old.

My Grandpa’s really kind,

I knew he’d go to heaven,

since he got bone cancer,

when I was seven.

I think he laughs at any joke,

whether it’s good or bad,

and if he thinks it’s really good,

he laughs like he’s gone mad!

Usually he has to sleep,

since he needs his rest,

so when he is awake

he’s always at his best.

Before he ever got ill,

he used to play with me,

I used to kick a football

to him and back to me!

Alas not anymore,

we only laugh and talk,

it doesn’t stop me loving,

even if he can barely walk.

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.

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 4^th Anniversary of Hamada’s diagnosis of Multiple Myeloma. May 2010.

Copyright @ Susie Hemingway 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 “Don’t Dream Is Over” by Crowded House  Written by Neil Finn 1987

Photo courtesy:  Matt Rutherford www.mattrutherford.com

© Susie Hemingway 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.