A Power Within

Category: Health Issues Page 3 of 6

The Start Of The Final Journey

23 November,

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 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

Night Vigil

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?

Such A Difficult Time.

 

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…

“Changes” – November 2010

Girl walking out to Sea - Nov 2010

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

Time For A Top Up.

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

Autumn Days.

Autumn Days Of November2010 009

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.

Autumn Days Of November2010 011

This Rollercoaster Life – by Susie Hemingway

Rollercoaster_Tornado_Avonturenpark_Hellendoorn_Netherlands

 

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.

Oh This Rollercoaster!

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 ? !!!

The Peaceful Feeling Decisions Bring.

Flowers Left In Porch - Oct 2010 006

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.

Not Good Days.

Garden Oct 2010 001

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 – A Cancer Prayer – by Susie Hemingway

Autumn Shots 2010 003

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.

Hamada doing OK

 

Hamada @ Hemingway 2006

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.

My Clock – by Susie Hemingway

 clocks

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

Grandpa by Manu – July 2010

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.

 

Fathers Day Weekend at Hemingway 2010 005

Sadness At News.

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.

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