Maintenance #8

It's Friday and this has been a truly busy week !

On Monday, finishing at 2am on Tuesday, I was involved with my voluntary work.  Later on Tuesday morning I was in Bristol for my monthly myeloma clinic.  Yet again, and having had the ubiquitous blood test, I was prescribed this time for maintenance cycle number 8.

On Tuesday afternoon we were first joined by our elder son, his wife, and our grandson (now 6 years old).  Later our younger son arrived and we all sat down to the first of several family meals.  Margaret is an excellent cook and always seems to have the correct ingredients (despite a certain supermarket).  I managed to watch the Festival of Nine Lessons and Carols.  Given the modern commercial emphasis, it seems more than ever necessary to remember what Christmas is really about.

Wednesday was, of course Christmas day which started with sounds of glee from our grandson.  On going down the scene was one of multiple presents and a very happy young man.

Yesterday was rather more peaceful and our younger son and I were sent to buy bread.  On the way we stopped to admire our village church of St. Andrews.

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This is a 15th century parish church.
The interior features a finely carved rood screen which was installed in 1522.  The font was carved during the early 1400s but is considerably older.

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As we gazed up at the 100 foot tower, a gentleman came up and started to talk to us.  I remarked how difficult is to hear the bells because many of the original openings had been closed over.  He then invited us to climb the tower!

Soon we were in the room where the ringers assemble.  From the room is a window looking down over the interior of the church.  At a further level we were shown the 1844 clock mechanism.

Soon we climbed further and entered the gallery where there are ten bells arranged over two levels.  Climbing higher we finally emerged on the roof.  Although the weather was not especially kind, the view was never-the-less truly fantastic.  This will be a memory to treasure given by our very generous guide.

Now today, all our guests have departed.  The house seems strangely peaceful.

Christmas is a season not only of rejoicing but of reflection

Winston Churchill

I wish everyone a very happy and healthy new year

Keep well
Stephen

Maintenance #7

The title of this post says it all - I've been prescribed for maintenance cycle number 7.  My platelet count remains below normal, but is within safety limits, and is within the criteria for the Myeloma XII clinical trial.  Dare I risk saying that I actually feel quite well?  I've recently been installing a new cooker hood in our kitchen; a task that has involved several physically difficult steps.

Since the last post we've had the pleasure of a visit from our elder son, his wife, and our grandson.  This coincided with my annual honour to participate in the Lord Mayor of Bristol's Remembrance Parade.  This starts by assembling in the Bristol City Hall then processing to the cenotaph for the traditional service.  We the return the way we came.  It is so special to see so many members of the public, often with children, who have taken the trouble to attend the ceremony.

Each year I provide a Remembrance cross which is planted by the Royal British Legion in the Field of Remembrance at Westminster Abbey.  This year it was opened by  HRHs Duke and Duchess of Sussex. 

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Poignantly, our grandson gave me a Remembrance cross which I labelled in memory of my uncle, his great great uncle, before planting it at our local village church. 

Let us hope that his generation will grow up to understand the horror and futility of war.






It seems right to continue to offer a piece of music.  This one is always played as part of the Remembrance ceremony at cenotaphs.

Dido's Lament by Henry Purcell

Keep well
Stephen

Maintenance #6

If you have been following my recent posts then this one's title would suggest that I have a better platelet count.  In fact my count today was 70. Normal is 150 to 400. With a beaming smile my trials nurse announced that the trial organisers have reduced the criteria from 75 to 50.  Accordingly I have been prescribed for Maintenance Cycle #6.  Excellent news indeed.  I can only guess that other patients have been exhibiting similar platelet problems and that it is considered safe to continue (albeit in my case with a reduced dose).

As I get older (don't we all?) I have come to enjoy experiences more than possessions. For my birthday Margaret generously bought me a half day "experience" at the International Center for Birds of Prey (www.icbp.org).  Despite rain showers, we managed to fly a variety of birds.  Each one was encouraged, with food, to fly between us landing on our gloved hand.  It is truly wonderful to have a wild bird fly towards you.  It was also something of a surprise to discover just how light even large birds can be.  After a warming cup of coffee and a biscuit we moved into an indoor area where yet more birds were displayed and flown.  Finally we were allowed to hold yet more birds so that photographs could be taken.

This picture shows me holding a Laggar Falcon.  These are nocturnal so he had been wearing a head cover.  It was an honour to be holding him when the cover was removed.

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Just days later, Margaret called me to a window from where she had noticed this common buzzard.

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We often hear the buzzard's plaintive cry and see them high above us.  We have never seen one this close though.

I thought a change from sayings might be welcome. Instead then I recommend a piece of truly inspirational music:

The Pie Jesu from John Rutter's Requiem
Click to listen

Keep well
Stephen

Setback Sorted - Maintenance #5

I forgot to update readers with my situation.  I did return to clinic at the limit of extension to my trial cycle number 4.  A further blood test required another extended wait for laboratory results.  Eventually I was told that the result was sufficient to continue onto maintenance cycle 5.  Accordingly I then waited for my medications to be dispensed.  Only when I went to the pharmacy was I told that they didn't have stock of the reduced dose Ixazomib: I would have to come back when it had been delivered.

Two days later I was advised that the medications were now available for collection so I drove, yet again, into Bristol.  At first my package could not be found: A matter which required a "certain amount of patience" on my part!  Luckily it was found and I'm now into maintenance cycle number 5.

One extra detail to report.  Having had paraprotein readings of 6 for some time, and thus a plateau, my latest consultant's letter indicates a rise to a count of 7.  Best not to draw any conclusions yet.

Any time you suffer a setback or disappointment,

put your head down and plough ahead.

Les Brown

KBO and Keep well
Stephen