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

Another Setback

First the setback to my treatment and then details of our holiday.

I attended clinic as intended as soon as we got back from holiday.  My appointment should have been whilst on holiday so I was extended from the normal 28 days by a further week.  You will recall that in August, I had exhibited a low platelet count.  Yet again my count was low and had prevented me from being prescribed for maintenance cycle 5.

Today I returned for a further blood test and again my count was too low.  I shall be returning next week - at which point cycle 4 will have been extended by 3 weeks.  This is the maximum allowed by the clinical trial.  If my count has increased sufficiently then I will be prescribed.  If not, then I will be withdrawn from the trial and placed on "wait and see".  This would be most disappointing.  It seems that the trial drug, Ixazomib, can cause the production of platelets to be degraded.  Added to that, I have a cold which can have a similar effect.  I will just have to be patient.

As mentioned, Margaret and I have just had a holiday, this time to Croatia.  I had visited the area several times with my parents when it was part of Yugoslavia.  Now the various states have become independent of each other following the 1990s Balkan conflict.  Our holiday started less than well with a delayed Easyjet departure from Bristol to Split.  We arrived just 2 minutes short of 3 hours late.  This had caused problems as we were due to meet up with another UK flight before being driven by coach for the 1 hour journey to our hotel in Vodice.

Waterfalls in the Krka Valley (Click to enlarge)

The next day, all was well and we thoroughly enjoyed a visit to the Krka Valley National Park.  This comprised many linked boardwalks through woodland and over multiple streams.  After a snack lunch we were treated to a boat ride before our return to the hotel.




The next day featured a visit to the city of Split and a guided tour of the remains of the Diocletian palace.  Sadly this and the free time in the city was marred by huge crowds (probably resulting from cruise ships).

Our fourth day included a trip to the town of Mostar (over the border in Bosnia).  Prior to the breakdown of Yugoslavia this was simply a two community town with Muslims separated by a river from Christians.  During the fighting, the bridge which linked the two communities was destroyed.  It was subsequently rebuilt and the town has become a magnet for tourists (like us)

The Bridge at Mostar (Click to expand)

Breaking away from the crowds, we were fortunate to find a restaurant with this magnificent view of the bridge.  We even witnessed the practice where men jump from the bridge to the river nearly 79 feet below.

Sadly the town also displayed several buildings pock-marked with bullet and shell holes.



After Mostar, we travelled by coach to Dubrovnik again passing first into and then out of Bosnia.  The border checks were excruciatingly slow.  Here we stayed for the remaining four nights and visited various destinations including entering Montenegro and also the city of Dubrovnik itself.  Again, and sadly, the city was overloaded with tourists and again probably due to the presence of cruise ships.

After a trip which included many wonderful sights, but also excessive crowds, we were driven back to Split for our return flight to Bristol.  Easyjet, or more precisely the handling agent DHL then delayed the return of our baggage. Rant over !

We must accept finite disappointment,

but never loose infinite hope.

Martin Luther King jnr

KBO and Keep well
Stephen

Maintenance #4

From the title, readers will realise that I have good news.  After last week's less-than-good news, today I again attended clinic and after one scare, the news was good. 

To remind you, when I attend clinic I receive a blood test.  This is analysed in the unit whilst samples are also sent to the hospital laboratory.  The unit's system reported my platelet count at 67 and thus too low to return to treatment.  Fortunately the laboratory result, which came through during a rather extended wait to see the consultant, was much more welcome at 82 and thus qualifying me to continue.  Last week's paraprotein result also suggested a plateau so I was prescribed the necessary medications for maintenance cycle number 4. Wow.

It seems to have been so much effort and anxiety for just three capsules of Izazomib and the two prophylactic medications.

But it's truly worth it !












KBO

Keep well

Stephen

Possible Setback

I attended clinic today and became aware of two matters:  Firstly that my paraprotein which had been at a count of 3 in May, had risen to 5 in June, and to 6 in July.  If it rises any more I will probably be taken off the Myeloma XII trial.  The second piece of news was that today's blood test had indicated a platelet count lower than is safe for me to continue, at this time, onto Maintenance cycle #4.  It is currently presumed that the cause is the toxicity of the trial medication, Ixazomib.  I shall return for further blood test next week to see if things have settled down.

Both pieces of news are rather disappointing and potentially throw some of our plans into doubt.

On a more positive note, my two sons treated me to a fantastic experience - a flight in a de Havilland Tiger Moth.

(Click to enlarge)

The story starts in 2005 when I won a  competition at Old Warden.  The prize was a flight in either a Miles Magister or a Tiger Moth.  Knowing that I could always purchase a Tiger Moth flight later but that no such opportunity would exist for the Magister, the choice was obvious.  This particular aircraft ended its RAF service in 1942.  I was flown Rob Millinship who  allowed me to fly it for most of the sortie.

(Click to enlarge)

My dream to fly in a Tiger Moth finally materialised in July and required an evening drive from home to Eaglescott Airfield in north Devon.  Such flights are very much weather dependent and required that we first drive to Tiverton and phone ahead to see if conditions were suitable - they were.  Having helped to get the aircraft out of the hangar, I was guided into the front cockpit.  Once the engine had been hand started the instructor, Barry, climbed into the rear cockpit.  He then taxied us to the runway and to a leisurely take-off.  From then on, Barry had me fly the Moth whilst he provided an almost continuous commentary on what we could see as we first headed to Barnstable.  We passed over the former RAF Chivenor and thence north to Putsborough beach where the American forces practiced for the D Day landings.  Our flight continued south with magnificent views of Appledore, Bideford and RHS Rosemoor.  Barry continued his commentary all the way back to Eaglescott where he had me circle the airfield whilst we descended.  He even let me land the Moth !  How can I possibly thank my sons for this?

The week after the Tiger Moth flight, Margaret and I had the pleasure to visit our two sons, our daughter-in-law and our grandson.  It was wonderful to see them and to enjoy a memorable evening meal with them.

If life throws you a lemon, add gin

Anon

Churchill's saying seems especially apt this time given not-so-good news: KBO

Keep well

Stephen

Maintenance #3

Since my last post, life has been especially enjoyable with a holiday cruising the River Douro in Portugal.

The Dom Luis bridge which links Villa Nova de Gaia to Porto (Click to enlarge)

Having flown from Gatwick to Porto we transferred to our boat, the Douro Queen, which was moored at Villa Nova de Gaia.  The town is the famed location of many Port wine houses (one of which we later visited !).  Across the river is the city of Porto and looking up the river is the iron bridge of Dom Luis opened in 1886.  This is often confused with another similar bridge, further up the river which was designed by Gustav Eiffel and opened in 1876.  The Dom Luis bridge features two decks, one high, one low.  Teanagers are often seen jumping from the lower deck, a practice seemingly accepted by the authorities!

Later we were joined by other passengers who had flown in on another airline.  That evening we were treated to a delicious buffet dinner washed down with local Douro wines.  The tour was "all inclusive" so the waiters did their best to keep our glasses well filled.  Soon after dawn the next morning we departed Villa Nova de Gaia for our trip up the river, eventually through 5 locks and for about 125 miles until we reached the Spanish border.  Day after day we watched the magnificent scenery slip past, often featuring vineyards many of which hugging the steep slopes with multiple terraces.  These are the source of both Port dessert wine and Douro table wine.

The serene scene at dawn looking down the Douro from the Spanish border (Click to enlarge)

Eventually our boat reached the Spanish border where we moored for the night.  The image, taken from our balcony, shows the truly serene scene at dawn.  The only ripples were caused by the fish as they rose to feed.

That day we had a full day trip to the spanish City of Salamanca.  The coach journey lasting 2 hours was rewarded by arrival at a 5 star hotel, a walking tour of the city, and a superb lunch including Flamenco dancing - what a treat!

Somehow the voyage back down the Douro was different.  Certainly the view from our cabin was of the other bank !  Having arrived back at Villa Nova de Gaia we felt it only proper to visit the Port wine house of Calem where we were indulged with a tasting of both white and tawny ports.

It was only polite to try these two very different wines.  The Calem Fine White Port is best served chilled and as an aperitif.  The Special Reserve Port has been aged for seven years and compared favourably to a vintage port we had tried on the boat.  Needless to say, I saw fit to purchase such delicious wines.

Our last day included a tour of the city of Porto visiting the Cathedral and viewing the many Azulejos (painted tiles).

After just one week, the time came to return to England.  We landed back at 11am.  The other group who flew back later that day were almost certainly affected when Gatwick operations were suspended for two hours.  We had been very fortunate.

As previously arranged, we now had to drive from Gatwick direct to Bristol in order that I could have a blood test in preparation to receive medications for Maintenance cycle 3.  

The purpose of life is to live it, to taste experience to the utmost,

to reach out eagerly and without fear for newer and richer experience.

Eleanor Roosevelt

Keep well

Stephen

Maintenance #2

I saw my consultant this week and all seems well.  In May I had received the excellent news that my paraprotein had reduced from 8 to 4. It has further reduced to 3.  This indicates that I am responding positively to treatment.  At this latest clinic, my general blood test results also showed a general recovery (having been previously influenced by the intensity if treatment during stem cell transplant in December and subsequent consolidation cycles).  Also one by one, the side effects of consolidation are wearing off.

As mentioned in my last post, I was also subject to yet another bone marrow biopsy.  It seems that on two occasions since my last clinic, I had been allocated appointments but nobody had told me!  Accordingly I was "treated" to the procedure after the clinic !

Also as mentioned in my last post, age has rather caught up with me.  In the run up to my 70th birthday I was retired from the Magistracy.  At my last day in court, one of the Deputy Bench Chairmen said nice things about me and presented me with this paperweight.

Recognising service in Bristol Magistrates Court, it is made from Bristol Blue Glass.

I should perhaps explain my relatively short service.  Having been previously employed by the local police, there was a period of two years before I could be appointed.



On the weekend of my birthday, my two sons, my daughter-in-law, my grandson, and my favourite dog all joined Margaret and I for a grand "Ken".  (Australians refer to barbecues as a "barbie" so it only seems right to call ours as "Ken").  On the Sunday Margaret and I went out for a slap up restaurant meal.  All in all a great weekend.

I'm now actively looking for another role to keep me busy.  In the meantime my Mazda MX5 (see my August 2018 post, and named Brabinger), which is something of a hobby, has passed its MOT but now requires yet more work.

When purchased, the car did not come with any maintenance records.  Accordingly I don't know if (or when) the camshaft timing belt was changed.   Looking at this image, you will see that the engine is surrounded with pipes and wires, making the task somewhat complicated.  To gain better access, I've taken out the radiator which, on inspection, has needed replacement.  Mazda did not see fit to provide any protection and it was found to be stone damaged.

Since so much stripping is needed to change the cam belt, it also makes sense to change the water pump and the two auxiliary drive belts (power steering and alternator).  I've also found that the front crankshaft oil seal is leaking and will need replacement.  I'll certainly be kept busy !

Readers will be aware that I normally conclude posts with an apt quotation.  I recently found on the net that Abraham Lincoln (16th President of the United States) warned that not all internet quotes are to be trusted !

My quote for this post is:

“Choose to be optimistic, it feels better.” 
Dalai Lama

Keep well

Stephen

Maintenance

During last week, I again attended clinic.  Having now completed two cycles of Consolidation I can, at last, proceed onto Maintenance.  The last two months, just as I predicted, have been rather less than pleasant being characterised by some side effects.  Hopefully they will now wear off.  Maintenance simply involves taking the trial drug on days 1, 8 and 15 of each 28 day cycle.

Once I'd had a blood test, the consultant prescribed me for the first cycle.  It also became clear that I must succumb to yet another bone marrow biopsy - oh joy.  Next week I have my last pentamidine then life will simplify.

Now over 20 years old, our three climbing roses (Princes Trust) continue to delight us.  The first blooms are just beginning to show.  Soon the plants will be covered with fragrant blooms.  The only problem will be the weight of the flowers requiring some judicious supporting









Next week, as I approach the ripe old age of 70, I shall retire from being a magistrate.  More accurately I shall "be retired" since that is what the rules currently require.  To be fair to the system, I have always known this.  I shall certainly not miss the commute into Bristol but I will miss the role.  It has been both challenging and rewarding.  It has also been a privilege to be given the ability to change someones life.  I shall miss the quality of the people on whom the court depends: The witness support volunteers, The court ushers who have to deal with witnesses and defendants (some of whom can be hostile), The Legal Advisors who do their best to keep us lay magistrates within the law, and of course my JP colleagues. I shall certainly miss this and have already started to look for similar positions.

The purpose of life is to live it, to taste experience to the utmost,

to reach out eagerly and without fear for newer and richer experience

Eleanor Roosevelt

Keep well

Stephen

April 2019 Consolidation

This month's consultant appointment was slightly problematic.  At my previous visit in March, it was not possible to allocate this month's.  In the event I was scheduled to attend one week early.  Whilst this suited the booking system, it did not conform with the trial protocol.  My consultant was able to prescribe for the second consolidation but it could not be issued to me until I'd had a blood test within 72 hours of the start of the cycle. Got it? I therefore had to go back again this week for that blood test.  Fortunately everything was OK so I received the necessary medications to continue. 

I had predicted that consolidation could be hard work and I've been proved right.  Inevitably following stem cell transplant just before Christmas, I've been knocked back somewhat.  For two cycles, each of 28 days, I have to take drugs which produce some side effects.  They are tolerable but I shall be glad when this phase of treatment is over.  It is noteworthy, looking at the blood test results, that each measure is somewhat suppressed - probably caused by the medications.  I just have this last month to get through and then I proceed onto maintenance proper, only needing to take the trial drug; Ixazomib.  I'm sure it will be all worth while in the end.

Meanwhile spring has continued to develop.

We have a loggia which connects back door, our patio eating area and our garden hut.  Some years ago I planted a grape vine cutting and since then have trained it under the loggia roof.  Each autumn, it gets severely pruned and I always wonder whether it will re-grow.  Every spring however the vine comes back to life.

The picture shows just one set of leaf buds.  Yet again nature has asserted itself.

I enjoy the spring more than the autumn now. 

One does, I think, as one gets older

Virginia Woolf

Keep well
Stephen

March 2019 - Great News

The weekend marked the 100th day after my stem cell transplant.  In order for me to be randomised for the next phase of the Myeloma XII trial, it was necessary last week for me to attend the BHOC for tests - yet another Bone Marrow Biopsy (my 6th I think), blood tests, urine test etc.  Following the blood tests in particular, I was phoned by the Trials Nurse to give me the fantastic news that yes, my paraprotein level qualified me for the next phase, and that I had been randomised to receive maintenance treatment.  It was maintenance treatment within the Myeloma XI trial that had benefited me so much.  I could not have wished for a better result now.

Yesterday, then, I attended clinic and saw the senior haematology consultant whereupon I was prescribed the necessary medications for the first of two consolidation cycles (each of 28 days).  The drugs involved are the same as I received at the start of the trial and include the trial drug, Ixazomib, with Thalidomide and Dexamethasone.  The latter two drugs gave me some side effects but the end result will, I'm sure, be worth it.  After the two consolidation cycles I will only need to take Ixazomib thereafter.  This drug is developing something of a positive reputation and would seem to be by far my best hope at the moment.

On non-medical subjects, Spring has finally arrived.  The increased temperature has finally enabled me to do some work on Brabinger (my Mazda MX5 !)

The daffodils had not really waited for spring but our magnolia is now putting on a magnificent show despite having been shaken badly during last week's storm Gareth.

Perhaps the very best indicator of spring is the primrose and we are blessed with many (perhaps reflecting the somewhat wild nature of our garden!

For me this spring has brought the emergence from winter and also the fantastic news about my myeloma treatment.  I feel truly refreshed !

The beautiful spring came; and when Nature resumes

her loveliness, the human soul is apt to revive also.

Harriet Ann Jacobs

KBO

Stephen

February 2019 Update

If you watch breakfast television, you may have seen an inspirational appeal by a young boy that people volunteer as stem cell donors in the hope that his father, who has myeloma, might live longer.  The item identified DKMS as a means to register.  An alternative is, of course, Anthony Nolan. 

This then got me thinking about blood donation.  I had once been a blood donor and then a platelet donor.  Over the last few years I have needed platelets for which I am so grateful.  I have also seen patients who are much more poorly than me and are reliant on blood transfusions simply to stay alive. 

This week I attended my routine clinic.  Since the one in January, I have decided to return to my Magistracy duties and in fact have already sat on three occasions.  It's good to be back !  At this clinic all was well although my platelet count was a little low.  The doctor thought this was likely to be due to me having a viral infection (a cold).  Also confirmed was that in January my paraprotein count had reduced to 7 indicating response to the high dose therapy and stem cell transplant which I had in December.  My November count had been 10 and, when I am reviewed after 100 days to see whether I qualify to remain in the trial, I must have a count lower than this.  Only time will tell.

Since December I've gradually put back the weight I lost during my two weeks in hospital. For now, I'm glad to have returned to fairly normal life.

Winter is the season of recovery and preparation

Paul Theroux

KBO

Stephen

January 2019 Update

I feel slightly guilty having not provided any update for a month.

Since my last post I've had two notable hospital appointments.  Firstly I needed a treatment on a medication called Pentamidine.  Because my immune system took something of a bashing, I am at risk of a form of pneumonia.  Normally I would receive a drug called Allopurinol but the last time I was given it, I proved to be allergic.  I thus need the Pentamidine which is administered by inhalation through a nebuliser.  So far I've had one session which takes about thirty five minutes.  I have appointments for a further three sessions after which I should be clear of the risk.  At this appointment the opportunity was also taken to check my blood.  At a subsequent clinic appointment with my consultant and trials nurse, my blood was again tested.  The results show that everything is as expected with just my platelets still below normal but never-the-less safe.

I now need to decide whether I feel well enough to return to my magistrate's duties.  I am very keen to do so and will speak to the authorities tomorrow.

The next major event in the Myeloma XII trial comes at 100 days after treatment.  This will be in March and in preparation for this I will need yet another bone marrow biopsy.  I think this will be the sixth so I'm perhaps dangerously blase about this!  I will then, if I have responded to the high dose treatment, be subject to further randomisation to see whether I receive maintenance treatment.  Only time will tell.

In the meantime it is perhaps also worth mentioning that the BHOC has been keen to ensure that I exercise as part of my recovery.  To this end I was referred to a Macmillan adviser who took the trouble to contact me and check on my progress - all very positive.

To enjoy the glow of good health, you must exercise

Gene Tunney

KBO

Stephen