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  If not, then I will be withdrawn from the trial and placed on "wait and see".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