Early Christmas Present

I attended clinic again this week and with an expectation that my myeloma would be deteriorating.  I was wrong!  My blood test taken in October showed a further paraprotein count of 8 - just the same as that taken in August.  It would seem that I am currently, and happily, in a period of plateau.  My full blood test taken at the appointment showed everything to be normal.

So why had I expected worse results especially as I have no new symptoms?  I have spent much of my career as a communications engineer thus thinking like an engineer and tending towards being proactive rather than reactive.  I am aware that some myeloma patients are desperately upset when told they have relapsed.  I had sought to prepare myself for relapse.  As it transpired I need not have!  Perhaps amusingly, the Trials Nurse had come to talk to me whilst I was waiting to be seen by my consultant.  I had interpreted her presence as a further indication that things were worsening!

The consultant said, and I paraphrase, "you have some way to go yet".  I do not have to attend clinic for another two months. This is truly good news and an "early Christmas present".

Since my last post, the most notable event has been my attendance of the Remembrance Ceremony in Bristol.  As a magistrate, I have the honour of being invited to join the Lord Mayor's procession to the Cenotaph.

Last year, due to major building works, the ceremony was held elsewhere in the city.  This year there was something of a dash to have everything ready for the return to the cenotaph.  Just as in previous years, the public support for the event was truly extraordinary.  For over 20 years the weather has always been good.  This year we were treated to a thorough wetting with both rain and hail.  Everyone respected the occasion and remained in their places.  The picture shows the centotaph after the ceremony and now cleaned, resplendent with wreaths and surrounded with the new paving.  Well done Bristol !

I offer no quote this time but do wish you a very happy Christmas and a peaceful, prosperous and, of course,  a healthy New Year.

Stephen

Comfortable Situation

I attended my consultant's clinic today and, as usual, provided blood for testing.  Considering my paraprotein, while I had been on maintenance therapy, this had been undetectable.  In December there was a suggestion that this happy situation was changing.  In April my PP had risen to 5.  In May it remained at 5 and accordingly I was withdrawn from the clinical trial.  In June the PP had only risen to 6 and suggested that I might be following a plateau.  The last test, taken in August,  has shown the possibility of a gentle rise to 8.  It would seem that two things need to be considered.  Firstly, my general blood tests, which check such things as haemoglobin and platelet levels, show no deterioration. Accordingly no myeloma treatment is required.  I need to be realistic though.  The maximum level of paraprotein I ever reached was only 57.  Clearly I have some way to go though.

I continue to see my many friends at the Bristol Haematology and Oncology Centre.  I have the reassurance that my health is being very carefully monitored.  The fact that I need not return for another two months (in December) indicates that my consultant is comfortable with my situation: so am I !

Since my last post, the most significant event has been a trip to the sun-kissed island of Crete.  We flew from Bristol to Heraklion, in which city we spent a very comfortable week in a hotel next to the old harbour.

Arriving in September, the temperature was typically in the mid-twenties each day.  The journey out had been spoilt by Bristol Airport's determination to expand quicker than its facilities - the long-stay car park, which we had pre-booked, was full ! The easyJet flight was late taking off being late arriving from its previous journey.  This must be inevitable if they develop such tight schedules. Heraklion airport is, well, Greek !  Our hire car was in generally good condition and efficiently provided.  The drive to our hotel was the usual experience of a strange car driven from the wrong seat and on the wrong side of the road, and in the dark.  Google maps did an excellent job and guiding us though.

During our stay we made the obligatory trip to the Minoan ruins at Knossos.  Fortunately we had previously visited the archaeological museum in Heraklion and had already bought tickets.  We thus did not have to join the seemingly endless entrance queue.  The site is huge and impressive but at some time the decision had been taken to provide reproductions of what was thought to have once existed.  The effect was something out of Disney.  We did visit another site at Phaistos.  It had fewer visitors, was smaller, and seemed more friendly.  Again, however, there was evidence of modern concrete.  That trip was made slightly inconvenient as the route to Phaistos passed through a town which had closed the road for a Saturday market !

Our return journey was to include waiting in Heraklion airport for the (yet again) delayed easyJet flight and a long walk once back at Bristol airport.  "Time to spare; go by air".

Despite the occasional discomforts of our trip to Crete, I feel very well and comfortable with my situation.

Be happy with this moment, this moment is your life

Omar Khayyam

Keep well

Stephen

Stability

Today, I attended my clinic appointment.  As always I had blood samples taken before seeing my consultant.  It is customary for the "full blood test" results to be available there and then.  My consultant was very upbeat.  My paraprotein level has only raised from 5 (in both April and May) to 6 at my last appointment in June.  Significantly, the results of today's "full blood test" were all very good.  That test includes Haemoglobin, White Cells, Neutrophils, and Platelets.  All show excellent levels meaning that the myeloma, although detectable, is not affecting the way my bone marrow is performing.  The fact that my results were better than two months ago also indicates that the effect of the medication I was taking during maintenance (which suppresses some bone marrow activities) has now worn off.  Certainly I continue to feel very well with lots of energy.  It would seem that I have commenced a period of plateau which could last months, even years.  Right now, I need not see the consultant for a further two months.

Immediately following my June clinic, Margaret and I travelled to Gibraltar for a short stay.  This British territory is steeped in history and deserved to be visited at least once.  Margaret had found and booked an excellent hotel which was within easy walking distance of the main street.  Once we had consulted the tourist centre, we also found it fairly easy to get around.  I was determined to visit the World War 2 tunnels and this formed our first excursion.

When combined with previous tunnels from the 18th century, the WWII tunnels resulted in there being more tunnel miles inside the rock than road miles outside!

A taxi journey took us up on top of the "rock" to first see St. Michael's cave which is so big that music concerts are held there.  Given the moisture levels, waterproof clothing would seem necessary.

From there we were treated to the dubious pleasure of the rock's apes before we we taken to visit the 18th Century tunnels.

The authorities have done an excellent job of restoring and displaying the many artifacts inside the tunnels and thus telling the story.  Also of note are the many opportunities to look out from the galleries and to take in the extraordinary views.

In the foreground is the northern edge of Gibraltar's town.  Running East/West is the runway beyond which is the airport terminal.  Immediately beyond (where there is woodland) is Spanish territory.
Packing so much into such a short time, we also visited the southern-most tip where we could just about see the North African coastline.  We also visited the East side of the rock where, unlike the West side which is one big city, the East side is relatively undeveloped and certainly more peaceful.

Following our trip to Gibraltar, Margaret travelled to Harrogate for a literary conference.  Yorkshire being my place of birth, I joined her and we met a significant number of my relatives.  One cousin and her husband, by chance, had come from Australia.  Another cousin and her husband had travelled from the island of Islay.  I used the opportunity to hand out copies of my book (see April post) but of course also to catch up with everyone's news with 11 of us sitting down for dinner together.  I greatly value such reunions.

When you arise in the morning, think of what a precious privilege

it is to be alive - to breathe, to think, to enjoy, to love

Marcus Aureliu

Keep well

Stephen

A New Chapter !

In my last post, I reported that my paraprotein had risen to a count of 5.  I had noted that a further such count would cause me to be taken from the Myeloma XI trial.

Well, today I had the clinic appointment that I have been waiting for.  My paraprotein count remains at 5.  Accordingly I have been withdrawn from the trial.

But all is not bad.  Since it has remained at a count of 5 it is possible that I am now entering a period of plateau.  Although that doesn't suit the trial protocol, it does not necessarily mean that I am relapsing. Only time will tell.  My consultant is confident enough to not need to see me for two months now.  It remains to be seen whether the medication I have been receiving, Lenolidamide, was actually controlling my myeloma.  Certainly leaving the trial means that I no long have to take it and have to accept its side effects.  It would thus seem I am entering a New Chapter.  I certainly have no reason to complain.  I have received a total of 60 maintenance cycles, each of 28 days.  Quite simply I have been fit and well for five years since stem cell transplant and have achieved so much.

18/6/17 - As an addendum, I have now received my consultant's report letter in which she says that "the level indicates technical progression of [my] myeloma".

Since my last post, I have been as busy as ever.  Margaret and I found time to spend a few days in Portsmouth.  Margaret had spent the initial part of her career here and it is where we "courted".  For this return trip we stayed in a very comfortable hotel on the front in Southsea.  From there we were able to visit Portsmouth's sights.

The weather was less than optimal, but our first stop was the Spinnaker Tower.  Despite the many changes since we were last in this area in the 1970s, we were able to look down on so many places that brought back memories.  We were even able to watch the Royal Navy frigate HMS Iron Duke leave port.  Our younger son kindly joined us for lunch making the trip even more worthwhile.

From here we entered the Historic Dockyard initially looking around HMS Warrior.  Launched in 1860 she was the first iron-hulled battleship.  We then proceeded past the iconic HMS Victory which both of us had previously visited.

We then spent some considerable time looking around the fascinating Mary Rose Museum.

The Mary Rose was once the pride of Henry VIII's fleet having been launched in 1511.  She sank in the Solent in 1545 taking most of her crew with her.  Those of us of a certain age will recall the moment when in 1982 she returned to the surface.  There was a frightening moment when part of the support cradle broke and we feared she would return to the sea bed.  For many years she was given preservative treatment.  Now she is in a permanent building within the dockyard where her story and that of her crew is now told.

The next day Margaret and I, using Portsmouth as a base, journeyed first to the Weald and Downland living museum.  The weather was fortunately kinder and we were able to wander amongst the many historic buildings which have been rescued and rebuilt in this beautiful landscape.

We had lunch here before journeying to the Tangmere Military Aviation Museum.  You will have guessed that the museum is located on the former RAF Tangmere which figured so much in the Battle if Britain.

During our walk around the museum, I was invited to "fly" their English Electric Lightning simulator. Sitting in the cockpit I was tutored to take off from Tangmere and to fly over to the Isle of Wight, followed by a return down to 100 feet over Portsmouth (!) before again landing at Tangmere.   The experience seemed to typify the welcome we received.  Of the very many aviation museums I've had the pleasure to visit, Tangmere is unquestionably, the best.  Excellent exhibits, in perfect condition, superbly presented and explained by knowledgeable personnel - just brilliant.

That evening, having returned to our hotel in Southsea, we treated ourselves to an excellent meal at the Still and West.  This pub/restaurant was very much part of our earlier time in Portsmouth.  It looks out across Portsmouth Harbour towards HMS Dolphin, once the home of the Royal Navy's submarines.  The food and wine were excellent and we were never short of something to see out of the windows !

Finally a brief mention of the weekend when the family joined us.  It was wonderful to have them stay.  The BBQ went on long into the evening !

Life isn't measured by the number of breaths you take

but the number of moments that take your breath away.

Keep well

Stephen

Possible Change

First the good news:  We enjoyed yet another wonderful holiday in Cyprus.  This will be the last in our holiday home there as, yes, we have finally sold it !  The couple who have bought Villa Berengaria seem as excited as we were 12 years ago and we hope they will be as happy as we have been there.  Inevitably some of our last visit was taken up making sure that everything was in order but that was almost a labour of love.

The house went out of its way to put on a show for us:

Firstly, the lemon tree excelled itself by producing a huge crop.  As the house was still ours at the time, some fruits found their way into an odd gin and tonic, whilst others were "exported" with us to Somerset !

I had pruned the bougainvillea right back to its skeleton last autumn.  As hoped, it responded by putting on a truly magnificent show for us.

That was the good news, so now the perhaps not-so-good news.  To remind you, I have been on maintenance treatment for myeloma since July 2012.  For most of that time I've been in remission. At my latest clinic, my blood tests show a possible (and I stress possible) relapse.  Relapse is inevitable at some time - it's the nature of myeloma.  At each monthly appointment, I have a full blood test which checks such things as my white and red blood counts, my platelet count, and liver and kidney functions.  In addition I receive the results of tests from my previous appointment.  This latter information requires that my samples are sent away for laboratory testing.  There are two main tests:  The first is for paraprotein (secreted from active myeloma).  The second is for free light chains (kappa in my case). Whilst the kappa has remains stable, the paraprotein has risen to a count of 5.  If this is repeated at this appointment's test (I get the result at my next appointment) then I will no longer be considered to be in remission and I will be withdrawn from the trial.

Assuming I relapse, it remains to be seen what happens next.  If tests indicate that the myeloma has again become active then I can expect to initially receive medication.  Precisely what that will be will depend on a number of factors, including my preference.  In the medium term, I would hope to have a second high dose therapy and stem cell transplant.  My last one in 2012 produced an excellent response and I'm certainly fit enough for another.  Most importantly, the development of new medications has revolutionised the treatment of myeloma.

Perhaps the worst part of all this is the waiting.  I attend consultant's clinic every 28th days.  I now must wait until the next visit to discover the test result.  In the meantime, I have "reverted to type" and am actively researching my options.

I take something positive from this.  We have sold Villa Berengaria at exactly the right time.  I had in mind to return to private flying. I will now put that ambition on hold for a while.

Patience is the companion of wisdom

Saint Augustine

Keep well

Stephen

A Spring in my Step

As previously mentioned, I decided to pause adding posts.  The previous one was in January, during what turned out to be a surprisingly (but welcome) benign winter.  We had no snow that settled, and I only had to clear ice from my car on two occasions.

Spring is now truly with us and was first signalled by the primulas.  They seem so fragile and yet survive all manner of abuse.  Those that come up in the lawn (sorry: area of green moss) get mowed and yet reappear time and time again.

And as if to compete, the magnolia has excelled itself this year.

Of course the petals are falling like confetti, as was exemplified when I shook the tree before mowing them up.  I looked almost matrimonial !

Perhaps the most significant event since my last post is that I have completed writing a book about my Uncle Stephen, who was killed in the Second World War and after whom I was named.  With some effort I then succeeded in having it published using a wholly on-line system.  The artwork for the cover is slightly off-centred but I am content.  

The purpose of the book is to create a truly lasting memorial.  It is noteworthy that a web site is not.  I have now submitted copies to the British Library and the five other Legal Deposit libraries so I have achieved my ambition.  Other copies have been sent to the RAF Museum, to my uncle's former school, and to members of my family, Should you be so interested, the book is available through Amazon on Kindle and also as a hardback.  The latter is subject to print-on-demand which may take some time to arrive.

Since last writing, I am pleased to report that my cancer remains in remission with my consultant's expressing their continued satisfaction.

This month's saying comes from something I noticed on the TV and rather sums up my attitude:

Do what you can't

Keep well

Stephen

All Still Good

Happy New Year!

The Christmas holiday passed successfully with a very enjoyable family lunch with both our sons and their wives, our grandson, and a rather cuddly dog!  Soon after there was the usual rush to take down and pack away the decorations.

This week I visited my consultant's clinic and, I'm pleased to say, all is still good.  My paraprotein remains undetectable and my Kappa has fallen a little.  Above all, I feel well.  All I have to do now is keep warm and wait for the spring.

This month's quote then is:

It is health that is real wealth, and not pieces of gold and silver

Mahatma Gandhi

Keep well

Stephen