The Odyssey Continues

Spring has arrived

I should first perhaps explain the rather cryptic title of this post.  By definition, an odyssey is a long series of adventures especially when filled with experiences, a progress of one stage of life to another.  It seems that odyssey perfectly relates to myeloma.  Anyway I'm bored with the term "journey".

About four weeks ago I started to experience sharp pains in my breast bone.  These gradually became worse and often spread throughout my chest.  Coughing, sneezing and even laughing became less than comfortable. Bone pain is one of the symptoms of myeloma but this was new.  My previous experience was of a dull ache; this was much sharper.

It was thus a relief to report this to my consultant this week.  As usual, and prior to my appointment, I had a blood test.  Given the pain, I had expected that my counts for red and white cells and platelets would have deteriorated.  But they hadn't and my paraprotein level, as measured at my last appointment, was still rising at a fairly constant rate.  Never-the-less my consultant has presumed, like me, that I have relapsed.  Accordingly we discussed my options.

Having prepared myself for the meeting, I was pleased when we agreed that I should be recruited onto a fairly new clinical trial called Myeloma XII.  First I would need tests to confirm my relapse and to ensure that I qualify for the trial.  The tests will include a PET-CT scan, a bone marrow biopsy (oh joy!), an echocardiogram, and yet more blood tests.  

My next appointment is in three weeks and hopefully by then the results of the tests will be known.  I can then recommence my odyssey !

Onto much a much happier theme, during Easter, our younger son visited.  Then last weekend our elder son, his wife and our grandson visited us.  Such events are so enjoyable and reflect the closeness of our family.

You don't choose your family

they are God's gift to you, as you are to them

Desmond Tutu

Keep well

Stephen

Wonderful Experiences

My previous posts have recorded that I was withdrawn from the Myeloma XI trial because my paraprotein had again become detectable.  More recently there was a suggestion of a plateau.  My latest blood test result, taken in early December, shows a further increase in count to 10 perhaps suggesting a slow move towards relapse.  I don't seem to have any recognisable symptoms and my general blood test results (haemoglobin, white count, neutrophils and platlets) don't show any deterioration so, at this week's clinic, my consultant remains content for me to not return for another 2 months.  Only time will tell.  In the meantime I am relishing life!

Here we are well into February and I choose to write about Christmas - but with good reason !
Christmas for us starts with attending a concert featuring Handel's Messiah. Unusually, in 2017 there was no performance in Bristol.  Much to my surprise Margaret booked seats in the Royal Albert Hall.  We travelled up to London by train and booked into her favourite hotel.   After an enjoyable meal we walked the short distance up Exhibition Road to the Hall.  Taking our seats, the quality of the decorations was immediately apparent.

We then saw how many choir members there were combining: Goldsmiths Choral Union, English Concert Chorus, Highgate Choral Society and the London Chorus.  I estimated 400 choristers.  The official web site suggests 500 !  You can try to count if you like. They extend right up both sides of the organ.  They were supported by the Royal Philharmonic Orchestra conducted by Brian Wright.
The music was sheer bliss and the audience was suitably appreciative.  The applause was almost as loud as the music had been.  All in all, an extraordinary experience, and never to be forgotten.

Breaking with tradition, we celebrated Christmas at our elder son's home.  Having only recently moved into their new home he and his wife entertained a total of ten people for Christmas lunch. It was truly wonderful to meet up with everyone at such an enjoyable occasion. Our younger son kindly accommodated us in his flat so we wanted for nothing over the festive season.  We had much to be thankful for.

Joy in looking and comprehending is nature's most beautiful gift

Alber Einstein

Keep well

Stephen

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