Hugs !

I attended clinic again this week and I'm pleased to say my results remain good; still no detectable paraprotein and even an improved Kappa reading. Thus, as the end of the year approaches, I'm still in remission.

During my clinic visit I needed to visit the day care unit.  Just for once the ladies who so kindly fed me during my stay on the ward (four years ago) were in their kitchen.  It was wonderful to see them again and to receive such amazing hugs.  I then went to the Trials Pharmacy to collect my medications.  I'm not content to walk through the streets of Bristol with a bag that is labelled "NHS Pharmacy".  It seems to be inviting trouble.  I therefore always repack the contents into my backpack. In so doing, I discovered a Christmas card from the pharmacy team - charming.  I never find my clinic visit a chore and this one was so enjoyable.

Christmas started for Margaret and myself with our customary attendance of Handel's Messiah.  Again, we went to the Colston Hall in Bristol.  We have learnt that, although those held in Cathedrals such as Bristol or Wells can be quite wonderful, we struggle with the cold and draughts!  This year's concert proved to be truly superb; a small but very professional orchestra, an excellent choir, and four wonderful soloists. Yes, we stood for the Alleluia Chorus (a tradition first started by King George II).
Next will be the Festival of Nine Lessons and Carols from King's College Cambridge.  Over the festive season we will be visited by both our sons, their wives and our grandson; traditional and oh so enjoyable.

I was born "a little while ago" and I recall that in my childhood Christmas trees were always real.

They smelt fantastic but as they dried out they started to drop their needles.  They also became increasingly inflammable.  It is therefore extraordinary that instead of the lights we now have, trees were decorated with real lighted candles.  .


I wonder how we survived !





No quote from me this month.  Instead I wish you a very happy Christmas and a peaceful, prosperous and healthy New Year.

Stephen

Remembrance

It is becoming almost routine to report that I have visited my consultant and again my results are fine. Because of this I've been wondering whether this blog is more about my everyday life rather than my experiences of myeloma. In the new year I will probably make my posts less frequent.

Looking at my diary, I've had a very busy month.  Having previously decided to retire from private flying, I never-the-less attended the Military Civil Aviation Safety Day at RAF Halton.  It proved to be most informative though I was reminded just how cold and draughty an RAF hangar can be !  The following day (again don't forget I've retired from flying) I visited an aviation importer to look at an aircraft type - very, very interesting !

I've had two days in court this month and also attended my annual continuation training.

Perhaps most significant was my annual attendance, as a JP, of Bristol's Remembrance ceremony. This year's was somewhat different than previously.  It would normally take place around the cenotaph in Colston Avenue but the area is currently undergoing significant building works.  A new venue was thus arranged in Queen Square.  This proved to be most suitable.

Picture Bristol Post

2016 has also been the year when we remember the WW1 battle of the Somme.  Bristol hosted an extraordinary art installation comprising 19,420 figurines, each in a burial shroud, which had been laid out on College Green and signified the number that died on just the first day of the battle.  I can only describe the sight as deeply moving. 

Picture Matt Cardy/Getty

This months saying was especially easy to choose:

Do you not know that a man is not dead while his name is still spoken?

Terry Pratchett

Keep well, and remember, YOLO

Stephen

Travel and Honour

Firstly I attended my routine clinic yesterday and, again, my results were excellent.  I still have no detectable paraprotein and my Kappa continues to slowly reduce.  My consultant seems so confident in my situation that I was actually seen by the Myeloma Pharmacist thus saving the precious resource of consultants for those patients less fortunate than me.

I didn't need to refer to my calendar this month to know we had been busy.  Margaret spent the early part of the month attending many book-related events.  We then travelled to Cyprus for 10 glorious days.

The view is west towards Aphodite's Rock which is nearly on the horizon.  As you can see the weather was just superb. Our first day was rather too hot at 32 degrees but thereafter it calmed down to an average of 28 degrees.  The lowest temperature at breakfast was 21 degrees !

The wonderful weather also brings problems.  Cyprus has not had normal winter rainfall for two years.  We visited one of the reservoirs and its level was precariously low.  We can only hope that things will improve this winter.

We flew back to Bristol arriving in the early hours of Sunday.  Then on Monday we travelled by train up to London.  We were honoured to attend the Light Aircraft Association 70th anniversary dinner which was held in the RAF Club in Piccadilly in the presence of HRH Prince Michael of Kent.

It was wonderful to be amongst so many like-minded people (pilots !), to eat and drink from RAF crested china and glassware and to be treated to entertaining speeches in such wonderful surroundings.

We stayed overnight in a London hotel before an early start back to Bristol for my monthly appointment.  I shall relish a few days of rest before a planned visit to an air safety meeting north of London !

Collect moments - not things

Ankit Mishra

Keep well, and remember, YOLO

Stephen

A Busy and Rewarding Month

Firstly, this week I've seen my consultant and yet again my results are fine: no detectable paraprotein and improving Kappa.

Again, the title says much of the character of this month.  The month started with a trip to Bletchley Park (now our third visit).  You will recall that BP is famous for its wartime role decoding our enemys' secrets.  The following day we went to the Light Aircraft Rally at Sywell in Northamptonshire.  Sadly for the organisers, the weather was not kind.  Never-the-less I saw much of interest to me - (maybe more in the months to come?).

The highlight of the month was a tiring but very enjoyable trip to Italy.  We flew from Bristol to Pisa and took the coach into Florence, staying for three nights.  Margaret had always wanted to visit this beautiful city.  The photograph shows the Ponte Vecchio bridge.

During our time in Florence we were especially fortunate to meet up with some Italian friends who live in Florence and we first met three years ago.  They treated us to an excellent meal in a genuine Italian seafood restaurant away from the multitude of tourists. (Yes, we were tourists!)

From Florence, we traveled back to Pisa airport by coach and picked up a hire car.  In this we now drove up to the resort of Lerici.  Margaret had chosen our hotel well.  Although it was something of an effort to walk up and down to the harbour, the view from our balcony was just fantastic.

From Lerici we were able to take a ferry and view the Cinque Terra.  The trip took all day and we could see the five villages that make up this extraordinary coast.

The next day we drove first to Genoa and specifically to the Staglieno Cemetery.  This is the location of my Uncle Stephen's grave.  He was killed along with his four crew members during WW2.  You can find more details at my website www.hf694.org.uk.

The picture shows the five Commonwealth War Graves on which I planted five memorial crosses.

After Genoa we drove to the village of Polverara and I walked once again into the hills to where Uncle Stephen died.  I placed a further cross here before we drove to the village church where I placed a poppy on the memorial plaque I had presented in 2013 (70 years after the crash). Given my myeloma, I had not expected to return to Polverara.  I am incredibly fortunate.

Now it only remained to drive back to Lerici and then the following day to drive back to Pisa airport where I handed the hire car (undamaged) back.  After a night in a local hotel we flew back home.  It had been a very busy week but oh so enjoyable and rewarding.

Perhaps only Confucius could have said of travel:

Wherever you go, go with your heart

Keep well, and remember, YOLO

Stephen

A Peaceful Month

After last month's celebration of my 50th maintenance cycle, little has happened since.  I visited my consultant yesterday and being the day after the bank holiday, the hospital was extremely busy.
Again my paraprotein was undetectable and my Kappa was stable.

Looking back through my diary I've had a relatively peaceful month.  One notable event was yet another spectacular concert at Colston Hall.  We were also invited to a lunchtime concert which featured the Choir of St Peter Bexhill-on-Sea.  Associated with this church is a very great and long-standing friend of Margaret.  The concert was in Bristol Cathedral but never-the-less I had not expected what proved to be a very professional sounding choir.  I had the very good fortune to also discover a piece of music I had never heard before - Eric Whitacre's Seal Lullaby.  This is quite enchanting and can be heard on YouTube.

Where words fail, music speaks

Hans Christian Andersen

Keep well, and remember, YOLO

Stephen

Truly Privileged

On Tuesday I attended consultant's clinic and, again, my test results were good with no detectable paraprotein and stable free light chains.  This meant, as hinted last month, that I was prescribed for maintenance cycle number 50. It is now a clear 4 years since I was discharged from having high dose therapy and stem cell transplant.

The significance of my 50th cycle did not go unnoticed  My trials nurse had provided a cake which was shared with my consultant and no doubt others later. For my part I decided to distribute a thank you card to those doctors, nurses and ancillary staff who have contributed to my current happy situation.

It is difficult to express just how privileged I feel to have come this far. In the last four years I have been so incredibly fortunate.  In 2013 our grandson, Finley was born.  I have been able to watch him grow ever since.

Later that in 2013, we travelled to Italy to commemorate the 70th anniversary of my uncle's death in World War II.  This was such a significant event which is recorded on my web site at www.hf694.org.uk

In October 2014 I had the honour to be appointed as a Magistrate. This had been a long-held wish and one which gives me so much fulfilment. 

In November 2015 Margaret and I celebrated our 40th wedding anniversary (which I even remembered!). 

In May this year we travelled to Scotland to witness the marriage of our younger son Chris to the love of his life, Becks: A truly joyous occasion.

Finally, as anyone who knows us will tell you, we have enjoyed so may holidays, especially in Cyprus. 

Through all this and most importantly I have enjoyed the love and support of my wife Margaret.

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

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

Marcus Aurelius

I am truly privileged. Keep well, and remember, YOLO

Stephen

Old Haunts

Again, I recently visited my consultant and my results were good with no detectable paraprotein and low free light chains. I was thus prescribed for cycle number 49. It doesn't take much to realise that next month, if I'm still in remission, I will be prescribed for cycle 50.  The staff at BHOC have made it clear that this will be something of a milestone.  Let's hope that the news remains good.

Since my previous clinic appointment, Margaret and I spent a few days in Northern Ireland. To explain, my first posting after training was to RAF Bishopscourt in Northern Ireland. Originally developed as an airfield in WWII it then became Ulster Radar with two huge radar systems, one on the former airfield and one at nearby Killard point. As such it provided long range surveillance for both civilian and military air traffic.  I joined the communications section providing high power UHF and VHF services.  We even provide the communications for the Concorde supersonic trials which took place over the Irish Sea.  I arrived in April 1975 and we married in the November.  Margaret immediately joined me so in effect we did not have a honeymoon. (we've made up for that since !). We were finally posted away in April 1977.

Being very junior in rank at the time, I didn't qualify for service accommodation so I successfully applied to live "off camp".  Initially we lived in the coastal village of Killough, but soon moved to the charming village of Strangford.  Our return trip started with a visit to the recently-opened Titanic Experience located in the famous docks area.

Well worth a visit, the impressive building houses a combination of audio visual displays which tell the story of Belfast's shipbuilding heritage, the construction of the famous liner and her ultimate demise.

We then drove on to Strangford where we booked into a very comfortable and friendly hotel.  When the weather allowed, we were able to walk around the village and especially to our former home.

Our home, of 40 years ago, was the lower of the only two bungalows in Quay Lane and within yards of Strangford Lough.  Across the lough is the village of Portaferry. During our trip, we were thus able to eat dinner in our own hotel and also, by taking the ferry, to eat across the water.  

Each day we had trips out to the site of the former RAF station and down the coast to Newcastle (with views of the majestic Mourne Mountains, and to National Trust properties of Mount Stewart and Castle Ward.  

This proved to a short but very enjoyable and fulfilling trip. Strangford was, and still is, a very special place for us.

And so to choose this month's saying:

Sometimes you will never know the value of a moment until it becomes a memory. 

(Dr. Seuss)

Keep well, and remember, YOLO

Stephen

Sunshine and Music

Again my consultant is content with my results which are good and I'm still in remission.  I realise that it is time to update my blog and fortunately my calendar, which is always fairly full, gives me inspiration regarding content!

Notably, Margaret and I had an excellent trip to Cyprus again. It was wonderful to feel the warmth of the sun, to meet good friends and to enjoy the island's food and hospitality.

This picture shows our favourite beach at Evidimou.

We always make a point of having lunch here at the beach-side restaurant where we order "222" - that is two grilled halloumi, 2 lountza (smoked pork loin) and two fried eggs. Served with chips, salad, and a shandy it's not especially good for us but oh so tasty!

Yesterday evening we were treated to a concert in the Colston Hall in Bristol. This featured the Royal Philharmonic Orchestra (oh they did sound so good). The first half included "Thus spoke zarathustra", Strauss' Blue Danube Waltz, 2nd movement Beethoven's 7th symphony, and John Williams' Star Wars Theme.  The second half comprised Gustav Holst's Planets Suite which was enhanced by NASA images, projected onto a big screen, of each of the heavenly bodies. An amazing experience! You will have realised by now that the theme was the solar system.

And so to choose this month's saying:

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

but the number of moments that take your breath away.

Keep well, and remember, YOLO

Stephen

Happiness, Pride and a Little Emotion

Firstly, I've just got back from my monthly Consultant's appointment and yet again all is well.

Now to the real news. Margaret and I were treated, last Monday, to the sight of our younger son, Christopher, marrying Becks.  There were few dry eyes in the room as we watched first the four bridesmaids and then Becks and her brother James (who gave her away) walking slowly down the aisle. The ceremony was brief but very beautiful and afterwards, once the obligatory photos were completed, we sat down to an intimate meal with entertaining speeches and excellent food.

As can be recognised from Chris' clothing, the wedding was held in Scotland. Chris, our elder son Nick, and James all wore kilts adding much to this very special occasion. Margaret wore a stole in her family tartan. I confess that I only managed a tartan tie !

Travelling up to Scotland, we took the opportunity to visit two of my cousins, one who lives near Dumfries and the other in Edinburgh.  We stayed in Leith and took the opportunity to visit the Royal Yacht Britannia.  Again, an amazing experience often feeling as though we were invading the privacy of the Royal family.

In the afternoon we took a trip on the river Forth where a new road bridge is being constructed.

Journeying south to Ilkley in Yorkshire we met up with another two of my cousins for an enjoyable evening meal. Finally, what had now developed into something of a tour, we called to see the National Memorial Arboretum before driving on to the Imperial War Museum at Duxford.
Here we saw many exhibits but perhaps the most exceptional was the SR-71 Blackbird.

Margaret and I first met at Farnborough air show in 1974. This was the first time this aircraft type had been displayed in the UK.  Accordingly, the SR-71 is somewhat significant to us.

In summary a wonderful wedding followed by an eventful tour back home.

Having somewhere to go is home,

having someone to love is family,

having both is a blessing.

Unknown author

Keep well, and remember YOLO

Stephen

They say the boidie’s on the wing

Firstly, I visited my consultant and, yet again, my results were good. My Kappa continues to slowly decrease and my paraprotein remains undetectable. Noteworthy was the fact that my general blood tests results, haemoglobin, white count and platelets were all especially good.

During the last couple of weeks I've become aware of the dawn chorus. Living in the country as we do, this can be surprisingly loud. Unusually we also get a sunset chorus. I guess this is from  those birds who have had an especially good day!

That might then explain the title of this month's post. Well not quite.  After my consultant's appointment and when my prescriptions had become available I drove over to Essex.  The route took me on my least-favourite motorways being the M4 (boring) and the M25 (always congested). The purpose of the trip was to undertake flying training over the next two days or so.

The aircraft I was to flying is a Piper L18c being the military designation for the Super Cub.  This would hopefully prepare me for eventually flying the aircraft of my dreams being a Stits Playboy which has very similar control layout.

The next day I was "treated" to over four hours of instruction including Practice Forced Landings, Stalls (four different types), steep turns up to 60 degrees of bank, and so on.  By the end of the day I'd developed some skill in each of these but my take-offs and landings would require more work !

At the end of the day this "boidie" retired to my hotel very tired but pleased that I'd achieved so much in one day.  Over my evening meal and during a rather sleepless night, I began to have doubts about the advisability of buying and flying the Stits Playboy.  By the morning my mind was made up and I told my instructor that I would not take further training and would not be buying the Stits Playboy. My decision was largely based on the likelihood of not being able to maintain adequate skills after training.

I came home and, having made the decision, slept remarkably well !

I have not failed. I've just found 10,000 ways that won't work
Thomas Edison

Keep well, and remember YOLO

Stephen

Sore Posterior

I saw the consultant this week and things continue to be most satisfactory. No detectable paraprotein and a Kappa reading that has again reduced. Having had a mean value of about 25, the reading had jumped up to 51.3 in December. It reduced to 47.9 in January and the latest reading, for February, is 46.5. You will see that the rate of reduction has reduced but, importantly, it has gone in the right direction.

You might have questioned the strange Post title. Well on Saturday Margaret and I went up to Bristol to attend a concert in the Colston Hall. The piece was the choral work Bach's St.Mathew's Passion. Whilst the music was wonderful, the seating certainly wasn't. By the end of the concert, we were both somewhat sore !

I've just been out for a walk along the Strawberry Line. Formerly a railway that interconnected several villages and carried, yes strawberries, it is now a scenic pathway of about 30 miles.

As can be seen in the photo, the route even includes a short tunnel. It will be interesting to watch how the views change with the seasons.

Right then, back to work redecorating and re-carpeting the kitchen, then the grass needs cutting -

man's work is never done.

Keep well, and remember YOLO

Stephen

Confidence Returns

Last month I reported an increase in my Kappa level to 51.3 that might have been an early indication of relapse. I attended my clinic appointment today and happily my Kappa has reduced to 47.9 thus I'm still OK. This of course comes as something of a relief. It is possible that the rise was due to the bad cold I had over the Christmas period. As I mentioned, there is still some debate about the interpretation of Free Light Chain Assay results.

On Sunday both our sons, our daughter in law, future daughter in law, our grandson, and a springer spaniel all arrived. Except for the spaniel the others have gone off to Val d'Isere for a week's skiing.  Brown in colour the dog has the apt name of Cocoa ! Apparently does not refer to her colour and should be "Coco" after Coco Chanel !

I have to confess that Cocoa has now calmed down somewhat since her puppy days and now represents an ideal reason for me to go for a walk. She also entertained us today by nearly catching our dinner - a pheasant that had foolishly wandered into our garden !

Another source of amusement today was a Shaun the Sheep:

These colourful creations had been displayed through Bristol and London before being auctioned for charity. It would seem that this one has found its way to this location just outside Bristol Childrens' Hospital.

Each month my blog takes a theme. This month it is perhaps appropriate for me to choose confidence and thus this quotation:

When you have confidence, you can have a lot of fun.

And when you have fun, you can do amazing things.

Joe Namath

Keep well, and remember YOLO

Stephen

Potential Change ?

Firstly, Happy New Year !

In the last blog post I mentioned our intention to spend Christmas in a luxury hotel in Bath and also that we both had colds.

This picture shows the superb view from our room out over the city and towards Bath Abbey. Our stay was somewhat spoilt by both of us having those filthy colds. Staying in a hotel at Christmas has been something of an experiment, and one which we don't plan to repeat. The best place for us, unwell or not, is at home over Christmas. Still, we needed to try it.

Margaret recovered from her cold fairly quickly but the same could not be said for me and on the 4th January I saw my GP who prescribed an antibiotic to clear up my cough. Only now, some 4 weeks after the wretched thing started, am I beginning to feel better.

This week I saw my consultant. All news was much the same as usual including the fact that my paraprotein remains undetectable. My kappa result, however, caused some discussion. There are two main types of myeloma - those which produce free lite chains (fragments) known as lambda and those known as kappa. I'm in the second category. Doctors are still learning to interpret free lite chains but they are recognised to be a more sensitive measure of cancer activity than paraprotein. For much of the time that I've been in remission, my kappa has hovered at a low reading in the mid twenties. The blood tested after my appointment in December shows the first real increase to a reading of 51.3. Most patients would truly love to have such a low reading but for me this might indicate change. It seems that it could be caused by the virus that resulted in my cold. Equally it could be the first indication of relapse.

Ever since I went into remission I have known that, at some stage, I would relapse. It is important that it does not come as a shock but simply the need to have further treatment. If the kappa reading returns to my normal or even seems to plateau then there will be no cause for concern. If, however, the reading shows a rising trend then I can expect my paraprotein to return thus signifying relapse. I would then need to plan my life accordingly.

Right now I'm aware that I have hardly exercised because of my virus and the cold weather. As soon as it warms a little, I'll be out walking again.

Walking is man's best medicine

Hippocrates

Keep well, and remember YOLO

Stephen