Summary Text

SUMMARY: First diagnosed with myeloma October 2011. Recruited onto clinical trial Myeloma X11 (Lenalidomide) at Bristol Oncology and Haematology Centre. First High Dose Therapy and Stem Cell Transplant (HDT&SCT) in July 2012. On maintenance until June 2017. June 2018 recruited onto Myeloma XII trial (Ixazomib). December 2018 Second HDT&SCT. On maintenance until February 2020. August 2020 Commenced treatment involving Daratumumab. April 2021 relapsed. June 2021 recruited onto Cartitude 4 clinical trial and infused with CAR-T cells in October 2021. My own immune system is now fighting the cancer . I am exceedingly fortunate.


Friday, 25 November 2016

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

Wednesday, 26 October 2016

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

Thursday, 29 September 2016

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

Wednesday, 31 August 2016

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