November 2024

I trust you will forgive the lack of post for September or October but, apart from a routine visits to the BHOC for blood testing, there was nothing to report.

On the 8th October 2021, three years ago, I was admitted to the ward in the BHOC in preparation to be infused with my CAR-T cells.  Prior to that date I had been given the wonderful news that I was to be recruited onto a clinical trial called Cartitude 4.  The trial sought 400 recruits worldwide.  Half would receive standard treatment whilst the others would receive the CAR-T cells.  All 400 were required to undergo a huge number of screening tests to ensure their eligibility.   Only later did I receive the incredible news that I would be in the second group and thus receive the CAR-T cells.

Having arrived on the ward I was to receive two chemotherapy drugs being cyclophosphamide and fludarabine as "conditioning" and seemingly to reduce the number of myeloma cancer cells.  They would be given over three days after which I then had unexplained temperature spikes.  This meant that the infusion of CAR-T cells was be postponed.  Two days later, and with authority from Janssens in Boston USA, I received the infusion of CAR-T cells on 15th October.  This was undertaken with multiple hospital staff witnessing and, importantly to the strains of "Give me Sunshine" by Morecambe and Wise.

The cells arrived deep frozen in liquid nitrogen in a container which I described as "looking like an undernourished adolescent Dalek".

The cells being so valuable had been packed with their own aluminium cassette.  The bag containing them then had to be warmed up before infusion could take place.

To minimise any damage, the cells were infused by gravity through a canular. 

During the early hours of 25th October, my temperature rose to 38.7 and causing much concern.  Given that I was now neutropenic there was a possibility that I had an infection and samples were rushed to the laboratory.  The staff were very concerned and I was now shaking uncontrollably.  Later that day, despite being given paracetamol, my temperature had risen above 39 degrees.  

The warning "Be careful what you wish for" became significant since when the new cells get to work, the body may release an excess of cytokines producing the very symptoms I was now experiencing.  I had almost hoped for Cytokine Release Syndrome (CRS) which would show that the CAR-T cells were active but the looks of the nurses and doctors clearly indicated their deep concern.   Only once infection was ruled out could I be given the drug Tocilizumab which fortunately brought things under control very quickly.

Remarkably I was allowed home on 29th October.  It had been a very memorable stay in the ward and I remain. even to this day, in debt for the highly professional treatment and care I received.

So why is this month is so very special?  I have just seen my consultant and my myeloma remains undetectable, now three years later. No paraprotein had been found and my light chains were normal. Sadly the treatment I have received has not been made available in the UK. 

I am the living proof of its effectiveness.

When you rise in the morning, give thanks for the light, for your life, for your strength.

Give thanks for your food and for the joy of living. 

If you see no reason to give thanks, the fault lies in yourself.

Tecumseh

Keep well

Stephen

August 2024

Since my last post I have again returned to the BHOC for routine observations and blood tests.  Although my paraprotein results could not be identified, my free light chains results suggested that the CAR-T cells were still hard at work.

The other major event during the month has been a trip to see the British Normandy Memorial at Ver-sur-Mer.  The silhouettes would only be there until the end of the month.  Readers could do no better than to visit the website at  https://www.britishnormandymemorial.org/ .

Click to enlarge

This image shows the Memorial which is in the form of avenues of columns each recording the names of 22,442 British service personnel who died during D-Day and the Battle of Normandy.  In the foreground are just some of the 1,475 silhouettes which represent those who died on D-Day itself.

Click to enlarge

I had the very great privilege to be able to walk amongst the silhouettes and to take this picture looking up to the memorial.

Having visited the Memorial we also took the opportunity to visit the Commonwealth War Graves Cemetery at Bayeux.  This cemetery, the largest CWGC cemetery in France, contains 4,649 graves of servicemen who fell during Operation Overlord. There is also a Memorial to the Missing which commemorates the over 1,800 servicemen who have no known grave.

Margaret and I only planned to be in France for the one day and so travelled over on the night sailing of the Portsmouth-Caen ferry returning on the evening sailing.  Sadly the handling of vehicles at both ports was utterly hopeless with very extended queues.

Everyone can be great, because everyone can serve

Martin Luther King

Keep well

Stephen

July 2024

It's been an eventful month!

Margaret and I went on another cruise.  This time for two weeks visiting the Baltic countries of Sweden, Finland and Denmark. 

Copenhagen's Little Mermaid

Showing just one image from our cruise; The Little Mermaid which is situated in Copenhagen in Denmark.

She is allegedly the most-photographed statue in the world (and I've added to the count!)

On return to the UK both of us felt rather unwell.  I had to provide routine blood samples the day after we got home so I mentioned my condition to the nurse.  She promptly had a doctor check my lungs but they were OK. Never-the-less she had me provide a sputum sample.  A few days later one of the consultants phoned me and during the conversation it became clear that I had an infection which would respond to antibiotic.  After some problems, my GP kindly prescribed the necessary medication which is now doing its job.  

Still feeling unwell I had obtained a COVID test kit.  Be warned, the government has ended the ability for immune compromised people, like me, to order kits on line.  Finding my existing kit had time expired, I had to go to a local pharmacy in order to get one provided.

The result of us both taking our COVID tests was plain to see - both positive.

At least we now knew why we felt so unwell.

I find myself rather critical that in order to test, I must first risk infecting others in order to get a test kit. Crazy.

As things stand, whilst Margaret is still somewhat under the weather, I have almost recovered and will shortly be able to return to normal activities.

I enjoy convalescence.  It is the part that makes illness worthwhile.

George Bernard Shaw

Keep well, keep safe

Stephen

June 2024

Nothing medical to report this month really. I attended my routine (non consultant's appointment) where I was asked to complete some surveys.  These are undertaken from time to time and seek to record my health conditions and quality of life.  With regard to the latter, The system also reported that I was at Day 980 as measured from Day 1 when the CAR-T cells were infused. - WOW.

Of note was a trip Margaret and I had on the Waverley.  This is the last and only sea-going paddle steamer.  We joined the ship at Clevedon Pier and first sailed up the estuary to abeam the Avonmouth Docks.  We then sailed down to round both Steap Holme and Flat Holme.  Both islands are steeped (pun) in history.  I was fortunate enough to capture this image of the setting sun.

Sunset at Steap Holme

I was less than fortunate though in that to get the picture I had spent some time on deck in the chill wind.  Early next morning what had been a mild cold had turned into sinusitis and earache.  Even at my age, there is much to learn.

Life comes with pain

Rod Wave

Keep well
Stephen