MAY 2022

Yet again another month with excellent news.  My consultant explained that my last test for paraprotein was negative so the CAR-T cells continue their role.  My platelet count remains low but this is not causing any problems. My neutrophil level is too low requiring that I return to self-administered (injected) GCSF.

Since my last appointment, Margaret and I have had a week's holiday in Cyprus where the temperature was in the mid 20s - perfect.  We pampered ourselves staying in a luxury hotel.  Having spent so long in the peace and quite of isolation and even when attending hospital, at least 2 metres from anyone, the experience of being on an aircraft was quite unnerving.  The cabin was noisy and my fellow passengers were just 18 inches away.

Despite a "7 day" holiday only actually being 5 days due to travel, we still had a wonderful time.

Here I'm enjoying a shandy (honest) at our favourite restaurant at Avdimou Beach.

Sheer bliss.

The most beautiful thing in the world is, of course,
the world itself
Wallace Stevens

Keep safe, keep well

Stephen

April 2022

 Again, quite a bit to report and again nothing bad.  Taking events in order, I've now had my third Covid re-vaccination.  Apart from a somewhat sore arm, I had no side effects.  The short time between jabs had only been possible as I was given Moderna.  

I then had my 5th, and most recently my 6th immunoglobulin infusions.  As before this is a lengthy process involving pre-medications and then the infusion lasting about 3 hours and requiring very cautious monitoring by the nurses.

At the end of March I had yet another Bone Marrow Biopsy.  This time, in addition to the doctor, there was a nurse present.  We were so busy chatting that I genuinely did not experience any pain - remarkable but then I can talk for Britain.  I later received the result of the BMB and a blood test, both of which confirmed that my immune system continues to fight the myeloma which remains undetectable.

Finally I had my influenza and pneumonia jabs.  Remarkably I had no side effects.

This year spring seems to be lasting over quite an extended period.  The daffodils were wonderful but have now gone over.  The magnolia was especially attractive and long lasting.  The trees are only now coming into leaf.

Finally, the bluebells are abundant this year. They gladden our hearts.

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.

Chief Tecumseh

Keep safe, keep well

Stephen

March 2022

Again I find myself able to report several pieces of good news.  Firstly in mid-February I was able to receive my second re-vaccination against Covid.  Rather as anticipated it proved difficult to persuade the administrator that this was to be an intentional re-vaccination.  A doctor was called and she was able to give the necessary authorisation.  Once the jab had become registered on my GP records I then requested and received my Covid Pass.  International travel is now possible!

Later in February I had my fourth Immunoglobulin infusion.  Again I was given pre-medications and thus avoided any reactions - phew!

This week I had a meeting with my consultant who gave me the exceptionally good news that my paraprotein count (measure of myeloma activity) was zero when checked on 1st February.  This news came after I had already been told that my latest bone marrow biopsy had also found no evidence of the cancer.

During the weekend I had taken a walk around our village which is exceptionally hilly.  Much to my surprise I walked much further than normal and without any breathlessness.  I would seem to be slowly getting my fitness back.

Not withstanding the appalling  international situation, this month I rather felt that a cheerful quotation would be in order:

Inside every old person is a young person
wondering what happened.
Terry Pratchett

Keep safe, keep well

Stephen

January 2022

Happy New Year!

Quite a lot has happened since my last post.  My consultant decided that I need not keep my PICC line any longer.  The benefit for me would be less visits to Bristol to have the dressing changed and less risk of infection.  This had been my third PICC line and again it was amazing to have it withdrawn so easily and without any pain whatsoever.

You may recall that in November I had my first infusion of immunoglobulin.  That infusion was to be the first of six given every four weeks.  The second, in December, was rather more noteworthy as I reacted to the medication.  The first indication was a strange pulsing sensation in my legs.  Soon I started to feel very cold and commenced uncontrollable shaking (rigor).  The nurses were fantastic and reacted very quickly stopping the infusion, reassuring me, checking my vital signs, and giving me a cocktail of medications.  Soon everything was calm again.  Once the doctor had checked me over, the infusion was re-commenced with continued monitoring of my condition. 

This week I returned to the BHOC for this month's immunoglobulin infusion.  I confess to being somewhat wary after my experience in December.  I needn't have worried.  The cocktail of medications I had been given in December were now given as a pre-med.  All I can say is that they did their job; no reaction.

With the agreement of my consultant, I could now seek re-vaccination against Covid.  It is presumed that my CAR-T cell treatment would have negated my previous two vaccinations and I had been precluded by the trial from getting a booster.  My consultant sent a letter template to my GP which had originated from the Antony Nolan Trust and re-published by Myeloma UK.  It sought to explain the situation and that I would need three re-vaccinations.  When I spoke to my GP he did not mention the letter but referred me to our local "vaccination hub".  They provided an appointment the same week.  On arrival I encountered a very long queue inside a rather small waiting area - hardly satisfactory but at least everyone was masked.

Eventually I was ushered into a treatment bay.  

The administrator was concerned about how to record re-vaccination but the vaccinator understood the subject and I received the first of three doses of Moderna vaccine. Unusually the patient information leaflet suggests that I should have the second dose after only 28 days - we shall see!

Finally, I am just starting to feel sufficiently energetic to start taking exercise again.  I must now find a way of controlling the inevitable back pain.  I have previously been advised to take paracetamol alongside Oramorph.  I am now on Zomorph and will now see the affect of paracetamol.

The bad news is time flies

The good news is you're the pilot

Michael Altshuler

Let us hope for peace in 2022.  Keep safe, keep well

Stephen