January 2024

OK so not the best start to the year; late posting January's missive.  

January in fact didn't start too well anyway.  I went down with flu at the start of the month.  It lasted only days but then followed with a bad cough.  Even now I still have its remains.  Now I have deafness.  That shouldn't be a problem now that pharmacies can prescribe.  Except that to do so they must be first qualified on the otoscope (look it up) and most seemingly are not yet.  If they did find excessive wax then the NHS no longer offers syringing by GPs.  Seems rather like the failed NHS dental system.  Anyway, never mind, I've got a GP appointment booked before the end of February.

I had my second eye check-up and have now booked an optician's appointment later this month.

Oh, and I've attended two routine consultant's appointments and no I apparently don't need immunoglobulin (there is a national shortage) unless I develop repeated infections (like flu, cough, deafness?)

Just because nobody complains, doesn't mean all parachutes are perfect

Benny Hill

Keep well, keep safe, and "KBO"

Stephen

December 2023

Firstly, you may have noticed an absence of a post for November.  This was simply because I only needed to attend the BHOC to provide blood samples. The only notable event during that month was my attendance in the Remembrance Parade in Bristol on the 12th.  Perhaps inevitably the rain came down each time I removed my bowler hat!

Recent blood tests over two consecutive months had indicated a very low (2) but meaningful rise in my paraprotein level.  They would seem to have suggested a potential relapse.  This was perhaps confirmed when I was informed that I was to see the haematology lead.  In the event the news was very different.  My November blood test indicated an inability, again, to detect paraprotein.  We could only guess that the previous indications had reinvigorated the CAR-T cells which had done their job and fought the cancer cells.  Only time will tell but I take the news as a significant Christmas present. 

The consultant did check my immunoglobulin level and decided that I should be put back on to IvIg treatment just like I needed during the last two years. No doubt I will shortly be allocated a treatment appointment

One extra bit of news - I've now had my second cataract surgery.  Early indications are that everything went very well.  Remarkably I could even see through the new lens as HRH drove me home after the operation.

No news is good news

Ludovic Halevy

I wish everyone a very Happy Christmas

Stephen

October 2023

As the summary above indicates, I was infused with my CAR-T cells in October 2021 and thus two years ago:

During that time, my myeloma became undetectable, I have not needed any any anti-cancer treatment, and my quality of life has improved immeasurably.  I have seen many more dawns and sunsets than I had the right to expect.  Together with Margaret, I've had a holiday in Cyprus and another where we finally cruised to Norway.  I have even returned to my duties as a Volunteer Listener with Samaritans.  I have every reason to celebrate this anniversary.

Just 10 days ago I had my first cataract surgery where my natural eye lens, which had become cloudy with age, was replaced with a plastic one.  The operation went very smoothly and within 4 days my sight was almost back to normal.  I had feared about driving, especially at night, but I found that the reduced glare had actually improved the experience.  Yet again I feel so very fortunate.

Returning to the subject of myeloma, this week I had my routine clinic appointment at the BHOC.  The last time I saw a consultant was actually in July.  In August and September it was decided that I only needed to see my clinical trials nurse.  This week, the consultant gave me the news that my last two blood tests had both shown a paraprotein count of 2.  I was told not to be too concerned yet as both readings were very small and, importantly, the same.  Significantly my free light chain results currently remain normal.  It was always to be expected that the CAR-T cells would eventually deteriorate and it remains to be seen what these two readings really mean.  Of note, I was also told that all my general blood results were very good.  Having two years without any chemo has clearly made them better.

To summarise - I will just have to wait and see and in the meantime ENJOY.

When you arise in the morning,

think what a precious privilege it is to be alive

to breath, to enjoy, to love

Marcus Aurelius

Keep well, keep safe

Stephen

September 2023

As usual, this week I attended the BHOC for routine blood tests etc. with nothing to report.

Last week I attended an eye clinic following from a recommendation by a certain high street opticians that I be referred for consideration for cataract surgery.  For some time I have become increasingly aware of glare especially when driving.  

The recommendation indicated that I was "borderline" for need for surgery.  The eye specialist I saw last week said that my need for surgery was "absolute" and that I had (until then) an undiagnosed condition called Fuch's Dystrophy (missed despite repeated visits to that high street opticians).  The condition is a deterioration of the cornea which may delay recovery from the cataract surgery and eventually result in need for corneal transplant  Oh well ! Now I just have to wait for a date for surgery.

One last story to tell. Last month I showed an excellent crop of grapes developing on our vine.  I have always used the principle that when grapes start to drop, they are ready to harvest.

Well, this month that time had arrived and we enjoyed a very healthy crop.  These were duly crushed and fermented.  Unlike previous years, though, the juice has proved to be very acidic.  Despite referring to my Boy's Own book of Oenology (look it up), this year I must accept defeat.  2023 clearly is not a vintage year!

A smile is happiness you'll find right under your nose
Phyllis Diller

This month definitely "KBO"

Stephen