December 2022

First the good news!  Yet again at my monthly consultant's clinic I learnt that my myeloma has remained undetectable - my immune system is still fighting the myeloma as if it was an infection.  In many ways it is.

Not such good news:  Last year I reported that I had reacted to an infusion of immunoglobulin.  At the time it had been frightening and I was glad that the problem had been resolved by introducing pre-meds.  Starting last month, I had been again prescribed 6 infusions each to be taken one month apart.  

At the end of last month I attended for the first infusion only to be told that it had not been authorised. Immunoglobulin is apparently very expensive.  A week later I was back and the treatment had now been authorised.  Giving me confidence, I was first given pre-meds and having waited the required 30 minutes, the infusion commenced.  After about 40 minutes I started to react (despite the pre-meds).  This time I experienced chest pain which gradually spread down by torso and onto my upper legs.  Not unreasonably the nurses had to assume that I was having a heart attack.  I was thus subject to an ECG and the doctor was called.  Until he was sure I was not having a heart attack, I was denied further medications.  By now things seemed pretty bleak and included yet more rigor and being sick but the medications slowly brought things under control.  By now my temperature had spiked and I had to wait the required 4 hours before I could receive paracetamol.  All in all a very scary episode.

At this month's consultant's appointment I was encouraged to take up immunoglobulin again with the same brand which I had tolerated after last year's problem. Reluctantly I have agreed but making it clear that I will only try if the correct brand is available.  I confess that I am far from happy but my poor immune system really does need it.

This was the brand of immunoglobulin that I tolerated last year - let's hope.

Always do what you are afraid to do
Ralph Waldo Emerson

Keep safe, keep well and very best wishes for Christmas and 2023.

Stephen

November 2022

I again attended my routine consultant's appointment this week.  Last week I had yet another bone marrow biopsy and I was so very pleased to learn that no myeloma cells were detected.  My last blood test returned the same result.  Truly extraordinary; that after a year I remain is such condition.  I was shown various blood results.  In particular, my platelet count, which had once given such concern, was now very satisfactory.  

My recent cold, despite needing two courses of antibiotic, has still not really cleared up.  Looking deeper at some of my results, the consultant concluded that my immune system, needed to fight such infections, was still compromised.  He has therefore decided to put me on a further course of immunoglobulin.  I've had this before and it comprises six intravenous sessions, once per month.  Each session takes about three hours as reactions are common.  The fact that I am to have this again just shows how much care I receive from the BHOC.

You may recall my intention to harvest our grapes and make something approximating to Port wine.  This I have now done as shown here.  This is my third "colheita" being a Portuguese term for wine of a single year.  

All we have to do now is wait for it to mature.  Meanwhile we have similar wines from two previous years.

No act of kindness, no matter how small, is ever wasted

Aesop

Keep safe, keep well  😀

Stephen

October 2022

My apologies for not keeping my blog up to date.  I should have had a routine face-to-face consultant's appointment but at the time I was suffering a truly bad cold.  In the end it was made over the telephone.  The cold resulted in a course of antibiotics to deal with infected lungs and sinuses. The latter had affected my hearing, making part of my face tender and even influenced my balance.  My GP recognised that the first course of medication was insufficient and so prescribed another.  I now seem to be finally on the mend after three weeks.

This month is significant for two reasons:

- I was first diagnosed in October 2011 so this is the eleventh anniversary
- I received my CAR-T cells exactly one year ago

I have so very much to be thankful for.

I never met a bitter person who was thankful.
or a thankful person who was bitter.
Nick Vujicic

Keep safe, keep well  😀

Stephen

AUGUST 2022

Yet again, at this month's consultant appointment, my myeloma (as monitored by my paraprotein level) remains undetectable.  My other blood counts were also considered acceptable.  Notably my neutrophil has stabilised indicating that the frequency that I self administer GCSF is appropriate.

This is the GCSF that I self administer once each week.  It comes in the form of pre-filled syringes and must be stored in the fridge.  Its purpose is to stimulate the production of white cells, one type being neutrophils.

The reference to Filgastim seems to be straight out of Harry Potter!

Last month I showed the progress of our grapes.  The recent hot weather has had a marked effect:

Tasting the grapes, although now well-coloured, they are still quite bitter.  

Maybe another two weeks and I'll be able to harvest and commence making Port wine.

My quotation(s) this month are therefore:

"Wine is a drink for boys - Port for men"
Winston Churchill

"The first duty of Port is to be red"
Ernest Cockburn

"Any time not drinking Port is a waste of time"
Percy Croft

Keep safe, keep well  😀

Stephen

JULY 2022

At this month's consultant's appointment, yet again I was given the good news that my myeloma remains undetectable. In addition my neutrophils have improved and I can increase the time between injections.  Also apparent is that my platelets are now showing a slow but recognisable improvement.

This last month has been a busy one.  I've had our boiler serviced having found an excellent local engineer.  Still on the subject of "local", we ordered a new carpet for our dining room.  So what? you might say.  Well, this now meant that I would have to get the re-decoration done! I did find the necessary energy and the result seems fine.

As we are all aware, summer has now arrived with both good and not-so-good results.  

For us, this year's grapes are especially abundant.  They are always small and full of pips but they do make an excellent approximation to port wine!

Given this month's avtivity and exertion, this seems appropriate:

Life begins at the end of your comfort zone
Neale Donald Walsch

Keep safe, keep well

Stephen

JUNE 2022

At my monthly consultant's appointment I was again told that everything is fundamentally OK.  At last month's blood test paraprotein remained undetectable.  The CAR-T cells continue their fight against any myeloma.  Both my Haemaglobin and platelet counts had improved.  My neutrophil level was still lower than preferable and I was instructed to self administer GCSF more often.

A few days ago, my clinical trial nurse phoned me to check that I have had or would shortly have a "Reinforcing (Booster) Covid vaccination.  I had previously received a letter from the NHS and the timing was perfect being a minimum of 3 months since my last vaccination.  I was able to book an appointment locally this week.  I have so far had my original two doses.  I then had to have a course of 3 doses after receiving CAR-T cell infusion.  This. then. will be my sixth vaccination!

Yet again we have the very good fortune to be looking after a certain black spaniel whilst our son and his girlfriend take a well-earned short holiday.

Those who wish to sing, always find a song

Swedish Proverb

Keep safe, keep well

Stephen

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