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  This had been my third PICC line and again it was amazing to have it withdrawn so easily and without any pain whatsoever.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

Christmas Present

Brought out of storage screaming and kicking (me?) our artificial tree is now around 26 years old.  As such it must surely be carbon-free by now.  

It is festooned with many memories especially of our holiday travels over the years.  It even has our late dog’s squeaky ball.

Over the last few weeks I have been making regular visits to the BHOC.  For some time, Margaret drove me to Bristol but most recently I have thankfully been able to drive myself and relieve her of that burden.  The visits have typically been to have platelet infusions and to have the dressing on my PICC line changed.  

One visit included a Bone Marrow Biopsy.  I have genuinely forgotten how many of these procedures I've had but I think it must be at least twelve!  Yesterday I received a phone call from one of the BHOC doctors who gave me the news that the BMB had resulted in no abnormal plasma cells being detected.  Given that I know that my paraprotein count is reducing to very low levels, the latest news is very encouraging.

In respect of Covid, I cannot be given any vaccine until late January.  I am thus shielding and accordingly so is Margaret.  I've been contacted by the NHS and, should I become infected will be given the new anti-viral treatment nMAb.

The latest news about my BMB has been an extraordinary gift. I wish everyone a very Happy Christmas and a Peaceful and Healthy New Year.

Keep safe, keep well

Stephen

After Effects

Every year we are treated to a display of winter-flowering jasmin

The after effects of my treatment continue to require effort both from myself but especially from Margaret who drives me to and from Bristol.

Looking at my diary, last Tuesday I attended clinic needing blood tests and line care (weekly change of my PICC line dressing).  The blood tests identified low platelet count so the appointment was followed by a trip up to get a transfusion.  The following day I was back for a transfusion of two units of blood.  This meant that Margaret left me in Bristol and went home.  Once the timing was known she then returned to collect me.

This week has been similar; blood tests/line care followed by clinic, then yet more platelets.  Yesterday I was treated to an fusion of imunoglobulin.  This is a complicated subject which I can only partially explain.  In simple terms, this treatment tops up my immune system!  Because the treatment can have side effects, the infusion rate is initially slow.  My blood pressure, temperature, respiration and oxygenation were regularly checked.  Little by little the rate of infusion was increased until the expected time of conclusion could be predicted.  This allowed me to phone Margaret and have her collect me - yet again.

All this effort might seem almost too much but firstly it demonstrates the efforts that my consultant and the BHOC are going to care for me.  Secondly I perceive it as investment.  A few months of treatment will hopefully give me a period of remission. My consultant showed me my paraprotein graph which displayed a near-vertical line downwards.

View health as an investment, not an expense
John Quelch

Keep safe, keep well

Stephen