Summary Text

SUMMARY: First diagnosed with myeloma October 2011. Recruited onto clinical trial Myeloma X11 (Lenalidomide) at Bristol Oncology and Haematology Centre. First High Dose Therapy and Stem Cell Transplant (HDT&SCT) in July 2012. On maintenance until June 2017. June 2018 recruited onto Myeloma XII trial (Ixazomib). December 2018 Second HDT&SCT. On maintenance until February 2020. August 2020 Commenced treatment involving Daratumumab. April 2021 relapsed. June 2021 recruited onto Cartitude 4 clinical trial and infused with CAR-T cells in October 2021. My own immune system is now fighting the cancer . I am exceedingly fortunate.


Friday, 18 August 2023

August 2023

Just for once I have little to report except, of course, that I attended my monthly appointment and again my paraprotein was undetectable.

We're all experiencing something of a rather strange summer but nature seems to know what to do:-

Grapes almost ready !

As in previous years, our grapes have developed and will shortly be ready to harvest.  Again I will crush them (though not with my feet) and ferment them before adding spirit to make something like port wine.  Best practice requires that I make two bottles: one for this Christmas and one to keep.

I love everything that's old; old friends, old times, old manners, old books, old wine
Oliver Goldsmith

Keep well and KBO

Stephen


Tuesday, 18 July 2023

July 2023

Again I attended my consultant's appointment and my paraprotein remains undetectable and my light chains (another measure of any cancer activity) remain normal.  

So much is going on in my life and most of it positive.  

First the not entirely good news.  We were due to go on holiday and I discovered a lump in my neck under which I could feel my pulse.  I Googled the situation and became convinced that I might have an aneurism.  I decided to not tell HRH - why spoil her holiday - I would sort it later.  The day after our holiday I tried to get a GP's appointment but one could not be arranged within a reasonable timescale.  I therefore went to our local A&E.  From entering to leaving took a full eight hours during which I had been triaged, seen by a doctor, cannulated, CT scanned, and again seen by the doctor.  The diagnosis was that there was absolutely nothing of concern.

I also waited until after our holiday to get my eyes tested.  Two years ago the  optometrist had reported some cataract development.  Since then the affect has become more pronounced with a marked increase in glare.  This month's eye test resulted in a letter to my GP proposing a referral for cataract assessment and presumably surgery.  Today I was able to book a specialist appointment in September - excellent.

Now the fantastic news.  HRH and I had a holiday involving a cruise to the Norwegian fjords.  Just one of the highlight was my first view of a glacier.

Briksdal Glacier - Click to enlarge

The image above is of the Briksdal glacier which we reached from the village of Olden.  The whole holiday with the sights of Norway scenery and the experience of the cruise was truly awesome (a word I use sparingly)

The best and most beautiful things in the world cannot be seen or even touched - 
they must be felt with the heart
Helen Keller

Keep well and KBO

Stephen

Wednesday, 21 June 2023

June 2023

A surprisingly busy month.  

First I had yet another birthday - they seem to come round so very often.  For this one I wasn't described a old but instead as "Retro".  Whilst my wife's card to me identified me as being an Honorary Member of the Old Boys Moaning and Groaning Society; a membership that I cannot deny.

This month's consultant's clinic again provided the good news that my paraprotein remains undetectable.  Given such good news I am now returning to a former volunteer role - which requires that I fully re-train.

Growing old is mandatory, but growing up is optional
Anon


Keep safe, keep well 

Stephen

Monday, 29 May 2023

May 2023

As normal I visited the BHOC for my monthly clinic and again my paraprotein remans undetectable and my light chains are normal.  The consultant reviewed by immunoglobulin and is currently content to "wait and see".

The main change was that the trials nurse, DP, has moved on to a new role and I wish him well,  He has been replaced by HW who has already settled into the role.

Since my last post, my improved health and energy, together with improved weather, have enabled several projects.  One of our two garden huts had become clothed with ivy which required two days work to remove.  The other hut, which I had originally constructed, was given two coats of "paint".  The first hut we call "Jabba" and the second "Nissan" - I'll leave you to work out why.  During the Coronation I flew a Union Flag.  I've now installed a proper flag pole and will be able to mark each flag day - the next being the King's official birthday (Trooping the Colour).  I've also cleaned out the greenhouse and planted tomatoes and sown climbing bean seeds.  I can only hope that this year, the slugs don't get them.

It's weird, being the same age as old people
Anon

Keep safe, keep well 

Stephen