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.


Thursday, 29 October 2015

A Ruby Month

Every month, I struggle to choose a title that best fits the content of the blog. This month is certainly no different.

Firstly, this week I again visited my consultant to be told that everything remains in order and that I could be prescribed for maintenance cycle 40. By strange coincidence this month sees our 40th (Ruby) wedding anniversary. It's no secret that Margaret couldn't be bothered to train another one.

We had the great pleasure to travel one evening up to Bristol's Colston Hall to hear Verdi's Requiem. We both enjoy classical music and there can be few compositions which exert so much power and emotion as this. Fantastic choir and orchestra.

Two days later, in my capacity as a JP, I attended the ceremony in Bristol Cathedral which marks the start of the Legal Year. Such events serve to remind us of our role in the justice system.

During the month, the last flying Avro Vulcan XH558 undertook to make two final national tours. The first, the northern tour, took it as far north as Edinburgh. It also showed just how much interest there is in this iconic aircraft. The project's internet server crashed and so did the associated Apps systems. It made it very difficult for potential spectators to check the schedule. Knowing that a southern tour was to follow, I needed to find a solution. As a confirmed critic of (anti-)social media, I registered for Twitter. This worked and as the time for the southern tour approached I was able to study the route and timings and decided to watch at the Severn Bridges. In the event XH558 changed her route and arrived much later than planned - but I did see her that last precious time.

Yesterday (28th October 2015) XH558 flew for the very last time. Because of the very real risk that spectators would prevent her home base of Robin Hood Doncaster Sheffield airport (who dreamt up that name?) from operating, the event was kept secret until the last possible moment. It was televised by live YouTube feed and it was clearly a very emotional time for all concerned. After taking off XH558 made one low approach before landing back for the last time. She was greeted by the airport fire service who provided a water arch. Let's hope the national media catch up with such a significant event.

The commentator for the last flight of XH558 quoted the children's book author and illustrator Dr Seuss:

Don't cry because it's over
Smile because it happened.

Keep well and YOLO
Stephen

Wednesday, 30 September 2015

Life's Good

Firstly my consultant's appointment went well yet again. No detectable paraprotein and my Free Light Chain Assay (Lites) were fine. The doctors, my trials nurse, and I agree that it is remarkable that I am now starting maintenance cycle 39.

The month in general has been most enjoyable. Margaret's health has continued to improve and she has been busy with a variety of activities associated with her librarianship (is there such a word?) and her role as a school governor. For my part I've sat in court on four days this month. I continue to learn of course but I'm gradually developing more confidence. There have been (rare) occasions when I've been able to brief my bench colleagues on some finer point of process. I am expected to sit on 13 full days per year (April to March). By volunteering, I've already sat on 22 days !  As will be apparent, I get huge fulfilment from the role.

The other morning I set my alarm to wake me at 3am to watch the 'super moon'. This was apparently a rare event when the moon's orbit brings it to it closest to the earth and coincided with a lunar eclipse.


I must confess that although the moon did indeed darken and become coloured, the size was hardly super ! Still, maybe it will be better when it happens again in 33 years.

This month's saying is absolutely nothing to do with the moon. Instead it simply amused me:

It's like deja-vu, all over again
(Yogi Berra)

Keep well and YOLO

Stephen

Wednesday, 9 September 2015

Toys !

Firstly, during last week I visited my consultant and again was told that everything is fine: no detectable paraprotein and Lites almost normal. This was especially pleasing to hear because, for some odd reason, I'd got it into my head that I should expect bad news.

Margaret very kindly let me go out to play for the whole weekend. On the Saturday I drove over to attend the Light Aircraft Association Rally at Sywell Aerodrome in Northamptonshire. The LAA is responsible for the administration of home built aircarft. It performs a similar role for those aircraft that no longer have manufacture support. I was therefore able to walk amongst a huge variety of aircraft.



This picture is of a Jodel D9 single seat, open cockpit aircraft. It is home-built and powered by a converted Volkswagen engine. In many ways it is typical of the type of aircraft I was able to see. The picture also gives some idea of the scene and the fact that a cold wind was blowing from the north the whole time I was there !

I stayed overnight in a hotel before joining friends at the Shuttleworth Collection in Bedfordshire. I was treated to an excellent picnic lunch (thank you again Sally), to an excellent airshow, and to surprisingly warm weather. The sunshine will certainly have topped up everybody's vitamin D.




The picture shows just two of the wonderful old aircraft that have been restored to flying condition by the Shuttleworth Collection which contains both aircraft and vehicles. It was wonderful meet up with friends and to be allowed "out" by Margaret.

One final news item: The gentleman who bought the aircraft salvage after my incident last year, has been in touch to ask if I might want to buy it back once it is restored later this year. We will just have to see !

This month's saying is thus especially apt:

As men get older, the toys get more expensive
(Marvin Davis)

Keep well and YOLO

Stephen

Monday, 10 August 2015

Another Good Month

The title pretty much sums things up. Continuing my desire to return to flying I traveled over to the Peterborough area to inspect a possible aircraft.


This is called a Clutton FRED (Flying Runabout Experimental Design) which was developed by Eric Clutton in the early 1960s. It is single seat, open cockpit and generally referred to as a parasol wing. (Best described as a biplane without the lower wing!) Yet again my legs (which think I am still 6 feet tall) made this aircraft impractical for me - so the search goes on.

I attended consultant's clinic last week and, again, my test results were positive with no detectable paraprotein. Noting that I need to renew travel insurance, the consultant has included in his routine letter that my Disease Status is "complete biochemical response by paraprotein".

Also last week, our elder son brought our grandson over for the day. On his arrival, Finley was keen to help his "Papa" replace a handle on the fridge/freezer:


Later we all (Finley, Margaret, Nick and I) took a bracing stroll along the sea wall at Sandbay. Now I wonder why I had a stiff neck the next day!


I suspect such seemingly insignificant events become the memories of the future.

The best thing about memories is making them
(Anon)

Keep well and YOLO

Stephen