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.


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


Thursday, 9 July 2015

Good Reason to Celebrate

On the 18th July 2012, I was discharged from the haematology ward at Bristol's BHOC. I had just received High Dose Therapy and Stem Cell Transplant. Now three years on I have just attended my monthly consultant's clinic where my blood tests remain most positive and I was prescribed cycle 36 maintenance therapy. I have every reason the celebrate!

In the last three years my health and quality of life has gradually improved to the point that I feel better than I did before I was even diagnosed. Yes I have some back ache, yes I can get a little tired. Neither condition stops me leading a full and rewarding life.

Of course it's also summer! Blue skies and warmer weather make us all feel more cheerful, and it's the season for air displays! With three good friends I journeyed up to the RAF Cosford air day. The weather wasn't perfect but we were treated to a wide range of flying including visits by the Red Arrow (who put on a magnificent show despite the limited cloud base), and from Avro Vulcan HX558 piloted by Bill Ramsey and Martin Withers. It was Martin Withers who piloted XM607 all the way to the Falkland Islands. HX558 is the only flying example of this cold war bomber and sadly will be retired at the end of this season never to fly again.


The following weekend saw many of the same aircraft display at Weston-super-Mare. I have certainly "overdosed" on the Vulcan!

Happiness resides not in possessions and not in gold;
the feeling of happiness dwells in the soul
(Democritus)

Keep well and YOLO

Stephen

Saturday, 13 June 2015

Phew !

Margaret has had her procedure and seems to be coping well. It's early days but we're both very encouraged by the care she received at the BHI. She has her stitches out next week and has a review appointment in six weeks time. By then I believe we will know if this has been successful.

Two weeks ago I had my neck ultrasound scanned. I had reported a neck ache to my haematology consultant. Secretly I feared that the medication I'm on might have caused another cancer - lymphoma. My consultant probably had the same concern. It was with considerable relief to be given the all clear. My monthly consultant's appointment again contained excellent news that my paraprotein remains undetectable and my Lites are most encouraging. It had been a complicated day: Margaret's day surgery appointment, my consultant's clinic and my two monthly treatment appointment. Complicated but satisfying ! The day also exemplified the high quality of care that both Margaret and I receive from our NHS.

Looking for a suitable thought about "fear" I came across this:

Always do what you are afraid to do
(Ralph Waldo Emerson)

There seems to be a strange truth in that, which I can't quite explain.

Keep well and YOLO

Stephen

Thursday, 14 May 2015

In Sickness and in Health

This week I have again seen my consultant and, again, my results remain stable and not giving any cause for concern.

So why the title? Well Margaret and I travelled to Cyprus again and had the satisfaction of meeting with several of our friends. That was wonderful but Margaret's health was giving us some considerable cause for concern. Reluctantly we decided to cut our trip short and returned to the UK after only one week. The airline and airports provided Special Assistance which we very much appreciated.

Now perhaps, you will see the reason for this month's title. For so long Margaret has supported me whilst I went through treatment for myeloma. She has attended some of my appointments with me, acted as taxi driver, visited me in hospital and, yes, probably worried about me. Right now the roles are reversed. It is me that is healthy, and it is Margaret who now needs my support. Strange how nature(?) makes such things possible. Hopefully the treatment she is about to receive will have a marked effect on her well being.

Health is not valued until sickness comes
(Thomas Fuller)

Keep well and YOLO

Stephen