After 11 years and 925 posts, it feels like it’s time to stop blogging. Long past the time to stop, if I’m being completely honest. So I am going to stop. This is the last post. Probably.
I suppose there’s always a chance that I may start up again (never say never) but it feels unlikely at the moment for a variety of reasons.
Thank you to everyone who has followed my progress through two psychology degrees, a mantle cell lymphoma diagnosis and treatment, not to mention all the sundry other things that have caught my attention over the years.
Three photographs from a Spondon Carnival of the late 1940s. The first two images show the procession emerging from Cambridge Street onto Willowcroft Road. The third picture is the Celanese float, advertising the benefits of cellulose acetate in textile manufacturing. The sign on the lorry reads: Celanese fabrics made at Spondon are Comfortable, Artistic, Reliable, Novel, Inviting, Versatile, Alluring, Lovely. Marketing was simpler seventy years ago.
The Spondon Historical Society’s archive has more images demonstrating the importance of British Celanese to the event. In 1948 the gowns for the Carnival Queen and her Attendants were loaned to the organisers by the company.
While picking up a new pair of glasses this morning, I spotted this ghost sign in Long Eaton. It’s located on the Claye Street side of the building that was, until fairly recently, the Miss Elany antiques shop.
It’s difficult to make out much detail on the sign except that the business was located 50 yards away. Although the sign is defunct it seems that R H Moss & Co (founded 1889) still exists, based a few miles away in Sawley.
One of the other astonishing¹ photographs found in my father’s collection yesterday is this view of Spondon Methodist Church. It’s scanned from a small print as the negative seems to be missing. I think it dates from the late 1940s or early 1950s based on the other photographs it was stored with – but obviously taken before the A52 bypass was built in the mid 1950s.
I’m unable to date this photograph of my father’s exactly, but my guess is that it will be from the late 1940s or early 1950s. I can’t imagine a hunt ever managing to make its way through the middle of Spondon now.
It’s been five years since I was diagnosed with mantle cell lymphoma (MCL). I’ve always wanted to know what to expect from treatment. In 2014 the general consensus among haematologists was that the disease was treatable, if incurable. Depending on which research you read, the median survival time from diagnosis was somewhere between 3 and 7 years. Of course, median survival times tell you little about your own prospects. You always hope that you will be on the side of the survival curve that’s beyond the median.
The good news for MCL patients is that the median survival time is continuing to rise as new treatments are developed. I’ve recently read two interesting pieces of research. The first is a retrospective study of patients treated between 2000 and 2014¹. The survival graphs that are directly relevant to me are reproduced below.
For patients younger than 65 years old who had a stem cell transplant following chemotherapy, these charts show that the median overall survival time was around 13 years from first treatment, with the first 7 years likely to be disease-free. Subsequent treatments become much less effective however – hence the rather gloomy sounding subtitle to the study.
The second study concerns an innovative trial for MCL using CAR T therapy. This type of treatment was covered by the recent War in the blood documentary. CAR T therapy involves genetically re-engineering blood cells (T cells) so that they selectively target cancer cells and kill them. A paper² will be presented at the American Society of Hematology’s annual conference in December reporting on the progress of the Zuma-2 trial. The conference abstract states that of 28 patients who received the treatment, progression free survival after a year was 71%.
It’s significant as many of these patients suffered multiple relapses and had hard to treat variants of the disease. CAR T is not yet a cure and there were some pretty severe side effects (‘mostly reversible’), but it does seem like progress. More patients have now been treated on the trial, so it will be fascinating to see the updated results in a year or two’s time.
² Wang, M.L. et al. 754 KTE-X19, an Anti-CD19 Chimeric Antigen Receptor (CAR) T Cell Therapy, in Patients With Relapsed/Refractory Mantle Cell Lymphoma (MCL): Results of the Phase 2 ZUMA-2 Study. (2019)
I [Sajid Javid] recognised him [Hugh Grant] and put my hand out and said, ‘Lovely to meet you’, and you know what he does? He refuses to shake my hand. He says, ‘I am not shaking your hand’. I am completely shocked. He said, ‘When you were culture secretary you didn’t support my friends in (anti-media intrusion campaign) Hacked Off.’ I think that is incredibly rude. I wonder if people like Hugh Grant think they are part of the elite and they look down on working class people no matter what station they reach in life.
There’s a simple answer – worried, anxious and fatigued. But that’s far too simple an answer, as I’m also hopeful, grateful and optimistic. I feel as if I’m swinging between these two extremes very easily at the moment. Having cancer, and caring for someone with cancer at the same time, is confusing. Nothing I’ve experienced before has prepared me for this.
All of our family and friends have been hugely supportive during the last few months. Thank you to everyone for all that you’ve done for us so far. Jane’s been home a week and the house is filled with flowers. Surgery was successful and her response to chemotherapy has been amazing. The best her surgeon has seen for someone in her condition, so he said.
The day before Jane went in for surgery I had a one year checkup following my stem cell transplant. That news is really positive too – my consultant thinks there’s a 60% chance that I’ll still be in remission in six or seven years. The pessimist in me whispers that there’s a 40% chance I won’t be, but I’m going to ignore that voice for the moment.
All of these things make me hopeful, grateful and optimistic.
The worries, anxiety and fatigue feel just as real though. All things being equal, I’m a few years away from retirement. I enjoy work. Software AG is a great company, my colleagues are good to be around and I love working with our customers and potential customers. But given how unpredictable our prognoses may be, perhaps it’s selfish to carry on. Maybe I should retire early and focus on making other memories instead. Perhaps there’s a middle way and I can do both. I hope so, but what if I do the wrong thing, make the wrong decision? I don’t want (for example) finance to become a problem if we both continue to defy the odds. And I want us to continue to defy the odds and believe that we will! The Bastard Beast™ isn’t going to push us around.
So I have no answer as to the future at the moment and that’s what I’m finding exhausting, both physically and psychologically. I’m not going to rush into making changes. Jane is an equal partner in my decision making and she needs much more time to recover. I thought that having a stem cell transplant was pretty tough, but it is nothing in comparison to being treated for ovarian cancer.
When I was recovering from my stem cell transplant last year, I built a weather forecaster. It uses a Raspberry Pi, a BME280 sensor and a 20×4 character LCD screen. The forecasting algorithm I’d written for it was rudimentary, to say the least. However, earlier on this year I came across a device known as a Zambretti forecaster. These were made by Negretti and Zambra for the UK market in the 1920s.
The Zambretti device uses air pressure, the direction of change, season and wind direction to make a forecast. Depending on what you believe on t’internet, a forecast accuracy of 90% is possible. You can buy replicas from a popular forest-based e-commerce site if you want to. I didn’t, but with the help of a search engine and a number of people who’ve been down this route before, wrote my own Zambretti forecasting algorithm. In FORTRAN 77 naturally.
The results so far have been encouraging. However, I’m of the opinion that the accuracy I’m perceiving may be due to the Forer effect, rather than the goodness of the algorithm. It’s true that different barometric conditions do produce different forecasts. However, I remain unsure as to the real difference between Fine : showers possible, Fair : showers likely and Fairly fine : showers. Not much I suspect.
Anyway, it was producing good enough results to invest a few more pounds in a second LCD display. This retrieves the forecast made by the Raspberry Pi and sensor covered in cobwebs in the garage and displays it in more comfortable surroundings. This time I’ve stuck to C as my language of choice.
The current release of my Zambretti forecaster with remote display screen, with instructions, is available on github. Some (most) of the code could definitely do with improvement …