So what is the Plan?

No specific dreams overnight. I have started painting the end of the room near the log burner. The winter wood situation is now ready and good to go until February. There are a few items left on the checklist.

It seems to me that as I enter my 62nd  year tonight around midnight there is not a lot of change foreseen.

There are a number of medical things upcoming. The wife may / may not stop the lenalidomide maintenance therapy for her multiple myeloma and will soon get back the post breast cancer genetic screening tests. The treatment of myeloma is evolving and the epidemiology complicated by diverse treatment protocols and disease presentation. It seems that the better the initial depth of success with first line treatment the greater the disease free longevity. Studies on stopping lenalidomide maintenance are sparse and of low number participation. Drawing reliable conclusions is tricky. In France they tend to stick to agreed {collective} protocols so we will soon find out if that has changed since the last visit to the haematologist.

It seems to me that a fair proportion of the tests that I have undergone will be let slip “laisser-tomber”. I have a repeat prostate specific antigen test upcoming. Any increase in  number will trigger another MRI and possible biopsy. I need a dental infection all clear before the scheduled hip operation. In the pipeline is a cardio ECG stress test. Assuming all is OK I should sliced and drilled in autumn with round two pencilled in for spring next year. After that I will complete my job application at the Bolshoi. I may start treatment for osteoporosis. The French budget deficit is big maybe they need to spend less on some aspects of healthcare. I will have to do physiotherapy.

We could get a nationalist anti-immigration government which will cast a cloud over our right to stay in Brittany. We could be booted out if they raise the financial threshold for residency.

Being positive we might hope for no recurrence of myeloma symptoms and some enhanced mobility for me for summer ’26. We do need to downsize house. The window of opportunity is before the second hip operation or after it. We have a short visit to blighty booked during which we wish to find out how the UK now feels. From the news here and on UK TV it looks to have gone somewhat down the shitter since we left. We need to see for ourselves. The expectation is that it will be cramped and expensive. The wife managed to grow cavolo nero so we sourced one of the things we missed.  At £4 a coffee for an Americano it could be painful.

Irrespective of the dream content which tends towards the highfalutin, life here will probably carry on much as normal. The lack of mobility will increase over the next few months. The circles I move in are very unlikely to change. I will not be at the fromagerie meeting with big cheeses any time soon. Some people my age are still pursuing high-octane careers and being all stressed out and busy. I have been “retired” for five years and am miles from the greasy pole hamster wheel. It was another world.

Unless anyone is reading the blog in a surreptitious manner, what I type here is read by only a small handful of individuals. If people are snooping and want to get in contact, how might they broach the subject? People do not often think things through.

Of late we have watched a number of Netflix series and in all of these smartphones and social media play a significant part in the plot, the so-called story line. It is another alien world to me. Weird to see text messages as part of a film plot!! We look at a ‘phone on a bigger screen. Seems a bit desperate. And they say Fentanyl is bad.

I guess I have reached the part of life when I have turned into my father, at odds with the current version of modern life. Maybe I’ll start harping after Bing Crosby next. I already think people need to shave and get a haircut…pull their trousers up.

The plan then is to increasingly turn to DIY as the autumn rains arrive. Our pampas grass has just grown fluffy bits, as usual in time for the Atlantic winds to blow in from the wet West. There are some more jobs in the garden but soon the bulk growing will slow.

We have to navigate the medical merry-go-round and that is about all on the dance card so to speak. Aside from the blighty trip it is unlikely we will leave our prefecture.

The plan is not overly complicated…

What is your diagnosis, Bob?

I had a difficult night last night with a lot of pain. This usually happens after I visit Torquemada the physiotherapist. It settles down over the next few days and is generally much better because of his ministrations. He said, “let’s hope you don’t have even more pathologies.”

Some more blood tests results are due and I am sanguine about them. It took many months of rapidly worsening health for the wife’s Myeloma diagnosis. This after a very scary mis-diagnosis which had me contacting people assuming a strict time pressure.

My list of ills is relatively long and we could use Bob’s simple diagnosis. It is unlikely that there will be some overarching diagnosis which explains everything.

We can’t turn back time. And there are many things in life which cannot be fixed, solved or otherwise put right. Social conditioning suggests that an apology can make things better. An apology does not alter Karma and forced begrudging “false” apology makes things worse karmically speaking. If there is some genuine acceptance then that might take the sting out of the accrued karma, a little. What our parents tell us in kindergarten does not really work, “say sorry to Sally for nicking her Maltesers!!” It is a pretence often.

During the night I had a brief dreaming segment concerning Myeloma UK. It had occurred to me if we move back to get involved there. I have probably read more medical-disease-epidemiology papers than most. When I have interacted from here, I have come across a UK based parochialism, “that is the way we do things here!”  Best clinical practice in France, Europe and the USA is not followed due to the accountants at NICE. In a real sense if you do it well first time, it saves money instead of doing multiple rounds of cheaper less effective treatments.

Luckily the patent on Revlimid has expired.

There is a well paid career path in charity management and I am not entirely convinced that the high salaries are justified. I find the heavily PR oriented and sanitised Web presences a little unreal. I understand that they want to give hope, but they do airbrush reality. I understand that they are not aimed at the likes of me. They are often not very real and people revert to blogs and video from genuine human beings. Things need a human face not some corporate blah.

When I was looking for a job, I got interviewed for several board positions. Because I was a bit young and not one of the gang and all praising, I did not get the job. I was asked what I could bring. I said new ways of thinking, some energy and something fresh. Comfortable places with cobwebs don’t like that sort of thing. People in power although they like the theoretical idea of a functioning challenging board, do not really.  Itchy back disease is prevalent. I am more than 90% sure that I would have brought, eventually, positive change. I am very organised and good at process.

Apple carts do not like to be upset.

Sometime gatekeepers keep useful people at bay.

Anyway, only my alpha-globulins have come back low. Low alpha 1 can mean alpha-1 antitrypsin deficiency which can cause lung problems like COPD and wheezing!! This can be genetic…

Both alpha 1 and alpha 2 low can mean liver problems.

What do you reckon Bob?

Serum Protein Electrophoresis (SPEP) Test

I have been looking at results from these since December 2021 when the wife had her Myeloma diagnosis. There was a large monoclonal peak in the gamma globulin area, a characteristic “finger print”. I have seen dozens of these electrophoresis traces. Her therapy quickly reduced the monoclonal peak below the detection thresholds. The technique is key to the diagnosis of Myeloma and smouldering Myeloma.

My blood is having one of these tests done today. I have found that Canadian healthcare web sites have a nice balance of detail and not treating you as a numpty.

——–

South Tees Hospital Pathology

“Serum electrophoresis is essential in the investigation of suspected paraproteinaemia and immune deficiency. Characteristic patterns are also seen in the presence of an acute phase response, nephrotic syndrome, alpha 1 antitrypsin deficiency, inflammatory and infective disorders. SPE is performed on all specimens submitted for immunoglobulin quantitation to check whether the immunoglobulins are polyclonal or monoclonal proteins. Polyclonal increases are due to and increased activity of numerous different lymphocytes and are associated with a wide range of infectious and inflammatory diseases including liver disease. The main value in serum electrophoresis is detection of monoclonal immunoglobulins associated with lymphoid malignancy, myeloma or related haematological disorders. Since quantitative immunoglobulin measurements cannot differentiate between monoclonal and polyclonal immunoglobulins, paraprotein determination (monoclonal protein) must be carried out by quantitation of bands obtained on electrophoresis.”

————-

From https://myhealth.alberta.ca

“The serum protein electrophoresis (SPEP) test measures specific proteins in the blood to help identify some diseases. Proteins are substances made up of smaller building blocks called amino acids. Proteins carry a positive or a negative electrical charge, and they move in fluid when placed in an electrical field. Serum protein electrophoresis uses an electrical field to separate the proteins in the blood serum into groups of similar size, shape, and charge.

Blood serum contains two major protein groups: albumin and globulin. Both albumin and globulin carry substances through the bloodstream. Using protein electrophoresis, these two groups can be separated into five smaller groups (fractions):

  • Albumin. Albumin proteins keep the blood from leaking out of blood vessels. Albumin also helps carry some medicines and other substances through the blood and is important for tissue growth and healing. More than half of the protein in blood serum is albumin.
  • Alpha-1 globulin. High-density lipoprotein (HDL), the “good” type of cholesterol, is included in this fraction.
  • Alpha-2 globulin. A protein called haptoglobin, which binds with hemoglobin, is included in the alpha-2 globulin fraction.
  • Beta globulin. Beta globulin proteins help carry substances, such as iron, through the bloodstream and help fight infection.
  • Gamma globulin. These proteins are also called antibodies. They help prevent and fight infection. Gamma globulins bind to foreign substances, such as bacteria or viruses, causing them to be destroyed by the immune system.

Each of these five protein groups moves at a different rate in an electrical field and together form a specific pattern. This pattern helps identify some diseases.

Serum protein electrophoresis is most often done to help diagnose and monitor a wide variety of conditions. These include:

  • Some forms of cancer.
  • Problems with the kidneys or liver.
  • Problems with the immune system.
  • Conditions that lead to poor nutrition.

High values

High values may be caused by many conditions. Some of the most common are shown here.

  • High albumin: Dehydration
  • High alpha-1 globulin: Infection; inflammation
  • High alpha-2 globulin: Inflammation; kidney disease
  • High beta globulin: Very high cholesterol; low iron (iron-deficiency anemia)
  • High gamma globulin: Inflammation; infection; liver disease; some forms of cancer

Low values

Low values may be caused by many conditions. Some of the most common are shown here.

  • Low albumin: Poor nutrition; inflammation; liver disease; kidney disease
  • Low alpha-1 globulin: Some genetic problems
  • Low alpha-2 globulin: Kidney disease; some cancers
  • Low beta globulin: Poor nutrition
  • Low gamma globulin: Problems with the immune system

Given the high levels of ferritin yet normal levels of transferrin in my blood, the primary screen has to be for liver disease. But the bullet point for cancer above has quite a list behind it. I guess that the beta globulins may be abnormal in some way because of Iron. Anything weird in the gamma region means more tests…There are rheumatological factors. The tests show inflammation. I don’t think at 100kg I class a malnourished.

Anything non-standard will mean more tests [probably].

I’ll speculate that more tests are somehow “on the cards”.

A Bit of a Nodal Point…

It has been an observable in my life that when life trajectory is approaching a nodal point for change, where different paths might offer, that things tend to stack up like London buses running behind schedule. Events converge, apparent available time runs out and a number of crises manifest. Things start to get hectic and it is difficult to keep clarity.

At the moment we have the selling up house and buying a smaller one choice. That might be in France or UK. In any case a move. I could do science “A” level tutoring in the UK for a few extra quid a month.

Also, there is an increasingly pressing need for me to get replacement hip surgery, which adds to the mix. Unfortunately, I could not find contact details for a traditional Fairy Godmother on the internet. Hence, the joints are only going to get worse and the pain is unlikely to diminish.

We have the Myeloma sword of Damocles hanging over as per usual.

The feasibility of a nanna-flat in the UK looks OK. There are less bungalow type houses here. The cost of living in the UK is a lot higher. We are in the administrative system here and could qualify for a 10 year right to live card next year.

I am not seeing anything new that I want to do in our garden of two acres, so the time to move is now or around now. That is also the feeling. There are a few before sale internal DIY tasks which I/we can hack. All of this is very normal and mundane.

I know from what I am picking up subjectively that there is a small finite possibility that events could transpire which would markedly change the trajectories. They are related to my Tibetan Buddhist dreams. They hint at a trajectory far away from nanna-flats, Zimmer frames and secateurs.

That febrile trajectory is not close to taking shape, though inquiries may have been made today. It is a lot quicker to ask me direct than to speculate.

A simple small win on the lottery would enable. It would buy room to manoeuvre on the house move front. It would not have to be much…

I have had some more titanium put in today. I have an implant fitted in my jaw into which a false tooth will be screwed at a later date. So, yippee, antibiotics for a week.

Stuff continues to stack up…

Travelling With a 511 keV Gamma Emitter Tomorrow

We are a four cancer household of two. I have had stage 3 colon cancer and a couple of basal cell carcinomas. The wife has recently had a lumpectomy for breast cancer, stage 1, followed by 15 sessions of radiotherapy. Tomorrow, she has a Positron Emission Tomography {PET} scan to check on the state of play with her multiple myeloma, it will be an 18F – FDG PET scan. The [18F] fluorodeoxyglucose shows sites of hypermetabolism associated with regular cancer or myeloma. It decays by positron emission, an up quark changes to a down quark.

The annihilation of the emitted positron causes two ~511 keV gamma “rays” emitted at exactly 180 degrees to each other to conserve momentum. The half-life of 18F is around 110 minutes. The drive back from the centre of nuclear medicine is half an hour, we have a smallish Peugeot 207 and it takes place at less than one half life after injection.

According to what I have read in the scarce literature, this car journey gives me an exposure of ~0.4% of the annual average exposure to radiation.

Perhaps there is a need for more research on what happens when a patient leaves the nuclear medicine centre? There are health and safety assessments for the healthcare practitioners, what about the carers? This is the third journey like this for me. There will be more.

We have an appointment with the radio-oncology specialist and the haematologist week beginning 2nd December.  We will know a little more about what our immediate future holds by the end of that week….