Our Lives Will Never Be the Same

It is pretty obvious from here on in that our lives will never be the same and that this year is going to be harsh. The wife already feels like a pin cushion, I imagine.

There are some minor signs of remission already and these have enabled some more dignity and less dependence.

Psychologically there is a sense of grief, a need to perhaps grieve the loss of one way of living before we find out what the next looks like.

On going there will always be a sword of Damocles pendant. It will have Myeloma engraved on it.

It is really strange to hear on the UK media people arguing about how long they might need to isolate for, before they can go out for a pint. It is a whole other world. People worrying and stressing about petty shit. Arguing the toss…

foxtrot foxtrot sierra

Tomorrow is the last dose of monoclonal antibodies of cycle one.

After tonight no £300 pills for a week…

Things like this, make you realise how very petty and self-interested people are…

Our lives will never be the same as they were…

Myeloma Not Sarcoma

It was two weeks ago when I had a conversation with an Intern at CHU Rennes. She said that the pathologist had a hypothesis that wife might have Myeloma and not Sarcoma. They were re-examining the previous biopsy and doing a diagnostic electrophoresis test of her bloods.  The latter would give a better than 90% diagnosis.

In a sense the Myeloma journey then started, as a nameable entity, on the 3rd of December.

Needless to say, I read multiple epidemiological articles on Myeloma and as a result the wife’s PET scan looks a lot less frightening.

If any cancer diagnosis is to be preferred, then Myeloma is “better” than Sarcoma, especially in terms of comparative longevity.

Yesterday was day 1 of the first cycle of chemotherapy for the wife, the day after an A&E blues and twos admission.

I’ll start pricing up oxygen concentrators over the weekend. To have as contingency and for the occasional hour or two of therapy. The first treatment plan is six months long, which is a lot longer than the horizon we had been looking at.

I have just read Myeloma Matters published by Myeloma UK.

In it there are updates on research, life stories and fund raising.

There is also a French equivalent.

It looks like a long road. The new drugs are expensive and made in Tredegar of all places. The stories all talk of a good remission to start with, and the theme of a convoluted and lengthy diagnosis is a common one.

How come the awareness of this disease is so low?

The rate of diagnosis is going up. Is that because of better diagnosis or and increased prevalence?

I am probably going to learn a whole lot more about this.

I have the electrophoresis data on the dining table, and it looks very much like all the others I have seen in the literature. That can’t be a hard test to do.

When the intern was talking to me, she said that they were going to use a technique called “electrophoresis”. In my mind was “look love when I was a Ph.D. student, I used to demonstrate physical chemistry to first and second year would be medics.” They were not a very scientific/ quantitative bunch back then.

A few days after she called from the Sarcoma specialist unit and the wife was ambulanced to a Haematologist. The diagnosis was confirmed and after a committee of bods agreed both with the diagnosis and gave the go ahead for the expenditure, treatment has started.

What lies ahead remains to be seen but it has a lot more shape and direction to it than before…

There is even sense of purpose. The haematologist said the target, in years, which he had in mind, 10.

This was a whole lot better than the months with the other putative diagnosis

I think I shall have a glass of wine shortly…

It has been a vey strange month or so…

Perhaps Santa has given us an early present…no reindeer needed.

People Do Not Like Being Real

Big sigh…

They do not wish to face an uncomfortable reality. Reality makes them want to shit bricks, so they take refuge in platitudes. They mean well, but…platitudes do not really help.

Over the last few days or so I have been the bearer of bad tidings to several. The wife has metastatic, stage 4, disease.

On Friday, the doctor bottled and left if to me to spell it out to her. It is not the first time that this has happened. Maybe I have a bigger pair than most.

People do not like being real.

I know what this means and come what may I can hopefully handle it. It would be better if it was me, suffering, but it is not.

I cannot control everything.

Yeah, it is interesting at times of crisis you can see how far some people have their head far, oh so far, up their own arses. Crisis demarcates and brings clarity.

I reckon me being real has been at the core of many of my problems with “political” society. They foxtrotting hate it.

I do not give a shit right now.

Big sigh…

I have had a nice pizza and tomorrow the space aged car on autopilot will take me to the hospital one more time.

I have written to my pal Elon Musk to thank him for the taxi service.

He was already putting AI into 10-year-old Peugeot 207s. Luckily ours came from area 51.

Just like the Bill Gates vaccine chip…

Reality?

People do not like it.

What a Whirlwind Week!

It is cold and windy outside. I have gotten drenched with rain and hail. The log burner is now up to temperature. There are multiple incense sticks burning. There is a glass of Sauvignon Blanc next to the mouse mat. To my left are the detailed 18F-FDG PET scan reports which I have been trying to interpret and translate. I think I have the gist of them now.

Well probably more than that. I can understand medical journal articles. Sometimes comprehension is a curse and not a blessing.

At the hospital, face mask on, with my alcohol gel washed hands I went to the wife’s now calm single room and set up the 4G box for a Skype call with her concerned brother. I had summarised the findings to him the night before. We can do comms from there, from that sanitised place. Comms operational. You have to wear a mask to see someone with an advanced cancer. It is protocol don’t you now.

Foxtrot foxtrot sierra!

It was only last Sunday that I took her into A&E. What a week! After removal of shit loads of liquid from her lungs again, her oxygenation is above 96%.

She is off to the University Hospital in Rennes next week. So, I might treat myself to a really nice hotel room so that I can visit in style. I know how to do hotels. Rennes is 140km from here. I might rent a gite, later on.

The bloody car already knows the way to the hospital. I don’t have to drive it; it goes there on its own by autopilot.

When I arrive usually at 1pm, 1.5 legs lady is sat in her wheelchair by the front door having an after-dinner smoke. We will perhaps be saying tu to each other soon…

Big sigh…

They don’t do afternoon tea or cucumber sandwiches here.

So, I will take the French coffee press, some finest Brazilian ground coffee, and a kettle.

I’ll smell the damn place out with some fresh gourmet damn fine coffee!!

I had better have something to eat…now.

Chilli chicken and pilau rice, methinks.

Immunohistochemistry, Strimming and Autumn Stew

Autumn is the time of year for the root vegetable. I have been preparing these for tonight’s beef stew. The wife has had her first go at bulgur-wheat dumplings and the 30-year-old Migros Swiss wok is now bubbling away.

This morning we finished off clearing around the lake and it is good to go now for February or March. My shoulders and hip are aching from a full tank of gas strimming session. I have ordered some new spark plugs because the darned thing is getting difficult to start. It looks a tad bald head around the pond. At lunch time I saw the heron, the cormorant and the two “familiar” ducks. The cormorant has a perch on a concrete block in Le Jaudy. White guano marks the spot. So, it is getting to be a regular chez nous.

This afternoon I have been researching the immunohistochemistry from the wife’s biopsy. In France they are thorough. I have been very busy getting my head around it. I now know a lot more about various cancer markers and what the stains show up. Someone must have nimble fingers to do all that work with a tiny sample! I am about 90% prepared for any visit to an oncologist next week.

There is a general feeling that most of the Brits around here are not all that smart simply because they do not speak French.

Depending on the circumstance I might need to lower my spectacles down my nose, shift into Ph.D. viva mode, peer over them and ask, and ask.

Even though I only ever eat roast beef, I might have a few surprises up my sleeve.

Good news is that there is a proton radiation therapy facility only three hours’ drive from here.

Based on what I have read and attempted to understand I have few suggestions apropos of diagnosis which I may or may not offer.

What a weird day!

Hard physical labour followed by trying to get my head round an entirely new field, immunohistochemistry

You can’t make this shit up…

Reading Cancer Literature, Modus Operandi, and The Pond

Yesterday we did a lot of pond maintenance which involved cutting back the dying irises and reeds. As a result, we had a full trailer, and the pond is starting to look like a navy marine recruit after their first buzz cut, we are about 80% done. We took the trailer to the tip this morning so we are good to go and can perhaps finish the autumn buzz cut tomorrow.

If you work with people over a period of a decade or more you come to understand their modus operandi, their way of thinking and their parameter space of how they view the world. Such a modus does not change that much over time and it becomes predictable even boring. Some people imagine that the offer of money is so tempting as to be irresistible. This is because they project their mindset and “values” on to others. They imagine that an agreed corporate “solution” will be an offer which one may not refuse. They will sit round a table in a nice room and make plans for Alan. Maybe they have prepared a fait accompli to offer and manipulate with.

Sierra Sierra Delta Delta

After the biopsy result on Friday, I have been delving deep into the literature on sarcoma. Checking through the histology and genetic markers to understand what they mean. The biopsy was inconclusive, and I need to get my head around the possibilities. Way back when my mother had a biopsy, because she was a smoker, they concluded lung cancer before getting a full evidence set. They were wrong. People always want the bleeding obvious and dogmatic to be true. So many conclude way before it is time to conclude.

Tut tut tut a smoker deserves to die.

Aren’t human beings truly wonderful?

INFJ – NiTi – Contingency or Catastrophe?

Because of recent events a whole heap of fear has arrived in this house. We did not order it from Amazon.  It is not my fear. I have “had” colon cancer and the wife currently has a possibility of a cancer diagnosis. She is a bit of a control junkie and to have to wait for news on a biopsy is freaking her out a little.

{NiTi means introverted intuition, introverted thinking}

As an INFJ I am more than a little future focussed and contingency is one of my favourite words. I am often to be found scoping out contingencies…preparation and planning…Because of my NiTi habit I know when there is a contingency and can easily stop it morphing mentally into an imagined catastrophe. I have control of my mind. In a bizarre way planning for the worst is very calming for me. It does not matter if my plans never come to fruition. I like preparing. I do not project catastrophe; I do like to be ready.

I’ll speculate that I am in general more able to see and anticipate putative scenarios than most and that the scope of my envisioning is well above average.

There is a problem in that this envisioning can freak others out because they imagine that what I have speculated upon is a fait accompli, it is on the cards, foretold in the crystal ball, whereas for me it is simply process.

Maybe I am a cold analytical Mike Foxtrotter…

I’ll make a comment here.

Fear is a virus way more transmissible than SARS-CoV-2. No mask, no vaccination can stop it from promulgating.

We live in fearful times:

I’ll offer the Bene Gesserit litany against fear, it works, try it…

    “I must not fear.

    Fear is the mind-killer.

    Fear is the little-death that brings total obliteration.

    I will face my fear.

    I will permit it to pass over me and through me.

    And when it has gone past, I will turn the inner eye to see its path.

    Where the fear has gone there will be nothing.

                Only I will remain.”

Moles and Medical Journal Articles

I have just about reached my limit on medical journal articles pertaining to bone cancer for today. It is a bit strange reading about what might happen to someone else. It was easier when it concerned me. There is a juxtaposition, high tech. journals this afternoon and this morning mole catching. This little blighter came over from the DMZ and is now in the vicinity of the pampas grass.  Judging from the size of tunnel this one is not a big specimen. There are now five traps out for it, and I will check again in six or seven days.

We have been having on and off difficult conversations, during the day, in order to get the vocabulary together for tomorrows GP appointment. The wife is having a nap now, the pizza dough is rising in the kitchen. I have had two major operations and three minor ones. My colon resection was around six hours, I was fully conscious for my hip pin insertion. I watched the technique of this on You Tube yesterday. I can still remember the judder of him going in with his power drill.  I have also has three polypropylene meshes inserted in my inguinal region and a tendon repaired in my thumb. I have now had general anaesthesia five time. Because I can detach well, I did not suffer much in terms of fear and catastrophising. I got the pain just like everybody does. I don’t wish it on anyone.

I have a fair idea of what may lie ahead now, and it is looking like we will be moving, selling our house with river frontage and three years hard labour in the garden. I am guessing that it is no longer a question of if, rather when. We could always pay someone to do some gardening, I suppose, in the short term. It would be a shame to let it fall back into disrepair.

We will find out what our tiny, mildly hyper, doctor has to say for herself tomorrow morning. I am guessing that any operation may be at one of the bigger towns, St Brieuc, Brest or even Rennes. Biopsy first, then either an operation or chemo followed by operation.

And less than sixty hours ago, none of this thinking was on the cards, so to speak…

Another Life Changing Conversation

We are not long back from the Hospital and the wife is sleeping upstairs{hopefully}. This morning she had her first CT scan with a high Z contrast agent. Unusually we spoke to the doctor, and he said probably bone cancer.

So, the merry-go-round begins. GP appointment on Monday followed by at least a puncture biopsy and dependent on that surgery.

It will need a general anaesthetic. There will be the post operative heparin.

What I / we thought the future may have been has just changed…

Once again, I found myself looking up survival rates…

It is too early to say…

Another life changing conversation…

The Covid Yo-yo

Numbers in France are increasing specifically in the overseas territories, Corsica and the South. I know where I would be going on holiday if I was French. I would come here to avoid the plague density. We are still at one part per thousand. I wonder is the yo-yo damping and how many more oscillations there are to go?

Over the next three weeks or so I am placing myself in the riskiest positions yet. Although I have had two Moderna vaccinations I also have four medical appointments. I will have to leave the compound.

On Friday I go to see the anaesthetist. Next week I go to see the dermatologist to have what might be basal cell carcinomas inspected. These were caused, possibly, by being hit by frequency doubled Lambda Physik Fl2002 and Fl3002 dye lasers. Whilst aligning the Ultra-Violet beam the UV struck my left hand on several occasions. UV and DNA don’t mix all that well. The dermatologist may cut them out there and then or I might be back for yet another appointment. Then I get a coronavirus PCR test and if that is negative, I get a colonoscopy to check for polyps and cancer.

This means that I will be in proximity indoors on four occasions before the end of the month.

It is a bit of a whirlwind…

Hmn…