Pilgrim faces 2021

Happy New Year!

As with the preceding thread, this is to keep separate general news etc. from my review threads, so those who only want to read book reviews do not have to wade through personal stuff.

I fear health news may dominate again, but anyone who wants to add any comment is welcome to do so.

Happy New Year! I sincerely hope you have more good news than bad to report this year.

Happy new year! Here's hoping for more good news in 2021.

Hoping your health improves in the new year.

Bet wishes from Mrs H and me for 2021.

>3 -pilgrim-: I'm here for the longhaul....

And a big welcome to Clare, Gale, Richard & Mrs H, majkia and the BookStooge!

Happy New Year! I hope 2021 will be an improvement on 2020.

First medical news of 2021:

Last Thursday I received a phonecall along me when I would me arriving at my chemotherapy (that day). This was, of course, the first I had heard about it. They know my phone is not working, and I have been actively prevented from providing alternative contact details (as described here). I only found out because someone had the idea of phoning my lodger's number. Too late to get there in time, of course.

The nurse then phoned me back you say that they have another appointment for me already scheduled for 7th. (Also note previously notified.) So my first chemotherapy of 2021 is now scheduled on what I would consider to be Christmas Day.

What an ideal way to celebrate! (she says sarcastically)

>11 -pilgrim-: I expect that chemo days aren't the most pleasant day of the week, but I'm still wishing you a blessed Christmas today. God bless.

>12 Majel-Susan: Thank you!
No, today has been particularly awful.

Your thoughtfulness is much appreciated.

>13 -pilgrim-: (virtual hugs)

#2 medical news of 2021:

On Tuesday I went to the hospital for my appointment with the palliative care consultant. When I arrived, the staff were very apologetic, but they had been notified a half hour earlier that the consultant "is carrying out his consultations by phone today".

I pointed out that this would be difficult, since, as I had notified him in November, I do not have a working phone. (The Tier 4 lockdown means that that the shops have all been closed, so that I cannot get it repaired/replaced, and the few Tier 3 weeks that did exist, I was too ill to leave the house - as a direct result of following the advice that he gave at our last consultation. I cannot borrow someone else's phone for an indeterminate length of time on the basis that he intends to ring "at some point".)

This group of nurses were extremely helpful. They had me wait in their lounge until they were able to locate and contact him. They then arranged for him to phone his own office, and for me to take his call there.

In this phonecall he explicitly denied what the nurses had claimed he had written in the electronic notes, or indeed that he had sent anyelectronic notes to the chemotherapy nurses at all.

He reiterated that my understanding of his post and position was correct, not that of the nurse who had asserted that my thinking otherwise to her was evidence of the "mental confusion" that she claimed he had "warned her of" in these same notes that he states do not exist.

But, having insisted at our last meeting that I must keep requesting from my GP the increased painkiller dose that he wanted me to take, despite the fact the GP had repeatedly refused to increase the amount she prescribes, and having insisted that I continue to increase the amount I took, despite having warned him that the already increased dose meant that I was now due to run out of painkillers in a few days, he refused to take any responsibility for the fact that (after the extremely unpleasant experience of going from his increased dose to zero on a long-standing medication) I now have no access to painkillers - because of following his insistent instructions.

However he also verbally confirmed to me that he had instructed the increased dose (while the nurse claimed those mysterious notes state that he had not authorised the first increase, and that thinking so was "evidence of mental confusion" - a difficult position to maintain given that I do have his written instructions!)

So
(i) I still have no prescription pain relief - for either the chronic conditions of the cancer, which is making sleep rather difficult;
(ii) I now have the consultant flatly contradicting what the nurse claims he has said and done.

Since she indicated a colleague to confirm her reading of these "notes", I had concluded that my problem was probably with the consultant, for some reason.

But now that he flatly and categorically denies having written or said any of the things that the nurses attributed to him, I have got the unpleasant situation that someone is not telling the truth.

In this situation it is hard to give credence to the mantra that "we are all doing our best for you".

It would have been better for me to have stayed be GP's "maximum dose" - even if that was below the minimum recommended in the manuals (and so low that the consultant was of the (correct) opinion that I would notice very little improvement - than go through the unpleasant experience of being acclimated to an effective dose and then dropped suddenly to nothing at all, with all the ensuant side-effects.

And how is a nurse shouting lies about me, to humiliate me in front of other patients benefit anyone except her?

(If the consultant did write those notes, then surely he is obliged to admit this, rather than falsely misrepresent colleague's behaviour.)

It is all very depressing. Given the events of the past few months, I have lost all faith in these people.

>15 -pilgrim-: what the blazes is WRONG with these people???!!!

I was startled to find the news full of accounts
(I) castigating the churches in Greece for opening for Epiphany (under socially distanced conditions, and careful negotiations with the Greek government)
(ii) castigating the Bulgarian Orthodox for "swimming for the Cross" as usual (part of the "blessing the waters" ceremony for Epiphany) - contrary to government instructions;

from which I conclude that both Bulgarian and Greek Orthodox now follow the Gregorian calendar.

As Hugh expressed in December, I too find this completely unexpected.

https://www.euronews.com/2021/01/06/orthodox-christians-in-bulgaria-ignore-covid...

>17 -pilgrim-: I conclude that both Bulgarian and Greek Orthodox now follow the Gregorian calendar.

That is actually surprising, considering that when my family visited Greece for Easter 2009, we were very surprised when we went in search of a (Catholic) church that would be celebrating Easter that Sunday, and found that they were all following their Orthodox tradition and could only find Palm Sunday Masses.

ETA: Bummer, my memory... But they were still observing Lent

>18 Majel-Susan:
According to Wikipedia:

The majority of Orthodox Christians (Russians, in particular) follow the Julian Calendar in calculating their ecclesiastical feasts, but many (including the Ecumenical Patriarchate and the Church of Greece), while preserving the Julian calculation for feasts on the Paschal Cycle, have adopted the Revised Julian Calendar (at present coinciding with the Gregorian Calendar) to calculate those feasts which are fixed according to the calendar date.

Which sort of explains it, but makes things rather difficult for pan-Orthodox parishes.

There is currently considerable antipathy between the Slavic and Byzantine patriarchates over the recognition, or not, of the Ukrainian Orthodox Church as autocephalous. If there are differences in practical observance as well as political issues, things are likely to get complicated... again.

And I will stop there. A simple practical consideration appears to be heading rapidly into fields of both religion AND politics!

If any Dragoneer happens to know more about the calendar changes, I would be grateful if they would message me.

>18 Majel-Susan: The difference can vary. Since the date of Easter follows the lunar calendar, and there is currently a 13 day discrepancy between Gregorian and Julian calendars, this can change when Easter is "triggered".
https://greece.greekreporter.com/2018/04/08/why-greek-orthodox-and-catholic-east...
I remember Easter coinciding for both calendars in 2017.

So your memory could well be correct.

>15 -pilgrim-: Oy. Almost makes you want to have these calls on speakerphone so everyone can hear all at the same time and remove the he said/she said nonsense.

>21 Narilka: I think it is part of the system. This way they always have deniability whenever convenient.

After all, I have a written copy of the consultant's instructions, in his handwriting, and I was not alone when he gave them - but that did not prevent the nurse from claiming they never existed.

#3 Medical news of 2021

So, having had the consultant's denial of everything that the nurse claimed that he had written, I went early to my chemotherapy appointment, and raised complaints about both the events described in >15 -pilgrim-: and here, and the receptionist.

The response of the ward sister was "I am sorry that you have been made to feel like this."

Notice, that she is very clear that it is not how I have been treated that bothers her, and the clear implication that it is me who is being unreasonable in minding having my treatment blocked etc. in this way.

One positive point, was that she got the consultant to phone her back and speak to me, so I got finally got the result regarding the CT scan that I have been waiting for.

The negative - this all took too long, so that they cancelled my chemotherapy - so I am to come back next week.

The difficult part to write about is the result. Apparently my tumour was reduced in size by around 50% by the radiotherapy. I am now not counted in the "imminent end of life" category.

This should be great news, right?

But when I look at what my life consists of: constant pain, 4-5 days of feeling really ill, maybe 1 day Ok, then off to the hospital to be insulted and bullied, and then repeat all over again...

Looking back over the past year, the week in January, and the week in December, when my treatment has been stopped - they were the best parts of the year.

I don't feel joy at the prospect of continuing endlessly like this.

>24 -pilgrim-: (((hugs))) I hope things get better. Are you able to get any more painkillers?

>25 NorthernStar: No. Only the over-the-counter ones, which make no noticeable difference.

I have been trying to find a solution for the past 2 months.

The painkillers have never completely removed the pain - I assumed that was why the consultant was telling me to increase the dose. But they did make a difference.

And I would rather have had some than none.

>26 -pilgrim-: - I hope you are able to get more before too long, then.

>27 NorthernStar: It may be possible to get a new GP once the lockdown ends, but that is looking likely to not be until March.

I am likely to be exhausted, grumpy and unable to concentrate - my usual mental responses to pain - for a while yet. :(

Happy Old New Year!


Health, success and fewer worries!

ETA: translation

And to you!

Good morning.

Good Morning! Lovely sunrise.

>31 -pilgrim-: That looks much nicer than what I usually see when I look out my window in the morning!

>31 -pilgrim-: Pretty morning!

>33 BookstoogeLT: What is your view like, then?

>31 -pilgrim-: We has a perfect clear winter morning here yesterday, and it stayed perfect for most of the day. Now it’s dropping a bit of sleet on us.

>35 -pilgrim-: I see another apartment building approximately 100-150 feet away :-(
or if I turn to another direction, a whole lot of self storage units 200 feet away.

At least we're on a dead end street so we don't have to deal with traffic.

>31 -pilgrim-: Lovely view, and I like the slanted window you’re viewing it through. It’s fun to get a small glimpse of where people live.

>38 YouKneeK: The downside of an attic bedroom is being woken at ungodly hours by a raven tap-tap-tapping...
Tapping on my window pane...

>39 -pilgrim-: "tis some goofy bird", you muttered
"They can tap all day, in vain..."

>40 fuzzi: A bird indeed - and that is plain. :)

>41 -pilgrim-: 😁😁😁

>42 fuzzi: In don't think the esteemed Edgar has anything to fear from us.

>43 -pilgrim-: certainly not from me.

I'm no poet, don't I know it!

I have not been writing much in this thread because too much is going on, and trying to get anything practical organised when you can only really sit at a desk, let alone anything more active for 1-2 days out of 7, and one of those involves a trip to hospital.

I feel like a duck; I may seem calm, but I am paddling frantically beneath the surface, trying to stay afloat.

I have been a little more functional recently because if having to miss two chemo sessions in succession recently, which is not in itself a good thing.

The last was caused by how ill I felt after going for the Covid vaccination. Unfortunately all the (known) symptoms of the vaccination aftereffects (temperature, aches, strange taste, nausea, cursive problems) can also be symptoms of the virus itself. When I notified the cancer ward, among with the fact that my lodger is also ill (and unvaccinated), with similar symptoms, they said that I could not come in for treatment until he has had a Covid test with negative results. So now we are waiting..

And yet again I get a nurse complaining that I did not attend a CT scan that they never bothered to notify me of!

I point out that I cannot attend unless someone tells me that the appointment exists -
and THEN I get subjected to a lecture on the importance of my attending.

Evidently THEIR failure to notify me is MY fault. Or am I supposed to be telepathic?!

I am getting sick of this. Their incompetence obviously does harm me, since it IS mportant that I attend - but instead of an apology, I in addition have to endure being insulted by the obvious assumption that I am lying and for some weird reason want to be harmed like this.

>46 -pilgrim-: I guess it's hard to expect accountability when no one enforces it.

Sorry to hear of your continued issues with the NHS.

>47 fuzzi: Thanks, fuzzi.

"Urgent" appears to have a different meaning within the NHS to in the world in general. I have been notified of my "replacement" appointment - in April!

Meanwhile, my luck is still out. When I went for my chemotherapy appointment last week, I did not it receive it, because they could not get a blood sample or of my arm!

And am now unwell, so could not go to the replacement session on Monday.

((((((((((((((hugs))))))))))))

>49 fuzzi: *returned with interest*

Further to >48 -pilgrim-:, I have just been told that I cannot have chemo today because, although feeling better than on Monday, my symptoms are such that I have to go for a Covid test.

-pilgrim-, your harrowing story continues to astound me, and your courage and persistence inspire awe. Thank you for staying with us here and letting us follow your story. I've found that support from people we know only online is real and can mean a great deal.

>51 -pilgrim-: dhhffbnuyresdjlougggjkihvczaawwgjoop..nb

::slamming head on keyboard in frustration::

>51 -pilgrim-: Good grief :( Sending virtual hugs.

>51 -pilgrim-: Sorry for such a run-around and waste of your time! I'm glad you had your vaccination though.

>52 Meredy: Thank you. Yes, that does mean a lot to me.

I am afraid some things are to painful to write about here; there are times that I despair. I may not be as brave as you think.

I have been alone a long time, and I do appreciate the support of people here. >53 fuzzi:, >54 Narilka:, >55 Karlstar: Thank you all.

>56 -pilgrim-: It's only courage if you are scared. What's the need of bravery if you're actually fearless?

(And yes, there are things too deep and dark to write about except in private, if at all.)

People have been telling me lately that I'm stronger than I think. I haven't believed them yet, but I have been coping without falling apart. If that counts, then, I happen to think you show us your strength with every post.

>56 -pilgrim-: I can only agree wholeheartedly with every word >57 Meredy: said.

>56 -pilgrim-: sending virtual hugs. Your courage and strength amazes me. We see it even if you don't.

I am behind on everything. Have not really felt up to par since the vaccination, and the abortive trip to the chemo really took it out of me.

Then last Friday was told not to attend chemotherapy because I had Covid-19 type symptoms.

Was even worse over the weekend, so only managed to get out to a Covid-19 test on Tuesday.

>60 -pilgrim-: Sorry to hear all of this :-(
So getting the vax doesn't move you into "safe" territory as far as the medical system is concerned?

>61 BookstoogeLT:
The NHS requires you to notify them of you have any of the big 3 symptoms. After listening to the description, the nurse said that I needed testing.

I have only had the first dose of the vaccine so far - the next is due in April.

Still ill, so no chemotherapy today either.

Do you have your covid test results yet?

>64 Meredy: Result negative.

>65 -pilgrim-: That's a great relief.

>66 haydninvienna: Actually no.

Because of those symptoms, the nurse from the chemotherapy ward still did not want me to come in - presumably because I definitely have something, even if it is not Covid-19.

She told me to phone the National Cancer Treatment Helpline. So after the usual run-around - wait in phone queue to leave a message, wait for callback, describe symptoms, wait for her to describe them to nurse, answer more questions, wait for more description to nurse...I was then told that I need to be assessed at a"Cancer Assessment Centre".
Had to wait whilst the clerk tried to get in touch with the centre. She had difficulty getting hold of them (and drove my lodger crazy by repeatedly ringing to tell me that she had failed to get through to them).

Once she had, they told her they wanted to carry out a phone assessment first. So I had to wait for another call back

And when they did, IT WAS EXACTLY THE SAME WARD I HAD SPOKEN TO 6 HOURS EARLIER, asking "what exactly led you to phone the Helpline"!!!

When I said, because your colleague told me to this morning, she was very puzzled - because apparently the nurse I had spoken to her not bothered to put any reference to this "in the notes"!

So I had to wait again until she found her colleague, to find out why I had been told to do that.

She then told me to come into the hospital. Because I was possibly infectious, I was to go to the Medical Assessment Unit, "but it will be the oncology team who see you".

After arriving, I had to wait another couple of hours (despite having an appointment), about 1 dressed and another undressed -and freezing.

They did ECG, chest X-ray - but failed to get a blood sample either from arms or feet. (Did I mention I have poor circulation and it was freezing?)

The junior doctor was the first person in the NHS who had treated me like a human being for a long time - but he was NOT an oncologist (desire my being told that is who would be doing the assessment). He did talk to one on the phone, however.

The whole process took 12 hours.

And the conclusion:
(I) I don't have Covid-19 (given that I had the negative test result)
(Ii) I may have a viral infection
but the conclusion is:
this is probably my cancer deteriorating.

That's right. They have been withholding chemotherapy, week after week, because I reported to them the symptoms of my cancer getting worse.

>68 -pilgrim-: .....wtf.... So much for their Hippocratic oath to help to the best of their ability. It's not just that you are faced with so much incompetence; it's the lack of real concern on their parts that makes this so inexcusable.

>68 -pilgrim-: Sending more virtual hugs

>68 -pilgrim-: I am at a loss for words as your saga of medical incompetence and lack of caring by staff continues :(

>68 -pilgrim-: I am torn between being furious or incredulous...

Your situation just gets more and more Kafkaesque. I am keeping you in my prayers.

>73 Sakerfalcon: what our dear friend is struggling with puts all my petty issues in the "not as important" box.

>74 fuzzi: Indeed. It puts everything into perspective.

>76 -pilgrim-: Happy Easter! :)

I'm back from my forum break for Passiontide. How are you doing? Is it Easter for you as well?

Happy Easter!

>77 Majel-Susan: It is a fairly confused situation here. Most Orthodox will not be celebrating Easter yet - and that is the pattern that I am most familiar with.

But the nearest parish celebrates at least some feasts according to the Gregorian calendar. Christmas was celebrated on December 25th. But I don't honestly know what they are doing regarding Easter. They are not in my "local area". (which has no Orthodox Church) and the COVID-19 legislation forbids travel between areas, so I have not been able to attend since this latest lockdown came into force. My priest said at Christmas that he wanted to phone me "soon", but I have heard nothing. I have tried to contact the parish administrator but have had no reply. So I am pretty much on my own here. I do not know how to "conform to local norms" without contact.

>79 -pilgrim-: That does sound a little confusing. Perhaps since there is no local church in your area, you could follow the tradition of some major radio or online network run by the Orthodox Church in the UK or elsewhere?

Medical post #9:
Today I had finally had the CT scan that was supposed to be "urgent" in February.

The staff were pleasant (apart from still insisting on calling me by the wrong name - if they claim to remember me from last time, should they still be getting my name wrong?)

But there are two aspects that are on my mind - one worrying, one infuriating:

(i) they had to do the scan without the contrast medium. This is not the THIRD time that I have had treatment altered or cancelled because no one can get into my veins. (See >48 -pilgrim-: and >67 -pilgrim-:.)

Even though my chemo is not IV, they require blood samples to calculate the correct dosage, so being unable to get blood is likely to have severe consequences.

(ii) whilst the radiographer was trying vainly to take my blood, I couldn't help being able to read the sheet of my details (I know they were mine, since she consulted then when checking my DoB etc.) It referred to me as a "notorious DNA'er"!

I have never missed a radiography appointment voluntarily. I was unable to attend one last year, because it was scheduled for after my chemotherapy, but, although I had been sitting on the chemo ward for over an hour waiting, the nurses did not bother to notify meet of the time of it until less than 5 minutes before - which was not sufficient time for me to be able to walk across site. The other two times I received no notification of any appointment.

It is as I suspected in >46 -pilgrim-: - their failures are being logged as MY fault.

The result of having had no chemotherapy since early January, the hospital having cancelled it for various reasons - including, in larger part, for having the symptoms of my cancer getting worse (see >68 -pilgrim-:)! - is that my pain levels are noticeably worse, and the appearance of my breast is noticeably different.

Empirically, therefore, I assume that my health has been adversely affected by this.

But in practice, it has been a blessed relief from the weekly round of insults and humiliation. Even though I have spent most of it distinctly ill, and as a result have been developing other serious issues which are driving me frantic with worry, these weeks have been so much better for the absence of NHS staff from my life.

>82 -pilgrim-: that is a truly sad commentary on those who should be helping you, not covering their ass-ets. :(

>81 -pilgrim-: their failures are being logged as MY fault.

That just reminded me of a recurring discussion in a global health course I once took, about how healthcare systems tend to lay the blame of inconsistent adherence to treatment on their patients, particularly the difference between saying that the patient was "non-compliant" vs. simply non-adherent, and also the need to look further into why the patient is unable to adhere to the prescribed treatment.

I'm sorry that things don't seem to be improving for you lately. You are still in my prayers.

My glasses' frames have broken. The arm on one side has broken off.

Upon investigation, I found that
(i) there is no representative of the chain from which I bought them in my "local area" (as defined by government guidelines). Eventually I decided that not being able to see properly does constitute "medical reasons", and went to the nearest big city.

(ii) Having found a representative of the correct chain, they then told me that my glasses'frames, which are two years old, are no longer manufactured - and so I will have to buy a complete new pair of glasses.

Since I have noticed my vision is somewhat blurrier than it used to be, I decided to have an eye test as well, rather than making the glasses up to the prescription from last year (which has changed so little from they treat before that I had not changed my distance glasses then).

(iii) I had the eye test yesterday.

Apparently my vision has deteriorated so much in the last 6 months that it was borderline legal for me to be driving!

Optician is worried about either incipient diabetes or "pre-cateracts".

And of course, this has meant yet another week without chemotherapy.

ETA: the good news is that there were no signs of the vitreous haemorrhages or optic nerve damage from the bleeds last Spring/Summer.

Oh, dear Pilgrim, what unrelieved misery. If sympathy helps at all, you have mine.

>86 Meredy: Thank you, Meredy. It actually means a lot.

>87 -pilgrim-: Sending big supportive hugs your way.

>87 -pilgrim-: I'm trying not to wallow right now, but I'm having a rough time. Yet I can read your posts and count the things you're dealing with that I don't have to worry about, and it helps me see things differently.

Not that you're the designated sufferer, the one that everyone else is better off than, but just that it's inspiring as well as affording perspective. I am full of admiration for your stamina, your endurance, and your stout heart.

And meanwhile you do keep reading, going somewhere we all can go. That takes strength and gives strength also.

I wrote a futuristic piece of fiction back in the 1970s about a device that was essentially a virtual reality machine (nonexistent then); I called it a consciofactive (C-fax). Authors created experiences for it that were multisensory experiences with a plot, a storyline, wherein the user "was" the main character. One effect of this was that everyone who'd done the same story had in a way "been" the same person. I tried to consider how this could affect human interactions, when people had actually undergone the same things, felt the same feelings, and shared the same memories, but my imagination fell short.

Still, to a degree that is what we're doing when we read books and then talk about them here. In some ways it seems like an experience of merging with Big Mind, a universal presence. (This fits with what I'm reading right now.) That temporary immersion of ego and perception in the mind of another, albeit a fictitious other, is what makes reading such a potentially deep experience--a kind of redemption, if you will.

>85 -pilgrim-: hugs from me, too.

>85 -pilgrim-: glad you were able to get glasses and there was some news.

Hugs your way 🤗🤗🤗🤗

>85 -pilgrim-: Hugs

Keeping you in my prayers as you go though all these terrible and frustrating experiences.

I got my second dose of the Astra-Zeneca vaccine today (at rather short notice).

ETA: Am currently feeling absolutely exhausted. Not sure whether that relates to the vaccine at all, or not.

Still extremely glad to have had it.

>94 -pilgrim-: Hooray for the vaccination! Hope your exhaustion is just vaccine related.

>95 NorthernStar: Update. Not only am I so tired that I am struggling to think straight, but the arm that I had the injection in is very painful - which wouldn't be so bad, except that it is my "good" arm, and so this is drastically screwing up my mobility (ETA: which relies on crutches).

Add a low grade fever, aching all over and vicious pins-and-needles. I am used to them semi-permanently due to the neurological damage, but am not sure how much of the intensification is due to the cancer/chemotherapy (which currently means that my big toes are permanently numb) and how much the reaction to the vaccine.

This is not fun (although still a doddle compared with the alternative).

But I really need my brains to be working, on order to discuss the results of the CT scan. (cf. >81 -pilgrim-:)

>96 -pilgrim-: Hope you are feeling better in time!

>96 -pilgrim-: sorry to hear about your reaction to the shot.

>97 NorthernStar:, >98 fuzzi: Thank you both.

Yes, I did make it to the oncology appointment OK. Thankfully the pins-and-needles have gone back to their normal levels. Fever has got out of the brightly-coloured images stage; am now just feeling exhausted and somewhat fuzzy-thinking.

Am still trying to get my head around the results of the consultation.

I'm making my way through threads, one by one, trying to catch up on everything that happened during my time away from the pub, and want to send you large hugs. I'm holding my thumbs for you, as always.

(I had one arm of my computer glasses go off at the joint, but the optician managed to order a replacement, despite the frame no longer being in production. That was pure luck, though.)

Anybody else feel nauseous, dizzy, with headaches and mild fever after second vaccination?

I am finding it difficult to apportion symptoms between the various possible causes. Whenever I see a medical professional, they always expect ME to tell them which condition it was that causes which result - and how the neck am I supposed to know?

>101 -pilgrim-: Yes, sounds like you are having fairly typical reaction to the 2nd shot. I had headaches and fever and general aches, my wife had the nausea. I've heard from some folks that the exhaustion didn't pass for 4 or 5 days. Hang in there, it does get better!

>102 Karlstar: Thanks, Jim. Yes, it's not fun but it's bearable. It helps to know which symptoms to ascribe to what.

Did you guys also get the blueness and tingling in fingers and toes?

>101 -pilgrim-: I've not been cleared for vaccination yet - I have to wait until I feel totally recovered - but what you describe sounds like fairly typical. My mum, for one, had no reaction at all to the first shot but after the second she had exactly the symptoms that you describe.

No blueness, though.

>104 Busifer: The blueness is the sort of thing that is problematic. I do get blue hands and feet anyway, due to poor peripheral circulation, but my perception is that it is currently much worse.

Since this can also be exacerbated by chemotherapy (which was last over 4 months ago), it is revant to know whi h condition to blame. If both the vaccine and the other factors are making my blood flow thicker and sluggish, it is potentially worrying from a thrombosis point of view, I suppose. On its own, it is trivial.

>105 -pilgrim-: No one that I know of have mentioned experiencing circulatory issues, but that is anecdotal evidence at best and so have no real value.
If I didn't know about your history I'd say "check with a doctor" but, well, you know best what to do.

It has been over a fortnight since my second AZ dose, and I still feel like >101 -pilgrim-:. Food tastes horrible and am having difficulty swallowing it at times.

How long have other reactions lasted?

I am sick of the petty dishonesty everywhere.

I had to get my phone repaired after the screen was shattered. Because there were glass shards near the edge, I did not risk taking it out of the gel case, and neither did the guy at the repair kiosk, before he wrapped it in plastic add and sent it off to his repair guy.

The price for screen replacement was £60, which is steep, but I could not walk to another shop - I hate pedestrianised areas! - and this was the repairer recommended by the shop of my mobile phone carrier.

The phone came back without the protective case. The owner eventually admitted that it must have been left at the workshop. He told me that the repair guy would next be there on Monday, so that I would have to come back for it (and claimed that he did not have a replacement of the right type in the shop to give me).

I check that it is OK for me to send my lodger to pick it up (providing he gives the receipt).

Lodger goes yesterday and finds the centre apparently shut (I say apparently, because when I rang later to find when they would be open, they said that they HAD been open all day.)

He goes again today, and is told that they have it, but he must "come back tomorrow" because "it is in the repair guy's car"!

It is perfectly possible that the engineer initially forgot to return the case. But having returned to the shop on Monday, what possible grounds can he have for keeping my property and taking it away with him again?

It is obvious attempt to wear me out, until the cumulative cost of sending someone for the pickup becomes greater than that of replacing the case.

We seem to live in a society now where people expect to get away with petty theft, knowing that the value of the items is too low for the police to be interested.

>108 -pilgrim-: honesty seems to be out of style. 😢

>109 fuzzi: I think that is true. I remember the book that I reviewed last year, where the middle-class author Lionel Shriver appeared to be implying that theft from strangers was a perfectly normal response to frustration with one's life, the tone being that it was in fact admirable, because of its audacity and ingenuity.

It is a theme that I see a lot in fiction, so I suppose it is not surprising that it bleeds over into real life.

>108 -pilgrim-: That is so petty! Feels like dishonesty just for the sake of it :(
Of course the normal thing would be for the phone to get returned, complete with case.
When things like this happens I always make the effort to put the word out. In fact, I initially got my Tripadvisor account because I needed to tell the world what a lousy experience I'd had at a certain hotel.

So, I had to make the longest journey that I have been able to for a while...stopped of to take these pictures on the way back:



I then turned through about 90°...



Just a little demonstration of the changeability of British weather.

>112 -pilgrim-: I wish I could paint...

>112 -pilgrim-: What a pretty place.

>112 -pilgrim-: Where is that?

>112 -pilgrim-: Even the overcast view looks peaceful.

>112 -pilgrim-: Could describe Swedish weather as well ;-)
We had 7 deg C and rain this morning, with 25 and clear skies by noon.

I realise that this might sound strange for anyone actually living on the British isles but we often watch British shows just for the views. Not even Norway can fit as many sheep in such a small space ;-)
May I suggest S-space? Pratchett's L-space, but for sheep!

Currently watching "The Pembrokeshire Murders" and even that one offers some views, despite the lack of sheep.
When we (not the Royal we; me and my husband) were at the worst point of covid, back in April, we found "Penelope Keith's Hidden Villages" on Swedish public service TV. Just the fluff we needed, in our feverish state.

>113 fuzzi: That is how I feel at times like that.

>115 hfglen: East coast, view out over the North Sea.

>116 Narilka: Both photos were taken within seconds of each other .

(Tried to reply earlier, but could not get it to post.)

>117 Busifer: Sheep - the Secret Masters of the Universe.

(Well, according to Steve Jackson's Illuminati: the Card Game, at any rate.)
Evidence: sheep perched on crags, in positions that they could not possibly have climbed to.

And yes, there is nothing like about 50 lambs, all wanting mother's milk NOW, to wake you up in the morning, even if they are a mile or so away.

Have you ever watched sheep dog trials? They used to be televised on BBC2. Coming home after school to watch them was a strangely addicting phenomenon. Very soothing somehow.

>117 Busifer: I have been rewatching Midsomer Murder for the landscaping around the yards and estates. So pretty.

>119 -pilgrim-: Actually, no, not unless you count what can be glimpsed in various pieces of British television, though a now retired colleague used to compete with his dogs. A very small niche sport in Sweden, I've never met anyone else who took it so seriously.

>120 MrsLee: I almost mentioned Midsumer Murder. At some point watching Hidden villages, back in April, I exclaimed "that shop was in the Midsumer episode last night!".
(We also watch The Antiques Roadshow, for multiple reasons, but one of them is the houses and the gardens. There's a Swedish version, going on 40 years now, and I think the British one is better for telling stories, and for the settings. The Swedish version is too focussed on value, money.)

>121 Busifer: I wonder if the language of commands is the same in Sweden as in Britain?

I am being more communicative than has been usual recently because the result of my necessary (but ultimately fruitless) expedition last week is that my back has given out. I am currently horizontal, and need assistance to get to standing.

This is not a comfortable state given current situation, so any remedy suggestions would be welcome.

(I did call a GP, and have been told that they will get back to me some time next week.)

>123 -pilgrim-: Unfortunately the only remedy I've found for that back problem is rest.

If you have a heating pad that might help. And rest, as >124 Karlstar: said. Best of luck!

>123 -pilgrim-: I rest, use a heating pad, SalonPas, and take multiple gentle walks (only about forty feet to begin with if it's a bad episode). Wishing you a quick recovery.

>123 -pilgrim-: okay...I will offer some suggestions based upon my personal experiences and working for chiropractors for almost 12 years...

Not sure what you mean by your "back is out", you mean muscular? If so, lying flat for long periods of time may not necessarily be the best thing. Use heat on the area, no more than 10 minutes at a time, then switch to ice for 10 minutes, or just let your back cool down to normal temperature. Keeping the heat on for long periods of time may worsen the ailment, can damage you. Alternating heat and ice is beneficial, but start and end with ice.

If you lie flat, bend your knees so that your feet are flat on the bed. This takes stress off the back. Pillows under your bent knees can help, too.

Use support while sitting, pillows, whatever takes stress off the back. Get up, walk around carefully, and G.E.N.T.L.Y. Stretch/bend very slowly, so that the muscles don't seize up. If it is cool around the house, put on a shirt or sweater to keep the muscles warmer. Cool air can cause them to tighten up into worse spasms.

If your back issues have to do with a disk, I think resting flat on your back with a pillow under your bent knees is advised.

>122 -pilgrim-: they use whistles, too, maybe they're universal?

>128 fuzzi: It would be interesting to know if the whistle commands are standard internationally.

It seems that commands in Welsh are also used by some herders here, so it is less likely that the verbal commands are universal.

>124 Karlstar:, >125 clamairy:, >126 Taphophile13:, >127 fuzzi:
Thank you all for your suggestions. I am experimenting.

I don't know what I would do without books.

I discovered recently that standard painkillers and opioids are both supposed to be harmful to my condition. Since I feel very little benefit from either, I am trying to stay away from them.

The GP does not want to prescribe the tablets that the palliative care consultant wanted me to take.

But if I can distract myself with a book, I can manage.

>131 -pilgrim-: This is what books are for! I always distract myself when I'm feeling ill with books. I hope you are feeling better.

>131 -pilgrim-: in my recent situation the shiny new books don't distract me enough. Last night I couldn't find anything that I wanted to read or reread, and decided to reread Christmas Horse. I got lost at the Tack ranch for a couple hours!

>133 fuzzi: The trouble with shiny new books is that they have the potential for unpleasant as well as pleasant surprises.

Getting access to a crate of my childhood books has been a pleasant surprise, although the proportion that have been damaged by mildew is depressing. I have even found some that I had thought my parents had thrown out.

You can detect my pain levels by what I am reading:
10. No reading - cannot think at all.
8. Children's books - am struggling to concentrate, but really need distraction.
6. A large number of light books - not actually a good sign, it means reading books is all I am currently capable of.
5.. Large books with depth - pain or stress nagging so that I cannot sleep; need something that I can really get involved in to distract me.
3. Very few books, probably non-fiction - I am at my most functional, so only reading a little to wind down at the end of the day.

Book reviews tend to get written when
(I) I have no decent Internet connection,
(II) am not mobile, or
(III) am trying to check my brain is functioning coherently before writing something else!
(

>133 fuzzi: Have you ever read the "Pocomoto" books by Rex Dixon?

Having found one - Pocomoto - Pony Express Rider - that I remember reading from when I was very little, I was amazed to discover he was actually a British author.

I am astonished how appallingly badly some American writers do their research before setting a book ostensibly in the UK; now I am curious as to whether 'Pocomoto' is similarly cringe-inducing for an American reader?

>135 -pilgrim-: never heard of it, sorry.

I dislike poorly-researched books, love stories that "ring true", sound authentic.

>135 -pilgrim-: I can't think of any examples I've read of British writers placing a story in America. Possibly because I only pay attention if I adore the writing? However, when I watch the British mysteries and they have an "American" in them, I almost always cringe at the way they talk. It would be funny if I looked it up and the actor playing the part was actually American. :)

>122 -pilgrim-: I think so (commands, sheep dogs): after all every aspect of the sport is directly imported from the UK, and most of it is whistles, is it not?
And another import, epee/fencing, uses all French: when we import something we tend to go all in. To the great chagrin of those trying to keep the Swedish language "clean".

>123 -pilgrim-: Oh no. And a week for a doctor to look at something that should be treated as an emergency?! Anyway, I find that I think >127 fuzzi: has good advice: if it's muscular movement is important, even if only a little. The muscle needs to get oxygenated, and keeping still will work counter to that, as do the cold/heat regime.
Though if it's something in the bones rest would probably be good. Which is why a doctor or physiotherapist should have a look...

>134 -pilgrim-: Not being anywhere close to your situation, but when I feel ill enough not to read I watch TV or bring out the dvd collection. The more TV I watch, the worse off I am.

I hope you start to feel better, soon.

>137 MrsLee: I can sympathise; some of the "American" accents are so bad even I can detect the problem! Also, I have been trying to listen to an audiobook version of Shibumi, but the voicing of the American agent is such a cliché that it is painful to listen to!

My reaction to most "British" characters on American TV is very similar. The standard version sounds like nothing heard anywhere on earth, and on the occasions when it vaguely resembles a British accent, it is usually once that contradicts the social and regional backstory of the character!

It is nearly as bad as the Hollywood idea of a Russian accent. One would have thought that nowadays it should be possible to cast actors who actually speak the required accent!

I have no idea whether the Pocomoto stories are authentic or not. As a child I assumed that they were. I was hoping someone who reads Westerns regularly would be able to tell me whether they were.

>139 -pilgrim-: I find it amusing that Hollywood often cast Scandinavian actors as "Russians". They seem to think that a Scandinavian accent is close to a Russian one. No true.

And I think outside of the UK a lot of people have close to no idea on the link between social class and accent in British English. This link is much stronger in the UK than the similar link in Sweden: it does exist, but have limited impact (except if you speak one of the creoles, ie the very distinct languages that have developed in a number of suburbs).
Here accent is more of a regional thing.

(I think it funny that apparently in the Star Wars universe everyone in the Empire is being put through British English class, while everyone else speaks some kind of American English. A long time ago, in another galaxy, British English survived. The sun never sets on the Empire?! ;-) )

>140 Busifer: It gives The Empire Strikes Back a whole new level of meaning!

The only thing more painful thing to listen to than an American attempt at a Russian accent is a Russian attempt a British one. And they seem to agree with the Americans that "British accent" is how you spot the "bad guy".

Regional variation is quite marked in the UK also. But the full versions rarely appear on TV, as they are often incomprehensible to folk from other parts of the British Isles. Most people nowadays can standardise their English for wider consumption.

>141 -pilgrim-: Definitely true on the regional thing in the UK. Some dialects are more or less incomprehensible to the outsider, but that's true of Sweden as well. The class aspect I feel to be more of a distinct thing that many misses.

>141 -pilgrim-: Now I'm curious to hear a Russian attempt at a British accent. Can you think of an example off hand from a movie or tv? Maybe it will be available on YouTube.

>143 Narilka: John Cleese spoke Russian in a hilarious bit in A Fish Named Wanda. Does that count?

>141 -pilgrim-: >143 Narilka: Wasn't it some of that in The Hunt for Red October? Both British and US actors. And a Swede. And at least a few lines in Russian.

>143 Narilka: Detective Anna (Анна - Детективъ) is a Russian TV series that available on YouTube (with or without subtitles). There is a character in that called Gordon Brown, who is a particularly hilarious example. His Russian is meant to be imperfect (when he first arrives, there are deliberate grammatical mistakes), but the character holds conversations in both English and Russian, so that is a good example. The series' first season is 53 episodes long, so you should need to try around episode 50 to be sure of him appearing. (There is an episode much earlier with a little English girl, but (a) I feel it unfair to criticize a child actress, and (b) it's probably the most disturbing episode in the series, and not a good place to jump in.)

Two Legends (Две Легенды), a Russian TV series sometimes available on Amazon Prime, has an episode with an Islamic terrorist, who delivers his threats in an English that is attempting to be British. Since this is a spy comedy, quite a lot of the antagonists speak in English (even when the characters are German!)

The only example that I can immediately think of, where it may be American English that is intended is the dystopian film Novaya Zemlya (Новая Земля). There are initially some American convicts on the island as well, but they are voiced by American actors. It is the denouement, when a UN-type force arrives that features Russian actors playing characters who are supposed to be speaking English natively. (N. B. The title for English releases of this film is Terra Nova, but I think they are both dubbed and recut, with most of the character backstories removed).

>145 Busifer: For truly execrable examples of Americans attempting to speak Russian, it is Stephen Amell in Arrow that I always think of. David Nykl's Russian (as Anatoly Knyazov) is better, but still accented (a Czech accent, maybe?)

But I thought Narilka was asking for Russian actors playing characters whose native language is supposed to be English.

>147 -pilgrim-: Oh, I might have read too fast and put too much of my own interpretation in the gaps ;-)
My wrong.

>148 Busifer: Do you have any examples of Russian actors playing non-Russian characters to contribute?

>146 -pilgrim-: I have some homework for the weekend now :) Thanks!

>136 fuzzi:

I happened to mention Pocomoto - Pony Express Rider to a Finnish friend - and the resulted was enthusiastic cries of recognition!! Apparently the Pocomoto stories have been translated into Finnish and were a staple of a Finnish childhood.

I really must reread it now...

>146 -pilgrim-: got me reminiscing -



Novaya Zemlya (2008, Russian)
Dir.: Aleksandr Melnik
Starring: Konstantin Levrenko

This is a film set in the near future of 2013 (!).

A little context is necessary. Imprisonment as punishment for a crime, is a relatively new concept in Russia. As late as the 1990s, only around 10% of Russian convicts were in prison. The usual sentence was to a corrective labour colony (although a lot of English language texts obscure this fact by translating both тюрьма and лагерь as "prison"). And sentences to the camps were typically short (5-10 years), with 12 years the standard sentence for murder - although for much of the century, surviving your sentence provided a serious challenge. Seriously dangerously people (murder with exceptional cruelty, of pregnant women or police, as part of a criminal enterprise etc.) were executed.

The idea of imprisoning someone for the rest of their life was considered abhorrent. When Russia abolished the death penalty, one survey found that a third of Russians opposed this; many not of the grounds that this was too lenient, but because they felt it inhumanly cruel. Convicts whose sentences had been commuted to life imprisonment were writing letters to regional governors, begging for their original sentence to be carried out.

So the problem of what to do with larger numbers of people, who were too dangerous to be released back into society, or to work alongside ordinary people, was a new and real problem, at the time at which the book, on which this film is based, was written.

The solution proposed is to allow those with life sentences to opt to spend them on the Russian island of Novaya Zemlya, in the far north. They will be provided with food and tools, and basic recreation - inflatable sex-toy dolls - yes really! (But since this is a Russian film, all we see of them is a box being unpacked.). But there will be no guards, no rules, etc. There is simply a monitor buoy, which they can row out to, to contact the official authorities, if there is a problem.

Surprisingly, this is an international venture: so there are American convicts there too. A large component of the Russian contingent are Chechen - both politicals and professional criminals. So we have a Russian/English language barrier and Russian/Chechen racial hatred (the Chechen wars were only 10 years earlier when this was made). What could possibly go wrong?! Unless, of course, the powers that be intend them to eliminate each other and solve the problem of their existence.

But "Novaya Zemlya" literally means "New Land" or "New Earth". So this is also a meditation on what humanity would do if given a fresh start, without external interference.

This second theme is brought out by the meditations of our hero's cellmate, and fellow volunteer, the serial killer, Sipa. He is someone who kills for pleasure. But he does not believe he is bound for Hell, because he believes that Hell is likewise filling up...IIRC he is thus being as evil as possible in the hope that he will be appointed a demon and allowed into Hell.

Unfortunately the English language version, Terra Nova is heavily cut, removing a lot of the convicts' back stories and discussions of hopes and motivations, to market it as a sort of Russian Battle Royale. (I have watched both versions.) Fortunately the special effects budget means that this is not a gory film, whereas I have never wanted to attempt Battle Royale.



The screenplay was writtten by the author of the book, Arif Aliyev. I would like to find an English translation, as I have heard that it differs yet again.

Another expansion on >146 -pilgrim-::



Two Legends (Две Легенды) (2014, Russian)
Dirs.: Vyacheslav Kirillov & Denis Karyshev
Screenplay: Denis Karyshev & Dmitry Abezyaev

This is a spy comedy along the lines of Get Smart! or The Man from U.N.C.L.E. TV series, but with less emphasis on gadgets and more emphasis on "cool" martial arts.

It is the old staple of two agents with completely opposite personalities being teamed up by their superiors.

He is an academic from an elite family, who has studied martial arts and wants to be more than a backroom boy.

She grew up in an orphanage, has street criminal skills, and is perfectly capable of seducing her way through any mission.

The cover story (legend) for both of them is that they are schoolteachers. Because of the rush placement, the schools are not ideal. He is placed in a tough state school - the sort where the headmaster is immensely grateful that anyone would take the job - whilst she is teaching in a posh private girls' school. How they cope with their classes, and excuse themselves for missions, is the source of much of the humour.

Unfortunately the actors are not as good at martial arts as their characters, so the filming of fight scenes tends to be wea, and rely on shaky camera work (The subtitles were also bad on first release.)

That's it. It has no depth, but also no gore, no wallowing in atrocity, no underlying "message". The humour is not as slapstick as American comedies, and it is not as relentless, but it kept the tone light. This is "old school": dastardly villains helpfully monologue, our heroes are cool and competent. (The heroine reminds me of a female Napoleon Solo.)

I recommend particularly for anyone with nostalgia for sixties style TV (although this was set in contemporary Russia) and a fictional world where the good guys always win.

The only slight problem is that the final episode contains set up for a second season that was never made. Most episodes are pretty self- contained however, so this is not much of an issue.

Here endeth the bout of -pilgrim-'s happy reminiscences.

>149 -pilgrim-: Off the top of my mind only Anton Yelchin, as I'm not sure Milla Jovovich's characther Leeloo in Fifth Element can be ascribed to any nationality, at all. And I don't know much about her career outside of that. But I'm sure there has to be some more.

Perhaps most here remember Yelchin for portraying Chekov in the Trek reboot, but in Only Lovers Left Alive (one of my favourite movies) he portrayed Ian, a guy who provided Adam (who, unbeknownst to Ian, was/is a vampire) with vintage instruments and more during Adam's Detroit sojourn.

>154 Busifer: Since Yelchin moved to the States as a baby, I don't think he really counts here. Even if he kept Russian citizenship, his first language is likely to be American English.

Milla Jovovich emigrated at the age of 5 from the Soviet Union. Not sure what she would count as her first language.

Both are listed as American actors, which seems to me a fairly good hint as to what they considered their native language to be.

Most Russian emigrés are aware that their Russian now sounds distinct from that spoken in the Motherland, even if they have remained fluent. (Peter Pomerantsev talks of having to relearn the language when he went back to work in Moscow.)

By "Russian actors", I really meant actors whose native language is Russian.

P. S. I have not seen the film that you describe (although you are tempting me to!) I remember Anton Yelchin from Odd Thomas

>154 Busifer: >155 -pilgrim-: I really enjoyed Only Lovers Left Alive. Some incredible acting all around in that film.

>156 ScoLgo: Duly noted :)

>156 ScoLgo: Yes. Awesome all around, I think. Also fantastic photo and sound. Definitely Jarmusch's best.

>155 -pilgrim-: I wasn't aware of when either of them moved to the US, I just counted them as "born in 'Russia'". If anything this is not my area of expertise, at all ;-)

>158 Busifer: You are one of the few other people here who post occasionally about non - Hollywood film.

And your recommendations tend to be interesting.

>159 -pilgrim-: Thank you. Apart from the superhero or sf/f stuff that has managed to enter into the mainstream thanks to Hollywood I'm not that much into the traditional Hollywood fare.

>160 Busifer: You may have noticed that my tastes are similar.

Further to >108 -pilgrim-:, >109 fuzzi:, >110 -pilgrim-::

I am typing this on the phone with the expensive replacement screen. The one that repair shop, which was recommended by the assistant manager of my mobile phone contract supplier, was so reluctant to part company with my phone case.

You know how your phone goes black and requires you to re-enter your passcode to access it, when you leave it unattended too long?

Ever since I got back, my phone has been doing that randomly, not only during calls, but even when I am in the middle of typing a sentence.

I have checked all settings, in case any timer delays had been reduced to a ridiculous setting, but I can't find anything wrong.

This afternoon all the icons on my screen started jumping up and down in unison, by about 3mm. This went on for around a minute.

That is apparently a symptom of a failing screen.

It seems that my expensive new screen is not new at all, and that my smashed screen has been replaced with a second hand, faulty one.

Of course, I can't go back a demand a proper screen, as I cannot afford to be without my phone for weeks AGAIN.

And the shop owner knows it.

It seems that to some people disability=opportunity.
They see someone approach on crutches and think, "Aha! She won't be able to get back here to complain easily, and probably can't risk being parted from her phone on case she misses important medical communication - we can rip her of as much as we like."

My phone has blacked out twice in the time it takes to type this, to give some idea of my frustration level.
ETA: And twice while listening to a YouTube music video.

I think I am really going to go cuckoo here.

>162 -pilgrim-: I'm sorry. Some people suck.

>163 fuzzi: Since I did not want to be stuck without communications again, I also took an old phone, which has poor speaker reception to a different repair shop.

Since it has apps randomly opening, I suspected a virus, although I am usually very careful.

Three weeks later, I got that phone back. They assured me that all the phone had needed was a software update.

I opened the phone in the shop. It showed the same symptoms as before.

They then decided that it was a problem with the screen -and the charge for replacing that was £40 less than the price of the phone.

So, after all this time, I STILL do not have a properly working phone!

>164 -pilgrim-: I repeat what I said in >163 fuzzi:...

>162 -pilgrim-: >164 -pilgrim-: What fuzzi said :(

In >96 -pilgrim-: I referred to having an appointment regarding the results of my CT scan. As I mentioned, I was not feeling entirely 100% at the time, post-vaccination.

Thinking back over it, there was a lot in that consultation that does not make sense to me.

Apparently, the CT scan was "good news" because "your radiotherapy has been much more effective than we expected, and the CT scan showed that it is now less than 0.5 cm across.

When I pointed out that the lump that I can feel with my fingers is now about 3cm across, my oncologist explained that that is scar tissue, not tumour.

When I said that the pain level in both breast and underarm has increased significantly over the past 6 months (in which I was denied treatment as per >68 -pilgrim-:), she said that was a common effect of the healing process.

She also stated that the difficulty breathing, coughing etc. WERE due to a virus (even though the medical immunologists stars that they were not).

She said that I had "a slow growing, non-aggressive tumour" and that there was no urgency in resuming chemotherapy.

However, given that the metastases in the lymph nodes were still visible she did agreed to refer me back to the radiologist, at my request, to see if anything could be done with radiotherapy about those (since I appear to tolerate that with minimal side effects).

When she said that the radiotherapy (which I received last October) had been abnormally effective, I asked whether she thought that my having EDS might explain this. (Since EDS adversely affects my ability to heal, I was wondering whether it might similarly effect the ability of the cancer cells to recover from irradiation.) She replied that she had "no idea", as she "knew nothing about EDS".)

Since , when I first consulted her in February 2020, she said that she was going to consult with a colleague about what effect my EDS might have on his I responded to the various cancer treatment options, her reply seems bizarre.
Did she mean
a) she had been unable to understand what her colleague told her? Surely in that case she should have sought clarification?
b) she has forgotten the information that she obtained about a year ago, and not been taking it into account?
c) Or was this just another one of those "let's lie to the patient do she will agree to what I want", and she never consulted her colleague at all??

Other questions that I wished that I thought to ask:

1. The results of the radiotherapy that I had in autumn is hardly news. We covered that last winter. Why is she using the latest scan to extol the effects of last year's radiotherapy, which we both already know, rather than comparing this CT scan with last November's, and discussing the effect of the treatment hiatus?

2. If the results of the CT scan are so good, why did she phone me a week afterwards, telling me that I urgently needed to resume treatment? What can have changed in the intervening fortnight?

3. I can understand that the radiotherapy can cause the formation of hard scar tissue, but why is that still being created, at a noticeable rate, 6 months after the treatment?

4. Similarly, why is the pain worse NOW? Surely the healing process is more active immediately after the treatment, so that one would expect any pain from it to be worse then?

5. I can understand how radiotherapy can kill off a significant number of cancerous cells, and thus reduce the SIZE of the tumour, but by what mechanism does it change the TYPE of the cancer cells that are left?

I was told in 2019 that I had a "fast-growing, extremely aggressive triple-negative cancer", as exemplified that between April and August that year, it grew from being 5mm in diameter to having metastasised to lungs and lymph glands, visibly about 2 inches in diameter, and inoperable.

I was having a very bad time with the IV chemo, plus so little result that they were talking in terms of continuing with that treatment indefinitely with no hope of halt or even a break.

The rate of growth, despite treatment, was being monitored by CT scans.

How does radiotherapy (+ 6 months without treatment) change the TYPE of tumour to "non-aggressive"? Surely whatever tumour cells remain are of the same type as before?

I wished I had thought to ask this at the time.

Two weeks ago, I received an appointment (at 1 day's notice) with the radiologist.

They were running 1.5 hours'late. Thus, although I had been invited for an appointment with the radiology consultant to "discuss whether further radiotherapy might be possible", in fact they just did another close scan, complete with body markings.

The doctor asked if I had any questions, so I tried to ask the ones in the previous post, about how the radiotherapy changes the nature of the tumour, and why the scar tissue and the pain are growing so much more now than they did in the early months after the treatment, but I couldn't get an answer.

The only explanation I did get was that the skin looking as if it has burn scars now, rather than in the months after the radiotherapy, is a perfectly normal event.

She asked "you haven't had your surgery yet?", which is an odd question, since I obviously can't have surgery. Rather than remind her of the full set of counterindications, I simply points to the crutches and said "I can't have surgery".

If the results of the latest CT scan are so good, why is she raising the spectre of a procedure that she knows will leave me in constant, extreme pain?

And why were the radiographers so sympathetic, telling me how sorry they were that "you have had to come back", for an optional procedure that the oncologist didn't offer, but I had to suggest?

After the CT scan, instead of the discussion that I was supposed to have, the radiologist said that she thought it would be better over the phone on Monday, after she had had a chance to talk to her colleagues.

I did not receive that call. Nor did I hear anything on Tuesday. On Wednesday, I phoned in. They said the radiology consultant would phone me back, but instead it was a nurse, who could not answer any questions, but told me that my treatment would start this Wednesday, after a third CT scan, and that the radiologist would talk to me then, but that they wanted to get started immediately afterward.

Today I got a letter detailing my appointments for a daily treatment programme.

I thought that treatment programmes are supposed to be drawn up in consultation with the patient?

And that a patient has to give written consent?

Instead the doctor repeatedly fails to keep appointments to discuss treatment, won't answer questions, then simply instructs me to attend a sequence of treatments, without any explanation whatsoever.

I feel a little uncomfortable describing what is going on in such detail, and I realise that sone people might feel it inappropriate.

But I am also aware that there are people reading this that have experience of cancer. I can't get any answers from the professionals who are supposed to talk to me about this. (Nor from the cancer sufferers support centre, who I hope might be able to help with explanations - they simply said "your doctor will explain".) I am hoping there is someone reading this who can answer those questions for me.

I'm sorry that your cancer and especially the healthcare staff persist in giving you a such rough time. As to:

>167 -pilgrim-: 5. I can understand how radiotherapy can kill off a significant number of cancerous cells, and thus reduce the SIZE of the tumour, but by what mechanism does it change the TYPE of the cancer cells that are left?... How does radiotherapy (+ 6 months without treatment) change the TYPE of tumour to "non-aggressive"? Surely whatever tumour cells remain are of the same type as before?

The tumor cells are of the same type as before, as you say. However, effective radiotherapy can slow their growth by the same mechanism, by which they kill tumor cells, that is, damage to the DNA of these cells. And as aggressiveness is determined by the rate of growth, it can become "non-aggressive" if its growth has sufficiently slowed or ceased.

The unfortunate part is that radiotherapy itself does not distinguish between the cancer cells and your healthy cells, which is why the radiation beam, its strength and dose must be carefully adjusted to target the location of the cancer as closely as possible.

Perhaps, if you would like to read more about how radiotherapy works, this site here has some more information, as well: https://www.cancer.gov/about-cancer/treatment/types/radiation-therapy

Unfortunately, I can't be of more help, but you continue to be in my prayers.

>170 Majel-Susan: No it is helpful to know that cancer cells can be modified as well as destroyed.

Yes, I know that the radiotherapy cannot be repeated; that is what I thought the consultation was to be about a fortnight ago - whether they could get an angle past their previous work, into the lymph nodes.

I wish there was more information about. That website talks about the range of how badly one might be affected during and after treatment, but nothing about the side-effects getting much worse 6 months later.

Your prayers are very much appreciated.

>171 -pilgrim-: the side-effects getting much worse 6 months later

Ah, that reminds me...

>167 -pilgrim-: 3. I can understand that the radiotherapy can cause the formation of hard scar tissue, but why is that still being created, at a noticeable rate, 6 months after the treatment?

4. Similarly, why is the pain worse NOW? Surely the healing process is more active immediately after the treatment, so that one would expect any pain from it to be worse then?

There could be any number of reasons for these two points, but if we are talking about long-term side effects, these can appear months to years after radiotherapy and include connective tissue fibrosis, neuropathic pain, and others. (There is this article that discusses some side effects of radiotherapy, both short- and long-term.) And in another article: "Late side effects are in general chronic and often progressive, leading to a reduction in patients’ quality of life following treatment."

I'm not saying that this is what is happening, but it is something to know about as well.

>172 Majel-Susan: THANK YOU!!

Those are just the sort of discussions, about mechanisms etc., that I need.

I am a physicist, not a biologist, so I want to understand how things work, but don't always have the right background.

>173 -pilgrim-: I'm always happy to help, if I can, so you're welcome! :)

I did manage to speak to the radiologist, immediately before the treatment started.

Her explanation of the switch to daily treatment was that because the response to the last programme of radiotherapy had been more effective than expected, but the presumed scar tissue mass is also very large, they wanted to be extremely careful in targeting, so as not to adversely effect the areas damaged by the previous radiotherapy, and also do a little at a time, to allies to stop of there are any ill effects.

She thinks the "burns aftermath" appearance of the skin - which only manifested in the past few months (not during or immediately after the radiotherapy last October) - is due to the treatment, but the increase in pain is due to the cancer.

The daily approach for make sense in those circumstances, but I feel it would have been elementary courtesy to have discussed it with me first.

Also her tone, and those of the nurses, is very far from the cheerful "good news, your treatment is not so urgent now", from the oncologist, who only initiated this second radiotherapy treatment at my request.

She is quite clear that the pain and problems that I am having with my right arm are due to the cancer.

Checking in, wish I could offer more than good wishes and prayer.

I expected by now to be in the middle of my radiotherapy. It is exhausting, as the travelling ramps up my pain levels, which prevents my sleeping, which prevents the levels resetting overnight. And, of course, repeated overuse, means that more damage is being done, which will take a long time to heal (if it ever does).

I had been worried before starting this about whether I could cope with multiple days at a time, but at least yesterday was scheduled as a break. (Although the pain by the weekend was sufficient that I didn't get much sleep then either.) So I was horrified to be told on Tuesday by the radiotherapist that a session had now been scheduled for yesterday. I queried this, since doing this much damage would prevent my moving afterwards (apart from being excruciatingly painful), and would take a couple of months, at least, to get me back to anywhere near where I was on Tuesday.

But she interrupted repeatedly to say that she knew about all that, and it was still more important to attend yesterday, even at that price. I asked what, and she said "well, your treatment will be over sooner".

I personally do not see much advantage in that, given that it is going to be hell to get through the next weeks.

But it is not the first time that the radiologist has changed my treatment plan without bothering to consult me, so I complied.

It is humiliating enough to be in so much pain that one is crying with every step. So why is it remotely OK to demand this, but NOT brief the radiotherapists treating me on Wednesday, so that they insult me by saying "Don't worry, there is nothing to be scared about".

How dare they insult me by jumping to the conclusion that I have suddenly, after once completed season of treatment plus 5 sessions of my second, I am so pathetically irrational as to have suddenly developed some sort of phobia about the apparatus?!

It is bad enough to be expected to put oneself through that level of pain, without being thus mocked about it as well.

Since yesterday's appointment was somewhat earlier, and they were not hustling me out, I asked for an explanation as to why it was so much better to attend that session, at the cost of further disabling my activity, rather than the original schedule.

It had not seemed logical to me, but having failed to get anything reasonable out of the girl yesterday, I thought these two ought to be able to answer. They said they could not tell me anything.

They said that I would have to contact the consultant.

Furthermore, they had not been notified about the change in treatment plan - they were expecting it to continue as before, with this simply as an ADDITIONAL session.

I am fed up with the off-handedness of this hospital.

The consultant makes changes that have significant long-term effects, and not only has she not deigned to notify me about them herself, she has not even notified the radiotherapists who are going to have to deal with the consequences - they confirmed that the radiotherapist who hold me yesterday that she knew all about it has not bothered to put anything about it in the notes left for them.

This level of casual carelessness is appalling.

I am bouncing off the walls with pain at the moment. My tolerance for that attitude is currently very low.

And the fact that the radiotherapists assume that because they were not notified, "there must have been some misunderstanding" just adds insult to injury.

I sincerely doubt that anyone who I have spent the time going through the consequences of the treatment plan change, and asking carefully whether she is sure that it IS worth causing them in order to attend on Wednesday, and who has repeated over and over again, to the extent of interrupting rather insultingly (pardon me for having the temerity for wanting to be sure that what she was telling me was correct, given its implications!) to assure me that she knew all that, I had still got to attend, is going to have "misunderstood" anything. And I certainly was not going to take a change with such drastic costs casually, without triple-checking.

But of course, something carefully triple-checked must be a "misunderstanding", because they don't want to admit that they are not properly informed.

I am really, really sick, of this casual, "we don't know what's going on, so let's start by insulting the patient attitude".

The final straw was when I was hobbling to the exit, and not able to move fast enough for their electric door not to clout me on the backside, they refer to it patronisingly as me being "unsteady on my feet" and "stumbling". Because of course, everyone should be able to withstand the pressure of a door being hydraulically thumped into one's side, and it is the patient's fault that being whacked hard has an effect. (My mobility is stable, providing I halt when I detect a joint is not supporting my weight. I don't need long, but apparently nobody who visits a hospital ought to bed to do that.)

I doubt THEY could withstand it, but that's not the point. To me, the sensible solution, in a HOSPITAL, is to have electric doors that detect when someone is in front of them. But no, they instead demand that patients either move at a given speed or can withstand being hit. As the porter explained, most automatic doors are set to detect a person and stop. But it is known that these one's don't. And not being able to withstand being hit by them is my incompetence, not their fault.

I really do not understand these doctors.

I find it hard to understand how 3+3 sessions works so much better than 3+2+2+2+2+2+2 sessions that it is worth putting me through months of hell to achieve it.

And I find it extremely discourteous to change my treatment to that by notifying just ONE of the people who are going to administer it - without even discussing it with me.

I know that my remaining life is limited. Why do they assume that stretching it out a little longer is worth making the time that is left less bearable?

I am left wondering what their goals actually are.

It does not seem to be anything to do with minimising my suffering. The only target that is in evidence is getting a number through their system with the minimum of inconvenience to themselves.

I am seriously wondering whether MY welfare is best served by opting out altogether.

The phone mentioned in >162 -pilgrim-: has now given up completely (again).

I have been typing today on my lodger's phone.

I wanted to thank you all for keeping me company over the past two years. I don't think I could have made it this far without you.

You are a great bunch.

{{{hugs}}}, and I'm sorry that I can't be of more help :(

>180 -pilgrim-: Oh Pilgrim! We are praying for you....

>180 -pilgrim-: sending virtual hugs. I wish you had an advocate to help you through this.

>180 -pilgrim-: I wish I could be there to stand up for you, I hate BULLIES, and those people who are working in healthcare at this hospital obviously are BULLIES. They have no compassion, no kindness, and no outstanding personality traits that would indicate that they should be in a patient care career.

They should be cleaning out sewers.

>183 NorthernStar: I second this - it would be great if you had a care advocate or maybe a pain management specialist on your side.

i wish for better days for you...

Catching up on threads. Keeping you in my thoughts as always. The level of callous disregard for your welfare you've experienced is mind boggling. Like fuzzi I wish I lived closer and could help advocate for you.

>183 NorthernStar: I was going to ask why you thought a lawyer would be appropriate, when I saw Darth-Heather's post.

What is a "care advocate"? It seems to imply that the hospital staff would listen preferentially to anybody but the patient! That puzzles me as a concept. I have the legal right to be involved in choices over my treatment; they pay little attention to that, but I do not understand why encouraging them to try to sideline me is thought a productive step.

>185 Darth-Heather: When I moved into this area, my oncologist agreed that referral to a local pain management specialist was a priority. Unfortunately it has been over a year and I still have not yet received my appointment.

When I have seen such specialists in the past, the waiting time has been around 6 months. However, when Covid-19 first hit, or government ordered the cancellation of all "non-urgent" medical appointments, to clear the hospital beds and staff to deal with the anticipated flood of virus cases, and to minimise the likelihood of the virus being brought to hospitals by outpatients. I presume that they are still working through the backlog.

I did see the palliative care consultant last year and again in January (see >15 -pilgrim-: etc.). But since, as he stated openly, he has never had a patient with my underlying condition, and knows nothing about is treatment - and the problem is that the cancer treatments are exacerbating that - all he could suggest was increasing the painkillers that I was taking.

And, as stated earlier, that backfired on me. He insisted on my TAKING the doses that he proposed, despite my GP being adamant that she would not raise her prescription level above the MINIMUM recommended dose (which he was quite clear could not be expected to have any effect, and was the reason that he was overriding her instructions). I implied with his instructions, with the result that my GP has now stopped prescribing ANY pain relief (or indeed any of the other medications that the specialists put me on).

Of course that has caused a major deterioration in both my physical function and a totally unnecessary level of pain - but that's what comes of following medical instructions! If I didn't comply with his instructions, he made it clear that there was "nothing he could do for me"; and since the GP refuses to permit me to, that was, naturally, the end of that. He insisted that the GP would "undoubtedly" comply one he had written to her...

In other news, yesterday - since I am still barely mobile but could think a little through the fug of pain - I opened one of the boxes of stored books that I finally regained access to during the last lockdown hiatus. It was the box of my favourite books from the years prior to my marriage - both childhood and adult - the ones that I loved to read and reread. And they are all ruined by mould.

This might sound trivial compared to all the other things that I am going through - and the worse things happening to other people here - but it was an extra blow.

>187 -pilgrim-: I guess maybe it's different in your country. We have patient care advocates here in the US and their role is to coordinate various providers, manage insurance claims, research issues and resources, and document everything for you. They usually have a degree in health care administration, and are not expected to "sideline" the patient, they just help educate people on the process and their rights.

Some people find one through a hospital's or insurance carrier's care management group, or through a support group. My sister-in-law is on state disability and was assigned an advocate by the state's department of health. I guess if you had something similar, you would have heard about it long before now...

>188 -pilgrim-: {{winces}} ouch - that is a harsh blow. I'm so sorry...

>189 Darth-Heather: Ah, that is why I asked - it sounded as if it might be something that meant something different.

Here, an advocate is the Scottish equivalent of a barrister.

A "care advocate" is likely to be someone appointed to represent, in debates with care homes, medical professionals etc., the welfare of a patient who has been judged by a court to be not mentally capable of deciding what is in their own best interests.

I admit that on my first reading, I was rather insulted. Then a bit more of my brain kicked in, and I realised that there was a good chance that we were thinking of completely different things.

It is actually quite an issue. I can often be completely housebound, yet a lot of things - such as Citizen's Advice Bureau, the normal first stop for advice on one's legal rights and how to get them, or the hospital complaints procedure - require personal attendance. And I cannot get anyone else to represent me.

Of course, health insurance is not relevant - since it tends not to cover major conditions - and there is little option between healthcare providers, since that is determined by which catchment area you live in, so there would be less call for one here. Doesn't mean I can't see some applicability in this situation, though.

But it is just depressing. I AM capable of researching treatments etc. But it is actually pretty pointless. The specialist that I am assigned to has their favourite approach, and are never interested in discussing it. If I ask about something, they say "very interesting... now what I intend to do is this ..."

>188 -pilgrim-: that happened to me once, lost all my childhood books due to mold. It broke my heart.

I'm sorry.

>191 fuzzi: I am sorry that you have been through this too.

It happened also to my father. I think it changed him. After that, he seemed to have little regard for owning anything.

I just finished cataloguing the contents of that crate today. Some can be replaced relatively easily. Others are less likely. 55 books.