Pilgrim is feeling lost in 2020

I have been running two threads, so that those who are just interested in reading my reviews can avoid my general wittering on about other topics.

This is a continuation of
https://www.librarything.com/topic/311546
but I am too far off from the automatic follow on, and I haven't the heart for a piffle party, so I will have to start this thread the conventional way.

Big hugs to you. May you find strength whatever comes your way in 2020.

Seconding clamairy. Wishing you strength and love despite the brambles.

Wishing you strength (and a good map, compass and GPS).

Sending you best wishes.

I hope today went ok and did not have any of the NHS fiascos that have plagued you over the past while.

What they said!

You can always vent here to us. I hope you read fantastic books in 2020.

What they all said. You can indeed always vent to us. Strength to you.

>6 pgmcc: Yesterday did not happen!

I was given 4 different - and contradictory - reasons.

Will write more later. But I now feel completely without any idea what to do.

Half of me says "You wouldn't believe it possible"; the other half expects nothing else from the incompetents you are saddled with.

Sending you best wishes and a hope that your 2020 reading is full of delights to counter it all.

>10 -pilgrim-: That is so infuriating.

I meant to write more (hopefully later?), but for now will just say this:
For the last three months I have been saying that I do not wish to stay here, where I know no one. I want to die with some people that I know around me.

The doctors have consistently opposed this - to the extant of refusing to speak to the consultant to whom I wish to transfer treatment, when she tried to contact them.

The reason that they have given was that "it would require a hiatus in treatment of 3 weeks, which would be irreparably harmful".

If it is so harmful - why have they themselves arranged a 3 week period without treatment?

If is not - why was I prevented from moving??

>14 -pilgrim-: I'm so sorry. There aren't adequate words.

>14 -pilgrim-: What >15 libraryperilous: said. I'm am so very sorry.

The final of the 4 contradictory explanations given to me by the clinic regarding why my chemotherapy was cancelled for the 3rd week running (see >10 -pilgrim-:) was given to me by the senior nurse, who had made the appointment originally, was that it had been cancelled on the explicit instructions of the consultant. The nurse refused to give any reason for this, insisting that I must wait for today's appointment with the oncologist to explain his reasons.

I have now had that "explanation" from the doctor.

She claims that they did NOT explicitly cancel the appointment.

And the fact that the nurse insisted that he had received those instructions was "a miscommunication" and "unfortunate"

The fact that I have been told a direct lie is apparently completely acceptable.

So I am back to the situation described in >14 -pilgrim-::
Either they have done me irreparable harm , FOR NO REASON THAT THEY ARE GOING TO ADMIT - or the reason that they have for refusing to let me move was completely specious.

NB. In the ambulance I met an elderly lady, who was facing her third recurrence of cancer. She had just made a painful and completely pointless journey to the hospital, because no one had notified her that her appointment had been cancelled either. This behaviour appears to be completely normal!

>17 -pilgrim-: I'm sorry. I can't even begin to imagine this sort of "health care." It must feel like you are caught up in some hellacious psychological experiment.

It's like a weird and terrible combination of Kafka and Samuel Beckett. Who or what on earth is running this system?

>19 haydninvienna: You have described how this feels extremely accurately.

Are things possibly any better in the place you'd want to move to? Or at least not worse?

>21 Meredy: I cannot be sure, but I have some reason to think so.

Today's chemotherapy session was interesting.

I had had the usual blood tests before the chemotherapy session that I had scheduled last week, until the nurse decided to cancel it (for reasons unknown) - the consultant confirmed, on Tuesday, that the results of the blood test had been satisfactory.

As once no one sent out the necessary documentation (see previous thread), I could not have the blood tests performed at home by the district nurse. I was therefore expecting the tests to be performed at the clinic, as they were the last time that this situation arose.

Instead the nurse (the same one as cancelled last week's clinic session, without any medical reason or instructions to do so) after gouging around in my arm several times, finally got a needle in. He then proceeded straight to the chemotherapy without taking any blood samples for tests, only asking me whether I "felt well"!

After the chemotherapy, he insisted that certain of the prescribed medications must be taken, overriding the oncologist who had told me that they were optional, and had spec me to stop taking them (when I explained that I experienced no benefit from them, but that they seriously exacerbated my pre-existing medical conditions). The doctor then explained that the tablets served no purpose other than to alleviate symptoms that I am not experiencing, and can be safely omitted without harm. I explained to the nurse that the doctor had told me that these tablets were optional, but the nurse insisted that he knew better and that these must be taken.

After the treatment was over, I informed him that I had spoken to the oncologists, as he had insisted that I should do, but they were unable to explain the cancellation of my chemotherapy ,as he had claimed last Wednesday, since they were totally unaware that the chemotherapy had not taken place, and begun by asking how it went. I further pointed out that the oncologist had checked my medical records in front of me, and confirmed that no doctor had cancelled my session. I also told him that snce he had stated last Wednesday that he had cancelled it on the instructions of the consultant, she had arranged for me to personally speak to the consultant, who confirmed that he had given no such instructions.

The nurse then flatly denied having made such a statement last Thursday (despite my pointing out that were witnesses, since my phone has been on speakerphone due to the previous nurse having been unable to hear me), stating clearly that he had no authority to cancel appointments.

He therefore claimed that no such appointment could ever have existed, and that I must have been mistaken.

I asked him why, in that case, he, personally, had written that appointment nto my chemotherapy log.

He said that he did not have the power to make appointments, and that he could only have been copying it off the computerized record.

So, either all the nurses that I spoke to (who were double-checking that I had not got an appointment that day, and investigating why) - which included him - were lying to me, or he has just admitted that the appointment WAS cancelled - contradicting his earlier statement that that could not have happened.

He then claimed not to remember anything about this (although at the same time somehow knowing that he had not spoken to the consultant - thereby contradicting his repeated statement last week) and asked for "an opportunity to find out what happened".
I pointed out that I had phoned the clinic last week, in order for them to have an opportunity to do just that, and that he had been asked to phone me on that day after the sister had done just that, and identified him as the person who had made the cancellation.

I pointed out that I had given him the opportunity to explain last week, and that he had refused to do so, choosing instead to claim that he had received instructions from the consultant that I now knew had not been given. I asked him whether he was now claiming that the two oncologists were lying (he said "of course not"), but still refused to explain his actions - now contradicting everything had said last Wednesday, by claiming that he had done nothing.

He then said "but let's move on, the important thing is that you have had your treatment today, isn't it? You are going to continue, aren't you?"

Well, no, that is not the "important thing". The important thing is that I have now had a 3 week break in treatment, something that I had been previously told would adversely affect my lifespan to an unacceptable degree, and that I can feel the lump under my arm larger and more painful, presumably as the consequence.

The treatment I had today does not "fix" or undo this; it is simply the weekly treatment, scheduled to occur anyway.

I do not know how to deal with a man who is capable of standing there lying to my face.

He seems genuinely to expect me to accept that he had consciously and deliberately chosen (when I spoke to the nurses last Wednesday day I repeatedly asked why this was being done, given the doctor's repeated statements regarding how harmful a 3 week break would be) to shorten my life for his own reasons.

(N.b. He has been high-handed on previous occasions, insisting trying to insert needles in regions that are particularly painful for me (due to congenital issues with peripheral circulation) and completely pointless, because past experience over many years has demonstrated that they always collapse. This, naturally, resulted in pain and extensive bruising to no effect. So the next time, when he was overlying the other nurses and insisting on that location again, I repeated the reasons for my objections, and politely refused permission, choosing the option that he then gave of waiting for the phlebotomist (who correctly made the connection, first time, in a suitable location). But I have always been polite to him, and made no complaint about his attitude. I was not aware of any resentment from him. Not getting his own way there seems a very petty reason to set about harming someone's life expectancy.)

I have no words to express how sorry and angry I am at the treatment you've been receiving, and the incompetence (at best) or malice (worst case) that this man in particular has shown. He clearly should not be in any of the caring professions if he is willing to put someone's life at risk to cover his ass or salve his pride.

>23 -pilgrim-: As Claire said, I have no words. I am realy sorry about this.

This is heinous and immoral, and what you experienced with his comments is rank gaslighting. I'm so very sorry.

This is awful. I hate that you are having such bad treatment. Perhaps you should revisit moving. It seems that it could hardly be worse, and might be better.

What everyone else have said, I say, too.

Moving seems reasonable, all things considered. I so hope karma hits everyone involved.

I would hope you can find a way to move, despite what your HCPs are saying.

I'm so sorry you're having to endure this. I wish there was some place else you could go for treatment.

I wish that you could print out these threads and show them to someone who could at least move you, at best, put that nurse where they can do not more harm. But I understand the energy drain and risk that would be to your care. So I pray for mercy for you.

Thank you all for your support.

>31 MrsLee: I have no idea to whom I would show them. I hope that by recording a little of what I have experienced, it would do some good, somehow.

I never wrote here about what happened when I went into hospital last October. The memory was too painful. The matron of the chemotherapy clinic has been encouraging me to make a formal complaint about what happened on that ward. She assured me that I need not fear repercussions. I have not yet started the formal process, as I need to write everything down, but I hope the fact that I was discussing this with her, in the clinic, has no connection with >23 -pilgrim-:.

I am so sorry to hear about all that has been happening - it's appalling. Wish there was something that we could do to help.

The promised explanation, referred to in >23 -pilgrim-:, never materialised, of course. Instead I was simply assigned back to the same nurse again.

This week was a particularly unpleasant experience.

One effect of the hiatus has been to make me very aware that at the moment most of the pain and unwellness that I am experiencing is a consequence of the treatment interacting adversely with pre-existing neurological problems, as well as exacerbating the symptoms of the chronic condition.

Given that my time left is limited, I am seriously wondering what the benefits actually are to putting myself through this.

I recently read a book that spent a lot of time talking about the benefits of hospice or palliative care. That in many cases not only do the people have better quality of life under this model, but they actually live longer than those who go for 'treatment' to extend life. I don't know how it works in the UK, but maybe look into it. Since you can't be cured, at least enjoy the time you have. After reading the book (it's Being Mortal, btw), I've made some changes in my head about what I will do when the time comes. I guess I need to commit them to paper as well.

>35 Bookmarque: I do have a palliative care consultant who phones me about once a month to ask how I getting on, and make painkiller recommendations - which my prescribing GP routinely overrides or ignores.

I declined the offer of hospice care, because that would definitively trap me in this location, permanently. Also, after my experiences in hospital, I am extremely wary of entrusting myself to any institutionalised system of care.

A care team of many people, each looking after many people, seems to develop a one-size-fits-all approach, which does not work well when the main assistance that I need is with the non-terminal condition: the cancer is simply badly impairing my own ability to manage its symptoms. I am much better off with a single carer, who knows MY needs, not "what the average cancer patient should require". Particularly the bit in the manual that tells them to keep patting the patient...

Also institutionalised restaurant food is unlikely to be able to cope with the requirements of a medical diet that has nothing to do with the fact that I have cancer. Apart from the fact that (although providing halal alternatives) during my last hospital stay I was told repeatedly that it was completely out of the question that I should expect to be allowed to follow the dietary requirements of my religion ("there are 10 choices here, you have to choose one of these").

Since I AM dying, I would prefer to do so in harmony with my faith, not whilst being forced to violate its tenets for someone else's convenience.

The palliative care consultant who suggested this told me I would be much happier with the delights of Bingo (!) and a bar on site. I don't drink, so I gain nothing from the ready availability of alcohol, and since physical contact on neurologically-affected limbs is extremely painful, an environment that has a risk of continually being stumbled into by the mildly inebriated is my idea of hell. I don't expect to be brain-dead enough for Bingo to appeal until well after I am no longer mobile enough to attend such sessions.

On the other hand, since I would have to sell my home to pay for this, it would entail giving up my library, and any hope of traveling to the theatre, the opera, concerts, a decent film festival - let alone actual travel; in other words, all the things that actually are still capable of giving me pleasure.

And, of course, anything other than private, personal religious observance.

I was 'sold' on this course of chemotherapy on the basis that it would give me longer in which to still be able to do the things I enjoy; in practice, it seems to be taking away the opportunity to do any of them, whilst I am still physically capable.

Eeek. I don't blame you for staying the course you're on. And I take it home hospice care isn't an option? Gawande describes this here in the US - it's on the rise. A single carer trained in end of life palliative treatment is involved and there are things like emergency pain meds, specialized appliances like beds or portable toilets in the home depending on the patient, and also a 24-hour on call service to answer questions or respond to emergencies...which usually result in leaving the person at home, not hospitalization since that runs contrary to what hospice care is about. I haven't looked into how this is administered - by local hospital associations, long-term care communities or just Visiting Nurses, but I like the idea of it since I'd be able to stay in my house just like you want to do. Gawande's own father died in home hospice care after being miserable in the hospital. As painful as it was for him and his mother to come to terms with what dad wanted, they eventually gave in and I think his death was easier to bear as a result.

>37 Bookmarque: I have not met "home hospice" as a term before.

My current situation has some of the features that you suggest; I have an NHS-supplied hospital bed, and electronic armchair, both provided through the OT attached to the palliative care team.

The NHS system means both that I do not have to pay for these, but also that the range of items available is limited. None of the bathroom aids available would actually make the situation easier, for example (because they make incorrect assumptions regarding which parts of my limbs still have power).

The main difference is regarding carers. These are not provided under the NHS, which will become a problem when I need more continuous help, as I will have to sell my home in order to pay for this.

This will probably result in my dying, painfully, in some institution. Unless I am fortunate enough to die suddenly from heat failure first (A side risk of cancer that the palliative care consultant warned me about, but which I consider a rather good alternative, as such options go.)

It does sound as if the option that Gawande's father had is optimal.
(Book duly noted.)

Here in California, we had the option of hospice care for my mother, and it was a good thing. A nurse came to the home once a week, they provided many of the products my mother needed, and pain medication for her. However, if she fell or got ill, we were required to call them first rather than an ambulance, because the point of hospice was not to extend life, but only to help make dying as pain free as possible. If she had fallen and broken a bone, they would let her go to the hospital. If she had a bladder infection, they would test and treat it (because it is a painful thing which can affect the quality of life), if she developed pneumonia, they would give her pain medication and let the sickness run its course at home. It was a tricky situation, and even though mom did not want to extend her life, it was difficult for her to say "no" to treatment. There was a nurse and doctor on call, but they did not provide a live-in caregiver. They did offer a caregiver to sit with mom or shower her once or twice a week.

In the end, because of our physical limitations, we ended up having to place her in assisted living. She could also have had hospice there, but in the end, it wasn't necessary as she died of a massive heart attack on the way to the hospital. We felt that was a mercy for her.

Now, of course, I have moments where I question every decision we made along the way. That is human I suppose. We must learn to accept our lack of omniscience.

>39 MrsLee: My experience when my mother was dying was similar. We were able to keep her at home and the hospice provided everything, even morphine for pain. We had visiting nurses several times a week, a physical therapist and a social worker weekly and pastoral care if wanted. There were so many people coming, at least one every day, I lost track of them all. We did not have to pay for any of this; it was all covered by Medicare so my father didn't have to lose their house. The best part was that everyone we dealt with was very kind and willing to adjust to our needs. They made a sad situation bearable.

Dear -pilgrim-, I'm so sorry you are not getting that level of care. You certainly shouldn't be held hostage in your current location. Sometimes when people are having problems with a company they contact a TV troubleshooter. They run interference and contact the bigwigs. The publicity seems to get their attention and the problem is quickly resolved. Do you have anything like that available? Of course, I realize you probably don't want to call attention to yourself and may not want to go that route. It just seems that someone should be able to fix this.

>39 MrsLee: >40 Taphophile13: in Australia (Canberra) too. Regular visits by a good nurse, mods to the shower, free morphine and other medications, a fully adjustable hospital bed on loan ... and everybody cared! That is the thing I find least understandable about the debacle—that nobody seems to care.

>41 haydninvienna: I have been trying to work out how to express the answer to your final sentence.

But who are you expecting to care?

People who work professionally with sick people see a lot of misery; they would burn out if they actually cared about them as people, rather than seeing them as professional puzzles. This is not my pet theory, it was explained to me by a healthcare professional. Likewise I have read that the most successful children's surgeons are psychopaths - in the technical, rather than the popular melodrama sense - because most people would struggle internally to intentionally inflict pain on a child, even if the long-term benefit makes it the rational thing to do; it takes the psychopath's lack of empathy to enable them to proceed on the rational basis without being distracted by what they have to do. (The doctor who wrote the book was a psychopath himself, and argued that whilst it was harmful to his ability to bond with, or relate to, patients, it made him a better surgeon, as he was never swayed by emotional considerations.) And this is why most senior medical professionals are so thick-skinned.

To motivate themselves in their work, those care-givers (in the broadest sense) who are not purely motivated by the money, or career ambition, derive their job satisfaction from two things:
(i) the glow they get from success
(ii) the adulation from grateful relatives.

Once a quick fix is no longer possible, and they are not going to get the emotional reward of a successful outcome, their enthusiasm dims.

I observed this when my own mother was in intensive care. In the first few days, the nursing staff bustled around her attentively - and I don't just mean the essential obs and drips, but sponging her hands, plumping her pillow etc. Once the consultants had decided that she was not going to recover, they stayed away from her as much as possible (with one noble exception), only going to her to perform the essential tasks. It was not prompted by anything that she could have done to offend them - she was sedated into unconsciousness the entire time, so that it is actually unlikely their earlier kindnesses would have any effect either. It was simply an unconscious urge not to be around failure (which is naturally dispiriting for them).

I know that I am dying, the doctors remind me regularly. Yet I have noticed that quite a few of the nursing staff at the chemo clinic flinch when I say anything that reflects my acceptance of that fact - they are too fixed into a model where what they are there for is to cure.

Those who deal with the terminally ill have to be emotionally well-armoured. In the absence of the satisfaction of curing people, they get their reward in the reaction of the relatives, whose gratitude over how their loved one died gives them their afffirmation that they have completed a "job well done".

I don't think the comparative neglect of those patients who do not have vociferous relatives is simply the human response to concentrate your energies where you will be shouted at most of you don't (which in an environment short of both money/resources and time means that patients with vociferous relatives, or those who know senior staff personally, will get the best attention - I knew a junior doctor who confided in me that he had been instructed to ALWAYS make a bed available if a doctor needed admission, discharging or transferring patients add necessary to active this, for that very reason!) I think there is a subconscious urge to concentrate your activities where there will be most positive feedback - and that who go through this alone will eventually be dead, so there will be no positive feedback from them.

But if you meant "care about faults in the system", them there is no reason to assume that people do not care about that. But self-interest demands that the first priority on discovering a fault is to make sure that you cannot be punished for it. And that is more easily done if you pretend that nothing is wrong. Changing behaviour could be construed as an admission of guilt regarding previous actions.

My heart is breaking for you. This observation you wrote - "Yet I have noticed that quite a few of the nursing staff at the chemo clinic flinch when I say anything that reflects my acceptance of that fact - they are too fixed into a model where what they are there for is to cure." is borne out vividly in the book I mentioned by Atul Gawande - doctors (and probably nurses, too) have absolutely no training in death and dying (and despite our large, rapidly ageing population, little geriatrics either). They are only focused on fixing the problem. It's noble and makes a certain amount of sense, but we will all get there in the end, even them. I just wish that we could have left room in the model for this eventuality, not just postponing it.

Pilgrim, I just want to thank you for sharing your story with us here. I am called to assist with the dying process. I belong to our local Threshold Choir and this coming weekend will be taking a class on hospice care. Your insights are invaluable to me right now.

Sending you blessings on a smoother transition. Know that somewhere out here in internet-land, there are people who do care.

>42 -pilgrim-: I expressed myself poorly. I used to work for a solicitor who had a very large family law practice and saw a lot of emotional distress in the course of it. He used to say that the only way to avoid burning out (which quite a few of his colleagues did do) was to cultivate some distance. But that didn't mean that he didn't give every client 100%, just that he did it dispassionately. He stuck being a solicitor for more than 10 years and ended up as a judge--in the Family Court. What I find so hard to accept in your case is that they can't even do a professional job properly. Maybe you're right that they know the system is failing and are trying to make sure they are not blamed for it. And of course in a bad system there will eventually only be the kind of people who survive best in that environment.

Thank you - it is the people here who have been the greatest support in going through this.

I am glad that you find my thoughts informative, littlegeek. Part of my motivation in writing them here was a hope that people might find them informative about the realities of this situation.

>45 haydninvienna: I understand the government's purpose in setting up official targets, to try to penalise, and thereby improve failing systems. But I have long wondered whether they are counterproductive. Fines make an underfunded resource worse, and provide a powerful disincentive to admitting that anything has gone wrong. One might hope that people in the "caring professions" would actually care if people are getting hurt, but if the punishments for admitting this are too high, then only the very brave speak out.

>46 -pilgrim-: Agree completely. At one stage I was working for DEFRA in the UK, and never really worked out why anyone ever thought it was a good idea to penalise an already under-funded government authority (Railtrack*, not health-related) for service failures. And it’s definitely true that you get what you measure, so that if you set targets, the outcome for things not measured is likely to be forgotten about.

*DEFRA isn’t involved in health but I was working on something involving water companies that had analogies with some transport things.

>47 haydninvienna: There is a more insidious problem too.

I was on a waiting list for surgery; when it got too near the penalty deadline of 12 weeks, I was transferred to the list for the same op at a private hospital. Unfortunately, because of the chronic conditions, even minor surgery carries higher risks for me, and, when I reached the top of their list, and they actually looked at my notes in depth, the private hospital decided that they were not capable of dealing with possible complications (they had no overnight beds), so they punted me back to the NHS. This naturally put me to the back of the NHS waiting list again (despite my protests).

It then took 6 more months before I was offered an operation date. I presume that, once I had passed the magic 12 week mark, they were already going to be penalised in respect of me, so I ceased to be a priority. So anyone who would otherwise have hit the mark would be scheduled ahead of me, so that they only take the penalty for one patient, rather than two.

I have realised that the pain during chemo has been increasing so markedly because they are not using any painkiller with the IV line (as is standard for patients with CRPS). I asked about this at my latest meeting with the consultant. I also asked if it would be possible to have larger doses, spaced wider than a week, to give me a chance to recover between sessions. His response - stop the chemotherapy altogether!

I am very unhappy.

>49 -pilgrim-: I don't know what to say, besides we're all thinking of you.
I'm sure that doesn't help much.

>50 clamairy: Nevertheless, it does help.

My life continues to be interesting, in the unwanted sense.

On Saturday night, just as I was going to bed, I stood up, and it seemed that I caught a thread in my hair - there was a black squiggly line across the view from my left eye. Shortly afterward, I realised that it moved with my eye movements, not anything else - there was something wrong with that eye.

Pain, quite precise, started above that eye, about a quarter of an hour after.

I phoned NHS 111, whose second question was "have you had chemotherapy in the last 8 weeks". When I said "yes, last session less than 10 days ago", the ambulance arrived within 15 minutes!.

I then waited 6 hours in the hospital A&E department, before I saw a doctor. (They did take blood during that period, measure BP etc.)

5.5 hours after that, they did a CT scan.

After that, I was transferred to different hospital, to see an opthalmologist.

She did the same tests as an optician would, diagnosed vitreous detachment, plus a small haemorrhage near the optic nerve, and sent me home with instructions to arrange a follow-up locally via my GP.

So, after 15 hours in various hospitals (and 30 without sleep) I got back home with a diagnosis, but no treatment, and no explanation of cause other than a generic age range statement.

I am thankful, as it could have been a lot worse.

But something that affects my ability to read matters to me.

It seems unfair. Haven't I got enough going on already?!

>52 -pilgrim-: Ye gods and little fishes. Indeed it could have been lots worse, but dear me, you surely do have enough to cope with already. Strength to you.

>52 -pilgrim-: Several years ago I thought I saw a spider in front of me. It was a small hemorrhage in my right eye. I now have to see a retinal specialist once a year for an exam. All he does is shine his bright light in my eyes, press (hard) on my eyes, and say come back next year. The thought of losing sight is indeed frightening. I can't even imagine how much worse this is with all your other medical worries. Life is indeed quite unfair.

>54 Taphophile13: I sympathise with your fears. Did they give you any reason for why it happened? I find not knowing the cause one of the most disconcerting things.

>55 -pilgrim-: It's a common part of aging. Apparently that's also why the layers of my left retina are separating. I had thought that a lifetime of myopia, astigmatism and amblyopia should have been enough vision problems for anyone but now I have to worry about my retinas too. I hope that your eyes remain stable and don't give you any more problems.

>56 Taphophile13: I share the myopia and astigmatism, and also have permanently poor accommodation capability due to EDS. Thankfully I never experienced the "joys" of amblyopia though.

Have now been to the GP to arrange the visual fields test and other follow-up, I did ask whether there was anything I could do to avoid repetition. She said:
Don't smoke (I never have)
Avoid alcohol (I don't drink)
Don't eat too much salt (I never add salt to food, I only get it through "ready meals")
Exercise (A little problematic on crutches, but I try to make sure I get at least a (very) short walk in daily - indoors if unavoidable.)

It's actually rather depressing when one IS doing the "right" things and it happens anyway. (I am only just within the "at risk" age group.)

>57 -pilgrim-: I've been doing all the "right" things most of my life too but it doesn't really seem to help. I think a lot of it comes down to genetic luck. No one else in my family got bad eyes like me. The EDS sounds very difficult to deal with.

>58 Taphophile13: Yes, it is. Thankfully I don't have the worst subtype, which affects the major organs and leads to early death, but its ramifications show up in all sorts of ways.

Some online searching now has me worried. Apparently optical haemorrhage is known possible side effect of the type of chemotherapy that I have been receiving.

So I am now glad of the current "treatment holiday" and will try to ask more about this at the follow-up appointment (supposedly next week, but I have heard nothing yet).

>59 -pilgrim-: I knew someone who got cataracts at an early age due to chemotherapy and had to have surgery for that. Chemo is definitely a two-edged sword.

>60 Taphophile13: And in my situation, so is any surgery...

When I saw the emergency opthalmologist last Sunday, she told me that I needed to go to my GP surgery on Monday to get her to arrange an urgent follow-up appointment "with the opthalmology department at" my local hospital on "Wednesday or Thursday of next week" to carry out tests that she was unable to do at the weekend.

I duly saw a GP from the practice on Monday, who said that she thought "Wednesday or Thursday" would be impossible, but she would write a referral letter for"next week". I was concerned that an appointment letter would not reach me in time, so she told me to phone the clinic if I had not heard by Thursday or Friday.

On Thursday, I tried to look up the clinic's number, and found that my local hospital does not have an opthalmology department. I phoned the GP surgery to ask which doctor I had been referred to, but found that they were closed that afternoon.

On Friday I phoned the GP surgery, and was told that they had only sent the referral letter that day!When I asked how I could expect to get an appointment for "early next week" in that case, I was told to speak to the practice secretary.

When I did, she explained that the GP's dictation had been inaudible, and so they had had to wait till that GP had been in again in order to get her to clarify.

She also subjected to a lengthy rant about the fact that the opthalmologist should have made the referral herself, rather than passing it to the GP (I happen to agree, but this is not something I have any control over!), and that the clinic would probably not accept a referral from them anyway.

She did, however, tell me where she had sent the letter, and that department's phone number. When I spoke to someone there, they told me that they had received the referral at 16.05pm, by email. Also that it referred to an "appointment the following week" (which makes sense for a letter dictated on Monday), and was dated 14th February, so they had interpreting it as referring to not next week, but the week after i.e. TWO WEEKS LATER than the opthalmologist had said that I needed to be seen "urgently".

Furthermore, she did not think that they were the correct department, and had been about to email my GP's surgery to query this.

After I had explained the situation she said that she was now fairly sure that the referral should have gone to a different place, and that she would forward the email, with an explanation.

I explained that I am extremely worried, because the pain has spread and visual disturbance has not stopped.
All she could suggest was going back to A&E - and, as I pointed out to her, I cannot see how they can help since last weekend already established that my local A&E does not have any facilities and at the hospital that they passed me to, the opthalmologist cannot carry out the necessary tests at the weekend, because that was why she had asked for the referral to be made in the first place!

The lass I was speaking to was very sympathetic, but could do nothing on Friday, because no doctors were in, but had told me to ring again on Monday...

Very sorry to hear that, I hope that get that tended to soon! Good luck getting in touch with someone Monday/today.

>63 Karlstar: Thank you, Jim. I have a little good news to report on that front.

The first person I spoke to last Monday initially insisted that she couldn't do anything because I "was not giving her a valid NHS number", claiming that she"could not do anything until I did"! Actually, the NHS number that I was giving her was completely valid, there was simply no record of me on their system, because I have never yet attended there. She then maintained that they had never received any referral from my GP, and she "could do nothing until they did".

I pointed out that (I) I could not possibly give her a different NHS number, since that one WAS accurate (ii) that I doubted that my hospital number would be any use to get since (as I had started at the start of the call) I have never attended her hospital, but I was quite willing to give her my hospital number at the hospital where I had previously been seen, along with the name of the opthalmologist, and full GP details etc. (III) that I knew that they HAD received my GP's referral, because her colleague had confirmed on Friday that they had (quoting colleague's name, and approximate time at which the GP's email was received).

Eventually she stopped implicitly accusing me of lying and actually went to talk to her colleague. She came back with the message that the colleague "had some queries about the referral and was waiting for AC reply from the GP"... at which point I was despairing of ever getting seen within a reasonable time scale.

Eventually I got a phone call back, at the end of the day, confirming that the referral had indeed been made to the wrong department, and they were passing it to their colleagues.

And much to my astonishment, those colleagues also phoned me, and offered to see me the next day!

Furthermore, the technician was extremely thorough, and having taken a full medical history, not only performed the tests that the original opthalmologist had requested, but a batch of other ones as well.

I was equally impressed with the opthalmologist who saw me lafterwards to discuss the results.

The less good news is that the small haemorrhage near the optic nerve has not resolved, making the first opthalmologist's assumption that it was simply a result of the vitreous detachment unlikely.

There are three possible causes:
(I) it is a known possible adverse reaction to one of the agents being used in my chemotherapy
(Ii) It is a known possible adverse reaction to one of the medications that I have been taking long term for my other condition
(III) given my strong family history of glaucoma, it may be the onset of that.

Hence they want to monitor it closely.

I was extremely impressed by both the kindliness and competence of this team.

The news itself could be better. But it could also have been worse.

>65 -pilgrim-: A small victory, but especially heartening that you got proper care and concern. Finally! I'm doing my small part to lift you up in prayer.

Maybe a small victory, but a victory all the same.

I agree. Your prayers are appreciated, Ruth.

Ahhh, finally some folks who seem to be on the ball and care.

And (because good news is too freakishly unnatural?!) for the bad news - I need to work out how to fund emergency repairs to roof after recent storms here.
(Tarp will only last so long.)

And have still not recovered from getting thoroughly chilled during power cut at weekend. Still feverish.

Reading very little now. And having difficulty getting online.

If I ignore something addressed to me, or seem indifferent to your situation, please excuse me. It is not deliberate. Am unable to read much in the GD at present.

So sorry, pilgrim. I'm holding you in the light, as the Quakers say.

>71 -pilgrim-: What >72 clamairy: said.

Your first priority is to look after yourself. Just attend to that. You are in all our thoughts.

I actually have some good news on the medical front. I have not written about it before because I did not want to jinx it.

I found an oncologist offering a more hopeful prognosis, who has agreed to take me on.

This has entailed moving house to be in their catchment area - and trying to achieve that in the middle of a lockdown has not been easy! (And of course, the lockdown means that I have not been able to put the old house on the market, so it remains a financial strain and a worry.)

But the change in the attitude and behaviour off the nursing staff has been amazing. And whereas the previous oncologist had maintained that continuing with the same treatment as before was the only possible option, the current one believes that there are several that can be tried.

As a result, I start oral chemotherapy tomorrow. Wish me luck please.

Good luck!!! We're all pulling for you!

>75 -pilgrim-: At last, some good news. Best of luck with the new regimen.
And staff attitude is an important part of patient care.

I've been thinking of you today, so happy to hear the encouraging news!

>75 -pilgrim-: Oh, I'm thrilled for you! I hope the new treatment helps, and I hope the new staff continue to be kinder.

>75 -pilgrim-: Good luck with the new situation. I am glad to hear something positive for you.

>75 -pilgrim-: Wishing you the best outcome possible. (That's called luck, right?)

Oh, this makes me very happy to hear this! I do hope this improves things for you.

OMG I'm SOOOOO happy for you and the wonderful turn of events. I hope that you can feel better soon, both mentally and physically. It's a huge relief to me, so I can only imagine the magnitude of what you're feeling. And I hope you can settle in with fewer worries than you have now.

>75 -pilgrim-: Great news!!! Good luck :D

Adding my hopes for the best, and glad you let us know. I've been thinking about you.

Fantastic news! All my very best for you!

Fantasticmarvellouswonderfultremendous! And good luck with both treatment and housing!

>75 -pilgrim-: Congratulations on leaving the toxic oncologist's behind. Hope the new one continues to provide the level of care you deserve.

And that you find bonus benefits from your physical move. Blessings!

That is great news1 I pray that all goes well for you, with the treatment and the move.

Thank you all. It makes such a change to have had something good to report.

I can further - tentatively - state that, although I permanently feel like a limp rag, I am not otherwise experiencing any ill-effects from this forum of chemo.

Although the limp rag aspect does not help when you have a house move to complete, and the panic buyers have made it almost impossible to buy the cleaning materials that one would normally user on a new home - and particularly in these times.

The situation is not helped by the fact that the chemotherapy puts me into the "high risk category", which means that I am not allowed to leave the house, even to go into the garden, for the next 12 weeks!

ETA: Having had to be under conditions similar to the current lockdown, on chemotherapy grounds, since last October - with only two breaks - (and being housebound for several months earlier in that year after a fall), losing my walks outside is a big blow. If I seem to be going "stir crazy" rather quickly, that is why.

Sounds like things are going better for you!

Take a virtual walk: https://www.nybg.org/take-a-virtual-walk-through-nybgs-spring-landscape/

(I hope that helps some)

Lovely.

Or if a drive is more your style, please try this:

https://www.youtube.com/watch?v=ERxO_MKwh08

It's a road that was opened about 2 1/2 years ago, and yes the speed limit is in kilometres.

>92 fuzzi: Good to hear that the new regimen is better, so far! I hope that continues and that you can go outside soon.

>94 hfglen: I am sorry, Hugh. I did appreciate your video, and should have said so earlier.

Unfortunately, posting good news does appear to have jinxed things - I had some very worrying news last week that I still have not worked out how to deal with the consequences of, so I have been rather distracted.

>97 hfglen: No worries. Strength with the worrying consequences.

I now have a cough. It is probably due to moving dusty boxes from storage when I moved. But also a sore throat. Don't really feel any worse than normal. But doing the 7 day countdown nevertheless.

>98 -pilgrim-: That's not good. I've been having allergies issues, which is normal for me this time of the year, but even though I'm 99.9% sure that's what it is this current virus situation still makes you think. Fingers cross it's just dusty boxes!

>98 -pilgrim-: the dust gets me every time I move, sneezing and coughing.

Glad you finally got moved, hope the new place works out better for you.

>96 -pilgrim-: I'm so sorry to hear this, and I also hope the cough mentioned in >98 -pilgrim-: is seasonal allergies.

Bummer. Best wishes from me, and stay safe as best you can. For sure the dust would have affected you though.

>98 -pilgrim-: Keeping my fingers crossed that your cough is just dust related. Take care.

Thank you for the good wishes everyone. I really don't feel bad at the moment. I expect it is probably the dust - although its been over a fortnight since the move, I got most of the dust cleaned off the boxes and hoovered, and have done very little with them since then.

The problem is this: by self-isolating, I miss cancer treatment. I expect it is probably just some residual dust. (I had lung mets - no longer visible on last CT - so my lungs may be a bit hypersensitive.) But if I am wrong, and I took the virus into a ward full of immunosuppressed people? I couldn't live with that.

>104 -pilgrim-: Totally understandable.

Still have that cough. No better, no worse.

But because of that, chemotherapy cancelled again.

>106 -pilgrim-: aw shucks...

I am self-isolating, because of the symptoms mentioned in >98 -pilgrim-:, >106 -pilgrim-: etc.

This means that I am depending a lot on parcel delivery. Fortunately, I have a shed right next to my gate, handy to store parcels in, and so I have taken the option on the Amazon website for "if you are out, delivery parcels to shed".

Unfortunately, the delivery woman ignores this instruction.

The note through my door informs me that she has dumped it in the recycling BIN.

I can't reach the bottom of the bin. It is refuse collection day.

To go out and try to intercept the refuse collectors would break quarantine.

Why does this woman think I pay for her to throw my parcel away? In what way does a blue bin resemble the shed that she has written instructions to place parcels in?

The logic here escapes me.

>108 -pilgrim-: no logic, just an attitude. Some people don't care about doing a job "right" unfortunately.

Can you put a note on the bin for the refuse collectors?

>109 fuzzi: Good idea.
(Although I am not sure how good an idea it is to use things from inside a rubbish bin while immunocompromised.)

Would she rather I answered the door and she caught the virus from me?

(If by "attitude" you mean irritation that I am not answering.)

I have a lot of sympathy for people in the lower paid parts of the service sector, who are forced to continue going out into an environment where careless members of the public can breathe all over them.

But if protecting them offends them to the extent of their retaliating for the perceived offence by actively trying to make me ill, I am tempted to rethink my position..

Why can't she leave the package on your step, knock and then walk away?

Here is a short video of my second pond, hope you enjoy the birds calling and the peaceful water noises:

https://www.youtube.com/watch?v=LNeyhccbNJk&feature=youtu.be

Our delivery people have all done as fuzzi suggests - put the package on the step, ring the bell, then move away to a safe distance until they see you retrieve the parcel. (Presumably if you don't get the parcel in a couple of minutes they assume you're out and take it back to the depot.)
But as you say, if you've given a clear instruction they really should be able to follow it.

>111 fuzzi: Lovely. The rabbits appear to be getting on well with the turtle. They do not appear to be social distancing from the turtle. That could be a concern.

>113 pgmcc: oh, my friend, how you make me laugh! Thank you.

>114 fuzzi: This is no laughing matter.

:-)

>111 fuzzi:, >112 Sakerfalcon:

I agree.

I have also had delivery people (different company) phone me from outside the gate to demand that I come to the gate to collect a parcel, because they "are not allowed to enter premises due to government guidelines". That is illogical - to demand face to face contact, rather than putting parcel in garden, on social distancing grounds! But it comes from someone following the letter rather than the intent of instructions they have been given, so one can't feel angry at stupidity.

But the deliberate attempt to destroy my purchase, when I am reliant on such deliveries... yes, I really needed fuzzi's video after that!

Thank you for the sanity retrieval.

>111 fuzzi:, >112 Sakerfalcon: & >116 -pilgrim-:
As someone working for a delivery company I can say that our delivery people have been give the instructions to leave the items in a safe place at the door/in the porch, ring, and, if the item requires a signature, step back to ensure the recipient gets their item. If the item has been sent with the requirement for a signature the Postal Operative will now sign for the item when they have seen the person collecting the item. Our security procedures do not permit abandoning an item on a step. A number of our competitors do that and also do the type of thing -pilgrim- described. We have many photographs of this type of behaviour and they are great support material for our sales people when they are drawing comparisons between our service and that of our competitors.

We have a process whereby customers of companies that have collected mobile telephone numbers will get a text message the day before delivery giving warning that the item is due for delivery and asking if the recipient would like to change the delivery address, have the item left with a neighbour, or in a safe place, or if they would like it delivered to the local Post Office, parcel locker, or convenience store. Not all retailers use this facility so it is not something that happens for every parcel.

>117 pgmcc: nice to see some COMMON SENSE.

>116 -pilgrim-: you're welcome, friend. There are a few other nature videos on my tiny YouTube channel you might enjoy.

>118 fuzzi: I know, I lurked. ;-)

>117 pgmcc: Exactly. Sensible safety procedures are perfectly possible.

>119 -pilgrim-: Our chief executive has manage to have postal workers identified as essential under the current pandemic restrictions. He has collaborated with the unions in offering several initiatives, such as calling on vulnerable people; delivering newspapers; reduced postage for booksellers to send out books; etc... to support people during the lock-down. This culminated in his appearing with the Taoiseach (Irish Prime Minister) on the daily COVID-19 press conference and outlining how we can assist citizens.

>120 pgmcc:

I get the impression that certain quarters are thinking things out sensibly.

*stares hard at pub sign, and falls silent*

>121 -pilgrim-: alcohol is a disinfectant, no?

My Internet is incredible erratic at present. After young several posts and then watching them disappear when the connection drops before I hit send, I am taking the hint and shutting up.

>123 -pilgrim-: You use LT on mobile devices if I'm remembering correctly? Could you select all your text and copy it before you hit send, so that if your connection has been dropped your text will still be in your clipboard and you can just come back and just paste it?

I don’t typically use mobile devices for anything that requires typing, so I don’t have much experience using them to post on the internet, but I’ve used that copy-and-paste tactic on my desktop for decades.

I have read your thread and some of it brought a lump to my throat. I had a prostate cancer scare last year but it was fortunately caught early and treated without too much ado.

I think the feeling of being lost in the medical system and its lack of being bothered is frightening. My mother has had cervical cancer and bowel cancer and now has a brain tumour. Because of the several surgeries she has had and the fact that she has had pneumonia more than four times , the amount of scarring caused her small amount of bowel to be blocked and prevented from working. I was called by to England late last year as she was hospitalised. They told us they couldn't help her and she was transferred to a hospice in Pontefract for palliative care as she awaited the inevitable. When the medical carers felt that she had a matter of a day or two left the decision was made to remove the tube as it was painful for her in order to give her a little comfort in her last hours. In removing the tube they managed to disturb something and her bowel started to function again and she was able to return home again. She has now had several months at home. She is still on borrowed time but I am thankful for every extra day we get to spend with her. Even though I have had to return to Kuala Lumpur, I speak to her most days.

Thanks for making me welcome in the group and I hope that things get better for you soon.

Thank you for your kind words and support, Paul. I am sorry that you and your mother are going through this, you both will be in my thoughts too.

Things are very difficult right now, so I won't be here in GD much for a little while.

I note that LT shows that we have 122 books in common, which is impressive because my LT catalogue only contains books that I read, acquired or added to my Wishlist since joining in 2018 (plus an attempt to start cataloguing some of those currently with me), and not any of those that I read previously or have in my main collection. The recommendations that LT makes for me from your catalogue shows that in fact the overlap is likely to be far greater. I hope that this will lead to many interesting discussions in the future.

>124 YouKneeK: Thank you, yes, I usually do this for v reviews. I know my failings, I know that they will probably be lengthy. But conversations and discussions I tend to write on the fly, rather than preplanning. And so it comes back to bite me...

>126 -pilgrim-: "Things are very difficult right now, so I won't be here in GD much for a little while."

Best of luck with all you're facing, pilgrim.

>126 -pilgrim-: What Clam said.

Sad that you find yourself trapped in such a situation during severe crisis. I can pray for you, but I cannot help you. Sorry.

>126 -pilgrim-: You will be in my thoughts and prayers, Pilgrim. I hope that this will pass quickly.

>126 -pilgrim-: I hope this passes and you are back soon! Good luck.

>126 -pilgrim-: Hope your feeling better soon and back to posting.

Since the pins-and-needles in my hands (CRPS exacerbated by the chemo meds - and, last week, by the radiographer insisting on sticking his needle into my HAND, instead of my arm, which is not so badly sensitised) means that using them for anything (and yes, that includes typing!) is exceedingly unpleasant, the mashing of the replay icon on Audible to listen to an audio book is not a great improvement on the problems of squintng at text with black smears imposed.

Does anyone know how long the pain behind the eyes is supposed to go on for? It may just seem that way because it is making me miserable, but my impression is that this time it is lasting a lot longer than the previous time.

>133 -pilgrim-: I wish I could tell you.

Is there anything with voice commands you can use to play your books?

>134 fuzzi: I am not aware of anything - suggestions welcome.

In don't tend to get on terribly well with voice recognition systems. They don't seem to like my accent.
https://youtu.be/HbDnxzrbxn4 (Warning for strong language on link)
Not that I am Scottish - but it expresses the principle rather well.

(And my apologies for missing your post earlier.)

>135 -pilgrim-: Haha, that video was hilarious, thanks for sharing it.

>133 -pilgrim-: I don't know, having never experienced anything remotely like what you are going through, I hope it clears up quickly for you.

I have gallstones. I know that I have gallstones. But since surgery is not a good idea, due to other conditions, I just take the medications and try to keep them quiescent that way.

Last weekend I opened and ate some canned French food that a friend had sent "as a little luxury". I didn't stop to read the label carefully enough. It was delicious. It was enriched with goose fat.

Now my gallstones are inflamed; and since that affects the liver, I have to miss this week's chemotherapy.

Had to miss the last one too, because the pharmacist told me to ring a certain number if I had any queries with the new medication. Since it came with a contraindication for a family history of glaucoma, which I have in spades, and no one has mentioned this, I phoned the enquiry line that I had been given, but could not get an answer - since I had taken 1/3 meds before discovering the warning, I could not proceed. Eventually got hold of oncologist on Monday, and she podtponed it to Wednesday - and on Tuesday night the gallstones hit.

Not happy. I spoke to the duty pharmacist on Saturday, and he said he could not say definitively whether the tablets were safe without talking to a colleague; he was supposed to call me back, but did not. When I called in again, I was told by the nurse that did not consider the question a priority and so she was not going to pass out on to anyone! I don't think having to wait till Monday is acceptable, when I had been told such queries could be solved over the phone!

>138 -pilgrim-: This doesn't seem to have been a good month for you, but I hope that things will start looking up for you soon. I will be remembering you in my prayers.

>138 -pilgrim-: *along with >139 Majel-Susan:*
You are just having a bad time of life right now, aren't you? Fist bump of support...

>138 -pilgrim-: Ugh. What >139 Majel-Susan: and >140 BookstoogeLT: said.

>138 -pilgrim-: Oh no :(

>134 fuzzi: I get really impatient with people who decide what is best for others in a condescending manner. I've experienced it enough helping my elderly father get medical care he needs. Everyone needs an advocate when dealing with officious types.

Sorry they're making things more difficult for you.

>143 fuzzi: There are plenty of people who would like to take over and run my life for me - in particular, to take control of my finances and device what I can and cannot purchase. Practical assistance with the unpleasantnesses of daily living is conspicuously absent.

It is strange the number of people who assume that if your legs and hands don't work properly, then that is an indication that you must be unable to think clearly, and are therefore stupider than them.

I don't think attitudes towards the physically disabled have improved much since the Middle Ages. In fact, I think they have deteriorated. In those days the lack of pain relief or assistive technology would have been horrendous, but at least physical disability was accepted as a natural part of life then, and you could anticipate being treated with some sort of respect.

Case study: I hire a financial advisor. I have a degree in physics with a heavy mathematical component. My care assistant left school without any qualifications. The financial advisor proceeds to turn to HIM, and ask for HIS approval of his proposals - trying to cut me off of the the conversation completely. (My opinion is worthless, apparently - it is only MY money and MY future plans, after all.)

Have any of you, who are able-bodied, experienced your financial affairs being disclosed to, and discussed with, your PA without your explicit consent?

>146 -pilgrim-: It is scenarios like this that I wish I lived closer and could actually offer assistance. It angers me to no end how condescending some people can be just because someone is physically impaired or different than them. Especially in your situation where your cognitive ability is not impaired in the slightest. I hope you found a new financial advisor or, better yet, did it yourself. You might need some assistance with the research, having someone who can type in searches for you and click through sites easier if your hands are bothering you, but it should be doable with the right helper.

To answer your question, no I've personally never encountered that. I'm also relatively young and not physically impaired. Back in the day my mom encountered similar in the health care community where her doctor wouldn't take her seriously because she was a woman and only wanted to speak with my dad about her health. She ended up changing doctors.

>147 Narilka: The step I was trying to take was to cash in my pension, since on the doctor's prognosis, it is extremely unlikely that I will reach retirement age. Unfortunately, government legislation, designed to stop the unscrupulous "financial advisors" who cold-called people in the nineties and persuaded a lot of people, in normal health, to move their pensions simply too generate commission for the agents (often i info illegal schemes, so that the prospective pensioner lost their entire "pension pot") requires me to "consult a financial advisor" before I can do this. And the financial advisor has to write a report justifying the action.

Ill health truncated my career. So that is a relatively large amount of work for relatively little commission. (The report goes to the pension fund, not me - it is not I who have to be persuaded!)

Other bizarre behaviours:

Here was a medical form that had to be filled in by me - with my signature affirming is accuracy. He first of all wanted me to give him my confidential medical records (which were with me, as being the fastest was transfer between oncologists) - which obviously I refused, and was still determined to fill in the form instead of me, despite the fact that he obviously did not understand the medical terminology on the form, and kept making juvenile spelling mistakes (this making ME look like an idiot to the pension company!)

He did not act when I first instructed him, but left it for 6 months, so that the original pension quotations are invalid and I am supposed to pay for replacements - but I cannot get any explanation from him as to how a lengthy delay, including additional fees, was to the benefit of s client with extremely limited life expectancy.

I told him the date that I was moving out of the area, and that it would need to be resolved by then. tHe did nothing before that date; then subsequently (in May) emailed me "to arrange an appointment for him to come to my house to complete the process. Was he really planning to drive long distance, and then discuss my financial affairs in my garden (since obviously I am shielding, and not allowed to give anyone access to my residence)?

I am thankful that I appear better than expected. Last August I was given a life expectancy of "less than a year". I promptly engaged him that month. He introduced a delay of over 9/12 months. I don't find that reasonable.

Unfortunately, no other FAs within public transport travelling range were interested in taking the job.

He seems determined to make me wait until I am not longer able to use the money myself. It is all very odd.

>147 Narilka: And thank you for your support.

>146 -pilgrim-: >148 -pilgrim-: It's terrible that you should have to put up with so much condescension and incompetence, especially at a stressful time like this, and it sounds absolutely unreasonable that your FA is causing so many delays and, not to mention, outright ignoring you. It would make me furious, in your place, to be treated as the incompetent one. The impaired, whether physically, mentally, or psychologically, have a lot more awareness than they may appear to have on the outside, and their need for acknowledgement and respect is the same as everyone else's.

I'm so sorry about how you are being treated. May those who handle your requests and needs in a callous manner have it happen to themselves: "As ye sow, so shall ye reap". 🤬

Of course that doesn't help you now. I wish I could.

>148 -pilgrim-: I hope his attitude and service improves. I wish I knew the magic words to make that happen but do not, I just hope it does.

And the general incompetence/indifference continues.

I had a GP appointment last Tuesday. Supposedly. Since, under current situation, ALL GP appointments are now PHONE only, my appointment was "some time between 9am and 12pm". I waited by my phone throughout that period. (Pretty much precludes doing anything else, because I can't get back to phone fast enough to answer if I put it down (find somewhere to put crutches, reach in pocket, etc. etc...)) No call.

Later, I receive a text from the surgery claiming that I had "missed my appointment". Find in my phone log that the GP had decided to call BEFORE the 3 hour window that she had allotted herself, and then decided that, because I was not there, OUTSIDE the appointment time, she did not have to bother to try WITHIN the agreed period, but could just blame me.

Since I have not subsequently been able to clear a whole period of availability like that again (pre-existing appointments, such as hospital attendance), I am now trying to cope with the chemo side-effects whilst being out of my normal, regular medications (the ones that keep the symptoms of those pesky "pre-existing conditions" somewhat under control.

I feel like crap. Some of that is unavoidable. But a lot of it is unnecessary.

>153 -pilgrim-: Sorry to hear that, I hope you can find time for another appointment soon.

>154 Karlstar: Not much chance of that. Without the medication, I cannot seem to keep any food where it should be. Since then have been doing nothing except crawling between sofa and bathroom. And that much more frequently than the three hour interval demanded.

It's now a vicious downward spiral, with no end in sight.

That's awful - the carelessness of the doctor, and the subsequent side effects. I can't imagine the recent heatwave has helped either. You are in my thoughts and prayers.

I moved here just before the lockdown came into force. Three days after the move, my landlord emailed me, confirming that they have notified the utility companies of the change of tenant.

I have heard nothing from the utility companies, and when I tried to contact them, I get a recorded message saying that their staff are working from home due to the pandemic. In order to leave a message, I need to type in my account number - which I cannot do, because they have not yet given me an account number.

So all I could do was assume that their post was delayed by the fact that no one was i physically in the office to put things into the post, and wait.

Today I received my first communication from them.

It was a hand-delivered letter threatening court action for "non-payment of bills"! (You know, the ones that they have never sent me )

So I phoned the company today and pointed out that it is usual to send a welcome pack, account details, and little niceties like an actual bill, before making threats of prosecution.

They refused to apologise. They deny receiving the notification from the agent. And "the letter was just a way of making you get in touch".

I pointed out that if they had asked me to get in touch, I immediately would have, and that it is normal to make contact yourself first, and notify your customer of their account details, so that they are ABLE to contact you, rather than making threats with your initial contact.

They refuse to apologise, blaming "the pandemic" for their not having acted on the agent's notification, which was presumably sent to their physical office.

So, how did "the pandemic" force them to choose to make their first communication to me a THREAT?

>157 -pilgrim-: I've been given lots of excuses from companies and offices for lack of communication and service, most of it bogus. Some of us really did our best working from home/working remote. Some people seem to be using the situation as an excuse to sit on their duff and do as little as possible.

I'm sorry for all they are making you go through. It stinks.

>157 -pilgrim-: UK government authorities, and I’ll count utility providers among them, are not renowned for their courtesy (or indeed any other kind of good manners). When we first moved to the UK in 2006, we rented a house in a village near Bicester and the agent notified the TV licensing agency of the new tenancy, as agents are apparently required to do. Shortly after we moved in we got a letter from the agency reminding us that we needed a TV licence (at the time we didn’t even have a TV set), and threatening a police interview “under caution”. I am stone cold certain that they used those words. I wasn’t going to take that lying down so wrote to the local MP. In their reply to the MP, the agency simply denied having threatened us. Not too long afterwards our goods, including a couple of TVs, arrived so I ponied up for a licence and all was well. But yeah, the phenomenon of government authorities bringing up the heavy artillery right at the start isn’t a new thing.

>159 haydninvienna: Yes, I have met the TV licence people issue before.

The first time was when I first bought a TV. And fully bought a licence. And then started getting the threatening letters. I fully phoned them and pointed out that I HAD a licence. The threatening letters nevertheless continued, up to appointing a date for a court hearing.

I eventually sought the assistance of the local Post Office, and asked them what was wrong with the licence I had purchased (a physical, officially stamped piece of paper in those days.)

Eventually I found out that the so where I had bought my TV had written my address incorrectly, by omitting which flat was involved, so that the TV licence company, without checking that I actually lived at the address the shop had given (which was my landlord's address, since I was renting an annexe of their house) proceeded against me s if I lived in her house - and they, of course, were walking down the path to pass the letters on. Since they often received my post, due to the postman not bothering to make the same walk out summing that the same letterbox applied to all, the fact that the TV licencing letters had originally been sent to a different address was not immediate apparent.

I had, of course, in my phonecalls to the licencing authority, stated my address correctly, but they had obviously ignored that as an irrelevant detail.

They only stopped when the subpostmaster photocopied both the letter regarding prosecution for non-possession of a licence AND my licence, stamped both with his official stamp, and submitted them in the channels that he normally sent notifications of payment.

Thank heavens for the local subpostmaster who knew his customers personally and was willing to go beyond the call of duty in this way! They are a vanished breed, with the large scale closing of such places due to "economies of scale". I doubt that I would be able to solve the problem in that way nowadays.

I have not had a TV or licence for over a decade. My eyesight does not make viewing a screen across a room a comfortable experience. So, since I rely on streaming anyway, I simply used only BBC iPlayer, whilst that did not require a licence. Once they changed the legislation to require a TV licence for that, I decided that, given how little I watch TV, a subscription to a streaming service was a better user of the monthly cost. (I prefer to get my news etc. from the radio anyway, since Radio 4 and the World Service provide rather more in depth coverage.)

I get the threatening letters every six months. But at least there is now also an automated method of reminding them that I have no TV.

And at least streaming services are now common enough that their employees are now aware of the concept of not being a licence. In the early years their tone was frankly incredulous that anyone could exist without watching a TV, and their acceptance of my notification that I did not was hedged with many warnings about what would happen "if our detector vans catch you watching TV" and that "our inspectors may require entry to your property to confirm that you do not have a TV"..

>160 -pilgrim-: We did away with TV licences in Australia many years ago, but the ABC is still running. A "licence fee" which is a disguised tax is really nonsense on stilts, and I wouldn't trust either government to reserve it to fund the BBC anyway.

>161 haydninvienna: I am relatively confident that it IS "ring-fenced", because when the BBC wants more money, it pleads with the government to reduce the exemptions - hence the switch to requiring a licence to watch the BBC streaming service, iPlayer.

What the dependence on the licence fee does for independence of reporting is another matter.

Holy smokes, if some government *expletive* tried to come into anyone's house to check if they had a tv, we'd shoot them!

This thread has been very informative....

>160 -pilgrim-: they have snooping equipment to spy on you, to catch you if you don't have a license for your television? Unreal. No license required here in the states, although the choices offered locally/digitally aren't any better than what the cable companies offer...imo. I prefer to read, anyway.

Some of those old-time civil servants could be very nice.

>164 fuzzi: And this is what they look like:
https://en.m.wikipedia.org/wiki/TV_detector_van

I have not actually seen one rising the streets for decades, though.

I doubt that they could detect TV reception via phone line, as opposed to aerial. That is assuming that they ever worked, as opposed to just roaming for intimidation purposes (which has been posited).

I vaguely recall detector vans in Australia too, back when there were radio and TV licences there, and the detectors apparently did work. I remember enough radio lore to know that an old-fashioned radio receiver emits its own radio waves on a specific frequency (455 Khz, IIRC) which can be detected some distance away.

Another interesting day at the hospital.

Since I have been having such a bad time with the medication side-effects, and since these appear to be in response to the side-effects of the medication that accompanies the chemotherapy (to counteract the "side-effects of the chemotherapy medication", which I have not actually experienced), there was a long discussion today about this.

I attributed the side-effects to the steroids, since I had experienced the same side-effects when the previous oncologist had put me on steroids, and they had decreased after he had allowed me too stop them. The nurse explained that this "could not possibly be due to" the steroids, since it is not a known effect of steroids, whereas inducing migraines is a known effect of the anti-vomiting medication (which she named), and therefore she wanted me to keep taking the steroids, but she would arrange for the anti-nausea tablets to be changed.

After a long interval, she came back and admitted that I had not been given the medication that she had blamed for the migraines (I had not recognised the name, but since medical staff switch randomly between official names, and pharmaceutical company brand names, this is not unusual. I had expected the senior nurse who had come to discuss medication side-effects to knows what I was actually taking!) So she has cancelled the steroids and made the anti-nausea follow-up tablets optional (but "please do take as soon as you feel nauseous, as vomiting reduces dose effectiveness").

Whilst I was talking to the senior nurse, and asking whether the extreme diarrhoea that the tablets have induced over the past fortnight could also be affecting dose effectiveness (I got a non-committal reply to the effect that they would not know until the next CT scan), a junior nurse came in with tablets (which I took), and the comment "that's you, then".

On arrival, I explained that I had not booked ambulance transport for the return journey because I did not know when I would be finished. (They told me last week that they did not want me to drive, and after the past fortnight, I have not felt up to it.) They told me not to worry, as they would make the booking "when your treatment is finished".

Some considerable time after the meeting+tablets, I went to the toilets (having notified staff as to why I was leaving the ward). I returned to find an ambulance driver, searching for me by name.

Given the nurse's comment, plus the fact that they said that they would book me transport AFTER my treatment was finished, I made the natural assumption that they had booked the transport because they expected me to use it. That proved not to be the case.

Halfway home, I received a phonecall, asking me to come back, because they had not given me ALL the tablets!

The ambulance driver said that if he brought me back, I could not get home by ambulance, because the service ended at 5pm. The nurse spoke to the driver, and told him to return, and not too worry about that, because they would arrange subsequent transport for me.

However, when he did, they insisted that he himself wait, because they only had to give me the tablets, "immediately". Fifteen minutes later, the tablets actually arrived. And I got driven home by a very unhappy ambulance driver who had thus been manipulated into working unpaid overtime.

...

>167 -pilgrim-: what a clown show. Really.

I don't know if you've ever seen the movie What's Up Doc, but your experience with the medications reminded me of the court scene. I found a clip of it, here:

https://www.dailymotion.com/video/x52fzyw

I hope it makes you chuckle. It usually makes me at least grin.

>167 -pilgrim-: And your drama continues. Makes me wonder if you happen to be one of those people to whom "things happen". The opposite of a golden child, as it were. Has this kind of thing always gone on with you, or just in recent years? maybe some other "things happen" person kicked the bucket and you got their Elisha cloak, a double dose ;-)

>169 BookstoogeLT: Your theory has merit. It has exacerbated recently, but "boring" and "ordinary" are not adjectives I would associate with my life.

Today I was taken to my chemotherapy appointment by an ambulance driver who refused to either weae a mask or maintain social distancing - as requested by government regulations here - as she "didn't have anything"!

I wonder how she knows, given that Covid-19 has an incubation period of 14 days and personally she transported other people yesterday? The latest studies that as many as 80% of people who have the virus may be asymptomatic, so how she feels is completely irrelevant.

She even marched up to me and physically pulled my mask off!

>170 -pilgrim-: That's assault. Please report her.

It seems that anyone who is being transported by ambulance may be at greater risk for all kinds of infections so the drivers/attendants should always wear masks. As for not having anything, Typhoid Mary insisted that she was fine too.

>170 -pilgrim-: That definitely crosses the line into assault like Tapho states. Not wearing your own mask is one thing, but forcibly taking someone else's?

>170 -pilgrim-: in the US that would be considered not just assault, but battery, as it involved her touching you against your wishes.

Shame on her.

Physical contact, putting you in fear. Police matter.

ETA and absolutely unforgivable for an ambulance driver.

>170 -pilgrim-: That's horrifying!

Report her, if you haven't already.

I was realizing, even with what we all said, is there any actual options for you? Or will it turn into a she said, she said, kind of situation?

I have very much appreciated all your supportive comments.

I just needed to take a very deep breath, before replying. Because this is not the first time something like this has happened.

During the period when the lockdown was fully in force, and no visitors were allowed inside one's house (except for properly equipped medical staff, in cases of emergency), and those who were isolating together, had another ambulance crew member barge into my house, without a mask on - not for any medical reason, but because she was curious about it (she was demanding to know whether I owned or rented it)!

She ignored clear and explicit requests for her to leave, from both myself and my lodger.

She started by blocking my access to my crutches by standing right next to them, and also insisted that she hover at my side at all times, even though there was no medical need, as I had explained, both when booking the ambulance, and to her, that I have no need of assistance in walking to the vehicle.

I had previously had difficulty in getting the ambulance service to transport my lodger with me to an appointment, despite the hospital having explicitly asked that they come if possible (the staff wanted them to hear how to recognise if I developed a fever etc.), on the grounds that "it would be impossible to maintain social distancing, as someone would be too close to the driver" (despite the fact that my lodger constitutes part of my household and we can therefore sir together".

Yet this time I was ordered to sit up front, near the driver, so that this completely superfluous second member of the crew could lounge in the more comfortable seats at the back!

It is worth noting that she put her mask on as soon as she entered the hospital.

And that time, I DID complain to the hospital staff. No one was interested.

It is not that I don't have a corroborating witness, BookstoogeLT. It is simply that what happens to me does not matter to anyone.

After that, I preferred to drive myself to appointments. Although I explained that I preferred to do so, rather than expose myself to risk from ambulance drivers who refused to wear PPE and observe social distancing, and although I have never yet had ANY side-effects immediately after treatment (they kick in later), I was asked to go back to using the ambulance.

This time, I think the ambulance driver took the precaution of making a complaint about ME to the hospital staff - she bolted out of the ambulance without a word when we arrived; my lodger found how to open the ambulance door and us out (since we were, by now, late), just as the driver returned with a (completely unnecessary) wheelchair.

Because the first thing the nurse said on coming to see me, to find out how the latest chemotherapy variation has affected me, was: "Are you feeling very anxious about the Covid-19 risk?"

I replied that not particularly, since I was observing the government guidelines regarding social distancing and wearing PPE, but that I was unhappy about an ambulance driver who refused to do either, on the ground that she "knew she did not have anything". I asked the nurse how the driver could know this, since I understood the incubation period to be 14 days, and presumably she picked up other people yesterday?

The nurse simply said "Oh", and went away.

It is not that I do not complain. It simply that no one is interested.

I have looked for a mechanism to make a formal, written, complaint to the ambulance service. I cannot find any.

And as for a verbal one? Well, apart from that being an easy route for them, as it leaves me with no written record of their response, I now have a sore throat and no voice...

My lodger has been suffering from flu-like symptoms since Friday.

Now, after two days of my mildest yet reaction to the chemotherapy, so do I.

(n.b. lodger has been behaving sensibly. Since first symptoms, had been keeping to own room a much as possible, and wearing mask at all other times.)

>180 -pilgrim-: I'm sorry that the health care staff have been so inconsiderate to you and irresponsible. One would think that of all people, they would take the proper precautions, but even medical personnel don't always practice what they preach.

>181 -pilgrim-: Hopefully, though, you and your lodger will feel better soon and stay safe. You are still in my prayers!

I have been a little more talkative for the past couple of days (here, I still do not have voice back properly !) because the past week has been a "chemo holiday" i.e. no chemotherapy last week.

On Thursday, I had an actual meeting with my consultant oncologist.

First of all, she wanted to know why I had not attended the CT scan that they had arranged for me last week. The answer was simple - because no one has notified me of it!

Nevertheless, as the nurse confirmed, by visual examination, the last time that I attended the clinic (a fortnight ago), my tumour does appear to be growing.

So, the oncologist concluded, since my veins cannot take IV lines, the chemotherapy tablets are "no longer" working, and there are "no further tablets to try", she recommended radiotherapy as a holding measure, before resorting to more extreme measures.

I was a little surprised, since the previous oncology team had told me that radiotherapy was "out of the question" because of my medical history - but then, that was the same oncologist who told me that no oral chemotherapy exists for breast cancer!

So I agreed to radiotherapy - but the question then arose as to whether it was worth my continuing the current oral chemotherapy. I started that I felt it had not been given a fair chance, since I thought the diarrhoea (first induced by the additional medication that they were giving to prevent the nausea that In have never actually had, and then from whatever I caught from the ambulance driver) was flushing the medication out of my system, before it could have full effect, as badly as if I had been vomiting it out.

The oncologist pooh-poohed this, saying that it was obvious that the capecitabine was simply no longer working, and I was already on the maximum dose.

The nurse replied that I was "just completing" my first cycle of venorelbine, referring to my attendance"last week" - when I pointed out that last week had been the "chemo holiday", she corrected to that to one complete cycle.

So the nurse has not checked what treatment I have actually had, but the consultant oncologist is making decisions about irreversibly painful future procedures, whilst not even remembering that she changed my chemotherapy tablets about a month ago, in response to the results of the last CT scan (and so I have had only 3 weeks on them, with violent diarrhoea accompanying all three did).

Furthermore, whilst under the misapprehension that I was still on capecitabine, she told me that there were "no more oral options"... So what then is the venorelbine that I am currently taking?!

>184 -pilgrim-: is there no one to which you can register a complaint about the idiocy and incompetence of your current providers?

You need an advocate, wish I lived closer. I've been there for my father many times, not necessarily arguing with physicians and nurses, but being forceful about the situation and their answers.

>185 fuzzi:
There is a complaints procedure. But they have told me that they have about a six month backlog, "due to the pandemic".

And I agree, I do. Feeling knackered 80% of the time makes fighting difficult.

And I have now received a phonecall telling me that I "have" to attend a new CT appointment on a date that it will cost me a great deal to attend - because I have "no option" to change this appointment because I "failed to attend the previous two appointments".

They are, of course referring to
(1) the appointment that no one bothered to notify me of &
(2) the appointment that the ward staff did not bother to notify me of, until it was too late for me to get there on time (despite having kept me sitting around around for an hour, waiting with a needle in my arm).

So it is, apparently MY fault that I was not notified. Or is telepathic capability expected of all patients nowadays on the new NHS?

The nurse who had taken responsibility for notifying me of the appointment, was not going to "get in the middle" when I explained that it would be really extremely harmful to keep that appointment, but that I can phone them "if you like". Except, of course, she knows that I have not got my voice back, since she could barely make out my replies, so she is secure in the knowledge that I can do nothing.

And of course, the thought that she might actually act to undo the consequences of her negligence - inconceivable.

I am trying to decide what to do.

There has been a lot of emphasis on how "essential" this CT scan is supposed to be. But, since it was not important enough to actually tell the patient about (twice), how important can it be?

Whilst the consequences of missing the other appointment - also for the third time (since I was prevented twice before, once by their rescheduling my chemotherapy, and once by the illness that I caught from the ambulance driver) are real and tangible.

One automatically assumes that when doctors say something is important, that it is. But if it wasn't worth a simple notification, how important can it be?

(As an example: one consequence of attending, on this new date will be that I still will not be able to access my bank account - for another month (longer if the radiotherapy starts, and makes me too ill to leave the house). I have had no reply to my emails, so it appears I will have to travel to resolve this. Inability to pay rent or bills, or buy food has its own serious consequences too.)

>187 -pilgrim-: how do people like this sleep at night? Do they have no conscience about their actions?

I guess that's rhetorical.

There are no words to describe the horror of what you are going through. It is a perfect storm of indifference and incompetence which no-one should have to face. I am praying for you and hoping that the people you have to deal with get their acts together soon.

I too have been reading this and am just horrified. I know there is nothing tangible I can do, which is partly why I haven't commented at all. (besides the whole caffeine, tired thing). I guess our words of unified support of you will have to be enough.

There is more going on that I don't feel up to writing about at present.

But I went for another CT scan this week. The raduographer was caring, sympathetic, and understood how underlying conditions affect me and worked with it. The result was an experience that was quick, smooth, and comparatively painless.

Her approach made such a difference!

>191 -pilgrim-: Amazing how someone's attitude can change so much of an experience. Glad that at least that aspect went well.

Still praying.

>191 -pilgrim-: I'm very glad to hear it. My father had an appointment at the VA this past week. The front desk people were rude and officious, but the nurse and physician who handled his needs were all kindness and understanding. What a difference it makes, indeed.

>191 -pilgrim-: It's nice to hear you had a positive experience among all the other incompetence you've had to suffer through.

Remember in >184 -pilgrim-: I said that my oncologist felt I had "run out of oral chemotherapy options", given that "it is obviously not working" - and that only at the end of the conversation did I realise that she had forgotten that she had changed my tablet?

She arranged for me to see a different oncologist today. And I got the results of the CT scan that I had last week. My tumours have shrunk since the scan in June.

-pilgrim- is hoping that she is not jinxing herself - but she finally has some good news to report!

>195 -pilgrim-: thank goodness for that!
Are you still taking the new medication?
What is the next step?
How are you feeling?

>195 -pilgrim-: It is good to be hearing something positive for once.

>195 -pilgrim-: That is great news! Keeping my fingers crossed that the good progress will continue.

>195 -pilgrim-: Fantastic! Hoping very much that it keeps working for you.

>195 -pilgrim-: WOOHOO!! That is fantastic news!

>195 -pilgrim-: Great news! Long may it continue.

>195 -pilgrim-: Hurray! PTL...

>195 -pilgrim-: It's good to hear that you're feeling better!

Thank you ask for your good wishes. It has been a relief to be able to say something positive at last.

>196 Darth-Heather:
Yes, I will be continuing the current "chemo cycle" of "2 weeks on, 1 week off" - the week off being the reason that I am somewhat more verbose and coherent at some times than others. (During the week off, I feel mostly normal - except for when I have had additional infections (>180 -pilgrim-:, >181 -pilgrim-:,grrr!), after chemo I am weak, and brain feels more like soggy suet pudding.)

However, I am about to lose the "week off" pattern to some aggressive radiotherapy. Honestly, I am rather nervous about this - but it has a rather more hopeful tone than last Tuesday's appointment (which was so carefully checking that I knew that my cancer is terminal as to make me fear that they felt there was nothing more that they can do).

>195 -pilgrim-: wonderful news! Woo!

>204 -pilgrim-: Hoping for continued good response and yes, chemo brain is a well known side effect.

>195 -pilgrim-:, >205 fuzzi: That sounds very encouraging. Sending best wishes and virtual hugs.

I should never have written something hopeful here! I now feel utterly disillusioned.

I am tired of the endless, petty cruelty. And I am tired of the endless emotional roller-coaster of hope being waved and withdrawn.

Yesterday I was very angry. Now I just feel too tired of it all to care any more.

I just want it to be over.

>208 -pilgrim-: I've read this. You are not alone.

>208 -pilgrim-: It must be very heartbreaking and exhausting. There's not much I can say, but you have been in my prayers almost daily for the past two months. I hope you will find some comfort soon.

>208 -pilgrim-: Sending virtual hugs.

>208 -pilgrim-: Also sending virtual hugs.

I am waiting for the result of my Covid-19 test.

If you are tested at test centre, then the results come "within 48 hours to 5 days".

If you are tested using a home test kit, the results come within 72 hours - of the testing centre receiving the test. But first three test kit has to reach you (supposedly the day after you order it) and then you have to post it back.

My radiotherapy was due to start 2 days ago. Instead, I am isolating.

My chemotherapy is due the day day after tomorrow (having just missed two sessions - one the chemo holiday, and the second because of car problems + and other health issues, whilst away from home, trying to resolve financial affairs).

I fear the Covid virus is going to kill me, regardless of whether I actually have it (because of the delays introduced in my cancer treatment).

I was in touch with the hospital on Monday. They have told me that I cannot go there, until I have the test results.

ETA: I am feeling utterly exhausted. All I want to do is sleep.

>213 -pilgrim-:

>214 fuzzi: They're the best sort! And much appreciated.

Update: Test turnaround good - result negative.

The bad news is that hospital is currently undecided as to whether it is OK to go ahead with the treatment, given how ill I am currently..

And the craziness continues:

this morning, I was told "don't worry, the tattoos can't have rubber off" - when, of course, I have not HAD the marks done by tattoo, because of the CPRS . (Note also, that the first assumption is that I must be a complete idiot, rather than taking not of what had ACTUALLY been done.)

this afternoon, I got a call back by the radiographer, who says that she has spoken to "the specialist", who "thinks is better postpone the treatment in case you are feeling unwell as a result of the chemotherapy" (as I pointed out this morning, that is extremely unlikely, given that it is now over 2 weeks since I had my chemotherapy, and I was funny until this weekend) and because "you have just had a major operation".

WHAT MAJOR OPERATION?
The last time that I had ANY surgery was over fifteen years ago!

So I asked who "the specialist" is, and discovered that it is a doctor whom I have never met, but is on the same team as a doctor who I saw for the first time this month.

So now my treatment is being cancelled on the basis of an operation that exists only in the imagination of this complete stranger...

Oh my goodness, just when you think things can't get any worse. Unbelievable. Was the doctor even looking at the right patient's records?

>216 -pilgrim-: where did these doctors get their credentialing? In a box of cereal?

>217 Sakerfalcon: I presume that since the "usual" sequence is surgery, then chemo, then radio, she just ASSUMED that was the pattern I was following, and never looked at any records at all.

>219 -pilgrim-: shoddy, sloppy procedures! Shame on them!

They could/should be reprimanded.

I work with oncologists, so I've a clue.

It continues.

After I raised this point with the radiographer, she still did not want me to come in, on the basis that "your chemotherapy only finished recently" (what part of "chemo holiday" did she not understand?) and "this could be a reaction to your chemotherapy" (hardly, since it is now 2.5 weeks since I last had chemo, and I did not have the cough until last weekend) and demanded that I get the go ahead from the National Cancer Helpline.

However, on phoning them, I discover that they are quite clear that they are only there to answer questions re side-effects related to chemotherapy, and that for advice regarding treatment I should phone my treatment centre or GP (NOT them).

So I phone my treatment centre... And discover that the chemotherapy that I had scheduled for tomorrow has been cancelled "by the consultant".

Presumably I am supposed to have learnt that by telepathy?

After the radiotherapy was scheduled, I had phoned the chemotherapy ward to find out what my new chemotherapy schedule was, in the light of the radiotherapy. I was specifically told then that the radiotherapy would have no effect on my chemotherapy schedule, as it was quite all right to have both simultaneously.

Someone has obviously now decided otherwise. It would be nice if notifying the patient was considered to be part of the process! (This is by no means the first time that my appointments have been cancelled or rescheduled without my being told - and, of course, I then get a lecture on my delinquency in not turning up for the new appointment time that no one notifies me of.)

Hugs - so sorry for all you are dealing with.

The "it's off - no it's on again - no it's off again" saga continues...

The radiotherapy is now on again for tomorrow, the chemotherapy is still off, and the radiotherapy sessions that were due on Monday, yesterday and today - well, it seems that I may have just lost them completely.

ETA: BTW, I still feel like death (slightly) warned up.

>223 -pilgrim-: I continue to be astounded (in a very bad way) at how everything is shaking out.

>223 -pilgrim-: I'm sorry. I have no adequate words, and feel ineffectual sending virtual hugs and such, but I care, I pray for your stamina both physically and mentally in dealing with all of this.

One more thing: I was very surprised at my Covid-19 centre, at the emphasis on forbidding photography.

This of you who have likewise been tested, was that also your experience?

>226 -pilgrim-: What are they trying to hide?

>227 hfglen: exactly.

Ooh, spam - a tasty breakfast treat. ;-)

>230 -pilgrim-: On toast!

That particular spammer went for broke: he/she/it managed to spam one of the threads in the Spam Fighters! group. Accidentally, no doubt.

>232 haydninvienna: Most helpful spammer yet - to list themselves as candidate for deletion!

I have been quieter than usual because of a frantic rush: I took a 'chemo holiday' of one week, in order to try and resolve some issues related to my last house move. I was ill, which delayed setting off, and again on arrival, which limited how much I could get done.

I then had car problems, so could not get back in time for my chemotherapy... And the weekend that I DID return, just before I was due to start radiotherapy, I developed a "sudden, dry cough". Since my temperature is already unstable, and shortness of breath is standard, no one is going to let me into a hospital with the triple (quite rightly), despite the alternative explanation for the symptoms - hence the haring around (or approximation to it!) last week.

Despite the usual chaos I'm the hospital system, that story at least ended well.

I am now curled up, finding it difficult to eat without nausea. (And with a mound of undone paperwork that I don't feel awake enough to tackle.) This is the first chance I have had to stop, for weeks, it seems.

>234 -pilgrim-: I'm glad the story ended well.

Thanks for stopping by and letting us know how you are doing. We care.

>235 fuzzi: reading this from top to bottom was very scary and sutch a emotional rollercoaster that i thought i was at six flags but im happy it has a happy ending

I have just completed 1 week course of radiotherapy. I seem to be asleep most of the time that I am not at the hospital (or wishing I was!)

least you have an excuse i'm just always tired

I'm glad you got your therapy even if it makes you sleepy.

The medial chaos continues.

Yesterday being the last day of radiotherapy, it included a lengthy review, which discussed what reactions I had from the therapy - both side effects and benefits - and what would happen now.

It was explained that the radiotherapy would continue to work over the next two weeks. The nurse was surprised that I had not heard when my chemotherapy would restart, and said that she would try to find out, but emphasised that it could not be within the next two weeks, because the radiotherapy would still be working within that period.

This morning I received a phonecall from the chemotherapy ward, telling me that my next treatment would be next Thursday.

I expressed my surprise, given that I had spoken to the radiographer yesterday and been told that chemotherapy would not start for two weeks.

I was told firmly, "No". They had been told to book it for 12th.

Does this make sense?

I don't want to miss the chemotherapy if there is genuinely some urgent reason for overruling the radiology department.

But WHO gave them the order to book me in for next week? Have they read any of my notes??

So far I have been told:
1. "Radiotherapy will have to be fitted in, during the weeks in which you do not have chemotherapy."
2. "Now your radiotherapy has been rescheduled, it will be perfectly OK to have both chemotherapy and radiotherapy on the same day, I am sure the appointments can be scheduled around each other."
3. "Of course you do not have chemotherapy scheduled for tomorrow. It was cancelled because of your chemotherapy (we just did not bother to notify you in any way)."
4. "You cannot have chemotherapy for the two weeks after your radiotherapy, c as the process is still working."
5. "Your chemotherapy is starting 8 days after your last Radiotherapy session."

I don't know whether chemotherapy and radiotherapy are compatible or not.

But the explanation that because the radiotherapy would be still looking cells (both cancerous and normal) over the next 2 weeks, I could not have chemotherapy at the same time, made sense to me.

Explanation given as to why this is, in fact, untrue: None.

>240 -pilgrim-: my brain hurts trying to understand the docs i can't imagine how you feel i just hope they get their stuff together.

>240 -pilgrim-: Chemotherapy and radiotherapy can be used together at the same time, and such a plan would be called concurrent chemoradiotherapy. You can see here and here, that it is effective and has its potential benefits, although, granted, the combined side effects could be more unpleasant, but I think that the real problem here is the lack of care, planning, and information put into your treatment. It's so chaotic.

ETA: potential. All I'm saying is that it is possible to receive both therapies at the same time.

>241 justanotaku: Yes. They seem to lack all logic. If you dare look at my previous thread, you will see that the previous set were even worse!

Thank you for your good wishes.

>243 -pilgrim-: one of the worse parts is your probably not the only one where you are to experience this

>242 Majel-Susan: Thank you, that was extremely useful.

The second link suggests that this might be the right course of action: I just wish that they would talk to me!

The literature suggests that ccrt in labc patients with inoperable disease is associated with response rates higher than would be anticipated with systemic therapy alone.

And maybe talk to each other too? I thought the nurse doing the review was very competent, but she admitted she was missing a lot of information. Hence the opening question of: "when did you have your surgery?"...
(cf. >216 -pilgrim-:)

>245 -pilgrim-: I'm happy to help when I can. :)

The lack of communication in healthcare that describes much of this thread is just terrifying. I think everybody knows that it's less than ideal, but I had no idea before that it was this bad. Insane.

>246 Majel-Susan: i don't see it getting any better soon but it will one day.we just have to stay strong for now.

>247 justanotaku: True, such structures are very complicated and difficult to fix. It's a network of problems: in order to change "one" issue, a whole host of other things need to be changed with it.

>248 Majel-Susan: took the letters right off my keyboard but lets not dwell on it for now because in the end the outcome will be positive i just know it.

I had been feeling somewhat down because this was another year when I could not get to any Guy Fawkes'displays.

Then the neighbours on either side started their displays... :)

Another thing it would have been nice to have been told BEFORE starting radiotherapy, so that I could have made appropriate arrangements, is that the process continues to kill cells for another two weeks after the treatment ends. So the tiredness it causes is even worse immediately after the radiotherapy.

Now, when the doctor proposing the treatment asked "Any questions?" and I made a point of asking what side-effects could I expect as an immediate result of the treatment, you would have thought that this was the sort of thing she should have mentioned in her reply, wouldn't you?

>240 -pilgrim-:
MrsHouseLibrary had to have chemo every while doing radiation. The pump was installed on Monday just prior to a radiation session, and remained in place until after her session on Friday. That was her life for six weeks.
Interestingly, the chemo drug they used was the same one they had given her for her last round of chemo. I say interesting in that, it did nothing to get rid of her cancer; it was all of the other drugs -- the biologics -- that got rid of the tumor. The primary cancer drug itself, in her case, was like crack to the cancer cells; couldn't get enough of it! So, they used that cancer drug to light up all of the cancer cells to target them in her radiation treatments.
They say that, in pregnancies, the last two weeks is like the first nine months. The parallel to that in her radiation treatments was that each day of the two weeks after her last treatment was far worse for her than the degree of the side effects combined during that month and a half.
And on the fifteenth day after her last session, when woke up feeling great; lots of energy, balance restored to where she carried a basket of laundry upstairs without using the handrail. I didn't know until she was more than half-way up.
It was on the third week after she finished radiation that she started chemo again, with something new. She had just one chemo session. It went fine, but she had made a poor dietary choice when she felt good again, and that caused an obstruction they were unable to clear. The world became a much sadder place two years and two days ago.

Do the chemo.

>252 WholeHouseLibrary: Thank you for the feedback regarding whether the two can be prescribed simultaneously.

I don't mind following "doctor's orders"; it is when contradictory orders are given by different doctors, each with no recognition of what the other said, that I get frustrated.

I have been "doing the chemo" for 14 months now. Since October 2019 it has been basically* every week. It usually takes 3-4 days for the side-effects if each session to calm down enough for me to be able to think straight. That gives me a day or two to do my chores, grocery shopping etc. - and, if I am lucky, a few hours to do something enjoyable before starting the cycle again.

The side-effects have sometimes been better, sometimes worse.

The exceptions were:
1. Xmas 2019 when I had 3 weeks' off.
I was not told this in advance (in fact, I had been previously told that a 3 week break would be fatal!), so I could not plan anything for over that period. But I did manage to actually have 1 social activity, and 1 church service attendance, nevertheless. (The last opportunity I have had to do either.)
2. February-April 2020.
Had a 6 week break in order to move house. That was necessary, because the oncologist that I was seeing said there was no alternative to the form of chemotherapy that he was giving, which was producing excruciatingly painful neurological spasms as side-effects, and a life expectancy of less than 6 months, by that time. So I moved to change catchment area.
However the tumour grew in that time, and although it has responded to subsequent treatment, it had not shrink back to where it was in February.
3. The change in type of chemotherapy more means that I get occasional weeks off as a "chemo holiday". However the start of the lockdown in this country meant that I was unable to put my house on the market at the time I moved (currently staying in a rental). Whilst I was forbidden to leave current residence, since I am in the shielding category because of the chemotherapy and lung scarring, it was vandalised. Do have spent most of these "chemo holiday" weeks trying to arrange repairs and get the house on the market.
As a result of the last one, my tumour has become bigger again.
Since March I have had 3 half-days out of the house for purposes of pleasure.

I think MrsWholeHouseLibrary was lucky to have had someone that cared ss much as you so obviously do.

But the aim of her treatment, as far as I understand from your description, was to cure her, or at least put her in remission so that you could enjoy life together.

No one is offering me anything other than "treatment this week, so that you will be much the same when you come back for treatment next week - with the occasional week off".

It is clear that if I stop the chemo long enough to do anything with my life, the **** thing grows.

Yet, when I am not having l treatment, I still feel fairly close to how I did before the cancer diagnosis. (Still have the conditions that have been deteriorating over the decades, of course, and now have less energy to cope with them, but still somewhat functional.)

So I do wonder whether prolonging this semi-existence is the right thing. Or whether it would be better to stop the treatment and live a little more, before I die. (It has been made clear to me that the dying part is not optional.)

>253 -pilgrim-: you've been in my thoughts. Hope you're doing okay.

OK, I have a problem. I can't see properly out of one eye. I have not been able to see well enough to read for pleasure for a couweeks now. (Or anything at all for over 10 days - but I can now squint and make our some things, if I ramp the scale up.)

For a while, before it got too bad, I was posting reviews of books that I had read earlier, pre-written in a friendlier environment.

I am now at the stage where I can manage the LT pages that are still capable of zooming.

But the forums - squinting at more than the occasional piece of text is too much of sstruggle, and at the font size that I currently need, too little appears on my screen to cope with sliding screen back and forth over the sentence. Current levels of passion mean that I have very little concentration - or patience,!

So, I haven't been able to keep up with other people's threads.

Please don't take my "posting only about myself" as narcissism; I can't manage anything else at the moment.

I hope to catch up with you all when I can.

>255 -pilgrim-: Sorry to hear about that. I can only imagine how frustrating it must be. Holding you in the light.

>255 -pilgrim-: We are glad to hear from you, please do that now and then as you are often in my thoughts.

>255 -pilgrim-: Hello friend, I'm researching text-to-voice reading options for you.
Hang in here.

>255 -pilgrim-: It is good to see you posting even if it's only now and then.

>259 Narilka: It is good to see you posting even if it's only now and then. Agreed. >255 -pilgrim-: You are still in my prayers. Take care.

It's good to hear from you, even though it's not good news. Take care of yourself.

Still looking out for you. You have been a pretty significant contributor to the GD.

>255 -pilgrim-: I'm spending a few hours this weekend catching up and I am so sorry to read the history of the past few months. Like others, it seems horrific to me what you have to deal with in negotiating medical bureaucracy at the same time they are dealing with chemo treatments and radiology treatments to cope with pandemic restrictions.

One day at a time, pilgrim. You will be in my thoughts.

Thank you for your support, Jill.

My eye situation is thankfully improving nicely, and optician says there was no permanent damage.

But my phone is now broken, and the lockdown level here means that the repair shops are shut.

Am checking in briefly, using borrowed equipment. Will have a LOT of catching up to do, when I finally get back on LT!

>264 -pilgrim-: Glad to have you back!

>264 -pilgrim-: That's great news about your eyes. Hope you can resolve your technical difficulties soon :)

Thank you both.

This situation with the hospital is getting no better; I just seem to be writing more of the same.

Ever since the radiotherapy,. In October, I have been waiting for a CT scan, to examine its effectiveness. I have still heard nothing.

I have "missed" one chemotherapy session because no one bothered to notify me of it, once I had notified them that I was too ill to travel to a previous one: all the message that I received was "No, you do not need to contact us".

At the last session, I specifically asked about what was next (given that they appear not to consider notifying ME an essential part of the schedule) and was told that nothing was scheduled because my consultant wanted to have a telephone consultation the next day.

I explained that my phone is broken, and that I had not been able to repair it because mobile phone shops are closed (as "inessential") during lockdown here.

I agreed to try to borrow my lodger's phone - made more difficult because the staff could give me NO IDEA at what time the oncologist intended to call, and borrowing someone else's phone forthe entire working day is obviously a much bigger favour than simply to keep a phone appointment.

I did not, however, consider it appropriate to give out their number without first getting their permission for both the loan and giving out their number.

So they asked me to ring back into the chemotherapy ward that evening, and notify them of the number.

The journey home is not quick, and I was concerned that I would not be able to make that call before the ward closed, but the person who has been taking my medical history and managing my chemotherapy (including, apparently, prescribing additional medications) told me not to worry: she gave me a "direct line" to the ward and agreed me that people would be working there until 7.30pm at least.

I got home after six, and phoned the number that I had been given. "This number does not accept incoming calls."

So I phoned the hospital switchboard, explained that I had been asked to call the ward on getting home, but had been unable to get through directly. I spent over half an hour listening to various ring tones, as my call was obviously being transferred around various empty locations, and then dropped.

Since I had been given the impression that this was important, and I had been definitively told that there would be someone there to take my call, I phoned the switchboard again, explained that I had just tried to reach the ward through them, that I had not been able to get through directly because the direct line that I had been given did not take incoming calls, but that I could give the operator the number that I had been given, if that would help. She said it would, so I did so.

She then informed that she KNEW I was lying, because
1. She KNEW that I had got that number from an incoming call, not the Post-It note that was in my hand, because (as I had already told her) "that number does not take incoming calls".
2. She KNEW that I was not holding the Post-It note that the women whom I had thought was a nurse had given me, because
3. She knew no nurse would ever give out that number.
She then hung up.

Silly me! Apparently assuming that a woman in a nurse's uniform, wearing a hospital name tag, who is permitted by the other staff to come up to a patient and take a personal medical history and then prescribe medications, is actually a nurse, is an unforgivable mistake.

And that attempting to contact the hospital in accordance with instructions justifies my being insulted in this way for being stupid enough to attempt to comply.

Apparently whether or not you can see have a consultation with your oncologist, as she was claimed to want, depends not on you, or the doctor, but on the whole of a switchboard operator with delusions of clairvoyance.

ETA: Since I have repeatedly been told that it is "grossly inappropriate" for me to phone the chemotherapy ward directly about anything other than chemotherapy appointments
- being explicitly told to contact them by a consultant NOT being a good enough excuse
- NOR being transferred to them by another department whom I was told (by that same ward) to contact (apparently I AM responsible if I dial the number that they give me, but it is transferred, without any warning to me, back to them)
- and I was informed last week that I have no further appointments (for the reasons given above)

- this appears to be the end of my interactions with the hospital system.

I know that I sound in a bad mood a lot of the time now, I am trying not to, but the constant pain is getting to me.

I have been taking regular prescription pain relief since my chronic conditions were first diagnosed.

Once the pain from the cancer started becoming noticeable, last Christmas, the palliative care consultant told me to double the dose of painkiller.

But my GP refused to prescribe that. According to her, the dose that I was already on was the maximum possible, and nothing would change her mind. The consultant said that there was nothing more that she could do, prescribing being the GP's responsibility.

And that is how the situation remained, until I came under the new oncologist. Since the chemotherapy does have neurological side-effects, which appear to interact with and exacerbate the neurological condition that first I have had for decades, she said she would also refer me to an expert in that condition.

The referral, promised in February, came through in September.

Except that this consultant had, in his own words, "no expertise or experience" with my underlying condition. According to him, he is not actually a pain specialist, but a palliative care consultant. (Why do I phrase it like that? Because the nurses at the chemotherapy clinic insist that they know better, and that he IS a pain consultant, despite the fact that that department has never heard of him.)

So, after waiting nearly 6 months, the promised expert has no experience with the relevant condition.

So he suggests simply increasing the painkiller dose. I explain carefully that my GP has already refused to increase my prescription above what she considers to be the maximum dose.

He explains to me that the dose that she was prescribing is in fact below the MINIMUM recommended dose, and that he "would not expect it to have any noticeable effect".

He tells me to raise the dose, gradually, to over twice the current level. I point out that, given her reaction to the previous palliative care consultant's instructions, I doubt she will increase the prescription this time. He insists that I go ahead and increase my intake anyway. I do so; but my GP continues to prescribe the same amount as before, and ignores all my requests for further prescriptions.

(I then have to postpone seeing him, because the appointment falls in the period when I have to stay away from hospital because am awaiting the results of the Covid-19 test. I try to reach him via his secretary, but the line just rings out. I try via the switchboard, who refer me to the "pain team"week tell me he has no connection with them, ask me where I saw him, and when I say "in an office in the Cancer Centre" transfer me to the chemotherapy ward, who say that this is nothing to do with them, and that it was "inappropriate" of me to phone them (despite the fact I am also notifying them about my possibly also having to disrupt chemo schedule). Looking online, I find him listed as a researcher at a different facility, who occasionally consults at this hospital. This explains why "his" phone line always rings out - presumably it is only manned when he has a clinic here. This gives me a foretaste of his difficult he is to contact.)

When I next see the consultant, I tell him this, and explain that, through following his instructions,. I now have very few of those tablets left. He tells me not to worry, as he will "write to the GP", and insists that I now increase the dose still further.

I point out that since she refused to listen to the previous consultant, I do not feel confident that she will act any differently this time, and ask how I can contact him if there is, as In fear, a problem.

He tells me that I cannot contact him, but there is no need, because "if there is any problem", I must contact the nurses at my "usual clinic" and they will resolve it.

I was unhappy at the thought of running through the medication supply faster, when the prescription issue was not resolved. But I did not feel I could defy a consultant's explicit instructions and still expect him to treat me, so I followed his instructions, and raised the dose to 3x its original level. Atv the same time, I put in a prescription request, at the new level.

As I expected, it was ignored. And within the week, I was almost completely out of tablets.

So, as I was attending the clinic, I raised the issue, as instructed.

The result: the nurse screaming at me for "inappropriate behaviour" (i.e. following the consultant's instructions). She tells me that I should have contacted the Pain Clinic. When I point out that he is not a pain consultant and that the department there or me through to her award what Ib try to contact him through them, she tells me that I am lying, and this because - despite her admitting that she has never met him, or even heard of him before - she KNOWS that he works full time at the Pain Clinic, and that it is "evidence that you are mentally confused" that I believe the man himself (and the evidence of his website) over her.

All this shouted in front of the entire ward, of course.

And what "should" I have done? Request prescription from GP (which, as said, I have tried multiple times already) and running him on his number at this hospital (well, I continue to try, but unsurprisingly, it was never answered).

She also tells me that I should contact my "named breast care nurse". I have never been given any such contact, at this hospital. But when I am her who this person is (because if one HAD actually been allocated, and this is simply another little detail they never bothered to notify me of, surely it will be on my medical records?) she refuses to te

So, I go from 3x the original dose to zero.
Which, since this medication has many side effects other than purely on pain, completely wrecks my ability to manage the other pre-existing conditions (as I had tried to warn that it would).

Then, when I miss the next chemotherapy session because of extreme digestive tract problems, muscle cramps such that I cannot walk - not to mention pain such that I can barely think - all of which are known side-effects is suddenly stopping this medication, they phone me to ask "why did you not attend?" (as if I had not notified them the week before, and got shouted at and insulted for doing so).

I have got most of the symptoms of sudden withdrawal more or less under control now. But this iatrogenic episode, combined with the radiotherapy, caused a 6 week break in chemotherapy.

And then, after 1 week, it is stopped again (as described in >267 -pilgrim-:).

I have lived with pain for decades. I know where this will end. But to have my pain levels deliberately increased like this, when, if I had not been so naive as to follow consultant instructions I could have had some months worth living...yes, I am angry.

I cannot think straight for most of the time. I cannot concentrate on anything.

I cannot fight them AND the cancer.

I also realise that none of the above is what anyone wants to read at this time of year.

But I am failing to pretend nothing has changed. And the sudden increase in pain is otherwise inexplicable.

I felt I owed an explanation.

>269 -pilgrim-: I am horrified by your story. I wish I could go over there and yell at people for you. Since that is impossible, I am sending virtual hugs, very gentle ones, so as not to cause further pain.

>270 NorthernStar: I appreciate those virtual hugs.

I have not been writing about this, because I didn't want to appear to be looking for sympathy.

But I have realised that I cannot prevent it affecting both my mood and how well I function, and the changes needed explanation.

>269 -pilgrim-: Virtual hugs from me, too, Pilgrim. I'm so sorry that you are having to go through this and that the medical care providers you are dealing with are so unhelpful.

>269 -pilgrim-: Thank you for writing this out. And please don't feel like you shouldn't. That is what this whole thread is all about. We want to know and while we can't "do much", we can sympathize and try to make you feel better in our own way.

>269 -pilgrim-: Adding more virtual hugs and positive thoughts.

>268 -pilgrim-: So sorry to hear about all this. I've dealt with a good bit of chronic pain, but not cancer related so my situation wasn't as complicated as yours, nor were my physicians quite so unhelpful. I understand the frustration and anger you must be feeling at being jerked around like this by those who are supposed to be helping you. I'm holding you in the light and hoping you can get some resolution and significant pain relief.

>268 -pilgrim-: Very sorry to hear you are suffering again, I hope they treat you better soon. If you've read my post in your other thread, I apologize, I read and posted there first.

>272 BrokenTune:, >273 BookstoogeLT:, >274 Narilka:, >275 Jim53:, >276 Karlstar:

Your virtual hugs and good wishes are very much appreciated.

>275 Jim53: I too have had chronic pain for decades. Unfortunately the chemotherapy does neurological damage that exacerbates it. And the cancer diagnosis means that no other department wants to get involved, whilst everyone who treats the cancer had made it clear that the effect that their treatment has on the pre-existing conditions is not their problem.

>276 Karlstar: You have nothing to apologize for, Jim. I separated the threads precisely so that the disasters I recount here so not stop people from getting able to discuss books with me.

I do not realistically think there is a way to reconnect with the hospital. Lockdown starts on Boxing Day, and I cannot repair my old phone (which was being spam attacked) with the shops all closed - and that is the only number that the oncologist now has (since I have been blocked by the hospital staff from pushing on a viable number as I was requested to.)

I am not going to be able to travel to go to the hospital in person to sort this out, because of the lockdown (and the ground staff, write correctly, would not let me park there without an appointment anyway).

So there will be no further treatment. It seems farcical that it is a not a doctor who decides that my treatment ends, but a switchboard operator - but that's how it is.

Lockdown may last for months, and, since I have previously been told that I will die within a few months without treatment, that is what I expect will happen.

I am angry. Bitter too. But the only thing I can do is resign myself to it. Not having to go through more of this treatment feels like a relief.

I would like to say a big "thank you" to everyone who has been so supportive this year.

I really could not have got this far without the ability to pop into the Green Dragon and enjoy some good conversation to take my mind of things, and some good people to listen on the occasions when the distraction just isn't working.

>278 -pilgrim-: More hugs from me. I'm glad that we can help, even a little.

>278 -pilgrim-: best wishes and virtual hugs from Mrs H and me. Looking forward to much more good conversation from you in 2021.

>278 -pilgrim-: Seasonal best wishes and hugs from the top half of the world!

I found that the lockdown regulations aligned, for the first time since I got here, with the withdrawal of hospital involvement (as described in >267 -pilgrim-:) that has had the silver lining of meaning that I have not been too physically ill to go out.

So I was able to attend the Divine Liturgy of the Nativity - my first opportunity to receive communion since the Feast of St Basil the Great (on January 1st).

I am feeling absolutely exhausted now, but very glad that I have been able to do this.

I hope you get some of those at least as we all look forward to a better 2021.

>283 PaulCranswick: Thank you, Paul. It is nice to see you back here.

And my best wishes for your and your family at this season too.

Those Dragoneers who know that I usually celebrate Christmas on 25th December O.S. (i.e. 7th January, according to the Gregorian calendar) may be a little puzzled by >282 -pilgrim-:. The explanation is that my nearest church now is pan-Orthodox, and follows the Gregorian calendar. Since no church attendance will be possible on 7th (tier 4 lockdown, with no Orthodox church in my "region"), this is probably a good thing from a practical point of view. Just a little disconcerting.

>285 -pilgrim-: Good heavens! I didn't know any Orthodox churches followed the Gregorian calendar! (But happen it does make life easier when coping with the rest of the world.)

Am currently spending St. Stephen's Day listening to a recording of the first concert held in the Cathedral of Notre Dame de Paris. It was performed on Christmas Day, the first to be held there since the fire. All performers in hard hats, and no audience of course. But marvellous, regardless.

So very sad to read of your on-going battles, -pilgrim-. As you note, it's so hard to have to battle both the system AND the cancer. I had seen the news story of the singers in hard hats in Notre Dame. I'm glad the concert is alleviating some of your mental discomfort.

Virtual hugs may not be very helpful, but ((((hugs)))) anyway.

>282 -pilgrim-: That is fantastic that you could attend the liturgy. I'd say I hope you didn't overextend yourself, but at this point, is there such a point for you?
I'm glad you chose to go out and not let the chance pass you by.

>287 -pilgrim-: This made me imagine the singers in our church wearing hardhats. It had me laughing out loud!

>289 BookstoogeLT:
I was shocked at how my stamina has depleted since the start of the year. But I do not really know how much to attribute to the illness itself, how much to the drastic reduction in activity levels due to exhaustion from the chemotherapy, and how much from the effect on my exercise levels of 4 months of being forbidden to go outdoors, even in my own garden, by government regulations. (Since my EDS limits whattypes of exercise I can safely take, indoor alternatives were not available.)

I went for a (very) short walk this afternoon to see if I can build up a little more stamina.

Not only hardhats, but work overalls as well. And as immaculately groomed (and the ladies made up) as only the French know how.

The health care system sounds absolutely frightening; I'm sorry it's showing you all the worst aspects of its "service." Keeping you in my prayers and agreeing with what >273 BookstoogeLT: said.

On the other hand, it's lovely that you were able to attend the Liturgy this year for Christmas. It's a shame, though, not having an Orthodox church in the region.

I'm so sorry to hear of the appalling and callous treatment you've faced from the health service. Sending more virtual hugs and real prayers for you. I'm glad you could attend the service in person and also enjoy the music from Notre Dame.

>290 -pilgrim-: I'm stopping by to check up with you. My father just got a tentative cancer diagnosis and I'm pushing hard, being his advocate with the VA here in the USA (similar in experiences to what you've described above). I wish I could be your advocate there, as well.

Merry Christmas, in keeping with the spirit of the season.

>293 fuzzi: I am so sorry to hear your father's news. It is the last thing you all will want to hear, especially with the health services so distracted at this time.
I am happy to know that you are able to be there, fighting for him. I hope the results of the tests are as good as they can be.

My best wishes to you both, and hope for health and happiness in the coming year.