Preparing an Ending
Strange how opinion changes.
Life experience; Having not been ill, and even in the early years of this illness, I would not have considered palliative care as an option. It shows that opinion depends on perspectives. Beliefs are simply opinions; often derived from what we don't actually know but this is faith, and faith is something essential. Even the science books are filled with a certain amount of 'conjecture' this being commonly held beliefs of that which is hard to prove, where "there is no research to show..." usually because nobody bothered to do it for their Masters degree/"Doctorate" etc.
Even the unit where I dialyse now know better than to argue this one. I tend, more often than not to be 'allowed' to go by what I feel. I don't change my mind when I've decided, and I don't give an opinion until I have.
This is not intended to be about religion but this chapter is included due to their being a very great need for thoroughness in my considerations. Though I do have a belief in God. And have learned that I prefer my God to not be punitive; and through experience and a un-certain amount of wisdom have cemented a belief that this God exists with power and authority over all and everything. The God that forgave and Saved Judas from evil punishments, that said Jesus would have to be the one to carry out the lesson for humanity that it can be free of such punitive judgements and live again. I therefore believe, all be it "blindly" -with no real proof. in reincarnation. Maybe in order to make up in advanced or thereafter what was said to have to happen. And the world is said to be a stage, and therefore I say this: How do we know the person known as Judas in one life hasn't been again or before in some other guise, that is as a very different person and become a Saint or whatever. And if so would show the text "there is but one life" to mean -hopefully- that I won't have to come back as a dialysis patient ever again. Just for examples.
I have prepared my Last Will, A Living Will, Proof of my considerations: This has replaced a need to see a psychologist and much of it is included in this hub. I have given this hub-space to it, because psychologists are still only people -like myself. In my dealings with doctors I have learned that most of them, if not all seem to believe "God" has put them there to do work that he doesn't have time to do, or is "beneath" him, or rather not as high a priority as other tasks. But in getting to know these people a little bit more, I realised often that they may call a totally different being as their "God". Again, some would say it is I who is mistaken. But if there wasn't choice there would be less work to do!
Beware: A Living Will, still has 'grey areas' in the UK. And as a legal document, I feel I may be bound by their rule that says you cannot gain public support for yourself etc. So I am erring on the side of caution and therefore will not be publishing this solicitor drawn up document. Only my own work is included here. With various sources, in some cases: Though as this was not really written with much concern as to what universities may think, I have not added a bibliography. If you are considering the same, I would say feel free to reference this as a source as I believe capable of handling any consequences. But ...
And this is very important. This is not written as a suicide note. I have given plenty of time for all the important people in my life, concerned to become acquainted and get used to the idea that I have, am/were considering this. For instance. I had The Living Will drawn up in 2005. And only as I have learned that more is needed that I have added to it with this, "My considerations" -deliberating what would and would not go in rather than wrestling with my conscience, because my mind is made up. For instance. You will see blog/s on Security and Dialysis etc. Which will give even the most absent minded the hint that something went on their, and as I am known to such people there may be the potential for further trials.
In any order you want; but in this order for now:
Firstly, it has not been put in as it could be a point of legal contest. With its denial as some effort to prove incapacity.
Secondly, because I am relieved, pleased ...dare I say prided? -of the way that I was able to deal with it. Not giving them what they wanted; that is as they say ...'lowering oneself to their level'. I feel I dealt with things well, a learning experience. Skirmishes were few. Not least because I hold no qualm about speaking to The Police, politicians etc. As well as avoiding accusations of conspiracies without any real grounds of proof -bearing in mind the rule "check, double check and re-check.." that gives some clue as to how much proof would be needed and the amount of work, time energy etc. this entails.
No. If I take this on ever, it would be as a different issue, long before I declared my wish to vacate this world. I'm of the opinion that I won something by managing to leave the unit that they were trying to keep me at, as well as getting away from that doctor. This took time, though I had no problems with the first doctor I was under, nor until being put 'under' the problem doc either, yet was bundled out for raising concerns after being put 'under' him. (his words not mine).
While on the subject of which God puts them their, probably dependent on how they treat other people. (not just medically!!!). And so while on this, and considerations of God, whom said "thou shall not kill". I have two counts on this. One, it is the illness doing the killing and those which are responsible -for lack of research must own up to their part in it. For it isn't the doctors that gain anything from not having any-one to treat! Two, the concern was of love. And I consider that in many ways I am able to love others and even be loved by them better through not being a burden to them. Neither now or later on.
These are all mental considerations in my preparation. More physical ones are in trying to get my flat clean and tidy. To 'put my house in order'. As well as trying to exercise on a regular basis in the hopes as getting as much out of this life -which is become more like, and closer to a mere existence day by day- as can be achieved.
My final preparation is to try to achieve some kind of award or awatrds for something achievable. So that I am able to say to my maker. The life you gave me wasn't totally pointless, I achieved this. (therefore almost pointless is better than totally pointless!).
End of the 'religious' or God bit.
"Chance favours the prepared mind."
Though this well known saying is associated with physical combat. There was a point for a long time, associated with the reactions I initially got, and the stance of the media at that time. As well as the goings on within the medical organisation. Court cases that punished those who had helped their loved ones rather than the law itself admit fault that there is currently no proper proceedure in place to allow those who do not wish to remain, to leave this mortal coil. It expects a person to ask permission of another person or people, or body of people before being allowed! Despite the fact that no person has the right to give this permission as it would be close to if not the same as the "thou shall not kill" rule of The Lord. But,
I do agree that there must be provision to ensure that no-one is pursuading the person, and God forbid any bullying. However I do feel bullied by the illness itself as it stops me more and more in doing things I once took for granted. In fact taking them for granted as they were (ie. School lessons, playing football, writing stories etc. in English etc.) became a deterent because I never bothered to look at ways, alternative ways to keep them going once they stopped. (ie. Leaving school).
Not keeping fit was my biggest mistake. It is so hard, I am finding it impossible to get fit now with illness/es, no friends to support me etc. The fact that the childhood abuse by an Athletics coach obsessed with anything nude, including "Rugby Baths" and Greek heptathlons or other nude games etc. Put me right off fitness. As well as the fact that I wasn't really taught anything significant by school either. Perhaps all the stress meant I could not take the comparable little that I did get in, or remember it. But still that is not knowing as is not being taught appropriately, properly.
The preparations for any court case are that if I cannot communicate for myself what I wish in certain circumstances. That this is already communicated while I can. No-one can/should be force fed treatment. Anything that is got that isn't wanted becomes an unwelcome nuisance. And when it is being got just for the sake of getting it, it becomes a disgrace rather than a blessing. I keep myself going day after day only while the hope of achieving something worthwhile still exists. After that any hope would be false! I did notice the blogs of MSorenssen, and thank you, and all who have written kind words, I'd already read The Bible eventually finding required texts for exercises that I cannot now carry out to the full because my fitness levels are no longer sufficient. Were my circumstances very different I might've been, but I consider any such chance to be long gone now, and declare myself to be clinging to flickering embers of remaining true hope.
Every necessary, concievable argument is therefore considered and dealt with in the following text. I would add that I not be tripped up on matters that it would take a degree in law to understand -such as spelling which is evidence of poor schooling and poor school for it too takes its part in the illness as it's attitude generally prolonged the required suffering. It was required for their modes of ordered dealing are that not of empowerment for the sufferer but that of the self. To empower the sufferer theoptions mut be given without pressures or time limits, and the right to reconsider throughout the process and thereafter.
For when hope becomes false hope
Re: DNAR (Do Not Attempt Resuscitation), Living Will, My considerations: modes of treatment etc.
Original properly addressed:
Dear Dr. (name protected
Please find enclosed A legal copy of my Living Will. (withheld here: See a solicitor, if you wish to arrange one of these. And remember in this world anything can happen to any-one, anywhere and at any time in this universe)
I have written to help clarify matters regarding what I wish to occur in certain circumstances. These are as follows. Since my first draft attempt of this in August'10 to aid Advanced Care Plan. I have been able to add to my 'list of reasons'. I write this in order to aid practices, I felt that while I do not need further psychological investigation; and if you had felt I did it would've been only fair that I get the choice of whom I would be seeing, because of related issues of it taking time to build up trust etc. and I would be seeking those where this was built up previously.
I have in no way been coerced, or manipulated in arriving at my decisions. While I think we agreed that I do not need to see such person/s, it would be appropriate of me to provide evidence that I have very much, and quite thoroughly thought the matter/s through quite thoroughly. And hope this is enough to give people appropriately concerned, ie. Family any proof they may need to show that I have done this. And though it isn't everything, it is everything I want to say that I can think of over the many months, years that I have been considering it and preparing for any eventuality.
As my Living Will, which has more details, instructions etc. indicates. PLEASE DO NOT continue treatment should something arise to render me unable to communicate my wishes, in case of stroke, or any other serious 'complaint' that causes further, ongoing difficulty.
Also if something happens such as the continued muscle atrophy that gets to the stage where I am unable to walk unaided, such as requiring a wheelchair -or even approaching such a stage then I will be ending treatment.
Also if any other serious illness occurs that is without cure I wish to end treatment.
With Scenarios in mind. One came up again; 8.30 am. Monday 8th of November 2010. Having had another episode of "Diarrhoea"/ lose stool/overflow caused by excess piles causing a blockage and/or being on Antibiotics.. Having had the quite messy episode in hospital prior to going to dialysis ward, I informed the staff that I didn't quite reach the toilet and had only really water to 'c lean myself up with', though I'm trying not to name names. I can only commend Rosie and Gill whose behaviour was as it usually/always is quite exemplarory! Their kindness and helpfulness helped me overcome any awkward feelings of embarrassment etc. And I feel helped further by the fact that there wasn’t any argument and only helpfulness to my wish, need to go home and get cleaned up. Before I went I allowed the blood test. This now seems a mistake as I remember saying at the time "You will be phoning me later to tell me my potassium, phosphate is high", though in agreement, I thought I’d done all I could to reassure that I felt that extra dialysis would be excessive. I’d now like to be clearer, and say "Please don’t contact me, if my potassium is anything under 8.0."
I was told that the test came back to the unit in the afternoon. For some reason after 5pm. I’d got it into my head that I wouldn’t be being phoned, though I had had to go out earlier due to needing new clothes! I only half checked, but didn’t see the message light flashing. Anyway apparently after trying me three times, the nurse started going down the list of relatives. Can I state at this point that once a relative/named contact has been successfully contacted, and only leave an answer-phone message if your down to the last contact, because otherwise it risks bothering every-one when it is perfectly reasonable for the person successfully reached to pass on messages once they have investigated and know whether they need to or not. -Minimal impact!
My buzzer went, the Aunt having to drop whatever she was doing, and drive in potentially hostile plot night conditions complete with loud bangs and flashes of fireworks and potentially scared animals running across her path. She got here and luckily I can here the door buzzer from the bathroom -even with the music on; quite close to my ear. Unfortunately the phones ring is quieter and further away, I will look to see if I can rectify this.
Anyway, I had to calm the aunt down, who incidentally picked up MY phone -quite without asking- to phone back. The unit was engaged, so I got the chance to say I’d do it. (things between said Aunt and I were never great!). I eventually got through. Gill explained the doctor may phone because he has to cover himself as well. I said OK. and managed to joke "but tell him I’m 8 ft 56 -with tattoos!..."
He didn’t phone that night, nor the following day as I was in. He decided to phone at 8.30 am. on Monday morning -or some idiot did! "Idiot!" because what is the point? I’ve managed the best part of two days, I will be due to dialyse normally the very next day! It wasn’t the fact that he’d phoned in the morning that upset me, I had just got back from the bathroom, though had he phoned during.., I imagine more of the same pestering; this would not have been good at all! -for any-one.
Why do some people feel the need to argue when a patient says No to something? A lot of doctors/medical staff etc. think nothing better than to go on and on if they don’t get their own way. And worst of all it seems the only way to deal with it, to effectively get rid of them is to sound irritated -and significantly irritated, if not down right annoyed at that! It’s never been my wish to behave this way, why should I or any-one be pushed to it? Turbulent emotion isn’t conducive to good health. -Although, I know they say it does you good to get things off your chest. The constant repetitions of this sort of arguing isn’t conducive and what’s more from being in the frame of mind of a relaxing morning before having to go to the colorectoral clinic. To being so wound up that I felt I would not be able to rest until I wrote this latest potassium episode down. There’ll be no wonder now if my heart does stop! ("A known risk with high K." -even higher when blood pressure sours because you have to deal with pushy over zealous people who love nothing more than some incident to gossip about and say "oooh! How awful!" etc. (ref. "Games People play", temporarily forgot name of author). And doctors who seem to think that patients should be prisoners, and/or it somehow a detriment to them/their abilities if/when a patient even so much as politely refuses treatment. I have tried to point out before that persuasion/manipulation isn’t really suited to the medical profession; it is more a nuisance ploy of pesky sales people. A doctors people skills /aka. "bed-side manner" is more likely to be rated more highly by not trying to "sell" or push a patient to treatment. Unlike a salesperson who is desperate to get the sale. What does it matter to them? their not losing anything from a patient wishing to be left alone in Peace and quiet "Oh! glorious peace and quiet!!!". This has happened before in hospital with the nitwit who left his incompetent junior to mess up my inside as he clearly had no clue as to how to put in a line. He clearly had a guilty conscience as far as his lack of ability goes and he was so desperate to cover himself that he wanted me to have psychological evaluation. I was polite enough not to point out it wasn’t/isn’t me who needs it! I’ve had plenty having to put up with these.../such as these!
The arguments are much the same, and as they appear to take on a standard line/schema I probably don’t need to repeat them. The answers have had to be learned, with very little, if any help from any-one and so I am concerned for the potential for patients to be taken advantage of. On not just this issue but many, if not all of the situations that may face a renal patient.
Though I hope I won’t be pestered with it again, and I’m trying to let it go now. But memories such as "Heart stopping", reply "I’ve heard that so many times it is becoming a mantra!", this is where such things as self fulfilling prophecies occur. (simplest reference, A level Psychology...) I feel all would be helped if doctors would desist in eagerly, blindly showing off the doom and gloom aspects in what seems to hold with it a keenness to be proved right! I’m not a university, nor a debating club! I wish therefore that my choice be respected in the first instance. Nor do I have the slightest concern as to whether some-one whose never in their life experienced so much as a septic finger, tennis elbow or whatever agrees with me or not! I consider it possible that some would want hospital treatment. I feel most, if not all would rather be asked instead of ordered, argued with etc.
One of the most annoying things todate was that having gone through the issues before about infections requiring isolation, and deciding after the first attempt that it would be worse for me if I had an episode whilst travelling to or from or during Dialysis, and main unit being so far away that this increased the risk and therefore having decided not to bother that I had to go through this again. In such a way that I felt I was being made to jump through hoops and had he ‘won’ the argument would’ve expected me to comply with his wishes -to make him feel better. As is my experience now with these people he didn’t win, and realised from my tone that he wouldn’t. Or perhaps my tone gave him some satisfaction that I wasn’t the type of person he wanted to treat? Well anyway, it worked because it got rid of him and I allowed him his ego preserve by letting him end the call. If my name is derided on my file I shall consider this an extremely unfair character assassination by an over egotistical fool, because though I had to alter my tone to get my wishes through to him, I never once swore or even ‘insulted’ him in any way. Though I did have to demand that he think about what he was saying "You might not make it to tomorrow"
my reply "Well I won’t have to dialyse the will I!"
"chances are you will-" (where I interrupted)
I was also cross at the main unit in main city place threat. (a very long drive) As he assumed without asking as above. This more than anything else shows his lack of training! What’s more I’m not doing any more stool samples. Was never really comfortable with the idea, and both times it wasn’t reminded to fill in the form first as no-one obviously wants to do this after. Nor do I know who was supposed to do this. I told him it is piles causing blockage, and antibiotics (I said this thee times!) loosening stool.
In the first instance, I had tried to point out that I wouldn’t be going as I have an important appointment elsewhere that must not be missed; a third time! -Once due to that Leeds trip!
While I could’ve written this or the prior potassium in-patient incident as a complaint, I choose rather to use it merely to point out that dialysis isn’t always about simply turning up three times a week; there’s always things like this and worse hanging over ones head. His pointing out that ‘I might not make it to tomorrow’ hides the fact that I might not make it through dialysis or even the journey itself which has its own frustrations. My only concern now is in whether they use the potassium based enema, as I don’t remember this being discussed.
Palliative care: In the first draft this still wasn't clear. I now await to be contacted from some-one in the department (still). I wasn’t/am not going to allow whether I was to get it or not to affect any decision that I might make.
On this/any known subject: In case it hasn't been made clear before. I am/ will be refusing to see psychologist/s as has been requested, and will probably be pestered about in the future. Although I understand vaguely that this is due to formalised medical procedure; note: It is not my procedure, and by then I will be far far beyond the point of having had more than enough of medical procedure/s!!
My grounds, beliefs continue to be that no matter how many degrees or experience some-one has it is down right hypocrisy to sit up their in social class one -or somewhere near- and tell some-one, any-one whose suffered for any length of time that "life's worth living"... including using such things as "your unusual", "your being pessimistic" etc. as a basis to try to change some-ones mindset. Or as some "excuse" to over-rule the persons wishes.
1. degrees are more a case of what mankind gives mankind, I doubt the validity in the belief that it is somehow 'god given', and would further conclude that in of itself the attaining of such merely proves the person different rather than 'special' or 'superior'. Not superior, certainly when it comes to trying to tell some-one else how to live their live. In this respect we -individually only have this as a responsibility to oneself. i.e. I don't tell you how to go about your affairs; don’t therefore try telling, or otherwise unwontedly advising me how to conduct my own, as this would not be appreciated to say the least!
Only I know me well enough to make that decision. Any-one who gets on their pulpit/ high horse and tries to question whether I know myself well enough -does not know me well enough to know whether I know myself well enough to know well enough! Furthermore I won't be letting any-one in well enough to know me well enough in the entire medical profession!-+ to say whether I know myself well enough or not!!!
I am well aware that 'some people, my age have "normal" lives on dialysis'. Every-one has different circumstance, different dreams and abilities, and levels thereof etc. It is part of being individuals! And even go so far as to say have different definitions of what "normal" is.
Having thought long and hard, and speaking to several people, including the odd Counsellor or two. I came to the conclusion that of the dream that remains; once that is complete, or my condition deteriorates to the point where I am utterly incapable of working on it. -Namely; learning to program- then it will be time to 'return home' (a term I like!) AKA. End treatment, as there looks like little point in continuing while ill after that.
As I have said before, and I confirm that it is completely against my wishes to be probed on my integral beliefs, the opinions, feelings etc., I hold whether relevant or irrelevant to my case or the subject as a whole. And while I'm grateful to be informed of services etc. available I am also grateful/obliged when people don't try to push them with persistence etc. (And were it for me to say, I would go so far to say that this is a major cause of violence against staff, which I've seen so many posters about for the less stable temperament)
While I do not believe so many rules should be imposed on an individual by any kind of body of people, I do agree that family may feel some comfort from knowing that I left some demonstration of having thought about it all. Though my wish for complete privacy guides me to be brief on this. So, I haven't gone into much detail, and there are things I won't say. -as it should be for any self respecting individual! Despite this, the letter is long, as my own sense of thoroughness is important to me.
I do intend to show my genius with the eventual program/s that I plan to write. When I was well I did a couple of IQ and work related tests showing potential for this. One under particularly trying circumstances. And despite being failed by the education system. (The work test shows I was totally unsuited to the secondary modern I occasionally attended!
'List of reasons'.
1. The Ageing process. Even if I was relatively well, I would not wish to be in a position where I could not care for myself. As any-one that I might once have considered for friendship have decided that I'm surplus to requirements/ too much of a burden to be bothered with. And as I am not trusting enough to allow strangers to perform this task. And as I have no patience with even well meaning people getting things wrong. And as I have little time for correcting. And as this is strong feeling that I shouldn't have to put up with such things rather than just vague nausea I would choose the get out clause believing it pointless to keep me going just for the sake of keeping me going. To those who say "where there's life there's hope!" and cling to this as some kind of masquerade that makes life better, a sort of one size fits all preaching. I must point out that in the clear sighted assessment of ones own life. And in coming to the realisation that any glimmer of hope that may, or may not remain shows itself to be false hope, and even a forced grab at an entity which long since found itself 'running for the door'.
2. I have no dependents, nor any intention of obtaining any. This would be a reason to continue. And my main reasons for not pursuing this avenue now are (a) it seems unfair to make any-one have to look after me. As some sort of take or leave package deal. (b) I do not believe in "panic buying", a sort of get any-one on the grounds that they will help; even though home-haemo-d. would be appealing. I feel that would be a mis-use of a person who may otherwise be free to find more genuine love/motion elsewhere. And as mentioned those of whom where this genuineness may have existed have decided I am not worth the bother.
3. The BS. about "You're still young, you have your life ahead of you." A life complicated by trips to hospital, feeling unwell, invasive operations and procedures., having to put up with varying types of people that I wouldn't normally - a top reason I found for the relief of getting out, leaving school! Why would I want all that again? -I most certainly don't!
On top of this it is a 'life' of'; -more appropriate to say EXISTENCE, it is an existence of continuing decay. I already feel that I have the capabilities more suited to an old man rather than those more appropriate to my age. (35 at time of writing)
It is an existence of limited opportunity. Where I will over time be less and less able to take part in the things I would've wished to do. Already pressured to let go of any real opportunity for many of my dreams to come true. Often I feel I delude myself on purpose that these things are possible just to find motivation enough to keep going that little bit longer. This though is becoming more and more a chore rather than a moment to indulge myself in.
Having mentioned while at Bradford that any operation on my throat may render any future hope of singing as completely out. I was scrutinised somewhat; this is not suitable to me. I should not have to point out to professionals that 'dreams' or specific wishes and hopes for a particular future are what keep many going in this far from perfect world. And just because it is still deemed unrealistic by doctors doesn't, most certainly shouldn't mean that it should not be dreamed!
Furthermore when doctors are pushing a patient for a procedure making it sound as though nothing will go wrong. And sounding, looking so certain of this 'fact', yet are the first to use the following disclaimer when in fact things go wrong. "Well, we're not prophets", therefore how dare they say anything to contradict a persons wishes for a more pleasant future, even if that places demands on life to be totally and utterly free from illness, with a full clean bill of health! - (why shouldn’t statues cry and Angels sing? What is the dire medical urge to prove such things wrong and maintain omnipotent control on anything resembling the pursuance of ‘life’?)
Stress, and annoyances that lead to more of the same incongruousness in this individuals pursuance of, or former pursuance of life as the case may be. Activities and chores becoming harder to do. Not being ones own boss regarding supposedly having to watch potassium levels and water intake etc. Bearing in mind an inability or innate refusal to take so many orders, that shouldn't be orders in the first place. If food companies stopped packing such things in, and if fdialysers let alone a persons capacity to pass their own urine -where this is not the issue for that particular patient, instead of forcing every-one down to the lowest common denominator then people would suffer less at the hands of their so called 'carers'.
I may've once found it easier to keep going with a fitness programme, while things outside renal got in the way. Renal did not help any at all! Had I been enabled to, instead of my body having this "invasion of the p**s takers!" and not really realising the importance, or being able to say something against the onslaught of 'doctors'/nurses extreme 'authority' as much given by being myself kept in darkness as to the consequences of being obliged to give this blind trust. An offering which has proved largely fruitless it has to be said.
It was once said "oh! Things are much better these days..." as though this was as far as we could go, and so should put up with all the frailties and faults that still exist. But surely, if it is good that progress was made in the first place, surely it would be good were this to be continued. Yet, overzealous nurses work to make a customer dry and dehydrate them, stopping the urine in the process. This itself would probably cause renal failure, and I would guess further deteriorates the condition of the already poorly person. Hence the inability to bring anything significant back. I have no intention of living this way once I am content that the rest of my 'house' is in order. I again note my annoyance at those who seem to stop at nothing to force the vulnerable into doing their way of thinking. I said from the start 'I don't want a transplant', and I will not be manipulated into it at the annoyance and frustrations of not being able to pass water (i.e. "pee."). The major annoyance is knowing this could have been prevented! Being noteworthy that often there is no gain without pain. It may therefore necessary to die as a stance against such manipulations that often amount to bullying, or rely on the ignorance/s of the patient. As the philosophy goes: "We’re in this life to learn." then surely patients should be taught everything possible including consequences before agreeing to a procedure. The other view being ‘how will the learning take place if such things aren’t experiences’ while punitive may appeal to some. Not I. Usually it appeals to those who don’t have to undergo it. Or those who seem to believe they have something belligerent and must prove themselves to some-one or something. This often includes a camaraderie of which I have no interest.
As far as a transplant goes. Apart from ruining my dream of the type where Statues cry and Angels sing for me. I would not buy a phone on the basis that many accept such a drastic thing! If it doesn’t work you can’t take it back! Worse all the damage done etc. I won’t be discussing this further. After all what is there to discuss? Immune system in such a strangle hold that patients go down with everything, higher risk of more critical, terminal illnesses such as the big c. etc. Uncertainties; failure rate etc. I have spoke to several people who’ve been kind enough to tell it how it is, rather than place a false halo round it or look with nagging persistence on some ’bright side’ ideal. OK. So it allows some freedom from dialysis. Whereas Angels crying etc. allows much freedom from it. And both seem to have about as much chance of happening as each other!!
I won’t be putting myself in the situation where employers don’t want me, and DSS are able to question such departures and order more form filling. I believe I have discussed this and more in prior letters. Along with abandonment of so called ‘friends’ and my realisation that their so called friendship contained certain conditions that don’t suit me.
As far as going back to Leeds is concerned. No Thanks. Apart from the distance to travel, to get there, and to find a half decent toilet once there! There is the fact that by the time it is a case of this or end treatment. I will be ending treatment. Leeds was alright while the flickering embers that still held hope of life were still warm, but by now they’re quite cold and I don’t see the point of prolonging the agony. -Not even to please some supposed "messiah"/Saviour who seems to value suffering even more than living; as though in itself were worth the existence. I don’t see this when suffering of itself will not save the soul. But that is something else I won’t be discussing here. Not least because I feel faith is quite a private matter. Suffice to say my own let me down -and were to do so anyway, despite the best efforts of some of the lesser reputed staff.
Also: While alive: Should I not be in attendance for dialysis. I request that under no circumstances that my home be broken into. If I am able to I fully expect to always make contact ASAP in case of non-attendance. But I cannot account in advance for every situation. I hereby ask therefore that should my mother (next of kin) not be contact-able, (as sometimes she forgets to put the machine on) that you go down the list of contacts where the next available will keep trying on your behalf until she becomes available. Alternatively, the landlord is contactable.
(NB: There are two Brunel Court's with separate Officers)'...Housing Officer (currently. Jackie or Rachel) for Brunel Court, HALIFAX. ...(01484 431666), I am making instruction for her to first contact a relative to make sure no other key can be obtained, before herself making the journey) NB: As I am preferring to not be resuscitated it would not be suitable for myself to leave the debt for repairs to loved ones/relatives. In the same vain, I would not wish to incur this cost in case of false alarm, or the consequent messing about with repairs etc.
While on the subject of dealing with nosey parkers who try to force people to live at all costs, I realise the question may come up about why I don't and never did nor ever will want a transplant. I believe you have my reasons from an earlier letter. I thought of another reason in the last couple of days which I will put here: There is the thought that weakened immune systems are a carrier ground for all these modern age bugs that are breading in those people that don't have the full capacity to destroy them at source. They therefore become strong in the host before being spread at which point they are strong enough to effect and attack more powerful immune systems. I have no wish to be party to this "Armageddon" -as Grandma RIP. might've called it. At what I actually consider to be a wish to continue that would be of negative motives, such as greed, selfishness -(due not least to knowing this.)- and the reflex to which amounts to being scared of not living/ the unknown etc.
Re. Forced Mechanical Weight removal: I believe I've mentioned before though I cannot remember writing it, though I am working on a longer article to send you. Having seen and to a point lived the consequences of this practice that as a result I consider barbaric, I would rather end life/treatment than continue it unable to walk around. I consider my independence is vital to me.
Science typically, eventually finds a solution to one thing that's never as good or as effective as the innate/natural. And invariable causes many negative side issues which tend to get clobbered on in the same clumsy narrow minded ways as before. Therefore do not try to tell me that 'science is some kind of miracle', it's merely an Art -with numbers.
Finally, there will always be those who will say they don't agree with or even go as far to say they can't conscience the decision I have made. Luckily for them they don't have to, but if it ever faces them, I wish them luck in whatever decision they make as individuals. This does not extend to their interfering with my decision about me which has not been arrived at easily. I also have something to say for the persistent arguers. While efforts have been attempted to give enough information to state why I don't want the alternatives, aside from an expected panic if/when the time comes, I feel some success has been achieved in explaining my that all but overnight-home-haemodialysis would not be suitable, successful for me. I will now attempt to explain to people why there arguments weren't welcome and aren't helpful. For one thing while I'm stood around politely putting up with other peoples half baked, un-requited and subjective opinions I might have had time to look to do more productive things. Beside this carry-on that tends to usually be less than comforting is by definition no way to go about trying to tell me life's worth living -simultaneously reminding me of one reason why it is less than that. I'm sick of people telling me how to live my life! I often notice how most, if not all who take part in this activity tend to equate winning the argument with altering the person. I take great delight in the dismayed reaction of some-one who convinces themselves they've won convincingly only to find their efforts have been in vain. It makes great comedy. -
- But the more serious point came to allow me to provide examples of why their 'sport' is doing them more good than any-one whose thought it through long and hard but come up with a different decision more suited to their individual and private set of circumstances. (And while on the point, A Warning: Any attempt to prize out that which is deemed private shall be met with the contempt such bullying deserves!)
The incident that helped me think of how to describe it for the unprepared is. After I handed in the initial draft for the Renal Specialist (Dr. Garthwaite), I met a patient from the unit while waiting (2.5 hrs. approx. for transport home - a long day!) I saw a patient that had recently moved from my D.-shift. I thought it would be a good chance to catch up, but he tried to find out why I don't want a transplant. As I have many reasons, I tend these days to just pick one at random and hope they won't go on about it!
On this particular occasion, I not only picked the wrong one, I said it too casually and it came out wrong. It resulted in his letting me know how bad he felt that his need for a pancreas has to come from a dead person as the human body is only made up of one. As I know him, and that his circumstances fit having one and are very different to my own. For one thing people actually like him and he likes them. (An aside I couldn't resist that has some truth), the actual main reason is he has dependent/s, and still has that zest to find work. By comparison I've kept it so that I have no dependents, and I feel that I've burnt out somewhat. Also it seems I've studied the situation more deeply due to my curious nature, a personal hatred of ignorance -though I concede it can sometimes feel blissful. ... while no doctor or any-one had bothered to tell him that the advice is to consider it a holiday from dialysis and not a cure. I look back and think had I known I would go through all this, I don't think I would've said yes to treatment. For every ounce of good time there has been a ton of struggle. For every well wisher who feels they can't do anything anyway there is about a dozen who believe that such people as the ill and infirm should be in concentration camps as they/we take all the bloody precious economies funds! And it's true because if it wasn't for poorly people they wouldn't have any need to pay doctors/nurses all that money! I heard a couple of Nazi looking youths as they walked past "they get transport..." -we used to be a country who cared enough to fight against this money first people after ideologies, but where's it going? And so I've side tracked to another reason for wanting to opt out. Not being a burden on the system. And definitely not wanting anything to do with such a people hating culture as seems to be seeking resurgence. Of which, believe it or not, I have also come across in hospitals to varying degrees.
Anyway, as far as the conversation went. I reassured him as best I could by relating how my mother was the first to offer. I refused on the grounds she might need it someday. As it happens the troubles relating to age mainly that she has now would make her situation worse. I concluded if I were to choose I would not have such from a live person. This came after I mis-said my answer. I won't repeat that, but what I meant to say was: Why should some-one have to die to prolong my rotten existence? I was trying to avoid saying things to scare him, make him worry or even put him off for his sake.
Not only is there the risks of failure, there are also serious side effects. It is a lottery, and as most will accept people don't usually win much in lotteries.
The answer is better expressed as a scenario. Suppose two people go on the list at about the same time, have similar scores so a match that would suit one would just about suit the other in most cases. But the first is like me. Doesn't want one, say for the reasons I've given above, while the other does. A match is found, while weighing up whose most suited they see that the first person just edges. They contact him and despite his better judgement has caved to all the external pressures, the dread of ridicule/shock on peoples stupid faces, beliefs of divine punishments even. Etc. So he says yes. He leads a miserable life, gets depressed due to still having no friends as things already became too bitter between them. His family, though somehow believing they'll live forever die off one by one leaving him alone in the hostel where they put him because as per my motto they "cannot cope!" -Gets some psychotic illness, or it gets worse as it is the type to progress with age or due to having to constantly defend himself in atypically hostile environment, by the time the implant dies he's lost his mind anyway. And certainly in my point of view the muscle atrophy, weakness etc. isn't getting any better and if I cannot get about under my own steam, I don't want to even bother! What happens to the second person in the scenario? He's forgotten, no similar match is ever found, he spends his life waiting until dialysis tires him out as he never got home haemo. either because he'd decided to give his child the spare room, and she wasn't old enough to be taught how to help him.
At such a point that I may wish to end treatment. I will provide written notification at the time. I would expect to be in a worse condition, situation than today but reserve the right nonetheless to end merely in a manner that simply states so. And whether a further/final reason is stated in the letter or not I do not expect this to be queried or myself to be sought after to either appease some ‘do gooder’ or even train some ‘whipper snapper’ in the finer art of dealing with either ‘an awkward patient’ or the situation. I will be by that time should it occur this way to be ending with the minimum of fuss and the maximum of dignity. I will more likely than not hand the staff the particular letter should I wish to start palliative proceedings.
While I haven't covered everything there is, I feel I've covered enough, bearing in mind I would resent the thought of feeling I 'had' to answer to any body. Though I think it warrants some kind of honorary degree in something like psychology, philosophy or something except I don't know where to send it. (some 4500+ words, bibliography available on request -though much is from experience and conversation therefore not easily reference-able)
Thank You for your co-operation in this matter. I hope this demonstrates my thoroughness well enough to not receive the sort of "Spanish Inquisition" type pestering that has gone on with things in the past. As I would not consider such people worthy of knowing anything anyway. Even if they've had renal problems themselves for many years, I would consider them expert only in their own private situation, and furthermore I do not want knowledge of their problems to be added to my own concerns of what can happen!
Have I the right?
Does an Individual have the right to make their own life and death decision?
some Further reading for renal patients
- Why I refused Transplantation
Despite the NHS debt being so severe, there is much money in operations for doctors. A Clinical error may be an honest mistake, but who knows how much more funding it will lead to?
- was judas forgiven?
I came across a psychic Master; who showed me that mankind doesn't necessarily have all the right answers. ...And I'm no exception. Well worth reading and decide for yourself who is right.
- Whose choice is pallitive care?
An old man says
- health and fitness with dialysis
Awareness is key to success. For Instance, many health, weight gain etc. products contain potassium, a problem for most dialysis patients because this builds up and can be deadly in high doses.
- Scrutiny & Security and Dialysis
My genuine experiences of a rogue unit. Despite trying to leave it took two years to get out. Then I ended up somewhere potentially as bad. I am now free and live -well enough- to tell the tale.
- Coping with dialysis: Secrets revealed!
Facing dialysis for the first time can be hard. The first few weeks are the hardest. Patients, relatives and carers alike will find some new insights here. A demistifyer for renal new comers.