And paranoia sets in ....

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Here I sit - not really knowing how to speak to friends without alarming them - so I am about to take the liberty to talk to you.  Bless you for that generous largess which Tennessee Williams so potently described as 'the kindness of strangers'.  Please believe me when I say that your generosity in this regard is mightily appreciated.

I have an endoscopy next Monday.  Indeed the hosptial called to confirm my appointment today.  (I have to - in a sense - laugh at this as thrice I called them to confirm myself and waited the first time an hour and a half on hold, the second time for an hour with the same annoying message plummeting in my ear and the third time for just under the last's duration after which I hung up in total frustration.  When I asked the voice on the end of today's call why that that should have been the case I was told: 'Mondays are busy days'.  I didn't go into the fact that I called only once of a Monday.  I thought it best to spare my breath to cool my porridge.  As it was I had to call a different branch of that same hospital to get an employee in a different department to confirm on my behalf via email.  That was most kind of them.)  As it is my appointment STILL stands for next Monday at 1.20 pm and the voice confirmed that the appointment had been confirmed.

I so wish it was earlier, like tomorrow.  I have already reached a state of panic.  At times I am frozen stiff and at other points I find myself pacing up and down in no definitive space.  When I had originally asked for this at the GP's surgery the doctor in question had said:  'Oh, no, no.  Not you.'.  I then paid good money - and a lot of it - to see both an esteemed GI specialist and an ENT surgeon.  Both were understanding of my wanting an endoscopy, although the GI specialist made it clear that he didn't think I REALLY needed it.  'I suppose', he began.  Although, that said, he would be happy to oblidge me for a mere £1,500.  Having already spent £648 for those two appointments I am most grateful to the NHS for allowing me this relative interim luxury - even if it has been on an eight week loop.  I am, I promise, grateful (if most certainly petrified).  (Why, oh why do I want to cry 'Mummy'!  Absurd at my age I realise.)  

I read a note on one board of someone who was diagnosed with oesophageal cancer 'with only hiccups, no pain, no food sticking in the throat'.  Truth told:  That has frightened me OUT of my wits.  Silent burps/hiccups were my initial reporting symptom.   Oh, that and then one positive element on a peptest (so LPR).  

I now walk down the street feeling for all the world like a witless ghost.  I am invisable to all but my brain - or more specifically my imagination.  How I wish I could disappear in her presence.  She - or it - contorts all in (at least my) sight.  Oh, I fight with her/it (I promise) but all too frequently I lose that particular tug of war.  My mental rapier has been snapped apart.  I am well and truly pulled asunder.

You'll laugh I'm sure, but I have been practicing swallowing.  I HAVE.  I have become paranoid about that too.  (I have read here that the endoscope is NOT 'the size of a pen' - as the GI specialist told me - but 'a bloody great hose' as one person on another forum on this generous board put it.  Please know that within this very hour I was eating some air popped popcorn only because I wanted to see how many I could shove down in what may be my very compromised situation.  I managed three and a half popped kernals.  I would have said four but there had to be SOME chewing involved just to wet the round as t'were.  I felt it, of course, but it did - even I had to admit - GO down.  And although I don't eat bread as a rule - haven't for a long, long time - I found myself going out to the local convenience the other night expressly to buy a baggette.  ME of ALL people!  I then ate half the silly thing that evening - and the other half dutifully the next morning MERELY to convince myself that IT too wouldn't get stuck.  (It was actually much smoother than the popcorn!)  'Why didn't you go for a barium x ray?', I ask myself.  Then at least I would know how big a hiatus hernia I might have or how substantial that stricture might actually BE!!  Oh,and I would glow in the dark.  (Not so easy to hide then, huh.)    

Anxiety is, I fear, getting the better part of me at times.  (I am writing this really as an exercise for/to myself - to simply 'get it out'.)  Yesterday I succeeded in giving myself a phenomenal case of gas by blatantly twisting my intestinal insides together with my best boy-scout knot of stress.  I even forged a kind of diarreah for my sins.  I did take an Imodium this am and happily have stayed toilet free all day.  I wish the fear could be flushed (or at least stuffed) as easily.  I lay on the floor and examine my stomach for any deadly lumps or bumps.  I just felt around my throat and imagined it was burning.  I then took my temperature.  It was normal.  Last night I went to bed at 9.30 pm - it was the least I could do in an effort to contain myself - and had no problem falling asleep but then woke up at 1.30 am with my heart racing - pacing - pounding like nobody's business - and my insides all achurn. My bed clothes wereI thought slightly dampened and of course I knew full well that I it had little to do with my climate of my bedroom on that the longest night of what I imagine to be my last year.  That is in fact when I got up - as my belly painfully instructed - and discovered my oh, so very loose stool.  (Sorry if that is in any way indecorous.  I do apologise most humbly.)  I went back to bed only to dwell for a bit more on my (uncertain) dilemna and only succeeded in forcing myself to breathe deeply - and hold it for a count of forty - finally managing to get some further shut-eye until 5.10 am.  

I confess that I feel hermtically sealed by this situation and don't know really where to turn.  I have reviewed my will (truly I have - more than once) and imagine myself saying - in a very small and stifingly white hosptial anti-room that I want no treatment;  I will settle my affairs, I will say, 'Say my goodbyes and then take a long swim.  It has, after all been a good life - all 58 years of it - and I have always liked to swim.)  Of course I don't want to if I really isn't necessary ....  but in my head somehow it is ... or at least I'm preparing myself for that reality.  

You see, my friends, I am lost.  Somehow I have discovered Shakespeare's 'second childishness' within myself.  It now lives, it breathes 'sans eyes,sans teeth, sans taste .... sans everything'.  Even now - typing that quote - my mouth has become entirely arid.  I have pushed myself out unto my own private Sahara.  I am, I fear, adrift.  

I realise you will probably think this all a trifle silly .... I confess it is .... but still it is real to me just now.  I HAVE I promise been trying to keep myself busy.  I have been taking myself out every evening for these past six weeks trying to keep myself entertained.  Last night was the first one I had off.  Tomorrow night I will be seeing Jonas Kaufmann sing Manon Lescaut for a second time - and of course Manon will die in the end on that Louisana swamp won't she.  How comforting', I'll think.  'I do understand your plight, Manon.  I promise.'  Somehow I succeed in fooling myself on those occasions that I am filled with joy.  I applaud with the best of them.  Then, of course, I sit on that bus home and stare out of the window.  

Those ghosts:  They will keep come flooding back.  They can swim it seems even better than I.  

Thank you for so listening.  Even more thank you for your kind understanding.  That is, I promise, a most joyous restorative.  

I now I try to swallow once more.

Bless you for ALL.    

 

1 like, 15 replies

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15 Replies

  • Posted

    I have had 2 endoscopys and a colonoscopy in the past 2 months. My procedure is on Friday 27th and I will be having....here goes....a laparoscopic repair of hiatus hernia incorporating anti reflux procedure/symmetrical fundoplication. Oh yes and last Wednesday I had to have an ultra scan to make sure I haven't got Gaul stones and then a wonderful barium swallow....delicious !!!! I watched the video later on and saw my 10cm hernia and watched the barium slide down my throat and bounce back into my neck..I have lived with this for over 3 years but the coughing and vomiting for over 15 years...Friday is my D day yipeeee

     

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  • Posted

    Dear Rochelle,

    I know who I will be praying for on Friday.

    You so deserve that extra spoonful of happiness to make certain those surgeries go down as they well and truly should.

    You deserve NO LESS.

    Bless you, Rochelle.   

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  • Posted

    You are just one year older than me and you are obviously an educated and intelligent person (even if a trifle anxious).  You know that 58 is no age at all to be thinking about wills and dying. If the doctor had thought you had a serious illness surely he would have arranged for you to urgently have these tests rather than fobbing you off or leaving you to go privately?  Will you have anyone to go to the hospital with you?
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  • Posted

    That is so sweet of you, Carmel.  Thank you.  

    I am, I think, more than a trifle anxious .... but am doing my best to restrain myself.  As Hedda Gabler says to Eilert Lovborg when she hands him the General's (her father's) gun:  'Do it beautifully'.  smile

    I will go on my own I think.  It may well be best.  As it is I don't want the sedation.  I know I have foraminal stenosis and I wish to be fully awake to protect my neck.

    Again, huge thanks, Carmel.  

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    • Posted

      Well meunier I know we have never met but you are an intelligent, nice soft person and you can cope but I know what it is like to be petrified and worried and feel out of control and it is awful to wait when you would rather find it now and at least know what you are dealing with. I had arranged to go for this test two weeks ago and then because I felt better I cancelled it. I figured that the doctor can give me proton pump inhibitors and I am a bad traveller and not good in croweded places etc and the hospital is a long way away. The journey and everything was making me a nervous wreck even without the actual thing itself, and I have nobody to go with me. So if you do have someone who cares and has time to go with you maybe that is a good idea. A trouble shared and all that.  I was going to go with the transport service as I dont drive.  And why have a death wish?  Life has beautiful moments. Even those who are ill can enjoy the simple things in life whether it is sharing a joke with  a friend, eating a cream cake,  watching a good film, listening to beautiful music.  Things you can do every day no matter what. What things do you enjoy in life on a day to day basis?  Do you work? Do you have hobbies?
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  • Posted

    Bless you for your kind words, Carmel.  I am sorry that you were not able to travel to have your endoscopy.  That must at times be a concern for you now.  The fact that they got an appointment for you in two weeks (assuming it was on the NHS) must have meant that your doctors had some genuine urgent concern - or were you doing this under private cover which is always more rapid in ANY event?  Are you ever haunted now by any of those 'what if'' moments?  Stress can I know play a substantial feature not only in these diseases but in our everyday lives.  We must do all that is in our power to shelter from such ravages where such, of course, is in our power to avoid.  (A certain amount of course is de rigueur as it is.) 

    I'm not really worried about going it alone vis a vis this exploratory examination.  The hospital is only a short bus ride away from me and as I am not intending to have sedation I will be able to drop in and out fairly rapidly.  The actual event itself - as I understand it - is only between five and fifteen minutes.  (The admin takes longer.)  I won't eat anything between 6.00 pm on Sunday and the appointment at 1.20 pmon Monday thereby allowing them as clear a view as possible.  I should be able thereafter to eat (he says hopefully) by 3.00 pm ... and I know I will be much appreciated.)    

    I am, Carmel, one of those lucky people who actually do what they love and have done for most of my wonderfully varied life.  Indeed the small arts charity I run I had the privilege to co-found aside with the wonderful Dame Dorothy Tutin in 1997.  My interests / hobbies are largely based within that area of delight ... which is - as it has always been -  happily convenient.  

    I don't think - well, hope - that I don't have a death WISH.  It is only that I am - have always been - and still am - largely satisfied with my lot.  (As my mother used to say 'the goal is to end up on the better side of the compromise.'  I can - hand on heart - actually say that I have at least touched on everything that I ever aspired to do - and then some - and have been graced in being able to make a positive impact in the lives of a goodly many along the way. That is I think a receipe for a happy history; a solid achievement.  I pray that it has been the same for your own good self.  

    Bless you, Carmel,for your kind response.  As ever, it is much appreciated.

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    • Posted

      Hi.  The doctors did not rush an test for me,  they did not even suggest it for ages, this has been going on altogether for a year. Then when it did come up it was a by the way suggestion where it was up to me and it took months for it to come through.  My stomach problems are totally fine at times. I can get weeks where there is no problem. Serious things do not work that way.  Cancer would hurt continually not go away for af few weeks and then come back.

      Are you well enough to work now? Do you work full time?  Do you have specific hobbies? You say aboutg your wonderful charity work but maybe there is somethng else too? I enjoy cooking but not at the moment.Bless you too and a happy quick resolution for you.

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  • Posted

    Hi Meunier.  We spoke a while back.  Really sorry to see this post from you as it seems you are still struggling to find a resolution.

    I know everyone thinks differently on this subject, but can you think the hospital tests as an opportunity to confirm what you may or may not have?  I convinced myself I had all sorts of things wrong with me just by my symptons alone.  At least by having these tests you will be a step closer to knowing exactly what's wrong.  Then at least you may be able to start dealing with the issue with appropriate action/medication.  I guess I'm trying to say look at things in a more positive light (I know that's hard right now!).

    By the way, I don't think anything you've said is a trifle silly!  It sounds very much like anxiety and stress talking!

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    • Posted

      Sounds like anxiety to me too. And it is always easier to know what is what rather than let imagination and fear run riot.
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  • Posted

    It is with regret that I must inform you ...

     that my endoscopy showed that I was - from a upper GI perspective in any regard ... PERFECTLY NORMAL.

    The report by the very nice oriental doctor found that the visualization was GOOD, the tolerance was GOOD, the complications were NONE as was the CO-MORBIDITY.  The endoscopic diagnosis was 'Normal Study' and even the 'CLO test for Helicobacter Pylori' was negative.  Under recommendations it states:  'No sinister findings'.  

    All this was put on the published report.

    There wasn't even a hiatus hernia.

    (The doctor said the pepsin result (only one showed significant pepsin was 'really bizarre'.)

    It seems - at least from an upper GI perspective - I am going to be around for a bit longer.  (That said, it still doesn't explain the gas in the upper tract - though I don't think I'm going to even worry about that ANY MORE .... I'VE DONE WITH THE WORRYING NOW AND THE UNDUE READING OF THE INTERNET - AT LEAST FOR A TIME.)   I have recently had some unintentional weight loss - about five pounds in all - but that could be - as my sister said - from anxiety ... which is especially understandable when you make a request for a test to your GP in April (13.4.14 to be exact) and get the test performed on 29.6.14.  Still I know now what THIS ISN'T - e.g., esophageal or stomach cancer.  Moreover - from my earlier visit to the ENT surgeon (private) in April I also learned that there was no sign of cancer of the larynx.  'You're so far from that' he said 'as to not even be suggested'.

      

    THAT ALL SAID .... going to the bloody thing (and I must say the endoscopy is one pleasure I hope can be indefinitely postponed in the future) I felt as if I was on my way to my own private execution.  As I sat waiting for the doctor I imagined a file of guns in front of me - and heightened violins. The spray does, it's true sting just a little and tastes like rotten bananas - and it took five - count them five - times before I would actually swallow that endearing hose which was - in the end - most very kind to me.

    Just wanted to report the reality - in contradiction to my imaginings.  Those farewell notes will now have to stay in draft on the computer for at least a bit longer.  

    Bless you all for your support.  

     

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  • Posted

    Oh, and I just wanted to add that coming out of the endoscopy - with my happy report in hand - I decided 'screw this' and I went with my friend for a luncheon - where I ate a big box of sushi and a spicy chicken and rice special.  (I hadn't eaten for almost a day as it was ... )  I know that is VERY BAD LPR therapy ... but you know what .... it didn't bother me AT ALL .... I've been quite happy since ... and fundamentally at that point I didn't care.  I have a feeling there is so much scaremongering .... that THAT has become part of the LPR disease itself!!!

    Another thing .... part of the reason I was SO, SO very anxious .... was because I had read a 2012 Harvard study which showed the direct connection between B12 injections and esophogeal and stomach cancer.  This had haunted me. WHY?  Well because that same year I was in a certain London hospital when they told me that I had three to six months to live because my brain stem was diseased.  I went for a private MRI of my brain and brainstem while waiting to be urgently elevated on the NHS and the reviewing radiologist asked to see me.  I went and he said what he saw and what was in their report just didn't add up.  I later saw the head neurologist at the partent hospital and she was SO angry at their fundamental inadequacy.  She told me I could have shut down the hospital.  She was the one who discovered I had a B12 deficiency.  Problem was this had been going on so long I was truly suffering with diffuse numbess and other significant symptoms.  An actress with whom I had worked on a project in Malta with talked to an internist about it and she said that it could be a result of a parastical infection.  I went to my GP surgery.  The GP said - and I quote - 'no, no, no.'  I went immediately to the Hosptial for Tropical Diseases and was immediately admitted and treated for Giardia.  The consultant said due to my super low B12 I had approximately three weeks to live.  (I was very much struggling to walk at that point)  It took months of injecting myself with large doses of both hydroxo-colbalamin and methylcobalamin to get back a regular neural function window ... and i was one of the lucky ones.  Truly.  

    You can SEE why I went into emotional overdrive when I read that Harvard report.  By rights that SHOULD have been me.  Game over.  

    Advice .... we all need to get a life ... I mean our own life ... and let some of these GPs - the so-called authorities - sort themselves out.  Once the latter is achieved we might well have a much happier ... and, who knows, perhaps healthier society.

     

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  • Posted

    That's the idea if you have had significant doses as I required to basically stay alive from a neural - or any other - standpoint.  You can search the article yourself.  It has been hugely quoted. Look for 'B12 injections and stomach and esophageal cancer'  You will I promise find it .... or a version thereof.  Sorry.  I would put a link but I know we are not allowed to on this forum. 
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