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Kitkat's KK Blog

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Kitkat
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Kitkat's KK Blog

Post by Kitkat on Sat 26 Mar 2011, 00:18

Where to start?    What a Face
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Cheers!

Post by Stardust on Tue 26 Apr 2011, 13:38

At the beginning of course.



A wee dram to celebrate the inauguration of your new blog and inspire you, Kit-Kat. alien


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Re: Kitkat's KK Blog

Post by Kitkat on Tue 26 Apr 2011, 18:37

Well ... got the 'all clear' today. No new tumours anywhere and no spread to the bone. No more appointments for 6 months. :bounce: I suppose that's as good a start as any. flower
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Re: Kitkat's KK Blog

Post by Feather on Wed 27 Apr 2011, 00:04



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Re: Kitkat's KK Blog

Post by Stardust on Wed 27 Apr 2011, 07:54

Another reason to raise our glasses then.


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Re: Kitkat's KK Blog

Post by Kitkat on Sat 06 Aug 2011, 18:34

The view from my window this morning. There was a wedding in the church across the road where I live. I'm sure I wouldn't lose money on betting that either the bride or groom or both had something to do with London Transport. The wedding car was a black taxi all decorated up, a few more black cabs parked inside in the grounds and sat outside on the road was one of those old double-decker buses - a real antique just like the one in the Cliff Richard film 'Summer Holiday', the transport for most of the wedding guests, it was causing chaos with the traffic outside as it was parked quite dangerously on the bend in the road.
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Re: Kitkat's KK Blog

Post by Stardust on Mon 08 Aug 2011, 14:07

That would have spoiled their wedding day, if there'd been an accident.

Black cab driver marries bus driver; they live happily ever after and have lots of little mini cabs running around.



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Re: Kitkat's KK Blog

Post by Kitkat on Mon 08 Aug 2011, 23:50

@Stardust wrote:they live happily ever after

Well not quite ... their happy timetable starts going down the tube when the kids start playing on the wrong side of the tracks and end up going off the rails.
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Re: Kitkat's KK Blog

Post by Stardust on Tue 09 Aug 2011, 09:05

Oops, sounds like experience talking.
Perhaps people are happier 'living in sin', then there's less pressure and they don't feel trapped?
Could be a good debate in there...


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Re: Kitkat's KK Blog

Post by Kitkat on Tue 09 Aug 2011, 13:30

@Stardust wrote:Oops, sounds like experience talking.

Not really, Stardust. I was trying to be humorous there ... keeping in line with the 'London Transport' theme (tube? timetable? tracks? .... rails? ). geek Oh well ....
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Re: Kitkat's KK Blog

Post by Stardust on Wed 10 Aug 2011, 09:59

Hey, I hadn't missed that at all, KitKat, in fact I was wide-eyed in admiration for your skill.
Sorry I didn't say so, but I'm saying it now. The humour was much appreciated.
lol! flower


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Re: Kitkat's KK Blog

Post by Kitkat on Sun 23 Oct 2011, 18:36

Still on the London Transport theme ... had a very enjoyable day
yesterday. Met up with my cousin for a late breakfast in the Waterside
Café, floating barge permanently moored on the Canal in the heart of
Little Venice, which some of the Spiritlove forum members will remember
from one of our Meet-ups, as this is where we had gathered before
heading off on our boat trip down to Camden Lock.


This has become my favourite meeting place now. The constant stream of
tourists, cyclists, dog walkers and passing barges doesn't detract one
bit from the peaceful, relaxing beauty of the place.

The Waterside Café serves a lovely selection of reasonably priced food and
their All Day Breakfasts offer something for everyone. It really is the
perfect setting, looking out over the water onto weeping willowed
Brownings Island, a small island in the centre where the ducks, swans,
herons, coots and other wildife congregate - all lit up at night-time,
such a pretty sight to behold.

The name 'Little Venice' is believed to have been coined by the
poet Robert Browning who lived there from 1862 to 1887. Browning's Pool
is named after the poet, and is the junction of Regents Canal and the
Paddington arm of the Grand Union Canal.

After breakfast we decided to take a leisurely stroll down the towpath
of the Grand Union Canal - a part I had not explored before, though many
times I have walked the trip down the Regents Canal towards Camden
Lock.

What a discovery! In less than five minutes strolling along the towpath
we found some lovely canalside restaurants and a footbridge which took
us straight into Paddington Station! lol - the meet-up venue for the
most recent Spiritlove Meet-up. (Wish I'd known about this before our
meet-up). Also along the way just before the footbridge is a completely
new (to me) area of pleasantly designed office blocks, with a little
square in the middle, with a Sainsburys, Starbucks, Monsoon and other
shops of interest, all just within a couple of steps of the Canal. This
we discovered is the headquarters of Crossrail -and this development
has been built around and in anticipation of a new railway station,
Paddington Central (or Paddington Basin maybe) - the platforms are still
under construction but almost ready from what we saw. No doubt this
will be all finished and up and running in time for the Olympics.
How wonderful to arrive in the heart of London without having battled
through the usual noisy traffic jams, fumes and general hustle and
bustle of the capital. I'm so chuffed with my new discovery. Very Happy
We finished up our pleasant walk with a nice glass of Guinness in one of the canalside pubs, The Union.
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Re: Kitkat's KK Blog

Post by Feather on Sun 23 Oct 2011, 23:00

I remember Little Venice very well. I had my photo taken at the table where we had our coffee or cold drinks.
It seems a long time ago now especially with the wind howling round the house here.


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Re: Kitkat's KK Blog

Post by Kitkat on Thu 10 Nov 2011, 21:32

Mixture of good news   and yukky    (isn't it always the way) ...

Really excited and looking forward to seeing my niece and her lovely fella - coming over from Holland for just the weekend.  They are booked up to go see Irish comedian Tommy Tiernan in Leicester Square, and will be staying over with me from the Friday (18th), heading back on the Sunday (20th).

Letter today from the hospital giving awaited appointment date for MRI Scan (trying to discover the reason for the chronic pain I've been enduring constantly now for about 4 months).  The appointment has been fixed for a Saturday(!) and (Sod's Law) Saturday the 19th.  Out of all the flamin' days/weekends in the year ... they had to go and choose that one.   Humph!  Not a happy bappy.
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Re: Kitkat's KK Blog

Post by Feather on Thu 10 Nov 2011, 22:03

Sorry you still have pain, kk. It tires the life out of you when it goes on for too long. I've had back pain for months as well. I'm told it's sciatica. It's at my left side mainly and goes right down to my thigh. Good luck with the scan. xxx.


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Re: Kitkat's KK Blog

Post by Kitkat on Thu 10 Nov 2011, 22:29

@Feather wrote:Sorry you still have pain, kk. It tires the life out of you when it goes on for too long. I've had back pain for months as well. I'm told it's sciatica. It's at my left side mainly and goes right down to my thigh. Good luck with the scan. xxx.

Ooh Feather, not very nice for you - sciatica is supposed to be very painful.
The pain that I'm getting is the same excruciating pain and in the same area as I experienced when I woke up in the recovery room after what should have been just a routine exploratory op (not the last one I had, this was one before ... checking for cancer spread, which proved okay) BUT I've never experienced such dreadful pain in my life before, and my pain tolerance level is pretty high. It was coming in waves and was like a band of pain right around my body. I was actually crying out with it and wriggling and writhing down the bed. I was hooked up to a drip thing and they kept going to it and changing whatever sort of mixture it was that was in it. Flapping all over the place, nurses, doctors, sisters. I remember the sister (matron they used to call them) asking me at one stage "how is the pain now?" and I said oh, I haven't had any since you last asked. She said "oh that's good ... it's been a whole 10 minutes since then" - and in fact I didn't feel any more after that. Drugged up I guess. .... until it started again ... a few weeks after the op. Remember, I had it to a certain extent when we were at Bath. It's there in the background now all the time but flares up (the band) from time to time and doesn't seem to be going away, but actually getting worse. I'm kept awake with it - can't find any comfortable position at all, and mornings are absolute hell ... first trying to get out of bed. Feel as if I've aged 10 years since I last saw you.
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Re: Kitkat's KK Blog

Post by Kitkat on Sat 19 Nov 2011, 12:58

Just back home. MRI was horrendous! One hour stuck in this claustrophobic tube. First half hour not so bad as had a pillow under my knees and they were concentrating on top half (spine). Strap around my head to stop it moving and massive earplugs to drown out some of the noise (beeps, whirrs, bangs, all sorts). Then bed/table was slid out of the tube and had to change position. Easier said than done. Oh man ... what a pallava that was. Every tiny little movement, even twitch of a finger caused the most excrutiating pain (in my lower back & pelvic area). Eventually got there and this time the strap had to go around my hips as they concentrating on the lower area (where the pain is). No pillow this time, had to lie totally flat and absolutely still for 25 minutes inside the wretched tube. Table eventually slid back out and it came for me to get off the table. A further 15/20 mins trying to do just that! I was literally crying out with the searing pain and with every movement, locking the pain in. Same thing happened when got home and tried to get out of the car. Eventually managed to hobble indoors and now I've got my handy Mister Grabbit with me permanently going around the house. Doubles up as a walking stick. Thank goodness it's Saturday, and lucky for me my niece and bf still here also. They in the kitchen right now cooking up some kind of surprise Greek meal. Yesterday they made Moroccan tajeen with couscous.

Right now I don't have to move from my position here at the computer, with all the important things to hand around me - phone, TV remote control, cat, moby, cuppas on call. Happy as a bug in a rug (ish). So, I'm getting stuck into my latest project ... creating a Family Album website that all the branches of the family scattered throughout the world can share and contribute to. The aim is to have photos (old, current and new), various personal diaries, family history, a diary to record events, birthdays and such, resulting in hopefully and treasured little memento for future generations to cherish. I've already started the skeleton and putting some touches to the design. It's not going to be open to the public, totally private to family members to share amongst ourselves. Ah, the wonders of the net.
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Re: Kitkat's KK Blog

Post by Feather on Sat 19 Nov 2011, 13:16

Sounds an awful experience, kk. How long to wait for results this time?


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Re: Kitkat's KK Blog

Post by Kitkat on Sat 19 Nov 2011, 13:19

@Feather wrote:How long to wait for results this time?

My appointment with Consultant (Oncology Team) is on 20th December. They are the referring docs, so won't know results till then I guess.
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Re: Kitkat's KK Blog

Post by Kitkat on Mon 26 Dec 2011, 23:59

In short, the MRI Scan showed that the cyst is still there on one of my ovaries - that was the reason for the hysteroscopy procedure.  Woke up from that op with the most excrutiating pains. They told me after that op that there was nothing found!  They don't think the cyst is cancerous but repeat Ultrasound hs been arranged for 17th January just to make sure.
Enduring the MRI itself was sheer hell physically and really exacerbated the pain.  The second one last Friday was much shorter - about 15 minutes, and I had the support pillow under my knees this time - but the pain was just as bad when it was over and an excruciating ordeal trying to get down off the bed afterwards and for 2 or 3 hours afterwards.  The journey home from there that day was sheer hell.

Well it wasn't long after that hysteroscopy op I started getting the awful constant pain that I'm experiencing now.  My suspicions have always been that it was the op itself that started it .. and now I think this idea is only starting to dawn on them also, hence all the sudden emergency checks.  
MRI also showed there is a "suspected infection" on one of my discs... so a further 'emergency' MRI Scan was arranged which I had last Friday.  I await appointment date back with my Oncologist which he said would be early in January, just as soon as all the results are with him, the MRI and the other 'emergency blood tests' that I had to have done at last Friday's appointment.
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Re: Kitkat's KK Blog

Post by Kitkat on Tue 27 Dec 2011, 00:01

Last night for me has got to be the worst ever ... so far. It was the pain woke me up - about 2.30. Was just sooo much I just had to get out of the bed, that in itself was a struggle and a half. At one stage I
thought I was going to be trapped there for ever, I literally could not move a fraction of an inch without this horrendous searing sharp pain.

Managed to get out of the bed eventually and travel to the kitchen (with some difficulty but with the help of the walking stick which I keep by the bed at all times now). Just as before, the actual physical
position needed for the second MRI scan on Friday has really exacerbated the pain. Took some more painkillers (had to force down some bread and butter first as these have to be taken with food) but didn't seem to help much. I just sat up for hours - alternating between reading, flicking through the TV channels - anything to distract... everything has to be done in a straight line ... any kind of movement that involves turning just in the slightest or stretching out a leg or arm (like reaching to open a door etc) would set off the bolting pain. I was so tired but so reluctant to go back that torture chamber of a bed.
Eventually crawled back in there at 6.30 this morning and must have slept straight away because didn't remember anything until 12.30 today when I crawled out of bed. More painkillers and after about an hour it eases off. (Also having to visit the loo frequently - which is indicative of infection).

Lucky no work today. Running short of painkillers again, so I will go to the docs tomorrow - hopefully they will be open, get some more and ask if maybe they can give me some antibiotics or something.
Last visit there they couldn't really prescribe anything other than painkillers till the results of the MRI were available to them. Course there's the second emergency MRI results to come yet which may not be
through, but either way whatever it is, is getting worse as time goes on.
It also means that this ultrasound thingy appointment fixed for the 17th Jan (which is a repeat of a procedure done last year so I know what to expect) - I literally physically won't be able to go through with this because of the position I would have to take up - lying on my back etc. The only way I could endure this would be for them to give me something to knock me out.

There's bleeding today as well - which is the situation which started all these exploratory procedures in the first place - before any of the pains. That was the main thing they were worried about last year and if it occurred again was to report to them immediately. So I'll let GP know tomorrow also, who will notify the hospital.
(I'm starting to think the worst now)

I'm just so glad that my brother has been here with me over the Christmas period. He goes back on Friday, has renewed his contract for another year in Saudi.
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Re: Kitkat's KK Blog

Post by Feather on Wed 28 Dec 2011, 22:31

Plenty of people would have sued the NHS long ago. I hope you got your painkillers today and that you have some relief from pain tonight.
I remember you had infection after an op before. I wish you a restful night, kk.xxxx


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Re: Kitkat's KK Blog

Post by Kitkat on Thu 29 Dec 2011, 11:32

I take back what I said about that recent night being the worst ever... Last night topped it - only this time it was food poisoning! From 10 o'clock yesterday evening until 2 o'clock this morning - non-stop pains coming in regular waves and surges. These pains even over-rode the usual pains in my back. I had actually had a good day where they were concerned. I know exactly what it was. Fried up a bit of frying steak and onions (use by 28 December which was yesterday) but it had already been opened we had some the day before and it was fine. I did up two loads, made a sandwich for myself and left the rest for Jimmy when he arrived back from playing darts with my cousin. He arrived back about 10 o'clock and I had just started suffering at that stage, so told him NOT TO TOUCH IT!
My misery was doubled because when I eventually vomited up the offending article (about 1.30 this morning) the back pain was just hell with every wretching movement.
PHEW! I'm not long up as obviously didn't get much sleep last night. Eventually dropped off at about 2.30. What's next, eh?
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Re: Kitkat's KK Blog

Post by Feather on Thu 29 Dec 2011, 12:01

OMG, kk. There are no words----


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Re: Kitkat's KK Blog

Post by Kitkat on Sun 01 Jan 2012, 20:31

New Year's Day in the Kitkat household. Aah ... peaceful and calm ...
Got the whole place to myself again for a while (apart from the cat)
... remote control is mine - all mine to do with it what I will ...
Brother gone back to Saudi ... 2 whole days of doing nothing to enjoy
before thrusting back into the drudges and stresses of work on Tuesday.

Decided
to make a nice casserole (well, it's a stew really, but sticking it in a
fancy dish and putting it in the oven makes it a casserole ). BIG mistake!
In peaks and troughs throughout the day this flamin' constant back
pain rears its ugly head - always worse in the mornings - but once daily
morning dose of painkillers set in (after about half an hour or so) I
can even fit in a hip-swinging mini hooley to the radio when the figary
takes me. (though 4 o'clock this morning had me sitting on the edge of
the bed bawling my eyes out because I sooooooo wanted to lie down and
SLEEP, but the pain wouldn't let me find any kind of relatively
comfortable horizontal position. The pain had woken me up in the first
place at that unearthly hour, so hobbled out of bed (with the help of
trusty but pretty folding walking cane always to hand, I managed to
force down a toasted crumpet before dosing up with painkillers - which
must be taken with or just after food).
Anyway, back to [later on]
this morning. Obviously, when I decided on an oven casserole I was in a
hip-swinging pain trough ... not a bother on me to bend down and put
the casserole into the low shelf of the low oven. Throughout the
holiday there have been folk on hand around the house to "call upon" for
the bending and lifting necessities that my other trusty gadget (Mister
Grabbit) can't quite manage. (Mister Grabbit is like a long pincers
with a handle at the end that controls the pinch/grab/lift bit. It's
actually one of the instruments used by the guys employed by the Council
to pick up items of litter, leaves etc, from the pavement - also handy
for getting things down from high shelves etc - but will only tolerate
items of a certain weight). Anyway - my casserole is done to a turn and
ready for table and tum ... smells delicious (even though I say so
myself). I've turned the oven off and I'm sooooo ready to eat ... but
... I CAN'T BEND DOWN TO GET THE FLAMIN' THING OUT OF THE OVEN - can
only get down so far and the pain locks and jars and OOOOOUUUCH! Can't
even get into a low enough position to spoon anything out of the dish.
I could of course take some painkillers and wait about half an hour for
them to sink in and do their job - BUT they have to be taken WITH OR
AFTER FOOD - and I can't reach the FLAMIN' FOOD!

Soooo, I guess for now anyway, I'll just have to settle for a cheese and pickle sandwich.

HUNGER PANGS WITH A TWIST.
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Re: Kitkat's KK Blog

Post by Kitkat on Tue 03 Jan 2012, 19:20

Dreadful night last night (pain-wise and sleep[NOT]-wise). Due back at work today first day after the holiday. So crocked up this morning I had the most agonising difficulty and extraordinary length of time just trying to get dressed ... . Hobbling very slowly around the place with the TWO walking sticks this morning, one either side (one foot very slowly place in front of t'other - any kind of jerk or slightest corner turning from a straight line causes the pain to jar and lock). Managed to get Pepsi fed with the help of Mister Grabbit (he gets excited every time I go for Mister Grabbit now ... thinks it means 'puss-puss' time) and opened the kitchen door so he could go out and do his business when finished.
Next thing I know there's an almighty wailing coming from the kitchen... this is going on for about 15 minutes - the time it took me to hobble gingerly into the kitchen ... to find a big tabby tomcat finishing of Pepsi's puss-puss - with a most indignant Pepsi, back arched & hair standing on end, making pathetic little noises from his place of safety just inside the door. Eejit! As soon as he saw me he got courage and the low groany noises became piercing shrieks and hisses. I shoo'd Mister Fatso Tabby out the door, threatening him with walking stick in air - ouch! Jarred me back into a locked pain. Pepsi's forlorn face looking at his empty dish ... Sorry Pepsi... no WAY can I attempt a repeat of the feeding saga just now ... too bad.
Off to ring GP to see if I can fit in an appointment (see if there's any news yet of any results from 2nd MRI etc) Got an appt for 9:40 so texted my colleague to say would be late in - who I work with (she just works till 3 o'clock, from then until 5.30 I'm totally on my own there in Reception). She texted back that she has been ill and not going in to work today. That did it! Decided to ask doc for an official sick note sign me off work for a bit. No way could I have got through this day there the way I am at the moment. Doc says results wouldn't be in yet, too soon ... over a WEEK for God's SAKE! Yeah, but especially with the holidays and that ...and anyway wouldn't come through to them, would be my oncologist at the hospital who arranged for all the tests in the first place. I need to contact them. I broke down there in the doc's surgery. The tears came and I just couldn't stop sobbing.

Anyway, she has now ORDERED me not to go to work for 2 weeks (at least) and I have an official doc's note stating 'unfit to work - severe low back pain under Specialist Review'. After the 2 weeks she will see how things are and decide whether I need longer. This is one time when I am not ignoring doctor's orders. I'll wager Mister Boss Man won't be a very happy man today (I texted him the happy news - had already texted him about being in late and my colleague not coming in - he doesn't get in office till about 11 o'clock ... has his own troubles with his wife who has progressive Parkinsons Disease) - but is generally to be found there till up to midnight 5 days a week, but I'm afraid that's how it is right now. We've all got to deal with our own situations and circumstances in the best way we can. Quite honestly, if it were financially practical for me to give up work altogether right now, I would do so in a flash, but that's another story and really not possible at the moment. I have up until now declined the prescribed chemo treatment (which is basically in the form of hormone tablets - but required daily (one type for 3 years initially, change to another type after 2 years, and after that a review is done and probably change to something else altogether). Depending on current test results and what has to happen in that regard, if the worse comes to the worst, I may be forced to do just that anyway (give up work altogether), but can't think about that or the details that go with it until, if and when. Meantime, even if the worst is ruled out, there is still this painful nagging problem to contend with and get sorted.
One of the specialists who has been introduced into the saga is a neurosurgeon. That, to me, means possibly more surgery to come. It's just never-ending.
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Discitis ?

Post by Kitkat on Tue 03 Jan 2012, 23:09

Discitis - seems to be my ailment. This is the name I've heard mentioned on various occasions. The second MRI scan was to check that out - and one of the blood tests I had done - the one straight after the MRI. (When the scan was finished the radiologist handed me a blood test sheet already made out and said that my consultant had requested that I have this test done, so the results would be with him when I go to see him (some time in January he said). I had it done on the same day in the hospital as otherwise would be after Christmas and would meananother painful trip in there (although only just ... when I reached the department in another part of the hospital it was closed and all in
darkness. I read the notice on the door which said they close at 4.30 -it was only 4.15. Then through the glass strips of the door I saw a shadow move behind the desk (which was far off) so knocked on the door. They had indeed closed down early (it being the Friday before Christmasand everyone wanting to get off to start their celebrations, or shopping or whatever .. the blood test room was already locked up for the night ... but I managed to persuade him to reopen for me (it being
Christmas, the time for goodwill and all that ..). I did ask the guy what this particular blood test was for and ... he couldn't pronounce it, but spelled out Discitis.

http://www.spineuniverse.com/conditions/spinal-disorders/discitis-disc-space-infection-0

My boss phoned me a while ago from the office (he's usually there till all hours of the night working) to see how I was and while speaking on the phone he read out from the screen what it sounded like that I may be suffering from ... all that he was reading was fitting in with my problem and then when he said the name Discitis, I remembered that being mentioned on a few occasions.

He also said that if I get no joy from contacting Oncologist's secretary tomorrow (which has been the
frustrating case in the past), he would write a letter to the Consultant (not a legal letter as such - he is a solicitor) but simply a one-to-one "urgency of the case" sort of thing, which has worked wonders
in the past with similar frustrations with his wife's case (Parkinsons). That was nice of him to ring (which I do believe was genuine concern, though I'm aware the whole business affects his own
interests (workwise) in a huge way too).

So ... feeling a tiny bit more optimistic than I was earlier on .. but there's still an uncertain time ahead whatever about immediate concerns. Even if discitis is confirmed, they still need to find the root cause in order to treat appropriately. Seems antiobiotics should be part of treatment and I did suggest this at my last GP visit, but I think they need the elusive results before administering such. GP was reluctant to do so anyway. (From what I have read, there are two possibilities of root cause in my case ... (1) the 'cyst' which may or may not be benign (a section in the link refers to some such, also the fact that people with a history of cancer can get discitis); or number 2 - also mentioned therein - where internal damage can have been done to a by scraping the side of a disc on an occasion such as internal examination or surgery (my overall suspicions). Gonna phone the hospital tomorrow anyway and see what I can find out.
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Re: Kitkat's KK Blog

Post by Kitkat on Wed 04 Jan 2012, 12:30

As it turns out, no need to ring the hospital today - they rang me about an hour ago (Mr Osborne, that is, the Orthopaedic Consultant - who conferred with Oncology Consultant at last appointment and who also seems to be the in-between to confer with Neurosurgeon at Charing Cross Hosp) ....
Anyway, he really just phoned to keep me up to date (was most apologetic as he had intended to call yesterday but in the event hadn't).
Not exactly postive news ... Second MRI doesn't seem to have given them any more. The one thing it has done though is to rule out a tumour! (i.e. rules out a cancer connection there - at least visible anyway) Phew! .. that is one hell of a relief.

For some reason now they still can't seem to be able to confirm whether it's Discitis or not ... and so needs further looking into. The Charing Cross lot now need to do a Biopsy and I should be hearing from them soon in that regard.
(I can feel the Feckety-Feckety-Feck Dance coming on ... er - at least I would if I could ...

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Re: Kitkat's KK Blog

Post by Feather on Sat 07 Jan 2012, 13:54

I'm so relieved it isn't cancer, kk. Although you have been in great pain, nothing could be worse than C.


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Re: Kitkat's KK Blog

Post by Pixie on Sat 07 Jan 2012, 14:16

@Feather wrote:I'm so relieved it isn't cancer, kk. Although you have been in great pain, nothing could be worse than C.

I agree.

You have so much to cope with KK, it can't be easy.
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Re: Kitkat's KK Blog

Post by Kitkat on Sat 07 Jan 2012, 17:59

Talk about copy cat! ... Took Pepsi to the vet today. His gums seem to be quite sore and I think it hurting his mouth while trying to eat sometimes. He needs to have two teeth extracted - and a biopsy! (just to make sure the problem there's no problem elsewhere). All this would cost about £400-£500 but meantime, for now I just had him innoculated because he not had his regular injections for a few years now.
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Re: Kitkat's KK Blog

Post by Kitkat on Wed 11 Jan 2012, 12:33

My "Synchronicity" Story (posted elsewhere ... but captured here also - for the record)

Last Friday, I got a text from a friend asking if I'd like to meet up for lunch at a place near where I work. J and I go back a long way (30 years), although don't meet up very often but every now and then I'll get a phonecall or text from him out of the blue. Last time we met up was in September.
I texted back that I was not at work that day but arranged to meet on Monday instead as I am off work this week also (signed off by doc for 2 weeks). He picked me from home and I suggested we go to Little Venice (the barge cafe down on the canal). He was driving. I suggested not to go the way he was heading .. too much traffic that way ... I know a short way (the way I always go). On the way I was telling him about my recent situation and the reason for my walking stick that I had with me (getting in and out of the car is a major problem at the moment. Well, I don't know what the hell came over me - twice, three times ... more ... I gave wrong directions, wrong turnings ... we were just going round in circles and I could see he was getting a bit impatient. At one stage we passed through an area that he knew and he pointed out a little coffee shop on a corner, telling me that he very nearly bought that place - and always regretted that he hadn't done - with 3 flats up above the shop for renting out, virtually paying for itself in no time.

Now, at this stage (with my erratic directions) we are suddenly in Paddington .. not meant at all - noise, traffic, hustle and bustle - total contrast to where we were aiming (and I've no idea how to get there from that direction (by road), so I suggested maybe it would be better if we get into the canal from there and walk back down along the towpath to Little Venice. We were in a really built-up area at this stage going round busy roundabouts - etc looking for an entrance from there to the canal. Went down this one-way street and there were no parking spaces there at all. Eventually found a spot but I said no, you can't park there. He said was okay as he has a Disabled Badge which means he can park anywhere and didn't have to pay. I joked about how I was probably eligible for one those at the moment (it's a major event just getting in and out of the car these days), but wouldn't have a clue how to go about getting one, what's required etc. He said to check with my GP or hospital. As he said that his phone rang - someone he's not heard from for ages and funnily enough he said had that only yesterday he had been thinking about her. She was apparently suggesting they meet up for coffee and a chat and J explained he was in Paddington with another friend he hasn't seen for a while and we were just about to go and get something to eat, so they would meet up later.

When he came off the phone he told me that this lady has MS and has been bound to a wheelchair for many years. At this stage we'd arrived at some shops, restaurants and office blocks and we could see the Canal and a signpost pointing to 'Little Venice' but we couldn't find an entrance to get down onto the towpath. We went round and round, over footbridges and eventually went into one of the shops to ask how do we get down there. The girl didn't know - all she could tell us was the Canal actually stops just before there. We spent another 10 minutes or so walking around still trying to find an entrance ... at this stage I'm really starting to slow down, the morning painkillers are starting to wear off and it's getting a bit of a struggle to walk. The tablets have to be taken with or after food, so we decided to give up the search and go straight away to meet up with J's friend and we could all eat together. He phoned her to find out where would be easy for her (as with the wheelchair certain places and travel etc would be restrictive. She said I'm already sitting in a nice little cafe, perhaps you could come here. Where? ... only the very coffee shop place that he had pointed out to me on the way there - the one that he had regretted not buying. What a coincidence that was. When we arrived at the cafe, I saw straight away an old lady being helped into a wheelchair - obviously assumed that to be her, but J walked straight past her without acknowledging her as he was bursting for the loo. As he was coming back another wheelchair bound person was coming through the door ... I thought oh this must be her then, but was a guy in this one .. and someone else behind him with a walking stick. J phoned Angie again to see where she was and she said she had had to pop out for 10 minutes but would be here soon. Eventually she arrived - a very attractive, young girl in one of those electrically controlled chairs that scoots all over the place - another one with a walking stick!!
(I need to cut it short at this stage - and just flick to what I later discovered, all the time we were in there, people in and out with more walking sticks, more wheelchairs and they're all coming into talk with Angie. She explained to me that she works for a legal firm as a volunteer advocate. Their office used to be next door and that after they moved up to Victoria she continued to conduct a lot of her consultations there in the cafe! The third man who came in the door with her (lol, about the only person there who wasn't carrying a walking stick) - he is actually an employee of the company. He works as an interpreter. Her job (which she clearly loves and puts her whole heart and soul into) is actually as adviser and "fixer" for people with all sorts of disabilities, working closely in association with Social Services, hospitals, liaising with GPs etc - advising and assisting on the services, benefits and gadgets available to people in all areas of disabilities, the sort of services that people in such situations are not aware of and wouldn't know the first thing about or where to look to find out about them - and which she herself was not aware of until her own affliction, which taught her just how desperate and helpless a predicament people can find themselves in and all the surrounding frustrations involved. Now she spends all her time helping other people who find themselves in such a situation (and does so for free if the person is unable to afford her charges).
We had a long chat about my own situation - and she instantly understood the present situation where I just can not lie on my back as she herself suffers from that same problem, the spasms that can occur and leave you unable to move an eyelash without pain, let alone get out of the bed - the fear and reluctance to even attempt getting into the bed to lie down - when all you so desperately want to do is sleep, but you can't lie down for the pain ... yet you can't stand up for the pain and at times you can't sit down for the pain! (at times when even just breathing is a painful ordeal) - The two recent MRI Scans that I had have exacerbated that problem and I came out of those scans in untold agony. Who do you turn to? Who can help in these situations? She knows exactly who, what, where, why and how. Turns out she works out of Charing Cross Hospital also ... knows my Oncologist who is actually based there although I see him at a nearer hospital where he visits once a week for his consultations - and when I mentioned about the forthcoming biopsy and (God knows what other tests etc yet to come) with a Neurosurgeon which will be at Charing Cross (whom I have yet to hear from) - she instantly gave me the name of the neurosurgeon (I didn't even know his name) that I will be dealing with - and added that he is excellent, the best in the country apparently ...

(Trying to keep this short - but you know that's not an easy task for me at the best of times). In short, she has made a referring telephone call to the relevant department of Social Services in my area who deal with disability services - has assured me that I should hear from them within the week, to arrange an appointment for someone to come to my home to assess my position and see exactly what my immediate needs are. She said top priority is a proper orthopaedic bed (an electrically controlled adjustable one!) which they would provide (free!) ... and that's just a fraction of the possible things that I would be entitled to in my situation. Disability Benefit - the full wack £51 a week, whether working or not, disabled parking badge for the car, (or the option to forego the £51 and choose instead to have a disabled easy access car - free! with tax and insurance paid!) .... a physiotherapist to visit at home so many times a week, a home help to come in (15 hours a week I think) - she herself has someone who does so, cleans, polishes ... and anything else that I may be having difficulty with. Says her house is spotless. (She has a Mister Grabbits just like I have too - although hers is called something else, lol, but I could get one of those also if I wanted). Necessary liaison with the various medical bodies etc ... the list is endless ... and all the time she is saying these things WILL happen, it's not a maybe, it's an actual entitlement which many people just never get to know about. After all, she said you pay your taxes, National Insurance etc - that's what you're paying for. An extremely positive person who drives home the importance of positivity in the healing process.

As we were leaving she gave me her card. The company is called Last Resort Solutions Limited and printed on a background is the well-known picture of the Footprints in the Sand.
You know the one that always goes with the poem

Footprints in the Sand
One night a man had a dream. He dreamed he was walking along the beach with the Lord. Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand, one belonging to him and the other to the Lord.

When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times of His life.

This really bothered him and he questioned the Lord about it. "Lord you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life there is only one set of footprints. I don't understand why when I needed you most you would leave me."

The Lord replied, "My precious, precious child, I Love you and I would never leave you! During your times of trial and suffering when you see only one set of footprints, it was then that I carried you."

What J doesn't know is that the night before (Sunday) I had had one of the worst nights ever. Stood in my kitchen at 4 in the morning in pain and crying my eyes out - not able to get into the bed (torture chamber) and even if I could, not able to lie in it, I said out loud (not sure to whom I was talking ... my mother? Spirit? I actually said out loud - "This is to anyone that may be listening) how desperate I felt, how alone I felt, how desperately unhappy I was. Why is this happening to me. I know you're there because I've seen you and I've heard you before ... now I'm beginning to doubt it all. I just feel there is no-one to turn to, no-one that can help. If you're really there give me some kind of sign - but I need something definite, something concrete - either appear right now in front of me or make this pain go away.
Neither happened, but something very concrete, definite and positive happened the day after when I met a lady called Angie (short for Angela) ... Angel?

PS: There have been many other synchronistic instances over the years where that same friend J has been centrally or intermediately connected.

PPS: Yet another one to add ... Had a phone-call from J at the very moment I was posting this up in the other place. He was phoning from Harefield Hospital. He is due to have a lung transplant op soon and is attending the hospital today for various pre-op tests throughout the day, culminating with a chat with his consultant).
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Re: Kitkat's KK Blog

Post by Kitkat on Wed 11 Jan 2012, 13:52

Letter just arrived in the post today from Charing Cross Hospital, giving appointment date to see the Neurosurgeon there on 2nd March.
The letter is dated 6th Jan (last Friday ... the day I got the text from J).
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Re: Kitkat's KK Blog

Post by Kitkat on Sun 15 Jan 2012, 23:58

Referring to my 'Synchronicity' story (above)...

I have already mentioned that there have been many other 'synchronistic' happenings involving that same friend.
Here is just one of them ...

Long story (sorry), but has to be told from the beginning, to accentuate the connection/links ... the chain of events ... what I see as 'synchronicity' ... whatever that may be.

I first met J (Egyptian) when I was working as a secretary for an Egyptian company in London. It wasn't a terribly busy office but certainly a sociable place to be. Some of the clients were diplomats attached to the Egyptian Embassy who would often pop in just to chat and have coffee with the boss. J was a regular visitor, although his English is perfect. Many of their clients didn't speak any English at all - and I would sometimes type letters for them, putting their requirements into English, or explain certain documents which they had no understanding of. That's where I learned how to make 'proper' [what I called Turkish coffee - but they insisted was 'Egyptian' coffee. lol] It's also where I learned to speak Arabic. There were 3 floors of offices, and on the top floor was the office of the owner of the building. The rent for the other 2 offices were paid to him (SS)... a mean, slimey, horrid little man in every sense of the word. Nobody liked him. His secretary was an Egyptian girl, Zizi, who had been living in England for about 5 or 6 months. She and I became good friends and each day I would teach her 3 things in English and she taught me 3 things in Arabic. She was a good teacher. She absolutely hated working for SS (Slimey Salem was our nickname for him) and she would often come down to our office to escape his grubby advances.

One day when J was in the office, we were chatting and I happened to mention that it was my birthday the next day. He asked what I was doing for my birthday and when I told him where I was going for a meal with some friends, as it turned out he worked literally next door to that restaurant (minicab office). On the day he surprised me by popping in to the restaurant with a card and a lovely birthday present (which I've still got). As they say ... the beginning of a beautiful friendship. Not long after that, J started up his own business in offices a couple of streets down from where I was working.

As time went on, the situation with Z and SS became unbearable (he had taken to locking the door with Z inside, trying to have his wicked way with her). This day she escaped and came running down to our office in tears. J was there at the time, and my boss had to be restrained from going straight up there to kick the guy's head in. It was decided between them they would deal with him in time "the Egyptian way", but meantime they wouldn't allow her to go back anywhere near that man and it was arranged she could go and work for J in his office, which she did, and was happy there for another 2 months or so - until she returned to Cairo. She and I kept in touch by letter over the years afterwards, she had married and had a baby.

5 years later, on replying to one of her letters, I wrote I so wished I was in a position to be able to go to Egypt and visit her there, see the baby etc. With her limited understanding of English, she misunderstood and I got an immediate return letter saying how very excited she was that I was coming to Egypt, she couldn't wait, I must come and stay at her home and that if I was coming by Egypt Air to let her know the time of my flight because her husband was a pilot for Egypt Air and he would work it that he would be flying that particular plane and "I would be well looked after".

That very day (before I had a chance to reply to her letter) I got one of those 'out-of-the-blue' telephone calls from J. Asked how Z was, as he always did, and I told him about the letter and Z's misunderstanding and that no way could I afford to go. He then asked me .. if I could afford to go, would I want to, and I said oh most definitely, that's the only thing that would hold me back. Then he told me that the courier company DHL had contacted the Egyptian Embassy asking if anyone travelling to Egypt was interested in doing a trip for DHL, which entails being put on their list of people and agreeing to travel at short notice to any country that you have specified in your application. These return flights are paid for by DHL, accompanying the DHL bags on the outward journey, filling in the necessary paperwork and once you have gone through customs and signed off the bags, your job is finished and the rest of your time in that country is your own (10 days). The only restriction is that you are not allowed to put luggage in the hold, only what you can carry on the plane with you. He had been asked if he would like to go on the list but like most Egyptians when they go back home, if it's for a holiday they usually go for about a month at least, and cannot go empty-handed, bringing presents for all the family and extended family there, so the luggage restriction is not really suitable or practical for them. Nobody at the Embassy took up the offer, for that reason. I said most absolutely and definitely I would be interested, and prepared to go at short notice. 3 days later he got back to me - there was a trip in 2 weeks' time, gave me the number of the person to contact at DHL - which I did.
I had to get a visa first, which meant going to the Egyptian Consulate here in London. I was warned to go there very early in the morning as it's only open for a couple of hours and always extremely busy with long, very slow-moving queues applying for visas. That was no exaggeration! When I arrived there, the queue was way down the street outside the building! When I (eventually) got inside the door and the queue got nearer to the desk - manned by one very grumpy guy who obviously wasnt very happy in his job - I could see that there was another queue formed after the desk, going up some stairs and into another room. People were being sent to join the back of that queue after dealing with Mister Grumpy. When I got within hearing distance of the desk, 2 separate lots of people were told they couldn't join the second queue because they didn't have photographs for the visas. They would have to go away and return with their photos - to queue up again (as they would soon be closed). Oh NO!!! Guess what ... I didn't have any photos with me. Oh well, it's pointless now ... I've stuck the queue out for so long. Just need to be prepared now to go through all of this again another day... and then AGAIN another day after that to come and collect the visa, as (I had been told) it's not done there and then.

Eventually I'm in front of Mister Grumpy (he's actually a strikingly good looking Mister Grumpy (would be moreso if he could manage a ghost of a smile) - who looks familiar to me, but I can't place why ...) who gives me a form to fill out with all my details. One of the questions is 'Your reason for travelling to Egypt' - Tourist or Business. (There's a big difference in the charge; the fee for the Tourist traveller is quite a bit more). I left it blank, as wasn't really sure what to put in there - bit of both really). While I'm filling out the form, another person is being told to come back another day as he doesn't have photos for his visa.
I hand the [almost] completed form back to Mister Grumpy - and he snaps at me Pleasure or Business?
I start to explain that it's both .. and to ask ... he interrupts - one or the other! You can't put both down. er ... well .. I don't really know ... b-b-but ...also ... I don't have .. photos with me .. I heard you tell others ... BIG sigh ... "Look, lady ... I haven't got TIME ..!!" Can't you SEE ... lots of people waiting behind you ... and then (with another sigh) "Look, I would like to help you because I know your face"). That's funny, I said, because your face is familiar to me too... have we met before? The only place I can think of might be at [place where I used to work]. I asked Do you know [the name of my boss back then]?
His face suddenly took on a whole new shape - the grumpy frown lines transformed into a knock-down gorgeous beaming smile. OMG! YES! It's Cathy! You did that favour for me! (Favour? I'm thinking ... what favour? Oh, he must be one of the guys I typed a letter for or something) which indeed did turn out to be the case ...God knows what the impatient queue of people must be thinking ... but he's forgotten all about them by now - meantime he gets up from behind the desk ... repeating again about the favour he will never forget ... offers me a chair and would I like some tea? Don't worry about the photos ... you won't need to get any ... Don't worry about 'Business or Pleasure' ... no charge for you either way ... I go make some tea for you ... would you like a biscuit? ...
I didn't need to go to the stairs queue. I didn't even need to come back another day to collect my passport. It would be returned to me stamped with visa over a dinner date (to be arranged as and when) at the plush restaurant of the Grosvenor House Hotel! (Well .. how could I refuse?)

(On top of all that, on the day I was travelling I had to set off really early to meet with the DHL representative at the airport to hand over the papers and explain procedure (stop off in Geneva where I would meet with another DHL rep, and where the first lot of bags would be passed over). So early, that the tube station desk was unmanned, nowhere to get a ticket ... and no-one at the other end ... so the whole journey/holiday - my 10 days in Egypt cost me absolutely nothing. I got to see my friend Z, stayed in her home - also met up with J and his family. He was already over there having travelled independently, and met me at the airport in Cairo.

And the last really ... really strange (synchronistic) thing in all this ... perhaps the strangest of all ...

When I arrived at Cairo Airport, I was instructed to look for a guy holding up a DHL sign. He would tell me what to do to get through Customs etc. I saw him immediately and eager to put my Arabic that Z had taught me into practise, I spoke to him in Arabic. He said we first had to go through Passport Control, pointing to where there was one short queue which was moving quickly and two very long slow-moving Yep! ... we're on the back of one of the long, slow ones. Stood there for a good 5 minutes before I noticed the signs at the top of the queues - the short one was for FOREIGN and the long ones for LOCALS (Egyptians). I said to yer man then - in English .. shouldn't we be over in that queue? He was really surprised to hear me speak in English. Said he had just thought that I was Egyptian and that's why he had directed me to the local queue. So off we trotted over to the fast moving one. I had a look back to see just how long the other one was .. and WHO did I see standing in the queue there - about 3 behind where we had been standing ... Mister Slimey Salem!!!

----------------------------------

I wasn't aware of the word synchronicity back then. Quite honestly, I don't care what you call it. I just know that there's *something* going on. There's 'coincidence' and then there's 'something else' ... what that something else is I don't know ... I just know it's 'something'. It happens far too often to dismiss as simply coincidence.
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Re: Kitkat's KK Blog

Post by Whiskers on Mon 16 Jan 2012, 21:11

Amazing. Does make you think. The right place at the right time, but there's really a bit more to it. All those events linking in with each other. It's like when you meet someone and immediately something clicks. You feel there's a connection there but you don't always know why.

I'm sorry you're in so much pain KitKat. But at least things seem to be looking a bit brighter for you. I hope you get a break from this bad time soon. x
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Re: Kitkat's KK Blog

Post by Umberto Cocopop on Mon 16 Jan 2012, 22:20

@KitKat wrote:I wasn't aware of the word synchronicity back then. Quite honestly, I don't care what you call it. I just know that there's *something* going on. There's 'coincidence' and then there's 'something else' ... what that something else is I don't know ...
That 'something else' is often referred to as Apophenia: the propensity to see meaning where there is none. It's a psychological effect.

However, I wouldn't go so far as to say that the events in your story are unrelated. You know: working with Egyptians, doing favours for them, mixing with them and then going one day to the Egyptian consulate and meeting someone you'd previously done a favour for, an Egyptian, whilst getting a visa to fly to Egypt...

I think you can see where I'm going!

Seeking out patterns and meaning-making are two very strong human tendencies. If your tendency is very strong you'll see 'synchronicity', if less so, you'll see 'coincidences'.

It's all about psychology.
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Re: Kitkat's KK Blog

Post by Kitkat on Tue 17 Jan 2012, 08:22

@Umberto Cocopop wrote:That 'something else' is often referred to as Apophenia: the propensity to see meaning where there is none.

Well, ain't that a coincidence (yes - a coincidence in this instance - there is a defining difference)... as only yesterday I was reading about 'patternicity' ... same thing, but Michael Shermer's term for Apophenia. lol
I don't see it as quite the same thing in my examples - especially where my friend 'J' is connected.

However, I wouldn't go so far as to say that the events in your story
are unrelated. You know: working with Egyptians, doing favours for them,
mixing with them and then going one day to the Egyptian consulate and
meeting someone you'd previously done a favour for, an Egyptian, whilst getting a visa to fly to Egypt...

I worked at that place for all of 7 months! The 'Egyptian' incident happened over 5 years later...
and the most recent synchronistic account involving J (with many more in between) has no connection at all with Egypt or Egyptians (apart from the fact that he is Egyptian).

Have to leave it at this for now as got to dash off out now - hospital appointment, but will come back to this particular discussion with interest.
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Re: Kitkat's KK Blog

Post by Kitkat on Thu 19 Jan 2012, 13:11

Didn't get back to that last post on the day because this is an account of how my day continued. Wrote it up somewhere else but I'm slotting it in here for the record to keep it up to date.

Not long home from 4 stressful hours at hospital.
I feel I'm living in an ever-recurring nightmare with no means of
escape. My 7th heaven that I touched on the other day is now at 4, and
decreasing rapidly day by day.

I won't go into all the gruesome
details, mix-ups and complications of the past 4 hours; suffice to say
more tests, blood tests, and an ultrasound which lasted all of 5
minutes, but meant 5 minutes of lying on my back, excrutiatingly painful
- and this has crippingly exacerbated the back pain even further. That
aside, the result of that scan heralds a further operation necessary to
remove the ovarian cyst!! (yes ... the one that I had the op for about 6
months ago where they said there was nothing and which I woke up from
in excruciating pain - the same debilitating pain that's with me
constantly now. (That's Oncology Department - Central Middx)

Also,
the first appointment for Neurosurgery (fixed for 2nd March at Charing
Cross) - my Oncologist has said I should contact them myself to try and
have this appointment brought forward, as I am clearly in so much pain,
it's far too long to wait. He is also going to contact them
independently in that regard (he took a copy of the appointment letter) -
which is just as well because I phoned them as soon as I got home (15
mins waiting and wading through 'press this button, that button' and
then held in a queue ... and then they said as it's a first appointment
they cannot change it without the consent of either the Neurosurgeon
involved, or as I explained the Oncologist's involvement - official
consent from him personally, so I hope he does his bit and soon. He was
actually rushing over to Charing Cross after seeing me anyway as he's
due on Ward Duty there. So ... another wait now to hear from them.

Have
heard nothing from Social Services yet re my assessment for disability
entitlements either - Angie had assured me I would hear from them by the
end of the week (last week). She reckons she has done her bit (written
two letters), now it's in their hands; they may be busy but if goes on
any longer she will chase them up. Apparently she normally charges £25 a
letter, but for me she is only charging £10 per letter. Even so, I
think it would probably be better if I were to contact them myself to
chase them up - but need to find out from her as to where and whom.

Anyway,
that's the report of my day so far. I would dearly love to just soak
in a nice hot bath now and de-stress ... but that luxury will have to
wait till these current pains die down because as it is at the moment
even if I got meself into the bath I wouldn't be able to sit down in it.
Have to settle for a nice hot cup of tea and ... yes, a ciggie ... my
one and only pleasure and source of comfort at the moment.

Today is a really, really bad day (pain-wise). Every day seems to be getting worse. I think I've become immune to these flamin' painkillers. They just don't seem to be doing the job anymore. Yes, I'm feeling right sorry for myself. Need to get in touch with Angie now to get copies of the letters she has sent so I can chase them up myself.
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Re: Kitkat's KK Blog

Post by Kitkat on Sun 29 Jan 2012, 17:56

I sent an email to Charing Cross Hospital on 23rd January - penned in sheer desperation after a particularly bad day and night. (The email is in the Spoiler).
Spoiler:
Re: Appointment 02 March 2012 - Neurosurgery

On the advice of my Oncologist, Dr C. Palmieri (based at Charing Cross, but I see him at Central Middlesex Hosp where he holds regular consultations), I telephoned your office on 17th January to request whether it would be possible to have the above appointment date urgently brought forward to a nearer date. I was informed that as this is a first appointment, consent would be needed from Dr Palmieri, that you would be requesting this consent from him and I should wait to hear from you as to the outcome.

For ease of reference and indeed to simplify matters at my initial neurosurgery consultation, I am detailing below a brief resumé of the recent medical history, ops etc, leading up to my referral to Neurosurgery.
I would be obliged if the recipient of this emal could kindly pass it on to whomever I will be seeing in the Neurology Department, as I'm sure much of it may be relevant to my appointment there. Might save quite a bit of time (form-filling etc). There is so much past medical history and it's not easy to remember exact dates, events, results etc which might be important.


The reason for the request (to bring forward the appointment date), is that I have been experiencing considerable persistent, excruciating lower back pain over a period of 6 months now, which is worsening daily. Before my consultation with Dr Palmieri on 17th January, on the same day I had various blood tests and an US Pelvis Trans Vaginal - the results of which point to the necessity for an op to remove an existing ovarian cyst (left ovary).
A previous similar Ultrasound performed at Northwick Park Hospital on 2nd March 2010 showed 'a worry' with one of my ovaries and there followed a Hysteroscopy op on 12th April 2010 (at Central Middlesex), the results of which showed:
EUA, Cervix healthy-mobile anteverted uterus. Normal cavity, normal endometrium, no polyps/submucus fibroids seen.
Histology report to be forwarded to GP. No hospital follow-up required.
Whatever about the results, I woke up after that op with the most excruciating pain I had ever experienced in my life (and my pain tolerance is pretty high), These pains were coming in intervals, in waves - in my lower back and gripping like a tight band right around into my pelvic area. I remember calling out about how bad these pains were - I was wriggling and writhing down the bed with each wave, ending up with my feet and legs hanging out over the end of the bed. I was attached to a drip and the medics kept moving me back up to the pillow and seemed to be changing whatever was in the drip a few times. I was still pretty groggy in between pains and I remember the nurse asking me at one stage 'How are the pains now?' and when I replied that I hadn't had one since the last time she asked, she said oh that's good - it's a whole 10 minutes since the last one then. I didn't have any after that. Important to mention here that the pains I am currently experiencing are of the same strength and nature - and area - as those I experienced on that occasion, though quite some time elapsed from the date of the op until I first starting getting them. I really can't pinpoint exactly when that was - and it was just occasionally, sharp and jolting, but not as severe, daily and constant as they have been over the past 6 months.

The Ultrasound procedure itself (on 17th January), although only covering a duration of about 5 minutes, accelerated and exacerbated the pain as it meant lying on my back for those few moments (not to mention the painful procedure of trying to get in that position in the first place - and then getting back out of it!). I have undergone two recent MRI Scans in this connection also (one on 19th November - and a follow-up on the 23rd December) (showing a suspected infection on one of my discs (Discitis? - though apparently still not 100% sure). Obviously the MRIs entailed a longer duration lying on my back, and further restraints involved - both procedures were torturous ordeals (for the same reasons as with the Ultrasound) and have exacerbated the pain that I have been experiencing to the point now where every minute of my day, every tiny movement, is absolute torturous constant hell. I was signed off work by my GP on 3rd January ("Unfit to work - Lower back pain under specialist review") - initially for 2 weeks, but that has now been extended a further 2 weeks. (I am due to see my GP on 31st January to review - and extend further if necessary). Since the 2 MRI scans, I have been unable to get dressed, sometimes unable to sit down on the toilet (where the pain jolts in and locks), every little action throughout my day is sheer and absolute hell. Living off painkillers (Co-Dydramol and occasional Ibuprofen) which I have been taking now - constantly over a period of 6 months - together with a prescribed supplement for Vitamin D deficiency), was using a walking stick and a "reacher" intermittently and when needed at home and at work. Now the walking stick never leaves my side, it's in constant use around the house in everything I do, as is the reacher (which I call Mister Grabbit - without that I am completely stumped.). I have been informed of the disability services that are available and for which I should be eligible, and application has been made to Social Services for an assessment of my immediate needs, though I have not heard anything from them yet. Maggie Clark, Voluntary Advocate with Last Resort Solutions Ltd has made the initial referral to Brent Social Services on my behalf. You may know this lovely lady, as she works in close association with Charing Cross Hospital and St Mary's.

For the past couple of weeks the painkillers do not seem to be having the same effect, I don't know if my system has actually become immune to them (where before they would at least deaden temporarily the constant aggravating pain that always there in the background). Morning time was always the worst - takes me about 20 minutes to inch and ease my way gradually out of bed (my bed has become a dreaded torture chamber) - then there's the ordeal of getting dressed. Baths I have had to forego (as can't sit down in the bath). A shower is not quite such a task. Washing my hair, lifting a kettle, feeding the cat - whole heap of things that need bending or turning to any degree.
It's the sudden searing spasm pain that jolts, jars and literally locks - which is the worst of all - usually when getting out of bed (after been lying in same position for some time - that position being to my left side - can't even attempt trying to get to lie on my back) trying to bend - or getting in or out of the car. There have been times when I'm stuck with one leg out of the car and trying to move the other one even the tiniest fraction has just been unbearable (not in the leg, but in the lower back).
Today and yesterday, even when I'm sitting down doing nothing, these sudden jolting, jarring pains are coming and when I try to get up, rather than ease off the pain locks in and I literally cannot move - up, down, sideways - whatever. I had a cold before Christmas and every cough or sniff was hell (with the pain of the movement).

There has also been some [very worrying] occurrences of bleeding recently - usually on the days that the pains have been really bad - like today.

I was diagnosed in 2004 with breast cancer: lumpectomy and radiotherapy followed.
In 2009, a further breast cancer diagnosis - this time in other breast (but not connected). Surgery followed (and then a second op in 2 weeks after that, as the margins had to be widened) - Again, radiotherapy followed. I declined the recommended chemo (hormone tablets).

I'm sorry that this 'resumé' has proved so long, but as there are so many different departments/specialists/GPs/hospitals involved, it does mean a lot of repeating of questions and info and inevitably stuff that could well be important gets forgotten or, with limited time, left out altogether. Thank you for your patience.

I will just add, that I live on my own - and up until recently carrying on with my full-time work, not too far from where I live; bearing it out, you could say - but now am at the stage where I feel I am very nearly at the end of my tether with this situation, which is worsening day by day.


I tried to cover my medical history and present circumstances in as comprehensive an account as possible, in as short a space as possible. I also sent a copy of the email to my employers and to Angie, so that they are aware of all what's going on and kept up to date with progress (or not, as the case may be).
Even with that, I now realise there are certain pertinent things that I've missed out - like the NM Full Body Bone Scan, which proved normal, i.e. no cancer in the bones. I realise that that scan was specifically to check and eliminate the spread of cancer to the bones - but would not "an infection on one of my discs (bone!) have been picked up in such a scan? - unless, maybe if there is an infection it only occurred after that time.

Anyway, someone on the Appointment Desk at Charing Cross Hospital phoned me on Friday (27th) to say he had received my email and immediately forwarded it to his Supervisor, who forwarded it to the Consultant, who has consulted with someone else (maybe the Oncologist? - not sure) .. and someone (not sure which someone that is , but someone should be getting back to me by Monday (tomorrow) with a new date for my appointment, so I shouldn't have to wait till 2nd March to get seen. Result!

Also on Friday I received a letter (from Central Middx) giving an appointment date to see Gynae consultant there next Thursday. This is the same crowd (same consultant) who was involved with the hysteroscopy op (the painful one - which found no cyst and nothing wrong - but my where my Oncologist has recently said the MRI scan shows that the cyst is noticeably still there and I need to have a further op to have it removed!

Since that I have spoken with a friend of mine who is a retired nurse. She explained that it is not uncommon for a cyst to grow back, so I suppose that might go some way to solving that mystery.
She also reckons that if there is a problem with one of my discs it may be necessary to have an op to have the disc removed! Is there no end to this nightmare??!

Meanwhile, I have an appointment with my GP Tuesday morning to review whether fit yet to return to work or whether to have my exemption certificate extended yet again. Everything points to the latter.
Straight after that I have an appointment with Angie regarding the Disability application. That appointment was meant to be last Friday, but she contacted me to say she had to cancel that, make it Monday instead. Turns out John couldn't make Monday (he was going to pick me up and drive me there as, for one thing, he gets the free parking (which is a nightmare around there trying to find somewhere anyway). So, be seeing her on Tuesday at 12 o'clock in the cafe "office". heh heh ... Crazy place ... you'd have to see it to know what I mean - it's like something out of The Godfather with Angie holding court in her state of the art wheelchair and the queue of wheelchair-bound bods and walking-stick hobblers receiving favours and paying homage. She even has an interpreter with her who speaks something like 7 languages fluently. He is Moroccan. (he officially works for the company too). - the actual office is in Victoria, although used to be just next door to the cafe until they moved premises - that's how it came to be used as her "second office" in the first place. I tell ya, beats sitting in a stuffy office or waiting till your number comes up in a crowded Social Services office. Instead you can have a nice little informal chat over cappucino and lasagne. I love it! I'm actually quite looking forward to it.
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Re: Kitkat's KK Blog

Post by Kitkat on Wed 01 Feb 2012, 17:12

GP has ruled a further extension of two months.
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Re: Kitkat's KK Blog

Post by Kitkat on Thu 02 Feb 2012, 23:11

GP appointment last Tuesday - has extended my exemption from work for a further two months.

My appointment at hospital today (Gynaecology Dept - the guys involved with the nightmare hysteroscopy op). My Oncologist referred me back to them as the MRI scan(s) showed that the ovarian cyst is still there and he says it (the cyst) has to come out.

Was a hellish morning as no sleep last night with the pain - and this morning it took all the painful strength I could muster trying to get into the car to go there. Getting out when I got there was another ordeal. My biggest anxiety was that I would have to go flat on my back there for some kind of examination. By the time I got in there (eventually) there was no way I could sit down, let alone lie down. Had to stand propped up with magic wand (walking stick) for the duration.

Anyway, they told me that the cyst can stay, no need for an op to remove it; it's only very small (polyp) - it's been there for 3 years and still the same size. I said but my oncologist says it has to go. They said ..well he's an oncologist, he doesn't know about gynaecology (!) he's only worried that it might be connected to the breast cancer - and it's not. So there! (well, they didn't say 'so there' but that's how it came across). Also told me that the pain I experienced after the hysteroscopy must be because of the way I was lying for the op - said it would not have been anything that happened during the op as the hysteroscopy looked at the womb only and didn't go anywhere near my back.
As far as they're concerned I have now been discharged from their department and only need to have a check up in 6 months time to make sure the polyp is still the same as it is now.

I left there with some relief knowing at least I don't have to go through with that awful op procedure again, but no physical relief ... I had yet to manoevre back to the car and back into it! That was another hell. When I [eventually] got sitting down in the seat the pain soared and roared even while I was sitting. Had to sit there for 20 mins before starting the car up - and then when I did get home even longer and more painful task getting out of the car. I got out but had to stand for an age on one foot, one hand hanging on to the door and the other one with my magic wand propping me up. A Polish girl passing by came back to ask if I was okay and if she could help in any way. I thanked her but said really there was nothing she could do to help; I would be alright in a while. Once inside, took some Ibuprofen and it seems to have done the trick. The painkillers on their own don't seem to work anymore - I think I've been taking them for so long now I've become immune.

The next hospital appointment will be with Neurology Department at Charing Cross. (No word from them about an earlier date for that appt - even though I was assured someone would be contacting me in that regard by Monday - it's now Thursday ).

I met with Angie on Tuesday (the disability fix-it lady). She is arranging for any time I need to go to Charing Cross hospital that I will have special mobility transport to pick me up from home and take me back. (Oh, what a relief ... I was dreading just the thought of the journey there whichever way I was going to go). If at any time I have to go to St Mary's (which she had recommended above Central Middx if that op was needed) I will have the transport there too.

Well, that's about the long and the short of it for the moment.
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Re: Kitkat's KK Blog

Post by Kitkat on Sat 11 Feb 2012, 09:44

On 2nd February, I had a consultancy appointment (CMH) with Gynaecology Dept.

Was a hellish morning as no sleep night before with the pain (I have this one position that I "fix myself into" before sleeping - on my left side right near the edge of the bed and one hand placed in a fist in front of my chest (to stop me moving from that position when asleep - the slightest little movement from there brings jolts of pain around my lower back and right hip area. I must have moved somewhat from that position during the night because pain was bad right from getting up and it took all the painful strength I could muster trying to get into the car to go there. (I have to contort into some really weird positions just to get in, and ever so slowly - then once in there's the painful task of reaching out and trying to shut the huge, heavy door. Getting out when I got there was another ordeal. My biggest anxiety was that I would have to go flat on my back there for some kind of examination. By the time I got in there (eventually) there was no way I could sit down, let alone lie down. Had to stand propped up with magic wand (walking stick) for the duration.

Anyway, they have told me that the cyst can stay, no need for an op to remove it; it's only very small (polyp) - it's been there for 3 years and still the same size. I said but my oncologist says it has to go. They said ..well he's an oncologist, he's not an expert on gynaecology (!) he's only worried that it might be connected to the breast cancer - and it's not. Also suggested to me that the pain I experienced after the hysteroscopy must be because of the way I was lying for the op (which took about 15 minutes) - said it would not have been anything that happened during the op as the hysteroscopy looked at the womb only and didn't go anywhere near my back. (I am not happy with that explanation, but who am I to argue with the experts).
As far as they're concerned I have now been discharged from their department back to my GP and only need to have a check up in 6 months time to make sure the cyst is still the same as it is now.

I left there with some relief knowing at least I don't have to go through with that awful op procedure again, but no physical relief ... I had yet to manoevre back to the car and back into it! That was another hell. When I [eventually] got sitting down in the seat the pain soared and roared even while I was sitting. Had to sit there for 20 mins before starting the car up. I'm actually okay once I start driving - it's just all the befores and afters that give me gyp. Then when I did get home, even longer and more painful task getting out of the car. I got out slowly but had to stand for an age on one foot, one hand hanging on to the still open door and the other one with my magic wand propping me up till the pain died down. The tiniest little movement gave a searing jolt. A young girl passing by came back to ask if I was okay and if she could help in any way. I thanked her but said really there was nothing she could do to help; I would be alright in a while. Back inside eventually, I took some Ibuprofen and it seems to have done the trick, temporarily at least. The painkillers (Co-Dydramol) on their own don't seem to work anymore - I think I've been taking them for so long now I've become immune.

AC (the "Disability Fix-it Lady") has applied on my behalf for assessment for Disability Benefit. I am presently waiting to hear from Social Services in this regard. Ms C is also very kindly arranging for mobility transport to and from CCH on any occasion that I have to attend there.

My next appointment with Oncology (CMH) is on 20th March at Central Middlesex.
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Re: Kitkat's KK Blog

Post by Kitkat on Sat 11 Feb 2012, 09:50

Woke up this morning with headache, sore throat and rotten cold.

Under normal circumstances, a cold is just a cold - but every sniff, sneeze and cough at the moment aggravates the pain. Feeling rather sorry for myself this morning.
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Re: Kitkat's KK Blog

Post by Kitkat on Sun 12 Feb 2012, 00:57

I posted this link up elsewhere, where we were having a discussion about a couple who won millions of pounds on the Lottery. The guy was on Disability Living Allowance and had been for some time as he has osteoarthritis and something else which I'm not too sure of (I haven't seen all the details of the story, so it is all just hearsay at the moment). Being on the highest bracket, he is supplied with a car which he changes every 3 years, tax and insurance and service paid on that, along with other benefits freely offered. Here is the thing ...
Since his win he has refused to give up the DLA benefit, saying it is his entitlement and he doesn't see why he should. They have apparently bought a mansion in Ireland - but they do not live in it and still remain in the UK in the house they've always lived in. Why? ... Because in this country the DLA is not means tested, whereas in Ireland it is.

Something very, very wrong there.

Changes have been proposed which are due to be brought into play in 2013/14. What those changes are is yet to be confirmed, but hopefully will address the situation reported here.

Attached to this article are numerous anguished and harrowing real-life stories regarding the suffering and hardships that genuine claimants must endure, and what the changes mean to them. The article is dated June 2012, but the hundreds of comments that follow are still being added to up to this day.
The main aim of the proposed changes is intended to tackle the fraudulent scammers and scroungers of which there are far too many, well versed in the tricks and cons used to milk the system. These are the very people that no matter what changes are brought in, will still find a way to defraud the system - and those who are in genuine need and entitlement are the ones that suffer - as can be seen from reading many of the comments here:

http://www.disabilitynow.org.uk/latest-news2/medical-test-for-dla
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Re: Kitkat's KK Blog

Post by Kitkat on Fri 17 Feb 2012, 17:53

Crap day. Feel like crap. Everything is crap. Don't feel like talking to anyone today. Can't stop crying. My life right now is just big piece of CRAP!
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Re: Kitkat's KK Blog

Post by Umberto Cocopop on Sat 18 Feb 2012, 12:44

I'm sending you some positive energy KK. You'll feel better in the coming days.

And it's nothing to do with this: regression to the mean
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Re: Kitkat's KK Blog

Post by Kitkat on Sat 18 Feb 2012, 18:22

@Umberto Cocopop wrote:I'm sending you some positive energy KK.

Thank you, Umberto. and ... even though you say that in jest, you are still unwittingly doing it. 8)


@Umberto Cocopop wrote:And it's nothing to do with this: regression to the mean

No, it's nothing to do with that, but does have something to do with the very mean regression to the mean of others.
At long last, I got my "assessment" from Disability unit of Social Services. This consisted of a few questions read out by a clerk from the Department over the phone. Any digression from a black or white 'yes' or 'no' was frowned upon, ignored or dismissed as it would seem their computer recording method doesn't recognise any digression from the mean. lol My reply to the question of my ethnicity seemed to get their backs up also. (This question seems to be one of major importance to the task at hand). When pushed for an answer as to whether I am black, white, Chinese etc, I gave my reply as 'pink', I think their computer slapped a very black mark onto my application. Neutral All in all, it has been ruled that my situation does not "meet the criteria" for the services they provide. Although recognised that I do have a severe existing mobility problem, it seems my disability problems are medically related - and I should go to my GP for assistance! Their department deals with "personal care", where they pay an agency for someone to come round to your house and help out with "personal care" where needed. In other words, because I'm not prepared to have someone come around on a regular basis to help me get dressed, get me in an out of the bath, get some shopping etc - and basically wipe my ar*e for me, I am not in need of their services. Nice to know however that should be circumstances worsen there is room for review. They are sending me their OT catalogue (occupational therapy) to see what various gadgets and aids are available - which I have to fork out for myself. Apparently though, if I had applied in my present circumstances a couple of years ago - before the recent changes came into force, I would have come within the eligiblity bracket and there would have been no problem in paying someone to come maybe once or twice a week to sweep/wash the floor, hoover and put things in and out of the washing machine etc, things that I have the greatest difficulty with at the moment.
The fact that I have been in full-time employment since I was 17, paid full tax and NI contributions all those years (even for the year that I worked in Libya I still kept up my contributions here), and never, ever once in all that time had call or need to avail of any of the services that these contributions have paid towards ... until now ... means sweet FA.

On top of that, I received a letter from my employers inviting me to attend an 'Absence Management Meeting' at their offices on Tuesday. The purpose, allegedly, to obtain some further details regarding my current diagnosis of lower back pain and any other medical problems that may be causing or contributing to my absence. It will also serve to allow them to understand whether there are any reasonable steps that may be taken to facilitate my return, and to provide further clarity as to when I may be able to return to work in my current role. I am reminded that "the size and operational demands of the firm are such that it is difficult to cope with long periods of absence". They also requested my consent to obtain a Medical Report from my GP .. blah blah.
Best of all, I am informed that the terms of my employment do not entitle me to contractual sick pay, but "to assist me" they have been making discretionary payments equivalent to my salary during my absence. Regrettably, owing to the limited resources at their disposal, they cannot continue to make this discretionary payment and this will not be paid after 29th Feb. From 1st March I will be entitled to statutory sick pay.

and ... to really top it all .. my faithful Mister Grabbit is banjaxed. The spring went on it yesterday.
My cousin reckons there's a shop near him that sells something similar, although not quite as versatile as my Mister Grabbit. He is going to have a look today and will get one for me if they still have them. I'll be heading over to his house tomorrow as he's cooking up a Sunday roast with all the trimmings ... so hopefully he will have been able to get one.
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Re: Kitkat's KK Blog

Post by Feather on Sat 18 Feb 2012, 22:06

Things are not improving for you in the slightest, kk. I'm sorry about the negative response you have had re disability.
How long do you have to wait for the result of your most recent blood test? xxx


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Re: Kitkat's KK Blog

Post by Kitkat on Sun 19 Feb 2012, 18:20

@Feather wrote:Things are not improving for you in the slightest, kk. I'm sorry about the negative response you have had re disability.
How long do you have to wait for the result of your most recent blood test? xxx

The recent blood test was only to check for cholesterol level - and in fact I had to cancel that appointment because had a rotten cold and literally had not slept a wink the night before (every cough, sneeze and sniff jolted the pain and I couldn't get lying down at all). Had to break my fast in the night to eat something to go with the painkillers. Postponed till the 27th now.

Just back from cousin's now in a much better frame of mind. Got me new 'Mister Grabbit' (although I'll have to think of a new name for this one). There's still a light at the end of the tunnel. Angie actually phoned me while I was at my cousin's. I had emailed her giving details of my "assessment". Didn't know that she was actually in hospital recovering from a major operation. Shocked She emailed me back at 11.30 at night, telling me not to worry too much, that there was still room for negotiation and at least now I am in "the system" with a reference number etc.
She then went on to tell me that she was actually in hospital recovering from a blood transfusion and other things over the last few days! She had her little mini laptop there with her and apparently when the docs saw her working away on it they asked her what the hell she was doing, she supposed to be resting ... She said - these people need me and I am able to help and will do in any way I can. They moved her into a side room after that. What a woman.

Anyway, she told me on the phone today she was appalled at the way I was treated and at the unprofessional way that this "assessment" was carried out and will be contacting that particular department in very strong terms to let them know. She says there are other departments to go through (that was Adult Services for mobility). She is going to apply now through Occupational Therapy detailing my circumstances and insist that I have a proper assessment where someone comes to my home to assess precisely what my immediate needs are. We will be meeting to speak sometime next week.
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Re: Kitkat's KK Blog

Post by Feather on Sun 19 Feb 2012, 20:44

As you say--what a woman! It must be good to know she's rooting for you. I've forgotten who she is. Is she at that place where you go once a month?


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