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Here we go again

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Candlelight.kk
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Re: Here we go again

Post by Candlelight.kk on Sat 6 May 2017 - 22:09

11 Aug 2009


Thank you Stardust for the healing thoughts - and especially for the candles.  :grin:  There are sooo many people sending healing thoughts my way these days, and I am so grateful and receptively aware of all. Thanks to all. It is very much appreciated and of immense help (both physical and emotional).

The treatment hasn't actually started yet ... cannot begin until the wound(s) have healed, which is normally around about 2 weeks after the actual operation - hence the hosp appt with the specialists after 2 weeks. However, because I had to have a further op (after the 2 weeks) this means that the radiotherapy treatment will be delayed further. My (2nd) 2 weeks after-op appt is on the 18th. Hopefully after that I should have some indication as to when the treatment will start, and for how long. I am told that this time round I should be taking chemo drugs also - but this part of it I will be declining, which decision is of course of my own making and personal right.

At the moment the strong painkillers that I have been taking (sent home with from the hospital) are beginning to cause other problems (side effects) - the build-up in my system is now really starting to take effect big time, and so I have decided to stop taking these painkillers. (Today was a particularly bad day). Starting from tomorrow, I shall gradually cut down the dosage and the frequency. I have found that quite often the side effects of drugs are invariably far worse than the ailment they are supposed to be treating - well certainly for me anyway. My pain threshold is pretty high anyway, so that side of it doesn't really pose too much of a problem. They served their purpose at the beginning when things were pretty raw - and I have to say that the second time round (the op last Wednesday) seemed to carry with it a lot more discomfort afterwards than the first one.
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Re: Here we go again

Post by Stardust on Sat 6 May 2017 - 22:28

You sound strong enough to overcome any obstacle, Candlelight.
If anyone can plant the flag on the highest mountain, it's you.
May good vibrations surround you during this difficult time
and help your healing process.



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Re: Here we go again

Post by Candlelight.kk on Sat 6 May 2017 - 22:31

13 Aug 2009


emergency doc today. I had already made appt because of the strange shape and colour that suddenly seemed to be yesterday. Also very hot and sharp, stinging pain.

Have stopped the painkillers because of the horrible side-effects which I believe they doing to me - and apart from the pain yesterday I did feel more like myself - except felt something wrong as I say because of the above.

Woke up last night (oh several times) but woke up with nightie absolutely ringing wet all round breast part. Dark colour nightie so couldn't tell if blood or what. Stinging pain still there. Bad.
Changed nightie. Got up had cup of tea. Woke up about an hour later - this one ringing wet as well. This time I could see it's like a diluted blood. Changed again and woken up. Little spot of blood but that it.
Had cup of tea - and immediately nightie and dressing gown also became ringing wet again - it's like the tea has gone straight through there!

Anyway, seeing emergency doc 10:50. Will see what they say. Not going work today.
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Re: Here we go again

Post by Candlelight.kk on Sat 6 May 2017 - 22:33

13 Aug 2009


So it seems I have what they call a Roaring Infection. Inside. All over the breast. The drenching last night was actually pus.
Even while I sat waiting in the doc's surgery I became drenched. Given antibiotics and the nurse put a loose dressing on (which soaked already). Have to go have this changed every day until my hosp appt on Tuesday. Cannot go back to work at least before then. Surgery not open over the weekend so have to go into Casualty each day then to have fresh dressing administered. (The nurse was going to give me a dressing pack to take home with me, but asked that I keep quiet about it because apparently they're not supposed to - as works out quite expensive for them ) As it turned out the box was empty anyway. She went to try and find more but couldn't, so no luck there. Just have to go back each day and see what they say at my specialist appt on Tuesday.

I asked her if this meant that the radiotherapy treatment would be delayed. She seemed to think not, so that's something at least.

Simply day by day.
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Candlelight.kk
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Re: Here we go again

Post by Candlelight.kk on Sat 6 May 2017 - 22:36

14 Aug 2009


Macmillan Nurse phoned after just checking to make sure about appt on Tuesday. I told her about the infection etc, and she shocked that they've said I have to go into Casualty to get dressing changed. she checked to see if they informed about it but no .. so got back to me and has arranged for the CCT - which is a special team of nurses attached to the hospital to come out to see me at home tomorrow. They will check everything and also leave me some dressing swabs etc that I can do myself. She has given me their number also in case i need anything else.

Asked her if infection will delay the radiotherapy - and she tells me that no, the RT will not start for about a month yet anyway! to give a chance for everything to be well healed and settled. (Well, I got that one wrong...)
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 15:14

Have you mentioned Muncaster to any of the doctors/nurses? If you have to have radiotherapy
once a week, it might be possible for you to go if your session was on a Wed or Thurs. We're
in Cumbria Fri--Tues. You would have to be feeling up to it, of course. You COULD have your
complete course without a break AND get the trip. :D


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Candlelight.kk
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 15:20

Not quite that simple, Feather.
They tell me the radiotherapy will be as last time, i.e. every day for (about 5-6 weeks I believe) but with a break at weekends for a rest.

Last time Easter came in the middle of my course and did not have to go for treatment on Good Friday and Easter Monday. Didn't seem to make any much difference (except that I had a nice long rest between sessions, so maybe if it comes to it i could arrange for those 3 days. Can only wait and see anyway.

What I'm hoping now is that RT won't be starting until AFTER Muncaster. Fingers crossed.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 15:22

After reading your post about the delay, I was hoping the same as you.
I'm sure you would enjoy Muncaster better if it was before your treatment.
Is there any improvement with the infection? Early days yet, I suppose.


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Re: Here we go again

Post by lar-lar on Sun 7 May 2017 - 15:27

How are you today KK?

Voldsgaard
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Re: Here we go again

Post by Voldsgaard on Sun 7 May 2017 - 15:28

Hi KK

Just wanted to pop in to tell you how sorry I am, and that I have been thinking about you a lot since Myra told me that you have to go through it all again...

I will be sending you healing thought with wishes on a speedy recovery...

hugs,
C


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Candlelight.kk
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 15:33

Hi Voldsy,

Thank you for your kind thoughts.
I can't tell you how good it is to see your words here. :D
V, you have never been out of my thoughts, as with all the members of our family.
Each and every one of you holds a very special place in my heart, and always will. xxx
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Re: Here we go again

Post by lar-lar on Sun 7 May 2017 - 15:36

Hello Claus,it's good to hear from you,it's been too long.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 15:38

Hello again, Voldsy! You can't avoid me . I'm everywhere.Lovely to see you here.x Smile


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Candlelight.kk
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 15:39

I have my Planning Appointment on Tuesday (8th) which is where they assess precisely where the Radiotherapy is going to go, how much of it I will need and for how long. This will entail further scans, a lot of measuring and drawing all over me to poinpoint the precise area for treatment.

Before that, on Monday I have to see my GP Practice Nurse, who also works in the Casualty Walk-In Centre of another hospital (more local to me) to have my dressing changed and a general check-up on the outward healing process. I have had so many regular visits with her recently that we've actually now become friends. She told me her life history basically, of how she came to England from Malaysia in 1970, and how her intention had always been to go into Law, which was the expected profession for her to follow in the family's footsteps. However, many circumstances dictated otherwise and she ended up in the Nursing profession, which she loves.
It turns out that she has an appointment herself at the hospital that I am going to on the same day - Tuesday (something to do with her shoulder) at more or less the same time as I am due to be there, so I'll be giving her a lift to the hospital - which is quite a bit of a difficult journey whichever mode of transport you use to get there from where I live.

I'm hoping they will be able to give me a date on Tuesday as to when I'll be starting the treatment, although probably not ... I guess it'll be a different department again that decides that. So long as it's after the 22nd September, I'll be happy (well ... as happy as anyone can be in the circumstances ) ... I just don't want it to clash with our 'holiday' in Muncaster.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 15:42

I can assure you, Candlelight, the two of us don't want them to clash either. It would
ruin everything for us. Surely they can't do that to the three of us.I'm thinking positively
and visualising all of us there together. I'm sure lar-lar is too. xxx.


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Candlelight.kk
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 16:04

Thu, 17 Sep 2009


Treatment will be starting on 5th October.
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 16:11

25 Sep 2009


Well, I had an appointment at the Hospital yesterday to go over the 'markings' (which they did at the Planning Appointment). The markings are literally tatoos (some of them permanent - I still have very small dots or arrows tatooed on me from the last time round). At the Planning Appointment most of the time was spent with me having to lie in the weirdest positions with my head in a 'cup' and my arm strung up through a specially measured place, and having to stay completely still in those given places while 3 or 4 people measured me with rulers and lasers, calling out these mathematical calculations and recording them on the computer. This is all to ensure that the radioactive inputs go in exactly the right directions and cover the correct area. So, when I start the treatment, each day before the big space machine starts whirring and moving all over the place (so noisy) they have to make sure that I am lying in that precise calculated position, so these measurements are painstakingly called out, and I'll be moved a half milometre here, third of a milometre there .... to get into the proper position. This takes about 15-20 minutes every day before the machine starts. They all have to be out of the room when the machine is in operation and you can just see their faces looking in through a little window. They usually have music playing for you while its going too. (Last time it was George Michael EVERY TIME!) Hope they've changed the record this year - in fact I hope they have the music at Hammersmith Hosp where I'll be. It's quite hard staying perfectly still when this machine is whirring and birring and moving all around you. The music is a good distraction (even if it is George Michael )

Anyway, yesterday was supposed to be a last checking - this time with the machine - before treatment starts on the 5th. My appointment was at 10. I drove up there and arrived much too early, so not sure how long I was going to be there, I put 3 hours worth (£5.40) in the parking machine, just to be on the safe side.
Once there I was told, very apologetically, that there were some technical problems with the machine (now, why did that not particularly surprise me) and that the technicians were working on it, so I might have a bit of a wait, they not sure how long, probably wouldn't be sorted before midday and could even be all day in which case appt would have to be postponed to another day.
Nevertheless, they wanted to go over the markings and tatoos etc, without the machine at that stage. Well, the machine didn't get fixed, so to save arranging a further day's appointment, I have to go in an hour before the time allotted to start my first session on the 5th - and my first session will have to be there at Charing X hospital as the head radiographer (superintendent she calls herself) will be at that hospital on the 5th. All my sessions after that will be at Hammersmith.

So, I guess fingers crossed that the 'machine technical problems' which seem to follow me around everywhere, won't be happening on that day.
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 16:13

16 Jan 2010


I haven't written in here for a while now - in fact not since the radiotherapy treatment began (though I have been keeping up some diary bits and pieces elsewhere). Happily, my brother has been here all through that time - in fact he arrived the day before I was due to go into hospital for the initial result, (which I was secretly dreading going on my own) - up until today (six months later!) It was all very synchronistic how that came about, the timing of my brother arriving (who incidentally knew nothing of this at the time), the events that brought it about etc ... It was meant! Anyway, today my brother went off back to Saudi to start in a new job there.

The flat is now a very lonely, empty place and I'm feeling rather sad.

I now have another op imminent, I'm just waiting for the date to be confirmed. This will be an exploratory op, a hysteroscopy, which is a type of scan that checks in areas that the other scans do not necessarily pick up on. This has been recommended by my GP as over the Christmas holidays there were signs that maybe something is not quite right. Because of my history and indeed my mother's history, they just need to make sure and basically eliminate the possibility of a different type of cancer looming.

This op was actually recommended to me and a date arranged way back in March (before the breast tumour was discovered) as the same 'signs' appeared at that time, but I refused the op at the time - on the premise that 'if it's not broken ... etc'. However, now it seems that option is not open to me, it's non-negotiable. (My GP seems convinced that I may already have had cancer at that time - it was not too long after that that the regular mammogram check-up - supposedly the last one confirming my 5-year "all clear" proved positive). So, I await the date of yet another op which should be quite soon, and which if proves positive the worst scenario will mean more radiotherapy but this time chemotherapy as well. (I was recommended chemo tablets this time round which I strongly declined). I will probably be advised to re-think that decision this time if the worst comes to the worst, but until and if that situation arises there doesn't seem much point in dwelling on it. I don't think my views will have changed .. but will just have to wait and see.
I remain optimistic, as ever ...
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 16:16

I can't believe it. I have no words---but I send you much love .Don't be lonely,kk. Call me any time. You have my number.xxxxxx.


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Candlelight.kk
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 16:18

Thanks, Feather.

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Re: Here we go again

Post by Stardust on Sun 7 May 2017 - 16:20

Hello you two, Candlelight and Feather.

I can imagine how you miss your brother, Candlelight, especially after his presence throughout the last six months, but his heart will be with you. Thank goodness for the phone and internet which make it so easy to remain in contact with family and friends.

Staying positive and optimistic has been medically proven to help healing, Candlelight, so try to keep your spirits up. You know we're all thinking of you, lighting our evening candles and sending positive thoughts and vibrations your way.

Love, light and blessings.


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Candlelight.kk
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 16:23

18 Jan 2010


Thank you for your kind thoughts, Stardust. I'm afraid my candle routine - in fact any sort of routine that I might've had - has gone a little awry these last few months ... and yes, I believe strongly in the powers of positive thinking, always have done, although I have to admit to indulging in a few (short-lived) recent lapses in that regard... the odd little 'wallow'.

That said, I came across this article recently - entitled Smile! You've got Cancer ...
Here's the link:
http://www.guardian.co.uk/lifeandstyle/2010/jan/02/cancer-positive-thinking-barbara-ehrenreich

I must admit, [this time round anyway], I can identify and agree with quite a bit of what this lady has to say ... Well, of course, in every situation there are always those who tend to take things to the extreme, where plain old common sense seems to get lost in the fervour of their mission.
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Re: Here we go again

Post by Stardust on Sun 7 May 2017 - 16:26

That was a very long read, Candlelight, and the suppressed anger is nevertheless apparent, not surprisingly. There's a difference between keeping positive and 'embracing cancer with a smile'. How anyone can associate those two words 'embracing' and 'cancer' is beyond me. I find it very sad that some patients actually say that it opened their eyes to the joys of life and made them more appreciative of family and friends. Were they walking around with their eyes closed before? How anyone can call this horrendous disease a 'gift' is unbelievable!

None of the cancer sufferers close to me have ever thought this way, just as well since it would have been very hard to know how to respond to them. Most stay positive, like you, with obviously the occasional fear and tears, but what shines through like a beacon is the love, sharing feelings, talking, holding hands, love and more love and yet more love. Togetherness, trust, hope, smiles and even laughter. Interaction : 'You are me and I am you and though this burden has fallen on you this time, I'm always here to support you as you would me if the roles were reversed. We will be positive together and I will concentrate on surrounding you with healing energy and never-ending love.'

I expect there are still plenty of us still lighting the evening candles so the bright flame of healing light and energy can radiate towards those in need. Candlelight, when you need a little 'wallow' remember all those dancing little flames and may your heart fill with the love and strength we are all sending out.


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Re: Here we go again

Post by lar-lar on Sun 7 May 2017 - 16:28

RRRING,RING....tis me calling you...
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 16:49

Stardust wrote:I expect there are still plenty of us still lighting the evening candles

I like to think so.   Smile   Strength in numbers, as they say ...
I definitely intend getting back into the old routine by the end of this month.
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 16:51

lar-lar wrote:RRRING,RING....tis me calling you...

 :D  :D   That was a very welcome and uplifting call, lar-lar.  xxx
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Re: Here we go again

Post by lar-lar on Sun 7 May 2017 - 16:53

It was lovely to speak to you  :D

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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 16:59

... no matter how much that trickster SatNav woman might try and make it !

Eat your heart out Silly SatNav Woman. We made it without you ... eventually.
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Re: Here we go again

Post by lar-lar on Sun 7 May 2017 - 17:00

Good job we didn't listen to her when she did eventually speak. We would of spent the night with the cows, in lanes, and worse of all...she told us to take turns when there wasn't any turns!
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 17:02

22 Feb 2010


I never could quite understand why people refer to cancer as "a battle", the struggle for survival, and so on ... I have certainly never looked upon it that way - until now, that is.
Although my struggle is not with the illness ... but moreso the countless mistakes and blunders (some of which could even be life-threatening) that occur between the various medics, hospitals, GP's, and in particular NHS administration (botched up appointments, mislaid files, mix-ups and delays). THIS is where my battle exists. Yes, it's happening AGAIN, the memories come flooding back from first time round ... and it's beginning to look very much like a definite 'Here we go again' ... I'm not sure if I've got the strength this time round to keep on top of the "struggle" ... certainly not at the moment, not sure if I even know where to start ...
It's just one battle I could well do without right now.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 17:05

I think you are very brave, Candlelight, and I know you will stay positive . That is your nature. Has any specific thing led you to post this today? pm me if you like. I'll be here. xxx.


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 17:30

Thanks Feather. No, it's not one specific thing, but a whole jungle of things, and to be honest I'm not feeling terribly brave or positive about anything.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 17:31

Words often sound so meaningless. I won't add any more here except to say I think about you every day and will you better.Love and hugs as aye.


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Re: Here we go again

Post by lar-lar on Sun 7 May 2017 - 17:33

Can you get on msn later? xx

Busy for most of the day - TXT ME IF YOU CAN XX
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 17:36

04 Apr 2010

At long last my "emergency referral" is sorted (at least I think so).

Honest to goodness, with FOUR hospitals involved

GP sends me to Hosp #2 (for some reason) for scans/tests
Follow up at Hospital #1 - Diagnosis lump is possibly cancerous - op needed lumpectomy
Sent for op at Hospital #2 -
follow-up appt Hosp #1 - cancer confirmed, tumour removed - but another op needed because not all removed - margin was wrong - 2nd op would be next morning - and would be at Hosp # 1.
6 weeks daily Radiotherapy to follow (and chemo tablets - which I refused) at Hosp # 3 where consultancies and planning etc conducted - but actual daily Radiotherapy treatment would be at Hosp # 4 (which was a bit easier to get to)

Hosp #3 - Radiotherapy Consultant says happy with the end result of treatment BUT very concerned about the other possibility (which of course is not his department, but wants to be kept informed)


and the threat of a FIFTH being brought in - since end of DECEMBER last year this has been going on. (The ops and radiotherapy treatment were from August through to October)

Basically, the reason for the supposed "urgency" is .. that way back then there was a 'concern' that (GP and also Radiologist) that there might possibly be signs of cancer somewhere else (same as my mum had) other than the breast cancer that has been treated apparently satisfactorily (and also intimates that was just as well I refused the chemo tablets (which had been advised and recommended by all - including him) if these concerns turn out to be positive)

After SO many [bleep]-ups with mixed up appointments, wrong hospitals, double-ups etc etc ... my GP got so fed up with all the shenanigans that she decided to send the referral to ANOTHER hospital - one that I had no involvement with yet. Only THEN do I get the initial appointment confirmed at Hospital # 1 (where all my files are etc). Hospital number 2 phones to tell me this (and the confirming letter comes from Hosp # 3) ... So ... still not holding my breath, but my 'urgent referral' is now fixed for this Thursday, 8th - at Hosp # 1 (which I understand will be scans/tests and a consultation).

So anyway ... whatever the eventual outcome, I have everything recorded in writing. I gave up long ago trying to keep A,B,C etc informed with what the other is doing - that should be their job ... I'm tired of it all, I'm just going with the flow.

(I honestly feel deep down that if there WAS any urgency before - that has now disappeared / rectified itself / whatever ... I've had various forms of 'healing' in the interim - who knows .. maybe all these delays and mix-ups were meant to be ...
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 17:46

I've just read your post. What a disgrace, keeping you waiting all this time! If something is "urgent", then it needs immediate attention. That's just common sense. No wonder you're fed up with it all. The healing is a good thing. I do my little bit every night and try to send positive vibes--if that's the right word-- to you . I also pray that you will be all right. To be honest, I think I'm doing it for me as well as you cos your trouble makes me so sad. Life is full of trials sometimes but one thing I do know is that you deserve to be rid of this awful thing once and for all. All the very best for Thursday. I'm thinking of you, my dear friend. Love you.


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 17:53

08 Apr 2010


Well, talk about going from one extreme to the other...

Finally got my appointment today - scans etc and then consultancy with the specialist. There is apparently "something" on one of my ovaries .. "could be just a cyst" (yes, well I've heard that before ). Anyway, needs an op to investigate.. "probably in about 3 weeks' time".
Well, I wasn't long back into work after leaving the hospital when the call came to say the op date has been fixed for this Monday, 12th - with the pre-assessment on Saturday, 10th, 2 days away .

So ... I guess it's a case now of 'watch this space' ... again.

Oh, and to top that - when I got back to my car (after 2 and a half hours in the hospital) found I'd got a parking ticket.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 17:55

Hello, Candlelight. You must be glad today is nearly over. I think it's good that you don't have to wait long for the exploratory op. There would be no benefit in waiting. The sooner it's done, the better. Each day passes no matter what. Think of yourself as well and strong, with all this behind you. That's how I'm picturing you every day.
I'm willing you happy and totally healthy cos that's what you deserve,pet. Love and spirit hugs. Feather.xxxxxx.


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Re: Here we go again

Post by lar-lar on Sun 7 May 2017 - 17:57

I agree with you Feather, waiting 3 weeks would be cruel to the mind. Candlelight, we are with you on your journey, not as close as we would like in person but our hearts are close with you. xx
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Re: Here we go again

Post by Pixie1970 on Sun 7 May 2017 - 18:01

Hiya Candlelight

Sorry to read about your continuing troubles As people have said, it is better to be seen as soon as you are than to have weeks of wondering. Keep positive and know that so many people are praying for you.

Love Pixie xXx


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 18:33

10 Apr 2010


3 hours in the hospital today for my pre-op assessment - mainly because my file is so packed full that it took the greater part of that time to go through.

At least all the pre-checks proved fine - ecg (heart), blood pressure etc are all "perfectly normal".

Have to go in to the hosp at 7.30 on Monday morning.

A weird thing - I got a text today from my ex (who knows about the hospital business)

all it said was pg2

I texted back to ask him what does pg2 mean? He hadn't a clue, as he had not sent me a text - but his 17 month old baby had been playing with his mobile phone. He reckons it must be baby speak for 'good luck'.

I said it must be a sign! lol - My mother's letters were littered with PG - all over the place, something she said quite a lot adding on to things she would be talking about (meaning 'please god') - also TG (meaning thank god).
Well, I like to think she had something to do with it anyway. She does seem to be very adept at messing around with phones. (she got involved with my last op as well - the two phones that went off simultaneously in the hospital when I had that "turn" at the same time that the bleeper machine turned itself off. My brother and my friend's phones - which were both switched off at the time)

Recently in hospital, I had a bad reaction to an anti-nausea drug they decided to pump into me (without asking me beforehand). Was pandemonium in the hospital with docs and nurses flapping all over the place. Oxygen mask etc and machines beeping all over the place. At same time my visitors' mobile phones both rang (inexplicably as they both insisted they were turned off and didn't touch them anyway). I'm also told that the 'beeping machine' turned itself off at one stage with no-one near it. Surgeon later wrote on my notes that patient had 'an out-of-body experience'. NO! This is something I have to dispute with him when I get the chance.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 18:35

There are no words, Candlelight, but I wish you all the very very best for tomorrow. I'll be with you in my thoughts.

Here's something to make you smile----xxxxxx.



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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 18:38

15 Apr 2010


So, they found absolutely nothing! The 'something' that they investigating that 'might just be a cyst' etc ... didn't exist! Good news yes, but I went through all that for nothing. Having to fast from 12 midnight night before - come 4 o'clock, still in the Recovery Room, was starving and soooo looking forward to the promised cuppa tea and corned beef & pickle sandwich. It arrived and the nurse trying to fix up the wheelie table to put across the bed, asked me to hold end of table while she fiddled with the knobs to raise it or whatever. I went to grip it but could only use one hand cos other hand only went so far as fixed to drip and the wire must've been caught up in something. Next thing table tilted and I watched in slow motion horror as the whole contents fell to the floor and scattered everywhere (luckily was empty space ready for a bed to be wheeled in) So, had to stay starving for another while - was a good hour before the next sandwich/tea arrived. Meantime the bed opposite, the woman's husband visiting took a funny turn - went into shock as obviously they had just been given bad news, he went white as a ghost and they wheeled in a bed for him! and went to wheel it into the empty space beside me but of course it wasn't empty anymore - the nurse had gone to get cleaning stuff - so they had to wheel him into the only other empty space - number 13 which for some reason had been left empty (wonder why). Poor lad ... but then I had to watch while HE got given a cup of tea and I still hadn't had anything.

Hosp gave me a cert for a week off work, so definitely going to make the most of that. I feel absolutely fine, save for bit of a sore throat (from the anaesthetic) and apparently I'm a bit 'dopier' than usual, also effect of the anaesthetic.
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 18:42

15 Apr 2010


Thanks to all for your thoughts and wishes. They really are very much appreciated. I'm so sick of hospitals, theatres, drips, oxygen masks etc. I really have the greatest admiration for all the people who work in these places, you really need to be made of special stuff to do so. I know I couldn't. I hate the places.

I woke up from the op in the Recovery Room with the most excruciating pain I've ever experienced in my life - it was coming at intervals in a sort of ring around my body and with every horrendous wave that hit me I was wriggling and writhing with the pain and kept ending up down the end of the bed with my legs hanging out over the end. Out came the oxygen mask again and a group of various different faces kept appearing round my bed. They attached a drip needle to my hand and kept putting all sorts of different solutions into the drip bag and asking is that any better. I flinched when I heard the name Cyclazene mentioned (the thing that I had the bad reaction to with the first op) but it turned out this was being administered to the person in the bed next to me. All I could do at the time was wait for the next 'wave' to hit and each time was just as unbearable as the last. I'm not sure how long it went on for, but at one stage I heard someone ask are the intervals between pain getting longer and yes it eventually turned out that I was waiting a longer time before the next one. Then I heard someone ask again how is the pain now and I said d'you know what, I haven't had one since the last time you asked - and she said oh that's marvellous, it must be a good 4 or 5 minutes since your last one. And it turned out I had no more after that - stopped completely just like that. It was then that they told me I could tolerate Paracetemol, so obviously that must've been the last thing they tried me with, a paracetemol based solution. I looked at the clock and it was 5 to 1. I had gone into theatre at 10 to 11. Apart from being starving and gasping for a cuppa tea, I felt fine.
For a number of days before I went into the hospital I had a really bad [what I thought was] migraine, which on the day was really bad. Still suffering from it now, but I'm thinking now it could actually be sinusitis rather than migraine. (looked it up)
I can pinpoint the start of the pain at a point just to the left of the middle of my forehead and goes right through one of my eyes, sharp and constant. Whichever one it is I guess it's most likely anxiety/stress related. Anyway, at least now I know I can take paracetemol , so got some and it's taken the edge off but still there in the background. Apart from that I'm just so glad it's all over now. Like I said, they found nothing, not even a polyp that might be just a cyst - absolutely nothing, so basically I've gone through all this for flamin' nothing. Whatever they 'saw' last Thursday which had me thrust into theatre with such damn urgency seems to have disappeared with all trace since then??? Right... so either they got it very wrong - gp's and two separate hospitals - or ... perhaps the healing has worked from 'another source'. Bit of a mystery really .. and I do love mysteries.
I certainly intend to check into this further though - at least seek out the 'evidence' that they had that 'something' was there. Did they make a mistake? It's certainly been known. For example, one of the questions that I was asked before going into theatre (heaps of questions and form filling from loads of different people) was - How long have you been on the Timoxifen? She had my file in front of her and was referring to it. If she'd read it properly she would know that I've never been on Timoxifen - it was recommended, but I declined.

I just hope I don't have to see the inside of a hospital again for a very long, long time.
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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 18:46

19 Apr 2010


Well, seems now that it's far from 'over' as I had first gathered. Went to GP this morning (2 flamin' hours waiting amidst all the screaming babies and scuttling kids) - at least had chance to get some reading done. (I'm re-reading McCarthy's Bar at the moment)
Hospital signed me off work for a week and said if I need more to go to GP. Well I do and I did - not because of any after effects of the op, but the constant headache has not dissipated in the least, no way could I work with this monster - seems it is sinus connected .. rhinitis or something of that ilk. Got painkillers prescription (Co-Codamol - paracetamol based!) and a further certificate for a further 3 days.
Obviously mentioned the op and how they found "nothing" and seems went through all that torment for nowt - BUT I'm told now apparently the histology report is yet to follow. So ... more waiting and wondering ...
So much for thinking I was finished with hospitals etc ...
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 19:37

They must have done a biopsy anyway even when they found nothing so the chances that the Histology will show something untoward seem to me to be very slim. If there's nothing on the ovary, then surely carrying out a Histology exam must just be routine in the circumstances.


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 19:40

01 Nov 2010


I haven't posted in here for some time - mainly because of all the hitches and hassles that have been involved with results not being available, bad administration and lack of communication between all departments involved in my case (i.e. Surgery, Radiotherapy, Histology, Consultancy, - where one doesn't seem to know what the other is doing). Stress!! - that I really don't need right now.

I received a call from the hospital on 7th October - to tell me I had missed two Consultancy appointments at the hospital !! First I had heard of them - first one was for 10th August (!) and the second one I had apparently missed for 5th October. So, a further appointment made to see the Consultants and Specialists on 2nd November (3 whole months after the initial appointment was supposed to be!). That's tomorrow. (Tomorrow is also the date for the Hearing of my Appeal for the Congestion Charge fine that I got and which I am disputing most strongly - long story written up about somewhere else). Work is stressful ... my whole life is stressful at the moment. After tomorrow, hopefully I will be able to get back to some kind of normality ...
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 19:42

I dread every time I get a notification of a post in this thread. Thank goodness it's nothing worse than this. You have certainly gone through an extremely stressful time, Candlelight. You have coped marvellously with it all--or so it appears to us on the forums. No doubt you have had the worst moments too, in private. I know I would have. We're here for you but , in reality, there's very little we can do to help you--more's the pity. Try to concentrate on the fact that you have not had any more bad news. That is the important thing. Nothing else matters, does it? Waiting is infuriating, mixups are frustrating but no news is good news, dear friend. Lv you. xxx.


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 20:21

01 Nov 2010


Thank you Feather. It's cheered my heart to see your message here. xxx
Today I broke down at work, could not stop sobbing. I've done this before at home but never before in my work situation. I know it's the build-up inside of everything, everything that's going on in my life at the moment. I guess I'm full up of pent-up anxiety .. over many things .. and the worst part of it all is that I have no-one to talk to about it all ... I come home to an empty house ... after restless and sleepless nights I wake up to emptiness ... to face another day .. and yes for the first time in my life I am lonely and sad, and this is the one time in my life, the circumstances I find myself in, that I really don't want to be alone ... I'm finding it hard to cope with the stresses of work, and really desperately need to cut down on my hours but that means cutting down on finances which are already at a crucial minimum. Don't know where to turn or who to turn to. After the hospital tomorrow morning I think I will go along to the Maggie's Cancer Care Centre ... I need to talk to someone who understands ... I think they may advise that I should go along with the chemo that was recommended .. in which case I think I will definitely need to cut down work or perhaps stop altogether. They have people there who can advise on this sort of thing, benefits etc ... Physically, I don't feel good and haven't done for last week or so .. I look at myself in the mirror, my face looks haunted and gaunt ... like it had got before I first even knew there was anything wrong with me. Okay, age may be taking its toll too ... but either way I'm finding it harder and harder to stay strong in the face of all the adversity. Can't think very clearly today, but hopefully a visit there will make a difference.

It's helped a great deal just writing this down.
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Re: Here we go again

Post by Feather on Sun 7 May 2017 - 20:26

I think you have a very good idea there. Defo go to the cancer centre and spill out all your anxieties. You will feel huge relief cos the people there know and understand you and what is happening to you. The empty house thing is very hard to endure at any time but far more so when you have serious issues to contend with.If I were there with you now, we would end up joking and laughing. I just know we would. I can't take away your sadness or the causes of it, but having the company of someone who cares about you is more than half the battle. Candlelight, this is a dark and dismal time of year as well when many people get sad and depressed when they really have no reason to be so. Just yesterday morning I started to cry when I first got up and couldn't stop for some time. I bet there are thousands of people all over the world who are doing the same. Life is very daunting at times but I know and you know that you will be strong enough to beat it all. I'm there with you now, giving you the biggest hug. Share with me all your sadness and maybe some of the burden will leave you. Pass all you can of it to me. My shoulders are broad. I know I can't literally take all your anxieties away from you but I would if I could. My thoughts are with you. I hope you can feel them and that they comfort you tonight. Bless you, C.


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Re: Here we go again

Post by Candlelight.kk on Sun 7 May 2017 - 20:27

01 Nov 2010


Thank you my dear friend. I already have. lol - you're going to regret this you know ... cos I've just transferred all my misery and mood over your way ... and you know what... I can feel a tad of a smile on my face as I type this.

The 'Soap Sandwich' will be starting on telly in a min ... Corrie / Eastenders and then another Corrie. A distraction ... let's hope tonight's episodes are not too full of doom n gloom as is very often the case. ha ha

Thanks again Feather. Love ya loads xxx

    Current date/time is Wed 13 Dec 2017 - 5:21