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Here we go again

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Candlelight.kk
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Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 18:05

(originally posted on 01 Apr 2008)

I'm taking the liberty of including myself in the Healing Room today. My regular check-up appointment at hosp today has discovered another lump. It may just be fibric tissue, but have to have an Ultrasound to confirm. Will take about 2-3 weeks before that appointment, so just in the "not knowing" stage - again.
I'm keeping positive thoughts. Hope you'll spare some of yours too. Thanks. Candlelight xxx
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Re: Here we go again

Post by Stardust on Sat 06 May 2017, 18:06

Of course we will, Candlelight. Perhaps you should concentrate your energy on yourself at the moment ?
Loving positive healing thoughts flowing your way.


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Re: Here we go again

Post by elly on Sat 06 May 2017, 18:08

sending you all i can candlelight ,keep thinking positive thoughts
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Re: Here we go again

Post by Feather on Sat 06 May 2017, 18:09

My thoughts are with you too, Candlelight. Love and hugs.xxx.




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Re: Here we go again

Post by lynneandjohn on Sat 06 May 2017, 18:10

you are in my prayers candlelight. i know you have been here before and must be so taken aback to be going through the uncertainty and worry again. i have had 2 scans in the past and a mammogram. i was convinced my lump was serious. the waiting game is really stressful and i know how you will be feeling. sending healing thoughts and strength to you. god bless luv lynne
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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 18:11

Thank you all for your kind thoughts. The first lump did turn out to be a "serious" one, but was got rid of, so my hopes remain high. I've learned so much since that time. It's at times like this that I'm so thankful for my beliefs.
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Re: Here we go again

Post by liz on Sat 06 May 2017, 18:13

my prayers are there for you,and will light a candle as well.
keep thinking positive and stay strong,


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Re: Here we go again

Post by Voldsgaard on Sat 06 May 2017, 18:14

You are right Cathy - its probably nothing - but the wait for confirmation will be intolerable...

Love and light to you C...!


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Re: Here we go again

Post by lar-lar on Sat 06 May 2017, 18:16

Im sending positivity and prayers and love your way xxxstay strong.
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Re: Here we go again

Post by lynneandjohn on Sat 06 May 2017, 18:18

how are you bearing up candlelight. just want you to know we are all routing for you luv lynne
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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 18:19

Thanks everyone
Incredibly tired most of the time (something I remember from before) although could be something to do with the amount of time I spend on this computer. Cats are soppy and clingy too, although again they probably think I'm spending too much time on the comp as well, and want some attention for themselves!
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Re: Here we go again

Post by lynneandjohn on Sat 06 May 2017, 18:21

worry is tireing candlelight. could i ask if you don't mind what treatment did you have last time. please tell me to mind my own business if i offend you.
i do understand the worry and fear. my mum had a lumpectomy 2 years back and worries everytime her check is due. who would'nt. i got the all clear a fortnight before losing john. he was so relieved.
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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 18:23

I had a course of radiotherapy treatment, every day for 8 weeks (not weekends). The treatment itself was only 15 minutes, but usually long waits hanging around in the hospital waiting room before hand. There were only 2 machines to treat so many, and sometimes one would be out of operation. And each day before the actual radiotherapy you had to go through the rigmarole of being measured so precisely with laser beams and radiologists drawing all over you (to make sure that the radiation hit the exact spot. While all this was happening you had to stay rigidly still, if you had an itchy nose that's too bad, the slightest movement meant having to go through the measuring all over again.
When they got the measurement just right they would then leave the room and look through a little window, through there they controlled the monstrosity of a machine that would then start whirring and moving all around you. Again you had to stay absolutely still in the position that you were left.
A nice touch was that before they left the room they would put on a tape of music for me - but their choice of music was rather limited! Much as I like George Michael it seemed to be the only tape they had. Now whenever I hear George Michael singing it reminds me of that monster space machine!
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Re: Here we go again

Post by lynneandjohn on Sat 06 May 2017, 18:25

oh cathy it sounds gruelling. you must be all over the place but hang in there and keep strong. i had to laugh as i love goerge. i went to see him i think 2 years back now,on his tour. amazing. john used to be like this . my fave is "as" which i send to john when i sing it.

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Re: Here we go again

Post by sweet-william on Sat 06 May 2017, 18:27

I'm only logging on & reading all this now.... How awful, I'm shocked, I didn't know Cath, my thoughts and positive thinking is with you. You are such a strong person with great positive thoughts! Grandad is with you today as I send this, as its the 11th. All my love & hugs to you as always. xxxx
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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 18:28

Thank you, Sweet William, and lovely to see you here again (Sweet William is my beautiful darling niece)
Yes, I'm very much aware that grandad is around, and know that he is my special protector - and protector of all the family. He's very much with us all and aware of all us - particularly with you when you're driving in your car!
Much love and hugs to you, Tweety, and please pass on my love to all over there - especially to your Mum (who's feeling a little bit down at the moment).

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Re: Here we go again

Post by sweet-william on Sat 06 May 2017, 18:30

Thank you so much Candlelight for such a beautiful message, meant so much to me! Thinking of you....... love and hugs to you xxxx
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Re: Here we go again

Post by louby loo on Sat 06 May 2017, 18:33

my prayers and thoughts are with you cat take care love louby xx welcome sweet william enjoy this site its lovely louby xx

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Re: Here we go again

Post by sweet-william on Sat 06 May 2017, 18:35

Thank you very much Louby, that's very nice of you to say. Sweet-william xx
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Re: Here we go again

Post by louby loo on Sat 06 May 2017, 18:37

aww your very welcome sweet william you will love it here what a lovely lady cat is but i dont need to tell you that lol take care louby xx
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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 18:40

Got a letter yesterday with appointment date at the hosp to see the specialist - 15th July. No appointment yet for the ultrasound. Title of this thread 'Here we go again ...' The telephone number on the letter 'any queries about your appt phone this number, any of our advisers very happy to speak to you during office hours, after which speak to our answerphone, leaving your name, hospital number and tel number, we will get straight back to you.' I rang the number to see if get any info about the ulstrasound appt, knowing full well from previous experience that NO-ONE EVER ANSWERS, EVER. You always go straight through to the answermachine whatever time of day it is. Yesterday I rang 4 times and left 3 messages with my details for them to call back. Nothing. Today rang 4 times. Still nothing, but doesn't surprise me in the least. This is typical of the sort of the treatment I experienced with the NHS 4 years ago, all recorded in my own personal file 3 inches thick. With 4 hospitals involved, regularly changing specialists and a horrendously incompetent GP (ex GP who I've since discovered is known in the medical profession as "Doctor Death" and has a number of ex-patients currently suing him (unsuccessfully so far), lack of communication between all concerned, lost files, bungled appointments, mix-up of patient details, the list is endless. I've lost count of the number of times I turned up at hosp for appointments, only to be told appt cancelled, or not recorded, go home wait for another - or phone that 'ghost phone' to make another appt. All the letters come from one hosp for appts at another, but if you phone the main number there you're told we are just administration, phone 'the ghost phone' (which is at the 2nd hosp where I have my appts and see the specialist 'team'). The 3rd hospital was where I was sent for my operation after being diagnosed (too long a waiting list at hospital number 2). Hospital no. 4 was where I went for my radiotherapy treatment as the only one at the time with the machines available. At that time I had a Macmillan nurse assigned to me - given a card 'Phone me any time with any problem at all, or even if you just need to talk to someone'. Another joke. Voicemail always, leave message, will ring you back. Never did.
When my appointment was eventually fixed for the Radiotherapy at hospital no. 4 (after mix-ups too numerous to go into here - in short, I was the one had to keep getting on to THEM as my whole case seemed to be lost and forgotten in the system altogether).
Eventually a date was fixed for St Patricks Day. (the op was on 27th Jan). I had to make extensive arrangements for time off work including organising an agency girl to cover the anticipated 2 months I would be off work). I turned up at hospital no. 4 to begin my sessions - only to be told my name was not on the computer. They had me down for 4th April. Frantically trying to get through by phone to ANYONE between the 4 hospitals to see what the hell was going on - the usual brick wall. Nobody. Then someone tells me they managed to get a message through to the specialist who had left a message back - forget about April 4th date - that I was to call her urgently. A worry had come up about a lymph node not taken into account, so treatment postponed until further examination and ultrasounds. Course no-one able to get through to her. She got another message through (how I don't know) to someone to tell me to go home and wait for her to call me at home. Don't know how I drove the car home through the traffic of London, because for the first time during this whole ordeal I found myself sobbing uncontrollably. Half way home my mobile rang. Stopped the car, it was the specialist. 'Come in tomorrow (hospital no. 2) for ultrasound, we quite worried...'. Went in, had the U/S, people there couldn't understand why.
Could find nothing. This is all just the tip of the iceberg. (obviously patients' records mixed up somewhere along the line). I had received appt letters in past with my name, time and date, and second page telling me to make sure I had a full bladder before making my way to the Maternity Department on that date!! and 3rd page had someone else's name and address. That poor person probably got a nasty shock in her letter telling her to go along to Oncology Dept. Anyway, to try and cut a very very long story short, after much of the same bedlam, I eventually started my radiotherapy May/June.
So ... when I say 'Here we go again ..' it's not really the obvious that I dread, it's more the involuntary involvement in the whole shoddy circus that surrounds it.
My thinking is that it can't possibly be as bad this time round. But I will keep you updated. :D
Candlelight's Circus Journal.
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Re: Here we go again

Post by Feather on Sat 06 May 2017, 20:35

Oh, Candlelight, that is so very shocking. What a fiasco! I'm lost for words. It's a disgrace.
Nobody should be treated like that. I hope things are different this time.love,Feather.xxxx.


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Re: Here we go again

Post by louby loo on Sat 06 May 2017, 20:37

gosh candelite thats awful a song came into mind has i read your post round and round the garden like a teddy bear one step two step will you ever get there was singing in my head slight change of words to the song dont know what you make of this ?? but its disgusting the way peeps are treated regarding hospitals and bless sobbing all the way home no one should have to go through this i will mention you in my prayers tonight take care louby xx
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Re: Here we go again

Post by liz on Sat 06 May 2017, 20:38

oh candlelight what a fiasco,Is it because of london being so big,
would you not be better looking further afield to see other hospital facilities.
xxx
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Re: Here we go again

Post by lynneandjohn on Sat 06 May 2017, 20:41

so sorry candlelight,it's just a disgrace. nobody should have to endure this nonsense. i really hope things improve and fast. our thoughts are with you, take care luv lynne
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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 20:43

liz wrote:oh candlelight what a fiasco,Is it because of london being so big,
would you not be better looking further afield to see other hospital facilities.
xxx

Not really an option, Liz - unless one can afford to go private.  Sad
I have to say though, that Hospital no. 4 where I had the radiotherapy treatment, Charing Cross, was by far the best one all round. The administration organisation overall and the caring staff there I am eternally grateful to.  It really is a lovely hospital.  It was there also that I was able to avail of the complementary therapy services offered by the wonderful people who give up their time voluntarily to offer services such as relaxing aromatherapy massage, reflexology and counselling to patients, particularly beneficial to the many terminally ill undergoing chemotherapy and radiotherapy treatments. 
It just so happens that this was the very hospital where my beloved Auntie Nora had passed away just a year before that, after a long stay where she had suffered a stroke in the recovery room following an operation.  So, not very happy memories connected there.  In fact it is her anniversary tomorrow, 17th April (5 years ago), and I will be writing up a little something in the Memorial page in her memory.
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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 20:46

30 Apr 2008

Well, as the title of this says, here we go again. I'm still waiting for my ultrasound appointment. Have received the date for the specialist appointment, that is not till 15th July. Was at the doc's last week. Up until then she not even aware that I'm awaiting any appointments as, again, no communication from the hospital to my GP at all. She is incensed over their handling of my case, and has promised to chase them up. I have an appt with her tomorrow (for something else) and will see if she's made any headway there.

Song title of the week 'I'm still Waiting' - Carly Simon (I think , or was it Diana Ross ....) Feather! Help me out with this one please
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Re: Here we go again

Post by lar-lar on Sat 06 May 2017, 20:48

With the worry you are having its so wrong to add further anxiety.You mentioned they only have two machines also,what the hell is this government doing?
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Re: Here we go again

Post by Feather on Sat 06 May 2017, 20:50

Sorry that song has me stumped. elly might know.
I hope you get your problems with the NHS sorted out
very soon.I think they're making you wait too long
for the next stage of your treatment. xxx.


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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 20:53

03 May 2008


Well it's been confirmed to me it was Diana Ross who sang it. At least I don't think I'll be having to change the tune to The Kinks 'Tired of Waiting'

My doc has written a letter to the Consultant at the hosp, enquiring as to the position, and given me a copy of her letter. She has also assured me that if it was thought to have been something really worth worrying about, then my appt with specialist would surely have not been set so far away.
Secretly, I'm also further assured, by a recent message given to me through a medium at a demonstration where the message was 'I have your mother here who passed of a cancer condition. She says you are worrying and dwelling on something that you don't yet know what the outcome is. She's telling you that you have no need to worry, it will be ok.' I'm assuming it is this particular situation she was talking about, as yes I may have plenty of other worries, but I've got a darned good idea of the outcome of most of 'em (that's why they're worrying in the first place! ha ha)
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Re: Here we go again

Post by lynneandjohn on Sat 06 May 2017, 20:57

so glad you got this message candlelight. i know it's not set in stone but it must be encouraging to say the least. hang in there. luv lynne
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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 20:59

19 May 2008


Well, finally got my ultrasound appointment date - 27th May. (8 weeks since being told to expect it). Oh well, at least I know now.
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Re: Here we go again

Post by Feather on Sat 06 May 2017, 21:00

Far too long a wait, Candlelight, but you are one stage further on now and that's a good thing. Love, Feather.


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Re: Here we go again

Post by lynneandjohn on Sat 06 May 2017, 21:02

we will be routing for you on this day candlelight. will you see the consultant later that day for the results.
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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 21:07

Radiotherapy

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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 21:10

27 May 2008


Result from the hospital today!



Scar tissue!

Thank you all for your thoughts.  😁 LOVE YA!
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Re: Here we go again

Post by Feather on Sat 06 May 2017, 21:13

Hey, Candlelight. I've been looking for this thread for a day or two but didn't find it. I was anxious to know the results. That is terrific news. Couldn't be better. What a relief for you and us too. Have a dram to celebrate, mate.  😁  😁 xxxxxx.


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Re: Here we go again

Post by lynneandjohn on Sat 06 May 2017, 21:18

so so pleased for you candlelight, the relief is emormous, i know. so good to have this news, Smile we are all so relieved for you. nows the time to treat yourself,you deserve it. Smile  Smile

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Re: Here we go again

Post by spiritlinker on Sat 06 May 2017, 21:20

That is great Candlelight
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Re: Here we go again

Post by lar-lar on Sat 06 May 2017, 21:22

When i come over to you for the gordon weekend i will get you a lovely celebrationary drink on behalf of all of us. Smile super news!

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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 21:26

27 Jul 2009


Just over 5 years have passed since my original cancer diagnosis.
My regular 6-monthly checks had just finished (after 5 years) but the docs said we'll put you down for one last check-up in 6 months time.
That's when it was discovered.

This time I didn't have to wait so long for results/tests/appointments etc. All rushed through pretty fast.
This time it's in the other breast - and not connected to the previous cancer.
This time under my arm was operated on too - nodes taken out.
This time the radiotherapy will be daily as before, possibly for about 5-6 weeks - with rest break at weekends (RT to start when wound has healed, usually about 2 weeks after op - Op was on 21st July)
but This time chemotherapy drugs will be additional. (I will be declining the chemo - my choice)
Will add more as and when dates are known (and when more time to hand)

6 days since the op. Sleeping a lot on and off during days (I think the painkillers might be making me drowsy)
Went to GP on Friday to have dressing changed. The nurse who changed it said that the doc that put that dressing on was a "brainless idiot" and actually notes those words on the computer in the notes to my file.
Have to go back there tomorrow to have dressing changed again. Will be a different nurse on duty tomorrow. Possibly (will see how I feel) may go into work on Wednesday... but may not. Will be off work for probably about 6 weeks to 2 months during the RT treatment. Don't know yet if they will pay my full salary for that period or whether it will just be statutory Six Pay. Knowing them, will probably be the latter.
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Re: Here we go again

Post by Feather on Sat 06 May 2017, 21:27

Hi,Candlelight. I was wondering if you think writing it all down helps you.
Is Jimmy still with you?


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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 21:33

27 Jul 2009

Yes, I find it helps a lot. It's also good (for me) to keep a written record - a diary of dates, emotions, appointments, events, etc) - moreso this time as no-one at home to discuss everyday matters with.

I started a diary the first time round, found it very therapeutic apart from the other benefits (there were no forums around at that time, at least not that I knew of ) , but unfortunately I didn't keep up with it (the diary) - although I do have a comprehensive medical record file of my own (I learned quite early on that's a wise thing to do - and not to trust the medics for their records alone - far too many mistakes/apathy/ignorance). Cross-reference is peace of mind if nothing else.

Yes, Jimmy is still here. He's got a temporary teaching job for 4 weeks while he interviews for full-time jobs, so happily for me he may be around for the start (if not all) of the treatment. 😁
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Re: Here we go again

Post by Feather on Sat 06 May 2017, 21:44

That's good to know. It's not nice feeling that you're on your own --of course you're not really cos we're here but you know what I mean.
We're so far away in one sense but not in mind.xxxx.


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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 21:49

01 Aug 2009


Went into work Thursday and Friday. (In fact, missed going in - in a funny sort of way, maybe the company and the laugh...)
Bit knackered and sore by the end of the day but then slept really well through the night.
Anyway - I'm determined (as before) that I'm not going to let this thing rule my life. I have control of IT, not IT of me - and it's simply got to fit in around my life, NOT the other way round.

Positive thinking always. Smile

Still haven't got date for appointment (Tuesday will be 2 weeks since the op). Maybe something will come in the next couple of days. I'll be glad to have that bit over and hopefully they will let me know when the treatment will be starting and I can make proper definite arrangements.
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Re: Here we go again

Post by Feather on Sat 06 May 2017, 21:55

Too true. Stay positive. What's your next app for?


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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 21:57

01 Aug 2009

Will be with the surgeon/consultant team (supposed to be 2 weeks after the op - they said I will get a letter to say when will be) to discuss how the op went, what exactly they did, how it has healed, and what happens next, i.e. treatment etc.
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Re: Here we go again

Post by Candlelight.kk on Sat 06 May 2017, 21:59

04 Aug 2009


Well - just returned from my hosp appointment - where they tell me I have to have another op - tomorrow(!) because apparently they didn't get it all ... some found to be travelling up a duct or something ha ha ... if they'd known me well enough they could've guessed that I'm not one to stay on the main road, I always like to go exploring around the little highways and biways.

Not such a big op this time they tell me ... as they don't need the "marker" this time and they will just use the same scar.
Cheers guys ... I've made your job easier for you this time round.

Then my after-appointment will be exactly 2 weeks from today (they've assured me ... whether there's a letter or not!)

And of course means the treatment is delayed further now. It was always my biggest concern that the treatment period is not going to affect my going to MUNCASTER!! Of course the Spain thing is out of the question - I realised that from the start.. after radiotherapy treatment you are supposed to avoid exposing the treated area (which includes all down your arm as well) to the sun, so I knew I would have to cancel that ... BUT I will be utterly inconsolable if it turns out that the treatment period clashes with the Muncaster weekend.... Shall just have to wait and see.

Meantime ... it's fasting again for me from midnight tonight - have to go into the hospital 7.30 in the morning.
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Stardust
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Re: Here we go again

Post by Stardust on Sat 06 May 2017, 22:03

Hello Candlelight.

My thoughts are with you. I hope your treatment is having a positive effect.
I will keep lighting my candles and, although I'm not one to pray as such,
I will send out fervent wishes into the firmament, outer space, ........
wherever the healing angels have set down their camps.



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A gentle whisper like the breeze sighing, so easy to miss, listen carefully...
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Candlelight.kk
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Re: Here we go again

Post by Candlelight.kk on Sat 06 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.

    Current date/time is Sun 19 Nov 2017, 16:07