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And the more I learn

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And the more I learn

While tappng away on various forum topics I've been having my own private nightmare this week.

Last week I got what I thought was a 'good' CT scan with no spread to my lungs and liver, but substantial increase in tumour number and size in my neck and chest wall, and possibly a few nodes in my pelvis (you know those might be nothing ha ha pin pricks that werenn't there last time.)

I had for a couple of weeks been getting quite severe nerve pain in my shoulder for which tramadol which made me nauseous, for which siwtch to oromorph and anti sick meds. Meanwhile I notice my left eye (bad side) looking 'funny' droopy and a bit bloodshot. Then on Monday, at a BC event of all places I open my big mouth to speak and out comes a squeak. Spent Monday coughing and apologising and thinking oh it cant be lung mets cause I only had CT last week. By Tuesday the voice is worse and I've uncoverd Horners sydrome from information fron dawnhc(the eye), and Pancoasts syndrome from someone else (explains the hoarse voice, and the pain and the eye). GP today who has to look all the syndromes up, is very nice...dishes out various drugs...more painkillers, anti depressants, sleepers, anti sick...first time I've had one of those big packets of dtrugs for very ill and very old people. GP consults onc but looks like it will just be go ahead with taxol as planned next week.

I have been really upset all week...and scared about what next? I have one of those big booming voices that likes to hear itself and I am now reduced to the strained squeak of a little frighened girl...phone calls a nightmare and asking for a cappucino in a cafe is hard work...daren't ask if it could be permanent...roll on taxol...this is the first time I've said roll on to the chemo...the first time of real cancer symptoms, of a feelng that my body is beginning to let me down all over the place, of cancer taking charge.

And why did I not know about this as a possibility.?..yes its rare...but rare is extra scary.

So would love to hear from anyone who knows anything about Horners syndrome or Pancoasts syndrome.

S*** disease.

Jane

55 REPLIES 55
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Living with this disease seems to involve having two different mindsets - for me at least, I know I am going to die of this disease and even when things are going well (as they are at present} I don't entertain any false hopes of more than a few years. However that isn't the same as being positive - and I don't, by that, mean the general illusion that 'being positive' can somehow improve your prognosis. I just mean, like Anne, getting the most I can from every day. Yes there are really black days, there are nights when I lie awake all night with my mind racing - but for the most part I do enjoy my life and intend to do so for as long as possible. I agree Jane - if the only control we have is how we live with this cr***y disease then that will have to do.
Best wishes to all - Jane I hope they can do something for your voice but I can say, never having met you before, that you certainly still come across a someone full of energy and ideas - even with a little voice.
Barbara

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Hi Anne

I rarely get offended...but I am pedantic and opinionated and it gets me into trouble over all kinds of things including cancer! I say: 'Well I've seen the bus and it isn't stopping....'

I suppose I don't think about being in a competition or a fight with bc..so there's no winning or losing. It's simply a disease which for all kinds of reasons gets spoken of (in my view) metaphorically in rather peculiar ways. I don't juice or do a positive attitude (I do realistic hope) either and don't think I have any significant control over when it gets me...I do have control over how I think and talk about cancer and a bit of say in how I live with it...and that's enough control for me.

best wishes

Jane

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PS Ok, had a few mins thinking about it and yes, at times, I am gripped by fear and I cry buckets- I think it's natural. But then, thankfully, it passes and I forget it for a while...

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Hi Jane,

I often feel as if I am on another planet because I've had a strange history so sometimes, the things I say are a bit weird!

I was insensitive with the comment from my counsellor- I hope I didn't offend anyone. He deals with crises and I've only seen him on the occasions when I've really felt lost and confused- so not a regular. We had a chat about life and death and I too am very philosophical and pragmatic about it all and so, his comment was made to me, knowing my situation and attitude. I have been through the phase when I had to write my will quickly and being single, get someone to act as my attorney to handle my estate and been told numerous times that this will kill me. I can talk to professionals about disability and death, but feel protective of other people who have no training in dealing with it. I suppose I'm just glad that I've been able to delay it. I will think about it more when I need to but for now, warts and all, I just want to enjoy my life and I want to see others enjoying their lives too.

My feelings may also be obscured by the fact that I was put on anti-depressants straight away! I wasn't any more depressed than anyone else in the same situation would be but I took them anyway as I wanted to give it the best shot I could- along with plenty of positive attitude, juicing like a mad woman and anything else I could do to improve my odds, however slightly.

I share all the sentiments on here that BC is a very s******, sneaky, B****** (!!!) to have in my life but if it stops me enjoying life, then it has won.

I really hope your voice comes back too!

Anne x

Btw, my way of dealing with the bus comment, is to try and say it just before the other person is about to! Somehow, I can cope with it then. Also, I have a friend who honestly believes that I am far too stubborn and determined to let this get me! I'm not sure whether to see that as a compliment or not!

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Anne

Thanks for your thoughts Personally I would walk out on a counsellor who told me life was terminal. (fortunately I have a
brilliant counsellor who doesn't make judgments.) Sounds too like the 'anyone could fall under a bus syndrome'.

I find that for me having no illusions about the fact that breast cancer is going to kill me is the only way to live with it. I'm no more miserable nor depressed than the next person..and not paralysed with fear...though no problems in saying I'm very scared. I simply have a different take on living with breast cancer than many others seem to and that includes wanting to bash down the taboos about talking about dying and death. I know that for triple negative recurrent disease my own cancer is behaving more indolently and less aggressively than it usually does and for that I am very thankful. I know the limtations of the chemotherapies I have left, know I could be dead quick, but probably will be slower, like each of us just hoping for as long well time as I can get..and hoping I might get some of that with an audible voice too..but if not well I'll live with it.

We're all different..and I too live as busy and full a life as I can though goodness knows why I feel the need to say so!

Claire: thanks for your message....I really must get a better attitude!

very best wishes

Jane

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Hi
Quick message from me, sticking my oar in but hopefully, giving a different view, and a tip or two.

First, bit of history. I had droopy eyelid and double vision- one of the first signs that I had something v wrong with me. In my case turned out not to be a syndrome but a met above my left eye. Was also very anaemic, had mets lining tum, wrapped around bowel etc, full of it. Needless to say, a few bones thrown in for good measure. At 45, yes, I was a bit on the young side but there are plenty on here, unfortunately, who are much younger.

Initially, they didn't know it was BC and I had an absolutely terrible prognosis- this is the situation for people diagnosed initially with cancer of unknown primary (CUP). I was on anti-sickness tablets, iron (then transfusion) and laxatives. I couldn't eat much and what I ate came straight back, even my anti-sickness tablets! I had my DLA approved straight off and a hospice referral. From this, I learnt a bit about laxatives! Senokot is a bit harsh, dulcocet helps a bit (same for lactulose). Best I found was the laxative dose of Milk of Magnesia, as recommended by my palliative care doctor- works a treat and is gentle.

Anyway, this is going to sound sick but I am grateful that mine turned out to be a treatable BC (hormonal therapy worked- one year on, but may have some progression now). I live a normal, full (and mostly happy) life, something I could never have imagined a year ago. I know, for triple negs, it is much much harder but hopefully, tested BC-chemo regimes have been established that hopefully go some way to control the disease.

It's been a strange year all in all, not least helping two friends who were also diagnosed and are having treatment for local disease- I admit, the treatment seems very traumatic and I admire their resilience.

As I was reminded by one counsellor, life is terminal! So, with his help, I came to the conclusion that I'd better get on with it! Now, I have very little time to allow myself to be paralysed by worry or fear.

Best wishes to you all fellow troopers!
Anne

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Jane you'd just love my mum, this morning she gave me an article from a magazine about how some young woman with bc is coping so marvelously and the last sentence says "In a weird way I feel almost lucky to have had it".........I wanted to fling it straight in the bin!

People have got no idea have they and quite honestly when they read article after article putting an upbeat, 'oh it's not that bad', spin on it how are they ever going to learn that actually it's a nasty, unpredictable, sneaky disease! This morning on the radio one of the presenters commented that Wendy Richards now has bone cancer......well no it's secondary breast cancer in the bones.....big difference!

I read recently, I think it was on one of these forums, someones surgeon telling her she was lucky as it was a very treatable disease.......hmmm, I suppose we should all be feeling lucky then.

Sorry for that rant Jane........I hope there's something that can be done to help your voice and that the weekly taxol reduces the tumours.

Take care.
Claire x

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Thanks Jacquie

I am waiting for appointment with ENT specialist and will be asking then about speech therapy....apparently even if the taxol reduces the tumours the damage to the vocal chords has been done and is probably not reversible. Every morning I wake up and hope it will be magically better but it isn't...though some days better than others. The worse situations are in restaurants..or anywhere with background noise...but I can still enjoy myself as you know! I've got more confident now in one to one stranger situations and on the phone. I think the worse thing is that its so obvious and that means some people think the cancer is more advanced than it actually is...a friend of mine is going to USA for 6 weeks shortly and confided in another friend that she was worried she'd never see me again...blimey....I wasn't thinking of big D. quite yet..and its the voice thats done it.

My hair has nearly all gone now so I do kind of feel like a visible cancer patient.

Some of my lumps and swellings are smaller and softer...

Jane

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Hi Jane,
Sorry to hear your voice is still not behaving itself - I really thought once the taxol got going it would get sorted out. What a bu**er (insert m's or g's as you like!). You must be soooo frustrated. Have you thought of seeing a speech therapist? I know you were talking to Kay about it. I just don't know enough about 'voice production' to have any idea what might help.
Anyway, suffice to say I'm thinking of you and care about your predicament
love Jacquie xxx

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Hi Jane,

I've just been reading through your thread. I am SO sorry you are suffering with these new symptoms. I do hope the taxol gives even better results than anticipated by your Onc.
Glad to hear the pain is reducing.

Please keep posting on here so we know how you are.Many of us are grateful to you for the info you give us on here,which helps us to understand what may be going on when our minds are in a panic.

Thinking of you,best wishes for the rest of the week.

Ann G X

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This damn disease is deliberatingly cruel isn't it? Find your weakest (or rather, strongest) point, and hit you there... How does it know???

Jenny
x

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Saw my oncologist last night (she's about to retire so has seen a few cases) who told me that I'm the first breast cancer pateint she's ever had personally had (so to speak) with these syndromes...wow great to feel so special

My voice is still high pitched and squeaky and most definitely 'not me'. Three weeks ago I avoided the phone and apologised in public: 'sorry I've lost my voice'...now I initiate phone calls (and bear the pause as friends struggle to recognise me) and have stopped apologising.

Onc has referred me to ENT consultant but warns damage may be permanent...so the teflon injection could be a long shot.

'My voice was my life'....I was a teacher, my part-time job since retirement has been answering calls on an education helpline... I was the one who spoke up in big meetings, I was the one whose shouting could be heard up the road, I was the one who couldn't whisper...this hurts bad (no not physically) but I'm learning.

Find me the breast cancer book or the leaflet or the helpline which knows about this one...

Jane

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Hi Jane

Definitely a private medical bonus - but my onc only rings with bad news, so i have to steady myself when he rings,,,my guess is there are specialists within the london clinic who would look at this - but I am sure your onc has someone in mind as they operate in a network....

take care
cathy

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My onc just rang (private med insurance bonus?) and spoke to my partner. (For me trying to talk on the phone is a particular nigthmare.) She says chemo won't necessarily improve my voice..it depends on nature of nerve damage. She said there is a possible injection into voice box if this is the case. Must say that thought of voice problem permanently is pretty hellish but then the whole thing is hellish and guess you can't actually die of a ''lost voice.'

Jane

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I would still try to get a supply of movicol - it dissolves in water and doesn't taste too badand just gets everything moving gently. Usually adult dose is 2 senacot I thought.
Glad your voice came back for a while. I ate some lasagne without being pureed and now eating a raw apple and cheese and biscuits so really pleased. Breathing still not good - the carer thought it was bad today and like you high on steroids. Will crash on sunday when stop then.
With vineralbine I found it was a gradual build up of doses that I noticed my breathing improving over a few weeks so hopefully you will find the same and you can cut the painkillers back and get talking. I still take oromorph especially at night when my back is playing up.
Love Kate

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Senokot (2) worked!

Thank you. And thanks for the morphine warning...I rather like it though am reducing dose as pain much better.

Jane

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Dear Jane,

Just visiting here to see how you are! I am so sorry to hear about all of the difficulties you have been having. It must be very difficult to deal with the world if you can't always speak. Can you get any help with this? I met a lady at the cancer hospital who couldn't speak permanently because she had had a brain tumour and she was getting help, so I would think that someone at Marsden must have ideas.

As for constipation, movicol was the only thing that worked for me when I was on FEC.

Best wishes,

Christine

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Jane I found the morphine a nightmare with side effects. But for the constipation I did find one senokot at night usually did the trick. My system doesn't need much persuasion. But i did have to make sure I took it each night regardless. If that wasnt enough I had movicol half to take during the day time. Do be careful on morphine that you don't make the mistake I made and go cold turkey. No one warned me!!! Do it slowly if you want to come off it.

Good to hear a brief return of the voice - a sure sign the taxol was doing something.

dawn

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This is a horribly practical post. Perhaps I ought to be making a more profound contritbution. I'm sure I ought to be making a more profound contribution. But BUT to JaneRA's complaint and request for suggestions : I have found that dulcolax tablets do the trick. Two before bed, and I'm .... er normal. Three before bed, and I need to know that there's nobody in the nearest loo first thing in the morning when I wake up. Wake. Dressing gown. Walk. Wham ....

M

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My voice came back for an hour this morning but has gone again. Very high on steroids all day...boundless energy and didn't even mind queaking in a cafe and M and S today. Just constipated now from morphine and anti sick meds. Suggestions other than senokot which seems too gentle??

Thanks for portocath advice.

Jane

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Hi Jane - just checking to see how you are? I guess with weekly taxol the benefits may take a couple of doses to kick in but hope it happens soon so you can get talking again.

Geraldine

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Hi Jane

Haven't got any words of wisdom or anything like that but just wanted you to know that I'm thinking of you. I've had trouble signing in this last week which has just now been sorted but wanted to reply to you along with everyone else here.

It is scary when it moves into another stage because it's going back into the unknown again.

Hope, if you do have a portacath, that it goes smoothly. I've got one (had it for 4 years) and am so glad that I've got it.

Take care.

C
x

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Hi Jane,

I have a portacath and I am soooooo glad I have. I never notice I have one, but when time for chemo comes it's such a relief to know they don't have to hunt for a vein. Just a little pressure on portacath and they can do everything, from taking blood to give chemo. It doesn't hurt at all. Once you have one you'll wonder why you didn't get one earlier, I am happy my doc decided to put one in during mastectomy.

love Maroke

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Hi Jane,
just checking how you got on.
Glad to hear it went ok and you're home. My experience of a portacath has been all positive, tho i hadn't had the painful neck experience you have - I can understand why you're nervous.
Just keep on 'talking' on here - we love to listen to you.
love & hugs
Jacquie x

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Glad the taxol went OK.

I had my Hickman line put in under general anaesthetic, (hospital were trying to cut down risk of infection). It never hurt at all. It does seem like a big deal at the time, but the benefits definitely make it well worthwhile.

Jenny

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Taxol in and done. Hunt the vien for an hour so talked to doctor about port. I'm phobic about having one put in because I got such terrible pain from biopsy of neck lump last eyar. But the time may have come..and doctor did lots of reasurance about intranous sedatives.

Steroid high right now. I need my voice but thank goodness for the internet...my voice can be heard here. I think without it, if this had happened before the www it would be so much worse.

I can kind of squeak and croak...and last night it seemed better for a few minutes.

Thanks to everyone

Jane

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Just to wish you well with the Taxol Jane. It's today isn't it?
I'm sorry you're having such a traumatic time - you're one of my favourite people on this site, certainly one of the best communicators. You of all people need your voice.
I had Taxol last year. In retrospect, although the side effects were intense they weren't as draining as everything else I was given. I hope it's the same for you.
Thinking of you,
Julie

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Hi Jane

Had my first of weekly taxol and it went Ok - i can definitely agree that dex and piriton made me go to sleep, dozed off for half an hour,,,,

hope this gives you your voice straight back,

cathy

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Jane - hope it goes OK tomorrow with taxol. They give dex and piriton so usually end up going to sleep fpr a while. Def not a chemo I can drive home from. Hope your voice improves. My lump shrunk from 4cm to 2.5 in a week so hoping it's done the same in liver and will do the same for you.
Katex

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Hi Jane
just to say good luck for tomorrow, hope you are feeling better and your voice has improved.

Love Debsxxx

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Hi Jane,

How cruel for cancer to cause a problem with your voice..... I can image how scary and totally frustrating that must be, as words both written and spoken are a really strong and important part of your life. I really thought you had got a bit more of a reprieve after the last CT scan, but then cancer can alway throw a curved ball. Lets hope that this week's taxol goes without to many problems and make a real improvement in both the pain and the voice.

I was looking at the net to see if I could find something useful and found a program that will repeat any written words (these words can be pre-typed and just highlighted to voice from the speaker).

I haven't tried it or looked in any great detail but it can be downloaded from some reputable download sites. The one I found was called '1st Read It Aloud'.

Hope you don't have a need for it and really, really hope the taxol kicks the bl..dy tumours to touch. About time something lasted for a while and gives you a good result.

Love Roberta

PS. I'm another who has a large bag from the chemists, but I don't feel either old or very ill .

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Hi Jane,
Just wanted to add my thoughts and good wishes at this cr**py time you're having. Hope the chemo makes a real difference and quickly. I'm sure you can find ways to be naughty with v little voice!
love Jacquie

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Dear Jane

I am very sorry I offended you and I didn't mean to do so. I should know better as I was diagnosed with a rare tumour and it isn't great to have something that hardly anyone knows about.

Mole

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Hi Jane

I thought We were the naughty table - just shows that there is always someone naughtier than yourself!!!

Table 2 had a facilitator who did well to keep us nearly in line but at times she did gives a few withering looks as if to say "I can't wait until your Mums come and collect you and take you home!".

Anyway, just wanted to wish you better things. I recently read The Anatomy of Courage so don't bother, it was bu**er all help in the sh*t scared stakes. Thank you for bringing "Five Lessons ..." to our attention, it was right up my country lane.

If there's anything I can do, fetch or carry then please say, I'm only just over an hour away - nowt.

Better things ...
D

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Hi Rachel

Thanks so much. It was a good day in July wasn't it? Missed you last week...hope your're doing OK.

Jane

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Jane,

I am sorry to hear of your troubles. I am another member of the naughty table who missed last week’s BCC meeting. I was inspired by making connections with yourself and the others when we met up, I do hope things improve for you.

Rachel

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Hi Jane - sorry to hear your news and the fact you have had such a s****y week. Given the syle and tone of your posts I can imgaine being disabled by a wonky voice would really p**s you off.

Don't know if this helps but I knew my cancer was back due to a persistent cough and the fact I literally lost my voice in a day or so. Chemo has got it back for me; although it isn't as as strong as it once was - I cannot talk loudly or shout anymore. When I'm tired it gets a bit croaky and husky and weaker, and its definitely more high pitched than before.

Given you are about to start Taxol hopefully this will help.

Geraldine

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Hi Lily

Thanks for your concern. Have already done the internet and know that page!

Basically it seems that pancoasts's sydrome is usually associated with a particular kind of lung cancer but can also (rarely) be caused ny breast cancer.

I am starting taxol on Weds...the aim is to try to shrink my neck tumours and thus hopefully relieve the damge to the nerves.. which is causing all my symptoms....pain, droopy eye, hoarse voice. I have already had a chemotherpay in the platinum group and it didn't work very well (carboplatin.)

As for the stats...well the pancoasts' stats are much better than my breast cancer stats! These days its not only the fact I'm going to die of cancer that bothers me but exactly how and when.

Jane

Jane

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Jane,
saw your post and was very sorry to hear that despite your great ability to take on board new set backs, life sent you such a c..p one, which has affected you both mentally and physically. Losing your voice is such a tough tough thing, as it is so much a part of who you are and I think would leave me feeling quite vulnerable, in similar circumstances.
I think I have gathered from your posts that you like information and fact, I do hope I have gauged that correctly.
If you feel up to it, look at the 'www.patient.co.uk ' site which gives information and photos on Horners syndrome and can link you to another on Pancoasts syndrome. It is quite medical but there are a few stats in case you don't want to head that way just yet. I think the site was quite good and balanced as it is for patients rather than doctors. By the way they use a cisplatin based chemotherapy for it, so you might feel it worth mentioning before you start the chemo. I don't know whether taxol is in that group. There is a lot on the internet if you search, including a trial that had gone well but it seems to come from other cancers and conditions too so you do have to read quite a bit to sort ot things that are relevant to BC.
Wishing you much luck with your new chemo and minimal side effects
Lily

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Hi Jane, I am sorry to hear you are feeling bad and so scared. There is nothing worse than the 'does she take sugar syndrome'? in shops and public places - being treated as though you are stupid not unwell.

Rachael

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And Kate

Thanks as ever...yes am contacting the hospice team on Monday...there's a challenge...making myself understood on the phone!

I'm putting up with the pain at the moment cause I can't bear the nausea and the pain is manageable.

Thought of you as I ate carrot cake in John Lewis today. Mind you not the best place to be on a busy Saturday...

Jane x

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Mole:

I don't really care what they call it. I haven't got a cold or a gammy throat and neither have I got a voice that works properly, I've got growing cancerous tunours pressing on nerves and I'm s*** scared that I might never talk properly again. I'm entering the world of disability where people address remarks to my partner in shops because they can't hear what I'm striuggling to say , and strangers in the street look annoyed beacuse I can't give them directions.

So this time the joke not appreciated!

Jane

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Jane - you're just as bad as me as getting unusual symptoms from your cancer. It's horrible being unusual. Really feel for you with your voice - having enjoyed lots of chats with you so can't imagine you with a 'little girl's' voice at all. Sometimes when my lung mets have been growing, my voice gets very husky but the chemo clears it up so I've got my normal voice back but it'ds so frustrating.
I've always had a slight droop to one of my eyes which gets worse when I'm tired so get sick and tired of seeing these crappy photos of me with a droopy eye.
Can understand you're scared right now - so am I. I've gone into burying head into activities like card making and writing letters so that I feel I'm not wasting time and just hope people appreciate the fact that I've made them thank you cards.
Hope they give you the right dose of taxol next week - diarrhoea was a problem with the high dose but not too bad now on proper dose. Do get tired but my sleeping pattern is all over the place and I seem to sleep in the afternoon and then am up in the middle of the night. Must try to get that sorted.
Have you sorted out the pain and nausea now. Do get in contact with the hopsice people if stuggling- I've found them the best by far for symptom control.
I'm sorry you're in such a bad place - so many of us are at the moment = not that it makes it any easier to bear.
Am busy this week but free mon, wed and fri the week after if you'll up to it. We can sit and have a good moan together then.
If we all stick together, we can get through this. I know you hate the 'ill' part but you wouldn't be human if you didn't feel like that.
Know nothing about these syndromes but know you are making the right decision to start taxol now and hoping it will help with the pain etc. Am around now the kids are back at school so hopefully see you soon. Am happy to come to you if easier and we can console each other.
all the best for next week
Love Kate

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I wonder if the psychological impact is worse if you call something Horner's syndrome or Pancoasts syndrome rather than a gammy throat or feeling like crap

I felt better when I discovered an oncologist was a lumpologist, don't know why

Mole

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Hi Jane

To hear that someone who is such a star on these sites is suffering such a terrible week makes me sad, but I hope that hugs help until you get the Taxol, which I hope will give good results to you.

Kinden
x

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Hi Jane

Sorry to hear like the others you have had a bad week, sorry can't help with syndromes but sending lots of support.

Cyber hugs Beli x

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Hi Jane,
sorry you have had a s..t week it comes to something when we actually look forward to starting chemo! I know what you mean though we put up with so bl..dy much I am sat at home bones not moving, legs for some reason will not go where brain is telling them.
Wishing you all the best with taxol next week.
Re pm I sincerely meant it when you and your partner are up to it.

Love Debsxxx

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Oh bloody hell Jane,

I am sorry you have had a bad week with this...I am getting into the same sort of mood- roll on chemo, its got to be done. I haven't really experienced anything like you say above - because although I have quite extensive mets the symptoms are not really significant - just hints of what it will be like when it gets worse. I don't know anything about pancoasts or homers syndrome although i do remember flipping through that when I first noticed enlarged nodes in my neck.....suspect your voice will come back once taxol kicks i, maybe you have a cold on top of everything?

take care- hope 1st taxol gos ok

Cathy

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Here's to the naughty table. We were the picture of decorum this time, and missed you, Lynn.

Jenny
x

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Lynn We weren't quite as naughty without you!

Jane