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Bone mets - please join in

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Re: Bone mets - please join in

Hi girls! Sorry I haven't been much in. Tried catching up with some posts before I wrote this but my memory's gone! Guess it being 6:30 and having beenup at 3 doesn't help!

anyway, it's been another rollercoaster week 😞. First came the appointment for radiotherapist through over last weekend. Had to travel 1:30hs for the appointment, then find out the clinic was running 1h behind and then told to wait for CT to measure up... ende up coming home 6hs later!!! Then the day I was starting radiotherapy they were running behind, hadn't received my paperwork AND had to take an antisicknwss tablet which meant waiting another 30' !!! Thankfully both days the girsl were having fun with grandparents and cousin otherwise it would have been a nightmare!

On top of that I 've been sick for a week (before the radiotherapy) and now have constant feeling in my legs that they are going to cramp. Painful! 😧

To top ot up got a call form the onc saying that he wanted to see me... (always dread the last minute appointmnets!) Saw him friday after radiotherapy to tell me that the blitters have taken residence in my liver, haven't been accepted on the trial yet (they want me to have the next ct and the removal of ovaries that JT had) and to do an emergency ct scan of hte brain due to the vomiting....

aaaaaarrrrgggghhhhh - sorry for the massive rant, I know you understand! (And dont get me going on the waiting times!!!)

 

JT someon said about having an ice oack unde rthe pillow to be able to hold in the night for the night sweats and that it helped... 🤔

hope everyone has had a nice weekend

big higs xxxx

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I have a breast care nurse but I haven’t seen her since shortly after I was diagnosed. She’s based in the breast care unit miles from oncology so that’s not surprising. The care and support in the breast care unit was mostly excellent and I was seen there initially after secondary diagnosis. My BCN told me to ring her about anything but the last time I tried, her attitude was ‘Why are you ringing me about this?’ So I won’t be contacting her again. Mind you, have any of the other cancer patients I see at outpatients got that kind of specialist nurse?

 

I was told not to have anything invasive or even to have my blood pressure taken on the arm on the side of my lumpectomy and they gave me a card to carry which said that (now buried amongst all the other card shaped junk in my purse).

 

I take exemestane and I don’t eat grapefruit but apparently it affects all sorts of drugs. I don’t eat Seville orange marmalade either (I found a reference to it on a website) which is a pity because I love it and had just made a large batch when I found out.

 

Jellytot I can sympathise with your lack of sleep but I don’t have any magic answers. I’m afraid I take a pill from time to time.

 

Helen and Janette, glad to hear you're both stable!

 

Hugs to all Bon xx

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Stillhere, I read on line one time about grapefruit. There is something in it that can increase to potency of the drug. It also listed star fruit and pomegranate along with grapefruit and Seville oranges. Never was told marmalade. FF

 

PS Just went and had a read. Seville Oranges are used in marmalade. 

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Hi Jellytot, I dip into the forum occasionally and was sorry to read about your horrid side effects, glad that they are getting better. I think I had pretty much the same ones as you when I started the PIPA trial, I'm probably repeating myself (brain dead these days!) but I almost gave up in the early days.

 

 Palbociclib and Ribociclib are almost the same drug I believe, just made by different companies so hang in there, I'm sure it will get much easier! I'm not allowed to eat grapefruit or its juice, Seville oranges or marmalade, have you been told the same? As you said, every tablet/supplement has to be approved on a trial in case it skews the results.I think I've already posted somewhere, my latest CT scan shows a 50% decrease after 15 months so it's still working well. I hope you get longer, best wishes x

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Hi Jellytot,

i believe sage tablets may help as my friend swears by them ,but take some time to realise they are working for some people ,she buys hers from amazon as much cheaper i am led to believe so good advice from maria louise and worth a try .

take care .

renee

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Jelly Tot I was recommended sage tablets by the hospital to try and help with the sweats.  I got them from Holland and Barret . I only actually ever took 2 or 3 as I kept forgetting and was taking so many anti sickness tablets at the time i just couldn't face another pill.  I may start taking them again though.  If you cook with sage you could always try the cheaper option and chew on a sage leaf. Xx

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I'm pleased to report my nausea is much less now, my stomach issues aren't as bad and the headaches have gone. However insomnia is still plaguing me. I've called my trial team but I have to wait to hear back as to whether I can take anything because everything has to be approved by Novartis. I've tried relaxing as much as possible before I go to sleep. I can't do hot drinks or baths as they make me feel hot and flushy. Any tips for reducing night sweats at all as these aren't helping with the insomnia!

Hope everyone is doing well xxx

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I suppose thinking about it it does make sense using the arm that hasn't been compromised, I will remember to say something next month.

 

The double whammy was devastating but then so is any secondary diagnosis.

 

Every women that posts on here just amazes me,  this is a good place to unload and have a moan and we all deserve to be able to do that.

 

Now going to have breakfast, I do love the late starts in the school holidays.

 

xx

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Hello Maria
There are a few hormone options so you hopefully have them as an option at a later time. We moan about side effects but really it's minimal compared to some treatment ..and if we didn't moan ...then we would have nothing to.post here .....
My oncologist says firmly that my arm with the lymph node removal must not be used even after 13 years ...only once did a locum nurse use it.
Reading on other threads though ..a lot of oncologists relax that you can use that arm for taking out blood but not putting in anything ..it's very much different from hospital to hospital but it's to do with infection and lymphadema ...
I'm so sorry you got the double whammy of primary and secondary. .must have been tough news to take in at the time ...
Hugs xxxx
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Morning ladies.  

 

Carolyn, thank you for your reply re hormone treatments, I wasn't sure how many other options there were on this type of treatment.  I haven't had a period since April last year so I am assuming that I have been going through the menopause during that time.  See that was one of my questions for my onc that I didn't ask in my haste to get out of the hospital.

 

Yesterday I had my Zometa treatment and the nurse who set it up asked me which side I had my nodes removed from as they don't like to use that side for treatment.  I had never been told that before.  Has anyone else heard of this?  

 

Janette I bet you feel better this morning, I am so pleased that your scan matched your good Tm results.  

 

Helen good news with your treatment working too.

 

Jelly tot tot how are you feeling this morning ?  being unable to sleep can magnify everything.  Do you have a good book you can pick up in the lonely hours, maybe a little read could send you off to sleep?  

 

Nicky I watched the athletics Wednesday night and felt so sorry for those athletes getting soaked.  I hope you enjoyed your day though, I do wish we had gotten tickets but I am not so good at planning ahead !! It's all last minute with me.

 

it sounds like it depends where your hospital is as to whether or not you get a bcn to support you after secondary diagnosis.  I think I noticed it more as I was diagnosed straight out with primary and secondary So never really had much to do with them at all.  

 

Wishing you all a sunny day today xx

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Hi Nicky, lovely to hear from you. Really hope you are doing well. Sorry you had rubbish weather on....thats typical British weather for you isn't it, you can't plan anything in this country!
I was actually thinking the same thing about Femara, I am lucky enough to have a great set of GPs at my surgery and they had no reservations about prescribing me the branded, if I'm being honest I really do feel that all this itching is down to the fact I have been thrown into menopause and it's symptoms from that because I googled menopause symptoms and I appear to have most 😀 haha lucky me!! The itching and dry skin, low mood, tiredness and irritable. My bcn has referred me to the clinical physiologist at The Christie who are meant to be amazing at teaching coping mechanisms etc.
Take care hugs Janette xxx
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Yay, plenty of stable Mabels! Great news Janette and of course Helen, who I knew about before. Enjoy your holiday Jools, hope to catch up in September -  maybe when the sun has returned from its holidays 😉

Talking of the lack of sun, guess which night we had tickets for the Athletics World Championships? Yep, Wednesday, the only one it rained on. Typical, you order these tickets about a year in advance, find out that you have actually got the ones you requested and then on the night in question it pours down ️ Never mind, all the spectators are under cover, which we found out when we got there, just felt sorry for the athletes getting soaking wet.

Janette, check out brands of letrozole but if you are lucky enough to be getting the branded, and therefore fully tested and trialled, version (Femara) it will be the one that is least likely to affect you. Some of the others have definitely affected me in the past and agree with Carolyn to avoid Cipra. Also, as with Helen, I have been on Denosumab for 4 years or so and not had any symptoms of itching (plus there's no news of coming off it after 3 or more years in our healthcare trust) but I know we can all be different. Isn't it great, the mixed bag of side effects? Which one will you get? However they are things we do have to put up with when we know how well the actual drug is working for us.

Hi to all our mets ladies, here and across the pond.

Nicky x

Ps, edited to say to Jellytot, how awful to have really severe side effects from the trial you're on. I know you will be closely monitored so maybe they can reduce doses somewhere in the combination as they do aim to get a balance between effectiveness and how you cope with the side effects.

Alos, regarding BCN for secondary BC for many years I haven't had one at all but for the past couple of years I do have one. I think it's up to each Trust to determine who they train up to cover secondaries as most are trained for primary BC which, as we know, is a different level of support and information. At first I was always worried when my BCN sat in on my oncologist appointment just in case she was there to hold my hand because of bad news. Now however we all have a chat about holidays etc, my oncologist included! She is definitely part of the team and doesn't just sit there taking notes she get involved with my appointments.

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You go Renee!!

 

Jeanette!! Yahoo!!! Wonderful !! Toot! Toot!!

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Janette - fab news Stable Mabel! I would definitely think about changing the brand of letrozole & see if the at is causing the itching. I've been on denosumab for nearly 5 years and never had itching but then we are all different.

Julia - thanks for popping in & enjoy your holiday, hope to see you again in September.

Jellytot - really sorry to hear you have so many side effects on your trial drug, hang in there girl Heart

 

Good luck to everyone on their treatments and thanks for your good wishes from another Stable Mabel

Helen x

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Yes Carolyn my onc did mention that as a possibility too? ????? 

Janette xxxxxxx 

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Jeanette
I think u maybe blaming letrozole but looking at side effects of DENOSUMAB ..it's says itchy and dry skin as a possible problem ..you have been having it for a long time now ..could it be that? Our hospital stops it after 3 years ...
Hugs xxxx
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Hello Jeanette
Ha ha ..I've got the itchy bits too ..sometimes my bum cheeks and back of my legs !! Im ok until i start itching and then it goes on ! If u try a different brand ..avoid cipra .I can't get on with that one ..I like accord brand but Sandoz is another ok one and Dr reddy is fine too.
I find tea tree oil stuff good. .creams shower gels and shampoos all help.
But ..it's doing its job so we mustn't complain.
Hugs xxx
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Yes Carolyn we did discuss my itchy scalp and she suggested maybe trying a different brand of letrozole, I currently take the branded Femara, she doesn't think it's down to the letrozole itself but could be one of the bulking agents in it??? So any ideas ladies on preferred brands would be appreciated. I've also started to get really dry and itchy at the very top of my legs (groin area) I look a dirt bag with what looks like I'm itching my lady bits!! 😀 hey ho I'm not complaining though as letrozole is remaining loyal to me!
Hugs Janette xxx
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Hi Helen 

excellent news  😀 I've been thinking of you and I'm very pleased you are a stable Mabel.  I'm off to Norway tomorrow so just popped "in" to see if you'd had news.

 

lots of love hopefully see you next month, take care.

 

Julia X 🙋

 

 

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hi carolyn,

i have never thought about what you say before ,but you have a valid point, when i think about it as the nurses were all over me the first appointment ,so yes i do think you are correct and will ask her when she is around next if she is only for primary patients ,because she sure has not been there for me ,yet in front of oncologist she is so nice,[two faced bitch].

renex

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Jeanette
Well done my letrozole buddy. .it's still doing its job ..did you ask about the itchy scalp today?
I just hope it's still working for me too as I don't get scanned til October. ...
I had my bone juice yesterday and feel slobby today so hopefully be back on form again tomorrow. .
Hugs xxx☺☺☺
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Stable Mabel reporting in!
I can relax again now for another 3 months.
Hugs Janette xxx
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Jeanette
We are all holding your hand ..for good news ..keep calm if you can ..rise above the stress! !
Renee
Glad u told the bcn what you thought ..don't think they are interested in secondary ladies ..we upset their stats for survival !!
Hugs xxx
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Well I've been sat here for over an hour only to be informed that my CT results have not yet been reported! So now have got to wait at least another half an hour for them to come across!......not a happy bunny!
Janette xxx
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hi ladies

,you are not alone carolyn,i was introduced to a bcn when diagnosed ,she gave out three cards with her number on and passed one to me and one each to my two sons ,also stated she or someone was available 24/7 ,what a laugh ,she has never ever got back to me,but last week at my onco appointment ,i met up with her ,she had the nerve to say ,,,so nice to see you again ,so she got it all barrels blazing plus in front of my onco and must say i felt much better for telling her .

good luck to all you ladies who are either suffering after treatment or waiting for results.

love reneex 

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Pippin, Stable Mabel is always good to hear! You get to walk around with a huge smile!

 

Maria, Waiting for the mail to deliver your results must really create anxiety! At least when you have a doctor's appointment for results, you know when you're getting them. 

 

Jelly, I'm sorry you are having such a rough time. Vomiting and not sleeping are the worse! Big hugs!!

 

FF

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Hello Maria
How nice to hear from you and it's a really stressful time waiting for results .
I haven't got a bcn at all ..hence why I use these forums for info. Back at my primary dx ..I almost fell over them everytime I went hospital but now at secondary ..they don't want to know .

I'm sure if tamoxifen stops working they might consider another hormone like letrozole which I take but if you are pre menopausal you might need to have zoladex ( I think) to switch woman's things off !!
You don't need to say it aloud ..shout and rant as we all understand how you feel.
Anyway. .thinking of that white envelope with scan results popping through your door any day. .we are holding your hand and sending you hugs
Xxxxx
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Jellytot
Phew you certainly have the full set of side effects ..how miserable for you and of course it's a new drug so we can't really help with any advice.
Maybe it will settle down after the first dose and you will feel back to a new kind of normal again.
Hugs xxx
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Morning ... I hope the rain has now left us all alone, it's been awful.  

 

Carolyn I hope you got on OK with your bone juice yesterday and no you are not alone running in and out quickly.  I always go into my onc appt meaning to have a grown up conversation but always end up running full speed to the door at the point he says any questions ...... X

 

janette I hope your headache has gone and this time tomorrow you will be relaxing again until the next scan x.

 

Jelly tot how awful that you have been hit by all those side effects.  I find I can deal with most things but nausea and vomiting gets me down big time.  Hopefully you will start feeling better soon.

 

I had a scan 2 weeks ago, my onc always writes to me with the results and I am currently feeling sick with worry.  It's an awful time isn't it and I don't think you can explain the feeling to anyone.  I have been diagnosed with primary/secondary for 19 months now and I haven't seen or heard from my Bcn for at least 17 months !  Is this normal?  I struggle to believe quite how bad the support network has been.  Thankfully I have a wonderful husband.    I am currently on tamoxifen and so fearful that if that is now not working I will be back on the chemo.  I feel well and not ready to go down that road again.

 

sorry for unloading but just needed to "say it out loud" xx

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Hello girls,

Sorry for my absence, I've been pretty poorly. The new meds have hit my system hard and I have had nausea, constipation, diarrhoea, headaches, insomnia, fatigue, gosh it's been a rollercoaster. I'm slowly getting used to them I think and have the nausea at least under control with metacloporamide.

I see my onc again on Friday next week, I just don't know if I can cope with the insomnia until then as it's pretty awful, am managing 3 hours sleep per night maximum. I must try not to nap in the day as that must make it worse. I know it's all for the greater good, but it's so very hard!

Love to all,

Jelly xx

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Hello pippin
It's a scary time but stable is ok ..not sure I understand more mets but bone juice doing its job bit though? Hospital lingo is very confusing xxxx
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Hi

Stable Mabel (I think) reporting in.

Onc started "I'm sorry but" and my heart sank more rapidly than a stone, in a split second I had plummeted a million feet. Then "your scan hasn't been reported yet" - relief but psychologically I didn't rise up to where I was before. More mets visible now 'cos of bone juice's good effects but thought to be stable. I'm not in denial; I'm sure of that but it really brought it home to me that one day without any warning I will hear those words again and for real. Felt a it "down" even though I'm stable. Weird.

Pippin

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Jeanette
You will be fine ..you tm was low but what with oncologists appointments and mammogram results ..that dreaded white envelope dropping through letterbox. ..no wander we eat so much chocolate and have so much stress ..
Oh to have our normal lives back
Xxx☺☺
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Thank you Helen and Carolyn, sat here with a banging headache wishing it was this time tomorrow! I always say to hubby that I wish he could just go in my place and let me know what she she says!!!
Glad to hear you both had good results today....long may it last!
Hugs Janette xxx
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Hello Helen
That's good news about stable ..as long as the treatment keeps the little blighters under control it's worth the side effects !
Jeanette ..all the best tomorrow my letrozole buddy. .hope all goes well and I will be thinking of you ...
Hugs everyone xxxx
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Hi lovely ladies
Carolyn - pleased your appointment went well today.
Janette- good luck for your results tomorrow.
FF- Hope you're enjoying the new job & your treatment is going well.

I had my onc appointment today and I am a stable Mabel!! No visible reduction in the liver mets but no progression either so I am staying on eribulin for another 2 cycles at least (9&10) . Bone Mets behaving as well. Very relieved.
I know what you mean about the BCN sitting in on appointment- I always think it's going to be bad news if she turns up.
Big ((((cyber) ))))hugs to you all
Helen x
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Glad you didn't have anything scary today Carolyn. I had bone juice today - it took an hour to arrive from the pharmacy so
didn't go out for lunch. Malfunctioning IT wastes such a lot of nurses time rebooting their terminals when they could be doing nursing

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Hi FF,
Sorry, didn't answer you before now. I'm going to Majorca for my holidays. Really looking forward to it. Best Wishes
Waffles xxx
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Thanks ladies ..so Im not alone ..
Well home now as we stopped for lunch ..my oncologist was busy with a very poorly lady so I saw his registrar ..she looked so young and if she should still be skipping in the school playground! !

She asked me if I was feeling well, any new pain and then would see me in 4 months. Apparently I only have scans 8 monthly so not due to October.

Then had my bone juice and then out of the hospital ..think I almost skipped to the car ..if hubby didn't go with me ..I think I would run before I went into clinic !!!!
Hugs and best of luck to all of you that have to do the same soon.....it's a very good diet though ..stress as it means loads of toilet visits !!
Hugs ☺☺☺
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Carolyn, With our time difference I'm hoping you are home and had good results!  I hate going through the big doors to enter. I aware those doors get bigger and bigger and more intimidating each time! I prefer to be an ostrich before appts. This living from scan to scan is he$$! I always tell myself after every scan visit to put my smile back on and go have fun. You have been given another 3 months! I love the oral drugs, so I'm not there every week. I try not to whine about the weekly infusions when I'm going. My brother was on kidney dialysis and went 3x a week. I took him and picked him up every Saturday. It was a commitment! FF

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Afternoon ladies.
Good luck today Carolyn, it never gets any easier going to see your onc unfortunately, I'm a nightmare, I sit in the waiting room and if I see my bcn hanging about i convince myself it's going to be bad news because she's there to support me!
I've got my 3 monthly appt tomorrow along with CT results and I'm dreading it.
Hugs Janette xxx
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hi carolyn ,

NO you are not a bad example to us at all,as i am sure if everyone was honest around 60%would feel the way you do ,i was a quivering wreck on friday when waiting to see my onc ,made worse as he was double booked so running late ,only my son being with me kept me from using my wheelchair  and racing out of there ,.

hope all has gone as planned 

Reneex

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Hi Carolyn,

 

I am the same. When I had my treatment for breast cancer in 2013 that took 8months,

I went onto autopilot and they could do anything to me to get rid of the cancer.

Since I was diagnosed with secondry bone in March this year I have become a shivering wreck on my 4 weekly visits.  

My stomach churns, but it does help with the constipation so I suppose thats a bit of a bonus.

 

These visits are vital so we just have to get on with it, perhaps we need some sort of therapy to deal with it. I just want my pilot back. (preferably tall, dark and handsome) I wish.

 

Regards

crissy

 

 

 

 

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Hello ladies
Well off to see oncologist and for my bone juice in an hour ...am I the only one that becomes a quivering wreck once I get to the hospital doors?
I get into clinic ..forget all the questions as just want to escape as quickly as possible!
I'm such a bad example to you all xxxx
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That is nice that you hear from your family every day! It does not help with the long evenings though. Lol it is still nice to have someone there! Thank goodness you do have your dog.Do you like to do crafts or play any games. Maybe you could invite a friend over for snacks and a game. I try to think of crazy ideas (excuses for a party) mostly small groups! Full moon party, chili cook off, fried chicken cook off, break the winter blues, fabulous fall, etc. Hugs! 

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hi funnyface

yes like you i use every available light both inside and out,i really hate it ,no one to talk to is the worst part for me ,dont get me wrong my family call every day when coming from work ,which is great but still very very long nights to fill,so its me and the dog plus t v for a few months ,,also like you i do like the snow when it falls ,but just the once will do me .

today is dreadful ,torrential rain and weather warnings out all over the place ,but my friend is coming for a few hours so shall be kept busy with little jobs i can not do from my wheelchair

take care 

reneex

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Renee and Carolyn, Winter darkness is pure torture to me! I feel like I barely make it through! Renee, I don't know how you get through it by yourself! I think I turn like every light in the house on! Plus the outside front spot lights on. Anything to make it look light! I do like a good snow though! But only one! Hate the cold!

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Hi Carolyn ,

like you i hate the long winter evenings ,especially since losing hubby ,i hated the dark nights even then but more so now just wish my life away with them and pray for spring again ,why can we not just have spring and summer ,PERFECT

take care 

Renee

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Hiya ff
Our weather seems to be mirroring yours ..it's feeling very autumny today ..I have cropped jeans on (capri I think u call them) and my ankles are chilly!!
Oh no ..hate winter and all that darkness and slippery pavements ...
Hugs xx