fed up

[JulieD]

tillie, glad to hear you've had a reasonable wek, good luck with chemo on Tuesday, hope you don't get too many nasty se's, try to take it easy and listen to your body. Sorry you've got the back pain again and hope that the scans will put your mind at rest.
Poured with rain last night so most of snow has cleared now, still quite chilly though! Keep cozy everone xx

[Guest user]

Hi Everyone,
Lovely to see everyone keeping in touch-this site is brilliant for that, and of course we all have something in common where we can share all the ups and downs.
Well, not had a bad week all in all, been working this week but chemo no.6 is tuesday so i will be home again.
Still have this bloody pain again in my back as before, the consultant is sending me for another bodyscan in a bout 5 weeks to see how/if the chemo is working. More waiting!!!!
Sending you all hugs and keep warm,
Lorna xxx

[JulieD]

livlassie glad your pj day helped,we need to just look after ourselves sometimes. Glad you've given the site another go, it really is such a good support.
lanii, it is horrid when you can't sleep, those hours seem the worst for our minds to go into overdrive so I hope the sleeping tablets help.
When I mentioned chat I was talking about live-chat on here on Tuesdays. I know you tried it a couple of weeks ago, it can be hard at the beginning specially if it's a busy night but we're a friendly bunch so do try it again sometime.
You are right there is a FB group which was born out of the chat group and is a closed group for secondary women it has grown since the site problems here some women use it instead of the forums others in addition to the forums. The FB group is by invitation only but if you are interested let me know and I can add you if I know your FB identity (send me a PM)
Still stuck indooirs because of snow but looks like it might have stopped now so hoping I can get out and get some bread.
Keep warm girls xx

[Guest user]

Hi All, I agree with you livlassie and Julie although I haven't been on this forum long I find it a a great source of info and comfort. I find my bad days are bad but seem to be able to forget on the good days. I take sleeping tablets which most times work from about 1am till 7ish sometimes I'm awake all night that is the worst time. Never mind snow finally stopped, we're going across to cumbria on Friday. Earlier in week Friday was supposed to be a nice day but typically forecast has changed and they are giving out weather warnings now. Never mind I always wanted to try skiing or maybe we should sledge across as I have zero balance. take care x

[Guest user]

ps Julie I have tried to get on facebook but cant find any chat forums for secondaries, do you know how to get on ? x

[livlassie]

Hey JulieD know . I had just begun to use these forums and really enjoyed them......and then the changes just threw me completely and scared me away! But i have missed the advice and the comfort it brought me to talk to you all. It's amazing how skewed your view of the world can be when you are depressed, isn't it? Then the fog clears and life is good again....till the next bloody time! My pj day has been good and i needed it as i have a few things to do tomorrow. Keep well.
Louisa x

[JulieD]

livlassie, welcome back! To be honest I haven't been using the forums much since the changes and I know quite a lt of women, partcularly secondaries don't come on as often.
Sorry to hear you've had a rotten time but delighted to hear you are getting back on track. I suffer from clinical depression so I know how horrid things can be when you are low, thankfully my anti D's generally keep me relatively ok. Enjoy your rest we all need the odd PJ day.
Keep in touch xx
PS Live chat is tonight 8.30-9.30

[livlassie]

Hello everyone. I haven't been on in here in ages and i don't know why because reading all your stories, experiences and opinionsmaked me feel less lonely. I was diagnosed with primary bc in july 2010 and then secondaries ( bone mets-ribs, spine, pelvis, skull) about six weeks later. On Letrozole and Zometa and well but a bit sore sometimes and about twenty years older than i was eighteen monthes ago, if you know what i mea!, But well and i am grateful for that. Had a very busy day yesterday so resting in bed today ( any excuse!)
You have all been through so much more than me, although i know that will change. I think you are all wonderful.
Something that helped me was a stress management and relaxation course i attended at Maggies in Edinburgh. I did really well as long as i practised all my techniques. Arouf Christmas it all came crashing down around me and i just didn't want to be here. Went to gp and got my anti depressants upped and started my relaxation techniques again. I am now in much better spirits and have begun reading the posts on here again. I think this time i'll hang around!
Hugs and courage to you all x

[JulieD]

Glad you are feeling better now tillie and hope the next dose of chemo is kinder to you and SE's will be less.
Sorry you are struggling a bit lanii,sometimes there doesn't seem to be enough hours in the day to fit all the medication in!! Hope the tiredness passes and you don't get many other SE's.I 've heard that that combination often works well so everything crossed for you.
Yes it is cold isn't it?! It looked like we were going to start to thaw a bit and we even saw a couple of buses BUT it has been snowing again since 3 0'clock - missed my Onc appt today because of weather. Never mind, at least it's warm indoors. x

[Guest user]

It really is horrible we've been snowed up for 2days our grandaughter has stayed 3 nights now because can't get her home, good job she doesn't mind staying. Started capecitabine and lapatinib because refused pertuzumab trial as heart functiontion not good enough. Struggling a bit taking as many tabs and fitting them around meals. Feeling very tired with it but only been on it for a few days hopefully will adjust. keep well.x

[Guest user]

bbbrrrrrrrrrrrrr!!!! Its so cold! hope everyones ok??? all very quiet???
Thanks Julie, yep feeling ok thank you, more chemo next week so watch this space!
big hugs,
Lorna x

[JulieD]

Hope everyne is keeping warm in the snow!.Tillie hope your chemo haze is better now and you've more energy.
Wishing everyone a good weekend xx

[Guest user]

Morning everyone,
sorry been quiet this week, but Monday chemo knocked the stuffing out of me and have just slept and slept!!! feeeling bit better today but trying to pace myself as i will end up over doing things otherwise - always happens when your having an 'up' day!!!!
sending all you lovelies big hugs,
back later,
Lorna xxx

[JulieD]

lanii
Sorry you had problems with livechat. It was good to see you on there and it really is a very friendly place but it was busy last night so I'm not surprized you felt a bit overwhelmed by it all. I'm not a great typist myself and I think we all get a bit behind and out of sync but you do get used to it - please try us again on a Tuesday night. Glad you had fun putting pram together, it's those happy moments that keep us going.
Julie x

[Guest user]

Hi everyone, it is a bitch of a life, treatments working for a while and then the dreaded news they've stopped again and having to try another round of whatever. I was 1st dx in 2000 at 44 and then again 2004 this time with endometrium cancer. I then had a good run until 2010 when I was dx with secondaries in lungs, bones and the lining of my stomach and bowels. Had letraszol, chemo radiotherapy herceptin and now about to start trial next week. I feel so down at times but then I have to drag myself up asnd think of my grandchildren no. 6 due in March. My daughters pram was delivered to my house today and we had a great hour putting it together. So onwards and upwards. positive thinking. Its good to read other peoples posts, it makes me feel better I hope it does the same for everyone else.
ps had a nightmare on the live chat forum I am so slow at typing Iwas 20 posts behind and when I did manage to type something the damn thing kept cutting me out. best wishes.

[JulieD]

Just a quick hello! Hope everyone is feeling brighter and stronger.
I was dx with bone mets in 2010 so coming up to 3rd anniversary in about 3 months, keep faith ladies and take hope from longer term secondary women, there are quite a few ......
Have3 as good a week as possible xx

[pussy]

Hi All
glad you all seem on an up day hope you had a nice day with your son tillie at rugby hope you are not hurting to much after being on the wii i did the xbox zumba hurt for a week will not do that gain will stick to my daily walk and a weekly swim 3 more weeks and i will be looking after my granddaughter whilst my daughter goes back to work initially for 3 months then part time from may when she goes into nursery for the mornings i hope i can cope with the lifting up and bending but we will play it by ear and hope i keep well enough to be able to do everything
Hope your husbands are now coping a bit better it as taken us 2 years and i stlll feel he does not understand how i feel and maybe i do not understand how he feels either it is so hard i have felt like walking out some days especally when we have had words but hopefully 2013 will see us come to terms more with it as i find survivors of more than 2 years
keep laughing in its face
kay

[Guest user]

Hi Everyone,
Just me checking to see how we are today? Im feeling a bit brighter, but woke at 4 this morning and have been awake since! Such a long day when your at your at work!!
Anyway, looking forward to Sunday, my son Thomas plays rugby and its turned into quite a social thing for me, so lots of laughs to look forward to with some good friends!!
Sending lots of love to you all,
xxxxx
PS: not sure if playing Wii tennis was such a good idea with back pain but it made me smile!!

[JulieD]

Hope everyone is feeling a bit brighter today and manage a descent weekend. Val glad you've got wigs hats etc sorted,it is a pain but as you know it will grow back and hopefully the sacrifice is more than worth it. Think you are thinking of one of the other Julie' s 're children as I don't have any.
Tilie,my partner took my dx badly and was more tearful than me at the beginning, we still cry separately and together but not as often now,though it can hit you at anytime!
Tawny glad you wentwent out with your sister and had a good day, a little bit of normality can make a difference.
Be kind to yourselves ladies xxx

[Tawny]

Lorna, sorry that you are worried. Hoping very much that your pains are not significant. Yes, I DO fancy a moan. Been real poorly since February (got liver n bone mets) - various stuff, but everything seems to be going from bad to worse. Due to have second cycle of chemo today but was cancelled as my platelets are super low. As I now have a spread to liver, am concerned about the delay. Sadly, I think I am heading downhill....BUT today was a good day as went to the cinema with my sis and watched a film I have been waiting to see for a looong time. These little things mean so much.

Life is so tough sometimes. Wishing you all the very best. We keep on trucking regardless.

Best wishes to you all.
Alison x

[Guest user]

Hi Claire,
How you doing?? hope you are ok???? keep in touch, feeling bit better tonight, hope it continues!!! Hubbies done all the bed changing and cleaning today(bless him),he doesnt know how im feeling as yet i feel as if were living in a bubble where were both frightened to talk in case we upset each other? so daft really as we should know each other so well by now and to some extent weve been here before but i spose last time it was curable.Bugger this is hard!!!
sending all you lovelies big hugs!!!!
xxxxx

[myfanwy18]

Loma, big hugs to you, you're doing great girl.
Love Claire

[myfanwy18]

Iorna, my eyes are rubbish, sorry! Claire

[Guest user]

Girls, thanks ever so much for taking the time to reply!!! Its great to hear from you-can we all keep in touch and help each other along this very bumpy road?? I try so hard not to complain, hubbys not coping so well so I try to 'get on' but today is just one of those days when i say'bugger it', i dont feel like smiling, im sure we all have those feelings??
your kind words havereally helped me today, lots of love to,Kay,Val & Julie
Val, it took me over a year to grow my hair into my dream style then I had to lose it all-but its only hair and it'll grow back, I have a 'Roland' as i call it but i usually wear a hat,especially at night as my head gets cold.Ive been lucky this time as i didnt lose my eyelashes but it also makes it harder for people to understand whats happening.I hope your new normal becomes a little more normal for you soon
Kay, thank you so much I hope you are ok? The roller coaster of emotions are hard to get to grips with arent they? up and down so quickly! I was ok yesterday and today i felt so helpless-very odd!!!!
please lets keep in touch,
lots of love,
lorna xxxx

[pussy]

Hi Tillie
you just keep letting out your feelings we know how you are feeling as we all have these sort of days now and again i can cry for no reason just comes on then other days i can convince myself they have made a mistake i feel so well this site helps us all in different ways and if you need to vent those feelings you could not have a better place
and scottishlass i am glad you have had 14 years even if it has been a roller coaster and i hope i will have the same length of time or even more as none of us wants to die i have just become a nana so i want to be here for a long time as do all of us but you have given me hope
and julie your words of re assurance support are warming
keep well
kay

[scottishlass]

Dear Tillie, Julie is a wise woman and a kind one too. I agree with all she says.
I had infusion 4 of Taxol yesterday and my hair was falling our more and more each day. So I took the plunge today and went for a new wig with my elder daughter. The hairdresser also shaved my head and I bought a turban for bedtime to keep me cosy and a hat thingy that I do not know f I really like so may take that back if it doesn't fit properly.
I have good days and bad days too Tillie. Days shen I am exhausted and days when I feel almost normal.....well my new normal. I have had bone mets for almost 14 years so I know all about the ups and downs that goes with the territory. Wil look out for your posts. Hope you feel better over the weeknd. Have a good one Julie. I know your girls are away home now. My dughter flies home on Sunday so will be crying all over again! Love to you both, Val

[Guest user]

Hi Julie,
Thank you for that.I have my next appt on Monday along with the chemo, so will ask the Oncologist and see what he says.
Just having a flat day today, my get up and go has got up and gone!!!
Hope your feeling ok??
xxxx

[JulieD]

Hi tillie,
Sorry you are feeling fed-up but that is quite normal so dn't be too tough on yourself. There are just days as a secondaries woman you will feel low.
Try not to worry too much about the pain coming back, pain doesn't always necessarilly equal growth/spread but of course in our situation will always freak us a bit.
When do you next see your team? I hope it's soon so you can voice your concerns and get some reassurance. Till then keep posting here and hopefully letting it out will help a bit, we're here to support and listen and moan with you. Hope you are feeling a bit brighter and the pain is easing.
Best wishes, Julie

[Guest user]

Hi
really just wanted someone to chat to?? Feeling so fed up today! I am having Chemo for secondary lung and bone mets, to cut a very long story short, the pain in my back and chest had gone but as my 5th round of chemo has been a little longer than 3 weeks from the last one it seems to have come back with a vengeance. Im really worried that when the chemo has finished it will return?? the last body scan showed that the tumours had reduced in size, but does the pain mean the damn things are growing again???? GGGrRRRRRRR! anyone fancy a moan?
Lorna