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anyone starting chemo in August?

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Re: anyone starting chemo in August?

Thanks roller coaster
Love and hugs
Will try salt water.
G
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Re: anyone starting chemo in August?

You could try salt water Georgina. I found it helps loads. Also I put bonjela on ulcers just before I eat so that doesn't hurt too much.

Just off for 2nd dunkin now. Will try and report back later. Hugs to all xx
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Re: anyone starting chemo in August?

Hi Maisie's
Had fec 1 last Wednesday mouth feels like it is shredding any advice as what is best clean teeth, diff lam. Anything else.
Thanks
Georgina
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Re: anyone starting chemo in August?

Enjoy debs go girl. My eyes itchy and sore I'm going to mention it today if I don't get anywhere il buy some simple optrex on way home. Good luck again Dixie chicks here goes xx
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Re: anyone starting chemo in August?

Morning ladies, good luck again to the dixie chicks today, go girls, sending big hugs to you all! Let us know when you are all safely back please.

Fingers crossed for Katherine who is hoping to get out if hospital today.

I'm on my way to Cleethorpes today for abit if seaside air so I will catch up  with you all later, debs x x x 

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Re: anyone starting chemo in August?

Morning Maisie's, well just took e mend so hope that works, my eyes are still really itchy & sore ,are anybody else's? Should I mention it today? hopefully sleep later as I only got little sleep!

Better get ready as my app 9.30!

Will hopefully txt later
Have a good day all, big hugs xxxxx
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Re: anyone starting chemo in August?

Good luck to everyone whos at the bar today!! heres hoping your se's are minimal xx

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Re: anyone starting chemo in August?

Good luck to you all who are up today, thinking about you all. Remember you are amazing  x

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Re: anyone starting chemo in August?

Good luck to all the Dixie chicks on second dunking and to chezz on her third , much love to all x
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Re: anyone starting chemo in August?

Thanks meg and don't work to hard in Wales. Speak to you later. Good luck to all up with me , daisy Megan, christy may, Clare, rollercoaster, chezz anyone else? Sorry if there are I know the list won't work for penny on here so please remind me if I ve forgotten. Hope all bloods are ok and you get your cocktails . I had terrible night all those steroids yesterday neve r mind small breakfast now a steroid induced whizz round house cleaning and all hooked up by 11 am . If you can daisy chicks just post your back . Have good days Maisie's each and everyone of you , here goes, yikes!!!!! And I don't have to worry about hair anymore yippee xx ju x. Got my phone on me so if anyone wants to txt whilst hooked up feel free xx ju x
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Re: anyone starting chemo in August?

Morning Maisies just want to say all the very best to Christymay, Lols and anyone else who is up at the bar today, hope you all get home with minimal SEs and hope everyone else has a good day. Love meg xxx
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Re: anyone starting chemo in August?

Hi to all, as you can see from the posting time we were really late home and I'm pooped so I just wanted to say that I'm thinking of you all especially my fellow dixie chicks. Hope we all manage ok tomorrow and have easier time than last time, mine is not until about 12:30 ish after I've seen the onc to see whether I can get the emend. If so i will have to wait around for it to work so could be a while. Will post asap, nite all, hugs to all,xx
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Re: anyone starting chemo in August?

Night night Maisie's, going to try & sleep so I'm ready for 2 nd dunking at 9.30 😓

Good luck other Dixie chicks , big hugs to you all xxxxxxxxxxx
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Re: anyone starting chemo in August?

Good luck to the dixie chicks tomorrow, sending big hugs girls x x 

Night night ladies x x 

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Re: anyone starting chemo in August?

Thanks, Genevre! Smiley Happy x

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Re: anyone starting chemo in August?

I'm with you Annie xx
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Re: anyone starting chemo in August?

Meg if you come on forum Ive sent you a pm to test that its working as you said you pm ed me the list of books and Ive not got any new messages so dont know if I need to do something else since forum changed

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Re: anyone starting chemo in August?

Totally agree with chez i use both but the face book page is more personal as we see each other and use our own names and as everyone said it's totally private I have about 500 friends and family on Facebook probably about 80 Of them know about my dx so I can use the Maisie page and know noone else can see , just need to get oh to help me upload my shaved head pic now 🙂
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Re: anyone starting chemo in August?

on the great fb debate vs forum Im still happy to use both. 

The one thing I do like about fb is that if you want you can upload pics of yourself and pets etc knowing only people in the group will see so as we have shaved our hair its been quite supportive to have others saying that we still look good.  I understand that some people dont like fb though so thats fair enough.

However my philosophy is we started this group and chemo together so we end it all together. whilst there are still people on the forum I will come on here too. 

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Re: anyone starting chemo in August?

Yes will do I think they are called macmillan girls night in

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Re: anyone starting chemo in August?

I haven't heard of 1 but def want to have 1 or go to 1, any more details plz let me know xxx
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Re: anyone starting chemo in August?

Thanks daisymegan for that, I haven't got a fb account anymore but want to join as I feel like I'm missing out on so much, will get the OH or daughter to set 1 up for me xxx
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Re: anyone starting chemo in August?

thats brilliant

Has anyone heard of a macmillan night in???

One of my new found BC friends is holding one soon think its like a macmillan coffee morning but at night so alcohol instead of coffee!

 

Has anyone held one or been to one?? 

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Re: anyone starting chemo in August?

FACEBOOK PAGE

 

I just wanted to say that the facebook page is great and much more manageable. I can see that some people are anti facebook but you can get a page anonymously.

First get a new email address with a different name  and make sure it has no connection to you in any other way ( hotmail is pretty easy or gmail) then sign up to facebook also with a different name. The reason for the new email is people can track you if you use your regular email address. Go through facebook settings and set everything to private. You can always deactivate it at any time.

I know this sounds as if I am  really dodgy - I'm not!!- but I have teenage kids and I know that they and their friends set up multiple silly facebook pages. 

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Re: anyone starting chemo in August?

Thanks Chezza, she has just signed up to do voluntary work with Macmillan too, she really is amazing xxx
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Re: anyone starting chemo in August?

It was a couple of days after last time that was the worst for me too! Good luck daisymegan xxxxx
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Re: anyone starting chemo in August?

and rightly proud of her Christy an admirable vocation

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Re: anyone starting chemo in August?

Good Luck Dixies. Not dreading tomorrow as much as the end of the week. Onc changed anti sickness tabs so I might not feel so affected mentally. Will be back to compare notes!

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Re: anyone starting chemo in August?

Aw Christymay good luck to her I've been there and done that . It's a hard job but its got some very good bits too. Well done to her xx ju x
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Re: anyone starting chemo in August?

Ivory mummy 70 plus people in our group is far too much for anyone to keep track of. The best thing is to identify a small number of people who are having the same regime as you at the same time so you can email or PM to support each other. Unfortunately the new style forum has done away with the profile pages where we used to be able to put details of our diagnosis and treatment. I just keep in touch with 3 people being treated at the same time as me, and one person who has similar interests, I can't possibly do justice to the needs of 65 other people!! Please don't cut yourself off completely xxx
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Re: anyone starting chemo in August?

My daughter Amie bless her is studying adult nursing. She is in her 2nd year, I'm so proud of her as she has worked so hard & so supportive to me! & because I'm not able to work she is working as she said I don't want you to worry about supporting me financially! Adore that girl I do xxxx
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Re: anyone starting chemo in August?

evening all

Hope all have had a good day despite the marked drop in temp.

 

Christy what is your daughter studying at uni??

 

Good luck fellow dixie chicks for tomorrow

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Re: anyone starting chemo in August?

Yes I'm up for second dunking tomorrow , I'm dreading it more this time than last time, I have steroids for 3 days after & they make me feel like I'm on another planet! Hopefully sickness not so bad as I've got e mend this time!
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Re: anyone starting chemo in August?

Evening Maisie's good luck for all Dixie chicks up at the bar tomorrow so glad your all joining me, are we all second timers except for chez who's up for number 3 how greedy chez!!!! Don't worry girls we will save you all some especially the lovely red one that you see later when visiting the loo ( number 1 girls) .
Meg welcome to Wales even though a bit of journey from Swansea, hope the accents understandable Hun. Don't work to hard tomorrow!!!!
I've been in bed for ages with sleep,cap,on as I told Sam lush , NOt but still don't like mart seeing me with no hair vain I know!!!!! These steroids really affect me I'm exhausted and yucky headache but it will pass I keep reminding myself of that.
Hope you all had good days and those that could got out in fresh air. Sounds like most Maisie's hair is on way out !! What an se to deal with.
All with appts tomorrow hope all goes well, all bar babes report back tomorrow if you can. Thanks for support girls xx night xx
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Re: anyone starting chemo in August?

Hi Maisie's,

Ivorymummy I was so so sad to reach your post, I felt so sad & lonely until I joined the forum, but please stick with it as the more you post the more you get noticed!i know nobody would intentionally leave you out, I feel like I've made some fantastic new friends, without meeting up!

I'm shattered been to spend the day with my daughter at her uni digs, lovely to see her even though she was hung over, bless her! lots of tears wen I left as she upset she can't be with me this wk 😥, have to make do with the OH. Even though think he would rather not!

As for the hair, it's going to be bic d as I've got a few patches now & it looks awful!

Tomorrow is 2nd dunking day & I'm dreading it, don't want to feel poorly again! Still got sore eyes!

Anyway enough moaning, how's everybody?
Xxxxxxxx
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Re: anyone starting chemo in August?

thanks sam i did try this but couldnt do it its on charge now but ill try xx not technical today xx

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Re: anyone starting chemo in August?

Pendragon  if you touch the bottom of the page it comes up with a back  arrow and a house. Touch the house then  touch web towards the top. x

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Re: anyone starting chemo in August?

Looks like gill and I posted at same time and have said pretty much the same thing , I agree with gilly I am on the face book page and still post on here every day as I know gill and a lot of the others do too zxx
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Re: anyone starting chemo in August?

I, too, rarely post now.    I hate the new format of this site - I find it hard to read and hard to follow, and I can't keep up with who's on what/when etc.  No one puts their regime, session and day number any more.

 

The only reason I look in is to find out about SEs and I'm looking at the July thread more now to see what TAX is going to be like.

 

The August group is too fragmented now with so many turning to FB.  The September thread is going the same way.

I hope BCC take note of the disenchantment of its current members, but until they do more and more people are going to drift away.

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Re: anyone starting chemo in August?

Hi ladies I'm back from a magical weekend away I hope everyone hAs managed to have a good weekend too 🙂 . Ivory I was so sad to read your post as I don't think anyone has intentionally ignored your posts , I do believe there's nearing on 70 of us now and it is so hard to keep up with everyone And all the posts , I agree that small alliances are made within the group and I suppose that can come across as clicks but you have to push yourself forwArd you can always pm me if you need to chat , we all are in the the same boAt but taking different routes of treatment etc so someone out there should beable to help and may be your breast nurse can help if you need further support ? Anyway hugs off me ivory x daisy I take zopiclone sleeping tablets every night but tend to avoid them during first few days of chemo not sure why I do lol , re alcohol I've not stopped but just don't go as crazy as I did lol I had A half bottle of champers ( as u do lol ) and a glass of wine last night , hope everyone up for bar tomorrow is ok and a special mention to my friend christy who Is up for her second dunking , much loves cxxx
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Re: anyone starting chemo in August?

Ivory mummy, I am so so sorry that you have felt left out on here. Our group is so huge now with over 70 people and I could not keep up with everyone, which is why I started the facebook group, it is so much easier to keep up with everyone and what is happening to them. I pop on here every day still and try and keep up with everyone.

Any of you can come and join the facebook group, it is so much easier than here, but it doesnt stop anyone posting here as well and most of us still do, we havent forgotten anyone or "left" the forum, any of you can join the page as well. It is completely private and none of your facebook friends can see anything you post on there xxx

 

https://www.facebook.com/groups/165815423611027/

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Re: anyone starting chemo in August?

sam could do with a basic course on my kindle lol but ill get there just want to download some photos now an how do u get from book reading back to the net lol. ??

just ate some graze box eton mess too trying to push my vit c up a bit dont think itll work im so tired.

sorry that we seem to miss some people out it is a big group unfortunately though no excuse either. im in northants too but am home all day if anyone wants to PM me xx

 

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Re: anyone starting chemo in August?

Dear Ivorymummy - I am sorry that you are leaving the forum because you feel you haven't made a real connection with the group.  The August Maisies was/is a big group and it is all too easy to overlook an absentee - please don't feel that that was intentional.  How you are and what you are going through is important.   I now rarely look at the forum as I am part of the Facebook group which I find much more straightforward to use, and people may simply have thought that you had migrated to the fb group as well.  I hope everything goes well for treatment on Friday.

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Re: anyone starting chemo in August?

Hi Maisies,

 

Had a busy couple of days. been out and about and clearing out- what else is girl to do when she is still waiting to start!!

Sorry to hear that you feel that you  don't want to be on here anymore Ivory mummy. It is a massive group and I know if I haven't been on for a couple of days it takes ages to try and catch up. If you  want to pm do that I am sure all of us will reply. I ma in Northanst if thats anywhere near you.  Hope you are taking care of yourself and are ready for your next round.

Dixxie chicks good luck for tomorrow- where have these three weeks gone?  Hope you have little SEs xx

Pendragon- how are getting on with yoru kindle fire- I had mine for Xmas and love it.

Welcome LittleLily- I am here by default- I hoped to start chemo in August   and still haven't started yet!! Hope you are as ready as can be for your next  dunk.

Geneve- don't worry about not knowing  what PM was, i didn't know what TNBC (triple negative breast cancer- just in case) and didn't wnat to ask incase I looked  a fool.

Ju my leaking roof has actually been fixed by the roofer in the house- so no leaking boobs or roofs!!

Right off now, nee dto make Eton Mess for dessert x

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Re: anyone starting chemo in August?

Hi welcome little lily, hair things awful I know I did it Tuesday evening, but now I've so many lovely hats that I add to and change I'm feeling a bit better about it all, I've got a wig and tried it other night but it feels to big at mo I think I need to get used to it. Still a bit shocked when I see myself in the mirror. Are you able to go to a look good feel better session they show you how to put makeup on and give you fab advice plus you get to keep really good freebies. Well worth your name down, think maggies and Macmillan run them.
I'm 2 nd chemo tomorrow along with the other Dixie chicks ( group names for chemo days) as there are so many of us which is great for support but so sad really. Good luck with next chemo keep posting Hun there's always a Maisie around to chat to xx ju
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Re: anyone starting chemo in August?

Dear Augusts (Maisie)

 

I hope you don't mind me popping in for a moment.

 

It is  a shame you have such a large group, as it does mean that some get missed. I know when I was going through chemo (February Valentines) I used to do one large post, and tried to put a comment to everyone in our group. However, some still fell by the wayside and stopped posting. We too have a closed fb page and now we only visit our thread intermittently, but the fb page is boiling hot.  I think also that when there are a lot of you, you tend to form 'alliances' with smaller groups connecting with each other to the exclusion of others. It's sad when someone feels left out, especially when they don't have a lot of family or friends to support them at home.

 

I notice you have a new member, Little Lily. So big hugs to all of you, and I hope the rest of your treatment doesn't become too unbearable.

 

Poemsgalore xxx

 

 

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Re: anyone starting chemo in August?

Welcome LittleLily (pretty name). Good luck on Wed - hopea ll goes according to plan
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Re: anyone starting chemo in August?

I've just had to ask my daughter what  a pm is (ok, I can't pretend I haven't just turned 60!).  How do these work - sounds a good idea because it's difficult to keep up with everyone in a big group, but I wouldn't want anyone to feel left out.  As long as we all feel someone is looking out for us. Good luck again for the tomorrows xxx

 

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Re: anyone starting chemo in August?

Ivorymummy, I'm really sorry.  I honestly  I know just how you feel because a couple of weeks ago when I joined I wondered if anyone had noticed and ended up crying until pennycrow welcomed me. I also think the fb group hasn't helped some people - I'm not on fb and normally too busy to want to be.  I don't think any of the fb group want to exclude anyone but I had wondered if some people weren't reading forum posts so much.  Please don't feel alone, if you ask for help from now on or just want to scream we'll be there for you.  It sounds as if you're having a really bad time coping on your own, I'm so sorry. Lots of us go on about se and hats and things but we're all facing the same thing, now and in the future. Best of luck for Friday and please shout anytime you want.Massive hugs.

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Re: anyone starting chemo in August?

Hi Maisies thank you for your good wishes but it wasn't actually my wedding I was just a guest!  I've been married 32 years and luckily had all my own hair to walk down the aisle!  Ivory we are up together on friday I think, didn't realise we had a group name tbh I must have missed it in maisie mayhem!  We have ended up as a very large group for August, sadly, I am sorry you have  felt ignored,  maybe pm s would be better for you then you will get a reply?  I think we maybe offload ses on here so we aren't moaning to our friends and families and we know all the lovely girls on here know exactly where we are coming from?  Xx