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June 2018 Chemo Starters

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Re: June 2018 chemo starters: forum redesign

Hi Reddi

 

Thank you for your feedback regarding the new look responsive Forum.  I am sorry that you are having some issues.  To edit the subject line you need to be the one who started the thread, that hasnt changed.  To do so on mobile, click on the 3 grey dots in the top right hand corner of the post and then click edit.  That will also give you an option of changing the subject line as well.  Smiley Happy

 

I Hope this helps

 

Best wishes
Anna
Digital Community Officer

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June 2018 chemo starters: forum redesign

I tried to change the subject line of my 2 most recent posts to make the topic of each post somewhat clear. But I was only able to do that on my laptop; I didn't see an easy way to edit the subject when accessing the board from my Android mobile.

 

I'm imagining the redesign is supposed to make the forums more mobile-friendly. However, whatever team made the changes didn't take into account that most of the individual boards aren't (currently)  threaded by subject line/content; they're mostly rolling conversations, with each post touching on several topics and replying to lots of folks' posts. When you've got a board with 2,000+ posts like the June 2018 chemo starters (which is nothing close to Shi & Co's Oct 2017  chemo starters board) with haphazardly threaded posts (some posts made using the general reply button, some with a reply button on a specific post), the posts are going to be a mess. And now that posting requires replying to a specific message, and creates an alert titled with a 'subject line' populated by the first sentence of the post (rather than the general board name), it's a headache to parse the alerts, especially as I get alerts for quite a few boards (all those on which I've posted, and some others, too). Ugh.

 

I tend to really hate sites designed for mobile, even when I'm on my mobile, so I won't gripe about the design changes made on that front. (Though I'd be happy to do so, if BCC is looking for focus group feedback!)

 

Edited to add: For some reason, clicking on June 2018 chemo starters takes you to posts made in August 2018. Which makes no sense as a default view set-up, and I can't find where to play with those settings.

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June 2018 chemo starters: mindfulness app recs

@Kip Here's the 2018 best mindfulness apps list that I shared earlier on the board. I chose 10% Happier; I think someone else (can't find the post) recommended Headspace.

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Re: @SallyG63 Couldn't have put it more perfectly.

Please don’t leave ladies, I’ve posted on the cc’s site advising it’s not ideal and things need tweeking, so hopefully someone will try and do something for us all, it’s teething problems hopefully 🤞🤞💕💕Shi xx
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Re: @SallyG63 Couldn't have put it more perfectly.

Right, can't find a general reply button so I'll just say ladies, it's been delightful, good luck for all of you.

However oversaw this "upgrade" needs shooting as it's unusable, and I'm pretty tech savvy as my son is a website designer.

I'll not be back
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Re: @SallyG63 Couldn't have put it more perfectly.

Thanks Jill. I am such a dumbo when it come to techie stuff that I panic and get cross! xx

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Re: @SallyG63 Couldn't have put it more perfectly.

Optimissy click on the title of the message and it will let you reply .Its giving me a headache trying to find my way around .They should have sent us on a training course first !!!
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Re: @SallyG63 Couldn't have put it more perfectly.

Don't know if this is going to end up on the right page,  but here goes...

I can't work out how to find posts from before so may have asked this question...

I want to download an Mindfulness App to try, anyone got any ideas of what ones are best?

Thanks

Kip

xx

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Re: @SallyG63 Couldn't have put it more perfectly.

Nor me - can't even reply to a pm - horrible new website - help!

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Re: @SallyG63 Couldn't have put it more perfectly.

OMG whats happened?   I can't find anything on here?

 

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@SallyG63 Couldn't have put it more perfectly.

@SallyG63 Couldn't have put it more perfectly.
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Sally - that really made me laugh - it's a bit loud isn't...

Sally - that really made me laugh - it's a bit loud isn't it !
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Re: June 2018 Chemo Starters

Jesus, the forum looks like someone vomited trifle all over it. Not a good look at all.
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Re: June 2018 Chemo Starters

Thanks Reddi, yes hopefully I can keep on top of it and stop it getting worse.  I am going to look up the sleeves which look like tattoo sleeves... might be fun!!!

Hi CDC - glad you are home!!

 

Kip

xx

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Re: June 2018 Chemo Starters

@Kip My sister has been bugging me to get some sleeves for transatlantic long-haul fligjts, and now I feel inspired. I hope you've caught it so early that the sleeve is all you ever need.
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Re: June 2018 Chemo Starters

@cdc Welcome home! 🏠 💤 💕
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Re: June 2018 Chemo Starters

Well it’s been somewhat of a marathon and I still have a long road to recovery but so glad to be home and getting cosy on our new electric recliner. Huge thanks to everyone for the good wishes. Sorry for not replying to everyone personally but I’m just exhausted. Will catch up when I’m feeling more with it xxx
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Re: June 2018 Chemo Starters

Hi Ladies,

Firstly, CDC glad you are back on the ward and that it is in pleasant surroundings, always helps to recouperate when its nice to be there.  

Thanks for all the info regarding bras and fittings etc, will come in useful for me when I get round to getting a prosthetic too.

Just been to lymphodema clinic.. thankfully cording has sorted itself out pretty much but I have some slight lymphodema to my arm, they did measurements manually and then with some kind of instrument which measures liquid or something.. so now sporting the lovely arm compression sleeve.  Don't have to wear it all the time though, just when exercising or walking or doing gardening and housework.. anything strenuous really.  She wants to ensure that it doesn't get worse so its taking steps early.   Have to go back on 3 months for a review.  Actually got a bit teary when I left, as it always seems I come away with something else when I go to hopsital.. but in the scheme of things... whats a sleeve hey! 

Kip

xx

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Re: June 2018 Chemo Starters

@SallyG63 Seeing the list on Jill's link reminded me that my first BCN suggested Silima bras to me. There was one in particular she'd recommended -- the Anna -- knowing that I was trying to avoid the look and fit of typical full-cup bras. The side panels/strap of the Anna might still be cut too high for you, though, and it looks like a synthetic fabric rather than cotton. 

 

I'd also bookmarked a few on the Royce site: Supreme Comfort and Maisie. Neither is high cotton content, but from looking again it seems the lining/pockets are cotton.

 

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Re: June 2018 Chemo Starters

Good luck - hope you find something comfortable .

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Re: June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

Sally ❤️❤️Have you got a local Macmillan centre who you could speak to about finding a suitable bra and also the someone like me on here, I’m also going to see if any of the cc’s have any suppliers they could recommend for you too 😘😘💕💕Shi xx
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Re: June 2018 Chemo Starters

Wow You look stunning Red Rose! Love the detail especially the back. I’m finally on the ward now my BP has stabilised. Team seem to think that finishing chemo fairly recently has caused it to dip. This ward is sooooo beautiful! The family of a former patient paid for all the renovations a couple of years ago so I feel like I’m in a lovely hotel with 24/7 service. Really need some rest so will catch up properly once I’m home xxx
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Re: June 2018 Chemo Starters

Bum, my post from earlier got lost. I did say the dress is a must to give those at the back something nice to look at 🙂

Re the prosthesis fitting and bras we have nothing at my hospital. One BCN working out of a room not much bigger than a cupboard measuring herself and dishing out from the limited stock she has. No free bra or even anything to try. After my surgeries I've been left with a concave chest so nothing to hold a bra down which is why everything rides up. I also have loads of scarring and lumps and bumps near my arm pit so anything not really low cut at the sides rubs and hurts. If I'd have known then how affected I'd be I'd have told them not to do that surgery and taken my chances with chemo and radiotherapy killing the cancer in the nodes.
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Re: June 2018 Chemo Starters

Red rose 👍👍👍👍stunning, so beautifully elegant, you’ve no rum to be worried about at all. You enjoy trying in lots and lots but I think you’ve a major contender right there ❤️❤️💕💕💕Shi xx
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Re: June 2018 Chemo Starters

Well I wasn’t expecting that, A picture of a beautiful bride! The dress is lovely Redrose and I agree with what has been said by Reddi and Kip. You look grorgeous, I hope your day is all you dreamt of! X
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Re: June 2018 Chemo Starters

@RedRose -- Kip took the words out of my mouth. If this ends up being *The Dress*: Gorgeous. And if another dress usurps its position as fave: Gorgeous(er). 💎

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Re: June 2018 Chemo Starters

OMG RedRose.. you bought a tear to my eye... you look beautiful.  Love the dress and the beautiful back..  You were amazing to be out there trying on dresses 2 days post chemo.... love it.. .and no big tummy!!!  more updates please!!

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Re: June 2018 Chemo Starters

Morning ladies. For those of you requesting a wedding dress update, this is the favorite so far. Will be looking at others in the next couple of weeks but I do love the back on this one. Just not sure on wether it makes my tummy look big. Have to bare in mind thought that this dress was tried on 2 days after my last chemo session  xx

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Re: June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

Sally ... Just wanted to pop on and say great news you’re getting your prosthetic.... about time. I sent for a couple of NJ bras but sent them back as I wanted more cotton content... the fit was ok though. I’ve not tried Amoena yet but will be targeting cotton rich ones to try. I would really like seeing them in a shop.... would think there would be a shop/outlet in the London area. I did keep the Asda bras I sent for and they are ok after washing but they are lacey and I would prefer none but they aren’t irritating. I was given a bra from Womanzone with my foob which I was thankful for. Someone did mention m&s do a cotton zip front bra but I’ve yet to get in and eyeball it ... ive looked at it online ... only in white though. Might be worth a try. As you’re super lucky at the mo that bra could be the one ... Reddi ... pleased you’re getting sorted for rads. Hope your recovery is going well. Xx
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Re: June 2018 Chemo Starters

Morning ladies,

Reddi - shame you can't join the Add Aspirin trial, I have been asked but am waiting for a call to go ahead with it.   I have all the paperwork to read up on and think its worth a shot, nothing to scary about Aspirin I don't think.  Good news about Rads though, get that over and done with too.

SallyG - Wow you really are on a roll with the competitions aren't you.. .hope you do the lottery!   Also good news about the prosthetic finally available, I still haven't contacting them about one for me, I am waiting for sign off from Rads then I will do it, although my Knitted Knockers are perfect for me.   When you tried one, did you put it in the pocket of a bra?  Mine don't move at all but maybe thats because I've found a bra which fits and is comfortable, probably makes all the difference.  I have bras from George @ Asda but I think I remember you didn't get on with those?   I think I am lucky too that my scar is just one line running across to the start of my armpit and its quite flat and not sore or anything, nothing to rub on really.   They reopened the end of the MX scar to do the ANC and he did a good job, you'd never know its been open twice!  

 

The Zoladex needle sounds grim... you would be very brave to attempt to do that yourself.. I had to pysche myself up each time for the chemo ones and they were diddy.   Good news that the docs can do it though, saves a lot of travel time and I'm sure you'll get used to them.

 

Kip

xx

 

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Re: June 2018 Chemo Starters

Hi sally, sorry Nicola Jane haven’t got anything you like the look of. When you go for your fitting does your team have specialist fitter my unit did and they also had underwear to try on with it, you might be able to purchase in your unit if they do or ask them if the can recommend anywhere else. You will find what you are looking for and i’ll Keep eyes peeled too if I find anywhere else too that might help you. Well done winning another competition 👍👍reddi I think she should enter another one too, that big one on GMT’s they are currently running 👍👍💕💕Shi xx
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Re: June 2018 Chemo Starters

@SallyG63: You should enter a bunch more contests asap -- you've clearly got some good luck hovering 'round you right now! 

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Re: June 2018 Chemo Starters

Thanks, @SallyG63! When my oncologist asked me if I preferred any particular day of the week for the Zometa appointment, I'd asked her if there were any immediate side effects like achey legs, etc., and she mentioned the fluey symptoms / aches, so I opted for Mondays. (Since I'm freelance, I can work around this every 6 months, but I'm also a keen walker, and really want to be able to go out on the weekends, especially right now, so that I can get rid of my chemo weight gain!) She didn't mention taking paracetamol, but that totally make sense -- so huge thank you to you and the woman you met at Guys!

 

Most of all, congrats on finally getting the prothesis! I'll keep an eye out for other promising post-treatment bra options.

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Re: June 2018 Chemo Starters

I'm so fussy though ShI. I can't find anything. I've lookied on the Nicola Jane website and don't really like the look of much at all and those I do look too high cut right where I have extensive scarring. I do have a knitted knocker but everything rides up and moves and I'm forever having to adjust my underwear.

In good news though I've won another competition, this time on FB for a nice poreclaim dinner service. That's 2 things in just over a week.
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Re: June 2018 Chemo Starters

Hi sally great news you are getting your prosthesis. M&S do a good range of bras to fit them into (I’m fussy and found perfect ones in here, the staff were excellent and understanding too) also Nicola Jane do good range my cousin who is double mastectomy uses Nicola Jane garments and is very happy with them. If you’ve not already got yourself a knitted knocker it’s worth getting them, I found in the hot summer padding bra out with the stuffing from knitted knocker far more cool and comfortable in the summer and also for walking when we do our long walks. Reddi 😘😘so pleased you’ve consented to rads 👍💕💕Shi xx
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Re: June 2018 Chemo Starters

Hi Reddi.

I have my first Zometa infusion on 7th February. A lady I ran into on train that I met at guys said to take paracetamol before it because you can get shivery fluey symptoms after and paracetamol helps with that. She said she was wiped out for a day or two after her first one cos no-one told her so shed not taken anything beforehand.

My local hospital have finally got in the prosthesis that's been ordered for me because nothing they had in stock was suitable. Got an appointment for that 31/1 so looks like I'll finally (fingers crossed ) get my falsie nearly a year after my mastectomy. All I have to do now is manage to find a bra that I can actually wear it in that's not cut too high or lacy or the wrong material that I can't wear. I had to throw out all my bras from before and now only have the stretchy cropped top types which are unsuitable for the prosthesis because of the weight.

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Re: June 2018 Chemo Starters

Consented to radiotherapy today, but won't get tattoos or CT until next week or beginning of the week of 28th January. 

 

However, I unexpectedly started endocrine therapy today! Had my first Zoladex injection to put me into menopause -- and I am getting Zoladex and not tamoxifen because of my history of pulmonary embolism. I'd thought I might ask if I could be trained to give myself the injection, rather than having to go to have it done every 28 days (+/- 2 days), but *wow* it's a big needle -- 16-gauge (about 1/16th of an inch in diameter) and having now read the instructions, I don't think I'd be able to do it, even with all my GCSF training. Thankfully, I can get my GP to administer them going forward, rather than visiting the hospital every 4 weeks for the next few years. 

 

Aromatase inhibitor (exemestane/Aromasin) tablets to start with my 2nd Zoladex injection, when I should officially be menopausal. Bisphosphonate infusion no. 1 will be in February, to protect from osteoporosis caused by draining me of all my estrogen. I suspect my thick buzz of hair will be affected, too, @SallyG63 -- it's going to be quite the change in biochemistry.

 

Apparently, a small percentage of women develop eye problems from taking tamoxifen or AIs, which, given my eye problems during chemo, is yet another thing to monitor.

 

Sadly, no Add-Aspirin trial for me: I was told I can't participate as they won't accept folks with bilaterial breast cancer (too many variables). I was thinking of just taking low-dose aspirin on my own, but it's a weak aromatase inhibitor, and so I should check with the oncologists first.

 

@Kip, am I right in remembering that you're part of the Add-Aspirin trial? Or are you still deciding?

 

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Re: June 2018 Chemo Starters

Yes thanks Jencat I've printed it too, going to show hubby so that "hopefully" he can understand a bit more.

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Re: June 2018 Chemo Starters

Thanks Jencat you’ve just reminded me about this article and so I’ve just read it right through for the first time. What a brilliant piece! He really hits the nail on the head in so many areas. I’m printing it out too, to show to a couple people. I hope you are doing ok x
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Re: June 2018 Chemo Starters

Funny you were both talking about that article by Dr Peter Harvey, I'd just printed it off! It made me cry the first time I read it as I thought he's hit the nail on the head, that's exactly how I feel! I've given my ED a copy to read to hopefully get a bit of a better understanding of how I still feel sometimes xx

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Re: June 2018 Chemo Starters

@cdc I hope everything went very well yesterday. I know you're in hospital for the next few days and thus will be well looked after -- though I'm sure you will be happy when you are able to get home. Take care! xoxo
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Re: June 2018 Chemo Starters

p.s. The book @Michelle21 mentioned, Mindfulness: A Practical Guide to Finding Peace in a Frantic World, is really good. I read it years ago for work, and should dig up my copy.

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Re: June 2018 Chemo Starters

Ooh thanks Reddi ill do skme research and see what suits...  I mnow whst you mean about phones tho 

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Re: June 2018 Chemo Starters

@Kip I get notifications for the May 2018 surgery thread (maybe I asked to, way back when, since so many of your stories started there), and saw you were thinking about mindfulness resources. If you prefer longform reading or listening, there are the classic books by Jon Kabat-Zinn, all of which are available in audio editions. When I got diagnosed, I bought a copy of his Full Catastrophe Living, which is specifically about his mindfulness programme for those dealing with illness and/or pain, and the stressors and anxiety that come along for the ride. It can get pretty heavy, though.

 

A lot of the newer resources on mindfulness are indeed in the app space -- and they can be great in coaching you through a deep breathing or mini meditation session or whatever else, even timing you so that you aren't looking at the clock the whole time, which kinda defeats the purpose. I asked for app recommendations from some folks who are committed mindfulness practitioners and found that most of the apps were on this "best of 2018" list. (There may now be a 2019 version of the list.) I ended up trying the 10% Happier app, since I love the concept of mindfulness but tend to want to hear about the science that backs up what I'm doing and don't go for woo-woo stuff. In the end, I discovered that apps aren't a fit for me when it comes to mindfulness practice -- not because of the quality of the app, but because my phone is at least a 30% Stressier device, given the various work emails that show up on it! But I got some good breathing tips that, alongside some tactics I've gained from the counsellor I've been seeing, have helped with the anxiety and other emotions of treatment and (the beginnings of) recovery -- even (somewhat) with my impatience.

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Re: June 2018 Chemo Starters

Hi Reddi, ahh yes the tattoos will be one of the fun things in store. Actually it was all quite quick, a scan, tattoos and some measuring then had a chat and a tour and all done. Was given my first appt on that day and the full schedule when I had had my first one.
I did start Tamoxifen before rads but only about a couple of weeks, so all in all its not been long really and like you said it's hard to untangle what's doing what. When I think since end of Sept I have finished chemo had ANC surgery and 15 x rads plus starting Tamoxifen so I have to be patient I guess. But like you I want the old body back and want it now
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Re: June 2018 Chemo Starters

@Kip I'm seeing the oncologists this Wed (16 Jan). This was rescheduled from 2 Jan, when it conflicted with my 3-monthly heart scan (re: Herceptin). I'm thinking it will now be radiotherapy consent and maybe planning, too. I know I need a CT scan, tattoos, gating technique and position training... Feels like a lot to get done before I actually hit the sunbed.

 

Did you start endocrine therapy before / alongside RT, or after? I'm slightly worried about bigger effects on mood and potential for increase in hot flushes, versus chemo-induced menopause (which hasn't abated yet; like my eyebrows, my ovaries are in hiding). I've probably been reading too much on the Moving Forward forum. Perhaps better to wait and see what happens, eh?

 

Regardless, I think the most difficult thing is teasing out what are lingering SE of chemo and what are SE of the new procedures and treatments. Plus, I'm impatient. (See: reading Moving Foward forums, when I haven't even yet had RT planning.)

 

 

@Linda Thanks for that reminder -- bookmarking the link to the PDF.

 

@RedRose Another interested in a dress update, when you have one. 💐

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Re: June 2018 Chemo Starters

Oh I think I read that Linda, I must read it again, it was very good.

 

Reddi - have you had your planning for RT or is it this week? 

 

How is everyone else doing?  I'm still aching, tried to call Onc Nurse for some reassurance. am thinking all sorts and need calming down I think but she's on holiday so will have to try to calm myself until next week.   Having read loads of chats on this site many women suffer all sorts of things post chemo and during tamoxifen and other hormone stuff.   the SEs never seem to stop they just change to something else... ho hum...be positive be postive be positve.


RedRose - found that dress yet?

 

KTK - how are you doing?

 

Kip

xx