Anna, the whole forum is a mess, not just the bit you refer to. The threads are not in date order for a start and I can't find any continuity . I do not have a mobile phone, only my laptop, which was fine until today. I may not persevere with it all as it is a very user-unfriendly site and is frustrating and time consuming.
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.
I Hope this helps
Digital Community Officer
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.
@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.
Thanks Jill. I am such a dumbo when it come to techie stuff that I panic and get cross! xx
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 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!!
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!
@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.
@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). 💎
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!!
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
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.
@SallyG63: You should enter a bunch more contests asap -- you've clearly got some good luck hovering 'round you right now!
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.
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?
Yes thanks Jencat I've printed it too, going to show hubby so that "hopefully" he can understand a bit more.
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
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.
@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.
@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. 💐