cancel
Showing results for 
Search instead for 
Did you mean: 

June 2018 Chemo Starters

Kip
Member

Re: June 2018 Chemo Starters

Jill - thanks for heads up about the robot thingy.. not me going mad then!

Shi - I'll stick with the bearded look for a while longer then...good job its blonde!   Ironic that you all you think about is getting some hair back and then wham... you get it everywhere!

Reddi - glad you are ok from the Zometa...keep well!

Georgie - how are you today?

 

Just taken my first aspirin for the run-in period of the Add Aspirin trial...now just got to remember to take it every day!  Lovely sunny day here again, makes me feel so much better when the sun is out.  Just remembered to do the lymphadema exercises too.. eek...sleeve on for the morning too.. seems to be doing ok..doesn't look any bigger and doesn't hurt so thats all I can ask.   Legs and butt stiff as anythign today though...I have had to change Tamoxifen to a different brand as they said there is a shortage of Teva at moment.. so perhaps that doesn't help...also I poked and prodded yesterday... bad girl I know!

Kip

xx

 

Member

Re: June 2018 Chemo Starters

@Georgie - Well, so far, so good -- no obvious side effects about 8 hours after Zometa infusion. I'll report in again tomorrow!

Community Champion

Re: June 2018 Chemo Starters

The robot thing has been turned off for now - it's meant to help stop spam - they are seeing how it goes without it .

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi kip, leave the face fluff, it does go away, it’s just a bit strange to look like a fluffy chic face for a bit 😁 think they are still trying things with the new forum as the threads are all over the place on some and not taking you directly to latest posts, so there might be a few more changes yet. If you do get any problems please pm me, the threads are not reliable enough just now for me to pick any concerns up and relay to the mods. 💕💕✨✨Shi xx

Kip
Member

Re: June 2018 Chemo Starters

Morning all,

Morning Georgie good to hear from you, sorry you are still getting the side effects, not having had herceptin I can't comment but its amazing that so many people report all these side effects from teh varioius things we get given (herceptin, tamoxifen, letrozole etc) and yet many professionals deny there is a link when there so clearly is.   Depending on which person I speak to they either say that Tamoxifen causes aches and pains or no its not the drug is the menopause.. well as the drug has caused the bloomin menopause I'd say thats a link!  Oh dear turned into a rant...

Thanks for the comments about my hair, I am lucky that I have always had thick hair that grows quickly, although not grey and mad scientist like but as you say just having hair is great.  You'll get there, you still have some time until June, I found mine went from sort of sparse and stubbly to full coverage quite quickly once it got going.  I still use the "New" shampoo bar from Lush as suggested by Shi, I used to rub it on my eyebrow area too and they are back with avengance.. perhaps I shouldn't haven rubbed it there!!  Maybe it used to run down my chin which is why I have the beginnings of a fine pair of mutton chops??  Eeek.. anyone else that facial fluff still?  What should I do with it?   Never had this problem before.. oh the joys!

 

Reddi - hope your various treatments go well.. seems you have a full weeks this week?

Kip

xx

PS.. is it me or has the "I am a Robot" thingy disappeared?  ...

x

Member

Re: June 2018 Chemo Starters

Thanks so much Reddi.... would be interesting to hear how you fair after your various treatments.  

 

G G x 

Member

Re: June 2018 Chemo Starters

p.s. @Georgie - I'm also pretty sure that my perpetual runny nose is due to Herceptin.

Member

Re: June 2018 Chemo Starters

@Georgie - I have my first Zometa infusion tomorrow (right after Herceptin injection, which is right after radiotherapy). I'll report back on my experience, but the combination of stuff will make it hard to tease out the cause of anything (also have Zoladex injection and start AIs on Friday).

 

A tip: @Feenix, from the May 2018 surgery thread, mentioned that she was counselled by a fellow patient to take some paracetamol before Zometa to help with the flu-like symptoms that can sometimes hit. FWIW, I met someone last week who said she got herself all wound up with worry about what would happen with Zometa and she didn't experience any side effects. (She did have a rough time during chemo.) So, as ever, there's a range of possibilities...

Member

Re: June 2018 Chemo Starters

Hi all, 

Thanks for your replies, and Reddi, for your confirmation of side effects from herceptin.  

I wish I could meet even one professional in my team who would admit that there are side effects with this drug!  I know they don't happen to everyone, and that many will not experience the sleepless nights etc., but it certainly is not my imagination!  

Im so keen to have my hair back properly..... my daughter gets married in June, and I would love so much to have my hair back to style by then.  Kip I love your latest profile pic!  Your hair looks lovely, and if mine is as 'long' (!) as that by June 1st then I will be very happy 😊.  

I might go back to work part time at the end of this month.  Need something else to think about, and perhaps that will help with sleep too! 

Is anyone on zometa (zoledronic acid)?  It's for bones.  I have my second dose in March, but again the side effects include hair loss, plus lower immunity and aching and nausea, plus many many more!  I'm a bit terrified to have it....  

thanks 

Georgie xx 

Kip
Member

Re: June 2018 Chemo Starters

Shi,  oh yes I am a great participant in the duvet hokey cokey... last night I think I did it on repeat!   Afternoon naps sound lovely.. might have to participate.  

Kip

xx

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Kip 😘😘😁😁it’s the duvet cokey, you put you left leg in, you left leg out you do the duvet cokey and you shake it all about 😁😁it’s your new normal 😘😘afternoon naps are quite common too. Hi reddi 😘😘💕💕✨✨Shi xx

Kip
Member

Re: June 2018 Chemo Starters

Hi Reddi, you are so lucky with the sleeping... I wish my Mum had popped the vacuum on when I was small then... I am tossing and turning at the moment, hot or cold then stiff and crampy.. oh dear.   Funnily enough don't seem to tired during the day though.   maybe I get more sleep than I feel I do?

Kip

x

Member

Re: June 2018 Chemo Starters

@GeorgieGee I'm getting Herceptin, but also Zoladex to turn off my ovaries, and I'm having no trouble sleeping -- just wake up sometimes from hot flushes (less so than during chemo), and once I've regained a comfy body temp, I get back to sleep quickly. But I've always been a pretty good sleeper, even when I'm anxious about one thing or another. My mother says it's because she'd vacuum in the room with my crib when I was a baby, in hope I'd learn to sleep through anything. (Downside: I used to have a real problem sleeping through alarms.) I have found that I sleep the very best when I've had some good walking during the day -- though walking isn't the exercise for everyone. I've also been working tons over the past month, and getting back into a routine of work has helped me -- less time thinking about treatment, more time thinking about other stuff (but also taking more of a what-gets-done-gets-done attitude to it, as my OH has me under strict orders to decrease work-related stress).

 

Herceptin does sometimes cause hair thinning! I've been using the Lush red dot shampoo (called New) recommended by Shi and my hair has come back pretty well -- though it seems to have stalled, growth-wise over the last couple weeks. I'm definitely still in caps, as much because the little wiry grey stuff does not like to sit flat. Looks like I've got terrible static. And it doesn't look like anyone's idea of a haircut, not even a brutalist pixie, just yet.

 

How is the not-UTI pain? Has it got better for you? I hope so. 🤞

Kip
Member

Re: June 2018 Chemo Starters

Hello ladies,

hi Shi - thanks for dropping in .. .this is the third attempt at posting .. they keep disappearing.. perhaps I am a robot!   Must check into Club Tropicana as could do with a boogie and a cocktail!

Got signed off by radiotherapy yesterday, phew.   All well, they are happy with me and have appintment for first mammograme 11th April (exactly 1 year since diagnosis) then follow up appt on 23rd April.   Not looking forward to that but what will be will be.   Also asked about my stiff butt/legs etc and she doesn't think its anything sinister and has asked me to self refer to physio to see what they can do, but I can also request a scan if I want reassurance.  She said she would be very surprised if I wasnt stiff and achey as this is very common after chemo, rads and tamoxifen so have to go with it for a while and hopefully it will get better.   Going to try Glucosamine and Chondrin which she suggested too.

Hope everyone else is doing ok?

Kip

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi red rose 😘😘hows the dress shopping going? Have you found anything to rival that beautiful one you shared before? ❤️❤️❤️Not long now Mrs 😁😁😁hi June girls hope none of you got snowed in and any going through rads, hope alls well, club Tropicana thread awaits 🏖🏖🏖💕💕✨✨Shi xx

Kip
Member

Re: June 2018 Chemo Starters

hi RedRose,  those tattoos are incredible aren't they.   Unfortunately would look a bit daft on my flat chest but would be amazing for some people wouldn't they.  How are you doing?  Found "that" dress yet?

 

Member

Re: June 2018 Chemo Starters

https://m.facebook.com/clairelouiseweymouth/
Ladies, just came across this lady on Facebook giving free nipple tattoos to cancer patients and she does eyebrows and other treatments too. Can’t work out how to post it as a photo yet so please check out her post from January 19th 2017. They look amazing and share with whoever you think she can help 😘 xx
Member

Re: June 2018 Chemo Starters

Hi Ktk... thought I’d pop on here and say hi ... really good to see you are getting some energy back ... love the thought of cross trainer TV viewing... the only way to exercise. 

Feenix 

xx

Kip
Member

Re: June 2018 Chemo Starters

Hi Georgie Gee, lovely to have you back but sorry to hear you are suffering with SEs.   Lack of sleep just has to be one of the hardest things to deal with.. I think you can manage many things as long as you have had some decent sleep.   I finished chemo at the end of Sept, then had node clearance (thankfully none remaining had cancer in them) then had 15 x rads which finished at end of December . I have also started Tamoxifen in November.   You are not alone in finding it hard to get back some normality.  Although my sleeping is not too bad, its nowhere near like it was in the good ole days!   I have hot flushes during the night which wake me and I am suffering with terrible stiff joints which can be troublesome during the night too.   Not sure if the aches and pains are chemo hangover or Tamoxifen or everything.  But I was really hoping to ping back to the old me once treatment ended but that doesn't seem to happen for any of us really.   I guess we have to expect that.  A friend of mine who is 2 years clear now told me yesterday to be kind to ourselves and give ourselves time. . we have spent the good part of a year being poisoned and mutilated so its only understandable that things are creaking and moaning.   I just want the old me back but am trying hard to get to like the new one!   Luckily for me I work from home all the time (and just mornings) so its easy for me to carry on with that as its not always busy and I can crash on the sofa if I need to.  I;ve also developed minor lymphodema so have a sleeve to wear when exercising or doing heavy work...plus more exercises.  Just been doing stretching for the poorly side, can't miss a day or it seizes up.  Oh the joys.

Hair - mine is growing a lot but completely different to anything I had before,  completely grey, wiry and going curly.. not sure what to do with it.  But everyone's growth is different so I am sure yours will catch up.  I was HER- so dont have herceptin so can't comment on that but apparently Tamoxifen causes hair thinning too.. no escape

I hope the Dr gets to the bottom of your problems soon and that you can finally get a good nights sleep.

Kip

xx

ktk
Member

Re: June 2018 Chemo Starters

Great to hear from you Georgie Gee. Sorry to see that you are still having a rough time. I finished chemo in October and rads at first he end of November. However it has only been the last week or two that I have started to get some energy back. I am trying to do a bit of exercise and build my stamina up. I am signed off work until the end of June but could extend that if I want. I don’t have to go back until May, but half pay is difficult !! Having said that, I would struggle to return at the moment!

I am TN so no ongoing meds except bisphosphonate, so I can’t comment on your side effects. Hope your onc. can clarify things for you today. Good luck. Let us know the outcome. Lots of love Kx
Member

Re: June 2018 Chemo Starters

Hi everyone, 

 

I thought it time for a good old catch up 😊.  Have not been on here for a little while. 

As you can tell if you look at the time I posted this, I'm not a sleeping beauty this morning!! 

I think it is the herceptin that is the culprit.  I simply cannot sleep.  My GP stopped sleeping meds as he thought I might get addicted to them, so for the last 2 weeks, I have had terrible trouble, even though I'm exhausted emotionally and physically, getting to sleep.  Last 'night' I was still awake at 6 am.  I finished rads at the end of December and so am now just chilling and recuperating before I return to work.  Should be tired from that; I kind of am, but still cannot drop off to sleep. 

 

Occupational health have suggested I don't go back to work until end of Feb, but I am thinking I might start a bit before that.  Am on half pay too, so the sooner I have proper salary back, the better!   I will be on a phased return for 6 weeks, and can work from home too for some of that. 

How are you all getting on with returning to 'normal' lives and work? 

 

And how are ladies getting on with hair growth? 

Mine is very uneven and I have very patchy regrowth.  I am therefore still in scarves.  As some of you know, I was very unwell on chemo, and the oncologist stopped it after 4 rounds and 3 bouts of sepsis, each worse than the previous one.  So I finished chemo end of October.  I am led to believe that herceptin also slows down hair growth, so I think that is happening too.  But obviously I don't want to stop the herceptin because it is life saving for those of us with HER2 positive BC.  

 

I have also since way before Christmas, been having terrible pain which I assumed were 3 or 4 UTI infections, but my GP said that they could not find anything growing in samples so does not want to give any more antibiotics, which is understandable, of course.  Told my oncologist about this, and she arranged an MRI today, to rule out anything nasty.  When the pain and uti symptoms come, around once every 2 weeks, it is quite unbearable and onc prescribed oramorph, which I've thank fully only had to take once last week.  

 

It's  been nice catching up on everyone's news, and I'm sorry I fell off the edge of the forum a little while ago.  Would be interested to know if I am alone being able to do tigger impersonations all night long, or if others are finding herceptin having this effect?  I'm negative to hormone involvement so no tamoxifen or anything....

I guess it's  time to head on up to bed and try once more to sleep for a while.  

 

All the the best to everyone. 

 

Georgie Gee xx 

 

 

Member

Re: June 2018 chemo starters: forum redesign

@cdc How are things going? I realize you're still early on in your recovery, but I'm thinking of you and hoping everything goes smoothly.

ktk
Member

Re: June 2018 Chemo Starters

Thanks for the comprehensive feedback Becca. It is nice to know that someone is listening. This is such an important support mechanism for us and it would be s shame if anyone stopped using it. Kx
Community Manager

Re: June 2018 Chemo Starters

Hi all,

Thanks for your feedback so far! 

You've mentioned a couple of things which are settings so we've been working through those - unfortunately you can only get cracking on them after it's live but we're going through them all as quickly as possible, please do keep posting here with them as they come up in case there are any you spot before we do!
One issue you've mentioned is replying to individual messages. This was actually never a feature, 'quick reply' just meant replying without any formatting, your reply still went to the top of the thread whichever option you picked. However, that Facebook style direct replying to individual people in a thread is definitely something we want to add in, so it's on our list to discuss with the platform providers. 

Similarly, when you do reply via the reply button, that's the same as it was on the old version, the thread title just didn't stand out like it does now so you couldn't see so clearly that's how it was working, but it's the same: reply button - type message - post. I totally agree this is a strange way for it to work, it's more like an email than a Forum isn't it. As I say above, while it did always work that way, wedo want to customise it in the future, now we don't have the 'quick reply' alternative. 

Another thing you mentioned is fonts and colours, this is brand so we don't get too much of a choice about that, all our platforms have to be the big bold pink and orange styling now, but we are merging and there will be a rebrand as a result so I will definitely feedback the "trifle" reference, I'm sure they won't want that! 

Finally, just for some context around needing to upgrade - we were actually running on a very old system which had a lot of broken elements and wasn't mobile optimised. This was a problem for a few reasons: 1) we weren't able to fix some of those broken issues because the old platform had been retired 2) the vast majority of Forum users are mobile only, so it not working there had started to become a problem 3) about five years ago Google warned us that we wouldn't be searchable if we didn't become a mobile optimised platform. Slowly we've been moving down the ranks and finally this year we plummeted quite significantly, which means new people trying to find us as a support Forum were beginning not to be able to do that. Obviously as a cancer charity we do want to be able to provide this free support service and for anybody who needs it to be able to Google for help and find us. The platform the Forum runs on is quite expensive because it needs to hold a lot of content and a huge number of users. This meant that when it came to needing to upgrade, we had to start at their basic version as we unfortunately aren't in a financial position to have everything customised in the way that a large corporate company might be able to

Having said that, now we are mobile optimised and are merging with Breast Cancer Now, we will be a much bigger charity and our user base will grow because people can once again find us easily on Google. Both of these things mean we will be in a position to make customisations to our basic template so that overtime and with your help we can make our platform the best breast cancer Forum it can be.

Thank you for starting this post, I was going to create a feedback survery but since you're already so quick off the mark, do feel free to continue discussing it here. I'll read through them every couple of days and either put a change on the list or let you know whether there's anything like the brand colour palette that we can't so easily change. 

Thanks again, take care, Becca at Breast Cancer Care.
ktk
Member

Re: June 2018 chemo starters

Same as Kip. Eye brows and lashes went on Docetaxol and nails began to suffer. I did use dark polish, but about six to eight weeks later I lost my thumbnails. The rest just lifted a bit at the ends and look awful but haven’t fallen off. They are just growing back now really. Kx
Kip
Member

Re: June 2018 chemo starters

Hi,  don't panic... my hair began to sprout around the end of FEC 3 and then continued to grow throughout the 3 x Docetaxol's.  My nurse said its quite normal and that they don't know why, she said if they did 3 x T first it would start to grow when you start FEC.   Other ladies on my thread found they had started sprouting too.  My eyebrows and lashes didn't go until I began T but they were back within a couple of months really.

As for the nails it was only about T No 2 that began the ridges on the nails.  T definatley affects the fingers and toes more so keep and eye.  Around Christmas time (3 months after finishing chemo) my nails have become brittle and the white bits snapped clean off, wasn't painful just very short nails.  They are growing again now and the new growth at the bottom isn't ridged anymore.   Hope that helps, its always a worry isn't it.. I used to worry about getting side effects then worry about not having the ones I thought I should...

take care

Kip

PS just remembered... the day I had my first chemo, a lady sat opposite me on her 5th (3 x FEC and 2 x T) and I rememnber her telling me her hair was starting to sprout too!

Member

Re: June 2018 chemo starters

Hi Kip

I've just popped in from December thread. Hope you don't mind me asking as I'm sure I can remember you posting something before but just wondered when it was that your hair started to grow back. I've only had 2 FEC so far, due 3rd next week. Then scheduled to have 3 THP. I'm sure my hair has started to sprout a little so freaking out a little that chemo isn't working as well as it should!!! Also, I haven't had any discolouration or ridges on my nails. Is that more likely to happen with the Taxotere?

Thanks for your help x

Kip
Member

Re: June 2018 chemo starters

Fabulous KTK... go you!!   I'm very impressed..  its amazing how low on fitness you get over a few months isn't it.

ktk
Member

Re: June 2018 chemo starters

So I am beginning to feel a bit more normal! In an effort to lose some weight and regain fitness I have bought a cross trainer from gumtree! I can only do a couple of minutes at a time, but it adds up to 20-30 mins a day at the moment. And I can watch tv while I’m doing it!!🤣
Kip
Member

Re: June 2018 chemo starters

thanks

Community Champion

June 2018 chemo starters

Kip -Looks like you can change the name /title of your reply quite easily by clicking in the box and editing it .You don't want your thread to be called forum re-design forever !!
Kip
Member

Re: June 2018 chemo starters: forum redesign

Hi everyone, glad we are finding out ways back to the discussion.  I think I have worked out how to get to my threads now, I click on my little photo up in the right hand corner, then go to my profile.  When this loads, there is a drop down box somewhere to the left and you can select either "topics I participated in" or "my latest contributions'.  My latest contributions brings up any threads I am currently chatting on, i.e. this one or May Surgery etc.   So far that seems to work and I just reply to the last reply on there.  Not sure if this right but seems to work for me without bringing up endless lists of other threads.  I haven't dared change a topice heading or goodness knows what happens!

CDC - good to hear from you, glad all going well, keep up with resting, you look amazing on FB!!

Reddi - fingers crossed for February start date for Rads for you, been a wait hasn't it but they will fly by once you get going. 

I'm still feeling the stiffness but have started doing some gentle exercises for my butt tendons to build them up a bit and seems to help a bit, with heat pad and less walking hopefully this will sort it out.  Slept well last night too as put a pillow between my knees on my side and that definately helped.  Still have the Tamoxifen shuffle when I wake up with old lady knees and feet.  My morning routine is getting longer... I have started the Head Space App so do my 5 minute meditation, then I have to don the lovely lymphodema sleeve and do those exercises followed by arm massage and moisturise, then the butt ones and then finally get dressed... phew.. only glad I don't have to sort the wig and put that on as well these days as I'd need to be up at dawn!  Musn't moan if it all helps its worth it.  Sometimes I even fit in a 10 minute hoola hooping session whilst doing arm stretches... good job the neighbours can't see me!!

Kip

xx

 

Shi Community Champion
Community Champion

Re: June 2018 chemo starters: forum redesign

Hi redi, you’ve a busy time, the rads will fly by its like being in Groundhog Day and then all of a sudden your done, you are usually same time ever day for these and you’ll get a little club if you who all celebrate as you all finish I think you’ll enjoy your daily meet ups, we called ours the breakfast club because we were the first thing in the morning gang 😁😁you are doing amazing and you have heels of steel lady 💪💪💪💕💕💕✨✨✨Shi xx
Member

Re: June 2018 chemo starters: forum redesign

@cdc I don't think any of us understand how to reply to the general, rolling convo anymore. You're not alone.

 

So glad to hear you're resting and recuperating -- give your body the time it needs to heal and stitch back together. 💕 Are you watching or reading anything interesting? Or mostly napping and (I hope) being waited upon?

 

I had my RT planning meeting yesterday (CT, tattoos), but I'm not scheduled to have my first radiotherapy session until Thu, 7 Feb -- 56 days after my surgery. I'm not terribly pleased by this, but haven't heard back from the oncology secretary to confirm that the delay is fine. I'm guessing they gave me my first Zoladex injection, to suppress my ovaries, on 16 Jan in part to get me started on some treatment for the chemo-resistant but ER+ tumor in my left breast, which is the one getting irradiated. I'm also trying to feel assured by the fact that my surgeon got 3mm margins around the tumor. Herceptin injection no. 7 (of 18) was today; I'll get my first bisphosphonate infusion with no. 8 in three weeks' time. I'm feeling better about that infusion after learning that jawbone necrosis seems to happen in less than 1% of cases, and also after listening to Radio 4's From Our Home Correspondent from this past weekend, as the woman sharing her BC treatment journey talked a bit about starting bisphosponates herself. Have any of you been listening? It's not really news for any of us on this journey, but she's got a cozy voice.

Shi Community Champion
Community Champion

Re: June 2018 chemo starters: forum redesign

Redo 😘😘I don’t know what’s happening with the threads it a proper 🤯🤯🤯but hopefully if this thread has shot off from original june18 thread everyone will find it and hop over or if anyone stumbles on the original thread post on it that there’s this off shoot? I really don’t know, all we can do is 👭👭👭tight to each other and 😁😁😁otherwise we’d go 🤪🤪🤪🤪and we are 🤪🤪🤪🤪enough thanks to chemo aren’t we 😁😁😁your comment about the oct17 thread made me 🤣😂🤣😂🤣😂we have over 10,000 posts so if it had gone to page 1 that would have taken quite some navigating 🤣😂🤣😂🤣would have taken till this time next year 😂🤣😂🤣how you getting on? 💕💕✨✨Shi xx
Member

Re: June 2018 chemo starters: forum redesign

Thank you, @Shi! 🌸

 

I'm wary of changing the subject line so that it's back to referring to a general rolling conversation among June 2018 chemo starters, but this topic / thread has morphed from forum redesign to broader things -- and I suspect is no longer attached to the general thread. 😞

Shi Community Champion
Community Champion

Re: June 2018 chemo starters: forum redesign

Hi ladies 😘😘so pleased to see you all trying to post on this upgraded forum, it is a bit all over the place and I understand things are being worked on so please keep positive and don’t leave. Reddi I pointed out your posts to those that can help and the June 2018 thread so those that can help can take on board your issues and hopefully get things working for everyone again. Cdc rest up and take it steady if you let things settle carefully you’ll be ok quicker than you think 😘😘💕💕✨✨Shi xx
Member

Re: June 2018 chemo starters: forum redesign

Just working out if I am replying properly I’m here. The change of format is confusing me.  All going well with my recovery.  Just have to keep on top of my pain meds.  They had to split my pectoral muscles to reach my vessels for part of the op and that’s now the most painful part of my body at the moment,  

 

How do I see the conversations when I’m replying in general?  My memory is not what it was so I need to see the conversations to see what’s happening with everyone x

Member

Re: June 2018 chemo starters: forum redesign

@Georgie Please do post again! Eager to hear how things are going.

Member

Re: June 2018 chemo starters: forum redesign

Hello dear ladies, 

i was just about to let you know what's going on with me.... I know I haven't been on here for a while - but I am afraid of putting this in the wrong place now.  I will post and see what happens!  

 

Georgie 

Kip
Member

Re: June 2018 chemo starters: forum redesign

Oh dear Rosie that doesn't bode well does it.   I think I'm finding my way a bit, just does some very odd things sometimes and seems difficult to follow a conversation.  I won't give up though... these ladies are a god send to me!

Community Champion

Re: June 2018 chemo starters: forum redesign

Hi I am just browsing over posts this morning to see that other threads are struggling with the new format! I too accepted the invitation to take part in the trials but I gave up as I didn’t understand it either! 😬

Kip
Member

Re: June 2018 chemo starters: forum redesign

Hi all,  I hope I'm replying correctly,  this is awful, this forum is my lifeline, I click in and out all day long and now I can't find where I want to be... grrrr..
Anyway, I will hang in there and hopefully post in the correct place.  

Reddi - thanks for the advise on mindfullness apps... Ive downloaded HeadSpace to give that a try, only done 3 minutes so far, switching off a wired brain is quite difficult but a 3 minute sit in silence was nice though.

I hope we don't lose any ladies because of this site...can't do this without you guys.

 

Kip

xx

Shi Community Champion
Community Champion

Re: June 2018 chemo starters: forum redesign

Hi ladies, please hang on in with this new forum, it’s not ideal by a long way at the moment, hopefully tweaks will be made that will get it back to something like because it’s about all of us and what works for us and what everyone needs which is support from bccf and bcc, not to be driven crackers by a less than perfect upgrade, I’m sure those who implemented it thought it was going to be wonderful for everyone, unfortunately that is clearly not the case and I’m sure the last thing they would want is for us all to have stress cause by the upgrade which is what unfortunately has happened. We will get through this 👭👭👭like everything else on this journey keep ❤️❤️❤️😁😁👭💕💕💕✨✨✨Shi xx
ktk
Member

Re: June 2018 chemo starters: forum redesign

I actually signed up for the trial for the new forum, but it was so difficult to understand and use I gave up!! I couldn’t even work out how to give feedback that it was rubbish!!🤣🤣🤣
Member

Re: June 2018 chemo starters: forum redesign

@Anna_BCC Your forum rule -- that only the originator of a thread (or 'topic', to use the language in the Options pull-down menu) can change the thread subject/title -- sort of makes sense, since I could change the subject on a reply where the subject line originated with a post of mine...

 

But then why did my reply to @SallyG63 get a new subject line??? 

 

All I did was hit 'reply' under SallyG63's post, which had a subject line Re: June 2018 Chemo Starters, and my post was given a new subject line populated by the first sentence of my post (@SallyG63 Couldn't have put it more perfectly, with all replies to it as Re: @SallyG63 Couldn't have put it more perfectly).

 

@Jill1988 also replied, and had the same thing happen. Her post has the subject line 'Sally - that really made me laugh - it's a bit loud isn't...' But it ought to be part of the same thread as Sally's original post  -- as should mine. 

 

However, I just tested it, and anyone can edit the subject line on a post. I didn't realize that the subject line was a live input box on Android OS mobile, but it is. So you don't have to hit the menu buttons (there's no 'edit subject' option there, either); instead, you just click the text, delete it, and type something new in its place. 

 

Separately, I decided to put 'June 2018 chemo starters' in my new subject lines so that people reading an email alert of a new post would know what forum/sub-forum it came from. It seems silly to have to manually add that information, and I doubt I'm alone in getting alerts for multiple forums with some of the same users posting across them and finding it incredibly helpful to know the subforum up front.

 

I know all web redesigns having teething problems, and that users familiar with a site almost always dislike redesigns, but once they've spent time getting used to it, all is fine. But this redesign seems to be throwing up a lot of issues with threading and ordering of posts, at least in the monthly threads, which tend to be the most active. 

 

p.s. FWIW, I think there is just way too much dead air in the design, on both laptop/desktop and on Android OS mobile (I can't speak to iOS), for a forum. Unless your redesign has advertising blocks in mind, that dead air does not make the site more navigable -- it just forces the user to scroll more. I know this is pretty common with mobile-friendly designs these days, but it only makes sense for an advertising-heavy offer. (Does this redesign mean advertising is on the way?)

 

EDITED TO ADD: I'm not sure if this will help with everything, but for others struggling with the presentation of posts, try to navigate to the subforum (e.g., June 2018 Chemo Starters) and find the Options pull-down menu; if you're set to see Sort Newest to Oldest, then check the bottom of the page and make sure you're on page 1. This should put everything in straight chrono sequence, newest to oldest, regardless of the post topic/subject line.

Community Champion

Re: June 2018 chemo starters: forum redesign

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.

Community Manager

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

Member

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.

Member

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.