We are aware that there are bugs with our online community, and we still working through the bugs list and retrieving missing content. Thank you for your patience.
where is everyone?
I 'm not sure if its me , the new website or a combination - but I feel a bit out of touch - can't seem to get any news / new posts - is it all really quiet at the moment or am i looking in the wrong place - must say i don't really understand all the symbols next to the threads etc....anyway - feeling a bit S**t - i have lots of pain ( not really bad ) around the bottom of my ribs and under breasts but its niggling at me - surprisingly it seems to shift from one side to the other - my secs are in bones and liver - anyone any thoughts on this? ........hope all is ok with everyone, Jayne
Hi Jayne,
took me ages as well to get anywhere with this new site. Am slowly starting to figure it out but it will take a while. I think it's a bit easier now with the list on the left. Hope you'll find your way around soon. I don't know what the pain can be, have never heard of it shifting from one side to the other. Hope you'll feel better soon.
Peggy x
Hi
I think this is a good idea a new thread so we can start from scratch
and any newcomers can join in. We can try and make it new friendly.
Love Debsxxx
I'm getting more used to the site now.
Debs.. so sorry you're in pain..don't suffer..get some advice and some ideas on drugs to help.
I'm ploughing on with vinorilbine..first half of cycle 3 this morning. Sometimes I think my neck and chest tumours are softer and sometimes I don't. But lymphoedema (which is an indicator of how cnacer is doing for me) is much better than it has been...swollen hand and arm don't look quite so grotesque...
But I am very tired a lot of the time..and hate it.
I think we'll soon be back to the busy forum it was...hope so.
Meanwhile get shopping...
Jane x
Hi,
bought 2 rolls of Shand Kidd wallpaper for front bedroom may take a picture and use it for mine on the forum it is easier on the eye than looking at me.
Love Debsxxx
Debs, you trying to get us all in trouble again buying stuff!
Loved comment someone made about the shopping basket in the feedback thread.. really made me giggle but other than those of us who participated in the 'gormless' thread it went over many heads probably.
I am getting to grips again with it now, slowly, I am much happier with the side bar menu, if they can make changes so quick and listen to our other requests, then that is a positive.
*Waves* to you all whatevet you may look like (noticed how many of us are flowers!)
Nikki
Hi Jayne..sorry I can't help with the shifting pain..could it be a trapped nerve? I had a trapped nerve due to bone mets, okay now but one minute the pain was in my knee and the next day it would move to my hip. I hope you are able to get some advice.
Belinda..x..also a flower!
Shopping..I bought 3 linen shirts (love linen for summer) from good old M and S this week at a VERY reasonable price!
Jayne, if it's any consolation my bone mets pain shifts around a bit too - this morning I feel as if I've been on horseback for many hours if you get my drift!! I'm adopting the optimistic view that it's the Pamidronate getting to work on things ....
Yes, I've had a good spend in M&S this week too - 3 tops and a pair of jeans but now I need some shoes ... have also just ordered some very expensive hair products from the internet, my excuse being that my hair's got very dry since being on Tamoxifen.
I have just logged in so it was really shock to see the changes....
they look great .... once I get used to them!!!!
Happy Shopping everyone
Bikinggirl.x
Hi folks and thanks for all your thoughts - hopefully the rib pain will pass -(or not!) but i went for taxol number 15 today and because my toes and fingers were a bit numb ( yes, as well as rib pain but didn't think it worth a mention when I posted!!!!) they cancelled it and said if it didn't improve by next wednesday I couldn't have taxol again - so would have to stop cos the nerve damage could be pernament - anyone had this ? if it does go I would have to finish the cycle of 18 on a reduced dose - they said the rib pain could be down to the liver..... I was a bit gutted since it seems taxol aint shrinking liver mets , have pain in ribs and now no chemo - things are not going well, it seems . anyone any experience of this numbness on taxol?? hope tou have all had a better day........hey not all bad news - nintendo arrived - just have to work out how to play....xxxx
Enjoy the nintendo, re taxol I suffer really badly with tingly fingers and toes in fact my toes stick out in a funny fashion and feel numb.Re ribs is it like towards the end of pregnancy when rib cage feels as if it has moved? I had that feeling and when I had my chemo break it felt better. Now back on tax I am feeling the same, toes and fingers tingly but ribs o.k. up to now. Hope this helps and others come along soon.
Love Debsxxxx
Hi Debs
thanks for reply - what you say makes sense about the ribs - but did they continue to give you taxol with the toes and fingers feeling numb - i am being told that they wouldn't give me any more - actually toes feel a lot worse than fingers...and LOVE the shoes!!!!!! jaynex
Hello All
I am still here as well - have had taxol 16 on tuesday and feeling pretty ropey today. have been very busy with things and feeling quite stressed out myself. Changes on forum have not helped my general mood
jayne -I have some tingling in fingers and toes -I have told them about it, I dont think that they would cancel it but they would probably do a dose reduction - Can you ask for that? When I have my week off it gets better- maybe you can see if it is better with a week off? See if it gets better in the week off..it may well do that.
hope you get on well with the nintendo.
Cathyx
Hi,
I've got liver mets and did about 18 rounds in the ring on weekly taxol. I did get some neuropathy in my feet, which is still there on a very irregular basis but not much other numbness. I have always experienced vague and irregular twinges in the liver area which have always frightened me into thinking treatments are failing but I am learning that often they are just stress related. e.g. niggles for past 6 weeks, onc. app. yesterday and change of treatment plan = today not one little niggle left. The taxol kept my liver mets stable during that 6 months but did not actually shrink them. I too was gutted at the time but grew to accept it as part of the cancer shmancer deal we are dealt. I did have two good years on xeloda after this and they still keep saying there is plenty out there to try. So take heart!
Jenny
x
Thanks everyone - that really helps - soaked my feet in hot water and mustard last night ( my mums cure for sore feet) and kept on two pairs of socks!!!!! and they feel a bit better today - fingers and toes still a bit numb but hoopefully going in right direction - Cathy - do you have regular weeks off on taxol! Nice to see you on line - hope your stress levels reduce....and Jenny thanks for the info about how you responded - good to know i'm not alone and there are other options...... meanwhile i have just een told my brain age is 80 ! well, back to the brain training!!!!!! Jayne x
Hi everyone,
excercise to help fingers if I can explain it properly right hand tap index fingers on to thumb and carry on to little finger and then back do several times with both hands. It helps with the tingling.
Read it back .. not sure if I understand it and I know what I'm doing!
Sorry.
Love Debsxxx
Hi Jayne
I had 18 doses of Taxol in 2007 and am now on xeloda - have had some neuropathy in my feet and hands all that time. It was worst towards the end of my 18 on Taxol but they decided to continue with it as only affecting the toes with a little bit of odd sensation in the ball of the foot. Did improve in my 3-4 months off chemo but as soon as I started on xeloda came back. What was recommended this time and has kept it at manageable levels is acupuncture - evidently there is no published research really on this but the centre where I was referred have looked at figures of people treated and feel that about 2 out of 3 people (I think) benefit and that if there was going to be benefit you would know after 2-3 sessions. I have been taught now to self-needle and give myself acupuncture in the legs every 10 days or so (can't do it in my arm because of lymphoedema). It really does make a difference to the numbness - and to my balance which is also affected when the feet are bad (cos of lack of feedback evidently).
My onc was very sceptical - it was the MacMillan nurse who suggested it, so you might need to convince some people it's worth a go!
Take care Kay x
SOrry should also have said that I have also been told like Debs that exercising/moving the fingers will help - stimulates the nerves (which is probably what the acupuncture also does).
K x
Still here! Just takes time to get used to the new layout so I've been hesitant about posting.
Cathy sorry to hear you're feeling ropey, I have a week off next week and am meeting up with old school friends at the weekend so looking forward to that.
Debs hope they get the Hickman Line sorted
Love Kathryn
Hi Jaynemh,
Keep up with the brain training. It is so worth it! After I was suffering chemo brain I brought one 2 years ago to try to get the grey matter functioning again. Was devastated to be told brain age was 80, when I am only (!) 53, but talk about a challenge! I now have the youngest brain in the family (26!!!), which really annys my kids who are 32, 30 and 28!!! It is just a question of using it. If I leave off for a couple of months, brain age goes hurtling up again. Much better for you than TV, I think. Also hooked on their sudoko games, but I have run out of them, so had to buy paper book of puzzles, which isn't as much fun!!
thanks everyone - just wondering why they cancelled chemo and said wouldn't have another one unless it went when others clearly carry on ?? anyway - its still there ...but today i can blame the snow!!!!
Kay and Debs - i have been doing the exercises! think they help
and jaxw - my brain age has gone from 80 to 72!!!!!! but it took hours!!!!!!!!! enjoy the snow jayne
Forgot to say for the feet if you do 'Good Toes Naughty Toes' you may get cramp at first but that will improve!
Lovr Debsxxx
my toes are good , then naughty, good then naughty.......thanks for the tip Debs
Hi People,
Just logged on for first time in ages (I was on a course and commuting to London every day last week!). Now I can't find my way around at all. Is there any way of seeing all the discussions, or do we have to look under different categories? I haven't got time to go through all the different categories, but i used to like having a scan down the 'all discussions' to see what was going on. I can't believe we can't do that any more - it would make the site much more segregated into different groups....
Glad to hear most of you are well.
Love Jacquie
And another thing - is there a way of telling which posts you've already read, and which are new to you. I am logged in but can't see any difference between old and new.....
Jx
Hi jacksy
At the moment it is not possible to see which posts you've read and which ones are new to you, but we are looking at trying to change this as we are aware this is a problem.
Best wishes
Sam (BCC Facilitator)
Hi Jayne
I, too, am finding the new site a bit quiet and I think the number of posts has dropped off since the changeover.
I often wondered if others used the old site the same way as I did; ie, not looking at specific categories for new posts, but using the 'All Categories/discussions' on the opening page - and, judging by the comments all over the new website, they did.
I used to go to the Forums, using the automatic Log On facility and then work back through all new posts through the All Categories facility, roughly up to the time I'd last logged on. Impossible to miss new posts and only a few screens to scan. And with the bookmarking facility, it was easy to monitor threads (regardless of topic) that were of interest.
I think it's wrong to assume that if you have passed a stage of treatment, you no longer wish to comment on it. And that it's fair to say that you may want to add a remark or question to something that you are anticipating may affect you.
While the new site has many good features, I am finding it rather opaque and inflexible with regards to discovering new threads and maintaining existing ones.
X
S
I have not posted since the new site opened as I cannot check what has been said, what new posts, etc.
I have secondaries, but also feel that I sometimes have something to contribute to contribute to other areas, having had BC, IBC, local recurrence, brain mets, taxotere, FEC, herceptin, long lerm steroids, radiotherapy, WBR, capcitebine, 2 mastectomies, 2 infections in the 2 mastectomies, a seroma, and goodness knows what else.
The old site was great in that it let me review all active threads, and I could immediately see if there were any new posts.
I found out about Odyssey holidays from the old site, but I don;t think that I would have found that thread on the new site.
Is there any chance that the new site could be revised to put back these features?
I do hope so!
Love, Lynn
Yes the capacity to check easily for new posts was one of the best features of the last incarnation of the forums and such a pity that in all BCC's expsnive development process no one thought about this.
The main thing wrong with the old site was the limited private messageing system (which was there very usefully in the version of the forums I joined in 2004.)
I have queried the cost of the new website and new forums several times (this is the 4th incarnation since 2004) and really would like to know how much it all cost. I've got used to this new site now but I feel angry at the thought of how much money has been spent...priorities are wrong somewhere.
Jane
And them being so sensitive about the credit crunch!
Jane I wondered if you'd read the 'More about the new website in general' thread in the Our new website forum? It makes for 'interesting' reading I thought. Belinda.