wow. just as you think youve cracked it, they go and change it! i only found you all by chance. i appreciate they feel it may attract newcomers more, but i think even they will struggle. what with the change of site, and a jumping curser, the whole thing is quite a challenge.
it is nice to see some of your pics,(you are very brave) but i have a new laptop, so i cant put mine on, none stored on it(thats my excuse anyway). does it mean we can put all kinds of pics and things on? i couldnt get online last night it said it wasnt ready, but i noticed some of you managed.
anyway best wishes to you all, hope we all get the hang of it soon.xx
it should be easy for us, we are a clever lot,(well we can pretend) it wont beat us.
All very confusing and I hope I’ve added some useful comments about the new site to the right thread! Had seen that Lorraine hadn’t found us when on that thread but glad to see you’re back her. It certainly isn’t easy to see where our topic should be now is it?
Hope everyone is doing well. Have you got an onc’s appt Lorraine? Hope you don’t have to wait too long and the news is good.
Angie - what’s your professional opinion of the site - that would be interesting! Maybe you had better PM me - which I believe now work instead of everyone being able to read them! Hope work is keeping you out of trouble and the move is smooth and you can de-stress!
Lisa - hope everything is going well with you and you’ve not got to decide any other decisions just yet and you get a break.
Lily - what a busy week since we met. I couldn’t get on here for a while so all m y thoughts and comments seem to have got lost somewhere in my brain! Sounds like the wedding dresses are divine - surprised you didn’t blub! Hope appt goes well tomorrow and you’ve sorted work out. Also that it goes well on Friday when you go back ALL DAY (arghhh) and you don’t get too tired. At least you can put your fet up at the weekend!
Bev - hope you’re OK, I daren’t go back a page at the moment to comment on things you’ve said as I’m not sure if I’ll lose things but I seem to recall you’ve alos gone back to work? If so I hope it’s going OK and remember to take it easy.
Julia - hope you are OK and fully cooked now?
Hi to everyone I’ve forgotten - this site is doing my head in!
Nicky xx
Hi,
someone tell me very simply about all these contacts and should I be contacting all of you? I have let people in and have no idea what that meansAt this rate I will have to get my son on here to explain it. Found most of the threads, well the ones I can remember anyway! Not many, so sorry anyone who I have ignored, just means I don’t know where you are yet. Someone I don’t know has sent 2 messages that i don’t understand to my inbox, but they are obviously not for me and they are not my contacts.HELP!!
Lisa you look like you know what to do, please explain the contacts. Nice Dennis by the way and hair is looking good if your pic is current. Can everyone see that or just people you have as contacts?
Nicky glad you found us,. At this rate it would be easier to take the M25 to talk.LOL. BTW the store is in Chineham centre and was stopped and about to start again soon, so still might get a trip in once it gets going. Lorraine this site is just going to make me eat more cakes, I know it!! Come in Julia, how are you doing with rads? Have you finished now?
Angie has the move happened yet? Good luck. Bev really hope work goes well. I have the onc and back to school on the same day, stress!!!
Hope they don’t do anything with the lump under my port scar tomorrow. Argggh
Lily x
Blimey - what a mess! Think I found this by accident so if I don’t get to talking to you for a while, I’m lost.
However, rads done on Monday - needless to say the champers came out! So far no irritation or soreness but still have about a week to go before it stops cooking. the rads operators said I was a very good patient and we had had a lot of laughs - this was after I had presented themm with the Thornton’s choccies - but they were a nice bunch. Thank heavens I don’t have to keep going there each day. Still I shouldn’t complain I was chatting to a girl with her second brain tumour, only about 28/30, who was having 35 of the bloody things. Poor kid.
They have given me the Arimidex which I thought was appropriate and I started that on Monday - one thing at a time is my motto. I’m going to have a bone density scan at some poiont and am still waiting for the ECG although I think Herceptin may be a risk too far for my dicky ticker.
That’s my latest news - I am working (well I think that is what they call it here!!) full time for the next two weeks and then shall start the diet and exercise. Will try to catch up with your news once I have worked out how this mess operates.
Hi Lily, go into your name at the top and if people have requeted you you can add them as a contact which means you can email messages to them. If you are looking for specific people then you can search for their user name, then add them - Im just getting the hang myself to be honest - will have a better look and let you know.
It’s a bad photo but its from a few weeks back! Hopefully get some more at the weekend albeit drunken ones as Im planning a very drunken birthday mixed with a wierd time as its when I found my lump! Can you believe we are a year down the line!
Better get back to work, glad everyone found the posts - bit of a trial, would be a nightmare if just diagnosed and trying to find way round.
Got appointment with breast surgeon to discuss recon on 18th Feb - he was supposed to have longer waiting list so scared he wants to bump me up the list — arrrgghh!
p.s. its easy to upload a photo if you have one on your p.c. - when entering your personal details in your profile there’s a browse button on the bottom, pic your photo and away you go!
Hi: Am going to see if my usual way of writing via Word will still work with the new website. Here goes – big catch up.
Lily and Nicky – your day together sounded great. Real shame we are all spread out around the country it would be nice to meet so we could put faces to words. However – maybe it is better to stick with the imagined visions of loveliness!!
Hope the working is going OK – interesting you are all getting back to it – ladies of leisure no more.
Lily you seem to have more appointments now than before – they obviously cannot do without your company! Glad you enjoyed the dressing up day. Always like the bit in 4 Weddings where she is trying dresses on – the slinky ones always look best I think – not the meringues.
Angie: The move should be about over isn’t it? Hope all is well with you and the Tamoxifen is not driving you too mad. Glad I managed to avoid that but am waiting to see what effect the Arimidex has. Your SE’s do not sound nice.
Lisa – belated happy birthday for Friday. The reconstruction sounds complicated but I think it will make you feel better about yourself and that is very important.
I put on a stone last year – being bone idle – and now have to get a grip. My friends with the best intentions say it was due to me having my mind on other things – chemo etc – but I know what I did – or didn’t do. The initial stress dropped 10lbs which went back on along with the rest – it is going to be hard work shifting that lot.
Haven’t watched all the skating but did see Todd disappearing into the wings – gather it was intentional but he wasn’t meant to disappear for so long – another John Sergeant. Let’s hope this bunch of judges have learned from the awful mob on Dancing.
Bevy: my hair is coming back quite thickly at the sides and back but still a bit thin on the top so not yet ready for general public but around the house and at friends’ houses it is OK. Intend to keep it pretty short when it does grow back at least during what we laughingly call the summer.
Right, have worked my way thru all the messages on here and am going to try the contacts thingy.
hi everyone
hope you all doing ok, been to drop in at local hospital, and was chatting to a lady, who has same diagnose as me, but she is 8 years down road, and she has a metal rod in back, catheter, and has had chemo 3 times, i really hope thats not my future, i dont think i could be chirrpy after all that.
getting used to site a little now, hope you all like teddy and flowers theyre sent with lots of love and best wishes x
Wow, souds like she has been through a lot but as everyone keeps telling me, no two people are the same, so lets hope we are all lucky and have lots of years ahead of us.
Im in a pondering mood today with me finding the lump today 12 months ago, boy what a lot can happen, I didnt think Id make it a year so fingers crossed we are all still tip tppying away when we are old and wrinkly!
When do people take their pills - I take mine at 10am and said shoudl stick to same time, however, this means I cant eat until 11am and never sorted in time to eat before 9!?!??
Well I might not be around much this weekend and Im off out with 12 work friends to a nearby town tomorrow and then out with all my girlfriends on Satruday, starting with a few at my house so need to tidy up.
Hope everyone has a lovely weekend - oh and the topics are back down the left hand side so should be easier to find things x
Hi,
well nothing changes just lost my post completely! The visit to the onc went well, had a touchy feely and he checked treatment notes and looked at latest bloods. he says he is very pleased with me. Hooray!The tumour markers have now gone to below the figure I started on, thank goodness as they had been going up and down a little. Just couldn’t get them out of my head once I noticed them on the results each time. I mentioned that I was freezing during the day and wearing 4 layers and a blanket by most evenings, despite being on tamoxifen. So got sent for a thyroid test plus something else. There were 34 people ahead of us for bloods(2nd this week!)so it was lunchtime by the time I got back to work again.Had a lovely time at school seeing all the kids again and I could hardly take a step anywhere without someone shouting hello or welcoming me back, which was so nice. Even the naughty boys!! I also taught in a class and really enjoyed it, so one under the belt. So sailing along happily until someone showed me what I will be doing soon and was totally overwhelmed. Not only the huge jump in hours to work but also expected to run between buildings and not ground floors either. I ended up quoting the disability act to the person who did it. It means carrying things all the time and nothing like the boss had told me I would be doing. So came home and had a good cry and going back in tomorrow to hopefully arrange something better in a less emotional state.It should be ok but if not I will just go off sick again, probably with lymphodeama!! Anyway hopeful things will be settled with no fuss.
LIsa, still not got the contact bit. I don’t have Nicky or Bev yet on there. If I accept you, do I automatically go on your contacts too. Too much in one day, so muddled. I like seeing all your photos looking at me when I sign in. Enjoy the birthday celebrations, mine is on Monday. Twinning again, quite close dtaes and Nicky and Angie too. How do I request a contact then?
Julia, hope the rad burn keeps cool and well done for finishing them. More champers!!LOL. Any excuse these days!!I too have to lose weight but it is supposed to be hard on hormones. Great! What I would really like is to need the type of thyroid tablets that make your metabolism speed up, bet it is either ok or I get the other type!! The arimidex sounds like a good choice. I asked my onc about herceptin and he said I can’t have it as ER+ and not HER2+++. Not sure about yours, are you perhaps both? I am only hormone sensitive.
Not sure how the text has all gone sidewards now!Angie, nice to see your photo, I assume it must be a Tommy original, very nice. Lorraine thank you for the flowers which are everlasting and the teddy. That poor lady. When do you get your results, we are all wishing for the best. No we won’t let that happen to you.
Nicky I nearly forgot I have to go to work every day now.LOL. Hoping that hubby will need to visit your way and if so will insist it is in a holiday so I can tag along. I will need a lie in at the weekend but wide awake right now as so much concentration needed. Not only has the forum changed but modem cable has burnt out so on a mobile wireless in the lounge window to get the signal!Hope you are ok, no doubt you are out and about doing things. How was the party and also the film?
Bev have you found us yet.
Lily x
im so glad theyve put the left hand column back. just off to tax office, to sort out self assesment, and then hairdressers. ive got over the shock of chat with lady yesterday, and as we know everyones case is different, so im back to wishful thinking. instead of stinking thinking. lily glad you had a good welcome back to school, hope you sort out little niggles, theyre could be one blessing in those stairs, lots of lost calories, which means you could carry on with cream cakes. (yumnmy yummy). thanks for well wishes everyone. have a good day. x
Hi ladies
Phew, we all seem to have made it, yet again, to the right place. Great to see everyone on here still.
What with looking at a pc screen all day and coping with 2 daughters doing homework I haven’t been on here for a day or so but have now caught up with all the posts. I’ll try to get some sort of photo on here but it won’t be me, possibly a side shot if it is me, if not something I like. Definitely don’t like the grey image that’s there until you put your own on. However, at least our requests seem to have been listened to and the site is much easier to use and to look at.
Julia - glad the fizz came out and you’ve celebrated the end of the intrusive treatment - hooray! Guess all of us on Arimidex and all of those on Tamoxifen should swap expreiences if they happen. I know both Lisa and I have had headaches on Ari which are worrying when you read other posts on here. They seem to come and go, which is the conclusion from several threads on here.
Lily - so glad your 1st day went well, both at the oncs and at school. Definitely quote the Dis Act - there’s a discussion going on right now about this, can’t think where but it involves another teacher. Chineham is MY Tesco so if you are visiting then drop in and you won’t have to do the drive yourself, otherwise we’ll sort another ‘meet’ once you’re over the shock of work! HB for Monday if we don’t speak before. By the way party was a great success and hardly any clearing up for me! Just a lot of nagging of YD to get it done! The film Slumdog Millionaire was great - well worth seeing and well worth the awards it’s been getting.
Lorraine - you sound very upbeat at the moment - hope that is the case and you are in a good place. It’s quite worrying though when you here of other 2ndary stories! Luckily any of the ladies I see when I get my bisphos who also have bone mets seem to be doing fine and there’s no scary stories! I get worried about all sorts of twinges and assume I’ll have some routine scans soon which I hope will say everything is OK but I’ll just have to wait for the appts to come through. I’ve eventually got through my complementary therapy appt at the local hospice (don’t go into shock everyone - they give them for us mets girls on an out patient basis). I go on Monday afternoon and talk to the therapist and get a short treatment. I can then have 5 other treatments (for free!) and I can’t wait to get a good back massage or head massage by someone who knows what they’re doing with regards to BC. I hope to report back in a very chilled out way next week!
Lisa - have a great weekend - you need it and it sounds like you’ve got it sorted. Put the BC to bed and enjoy yourself. Gulp about the speed of the surgeon’s appt but at least you can talk about it and decide what to do even if it means putting it on hold for a while. We expect a report back after the weekend of all the bits you remember
Bev - Glad you enjoy work - it makes such a difference doesn’t it? However I know what you mean about wearing the wig until you are ready to ditch it. It has to be the right time for you otherwise you’ll feel rotten about yourself rather than feeling good. I couldn’t have taken mine off sooner than I did but I’m so pleased now. Most people, well except my family! have seen me and been very positive. It makes me feel so much better with out my ‘disguise’ and more like the real me. I will be keeping it fairly short though but would prefer a bit more length before I’m really happy with it.
Angie - guess you’re tied up with the move - good luck and hope it stays dry for you. Looks like it may be very cold and I hope the snow stays away long enough for you to be settled in your new home - please tell us about it when you get up and running.
Have a great weekend everyone, I hope I’ve not missed anyone out but it’s difficult to tell. Also hope I don’t lose this long message! We’ve got a quiet weekend but a few walks involved mainly to the local pub!
Take care
Nicky xx
i am feeling a little more positive now, ive put frightning stories behind me. we too can have alternative therapy, relaxation, reflexology at our local hospice, and theres a drop in on a thurs,were we do ti chi and have a chat. but my oncologist and the therapist says i cant have massage, so ive gone for reflexology, lovely especially seeing as its free. managed to have hair coloured today, it was a treat, wish i could get that done for free. i cant remember your history, how long you had bone mets and where are they?
lily 2000
hope everythings ok, and your settling into work ok. dont be trying to do to much when you get home though. bet its bringing out the good side in some of the teenagers you work with. cos theyre all lovely underneath really.
everyone have a great weekend, have some fun and laughter.x
Hi,
well pleased to say that the second day back at work went much better so feeling it was the right thing to raise all my worries. I have been told I can arrive at 10 whenever I don’t have a first lesson and leave at 1.30 when no last lesson, that was an added bonus!!! They have also taken a lot of classes off me and where I share a class, told the other teacher they have to do everything for me in terms of marking and planning. This has meant that I don’t have so much walking around too, even though I am still not in the building I wanted to be. Still you have to compromise on some things. So feeling quite happy about being back now. Most of all great to be getting my wages again!
Lorraine, glad to hear you a bit more tigger bouncy again. You do a great job of keeping everyone very positive with your lovely attitude to life, so i hope we can all do the same for you when you need it. How is your son’s hand now? Doesn’t hair dye make your hair feel soft andd well conditioned? I could do mine every week just for that! I very rarely fall out with kids at school. They have to really try hard for a long time to get me rattled, so I get on with most of them. I have a real soft spot for Dennis the menaces though. Nicky brilliant that it is the right store.It is a minor refresh so not many visits planned unfortunately, shame they are not extending it. Still it is a possibility. I need to look for an image too but it won’t be me as so easy to google things. If you remember what that caes was about let me know but things look ok now. I was dealing with someone who is not unpleasant but devoid of understanding about any illness. Therapies sound lovely, make the most of them and enjoy! Hi to everyone else and hope you don’t get too much snow.
Lily x
glad work went well, i think you probably get on with the youngsters because you sound young at heart yourself. i think it helps to remember what we were like at that age, we thought we knew it all, it was so confusing and scarey at times, which explains their behavouir at times. i personally enjoy teenagers at the moment they make me smile. how many hours do you have to work lily? just remember have some fun the rest of the time, but i dont think i need to tell you that. what you said about me being positive, is how i normally feel now, after years of worrying about problems i couldnt solve. but i just seem to be having a little blip at the moment but i will keep riding on through it. and i appreciate everyones help on here while im having these difficult moments.
nicky 08
hope your having a good weekend.
all you other lovely ladies, hope your having a knees up this weekend. you deserve it.
Hi everyone,
Lorraine I work full time as a teacher but the boss is letting me do late starts and early finishes for my first 2 and a bit weeks to let me in gently. Then it will be reviewed again. I have worked from toddler age up to 18 and like all stages. I think teenagers can often be the most needy.I have been very much a workaholic in the past but intend to balance my home life better from now on if I can. I am hoping not to get too much snow as I have a check up on Monday with my surgeon.
We all went out for a meal tonight to celebrate my son’s birthday today and mine on Monday. We went to an American theme restaurant so had candles in our puddings and the staff singing followed by ‘congratulations’ music blasting us. It seemed everyone in the place had a birthday, which was funny as they put the lights out each time and we were in the dark so often. Oh actually remembered is cards so for once I did not get the bill. I always say it is like going out with Prince Charles, LOL. Everyone came back to our house and there were bodies everywhere, just what I love most, everyone home again. Then someone threw a ball of wrapping paper and next thing war broke out and everyone joined in!LOL. We were all throwing rolled up paper at each other. What a laugh, glad I did not have to pick it up. I am feeling a bit stiff in the joints nowadays, guess it is the hormones. Must go now as really tired after son’s friends here till after 1 am yesterday and some stayed over.
Wrap up warm its getting chilly. I know some of you will be pleased about the cold, not me, still freezing
hugs
Lily x
lily so glad youve had a good night out, just what the doctor ordered.and even better if it was on oh and having family around is great, my grandaughter stayed last night and crept into our bed, its lovely.
sounds like your employers are being thoughtful, which you need at the moment. do you have to work so many hours, or is there a chance you could cut them? im only saying that because i really felt tired when i went back shortly and dont know if i could ever cope with full time again, but if it your choice, i really wish you all the best. i too ache all over, dont know if its the tamoxifen, (blame it for everything nowadays) or if i would have felt like this anyway.
i dont know whats up with me lately, im bored very easily but cant be bothered to start anything. im sure my hormones are affecting my mood. (oh i forgot it must be the tamoxifen.
might come back on in a min, son is asking to be fed, what are they like, he would do it himself, but hand still in support.
Hi: 'Tis Monday and snowy and I’m at work instead of being at home in the warm!
HAPPY BIRTHDAY LILY!
Have done my first week on Arimidex and so far no SE’s but I think it takes about 3 weeks for it to kick in – wait and see time again. The rad effects are nil! Just a bit pinker that the other one. I went to Neals Yard Remedies the other day and they recommended a cream of Aloe Vera, Urtica and Lavender. And no it does not smell lovely but does work. No itchy, no soreness – so far. The guy there said that aqueous is OK but it doesn’t get into the skin but this stuff would. Well, it seems to work for me – I looked up urtica and it is made from stinging nettles!
Lily: glad your return to work is going so well and they are appreciating you. Like your comment about thyroid pills – why can’t they add some good SE’s to these bloody pills – like drop a stone overnight, skin like a goddess, thick lustrous hair and nails that never split or flake. Now we would all that those by the handful.
Have added the glucosamine and chrondrotin to my other stuff hopefully to waylay the achy bones. From what I remember of my path report I am HER2+ (not sure how many pluses) but I am rapidly coming to the conclusion that Herceptin may be a risk too far for me. I am more conscious of my tachy thing now and it does go off all the time.
Like Nicky I am getting sick of the wig – in fact this morning I got in the car to leave for work and only realised I didn’t have it on when it was cold – I don’t wear it at home.
Lorraine: Know what you mean about motivation – really have to mentally kick myself to do things. Am halfway thru making new curtains for the sitting room - two down, three to go. As I am working full time for the next two weeks, I have put that on hold but know I am going to have to push myself to do the others.
Our snow is not too bad at the moment but it looks like we will get more this afternoon. Providing I can get back into village tonight shan’t worry too much – better to be snowed in than snowed out!
Happy Birthday Lily. Did you get to work today or is the snow not too bad? We have had it really heavy here in rural 'Ampshire, about 6 inches in places. I went out for a nice walk which was quite exhausting after a while and walked to my Drs appt to get a few things checked out. He had to let me rest for a bit before checking my BP, which is on the rise again with all this hormone stuff. Hope you have a good day whatever you’ve been up to. I’ve tried to track down the comments/thread about the work stuff but, with the new look, I can’t find it - sorry. I thought it was under ‘being bullied at work’ but that’s a lot older. If I do come across it I’ll let you know.
I’m not at work today and my 2 D’s have got the day off college as can’t get to them so we’ll be off for another walk this afternoon and then see what happens tonight to see if we can all go to our respective places tomorrow. OH made it to work OK once he was on the main roads but if it freezes tonight it will be a bit tricky in the morning. I’ve had my complementary therapy session cancelled today, boo hoo, due to the bad weather, let’s hope it can be done next week, I really need some relaxation and de-stressing!
Julia - take it easy with the full time work, you could get tired as Lorraine has said, especially having just finished rads.
Lorraine - hope you are keeping your spirits up - you sound as if you are but also that you’ve got a few things going on. Remember we’re here to help! BTW I’ve got bone mets in hip and a small one on spine. These were dx in April last year after 4 and a half years of no problems after primary dx. Think we’re having similar treatments with bisphos and hormones. I ache quite a bit and get worried but have decided it’s probably the total lack of oestrogen in my body causing it. It’s interesting to see on other threads how long it takes to develop these aches and I’ve only been on Arimidex for 6 and a bit weeks after changing from Femara and being off that for a while in between. I will wait to see when my next CT scan is to see if there’s any other, more sinister, meanings to them all.
Lisa, Angie, Bev - hope you are all well and enjoying (?) the snow.
Take care all
Nicky x
Happy Birthday Lily! I guess you will probably be home today due to the weather!
I am feeling really sorry for myself (just for a change) I must have caught a bug from somewhere ([probably due to being back at work) and have been in bed all weekend apart from running to the loo to throw up and I am feeling really weak again so cheesed off as things were getting so much better. I also had tickets to take my mum to the ballet yesterday to see the Nutcracker and obviously couldn’t do it but thankfully a friend took her instead so at least she didn’t miss out. The awful thing was I changed my tamoxifen on Sat from one brand to the Nolvadex D and at first thought it may have been that but feel sure now that it was a bug as so far I have not had the hot flushes (how could you in this weather?) or the extreme chill I was feeling on the other brand so fingers crossed this will be better. My poor tummy feels very delicate thought just like the old days ughhh! So I just hope it goes quickly.
Glad to hear your return to work is going well Lily but try to stage it as I think I have tried to do too much over the last couple of weeks in order to resume normal life again and now have a taken a few steps back.
Nicky enjoy your treatments you deserve them!
Sorry feeling too grotty to stay for too long today my sofa is calling again (another ughhhhh!)
Be back soon and hope you are all good.
Lisa your photo looks great! I must try to work out how to put a pic in there as I agree with Lily the grey shadow is horrible!
