hi everyone, still having problems with site, tried changing pic on last message to angie, thought balloons were not appropriate but it didnt work, anyone know why?
hope the rest of you are behaving yourselves, speak to you all later x
Oh Angie what can we say words cannot express the feelings of sadness for you going through this and the support we want to be able to give to you. You are a tough cookie and need to call upon all your reserves to deal with this bloody unfair situation. My thoughts are with you and your family and if there is anything we can do research etc then please let us know how to help. Thinking of you and sending as many positive vibes as possible.
all my love Bevy x
Angie, know you probably have a lot to deal with at moment but just wanted to know that we are all thinking of us and understand you might not want to post at mo! Here when you want to vent and talk xx
i too am so sorry to hear about your recent discovery, you must be feeling so low, i hope and pray for you and your family that you will be given the strength to fight like you have always done. i think it is probably part of the disease we all dread, but nowadays there is probably so much they can do. at the moment you need the love and support of all those close to you, and please dont be tempted to isolate yourself. you are in my thoughts im giving you a big hug, i hope you can imagine all of our healing thoughts coming your way., sometimes it doesnt matter how many people are around you can still feel alone, please dont hide how you feel, sharing is what gets us through this.
i know you may not believe in god at this present moment, but i do and im asking him to take care of you, and give you comfort and if possible healing. forgive me if i offend you by saying this.
love and prayers lorraine x
i hope ive managed to change my picture to a bunch of flowers for you x
Lovely Angie: What terrible news, you must be devastated. Just as it seemed we were all moving on to something vaguely resembling normal. This really is a b*****d s****y disease - fill in the stars!!
As the girls have said, we are all with you and Tommy and will support you both in any way we can.
I know you would say – information is all – so no doubt you will be doing your research, and, as Lily says, get a second or even a third opinion to make absolutely sure of where you are going.
Take good care of yourself.
Love and hugs
I am sorry to read of your diagnosis. As well as the support you are receiving from your fellow forum users you may find the Secondary resources pack helpful. It can be found following this link:-
Also if you If you feel you need to talk to someone in confidence then please give the helpline a call, the staff here are all either breast care nurses or people who have personal experience of breast care issues. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
I hope this is of some help to you.
Sam (BCC Facilitator)
Oh my God Angie. I am so so sorry and sad to hear what's happened. You must be in a truly scary place right now and I do know how you must be feeling. You will get some good info and support from the secondaries forum as there are several ladies on there with brain mets. From what I've read, and I'm sure you have, it seems like rads definitely help and if chemo is needed the rads help the chemo do it's job. I guess you don't know everything just yet about what treatment you will get but I hope it's sorted quickly and you don't have any more problems before you start rads, steroids will help even though you won't want to be on them.
Thinking of you and Tommy and will be giving you all the support I can.
Take care hun
God, dont know what to say I havent stopped crying since I read your post Angie and just want you to know Im thinking of you and if you need anything at all you know where we are - Im so sorry you collapsed to must have been very scary and hope you havent got any pain. I hope the meeting with Onc gives you more answers about the parp trial.
p.s. Lily hope you had nice birthday
Dear Angie I am totally numbed by your news. I can't believe it could be so soon, so unfair, so undeserved, so b....y c..p disease. I am struggling to believe it can be happening. You know we are all here with you, all the way as always. I know the onc will have a plan to fight it and hope you can get on the trial you mentioned. I do not know a lot about PARP, but will read up about it now. If I can help in any way with my books or surfing, please say as I would like to help if I can. You are such a strong person and I know once you get to grips with it, you will be fighting it with all your might. I know brain mets are more unusual so you could maybe think about getting a second opinion, if you are not already in a top unit. I really feel like dissolving on the floor but I am determined to stand by your side through this and help in any way I can. We are all with you, always. Love to you and Tommy x x
Thank you everyone else for your kind wishes and I know you will understand if I just want to think about Angie right now.
We've not communicated before, but I've often enjoyed reading your posts. I'm so sorry to hear you have brain mets - my very best wishes to you!
What a week this has been. I'm sorry to say that I'll now be joining those of you in the secondaries area as I collapsed over the weekend and it turns out I've got brain mets. I can;t even believe I'm saying that. Seeing the onc on Thursday and asking loads of questions about the parp trial as that will hopefully offer some relief and maybe even a cure.
So if it's lily's birthday today then happy birthday, don't collapse or anything mad.
I'll be having brain rads next which we hope will work. My Poor Ma is a wreck which lets face it would would be wouldn't you. I'm not sure I can face causing anymore suffering. I'm back on the bastard steroids too but I'll talk to the other girls with brain mets in a moment.
TRIED SENDING YOU A PIC OF SOME BALLOONS BUT I THINK YOU STILL GETTING TEDDY AND FLOWERS ARNT YOU?
HAPPY BIRTHDAY LILY
You are very special
And you deserve the best
I wish you a wonderful life
Filled with love and happiness
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!
love Bev x
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
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!
Hope everyone is OK and have an enjoyable week.
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.
take care x
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
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.
hope your having a good weekend.
all you other lovely ladies, hope your having a knees up this weekend. you deserve it.
take care x
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.
hi there everyone
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?
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
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!
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
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.
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
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
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.
No doubt we will get used to this!
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!
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.
Talk more sooooooon
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
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!
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.
Just to say, Yes, I've found where we are but with work and finding my way around here this will be a very short post. I'm sure we will get used to it but a bit strange for now. Overall everything is OK with me just been a bit busy so will reply/post a more meaningful post later today when I can get on the PC for longer!
Take care buddies
Snap. The one good thing is the profiles - put my horrid pic on but struggle to find my way around totally and when you go to discussions you cant see all of them so cant just offer support when you know people want it.
Lily I havent ben private messaging much but I am sure that they wouldnt display them so your secrets are safe!!!!!!!
oooh I hate this new site, all the things I liked about the old one are gone. I can't find private messages yet and now worried that all the whispers have gone public. I can't even see anywhere to edit posts if you wanted to. Can you bookmark? The anti-pink ladies will hate this colour! Most of all I hate that they print the last message up so now end up reading things I wouldn't have before. Must stop moaning!
I have been rushing around trying to see all the people who have supported me over the last 10 months, as back at work this week. The dog will think I have left the country with just the postman to look out for and attack!!LOL. He sounds like a rottweiler when he sees that postbag. No idea why postmen upset dogs so much.
Bev I am still freezing, 3 jumpers on tonight and heating up to full blast. They say chemo can affect yout thyroid so might ask when I see the onc on Thursday. Had bloods on Monday and seem to be getting more jumpy about needles these days.
Will finish her as I am floundering, due to this new layout.
phew had a bit of trouble finding you all so I typed in Lily and managed to track where you all were.
Lily the dress fitting sounded wonderful and you enjoy having your mummy moment! personally I think girls are more hard work as it has always been our daughter who has caused all my grey hairs and she too, like your son, damaged a growth plate but in her arm and we were going back and forth for years for hospital visits she started off causing more concern as was a prem baby being 4lb every family has to have one (not prem baby but one that causes more work!)
I haven't been able to swap to the Nolvadex yet as awaiting prescription but I shall be glad to as I get so cold not only during the night but during day too, it is either that or boiling which is so difficult to deal with. Being hot I can take things off but being freezing is really unpleasant just like the chemo days. Although feel a bit worried about the possible mood swings after reading your post Angie it could be that you are feeling so run down with a cold and moving it all sounds a bit much to cope with, wishing you happiness in your new home.
Lorraine I know the feeling I too would really like to drop some of the weight I have gained but the onc cheerily said to me "you'll have trouble being on Tamoxifen" really fills you with enthusiasm to try so I polished off the remaining chocs I had in the house.
Lily I now work in retail in a monsoon with a great bunch of girls who have been really supportive. I actually worked today without the wig but was very aware of how cropped my hair is but at least I have a full covering now. I didn't seem to frighten the customers away and tend to wear the wig more as a hat to keep me warm.
hello to everyone else and I will try to find you all again soon.
love Bev x
Lorraine now I am going to have a job to stop laughing again, with your quote ' because I didn't have a cake after'. You are a woman after my own heart. No bakery would be safe with us two about!! LOL. You just enjoy yourself because you deserve it. My son is the opposite to tramp stage and I had to buy him his own straighteners and heat protecting cream!! He is a real clothes horse and loves fashion. I agree though about how far we have come, dieting was the last of our worries a while back x.
Lisa yes I am watching the skating too. Laughed my head off when Todd lost it and sailed off. Hope he is as bad every week. LOL. Son is a toughie but a big hugger too, which is nice. Can't wait for the next wedding dress expedition, such fun. Did you see that film,where that girl kept pretending to be getting married and trying dresses on everywhere. I cans ee why now.
Have good week everyone. I am off for blood tests before my post rads check with the onc. I have so got out of needles already!!
Bev diet going okay but not really dieting trying to cut out crap which is hard for me as love my booze and chocolate and nuts, all things I shouldnt have.
Lily, boy your son sounds like a tough cookie! My throat loads better, thought I was going to be down and out but think I was maybe starting to come round before got the pills - checked and can have a few so had some wine tonight which makes me eat! Weigh in day tomorrow.
Lily wedding dresses sound fab, its sooo nice looking for them, I hated looking for mine due to being overweight but ended up finding a lovely shop who wouldnt let me try any dresses on unless I tried one on she had in hand first, didnt like it even though said could change materials etc. god it made me drop a stone when tried it on and she was sooooo right, was perfect - albeith expensive - three of my friends went to her afterwards!!!!
Anyone watching dancing on ice?? Back to work tomorrow
poor lily, your body just isnt used to lettuce leaves is it? nor mine. i just cant seem to get my head around the slimming thing. and when my back was bad and i blamed my weight to the onc, he just sits there saying tamoxifen, i really dont think its that so much as the junk im still consuming. i do eat healthilyt , but i like the naughties as well. somebody laughed the other day. i said id had a cornish pastie for lunch, and they replied "thought you were dieting" i just said i thought i was good because i didnt have cream cake after it. the trouble is they have a bakery at our hospital. otherwise i never touch pastry.
talking about boys, my youngest (13) is going through the tramp stage, i cannot get him to bath or brush his teeth, i thought it would get better when girls came on the scene, but theyre about and he still wont go near water. do you think hed notice if i give him a bed bath in the night? my other two were handfuls but they were always clean, just goes to show men are all a pain in the butt.
hope everyone else has had a peaceful weekend, and felt reasonably well. cant believe weve come so far, brilliant isnt it.
well I am floating along on a cloud today after going with my daughter to look at wedding dresses. Her friend burst into tears as soon as she walked out in the first dress but surprisingly it did not take me that way. I just kept thinking I have seen this moment and looked more like a chipmonk with a silly grin on my face.LOL. We just tried 2 local wedding shops but have already seen one in each shop that she would be very happy with. She looked absolutely beautiful, so much so that in the second shop, another bride insisted on trying the same dress and was going to buy it there and then. Apparently it takes 4 months for a dress to arrive when ordered, so anyone who needs one quicker has to choose one from the shop stock and have it altered as necessary. We have tons of time so plan to visit every shop in the county and have lots of fun trying them. I know I am biased but she looked absolutely perfect. I can't tell you how this is making my heart sing and forget everything else. Sorry had a real mummy moment there.
Bev, I am so pleased it sounds like things are getting back on track for you and that the holiday was just what you needed. Fingers crossed that the nolvadex will be good for you too and get rid of those horrible flushes. What kind of work do you do? Have a lovely visit with your Mum and family.
Angie, take that stress out on the moving. Fake cold lol. I love moving house so just feel very excited for you. I think it will be good to be living in a house where you haven't spent years looking at the bathroom tiles on chemo!! I would like to move but we will probably continue to try to do up this house as we have not done a great deal for some time. You know we have to let docs know for 6 months after finishing chemo, so it must take quite a while to completely recover inside and out. I have been trying to eat more salad and fruit but my stomach is really not happy and it started some of my ols side effects off too. Maybe we still need to eat for getting better and not for dropping a dress size. OR it could be another excuse for me to delay the diet!!LOL. Do you move next week? Big hug for your Nan x.
Lisa, I don't know about alcohol either as my son is partial to a few beers when out at friends, so said don't chance it. His tonsils are still absolutely covered in pus and disgustingly yellow. I think he may have to go back to see the doc as they were concerned about glandular fever because of his age. I don't think he has it as not tired enough. I had it when I was 18 and so did my eldest at the same age and we could not even walk up the stairs without stopping half way for ages. Mind you he is a toughy when it comes to illness and amazed the docs when he caught pneumonia as they said most would be in ITU as so severe. He was playing computer games in bed. That was a day, we went to the GP, then sent to A & E who ignored us for ages. Then when they looked at his x rays, we had to have a blue light ambulance to another hospital which specialises in children's chest conditions. I had gone in my car and was in such a panic, I overtook the ambulance on the way and arrived first!! Then 6 weeks later he broke his ankle as well as his leg in 3 places, right through his growth plate. We were taking him for check ups for years. I always say boys should come with warnings. Lorraine how did you survive 3 boys and how is your youngest's hand now? Were all yours daredevils too?
Nicky hope the house is still standing when you get back tonight and that you enjoyed the film. Did she manage to get all the cooking done herself? I have what my friend calls ' a house of trousers' meaning all males except me now and could not have a decent conversation about wedding dresses at all when I got back all hyper and wanting to let it all out!! Start getting yourself prepared for a quieter house when they go to uni, it is so strange when you are used to girls chatting and sharing news. I have to chat about man utd to get my son in a conversation!
Well hope there are no floods your way
hope your all feeling ok, and having a chilled out weekend, weathers been good here in the midlands, have a good sunday !
take care x
Hiya Lily, my throat is much better thanks, but gaggin for my weight watchers wine as I snuggle up tonight with Mamma Mia, but not sure if allowed on penicillian!!!! Surgery is a lot to deal with so going to meet sugeon and also be referred to either Newcastle or Manchester, its the nearest place that does them to me out here in far flung Cumbria!!!!
Angie - you sound really run down, make sure you get a good rest once you get in your new home - I must admit to havign the odd pains and niggles on radium side too mind x
Bev, glad you enjoyed work and thanks for the advice. Im also not sleeping much at moment, which Im assuming is down to Arimidexx
Nicky - hope you are okay x
Oh forgot to say, whatever force of nature's picking on my Nan should get the full wrath of my mood swings. She is stable now which is great but her ward's now been closed with Norovirus.... Hospitals, really not a good place for an ill person are they.
Get well soon Nana, and get out of there soon Nana.
sniffle, body has decided to fake a cold to get me out of moving... it won't work. I say fake, it could be a real one but last time I move I suspiciously got a cold too.
I also seem to be reliving chemo symptoms as I lose the weight, it's very odd. I know the body stores the toxins but here's the brief list of effects right now.
occasional small nose bleeds (probably related to being blocked up with fake cold and low iron levels), painful veins, stabbing pains in armpit (same side as radio), bleeding gums when brushing teeth, cold sores and cracked lips.
Gosh what a pretty picture. So hard to say what's causing what actually. I know a certain amount will be the weight loss and toxins and stress but can Tamoxifen mess you up like that?
I've only been on the nolvadex for a couple of weeks and so far no flushes but my moods aren't pretty.
Have a great weekend Ladies. I'm looking forward to getting my new keys tomorrow.
so glad to hear the big meet up went well that must have been lovely for you both Lily and Nicky. Lisa is really sounds as if you are having a prolonged journey to deal with and I am thinking of you but do your research and then you feel more in control of what is happening to you as you will have a better understanding good luck.
Thanks for the advice on the switch to Nolvadex from the Tamoxifen I am on with all the horrible side effects of basically not being able to sleep for longer than a couple of hours at a time. The GP has agreed to the change in medication so I can pick up the new ones next week I will report back.
Well first week of being back at work although I have done reduced hours and making the time up with holiday entitlement so I do not lose out financially. It felt so good to be doing normal things again.
Well can't be too long today as I have my mum staying this week and we are just off to visit my brother and sister in law. Will catch up in more detail later.
Angie good luck with the move but be careful and don't over do it!!
have a great weekend everyone.
love Bev x
op sounds like a lot doesn't it. I think I would have it done, especially if young like you. You could always ask to be referred if you prefer a different recon. They have meetings down here where you can go and look at volunteer's recons and ask them questions. There must be a big centre for recon in your area. You are so brave, already having more surgery than most of us. There is a lot to be said for ahving a surgeon you like though. How is your throat now?
I think it must be easier to decide if you have it all done at the same time but harder when you have got better and think about starting again. You know we will support you through it as much as we can in cyber space. If it would make you feel better about yourself, then you should go for it.
I can't believe Ulrika won!!!!! Whata fix, little Verne should have won.Going to bed now.
Lorraine good luck with the scan.
Angie - im sure its the stress o moving rather than the tamoxifen, good look with the moving too
Nicky - sounds like you had a lovely time. Yep its my birthday on Friday, same day I found the lump, and similar to Lily have a mamogram same time as found out results - wierd, didnt think Id make the year mark and other hand scared that had a year already!
Lily - glad you got a holiday booked - where you off to? Enjoy looking at the wedding dresses.
Well, seen the nurse today about recon, the only one they do in my area is latissimus dorsi flap as we dont have a plastic surgeon. I feel comfie with the surgeon and my nurse but still weighing up options. I know they wouldnt look fab but its something to put in bra without worrying about top falling down and having no cleavage. They would use back muscle and fat (plenty of that) and bring it round and put an expander implant in thats more naturl and then pump away then take port out after few months then start again on other side!!! Euuughh, hard pushed to go for it but want something done. She thought that you couldnt use your tummy for a double recon but I think others have had it on here - so more research, got a huge tummy but getting rid of it isnt my main priority. Enough waffle
p.s. Lily - Celeb Big Brother results?!?!?!?
well I don't know about moving on, I have just received another hospital appointment in the post, so that is 3 now! This one is not for months though and is for a mammo on the anniversary of my first operation. Is anyone else getting all these? I have not had any from the trial yet, so hope I don't have even more coming!! So it is full blood tests next week, the oncologist on my first day back at work and the surgeon on my 3rd day back at work. So far work have been absolutely fine about them. It is ironic that they have all come up just as I am going back to 'normal'. I guess normal has changed now! Anyway I had a very exciting day, booking a holiday for the summer and managed to wheeler dealer a good deal by getting Thomas Cook and Thompsons to go head to head, on a rainy day with no-one else in the shop. At least it gives me a reason to go back to work - to pay for it!!! In the morning it is wedding dress shopping and I am fair bursting to look at all the lovely dresses and see my daughter as a bride. She has a cold unfortunately but still keen to go. Victor is limping wounded now, and goes around very carefully but he is getting terrible cramps in his calf and foot.
Lorraine loved the story, made me smile. When will you hear about the scan? Hope they don't keep you wondering too long and that it is the news we all wish for you. Angie - very interesting idea about women and will look that up. The wedding venue looked lovely, I did eventually remember to look at it! Good luck with the more mundane job of packing boxes and wishing you both health and happiness in your new home. Lisa, my son is on the same tablets as you, from the sound of it. The 3 hours is a killer isn't it? His tonsils are yellow and the tablets don't seem to be making much difference although in himself, he seems brighter. he went back to school for one day and then was ill again this morning. Hope you are not as bad as him - miserable illness to have.
Nicky - oh poor you on the M25, how far extra did you go? I feel bad you having such a journey. Can we do a deal and I will donate hair but you have to take bulges as well!!! (Lorraine I think it is just us 2 on the cakes you know!) Thank you for your kind comments and next time you come, I can show you the clip of you on tv another 3 times!!! LOL. I hope you enjoy the film and that the house is not over run when you return. I was reading about trials showing that walking 3 - 5 miles a week is beneficial in Bc. I did start walking but seem to have stopped without realising. I am feeling a bit stiff at times so not sure if it is lack of exercise or the nolvadex.
Julia how did you get on today? Hope they have a good plan for you now that involves as little intervention as possible with great results. You must have almost finished rads now, are you on fire?? Hope not. Bev hope you are still feeling good from the holiday. I think you spurred me into action.
glad nicky and lily had a great time. been for scan today, feeling ok about it, but then again i felt ok before, and what a suprise that was. but what ever will be, i will face, but it would be nice to have good news.
my friend made me laugh today, her grandaughter whos 3 was constipated, and shed been trying to go on the downstairs loo without much success, so she wandered up to the one upstairs. her mum asked what she was doing and she said
"the toilet downstairs isnt working" bless her. if only treating constipation was that easy.
hope you all have a fun and relaxing weekend!