Starting Chemo in Nov 2011

[Lulu34]

Congratulations Liz that's lovely news.

Lxxx

[gill13]

Uh oh, same old problem, typed out a message, typed in the word verification, post disappears! Luckily it was just a short one, it was a huge congratulations to Liz on her new grand-daughter 🙂 Fab news and a beautiful name xxxx

[Guest user]

Very late Evening Ladies,

Just to let you know that my third grand-daughter was born earlier this evening 13 days early. All of my grand-daughters have been born on a Monday - the other two having their birthdays on the 6th!

She was 7lb 3oz and her name is Lucy Grace (my DiL's Gran's name ) Evie. It was an extremely quick labour and big brother is delighted.

I have already booked my flight for next Tuesday (as having Herceptin on Monday) and back home on Thursday.

I can say from the photo son emailed me she definitely has more hair on the side of her head than I have!

Take care all, love, Liz, xx

[gill13]

Hi, hope everyone is having a good bank holiday, its raining here in N Wales, nothing new, we have Prom Day on May bank holiday, the road is closed off, fun fair, amusements all the usual, Kitty who was on X Factor last year was performing today, but we didn't bother to stay to watch her, I found her too annoying on X factor. I've just spent a small fortune on a couple of rides and some sweets.
I laughed at catherine posting 22 times too, the 1st time i posted it went on 3 times, i think you have to be patient.
I've feeling fine since sat night (it was defo took much drink!!) and I'm generally quite happy at the moment with the way things are, moral, stay off the booze, esp when alone! 🙂
Kym - i've been meaning to say i like your pic, is that your work? the HH wasn't a local production, and was only on for 4 days, so i'm guessing travelling around, it was different to the HH proms which we've seen on tv, not as big a production, but still good, they had some 3d effects too, which were ok
Sue - hope you enjoy Wizard of Oz, my little one has bought herself a mini dvd player with her birthday money, its great, shes watching it now and theres no citv on....bliss
Liz - hope you start feeling better again soon, you think its going to be all onwards and upwards then you get a blip, as Kym called it
Gill xx

[Guest user]

Morning All,
I had several unsuccessful attempts to post on Friday and on Saturday, although I was logged on it was not registered as such - don't really know why so I had a break yesterday.
Gail - great news about your liver.
Lisa - well done on the op and recovery.
Gill - hope your feeling better now, maybe the last 8 months just got to you and it was time for a release.
Last week I felt as if I was back doing chemo se and my joined-up thinking has gone again - hope this week is better.
Love and hugs to all.
Take care, Liz, x

[Guest user]

Hello
Gill, sorry to hear you had a bad night. Like others say, you are allowed to feel sorry for yourself from time to time and maybe having a good cry has been cathartic. Living alone and being 1-boobed can both be seen as temporary conditions (although the scar will always be there).
Still trying to decide what to do for the bank holiday. If it wasn't so cold, we would go cycling, but 4 of my fingers went numb just going for a walk yesterday - when cycling you can't put your golved-hands in your pockets for warmth. Amy has expressed a desire to watch Wizard of Oz, so after a spot of grocery shopping, we may just have a movie afternoon.
LOL at the lady posting 22 times. I hope the gremlins soon sort themselves out. I find connecting to the site a bit flaky (still), but I got in first time today, so who can tell.Sue

[Guest user]

Stoopid thing. Now it's posted twice. Still, could be worse, Catherine on Dec thread managed to post hers 22 times.

[Guest user]

Awwww Gill, sorry you had a rough night last night 😞 , but like the others have said, you're allowed a blip every once in a while. When you think what shit you've been through in the last few months, none of it asked for, it's hardly surprising. And like Lulu said, you've no need to be 1 boobed forever. You're NOT alone, we're all still here! And on FB.
Glad to hear you enjoyed Horrible Histories. I was gonna say, yes, great rhyme, but what order were the wives, haha? Are the actors local, or the actors from the programme? I've found out there's a family day with HH in Todmorden on July 28th - will just have to persuade small son now that he really DOES want to see it!! (actually, small son, Louis, is almost as tall as me, with size 9 feet!) xxx
REALLY not liking this site much yet at all. What does anyone else think? It's going to take some getting used to!
Kym xx

[Guest user]

Awwww Gill, sorry you had a rough night last night 😞 , but like the others have said, you're allowed a blip every once in a while. When you think what shit you've been through in the last few months, none of it asked for, it's hardly surprising. And like Lulu said, you've no need to be 1 boobed forever. You're NOT alone, we're all still here! And on FB.
Glad to hear you enjoyed Horrible Histories. I was gonna say, yes, great rhyme, but what order were the wives, haha? Are the actors local, or the actors from the programme? I've found out there's a family day with HH in Todmorden on July 28th - will just have to persuade small son now that he really DOES want to see it!! (actually, small son, Louis, is almost as tall as me, with size 9 feet!) xxx
REALLY not liking this site much yet at all. What does anyone else think? It's going to take some getting used to!
Kym xx

[gill13]

Thanks Teresa and Lulu, hugs gratefully received 🙂 and Teresa, I laughed at your statement "but you are 1 boobed". xx

[Lulu34]

Gill I'm sending you big hugs hunny.... We are all allowed to feel sad and sorry for ourselves after all the shit we have been through so don't beat yourself up....

We are all here for you and understand what your going through.... As for being one boobed that doesn't need to be a permanent situation either hunny.

Love and huggles xxxx

[keepthefaith]

Gill! You are NOT lonely, as you have us! But you are 1-boobed, which is a bit of a b***** it's true, but rest assured you're not alone in that either! Glad you are not so sad today. Sending you lots of love and hugs xxx

[keepthefaith]

Gill! You are NOT lonely, as you have us! But you are 1-boobed, which is a bit of a b***** it's true, but rest assured you're not alone in that either! Glad you are not so sad today. Sending you lots of love and hugs xxx

[gill13]

I'm such a wally, I'd made plans to go out last night with a friend, but her daughter had been ill so she cancelled. I was home alone and had a few drinks, I know, by myself!! Anyway, I went to bed feeling bit tipsy, and ended up bawling! I couldn't stop crying, and I don't even know what started me off, well rubbing cream into mx area probably did it. I just felt so alone and thought this is it for me now, sad, lonely and 1 boobed!! Glad to say, i woke up feeling ok, that'll teach me to drink alone. Not sure if its the site playing up which is making things quiet on here, I'm sure it will be better in long run, I just hope everyone hasn't disappeared from this thread xxx

[Guest user]

Having problems posting just now, so trying a quick update. Lulu - I've been told I'll see the surgeon again about a month after rads, so hoping he'll be happy to operate by then.

[Guest user]

Having problems posting just now, so trying a quick update. Lulu - I've been told I'll see the surgeon again about a month after rads, so hoping he'll be happy to operate by then.

[Lulu34]

Wow Lisa I'm well impressed.... Hope you go from strength to strength

Gill I have a little palette of eye shadow and eye brow make I got at the look good feel better and an eye brow pencil... I draw them in sometimes but I still have some eyebrows just not as full as normal... When I wear my glasses my eyebrows aren't so noticeable anyway.... But to me thy are patchy and fine but others say they look normal but not sure if they are just being kind.

Amys mum glad your rads are going ok... Hope your skin continues to hold up.

Kym I'm hoping that the messages can be transferred over at some point.... Or even if they give us a link to the old forum so we coud back and save the things we cherished.

Take care ladies xxxx

[gill13]

Gail - Fab news about your liver, so relieved for you, do they need to do anything about the leision?
Lisa - glad to hear all went as it should have done, it took me a while before i could sleep on my left side again, just don't push yourself, take it easy, in a way good you were home so quick but very scary too.
Lulu - do you draw your eyebrows in? I've started filling in the gaps with my eyeliner, i went to town on friday to specifically buy an eyebrow pencil, i ended up spending £16 on various bits and bobs, and didn't get the eyebrow pencil
Weme - hope your skin gets better soon, you had a lot of trouble before didn't you
Amysmum - my skin where i had rads is quite brown now too, its beginning to peel a bit too, not too bad though, i also had a little area on my neck where i'd obviously been zapped, again its one of those thing which you're aware of but others wouldn't notice, but things must have been out of line at some point, because my skin has changed in this one other area too.
Kym - Horrible histories was really good, we saw the terrible tudors, they had the audience joining in, we learnt a song with actions to remember what happenred to Henry IIIV wives, "Divorced, beheaded, died. Dovorced, beheaded, survived!" there you go. i learned something, don't remember the names of all the wives though 🙂
Have you ladies had to put a new profile pic on?

[Guest user]

Wow, posting already Lisa, you only had op yesterday - I'm well impressed! I cant believe you didn't even stay in one night - and you came home without drains too!! AND doing excerises already. Flippin eck, go girl!!
Weme, your rad area sounds ever so sore. I really hope it starts getting better for you soon. Are you fair skinned?
Amysmum, Glad to hear that your skin is bearing up under the rads. Someone on here (can't remember who it was) was told by the rads people that people who expect to burn don't, and others they think won't - will. I'm hoping I don't, but I have very fair skin and always wear at least factor 30 when on holiday. I hope you enjoy your reflexology session next week. I've been for 5 lots, and its very nice, but not very relaxing as the lady who does it yatters the whole time, still, can't complain, its free 🙂
Lulu, its a pain isn't it - I've lost all my messages. But its harder for you to lose those extra special messages that were sent from ladies who are no longer with us. Could you perhaps have a word with someone (nurse, moderator?) about them trying to retrieve them for you? I hope you are doing well - have you started to get any energy back yet?
Love Kym xxx

[Guest user]

Wow, posting already Lisa, you only had op yesterday - I'm well impressed! I cant believe you didn't even stay in one night - and you came home without drains too!! AND doing excerises already. Flippin eck, go girl!!
Weme, your rad area sounds ever so sore. I really hope it starts getting better for you soon. Are you fair skinned?
Amysmum, Glad to hear that your skin is bearing up under the rads. Someone on here (can't remember who it was) was told by the rads people that people who expect to burn don't, and others they think won't - will. I'm hoping I don't, but I have very fair skin and always wear at least factor 30 when on holiday. I hope you enjoy your reflexology session next week. I've been for 5 lots, and its very nice, but not very relaxing as the lady who does it yatters the whole time, still, can't complain, its free 🙂
Lulu, its a pain isn't it - I've lost all my messages. But its harder for you to lose those extra special messages that were sent from ladies who are no longer with us. Could you perhaps have a word with someone (nurse, moderator?) about them trying to retrieve them for you? I hope you are doing well - have you started to get any energy back yet?
Love Kym xxx

[Guest user]

Oh good, at last I can actually post again. I could get on for a while, others were posting, but I didn't get the reply box. Just need to see if there is a way of marking a post as a favourite to save playing "hunt the November ladies".
Gail, that is great news about your liver.
Libralady, glad to here you are back home. I found rolling over or getting out of bed tricky for a few days after my op.
Weme, I hope your skin starts recovering soon.
Well, I have had 15 out of 25 rads so far and my skin is holding out better than I could have hoped. Rather than going red, I seem to have started going brown. I was originally advised not to wear a bra during rads and to let the air get to the area when I was home, but my reconstructed breast is definitely happier snuggled in something supportive so I am wearing a Primark crop top plus a hidden support t-shirt most of the time. I get Monday of (from the hospital), so may try to go out somewhere if the weather is nice enough.
Just have to re-learn the art of sleeping and I will be a happier bunny. I have reflexology booked for Tuesday week and hope that a complementary therapy will help me sleep.

[Libralady]

Hi ladies

Home now, mastectomy and full axilla node clearance done. A tad sore from shoulder to waist area - kinds of feels like someone had really whacked me on my side - almost like ive got broken ribs. Couldnt turn myself around in bed last night so was stuck in the same position all night . Done my first set of exercises this morning.
No drains or anything. I was first on the list - I was in the anasthetic room at 08:50, op took 2.5 hours and I was discharged at 2:30pm - they dont waste no time in these places anymore. Im wearing my softie at the moment in my Genie Bra (Brilliant thing).
Hope everyone is ok. Trying to navigate my way around the new forum, besides a few teething probs, its looking ok.

[weme]

Hi All

Good to see the forum back up again.  I've been to work yesterday and today I had my last rad so I guess that means I have finished active teatment - yeah!    I hope you are all doing well, it has been difficult to find latest posts but hopefully they will sort out the forums soon.  My toe seems to have got better (no sign of the nail dropping off any more) but now I have a problem with my armpit where the rads have gone, it's taken a few layers of skin off and now is raw and weeping, they've tried to fix it the last couple of times I've gone by putting a second skin on, but it has finally started weeping now so they have put a soft dressing on and given me more to replace it with but being in a difficult area means they may not stay on.  Got an appointment with my nurse at gps on Tuesday to see what they think as the radiologist told me to do that. 

I hope you all have a great weekend, lets hope for some nice weather as it's a long one.

Weme

[Lulu34]

Gail thats fab news about your scan.... hope the rads are going ok.... any news about surgery yet?
Kym glad your feeling better now you have had your transfusion.
Gill i have no bottom lashes on either side now and about 8 on top of right eye and 12 on the left.... i have wee tiny ones strting to grow underneath they are about 1mm long... my eyebrows seem to have stopped falling out and are very sparse and going a bit mental pointing all the wrong direction.... my arm hairs all fell out 10 weeks after my last chemo.... not sure what that was all about!.
lisa good luck with your op.
wish we had longer to access the old site or that there was someway we could go back as all my saved messages are on there and i cant get them and really want to keep the ones from hazel, rhian and tina who are no longer with us. really gutted i cant get to them 😞

love and hugs lulu xxx

[Guest user]

Gail, that is BRILLIANT news!! You must be so relieved!! and like you say one less thing to worry about!

And Gill, leave your last eyelash alone - the thought of you yanking at it makes my eyes water! And how was Horrible Histories? I wish it was near here somewhere, will have to check, just thought it was in London. We've always watched it, yes, 'we'. Its hilarious and I wish we'd had something like that when I was at school coz I'm sure I would have learned more. Love it all, especially Stupid Deaths, Come Dine with Me and Shouty Man! is it as good 'in the flesh'?

I had my blood transfusion on Wednesday. I felt definately brighter in the evening, but now I feel just as tired again, and my lower back pain is kicking in, like it did last time. Hopefully it'll all disappear again in a few days. My burning toes and fingers have been much worse this time too, especially my feet. Hopefully, that'll all subside too. Its the falling off nails I'm dreading 😞

Are you feeling any better Liz? and how are you Weme? and Paula? its been a few weeks since surgery, how is the movement in your arms? Are you having radiotherapy? Paula, I think all the PMs have been removed. Would you please send me your phone number again?

Kym xx

[Guest user]

Gill - The site was down the last couple of times I tried to post anything. I have fairly sparse eyebrows, although starting to come back a bit I think. You can't really see any eyelashes unless you look closely but I do have several little stubs.
I got the MRI results back yesterday. Looks like the lesion on my liver is benign, it's called a hemangioma, so one less thing to worry about.






























b

[gill13]

i'm sure there must have been something on here to tell us the forum pages were changing, but i obviously missed it. I'm sure we'll get used to it....But has there really been no one posting on our Nov page since my last post on monday? Hope everyone is keeping ok, i'm still miffed about my eyebrows and lashes, i have 1 bottom lash left on my left eye, i tried to pull it out, but it wouldn't come?? We're off to theatre in a bit to see The Horrible Histories (kids thing) I'll pop back later to check out the site again....... Gill x

[gill13]

i'm sure there must have been something on here to tell us the forum pages were changing, but i obviously missed it. I'm sure we'll get used to it....But has there really been no one posting on our Nov page since my last post on monday? Hope everyone is keeping ok, i'm still miffed about my eyebrows and lashes, i have 1 bottom lash left on my left eye, i tried to pull it out, but it wouldn't come?? We're off to theatre in a bit to see The Horrible Histories (kids thing) I'll pop back later to check out the site again....... Gill x

[gill13]

i'm sure there must have been something on here to tell us the forum pages were changing, but i obviously missed it. I'm sure we'll get used to it....But has there really been no one posting on our Nov page since my last post on monday? Hope everyone is keeping ok, i'm still miffed about my eyebrows and lashes, i have 1 bottom lash left on my left eye, i tried to pull it out, but it wouldn't come?? We're off to theatre in a bit to see The Horrible Histories (kids thing) I'll pop back later to check out the site again....... Gill x

[gill13]

thanks for chantals birthday wishes, she looked a momentarily confused at bedtime when i said see you when you're 7 🙂

Liz - its easy to do too much when you're feeling well, hope your aches and pains subside xx

[Guest user]

Evening Ladies,

I got 2 packs of Letrozole but I'm sure GP said it was to see how I got on with them so I'm hopeful of getting 6 month's supply next time. I feel that there are so many hospital appointments and check-ups that BC is always on my mind and I want to reduce the time taken up by it to a minimum and that includes having to phone for repeat prescriptions.

Still suffering the after-effects of chemo - very breathless today to add to the exhaustion and bone pain. I wonder, now, if I have overdone things building up my stamina over the last few weeks and now paying the price.

Lost all but one of my fingernails but new nails underneath. Like Gill was surprised for it to happen now when last Tax was mid-December. Hair growing steadily but quite slowly so congratulations to Theresa on haircut!

Kym: hope you are not suffering too much.

Gail: hope you get a good result from MRI.

Gill: good luck with the transfer and Happy Birthday to Chantal tomorrow.

Take care all, love, Liz, x

[gill13]

Hi Gail - we all know the waiting is the worst, and the not knowing when you'll get them doesn't really help. I'll keep everything crossed for you.
the se's are niggles more than anything, I can't really complain, well i did actually didn't I? I just didn't expect the nails so long after.
Gill x

[Guest user]

Teresa - As my boob's so swollen, it wasn't too comfortable before rads, but don't think it's any worse so far. I don't think you're mad going to the haidresser when your hair is coming in so quickly. I think it's another important milestone on the road to recover getting the first cut too. Hope it makes you feel more yourself.

Gill - It's horrible you're still having SEs so long after last chemo just when you should feel you've gotten away with hanging onto nails and hair should be coming back. Hope Chantal has a great birthday tomorrow. Good luck with getting your transfer; sounds promising.

I had the MRI for my liver today, so back to the dreaded waiting for results. Might get them at my rads weekly clinic review on Thursday, otherwise will have to wait till next week's review. Suppose it's understandable that they don't want to give them to you over the phone in case it's bad news.

[gill13]

Hi Ladies
sorry i've not been on for a bit, just catching up with whats been posted,
I'd also read about Gingerbud, and although i'd never actually seen any of her posts, I also felt so devastated, its so sad to hear of someone who has not made it and leaving behind such a young family, its heartbreaking 😞

On a positive Lulu - great news for your son, I'm sure you're so proud of him

Lizzie - i didn't get 2 packs of tamoxifen this time, they've told me to ask for 2 next time, hopefully thet'll allow it, maybe i should make an appointmebt with GP, and
Gail, you're rght about prescription costs, I do have them free here, but what about those of you in England, do you still have to pay if you're on long term medication?

Lisa - i've been having real achy legs too, i think for me it could be the tamoxifen, its worse when i first get out of bed in the morning, i feel like i'm 90 the way i hobble to the loo, then downstairs! Hope your rash has improved

Weme and Christine - sometime i wonder if we should ask about survival percentages, we want them to say 90%, but they don't, All I can say is that we all seem to be getting all the treatment available thrown at it and we're so lucky really.

Teresa - i've bought a 2nd hand stepping machine, i do feel my stamina is getting a bit better, when i 1st had it 10 steps and i was exhausted!

Kym - how are you doing? Hope this last one has been kinder to you, i very much doubt that it has, but at least no more of that horrible stuff!! Was it you who said chemo stays in your system for many months? Because i'm still getting some se's, my eyebrows have continued to shed, I thought i'd got away with them, but no, they're pretty thin now, and my nails have finally started to show signs that they're going to start shedding too. I'm not impressed, pah!!

On another happy note Chantal had a lovely 7th birthday party today, they made little models of unicorns / pegasus or dragons out of air-drying clay/dough, they all seemed to enjoy themselves, and now she can't wait for Tuesday for her actual birthday for round 2 of celebrations. Lots of cake eaten too 🙂

Work still going well, union lady is going to help with my transfer request, so my fingers and everything else will be crossed..sorry long post, catch up again soon xxx

[keepthefaith]

Hi all

Gail - glad rads going OK. I am quite sore, bra rubs so wearing support vest but only pop softie in when going out. Keeping on w the aloe vera!

Lisa I certainly had twinges in both boobs. My onc also said it is hormonal as your ovaries shutting down 😞

Christine good on ya! I so admire your faith, it is stronger than mine which is a bit pathetic at the moment.

Weme hows the tamox going?

I got an exercise bike / cross trainer on ebay the other day and have been doing 5 mins at a time here and there, finding it very good. Nicw to get the heart pumping for a change!

Am I mad? I am going to see my hairdresser on Friday! The hair is growing back thick and fast - it's not that long yet but all the wispy bits at the end are annoying me as they stick out at weird angles. I thought he might just be able to trim it all to same length - not exactly a cut!!

love to all
Teresa xx

[Guest user]

Lizzy - Good to hear you're getting your energy back. I seem to be getting mine back just in time for rads to wipe it out again.

Lisa - I think Lulu said a while back that chemo can cause pain in the good breast too as it's also killing healthy cells along with BC ones.

Pleasant - That's rotten you didn't get a decent break. And must be so frustrating having the broken machine with rads. It's bad enough having to go to the hospital every day without having problems.

Christine - That sounds like positive news about the nodes and it seems sometimes the chemo doesn't shrink tumours but still kills the cells within them so that seems good too. My unit told me not to look at the stats from the start, but maybe they'll be more willing to tell me about my chances after my Mx.

Weme - Good you've started the Tamoxifen. It's worth trying. If you already have hot flushes, it probably won't make them any worse. I think with the weight issue, it's more that it's harder to lose weight post-menopause. If you do have problems, might be worth trying to get a different brand as well. There's some info on other threads suggesting it's sometimes the fillers that cause the problems. Makes sense that you only take it for 5 years based on what Christine says about the risk of womb cancer increasing after 5 years.

Kym - Hope you're not feeling too bad just now.

I've had 3 rads so far and not too bad, except boob a bit more red and starting to feel a bit of irritation at base of throat.

[weme]

Hi Christine

He didn't say how high the risk of womb cancer is but it is surely lower than the risk of bc coming back or they wouldn't suggest taking them. I have a score of 3/8 but have been told 20% chance of working, I wonder how they work it out given we both had IBC to start with. I have spoken to my mum and sister about it and decided to give them a go so I have just taken the first one, let's hope the se's are small for all of us that need to take them.

I hope you all have a good weekend.

Weme

[3network3]

Teresa, you ask me how I feel about the 50% survival for 10 years, well the only worrying thing about the 50% is, that is the case if tratment is very effective, oops! It's not worse than I expected, I always had this funny feeling even before I knew it's IBC that I have a 50-50 possibility. I'm a Christian and a poorer prognosis makes me pray more and depend more on God, and the deliverance is more wonderful.

Good that rads are going well, "looking forward" to my ones, feel relieved that chemo and OP is behind me and think rads should be no bother in comparison, so I hope anyway.

Weme, my ER score is 4/8, they have just told me to take Tamoxifen, not given me the option. Today he said Tam could increase my survival by 11% which is very significant. I think if I were you I would take them and see how you feel when actually taking them as opposed to just think about it. You can stop them anytime, but at least you tried. I was told the risk of womb cancer increases if they are taken for more than five years, but how high is the risk, do you know?

Christine xx

[keepthefaith]

crossed posts Weme!! xx

[keepthefaith]

Hi Christine

Sounds like good news in the node department. My onc said to me the other day that node status more important than tumour shrinkage - so it is good that no traces of cancer in the nodes since the chemo, which has obviously got rid of it. So the cancer is HER+ve and Er+ve so you can have treatment to help prevent against recurrence. That is good. How are you feeling about all this? Is it better or worse than you had thought - I gather 50% is about the going rate for IBC. I hope you feel that you are going to kick that cancer's arse!!!! We are with you 100% of the way!!

I've been lucky with the rads so far - the only machine that broke on me was the CT scanner in the planning appt, so far so good otherwise. Been up this morning for number 8 - 5 more to go. Bumped into Pink Princess! She wasn't pink but was definitely looking good, and Weme who is now sporting a fine head of growing hair. Onwards and upwards, ladies!!

Lisa hope the rash is clearing up, and legs less wobbly.

Sorry no more individual mentions - gotta go to bed for nap am shattered!

Love Teresa xx

[weme]

Oh, forgot to say, I mentioned my weepy toe to him and he says it is probably the chemo that has caused it and I may as well stop taking the ab's as they aren't really making much difference. He thinks once the nail falls off it should be fine, there's no sign of it doing that any time soon though!

Weme

[weme]

Hi all

Had zap no 10 of 13 today and an appointment with the onc. I had my suspicions that he wanted to see me because the path report has changed from initial dx. My original IBC was TN, they tested the cancer found in my lymph nodes and it turns out that that cancer is oestrogen + so, onc advises that I start tamoxifen straight away. Not sure how I feel about that, I was happy that I didn't need to take tablets or have any further treatment but according to path report it has a 20% chance of being effective. I also asked what the chance of me being here in 10 years and like Christine I was told 50% chance. So, I've agreed with tacking tamoxifen and I've got the tablets but still dont know if I really want to take them. The decisions we need to make are sometimes difficult aren't they? The daft thing is it could stop me getting bc again but could give me cancer of the womb instead, and of course the other se's like hot flushes and weight gain (I've got enough of that already) is another thing to worry about. I'm off to have a think about it and do a bit of work.

Weme

[3network3]

I saw the surgeon today for path report, he said they found 9 nodes and 7 of them had cancer but chemo did away with it. He said I could have had more healthy nodes they don't know that now because chemo can melt them away. The 7 nodes affected didn't have loads of bad cells in them though. The tumour was 7 cm and was still so after the OP, but cells showed a significant response and that's what they would hope for. Margins were clear, but he says there could still be cancer cells in the skin for example, they never know that. So without any treatment my 10 year survival would be 25%. With chemo it increases by 20%, with Herceptin by 30% and Tamoxifen another 11% if it all responds well. He did say though because it has been a big tumour and due to its node involvment and inflammatory character the 10 year survival is around the 50% with treatment working well

Pleasant1, machine keeps breaking! How reassuring! But at least your nearly half way through :). I should start rads in 3 weeks or so.

Christine xx

[Pleasant1]

Oh, fancy that, now playing on the radio Leonard Cohen: 'So Long Marie-Anne'. So beautiful and so apt… x

[Pleasant1]

Hi All
I've not been on for ages as been busy with other stuff and loads happening. But Lisa, you prompted this post! I read yours and want to reassure you as I had exactly the same rash/same place – but obviously on me! – and am sure it was because of the Tamoxifen as it happened to me soon after starting them. It's now completely gone and I just tried to ignore it as think it takes a while for our bodies to settle down after beginning the drug.

Lulu, (and all for a laugh) that relaxing break of ours turned into a joke. We drove all the way there; arrived 8pm after unloading a Morrisons shop, looked in the window; double-booked! Packed shopping in car, drove all the way home. More than a six hour round trip just to shop in Morrisons at Haverford West! We got home gone 11pm, totally done in and FED UP. It was all made more awful as my OH's father passed away on the same day so we had to drive to Dundee a couple of days later. So no relaxing before Radio for us!

I'm now NINE rads down, 11 to go. But the machine keeps breaking or power cuts or some spanner in the works so I've been cancelled twice and getting fed up of driving there and back for nothing. The machine that's currently working is old compared to the broken one and; oh long story but I moved hospitals due to distance and now wish I hadn't! How much do those machines cost? A small fortune no doubt. Lying under the old crappy thing today made me think it would be great to raise enough one day to buy one; not just for myself obviously!

Awful about poor Gingerbud and I can hardly read the forums these days for fear of feeling really down about the terribly sad death of anyone; let alone so young and with children.

Gotta go; neglecting my boys – another reason hardly been on here!

Best regards to all x

[Guest user]

Lisa, I tend to agree with Christine. Could still be the effects of tax (supposed to take at least 2 months before chemo leaves your system). I had my last tax on Monday, and today I am getting my tax legs (heavy thighs, can barely lift legs up an put one foot in front of the other) when I can barely walk. Last week, before final tax, every time I bent down to get something, which was hard work, the pain in my lower back was just awful. I mentioned this to the BCN last Monday, and she said to just mention it to my Onc next time I see her. Lower back pain has gone, but I reckon all these chemicals are playin havoc with our muscles. I feel so flippin old, all creaky and very inflexible. I think we're going to be suspicious of every ache for a long time to come, and there's certainly no harm in asking about it. Give your BCN a ring for peace of mind xx

Lizzy, great to hear from you, and to hear that you are getting back to a normal life and that your hair is growing well! xx

Gill, I meant to say, great news as re heart scan, and good that all your sisters can be screened earlier if they are concerned xx

[3network3]

Lisa your legs sound like mine, not in calves but in my thighs. I think it's the Docetaxel causing this pain. My fridge is low and when going down in knees to get something out, this makes my legs sore too big time. Six weeks post last Tax and it is getting better but not away yet. Re skin mets, surely with all this chemo it's not mets! Good to speak to professionals though, hope she can put your mind at peace again. Love and hugs, Christine xx

[Libralady]

Its just an odd rash slap bang in the middle of my cleavage and nowhere else. Looks like a raised reddish dry patch, almost like a touch of eczema. I put some betnovate steroid cream on it which has calmed it down but its still worrying. Im at my pre-op Monday so Im going to ask the BCN to look at it.

Ive also got this intermittent pain in my left breast which is worrying me no end as its always in the same place, I've checked it and there are no lumps but again....something to worry about, its always something.

I must say I've started to up my walking and the pains in both calves and thigh is awful when I start to pick up the pace, is that just from lack of use over the last 8 months does anyone reckon as my mobility really took a dive? its really achey. has this happened to anyone else

[Lizzy1977]

Hi ladies, just dropping in to say Hi. I've not been on for a couple of weeks as have been totally manic at work as it's our year end and I also seem to be back in the swing of things. My energy levels are pretty much back to normal save that I am pretty shattered in the evening after a day at work. My fingers are still numb and veins still sore but my hair is now growing big time and I reckon I will be the pre-chemo yetti I used to be before long. Still getting loads of hot flushes.

Gill, Glad you managed to get two packs of Tammoxifen...I am seeing my Dr on Tuesday as my onc said I could have 3 months worth. I do hope so as it's a pain having to get to the pharmacy now I'm back at work.

AmysMum- I sympathise with the lack of sleep. I can't remember the last time I slept through the night. I wish my body would decided whether it's going to be hot or cold!

Well done for all you ladies who have finished chemo and getting on with rads.

Take care all
Lizzyxx

[Guest user]

Gill - Good to hear your heart scan was fine and that your sisters can now be screened earlier. Great your still doing so well at work. Save some energy for the birthday party though. I just got my first Tamoxifen prescription 2 weeks ago and they gave me 2 packs. I was wondering if it was to make you pay more for the prescription but remembered you get free prescriptions in Wales too, so that wouldn't make sense. It must cost more in admin as well.

AmysMum - Hope you get more sleep soon and it's good you're not doing too badly on rads so far.

Lulu - Just as well you insisted on having the abscess removed. That's really good news about your son too.

Kym - Thanks for thinking of me. I'll be thinking of you and hoping you pick up soon post-Tax.

Lisa - Hope you've stopped worrying about skin mets, I'm sure it's just a rash from the Tax as you've had such awful skin problems with it.

Finally started rads yesterday. Still seems a long way to go and too early for SEs yet.