Dodo/Jo I wasn’t offered a choice because of where my cancer was (behind the nipple) and not having big breasts would have had a dug out volcano with no nipple! But as it turned out more than the one cancer in there and pre-cancer too so mx was inevitable. I did feel relieved to have the whole breast off because I thought it would mean no recurrence and no radio but in fact not the case- still have to have radio to recon breat, axilla and chest wall(?). So it’s difficult to say whether advantage or not in your case- I generally tend to go with the docs- not just because they see so much but also stress of choosing…
Hello, just been to see foalie, no name yet, but big and beautiful.
I had been feeling a bitter better today but a 20 minute landrover journey and half an hour of my feet as exhausted me and made me feel very sick again. When will this end, it is really crap.
Dodo, I’m v hormone receptive ER8/8 and PR 8/8 so apparently indefinite tamoxifen for me! I did take it for 6 months before chemo so know what to expect (for me hot flushes at night and achy knees!) but will def be listening to the women’s hour article, thanks for the heads up Aly.
Theresa, Aly and anyone else I def think we should try and arrange a get together, would be lovely to meet you!
Xx
It would be really good to hear of positive experiences on tamoxifen as it seems a lot of us could be on it for a very long time! It is worrying that so many women stop taking it (Womans Hour)- perhaps I’ll search this website for some. I had expected to get the menopausal stuff- hot flushes etc on chemo but so far this hasn’t happened so perhaps this will be later with the tamoxifen? Isn’t the problem wanting to a) see the light at the end of the tunnel and b) want to be who/how you were before BC? That’s why I’ve got a bit worked up about tamoxifen I think- still can’t let go of the pre-BC me despite the very visible evidence!!
Namaste- I also have my chemo treatment at the Sussex Cancer Centre- have you found it ok there?
Barbara, I was on it for 6 months, I was given it at my first appt (along with zoladex which i’m still taking) and didn’t know anything about it so had no expectations, like I say the main thing I had was getting v hot at night (which still happens so maybe the zoladex?) and achy joints which actually got a bit better when I changed brands, others have said that they react differently to different brands as well, certainly SEs nothing like chemo! I think part of it is knowing you’re on it for so long which makes it feel like you can’t move on. I try to see it as just replacing the contraceptive pill which I’d been taking for 20 years with a different pill rather than as something I do with cancer.
Evening moonies,
hope everyone is o.k
Ann so glad baby is here.
Sorry if I’m being personal but I started bleeding last weekend and am still losing a week and half later not lots obviously getting rid of all the crap that is in there before chemo I was regular every 28 days hoping that this is the end .Sorry if it is too much info 
Marie
Hello Ladies
Amazing how near we all are really, maybe a meet up in town or South London…or if anyone has any ideas lets put them all forward…would be great to exchange stories, hats, wigs and anything else.
I really don’t mind where, happy to travel x
Namaste, I know where your coming from about feeling alone, don’t there are some amazing stories on here, have you checked out under the heading Triple Negative…plus things are changing all the time. I’ve had a look at various things, and got myself worried sick about, however it’s not all doom and gloom…very interested in paclitaxol treatment that your having. What was the info they gave to regarding it??
Can safely say my hair is slowly going…dressing my little girl this morning when she pulled a small cluster without really trying…Time to book the hairdressers me thinks…
Teresa x
Zuzy and Barbara : When I read about you (and others) and Tamoxifen and listen to Women’s Hour I wonder how I got to be on Letrozole and whether it is better or worse for SE. (I had one solitary hot flush the whole 6 months I was on it- plus aches and pains and total numbiing tiredness a lot of the time. But more stamina than I have now after only the one session of Chemo) All I can say is that I’m slightly dreading going back on the stuff after Chemo. I live in hope that being on it without the threat of surgery or chemo looming in the immediate future (hopefully) I will cope with it much better.
Marie: It just seems to affect every part of us. Hoping you are getting medical advice about what the loss is likely to do to your bloods?
FEC-T 1/6 Day 15 I am now incurably hooked on Hula Hoops. What a sense of well-being they can impart, especially taken with good Ginger Ale or Ginger Tea! It reminds me of afternoons at my grandmother’s house when I was a kid. Only it couldn’t have been Hula Hoops then as they weren’t invented until 1973 (Ha! I’ve even looked them up on Wikipedia!) I think I could chart my different stages of recovery from chemo by which packets I can tolerate- it was the red ones for the first 5 days, then a gradual toleration of the blue and green packs; now I am ready to try the brown and orange ones. Then back to the reds, probably, when i have my second cycle. Needless to add I am nearly back to normal (apart from a stupidly large bl**dy bruise where my shoulder brushed against a stone wall when I lost my balance carying a tray of glasses) and eyeing up the garden for a weed blitz over the weekend. Then back into my basket for the next cycle on Wednesday.
Does anyone know anything about Shingles? My Onc says I am more likely to get it from myself (having had chicken pox exactly 60 years ago- I watched the Coronation from the sofa as my mother painted me with calamine lotion) Other sources of information (Onc nurse for example) seem to think it’s important to stay away from children who have not had it. Surely any shock to the system, infection etc can touch it off? Is this a case of the medics not being entirely sure what the immune system is up to or have I missed something? I have 2 grandchildren who have not had chicken pox. I would hate to miss spending time with them.
Penny- my Onc also emphasised that the most likely sources of infection would be not from outside but from dramatic pause- WITHIN- hadn’t thought this could go back so far- 60 yrs you say! it’s like be afraid- be very afraid of yourself and what you can’t see in yourself. I think you’re right about the medics not being sure about the immune system. Still- do you put the hula hoops on each finger and eat them off one by one?
Went to see a friend this evening with scarf on - her husband asked if I was sailing on the high seas hoho- first I said no I am auditionning for Pirates then said this is what cancer looks like- felt like I’m losing my sense of humour but do feel sensitive about going out with headgear still.
FECT 2/6 Day 16
Marie I also had bleeding last week but only for 2 days. Thought they had gone for good as was later than should have been, I too very regular before this. Much lighter though so think they will gradually stop. I was a bit surprised as I already thought I had had my last one.
Penny, my understanding of shingles is that the virus is inside you and can be triggered by different things, like pregnancy or stress. I don;t think you can catch it from someone having chicken pox although my nurse warned me to stay away from children who may have it which is confusing. I was also told by onc that more likely to get infection from myself. Scary!
Would be nice to meet at some point but how we co-ordinate all our safe times I don’t know, especially if we are going into town on public transport.
Hi ladies, FEC T 2/6 day 8
Marie I had the same, bleeding on cycle one, stopped after about 8 days. Onc says this is normal even though I thought periods had stopped in January (a month before dx).
I have had shingles twice Penny and am dreading getting it during chemo.
I agree about the danger from within, that’s exactly what my onc said too. I actually feel quite worried today!
Yesterday I wore my new headband scarf, ( called Mia from Bohemia ) and my Dad said…“you look like a gypsy”…normally I would have laughed…but my sense of humour is on holiday!
Thinking of everyone and wishing everyone as few SE 's as possible !!
X
morning ladies
FECT 1/6 day day 17 (I think !!)
Well it is nice to feel almost human again (in comparison) even if its only for a week ! i will be out of sync with you all for a while now they have delayed next chemo
yes ladies I can sympathise I too had a period last week while in hospital, as if I didnt feel rough enough it decided it was going to be really heavy and they had to go down to maternity to get me some of their pads it was that bad - certainly going out with a bang I reckon!
I havent plucked up enough courage to go out with my scarf, hopefully Eleanor Wigby arrives tomorrow, but I know I going to feel really odd with it - totally bald now, will have to take a photo, I look like an alien from Argos ad!
infection - yes I totally agree with you its not just the risk from outside but the inside risk, in my case last week it was exactly like that, normally your body can cope but when it hits that low thats when problems start to happen, please keep on checking temperature etc and report anything you dont feel right with, it can go very dangerous very quickly apparently.
well just pottering around today doing the odd thing but just doing what I feel like
hope everyone is ok this morning. its not really sunny here but I dont mind
currently waiting for Asda to deliver shopping - could get used to this!
hugs moonies
Karen
xx
morning ladies
FECT 1/6 day day 17 (I think !!)
Well it is nice to feel almost human again (in comparison) even if its only for a week ! i will be out of sync with you all for a while now they have delayed next chemo
yes ladies I can sympathise I too had a period last week while in hospital, as if I didnt feel rough enough it decided it was going to be really heavy and they had to go down to maternity to get me some of their pads it was that bad - certainly going out with a bang I reckon!
I havent plucked up enough courage to go out with my scarf, hopefully Eleanor Wigby arrives tomorrow, but I know I going to feel really odd with it - totally bald now, will have to take a photo, I look like an alien from Argos ad!
infection - yes I totally agree with you its not just the risk from outside but the inside risk, in my case last week it was exactly like that, normally your body can cope but when it hits that low thats when problems start to happen, please keep on checking temperature etc and report anything you dont feel right with, it can go very dangerous very quickly apparently.
well just pottering around today doing the odd thing but just doing what I feel like
hope everyone is ok this morning. its not really sunny here but I dont mind
currently waiting for Asda to deliver shopping - could get used to this!
hugs moonies
Karen
xx
thats exactly how mine is nothing then a big bleed then nothing and then it’s like a bubble bursts I thought I’d wet myself at one point!!
Marie
come on mother nature, we are going through enough already lol
Karen
x
For those of you who missed it the Women’s hour link is BBC Radio 4 - Woman's Hour, Radical feminism; Children and bereavement. It’s about 20 miutes into the programme after the one about mentoring young girls. Listening to it again I guess the jury’s still out on Letrozole. I’ll happily take it for 10 years if they let me though.
Barbara: Yes, I can just about fit a hoop onto 4 of my fingers with my nails as short as they are at present. The others seem to be too swollen for some reason. Maybe it’s from eating too much salt. So if I cut down on Hula Hoops then I can see if the fingers shrink down to the right size. But then……oh bother, this is all too difficult for me. I’ll get back to you on this one.
Jo and Rachel : About the immune system thing- I expected to get ill this time because when I started my chemo I still had swollen glands from the flu I got on Mother’s Day. In fact the CS picked them up on the USS in April and took lymph samples she was so concerned (all –ve as it turns out.) When I began chemo, when I started to come back to normality on about day 5, I noticed the swollen glands in my neck had gone. I am sure the steroids helped somehow. Maybe it was the hula hoops? Anyhow, I feel a lot stronger as a result going into Cycle 2…the sun shining certainly has helped. Thinking back to when two of my kids had Shingles, they say Zovirax helps if you start it right away but I know there is a lot of disagreement about this among GP’s. I’ve got some calamine lotion all ready just in case. In the long run I think I hate cancer more than Herpes Zoster.
FEC-T Cycle 1 Day 16- Our light bulb has failed in our 18 year old fridge. We started getting a lot of pressure from YD and MD to change it- the fridge not the light bulb! (they both have elegant eye-level fridge freezers with super duper soft closing mechanisms.) In the end. ED, who is medically trained, has diagnosed complete collapse of the seal system around the door - a potential health hazard. So we had to go to look at new fridges today. We found one that fits under the counter and it is being sold off cheap so that was a blessing. I really never thought that cancer would mean having to change the fridge! I suppose it’s one way of being absolutely sure of your food hygiene. The new one will also have glass shelves which I believe will be easier to clean. I shall just have to put off paying for the wiglet.
Hello everyone, hope your all ok. Thought i would tell you all about what a positive day it has been, we hear so much about the nasty side of this. Got up this morning after the best nights sleep i have had since this nightmare started, decide to go to ‘The Big C’ in Norwich( wanted both my girls with me so let the youngest bunk off school, GREAT she said). And actually put make up on which is something i would not usually do! Had a nice time there with coffee and biscuits, tryed on lots of headwear and bought one, got some good books and booked’look good … Girls were brilliant helping me tie scarf and giving honest opinions. Came out and a security guard happend to go past on a golf cart so i shout out ‘Give us a lift’ and to our surprise he did all the way back to the car and he was hot. I would never have done anything like that before breast cancer. anyway had lunch at mum and dads and have been shopping with HO now home and feel buzzy. Hope this lasts.
Marie; hope your feeling better and maybe get something to help. have sent you a message
March 13; maybe a name competition ?
Sarah great to hear you are feeling do full of energy and power…I wish I could bottle the energy i feel when the sun is out to use when it isn’t. All suggestions gratefully received.
FEC T 2/6 Day 17
Mills1 - Great to hear about your fabulous day. I have had a good week, I have managed to do a fair amount of work, half an hour of exercise each day and spend some time in the sun. I even went out for dinner one night with my SIL. All with no SE. I love week 3!!!
Penny - You have got me thinking about my own fridge now…
Have a lovely day moonies.
Jo x
FEC_T 1/6 - Day 16
Morning Moonies - just checking in, I’m having a good week too, doesn’t the weather make a difference - have done a lot of catching up with friends and neighbours this week and also even managed a little cycle ride in the park yesterday although this did wear me out and I was very tired last night.
On the chicken pox front I was really worried about this as my youngests class had got a whole load of cases, she had it very mildly (just a couple of spots) when she was only 12 weeks old so could pick it up again. I phoned the Chemo Helpline to check with the nurses and they said if I’d already had it (which I have) it shoudn’t be a problem - this contradictory advise is so annoying.
I’m off to my music gig tonight - its outside and the sun is shining so hoping it will be a positive experience and good preparation for the festival next week. Fingers crossed nothing strikes me down (would be just my luck!)
On the period front I haven’t had one for about 3 years as I was on Depo contraceptive injections which stop them - obviously have come off that now so waiting for the inevitable - will probably happen next weekend just to coincide with everything! Still no hair loss but am guessing its to early for that - anyone around the same time as me feeling any tinglings yet - my ‘lady garden’ is shedding daily but nothing else…
God what’s with the Pirate / Gypsy comments - think I would swing for them if anyone said that to me!
Enjoy the sunshine everyone but be careful and remember to cover up and wear lots of suncream.
Aly xxx