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May Moonbeams

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Re: May Moonbeams

Hello lovely Moonbeams,
Day 11 of FEC 1 and I feel as if nothing has happened, long may it last. Cannot believe my hair has not started falling out yet.
Had to go to GP on Friday with a mouthful of ulcers but they gave me some syrup which eased it almost immediately, they all did a blood and the hospital has just telephoned to confirm all is ok.
I have been playing in horse muck this morning, opps, I am in the 'danger' period now, but I feel great so fingers crossed no harm done.
I have been told to make a complete list of all the side effects I had last week and tell the onc next week. I hope the next session is not so troublesome.

Welcome to everyone new, I hope all goes well for you and the support you will get from all these lovely ladies is fabulous, they encouraged and got me through it.
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Re: May Moonbeams

Good news re bloods Dodo and good luck on Weds, mine are low again, better than last time but still too low so yet more booster injections and then repeat bloods Weds morning again to see if I can go ahead....grrrrrr!
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Re: May Moonbeams

Hi Moonbeamers - just wanted to share a bit of very positive news with you.
My colleagues Mum was diagnosed with BC around the same time as me - a lump in each breast, she started chemo about 10 weeks ago (not sure what regime) and has just got the results from her mid-treatment scan - one lump has disappeared completely and the other has reduced by half. So HANG IN THERE LADIES it works!!
Dodo really pleased you enjoyed the gig its so important to get out there and do normal stuff if you feel well enough - it truly does lift the mind. Thanks for the hair info to, guess I'll just have to wait and see what happens. Well done on 'good bloods' always a relief to have no delays and know that the body can recover itself.
Becky - hello and welcome - sorry your here but your in good company, very glad your not experiencing too many nasties!
xx
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Re: May Moonbeams

FEC T - 2/6 Day 20
Aly - So glad you enjoyed your gig. I also went to mine yesterday and it was lovely to fel normal for a while, excpet for Wigfield, who also enjoyed the concert. Late night though so am shattered today. My hair started coming out a few strands at a time initially and then increased to more. I still have some though and it does seem to have really slowed down in the past week or so. Perhaps I won't lose it all?
Been to see onc today. Bloods all ok ready for cycle 3 on Wednesday. Will be having an ultrasound towards the end of this cycle for an official measurement to be taken but by feel alone the lump does seem to have shrunk a bit. Still have to decide about the port but have signed the consent form (I have 6 weeks to back out if I want to...) Not convinced but may not have a choice because of my veins.
Highlighted
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Re: May Moonbeams

Hi all moonbeamers
Gosh I have discovered a treasure trove of information here and will spend a happy afternoon reading all the posts to compare notes and try to work out what is happening in my body. I had my first FEC on 30 may and have so far felt fine with no nausea or sickness. Love becky x
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Re: May Moonbeams

Thanks Penny - such top tips - going to keep coldcapping unless the hairloss gets to catastrophic proportions - can use my wigs with a wig cap and hats and scarves to cover the damage - this seems to be what a lot of cold cappers resort to and I've heard that the hairloss is worst with the first dose and gets better with the next ones as there's less hair to freeze through to the scalp - makes sense. Would quite like to give my wigs an outing whatever happens! I too rather liked the scarf cascading down neck look - thats how it looked nicest when I went to the headstrong scarf thing at Barts. Loving the accessorising tips - got to make this as fun as possible!
x
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Re: May Moonbeams

FEC-T 1/6 day 20: Aly commiserations about the hair but glad to hear you're tingle-free just now. For me it was like flicking a switch- suddenly on day 17 I was clogging the drain when I washed my hair, and by the evening of day 18 most of my grey had fallen out. (!) I now look like a very cool but follicly-challenged person with a DA (thanks to the aloe vera gel). However neck and shoulders decorated with rogue hairs so I keep it all covered. About headgear - can't remember the hat you're describing but some of the outerwear sites (? Joe Browns?) have peaked hats with a piece of bandana material down the back to cover the neck. Annabandana has lots of scarves with a kind of hat thing which goes over the head part and then has an elastic and a tie- a little more expensive but they are very sturdy and would do for breezy days. I found this interesting: http://www.youtube.com/watch?v=IaPNix3z-Aw .............and what I do is arrange my scarf so it cascades down the back of my neck, which makes me feel as if I still had long hair and it protects my neck which is not used to such exposure! I also use the bands for scarves under hats-they sit much better than with knots. I've even invested in hairbands and scrunchies in the same colours as the scarves, to the joy of my EGD who has divvied them up with me!
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Re: May Moonbeams

FEC-T 1/6 - day 18

Morning Ladies - so I'm braving work for a few days (nice to feel normal) and thought I'd do a cheeky post whilst checking my emails!

How's everyone doing this week - some of you have round 3 I think - wow how amazing. I cant wait to get to that 1/2 way point. Hope everyone else's SE's are keeping at bay.

Despite the cold cap the hair loss has started - not a massive amount at the moment - quite a lot in the shower this morning when I washed my hair for the first time in 5 days and odd strands of loose hair here and there throughout the day but still not noticable to anyone but me. I haven't had a sore scalp at all just a bit of tingling - not sure what to think - for those not coldcapping how did the hair loss start - was it gradual - loose strands working up to larger clumps or more excessive from the start? Am quite philosphical about the CC not working but would love to keep hold of it for just a bit longer!!

Someone mentioned a really fab hat with a back scarf thing that helped protect the neck from the sun - and also hide the lack of hair - would love the details can't seem to find it on the thread.

I survived the gig unscathed (which is more than can be said for most of the people there!) even the loos were'nt too awful. Bodes well for this weekend, just hope my bloods don't scupper my plans!

Good luck those of you with treatment this week and for everyone else I hope the SE's keep at bay and the heads stay itch free.


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Re: May Moonbeams

Allo Moonbeams, Aloe Vera (sorry) I second that Rachel about the gel it is amazing and my scalp almost feels normal. Thanks you Karen. I decided to go to H&B on my way to work (they open in the mall near my office) and I was there at 11 am the first customer...best detour I've made all year...made it possible for me to sleep all night long!
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Re: May Moonbeams

Morning Moonies,
oh it's so nice to feel nearly normal this morning, apart from a headache,. Which is weird considering I have only had about six hours sleep and didnt nap yesterday. But I love it!
I didn't risk using tampons after the chemo. But think you could ask your oncology department to check?
thanks for the Aloe Vera advice ladies - amazingly I still have a few tufts of hair.
wiggy will be getting its first outing tomorrow briefly. Going to wear it for my quick coffee at work with the staff tomorrow. Then sending it off to be stretched as I am in the large head brigade!
Has anyone heard from Littelscoot or Sooz recently??
Have a good day everyone
x
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Re: May Moonbeams

hi moonbeams, like some of you, i too got my priod yesterday and was wondering what advice others had had on the subject of using tampons. I think i was advised against it but im at day 13 and thought my immunity would be getting back to normal so may be able to use them. What have you been told ladies?
As regards to hair, i have mine cut to a No.1 and it is sensitive, i am using simple shampoo and conditioner but gonna get some aloevera, so thanks for the tip.
love to all x
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Re: May Moonbeams

I can second the aloe vera gel. Very soothing. Sold in Boots as after sun treatment - I spent ages looking for it in the skin care section, but was shown it in the kid's and holiday section!
I had my number two cut as soon as the hair shed became significant, and it was SO much more comfortable after the first day, and much less freaky to have very short hair shed than four inch lenghts dropping all over my face and cothes. Yuck!
Jane x
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Re: May Moonbeams

Thanks Karen- I'm off to buy some on Monday. Just had a look at the spray I've been using- it's got Aloe Vera in it and Chamomile! Not quite strong enough but it does a good job in the short run.

I just can't get over how quickly this chemo thing has happened to me. 6 weeks ago I knew nothing about it and now thanks to all you Moonies and our "Aunties" on other threads I feel as if I am getting a grip on it. The difference is between me sitting in the bathroom weeping and wailing (the "before me") and what I am actually doing (The "Now Me",trying to find some help and feeling supported and if I can beat this challenge!) Yay moonbeams.

PS my MD got to Maggies W London in 4 1/2 hours- that's 15 miles (!) and loved it when she got there. While she was walking she reached her money target. Such great news for her and all of us and Maggies too!
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Re: May Moonbeams

Hello moonies
Just a quick post, I was told aloeVera gel from holland and Barrett is loving and soothing for the hair folicules. Mine was really tender the other day but this helped - Its the extra strength one
Well Eleanor Wigby got an outing today, and the lady at the til remarked on how nice my hair was and had I just had it done so I had to tell her and she was amazed so I think it was thumbs up, will post photo later, I'm shattered after my trip out!
Enjoy your weekend
Karen
X
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Re: May Moonbeams

Ah Jo so lucky re sickness. I too feel lucky as hardly any nausea compared to what I was expecting.
i am going into my school on .tuesday and taking cakes for the staff and my class as its my 50th birthday....the kids know i am sick but I haven't seen them since early February. the Head says it will be good for the girls to see me and know that I am still around. I miss work so much but as the kids are all special needs and my consultant knows the school well, he says its far too dangerous for me to work even on good days. I was going to offer to do work on the laptop but i do seem to be suffering from chemo fog brain!
Enjoy your concert x
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Re: May Moonbeams

FEC T 2/6 Day 18
Thanks for the reassurance Rachel. I haven't had sickness with FEC anyway so I am more hopeful now.
My Head came to see me this week and the kids in my school held a bake sale ro raise money for Cancer Research on Friday in honour of me and apparently it went really well. It is lovely to see the inspiration these circumstances can inspire in others. I have never had so many people willing to do things for me.
Looking forward to my concert tomorrow. Smiley Happy But then back to see the onc on Monday am for bloods and progress check - hopefully this b*****d is shrinking!
Jo
x
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Re: May Moonbeams

Morning Moonies!
Penny I found the scalp tingling thing stopped about day 14 of cycle one. Such a relief. Hope it stops Soon,,,,,
Dodo, I was really worried about changing to the T part of FEC until I met a lady in the unit last week.....she asked me what treatment I was having and I said I was scared of the T part....she said, oh please don't, it was easier! She said no nausea at all. Then yesterday, a family friend who has just finished FEC T sent me an email telling me that the T part was so much better then the FEC and the side effects were easier although she didnt elaborate. She did say she had manaGED to eat normally on the T part and regained the weight she lost on the FEC part.( she was slim before all this anyway). Hope this reassures you a bit because it certainly reassured me!
Ann/march13 I found car travel makes me feel sick now,,,,, get some travel bands from the chemist? They do help.
enjoy the sun ladies.
Rachel x
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Re: May Moonbeams

Oh ----- FEC-T 1/6 Day 18 Thanks Jo and Zuzy- I just tried sunburn spray and it helps. Finding combing out the hair over a towel in the bath is a good way of dealing with it. Maybe there are some songbirds out there making late nests who might like some for a nest liner? I think I'll apply the scissors next week while recovering from Cycle 2 meanwhile I've got a cap or two to wear!

The best thing happening today in our family is the Maggies Centres Power Walk. MD is doing it and has raised £971 so far. Going out to lunch with friends (planned before we knew about the walk) but keeping up with her on line all the while. Next year I'll be there, possibly with a scooter, but I'll be there!
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Re: May Moonbeams

Hi Penny, same as Dodo I had a number 1, still had some follicle pain for a couple of weeks but nowhere near as bad as before I did that, I had it done 3 weeks ago and am now really patchy so am thinking might get oh to just shave off what is left, fed up of cleaning up bits of hair from the bathroom!
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Re: May Moonbeams

Penny I didn't apply anything but had it cut as short as possible without shaving. This really helped.
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Re: May Moonbeams

Morning moonbeams- can anyone recommend something to apply to my scalp as the hair comes out? Anything apart from a razor- not ready for that yet. The tingling in the follicles is getting a bit much.
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Re: May Moonbeams

Dodo, I'm also slightly dreading the change to T, from what I've heard the big thing is no sickness but achy bones and more tiredness, can't believe we're on no 3 next week already.
Sarah, I was told that tiredness will get worse and you're more likely to pick up minor ailments such a ulcers etc as you never recover to the level you were at the time before but that if you aren't sick for first one then you shouldn't be. That seems to reflect my experience between 1 and 2. I also heard lashes and brows likely to be later.
Aly, enjoy the Stone Roses, everyone else have a lovely, sunny, weekend xxxx
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Re: May Moonbeams

Mills - watch that Cliff!!! I love Thelma and Louise such a great movie.
On the hair front I cold capped so wonder whether I'll start losing a little later in the cycle - I'm convinced it didn't work as I didn't think it was cold enough, was expecting my head to freeze and as I've got very thick hair wasn't sure that the 'freeze' made it through to the scalp, certainly didn't feel that way but maybe I was so distracted by the bright red poison being pumped into my veins it that it took my mind off the cold. Expecting to lose quite a bit of hair this cycle whatever as that's the norm even if it worked.
Eyebrows and lashes - I think if you lose them that comes a bit later - for a lot of ladies it seems to happen on the 'T' cycles of FEC-T so if your just FEC maybe you'll be lucky?? Also some people don't lose them at all - luck of the draw a bit like this bloody disease so hope we get some of the luck.
Wow can't believe that some of you will be starting number 3 next week - time really does go by doesn't it - I'm braving work next week for a few days to cover someone on holiday, hoping it will speed up the week as I'd quite like to get number 2 under my belt and as I switched my day to a Monday have to wait a few extra days for the next one.
I have been watching the French Open tennis today and thinking that it'll be rather nice to be able to watch all of Wimbledon this year, there's got to be some perks.
Well, the sun is finally trying to shine in London so I'm donning my 'festival hat' and heading to Finsbury Park to see The Stone Roses - I'll be dedicating my sing-along of 'I am the Resurrection' to you wonderful ladies!
xxx
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Re: May Moonbeams

It's FEC for me too. 1/6 day 11 and my scalp feels very sensitive, almost bruised. I go out without covering up so far but don't know how i will feel when bald. It wil be so nice if we don't lose lashes and brows. Is it possible that they won't fall out then?
I also get contradictory advise about SE will they be similar each cycle or are they cumulative? Can't believe some of you almost half way, wow well done and keep going, nearly there. Iwas a late moonbeam though, started on 27th .
PS. just watched Thelma and Louise with my best mate and now just popping out for a drive, wish us luck.
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Re: May Moonbeams

It's Just Fec for me!!
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Re: May Moonbeams

Alex - I can't believe we are starting sysle 3 next week. It does seem to be flying. Are you FEC T or keeping with FEC for all 6 treatments. I have got used to what to expect with FEC now and am dreading that things will be worse when I move on to the next bot for cycle 4...
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Re: May Moonbeams

Hi Moonbeams
FEC 2/6 day day 16. I have been keeping up with all your posts and sorry for those who have been suffering so badly, I feel quite lucky to have got off lightly with the SE situation. Obviously I have really washed out tired days sometimes, but have managed to get to work 5 and half days out of 7 this cycle. Regarding the head gear, I'm quite used to my short blond wig now and have had a second wig cut and shaped as I didn't like it quite so much when I picked it up (that was the free one on the NHS) so that one is good too now, but everybody I know says the blond one suits me better even though I have never been blond (more mouse brown really). I do find them a bit itchy sometimes especially as from day 12 ish I seem to come out in a rash on my face, neck and head. Been prescribed antihistamenes but I dont think they work and they make you drowsy. I dont need to be any more drowsy. I'm currently on my lunch break at work and today sporting my Madame Rio gypsy look curtesy of Bohemian website (good isnt it).
Not looking forward to round 3 which for me is next Thursday, but at least it's the half way point.
Best wishes to everyone. Alex
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Re: May Moonbeams

Barbara my eyelashes started falling out last week. This morning suddenly my hair started falling out. No warning except very dry beforehand. Can't wait to see what my scalp looks like. I have always had hair! Even as a baby. My poor mother lost all hers in the 1930's when she was on hormones to try to get her to ovulate. Fertility treatment must have improved over the years. She lost all her hair for about 6 months which gabe her an excuse to wear lovely turbans which were all the rage at the time. The treatment did not work. However, she went for a holiday 2 years later and came back pregnant!
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Re: May Moonbeams

Oh and has anyone lost eyebrow/lashes yet? Is it possible we might hold on to these?
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Re: May Moonbeams

Aly my hair started coming out heavily in the third week following FEC one- I had to have it shaved just before 2nd dose as it was drivng me mad. I don't mind the look of it at all now and find it much easier to go without any cover at home but have not had the courage to go bald and proud outside the house- wish I could- has anyone else done this? I feel I shouldn't be embarassed because I have cancer but then the other day saw two good friends ahead of me in the local park and 'hid' until I thought they would not see me!!And was wearing a scarf!
Enjoy your days moonies- sunshine, festivals, foals etc.
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Re: May Moonbeams

Enjoy the gig tonight and 'fill your boots' Who are you seeing ? Love the 'Lady garden' made me chuckle. Sunny in Norfolk again today and my best mate has come up from kent so all good. have a good weekend ladies and keep safe xx Sarah
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Re: May Moonbeams

Aly have a great time at the gig later. Re hair mine started coming out about day 13 in cycle 1 and Marie and Zuzy about the same point so def not too early. You are doing well to hold in there. Have fun. x
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Re: May Moonbeams

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
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Re: May Moonbeams

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
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Re: May Moonbeams

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.
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Re: May Moonbeams

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 ?
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Re: May Moonbeams

For those of you who missed it the Women's hour link is http://www.bbc.co.uk/programmes/b0214318. 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.
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Re: May Moonbeams

come on mother nature, we are going through enough already lol
Karen
x
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Re: May Moonbeams

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
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Re: May Moonbeams

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
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Re: May Moonbeams

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
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Re: May Moonbeams

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
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Re: May Moonbeams

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.
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Re: May Moonbeams

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.
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Re: May Moonbeams

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.
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Re: May Moonbeams

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
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Re: May Moonbeams

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
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Re: May Moonbeams

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.
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Re: May Moonbeams

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?
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Re: May Moonbeams

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