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Tamoxigang - 41 and counting

(995 Posts)
KurriKurri Tue 20-Aug-13 09:55:48

Morning all, new thread, croissants on trolley, and I'll put a brew on.

foofooyeah Tue 20-Aug-13 10:12:47

Morning, Coffee with hazelnut milk here .... surprisingly nice

Off fruit and veg picking shortly.

Malt, Im sorry but the Rod Stewart ref has me singing his greatest hits in my head and I am not a fan! Im sure it doesnt look like him but if it does perfect a gravelly voice and pretend you are a lookylikey

well done kk !
Am keen to see Mummy Pig t shirt gig - am v glad that mini still loves badgers smile
Will bring some fancies back from Waitrose

malteserzz Tue 20-Aug-13 10:24:42

Thanks for starting a new thread Kurri
Thanks for all the wig and hair thoughts decided not to bother wearing it today, small boys in the house already and they haven't said anything they probably just think I'm having a bad hair day ! When do eyelashes and eyebrows fall out ?
Kitkat good luck for your results

malteserzz Tue 20-Aug-13 10:33:53

Meant to say what a pain lily ! Was it a long journey ?

Gigondas Tue 20-Aug-13 11:04:34

My eyebrows went about cycle 4 and lashes a bit before. I didn't bother with wig etc around the house.

Lily that is a pain about ds but will be nice to have him home.

notJenkins Tue 20-Aug-13 11:07:00

Place marking ! Not sure if we will have 3G at the next site but will take more pictures !

KurriKurri Tue 20-Aug-13 11:30:43

I can't quite remember when my eyebrows and lashes went - but I do remember it was bit later than the head hair.

My hair went suddenly overnight too malt - it is a bit of a shock to the system. I never had a wig so can't offer any wig-wisdom, I have to say that although it was horrible losing my hair (I had v.long hair and didn't get it cut because I assumed the cold cap might work!) once I got used to baldness, it was quite liberating not having to wash hair/ style hair etc - no such thing as a bad hair day when you are bald grin
If your hair was straight, you might find it grows back curly (and vice versa).
And as you say - small children are utterly unphased by lack of hair, - its just adults that do the head tilting! grin

Gigs - hooray for being home, how are you feeling? when do you have to go back, are they letting you have a little break before the next op?

MAS - I am going to scoff one of your virtual fancies, as I am in RL dieting like a crazy person - I have my appointment with plastic surgeon in two weeks and I need to lose another kilo to hit my target, - I seem to have been stuck on the same weight for ages, despite my best efforts.

Waving to all, - sounds as if you are having great time NJ smile

Shootingatpigeons Tue 20-Aug-13 12:18:07

My hairy caterpillar eyebrows and eyelashes never really seemed to go, though they may have thinned a bit, I don't have much in the way of eyelashes normally, and sadly unlike my hair they didn't comeback thicker, fuller and darker sad other hair that I normally shave off only thinned a bit so I still had to shave which was rather adding insult to injury. My hair descended in the course of a few hours, once it started it seemed to be like lemmings hurling themselves off a cliff. malt at least you are not at a class coffee morning hosted by snooty house proud alpha mum grin I wore a scarf or beanie around the house, apart from the time I went around to shout at the tenant next door who played deep purple and Macy Grey (he was obviously going through a painful break up, "try to walk away and I choke.......my world crumbles when you are not here") at full volume at 3am. I thought I'd play the Cancer card, it didn't work, probably thought his pain was much greater than mine grin had to resort to parking the car touching one of his three Porsches, and telling a partner I knew at City law firm he worked at to tell everyone what he got up to at night, adding to the "sufferings of a Cancer patient" oh, and DH went round and threatened to thump him.

Sounds like a lovely day mas

gigs welcome home though sorry you were up in night, sounds good that movement is less painful and that you have good advice from specialist nurse. I am afraid goondog is much better at badger impersonations than peppa pig impersonations so hope they don't transfer allegiance completely.

kitkat hoping you have good news today.

Should be packing but DH has decided my priority should be to wash his car hmm you couldn't make it up..... Off to sombrero land to dance on hats tomorrow, bit tentative as it is just me and little pigeon and Foreign Office have about 10 pages warning of criminal scams . I know I am stupid intrepid traveller who has braved triad run tattoo parlours to get my hands on designer handbags but still I worry.....

Shootingatpigeons Tue 20-Aug-13 13:20:53

though I am of course very brave

kitkat1967 Tue 20-Aug-13 14:04:38

am back from onc and a bit upset. Turns out that the tumour is shrinking at an OK rate and tentative plan is to continue with FEC but he then said because of all the DCIS around it you will need mx anyway as the chemo doesn't work on that. So I was rather wtf DCIS has never been mentioned before why did I not know about this.
Anyway i know in the scheme of things it doesn't matter and there was a good chance I would need a mx if not enough shrikage but am annoyed that we were all on the page of 'shrink the lump and do a lumpectomy if possible' when this is actually not an option. DH has confirmed that the DCIS has never been mentioned before.

On the plus side he is going to give me cycl......(thing) anti-sickness meds in addition to everything else and has given me a prescription for Lorazepam (sedative) to start the night before as I am very anxious about going in.

kitkat1967 Tue 20-Aug-13 14:09:49

Malt - weirdly I still have eyebrows and lashes plus need to shave legs. Also had to pluck a few un-welcolme facial hairs and still have the annoying ones on my toes. My chemo nurse was suprised that I still have hairs on arms so i think I must have very tough hair folicles!!

KurriKurri Tue 20-Aug-13 14:13:26

Kitkat - sorry you have been upset, - its horrid when you feel you have not been kept properly in the picture, - it's your body and you should have an active say in your treatment, and that's not possible if you aren't kept fully informed.

Cyclizine (sp?) worked very well for me for sickness (after domperidone and onsmatron (or whatever its called!) didn't) it did make me very very tired though, - I think its an antihistamine too so has similar knock out effects! - but worth it if it helps with the sickness.

I also took lorazepam the night before each chemo - it helps calm you down and lets you get a decent nights sleep, without making you feel too zombified, - and you can fiddle the dose to see what suits you, - cut it down if it makes you too sleepy.

Shooting - have fun dancing on hats - da da dada da dada da dada....etc grin

kitkat1967 Tue 20-Aug-13 14:22:08

thanks KK - have presciption for 10 tablets - he said 1 the night before and 1 in the morning if I don't feel too zonked then take for as long as it helps - but no driving. Am relieved he took it seriously.

kitkat1967 Tue 20-Aug-13 14:24:19

who's going to be watching British Bake Off tonight? and is anyone bothered by Mr Hollywood's antics?

malteserzz Tue 20-Aug-13 14:33:50

Pigeons have a brilliant time very jealous !
Kitkat sorry to hear that hmm especially if they've only just mentioned it. But will all get sorted and you will be fine hold on to that thought.
I've only dipped into the great British bake off before but am watching all sorts of rubbish at the moment so will probably end up watching it !
Just walked to the shop with dd and she's now baking. Have locked the boys in the garden !

KurriKurri Tue 20-Aug-13 14:35:46

I've got a committee meeting tonight, but DD will record bake off and we will watch when I get back.

I don't really care what Paul Hollywood gets up to in his spare time (!) but he used to talk about his wife and DS - so it's a bit sad they've split up. I hope Mary told him off! grin

I watch it mostly for Sue Perkins - she is my girl crush grin

Gigondas Tue 20-Aug-13 14:45:09

Ohh have fun pigeons - you can show me your hat dance o. Return.
That's annoying kitkat as not only is it shaking your understanding but you lose trust at their bad communication skills and that takes ages to rebuild.

Yes love gbbo so will be glued to it -you will like it malt. Am into celebrity master chef for first time too. Don't care about Paul Hollywood private life really.

Having sneaky tv watch in bed but doing ok as pottered round gouse, been to shop and ordered treat food from online deli .

Shootingatpigeons Tue 20-Aug-13 14:57:11

kitkat that must have been a shock and it is bad they didn't mention it before if they knew it was there. I had a lumpectomy and when the margins were not clear I had to go back two days later for a mx. They then found all the DCIS throughout all of the breast, to be honest it is all a blur, dx and both ops in a week so I don't remember having a chance for my feelings to catch up but I really don't feel now that the mx was a worse option. It meant I escaped rads, not sure if that is your hospitals regime but my Consultant advised that rads gave no advantage after a mx providing there were not a lot of lymph nodes involved (sorry can't remember number. )

kk you can't have Sue, she's my bff grin , and you can't have Victoria Wood either

Shootingatpigeons Tue 20-Aug-13 15:06:44

Re Paul Hollywood I will keep him on my good baker and GBBO judge lists but he is off the "I would" list. It's not short though he won't be missed, and if he is attracted to diminutive signoritas (Ha Ha Ipad tried to correct that to sin orbitals) then he won't be sad to miss out on a fat strapping Yorkshire lass.......

KurriKurri Tue 20-Aug-13 15:14:28

I always imagined his foreplay would involve a lot of kneading - hence he's never been on my list also long grin

Gigondas Tue 20-Aug-13 15:21:00

grin At your list. I bet gregg Wallace is on no ones list. Am shockconfused at his very glam women.

KurriKurri Tue 20-Aug-13 15:33:14

gregg was involved in fisticuffs last night apparently shock

Am also amazed at his glam women, - who would go out with someone who puts a whole spoon in their mouth sideways when they eat?

HerNextDoorAt21 Tue 20-Aug-13 15:35:10

Hi everyone. Am marking place and reporting that topsy is having a great time in deepest Southern Ireland. Weather is not great for her today but has reported to be "having to go and see that bastarding Smurfs movie"

All fine for me really, the remianing hole keeps closing every other day then opening up again so have resigned myself to further surgery some time in the next week or so to ge it closed for good !

Glad to see you home gigs and hope everyone else is OK

Shootingatpigeons Tue 20-Aug-13 15:36:26

I did have to finish with a boyfriend once due to excessive kneading. He then went out with one of my closest friends and eventually married someone who I like a lot but I always suffer from an irresistible urge to ask how they cope with all that mauling, he still does it, always kneeding their shoulder or elbow or whatever is in view and I know it doesn't stop there .......grin

Gigondas Tue 20-Aug-13 15:41:43

That would get on my nerves pigeons. Local question - is Reuben's open yet post holiday?

I saw that kurri. Not only is there the spoon thing, the shouty voice and he has the worst teeth on tv and I don't usually notice these things.

Hnd - glad topsy having fun even if had to see smurf film. Bah about wound (my leg wound still not healed 3 months on) but I suppose some end on it would be good.

Shootingatpigeons Tue 20-Aug-13 15:43:40

kk in the land of trophy wives you see a lot of glam women with Greg Wallace types. I once thought someone's husband was the gardener, what with him being 70 and dressed like a gardener with a fag hanging out of his mouth, compared to her head to foot blingy Chanel. I am sure it wasn't the mansion and money that attracted her to him....... gigs full story for next meet up.

Shootingatpigeons Tue 20-Aug-13 15:45:52

gigs it is, opened on Monday grin ciabatta for the trolley....

kitkat1967 Tue 20-Aug-13 16:28:54

Paul Hollywood used to be 'my older man' until I found out that he is only 1 year older than me - made me realise that both DH and I are wearing quite well really grin. (I honestly thought he was mid fifties!!).

kitkat1967 Tue 20-Aug-13 16:32:11

and re onc appt today - I honestly would have been OK about mx if that was decision back in May but all this time I have been told that if we shrink the tumour it will only be a lumpectomy - kind of gave me something to aim for.
In some ways though it will reduce my future irrational cancer thoughts and I know it will be OK. Just means a third surgery next summer to complete reconstruction but hey ho.

BetsyBoop Tue 20-Aug-13 16:56:41

Just checking on from mini break and marking spot, but spent half an hr trying to post this ad 3G signal weak and intermittent, back Thurs, hope everyone ok, will catch up when I get back as only a few posts would load....

BetsyBoop Tue 20-Aug-13 16:57:49

Just checking on from mini break and marking spot, but spent half an hr trying to post this ad 3G signal weak and intermittent, back Thurs, hope everyone ok, will catch up when I get back as only a few posts would load....

malteserzz Tue 20-Aug-13 17:51:08

Will watch bake off tonight as recommended by fellow trashy tv watcher gigs !
Betsy enjoy your mini break smile
Hnd glad to hear topsy is ok, I enjoyed the smurfs movie !

Starving today reminds me of early pregnancy !

Gigondas Tue 20-Aug-13 17:58:03

Chemo reminds me a lot of early pregnancy- odd appetite , weird taste, nausea, tiredness, moods etc.

What was the programme with Jane Macdonald on malt? I am only gutted that I discovered sun sex and suspicious parents as series ended.

kitkat1967 Tue 20-Aug-13 18:05:51

Gig - I've seen a few of sun sex and suspicious parents - very wierd programme but good for late night viewing if you can't sleep. I'm pretty certain it's often repeated on some of the satellite channels.

malt Bake Off isn't trashy !!! it's the very jolliest entertainment - also fan of Celeb. MasterChef...John Torode stuffs a huge amount in his gob- Gregg holds his utensils like a shovel..
hnd grr that the other hole is opening and closing- bloody annoying.
kitkat they should have mentioned the DCIS in the first place- so sorry that you were upset sad
Had a very lovely day - lunch and then trawling the charity shops where I bought a concrete dog and a v nice linen tunic.
Glad to hear that topsy's having a good holiday,despite Smurfs.

malteserzz Tue 20-Aug-13 18:29:45

The Jane McDonald programme was star treatment itv at 1230 it's dreadful !
Sounds a lovely day Mas

Gigondas Tue 20-Aug-13 19:20:45

Will check it out malt but agree gbbo is like the classiest comfort food of tv.

Big gig wants to see smurfs but sadly I fear my back may never ever not be up to cinema seats yet. So have promised her home cinema with popcorn at weekend . Just need to see what is on sky and duck pigeons pursuing me with her wrath against Murdoch . they tend to have a good selection so am trying to get her into the classics. Is 5 too young for bedknobs and broom sticks.

am feeling happy as only needed one extra pain tab today. unfortunately tho the nerve pain in my left arm is worse and pretty sore and it doesn't touch that.

Kurri I do feel for you as it's a different and very draining kind of pain.

Right better try to wrestle big gig to bed so can get settled in for gbbo.

PictureThis Tue 20-Aug-13 20:36:08

Hello all, lovely new thread. Having a bit of a down day today for no reason other than feeling a bit frightened and fed up but cheering myself up with GBBO, followed by The Midwives.

malteserzz Tue 20-Aug-13 21:32:29

Really enjoyed gbbo fancy cake now! Had pointless argument with ds in the middle though, both ended up in tears but we've made up now. Dh only just got home so been a bit of a long day.
Not seen bedbobs and broomsticks for years!
Picture sorry you're down, cup of tea or wine may help ?
More classy tv viewing here, don't tell the bride grin

amberlight Tue 20-Aug-13 21:34:32

Marking my place....evening all....

PictureThis Tue 20-Aug-13 21:45:28

cup of tea and a piece of chocolatecake Malt

kitkat1967 Tue 20-Aug-13 23:00:29

grrr.... DH spent all evening taking apart and cleaning out washing machine. put it back together and same problem - had so thought it would work!!
New one ordered out of desperation as cannot be without a washing mahine blush - options limited by requirement for swift'ish delivery, still got to hang on until Friday though sad.

Malt - do you also watch Four Weddings - also high trash rating.

Shootingatpigeons Tue 20-Aug-13 23:34:19

Mummy and baby Pigeons watched Don't tell the bride, and Geordie Shore shock , but we talked about how awful they were so that's alright hmm picture this distraction with crap TV is good coping mechanism.

Should pack but still recovering from rage when discovered ipod, amazon chargers and all my earphones had all disappeared, suspect "mum doesn't need them as we are more cool" and "I work so have right to nick them" syndrome.

jchocchip Wed 21-Aug-13 00:26:00

Marking place - have mammogram in afternoon head in sand and fingers in ears humming lalalal. Will be back after! Nighty night

Gigondas Wed 21-Aug-13 06:50:14

brew For jchoc - bum on paranoia box and holding your hand for appt later.

Grr about missing bits pigeons but suspect you are right- dss was a shocker for "borrowing" too. But you can pick stuff up at air port. Have a fab time xx.

Kitkat that's annoying about washing machine. Ours in constant use so would also miss it for even a few days.

Picture hope you are feeling brighter today.

Bit tired as mini gig up in night and then I was finding it tricky to find a comfy position so need brew as sleepy.

Got lots of nice food orders coming today so going to sit in garden , maybe have little walk and wait to scoffsee what I ordered.

amberlight Wed 21-Aug-13 07:26:23

Jchoc, bum firmly on paranoia box. Let us know what's what?

brew for you, Gigs. What sort of food?

Morning all. Plenty of brew all round for those feeling eek today/coping with side effects.

Gigondas Wed 21-Aug-13 07:30:25

Supermarket delivery plus fancy online deli that does nice cheeses, meats and Italian ice cream grin. Will share later on trolley.

Forgot to say that I am pleased that seems to be some action from your ds uni. Just not very helpful that got to point it did (disgraceful really).

will be holding your hand too jchoc
Swimming later and I hope to get some work done.
Lovely friend yesterday was telling me about her FIL's funeral in which her eldest dd and husband (both very accomplished musicians) played Abide with Me on their trumpets -I adore brass and felt myself welling up at the thought.
Italian ice cream delivery sounds yum gig - is there pistachio ?

malteserzz Wed 21-Aug-13 08:49:42

Morning all
Good luck Jchoc will be thinking of you
Have been waking and sleeping all night, just dreamt about watching cruise ships sail past and wishing I was on them hmm feel all fuddled now
This day last cycle I spent all day crying so am doing better anyway
Mas enjoy the swimming
Gigs food sounds yum
Tea welcome amber thank you

Shootingatpigeons Wed 21-Aug-13 09:10:27

jchoc good luck for later, my bum on paranoia box

gigs look forward to catching up. Save some goodies, or we can get more .....

See you all then, behave until I get back

Gigondas Wed 21-Aug-13 09:23:03

Malt- can I make a suggestion that helps me when I get down and feeling weak?

I have a list of all stuff I want to do but can't. So starts with simple stuff (eg trip to coffee shop etc) then builds up to gifts, treats and trips (so I have trip to Paris tesco and want Hol in Italy).

You could try it as a distraction - I bet looking at cruises would help chemo.

malteserzz Wed 21-Aug-13 09:36:22

That is a good idea gigs smile

kitkat1967 Wed 21-Aug-13 10:33:41

help ladies - just had an omg moment as onc has called me. He said he spent a long time reviewing my original and new mri's and doesn't see much change but thinks that most of the area is actually DCIS and the actual cancerous part may be very small. So he has discussed with surgeon and they have decided to stop chemo (yippee) and have mx next Friday as they see no further benefit in continuing chemo.
If surgery reveals that there is more than expected cancerous parts then I may have to have the other 3 chemo's but most likely it will be just rads and tamoxifen.

SO..... whilst I am delighted not to have chemo tomorrow I am nervous of any risks of this approach (I asked and he said it is fine) and also the thought of re-starting chemo after a break is hideous but still I guess that's out of my control.

All very wierd as until yesterday DCIS was not mentioned and now it seems to be most of the lump - all very odd!! No-one home here to discuss with.

Does mean I can enjoy the bank holiday weekend smile.

malteserzz Wed 21-Aug-13 10:40:22

Gosh Kitkat you must be reeling from the news ! What a shock. How come they didn't realise before now that it is mainly dcis ?Or is it just that the lump has shrunk so much ? No chemo sounds great news though !
Have a virtual cuppa from me x

well blimey ! that does sound v good news indeed smile - def. enjoy the bank hol !

reallyreallyworried Wed 21-Aug-13 10:53:41

Hi,

So not quite two weeks into Breast Cancer diagnosis and feeling, in a kind of limbo!!

I am waiting for a date for surgery. I know different areas have different time scales, but can any of you give me an idea of how long it usually takes to get a date through. I was going to contact my breast care nurse, but shes on leave this week.

Having read through some of your posts I can see how tough this journey can be. But right now I just want to have the surgery and get started on dealing with this.

Sorry for sounding pathetic, I know lots of you are going through MUCH worse things at the moment. Hope you all have a positive day.

Xx

kitkat1967 Wed 21-Aug-13 10:55:10

Malt - I don't know what is going on so completely in a spin - the DCIS was only first mentioned yesterday so it's all new to me. I think originally they got a report on the MRI but this time they looked at the scans themselves. If you remember back the histology was always a bit odd with it showing as very un-aggressive and them being a bit puzzled as to why such a massive lump would not have spread.

Much as I hate the chemo I'm nervous of not getting a full course (Amber is my lady for that info I guess) and also I will be devastated to have to re-start after a break as I am psyched up to do it now.

Just got confirmation of surgeon appt for Tues.

Am in a complete tizz...........

KurriKurri Wed 21-Aug-13 10:58:05

Wow - Kitkat, you have had a lot to get your head round in a very short time! - their conclusions sound like good news to me, and obviously once they have removed stuff and analysed it thoroughly they will know whether more chemo is necessary.

Actually I think its quite good that your op is coming up fairly soon - it means you will be busy arranging things and getting ready and won;t have to much time to get anxious smile

I was only in overnight with my MX (although of course you would be able to stay longer if you wanted to, - I asked to come out swiftly because it was DD's school prom and I desperately wanted to see her in her prom frock all dressed up) You'll probably come home with drains in, so movement is a bit restricted until they come out (district nurse will visit daily if it is still the same system as when I had mine).

Anyway - loads of luck and love - we'll all be thinking of you smile

jchoc - lots of good vibes for your mammo xx

Malt - I second Gig's suggestion - plan something to look forward to when you feel better, little things for during chemo, - nice trips, a DVd you;ve always wanted to watch, a good book to curl up with, --- and something a bit more wow! for when you;ve finished treatment smile

Gigs - hope you are feeling Ok today, and not too sore. Thanks for your kind words about my pain it meant a lot because people don;t actually understand, partly because its invisible and partly because unless you;ve had it you don;t know what it feels like. It has been really getting me down this week - I having a bad patch of pain, and next week I have a v. busy week doing an art exhibition - so three days of full on interacting with general public and small talk, and wearing a sunny expression grin - not the best when your head is hurting a lot!

las night I had a meeting to go to, - a friend was giving me a lift home, and I'd told her my head was v.sore, but after the meeting finished she buggered about having long conversations with people and faffing around doing things and I was thinking 'I just want to go home' - and of course it wasn't deliberate, she just doesn't get it, - and why should she really? - DH doesn't get it and he lives with me!

Oops sorry - bit of a moan there, - but if I do it on here, I don't do it in RL, - feel free to ignore me grin

Waving to all, - enjoy your swim MAS. - Abide with me is a real tear jerker, - we had I Vow to Thee my Country at Dad's funeral - that's pretty emotional too!

kitkat1967 Wed 21-Aug-13 11:02:00

Hi worried - so you feel in limbo. I can't help with timings as I am having my treatment privately and everything has moved quickly (and it often does on NHS too I think). Are you having surgery first do you know?
We are all agreed that waiting is always the worst part so hopefully you will here soon - is there anyone you an chase? Poor Malt had to chase continually for her chemo to get started so sometimes you have to be persistant.

KurriKurri Wed 21-Aug-13 11:06:09

x=posted with Reallyworried, - I had my MX five years ago, and it was a month from DX to operation in my hospital at that time. I was told that a few weeks either way doesn't make an awful lot of difference, and I know one of our ladies who used to post had lots of delay because it was v.bad weather and her op. kept getting cancelled.

Having said that, when it is you waiting fro the op, a days wait seems like forever, and if it is making you anxious, I would definitely ring a BCN - (doesn't have to be your particular one - just ring the communal BCN number and one of them will talk to you) that's what she's there for, to talk you through anxieties, and to chase up appointments - and they can make things happen and speed stuff up. IME during this process, you have to be a bit prepared to badger and fight your corner, and often they can miraculously find a place for you sooner than they first said.

And things do slip though the system sometimes and appointments go missing - so always chase it up (I know its a bugger and the last thing you want to have to do when you are dealing with so much already, but it might well yield results for you)

kitkat1967 Wed 21-Aug-13 11:07:13

thanks KK - provisional Op date is friday 30th and kids go back to school on tues 3rd and weds 4th so would be nice to be home before then. All so wierd as not even discussed the surgery so no idea but I do understand that it is relatively straightforward. Will be in posh hospital so not planning on rushing home wink

Apologies to everyone else as I seem to be having an all about me day blush

malteserzz Wed 21-Aug-13 11:08:43

Really as Kitkat says I had quite a wait, I was dx 1st may, had lumpectomy on 4th June and started chemo on 25th July. If you're worried then ring your bcn someone must be covering for her ? I haven't even got a named one, just have a number to ring and talk to whoever answers !
I was shocked at the waiting as I thought with cancer things would happen quickly
Kurri bless you must be hard when the pain is not visible but you'd hope people would be a bit more understanding

KurriKurri Wed 21-Aug-13 11:11:49

kitkat - I think you are wise to stay in and get as much rest as possible, and hopefully the drains will be out before you leave.
I meant to say, they will give you exercises to do after the op,- they make a real difference to healing and movement afterwards, so its worth sticking to them and doing them religiously several times a day (fortunately they don't take too long to do, so not too taxing)

Gigondas Wed 21-Aug-13 11:27:38

Kitkat- that is a lot to get your head round but it sounds positive. Also they double check everything so wouldn't recommend if not sure. I would stay in for as long as you need but even in private hospital there comes a point when you want home food and bed so that is usually my flag that I am on the mend. Glad date soon for surgery tho.

Reallyworried- I echo chasing the nurses as will do no harm (and you feel like you are doing something). I think waiting for first treatment the pits.

Poor you kurri - last night would have driven me mad and can see how next week is a worry. It's such an insidious naggy pain (it was a new spot on my left leg that op flared up that was bothering me last night). I do rate Nortrytptiline tho as I noticed immediately when I was off it and it doesn't seem to have hangover effect next day.

First food delivery arrived so chocolate and brioche on trolley. going to stroll to cafe at end of road for lunch as cleaner here. She is we meaning but I find it really annoying when have to have lunch with her in kitchen as always seems to be where you want to go. First world problem but I cannot be doing with moving an ironing board when I want a brew.

reallyreallyworried Wed 21-Aug-13 12:00:28

Thanks for the advice. I will give them a call. Xx

kitkat1967 Wed 21-Aug-13 12:32:59

question for you old hands - if my last chemo was 3 weeks ago when will my hair stop falling out and when willit start growing back?

thanks.

reallyworried - my surgery was I think about a bit over 2 weeks from diagnosis,it seems tio vary,depending on how busy they are.
Definitely contact the bcns- any will do -doesn't need to be the one you have already seen.
Am feeling v anxious about GCSE results- anxiety dream last night -amnd thing on BBC news about a lot of kids not getting the grades they expect - suppose it's the same every year. T seems outwardly calm,but must be feeling nervous.

malteserzz Wed 21-Aug-13 13:33:01

I try and be out when my cleaners come gigs I always feel guilty !
Mas fingers crossed for good results for your boy tomorrow
Kitkat must be exciting thinking of hair regrowth ! Have you got your head around things yet ?

Just got today to get through then dh is off till Tuesday smile have tentative plans for a night or 2 away somewhere

KurriKurri Wed 21-Aug-13 13:37:10

Kitkat - I think again it probably varies from person to person, but IIRC I started getting some head fluff about four -five weeks after last chemo, I know I finished chemo at the end of april, and I have a photo taken at the end of June in which you wouldn't know I'd had chemo - it just looked like a short hairdo, but while I was a having radiotherapy in May I was still quite bald. At three weeks after you will still have the chemo in your system I think but I think you'll start seeing a bit of hair quite soon smile

MAS - I'm sure my kids exam results were far more stressful for me than for them! Good luck to T. - I'm sure he will be fine. smile

KurriKurri Wed 21-Aug-13 13:44:12

Oh and in other news - the bit that attaches my hose to the outside tap just snapped in half, so I had to cart about fifty watering cans of water up and down the garden (slight exaggeration) as I planted a load of stuff out yesterday and weather here is v. hot. Grrr.

oh that's pesky kk

kitkat1967 Wed 21-Aug-13 15:10:51

things are moving fast here - I now have my Op confirmed as 1:30pm next Friday. Will see surgeon the Tuesday before and I guess a nurse for pre-op stuff on the weds or thurs.
I think it has sunk in now but really need the Tuesday appt to get to the bottom of it all and understand a bit more.

My cleaners also came today and in my usual life I would be at work - these days I try to be out as I always think I look lazy sat here with someone doing all the work.

PictureThis Wed 21-Aug-13 15:46:56

KitKat if it's DCIS then that is fantastic news. I was diagnosed with DCIS on 30th April this year but it was multifocal so my Breast Surgeon wanted to do a mastectomy and she felt there was probably some microinvasion too. Well she was bang on the money, there was some microinvasion that hadn't shown up on mammogram or ultrasound.(11mm stage 2 invasive BC) The mastectomy and node biopsy (10 nodes removed) itself which I had on the 23 May was absolutely fine, my drain stayed in for 8 days and I was driving within 3 weeks. I'm still numb across the mastectomy scar and on my back near my armpit just above my bra, but the sensation is returning in my armpit and above the mastectomy scar. I elected to wait for reconstruction as mini mini Pic was 8 months old at the time of my surgery and now at just 1 still needs hauling about, so I'm delaying mine until year after next all being well.

notJenkins Wed 21-Aug-13 15:52:49

Just checking in from a field in mid Wales this time. The camping trip had turned into something similar up those Japanese torture game shows with no sleep for2 nights.
Last night we lay awake with the wind howling and rattling the awning as we were right ins cliff top. The previous night we had a vomiting child which was not pretty in the dark I the awning.
We are now at a lovely sight with lovely toilets and showers so a bit of camping luxury to end our trip on. Wifi too so both dc are both glued to their iPads giving us some peace.
I need at least a month to recover from this

malteserzz Wed 21-Aug-13 16:15:25

I hope you had wine to get through that NotJ doesn't sound much fun !

Yay for things moving quickly Kitkat, do you feel they gave you chemo unnecessarily though ?

Any tips for horrid tasting mouth with chemo ? Sucking a lot of sweets which is not very healthy !

kitkat1967 Wed 21-Aug-13 16:50:46

thanks Picture - did you get chemo after your Op? I def have some stage 2 but now it seems that may just be a small part of a very big section of DCIS.

Malt - so far I believe they think chemo was necessary but maybe not necessary to do any more. I have never heard of anyone having 3 cycles so am very puzzled but to fair right at the outset the onc did say that chemo was 'belt and braces' and hormone treatment would be my main thing. I am trying not to panic about the possibility of missing some vital treatment.

kitkat1967 Wed 21-Aug-13 16:51:34

Malt - sherbert lemons was my thing so I guess that's not much help grin.

malteserzz Wed 21-Aug-13 16:58:24

I've had sherbet lemons today smile
Hope you didn't mind me saying that just that it does seem strange

Ds has a girl playing round who has just done a double take at my hair bless her, the boys haven't noticed !

kitkat1967 Wed 21-Aug-13 17:15:57

oooo - ignore that - all I know is that something is grade 2 (not stage 2).

KurriKurri Wed 21-Aug-13 17:20:55

malt - fresh pineapple supposed to be good (helps with general mouth health too apparently)

NJ - sounds like a bit of a rough night! - part of the joys of camping grin - glad you have a bit of luxury for your last night.

Reallyworried - hope you managed to get to talk to someone at the hospital today.

I am addicted to sugar free chewing gum, if that's any help- good for your teeth too.
Think I'm a bit obsessed about my swimming now - the urge to swim further each time - today I did 50 lengths which seemed fairly easy in that it didn't feel too much like hard work (25m pool) I only stopped because I was dying for a wee.
nj enjoy the luxury camping !

malteserzz Wed 21-Aug-13 18:44:59

Pineapple and sugar free gum on the shopping list thank you
Well done for the swimming Mas smile
Just booked a night away in Stratford on Friday night, something to look forward to. And dh is off work now till Tuesday then the kids go back to school on Thursday, peace woo hoo !

PictureThis Wed 21-Aug-13 18:45:14

Yes KitKat I'm having my 3rd of 8 doses of chemo next week, with my 5th dose I start Herceptin, then in January it's back to theatre for full node clearance followed by 4 weeks radiotherapy and Tamoxifen (if I don't have my ovaries removed.) The grading is how fast the cells are growing, with Grade 3 being the most aggressive.

Malt I second pineapple, I have found it to be the best thing for metal mouth.

Gigondas Wed 21-Aug-13 19:19:34

Nj - you have cured me of camping envy (was meant to be at flashy sure in dorset with my mum) - sick is grim.

absolutely done in and did have long nap so hope I sleep tonight. Got some nice fresh pasta and fish then fancy ice cream for dinner grin. Roll on celebrity masterchef.

No advice on mouth taste as it wasn't such an issue for me.

kitkat1967 Wed 21-Aug-13 20:19:36

wow Picture - you're getting the full works.

On my hols i met the mum of one of DDs friends and she got diganosed when pg and had a mx at 26 weeks. Then they delivered the baby at 34 weeks and she started chemo the next day. Following testing she then had the other boob and her ovaries removed. 9 years on she has opted not to have any reconstruction and she looked really fab. She had a fairly slim build and if you didn't know you would not have thought twice about her figure - very model'esc i thought.

malteserzz Wed 21-Aug-13 22:24:18

I'm having node clearance too, how many do they take ? Presume after that they tell you how many were cancerous. Think I've been thinking about chemo and haven't really thought that far ahead yet

Night all hope everyone sleeps well, I'm watching Bridget jones till I fall asleep, will get to the end no doubt

jchocchip Wed 21-Aug-13 23:21:06

Hi peeps thanks for all the paranoia sitting. Had squashy mammo and results within 4 weeks but they then said surgeon would prob have them by my appt on 9th. sad but there won't really be any answer w/o biopsy. Probably nothing anyway. Naproxen for foot is making me dizzy but foot much improved.
Glad you are home gigs envy at camping and flying away nj and pigeons. Topsy having to watch a blue film grin
Mas envy at swimming too. Let's all have cake for a midnight snack. Because we can!

Gigondas Thu 22-Aug-13 07:39:59

Glad it went ok jchoc- will keep fingers crossed til full results. Hope all slept well- I did til kids woke at 4.45hmm.

Good luck for t and all gcse people today. Better gi help dh who has lost his tickets for test match today.

well done jchoc - fingers crossed for good results.
Hope Mr gig finds his tickets !
Anxty waiting for T's results this morning- will be distracted by blood test.
HAPPY BIRTHDAY AMBER !!!!
I see on fb that pigeons had an alarming flight - hope she has recovered and is calm and sipping a margarita

jchocchip Thu 22-Aug-13 08:39:57

Fingers crossed for the boy. Dd2 says she is going in, she took some a year early, next year is her gcse year proper. Mrgigs think back when you last had them and visualise!

ooh,good luck to junior jchoc too then !
Mr gig must pray to St Anthony

malteserzz Thu 22-Aug-13 08:53:57

Morning all
Amber have a lovely birthday smile
Good luck for the gcse results, im waiting to hear how my niece gets on
Hope mr gigs finds his tickets !

Sent dh downstairs to get me some breakfast seeing as hes off work. Think wig is definitely going to be making an appearance today hair nearly gone don't think I can get away with it any more

amberlight Thu 22-Aug-13 08:56:31

<puts out birthday cake on the trolley> smile

Grr re original hair, Malt. But new hair looks fab on you.

malteserzz Thu 22-Aug-13 09:03:56

Thanks amber
Are you doing anything nice today to celebrate ?

kitkat1967 Thu 22-Aug-13 09:14:20

morning all.
I feel very wierd today (should have been heading off for chemo). Had a fab night's sleep and have woken up with no nausea - just shows how much of it was in my head.
On the downside I am still disturbed about the change in tack but not seeing consultant until Tuesday so no answers for a while. Also got no appts planned with onc so feel a bit lost really.

Amber - do you have any info on only having 3 chemo cycles - I've even risked some googling but cannot find anything similar.

But most importantly the new washing machine will be delivered between 2 and 4pm grin - will spend the rest of the afternoon/evening happily working through all the wash baskets!!

KurriKurri Thu 22-Aug-13 09:23:26

Happy Birthday dear amber flowersbrewcakebiscuitwine Have a lovely day. x

Good luck T - I've got my fingers crossed for him MAS smile

Gigondas Thu 22-Aug-13 09:26:33

Happy birthday amber biscuitbrewthankswine

Tickets hadn't been sent but mr gigs got them from box office so is now sat on cafe having breakfast before play starts. Lets hope rain stops.

kitkat that's good you slept well but don't blame you for feeling unsettled.

Uniform shopping for big gig today .

kitkat1967 Thu 22-Aug-13 09:27:47

Happy Birthday Amber cake. Are you doing something nice today?

kitkat1967 Thu 22-Aug-13 09:31:48

Good luck with your shopping Gig - i quite enjoy uniform shopping smile.
We did shoes on Sunday and uniform quite early in the hols but guess i should do a check as Op will mean I won't be able to sort out any last minute emergencies.

Should I treat myself to some new pjs do you think........

malteserzz Thu 22-Aug-13 09:38:03

We've got all the uniform sorted, back a week today !
Kitkat definitely new pjs, front fastening ones. Do you need bras too ? And of course nice snacks, magazines, music etc to keep you occupied smile

kitkat1967 Thu 22-Aug-13 09:48:06

thanks Malt - i'm hoping that the BCN will be at appt on Tuesday as i have no info on Op and no idea what i need to do re bras etc. I'm assuming she'll be the one to help with that. I'm expecting to have to go back in to see her on Weds for pre-op stuff as that's what happened last time. I won't want to spend a fortune on underwear as the plan is to have the reconstruction in 6 months - or that was the plan - goodness knows what the plans are now hmm. I'm assuming I'm still getting the rads so can't have the recontruction immediately.

I'll have my own TV in my room and my Grey's Anatomy to work through, and I have a stack of books waiting so think that side is covered. On the other hand food and snacks does need to be considered ........

DS back to school on 3rd and DD on 4th. As Op is on 30th I'm assuming I'll be home but think I'll need DH off work for the first few days to them organised in the morning for me.

bcn will help with bras and whatnot kitkat - nice pyjamas will be cheering !
oh I feel quite sick with nerves..T will be off soon.

KurriKurri Thu 22-Aug-13 10:16:49

Kitkat - you'll be provided with a softie (pad to put in your bra) after surgery, and a few weeks later a proper weighted prosthesis. You can get mastectomy bras from M and S which cost the same as their regular bras. Nicola Jane is a good online company for mastectomy bras/swimwear - but they are a bit more expensive (although not outlandishly so, and I've found their stuff wears and washes well)

Just a piece of info which may or may not be relevant to you, and I hope you don't think I'm being a bit personal mentioning it! - I am waiting for a planned reconstruction, but if it is planned rather than done on the spot, they won't do it if you are overweight (which I am) because its a long op. and they wont take unecessary risks. - Not implying for a minute that you are over weight - obviously I have no idea! grin - but just thought I'd let you know so you can take that info on board if necessary. You don't have to be skinny thin, just not a fatty like me. When I say they won't do it, they will ask you to go away and lose weight before they do it.

Just thought I'd say, because its added a lot of waiting time to me getting reconstruction, and if I'd known beforehand it would have been helpful smile

amberlight Thu 22-Aug-13 10:28:34

Thank you, lovely ones.

Out with a friend for lunch, then out with family for a meal this evening smile

Three chemo cycles only? Usually the result of updated research coming in on particular types of bc, some of which show that chemo doesn't make a bit of difference for those particular types and circumstances....because the surgery etc is as effective. Chemo is a rough and nasty tool, so where teams don't have to use it, they won't. I'd ask for their scientific reasoning. They might be using the NHS Predict tool to calculate it all. It's online, if you wanted to be bold enough to bung in what you know. Google it with those words.

Gigondas Thu 22-Aug-13 10:31:19

Yes definitely to new pyjamas . Some straws and drinks good as you will feel thirsty after ga and also quite weak so straws help if dont want to lift head.

Wipes for face, face spray and lip balm are nice after.

Kurri - saw this thread and thought of you as I know you like a good wedding lunacy thread Here.

KurriKurri Thu 22-Aug-13 10:43:21

Gigs - I can't get the link to work - what's the title of the thread? <gets over excited grin>

Enjoy your lunch and evening out amber, sounds lovely smile

notJenkins Thu 22-Aug-13 10:45:52

Happy birthday amber !

kitkat1967 Thu 22-Aug-13 11:16:22

KK - thanks for the info but I'm OK on the weight front as scored in the 'normal' BMI range when they did the checks for my previous op.
So I don't need a mx bra before i go - am worried about having only a few days after seeing nurse to having surgery?
Actually I'm interested in the pockets someone (was it Topsy) was sewing into their own bras as I like a bit of sewing smile.

Amber - I do need to ask more info now (have mainly left them to it so far) - but right at the outset the onc did say for my histology he didn't think chemo would do much. So as I understand it they have done 3 cycles - there has been a small change to 1 part of the tumour but the majority of the lump is unchanged. They now believe it is mostly DCIS. I guess they will say that the advantage of doing the chemo first that they could monitor and watch reaction and therefore not continue if there is no benefit.
If Op reveals something they are concerned about I will get the other 3 cycles afterwards - I do hope not but I also need them to convince me that we are not skimping on some essential treatment (am sure they wouldn't but even so......).
And i guess some people have no chemo.

KurriKurri Thu 22-Aug-13 11:56:52

kitkat - I think you can buy sew in pockets from the Nicola Jane site (or probably and other site if you google mastectomy bras.

Or IIRC -John Lewis will sew a pocket into a bra or swimsuit for you fro about a fiver, and it used to be that your hospital would do you something like two bras and one swimsuit - but that may have changed since I had my op.

I have altered bras and swimsuits myself - and it isn't hard.
Another tip - I find bras with a widish strap are most comfortable - the prosthesis seems to make them dig into your shoulders a bit more than usual, so it spreads the load so to speak - you tend to need a bit more support than before grin

hope you didn't mind me mentioning the weight thing, - and good to know you are fine on that front, but it was something that I didn't know about beforehand, so thought I'd pass it on smile

amberlight Thu 22-Aug-13 12:11:46

Yes, chemo carries its own risk, because of the risk of infection or long term side effects. So it's never entered into lightly.

kitkat1967 Thu 22-Aug-13 12:15:21

KK - no probs that you mentioned weight. I'm also hoping that my small boobs will make the whole prosthesis thing easier to manage. Am also assuming it makes reconstruction easier too as less to have to create wink. As I only found out yesterday (from onc) that I'm having a mx I know nothing!

It's all go here - just got date and time for my pre-op assessment - also on Tuesday.

I had no chemo first time round - am not sure whether if I had that it would have prevented secondaries in my case- as onc says,everyone's cancer is different and so much depends on your individual immunities and genetics.
We are a bit confused by T's exam results- really hoping they will be ok enough for A levels - Bs and Cs in the relevant and important subjects- but v bad in drama-which is weird as he is good at the performing bits- he said he knew the written bit was not good smile He is a bit disappointed I think but seems cheery enough.

kitkat1967 Thu 22-Aug-13 14:17:38

Hi MAS - do you need to go into the school to get them to explain things? the Bs and Cs sound good though. Was he planning to take drama A level?

KurriKurri Thu 22-Aug-13 14:38:34

MAS - B's and C's sound good - and as long as he can go on to do what he wants at A level, that's all that matters. I remember my DS didn't do well in drama exam, and was very disappointed - did brilliantly on the practical bit, but fell down on the written part. - He went on to do two drama subjects at A level and did very well in them - so I think the drama GCSE is definitely a tricky one - there's a high weighting on the written stuff.

Neither of mine did phenomenally well at GCSE, but both went on to do very well in their A levels - whereas some of their friends who got all A stars at GCSE didn't do so well on the A levels, so I don't think you can read to much into GCSE results - they are still so young when they do them!

aw thanks kitkat and kk - have been fretting- no,drama wasn't his intended A level,which is a relief. Dh has been looking at the college website and seems to think that it should be ok- T is going to register at college on Tuesday so they'll discuss it then-meanwhile we'll talk him through it all and sound out any contingency plans smile

notJenkins Thu 22-Aug-13 15:41:04

Defiantly new pjs !

We have gone from camping hell to heaven. The sun is shining and the children have spent hours in the lake. All my washing done and dried so I am most content. Vodka later to finish off.

Enjoy the shopping gigs I have the whole school shoes hell to look forward to next week.

kitkat1967 Thu 22-Aug-13 15:46:38

NJ - the new camping photos look fab - I like the change from shivering in onesies to swimming cossies!!

MAS - I see you are changing to a college - I guess that makes it a bit more complicated then staying in the same school. Shame you have to wait until Tuesday to find out but it sounds like he will be OK. Is he happy enough to go out and celebrate?

malteserzz Thu 22-Aug-13 17:12:53

Mas well done to T seems so much pressure on them at at early age,fingers crossed for college

Wore my wig all day today and do feel bit more myself in it because lately my hair has looked so rubbish. Ds friend asked me if I'd had my hair done grin friends 4 year old just looked at me for a second but said nothing about it. Its just a bit more bouffanty than my own hair which takes a bit of getting used to. Have taken it off now to cook the tea !

am glad that wig is cheering malt !
Will be taking T out to celebrate with us tomorrow as it's our wedding anniversary - a multi purpose celebration ! He seems quite ok...

kitkat1967 Thu 22-Aug-13 17:39:17

good news on the wig wearing Malt and also very wise to take it off to cook - I gather they can easily melt/singe. Are you going to try any scarves/hats to wear round the house if your hair goes completely.

Am a bit grrr at the mo as still waiting for my washing machine - got a delivery slot of 2 to 6pm so not late but really.... - all that drying time lost this afternoon!!

Also BCN rang as she saw my name on list for next Friday and was shocked. She said i was down for mx with tissue expanders and she is going to send me a leaflet about tissue expaander surgery as i obviously have no info. We also chatted about the abandonded chemo and she said in the past there has been a lot of over treatment and these days the trend is to tailor the treatment as specifically as possible. She also confirmed that they would not take any risks.
Think she felt a bit sorry for me having been booked in with no consultation although it will all happen next week.

malteserzz Thu 22-Aug-13 17:48:00

Yes they told me not to open the oven with it on ! Have ordered a turban thing from amazon because if the doorbell went now I would want something to fling on before opening the door ! It will all go there is hardly anything left I still can't bring myself to shave it though
Hope the washing machine turns up Kitkat and your bcn seems very on the ball smile
Fresh pineapple been lovely today and metal mouth feels much better
Thinking we haven't heard from ruby for a while hope she is just busy and getting on with life smile

KurriKurri Thu 22-Aug-13 18:14:05

Can I come on and boast? <proud Mum alert>

My DS has just been told by the National head of his company (he works for a company which provides education services to prisons) that he has won an award. 40 people were nominated all round the country, and four people won awards, he has to go down to London to receive it and attend a big dinner thing.
The letter from the head of company said it was for his dedication and caring to those with learning difficulties, and his innovative and enthusiastic approach to teaching and excellent results.

So I am very proud of him, - this is the boy who was told by his school he was lazy and would never get anywhere (he's actually got dyslexia, and had virtually no support from his school)

Happy anniversary for tomorrow MAS smile

I was also wondering about Ruby - hope you are OK lovely, and just on holiday or busy atm.

kitkat1967 Thu 22-Aug-13 19:41:22

that's great about your DS KK - feel free to boast.

Finally got my washing machine and am on the second load grin blush grin

Malt - my BCN was very apologetic as she said she had only just realised i was on the list - I just laughed and said not to worry as I only just found out myself!!

malteserzz Thu 22-Aug-13 19:51:30

Kurri that is brilliant you're right to be proud smile
Kitkat glad youre getting the washing done! Wish I had that kind of support, I never see the same bcn and whilst they are all nice they don't really do a lot. Have no contact with them at all now as chemo is at a different hospital.
Looking forward to new series of location location tonight then celebrity big brother

KurriKurri Thu 22-Aug-13 20:03:15

Just realised I made a mistake in my previous post - it was 400 nominations he was chosen from, not 40 blush

Glad your washing machine has come kitkat - I hate being without mine (unfortunately I have one of the 'keeps breaking down variety' so it goes out of action fairly regularly!)

I'm also going to watch CBB - although I don't usually know who any of the 'celebrities' are grin

brilliant about your ds kk - be very proud indeed.
Hooray for washing machine kitkat !

Gigondas Thu 22-Aug-13 21:39:11

Popping in to say hi - well done t on results . Very good of ds kurri - winewine really good for him.
malt- glad you are getting used to wig.

Had good day- managed a walk for uniform which was brill and sit in playground with kids which was so nice.

malteserzz Thu 22-Aug-13 22:19:50

Glad you've had a good day gigs

Kurri I don't know many of these so called celebrities !

kitkat1967 Thu 22-Aug-13 22:23:10

Hi Gig - glad you had a nice day. Surviving the walking required to get school uniform is always an achievement.

I am contentedly working my way through the washing - will be even happier tomorrow when I can dry on the line as well.

LadyBeagleEyes Thu 22-Aug-13 23:49:15

Well back from my darling neices wedding, and waiting to hear when I go in for chemo.
Ds is away to uni on the 13th so I've got to arrange all his stuff so I can't accept any treatment until then.
I don't know if I'll be grateful he's not here, though it's been the day I've been dreading since he got his results.
Don't get me wrong, I'm so proud but I'll miss him to bits, and as I'm ill in a funny way, I'm glad he won't be here.
Life is shit, that's all I can say.

malteserzz Fri 23-Aug-13 05:19:36

It is shit LBE I agree but we will help you through the chemo. I was absolutely terrified of it but I'm on my 2nd cycle and touch wood so far I've been fine, no sickness or nausea just tiredness and a few days of feeling groggy
How far away is ds going to uni will he come home much ?

Quite pleased to have woken at 5 the last few nights the first time I've woken up has been around 12! Will try and get some more zzzzzzs

Gigondas Fri 23-Aug-13 07:03:00

Rest up malt. I missed Cbb so as guru on all things tv tell me who is in it.

Lbe -no point pretending it isn't shit so vent here. I think you need to grieve for life you don't have before you move on ( topsy old me this bad was right -I didn't think I would get out of pit of despair but I did eventually). However , doing something about it ( chemo) helps . I agree with malt that I feared chemo but reality wasn't do bad.

Bit tired as couldn't sleep so watched tv til 12.30 and as I was tired started to feel anxious/down . But I did sleep soundly til kids case in after 6. Getting stitches out today at hospital .

Issue here is mini gig obsessed with gangnam style . Keeps asking to see video and trying to do with the dance. Kitkat be prepared for what happens when you are away in hospital.

Haven't forgotten about peppa pig tee shirt pic but was trying to get one with mini kissing it .

brew For all. Mas happy anniversary. Amber hope you had a lovely birthday meal.

foofooyeah Fri 23-Aug-13 08:01:54

Morning, I too went uniform shopping but cleverly took my lovely Mum who paid for it!

Biopsy results today - this is my second one to confirm if second 'bits' seen on mammogram are cancer. Assuming they are. I have a date for surgery but worried this may change as treatment planned will probably change (was a wle will prob now be mx) and I just want it over and done with.

thanks gig - good luck with stitches and keeping mini away from gangnam style smile
ladybeagle am sure once you've started it'll seem less daunting but still,it's pretty crappy to have to go through it.
Darling dh has just given me some sweet garnet earring for anniv...he has never chosen anything on his own in the way of jewellery so am very impressed and very touched

cross posted with foofoo - loads of good luck today,fingers crossed

jchocchip Fri 23-Aug-13 08:37:47

Yes everything crossed here for foofoo's results too.
I slept well. May have had something to do with dh on sofs grin

malteserzz Fri 23-Aug-13 08:39:56

Best of luck foo foo

Gigs the ones I can remember are carol mcgiffin, Ron Atkinson, Louis spence, Lauren ( the child prodigy antiques expert who is now a woman) Mario from TOWIE, Charlotte from geordie shore, vicky entwistle and Bruce jones from corrie. There's a couple Id never heard of Courtney somebody and someone who was on Dublin housewives or something
Think Louis will be entertaining

Off to Stratford today smile

malteserzz Fri 23-Aug-13 08:40:51

Might try that Jchoc !
Mas happy anniversary and yay to earrings from lovely dh smile

KurriKurri Fri 23-Aug-13 09:59:43

Morning all Happy anniversary MAS, - how lovely that DH bought you earrings,- and enjoy your meal out tonight smile

LBE - it is shit, utterly shit, - this is good place to vent because sometimes you have to pin your cheerful face on in RL, you need somewhere to have a release. Children leaving home is a tough time at the best of times, - my DD started uni just as was about to start chemo, and on the whole I found it better that she was away, - we set up skype so that she could talk to me everyday if she wanted, but also so she could see me and know I was OK. Do tell your chemo team that your DS is off to uni, because they like to take all your life events into account so that they know the things you may be struggling with emotionally at any time.

Foofoo - fingers crossed for good results, but more info. means more carefully targetted treatment, and as you say it will be good to get this appointment over with - they are always anxiety making.

Gig -grin at mini gig and Gangnam style - could be worse, she could have become obsessed with 'Blurred Lines' grin

malt - I ended up only watching half of CBB - because DD and I decided to watch a documentary about a man who pretended to be a boy who had gone missing years previously and infiltrated his family. A very very odd story!
So I only saw up to the woman from Dublin Housewives (Who???????) going in. I was trying to tell DD who was in it, I said someone from Five who's name I've forgotten, she said 'If his name wasn't Ritchie, he will be one of the losers who shuffled about at the back singing the doo-wops' grin

jchoc - glad you had a good nights sleep, - does your DH snore? (mine does, very very loudly hmm)

kitkat1967 Fri 23-Aug-13 10:12:42

morning all - washing in the machine and out on the line so the catch up is in progress.

All well here - I'm still on a 'no chemo high' but now rather oddly I feel that I've not really been through the process properly - doesn't feel like I belong in the post-chemo club - like I haven't really earned my stripes - if that makes any sense? or am I just looney???

CBB (and indeed BB) is one programme that I never watch so cannot join in I'm afraid.

KurriKurri Fri 23-Aug-13 10:20:11

kitkat my lovely, - there are no stripes to earn, there is just treatment and other treatment. That feeling of abandonment and weirdness on finishing treatment is very common and a recognised 'thing' - it will make you feel odd, but hopefully it will feel a bit better once you move on to the next bit of your treatment.
The only thing that matters is getting what your team feel you need for your recovery, - it's irrelevant what treatment you have compared to everyone else.

I have an article bookmarked somewhere that I periodically post (as we get new people who might not have seen it before) called 'after the treatment finishes' - it's longish (there are lots of topics to click on) but it has a lot of really good insights into the emotions surrounding all aspect of the cancer/treatment process. I'll just go and look for it and give you a link. It was an article recommended at a breast cancer care meeting I went to - so its sensible not wacky!

KurriKurri Fri 23-Aug-13 10:22:09

ta da!

I know there's 29 bullet point headings to click on - but you can cherry pick what you feel is relevant to you atm smile

kitkat1967 Fri 23-Aug-13 10:24:39

thanks KK. I'll have a read of it. Next week I'll be occupied preparing for my surgery so won't have much time to dwell on things smile. I just feel like a cheat at the moment.

malteserzz Fri 23-Aug-13 10:29:27

Kitkat you're bound to feel weird, you had your head around your treatment and how long it would all take and now it's all changed. Have you got any nice plans for the bank holiday weekend to take your mind off things a bit ?

kitkat1967 Fri 23-Aug-13 10:58:27

HI Malt - Dh has an annual beer festival event tomorrow which he had thought he would to miss (basically the highlight of his year) so that's now back on for him. Other than that no plans as we had thought that I would be conked out all weekend. We were discussing it last night though so will def go somewhere on Sunday or Monday as I do feel really well now and the weather forecast is good.

Are you wearing your wig again today? I washed my hair yesterday and gave it really good comb - lots came out but still OK with my hair band on. I'm hoping it will stop coming out soon and that it won't be too long before i get some new growth as the patches on top are more bald than thin now!!

reallyreallyworried Fri 23-Aug-13 16:10:36

Hi all,

Just wanted to say thanks for the advice. Finally received a call from my doc today, telling me my surgery has been booked in for the 3rd of Sept and have I decided what I would like done??? That's the bit that threw me, I thought they told you what was best for you!

Anyway I have appointment to go and chat things through with her next Friday. Then before I know it the surgery will be done! (hopefully)

So I feel a bit nervous and apprehensive, but at least I can start to fight this.

Sending hugs and positive thoughts to you all. I wish I could say more to each of you, the more I read the more I see what an amazing group of people you are. Wish I could say more to help you all thanks wine

Xxx

rw a chat will be good to sort out what's best for you,surgery wise -will be thinking of you on 3rd and sending lots of good vibes smile
kitkat don't be silly- you are well and truly included in this group and have certainly earned any stripes..whatever treatment you have or don't have,you have still had cancer..be kind to yourself xxxx

I am a complete idiot and have lost one of my beautiful earrings -only had them a few hours- am heartbroken- think it's somewhere in the hospital- have rung chemo unit and the security man. poo

malteserzz Fri 23-Aug-13 17:47:39

Just saying hi from my posh hotel room smile had lovely day in Stratford then been chilling in the room whilst dh and ds swam
Going for dinner in a bit
Lovely to have a change of scenery !
Didn't wear the wig today Kitkat ( good job on motor boat I think !) but will tonight

malteserzz Fri 23-Aug-13 17:49:13

Mas I'm gutted for you about the earring I do hope it turns up xx

KurriKurri Fri 23-Aug-13 18:31:27

Oh MAS - I hope your ear ring turns up, what a shame. Is it St Anthony who needs to be called on at times like these?

reallyworried - so glad you have a date now, so you can make plans and arrangements. There are often options with surgery/reconstruction etc that they will want to chat to you about - or maybe just to talk you through the op. - Will be thinking of you on the 3rd - you and Kitkat will be having your ops at similar times, so you can compare notes!

Sounds as if you are having a lovely time malt - it's years since I was in Stratford - is lovely there smile

amberlight Fri 23-Aug-13 19:16:40

'Evening all.
I come bearing news of latest research showing that chilli peppers and chilli powder do indeed kill off 30% of cancer cells. Add that to your Vit D, blueberries, lactoferrin and dark bedroom regimes, topped off with plenty of lovely friends and family. Anything that slows this stuff down is good.
Shall leave wine for all.

thanks for wine amber !
malt have a lovely time smile
kk have prayed to St Anthony - probably no hope, but at least I have one and have ordered myself a replacement pair as I found out where dh had ordered them (on folksy)
Still,am sad to have lost one in the first place.
Off out to dinner with T and dh for anniversary/exam results.

I mentioned my swimming to doc today at hospital appointment and this afternoon got a phone call from chemo nurse saying that the doc had discussed this with her and consultant and felt I should be aware of infection risks etc and that it's not normally recommended (my heart sank) but that onc. reckons it'd be very good for me and so yes I can,but they felt they needed to say ! Onc is very sensible - especially as i have ordered my special lap counting,performance monitoring Pool Mate watch ! grin (I love a gadget)

KurriKurri Fri 23-Aug-13 20:03:02

That's good news amber - I'm always throwing chillies into everything I cook, I love them grin And have eaten loads of blueberries this week as DH found some on offer and bulk bought!

MAS - I am very envy of your lap counting watch, - I've been eyeing one of those up for ages. Great that they have unofficially approved your swimming grin - I think it is a great relaxing exercise - it always makes me feel really good if I have long swim.

Have just been out for a nice long walk with DD, - we were besieged by midges though, now I'm going to have a go at a tapestry I started years ago, that has been sadly neglected, and watch masterchef.

BetsyBoop Fri 23-Aug-13 20:21:04

Hopelessly trying to catch up with the thread after being away...

wow kitkat that's a lot to get your head round quickly, but very good news smile (although I shall of course have to divorce you as my official twin grin)

really glad you've got your date through, now you can plan

foofoo thinking about you

MAS belated happy anniversary and bugger re earring

amber belated happy birthday and thanks for update on research

Malt enjoy your night away, sounds like you have coped a bit better this cycle?

KK - talk of tapestry has reminded me that I need to dig out a half finished cross stitch if I can find it

gigs hope you are recovering well from your op.

<waves hello> to everyone else I have forgotten stupid memory

We had a lovely few nights away, but a bit hectic for me at the moment. We did a 4 mile walk yesterday which was probably a bit ambitious, so I'm really tired today thank goodness`DH had the sense to talk me out of the 7 mile route!

kitkat1967 Fri 23-Aug-13 20:27:51

Malt - I thought you looked lovely in the motorboat pics and your hair certainly looked fine - I suspected it wasn't the wig.

Gigondas Fri 23-Aug-13 20:30:12

Evening all - popping in before masterchef.

Betsy - glad you had nice break but don't make us get the duct tape that is usually reserved for amber out if you over do it.

Mas- sad about earring but glad you ordered another (which is bound to mean st Anthony hears and the old one turns up). Hope you have a lovely meal.

Kitkat- you have had so much to get head round . Am glad you haven't hit too long to wait for op. also watched ther ferry boat episode on greys - emotional (tho Meredith is annoying(. If you alternate with private practice in hospital you get nice variance in tone (private practice is more glam and sex).

Kurri - have reminded me I need to be better with left arm so can finish knitting a blanket for gangnam gig.

Stitches Out and scar fine (also checked my leg which is ok but still not healed)- I want to get better so can swim too mas.

Also had chat with specialist nurse (who had spoken to onc) who said no op for now but may do in future . But whole tone was I am well and things in control so need at present. Have overdosed on supplements (and had chilli) in dinner as following ambers advice on thinking live with not die of this.

Ohh- it's masterchef best go. Love to everyone else

kitkat1967 Fri 23-Aug-13 20:44:28

Hi Betsy - yes i shall have to get a divorce from all the FEC-T girls - or maybe a separation as I may be back after Op but i do hope not!! Still i will be able to report back with all my Op info. Am excited now the shock has worn off as it is another step nearer completion.

Am going to try to enjoy the weekend as will be busy next week in run up to Op.

stuffed full of food- poached pear and stilton and walnut salad then hake wrapped in proscuitto and very garlicky mushrooms and sauteed pots and extra chips ! Dh and T had a rabbit thing then venison for dh and steak for T,then they had panacotta and choc brownie with ice cream.
Now T can drink wine when out (with food) there's less for us grown ups !
Anyway,was v lovely.
Your hair/wig looked fab in those pics I agree malt
Welcome back betsy !
gig am pleased stitches out and they think you are doing well - hooray !

kitkat1967 Fri 23-Aug-13 22:45:24

Gig - is Private Practice american as well? I will look it up as def need some variation ready for my hopsital viewing.

kitkat1967 Fri 23-Aug-13 22:48:48

oooo - looked it up - I do like Addison so may well order it. DH will be thrilled to have more episodes to copy!!!

kitkat1967 Fri 23-Aug-13 22:50:37

actually i just watched the episode where Addison goes to that practice whilst on her hols so I see how it fits together now.

KurriKurri Sat 24-Aug-13 00:06:03

Dear EMIN has a thread in health and she has sad news sad - I know she has so many friends on this thread, and am directing you all towards it in case you haven't seen it EMIN's thread

foofooyeah Sat 24-Aug-13 00:53:18

Kurri, I don't know Emin but she sounds wonderful - how very very sad.

Oh Kurri, thank you for passing my thread on, I have been looking for someone to pass it on to so you'd all know. My family are fuiously looking for someone to blame but it's really just the luck of the drawersad I will try to get one of my lot to let you know afterwards.

That sounds very final, sad x

Gigondas Sat 24-Aug-13 06:41:40

Emin- I am so sorry to read your news. I am glad you are home and hope you are comfortable now. I am sorry that your family are finding it so hard and my thoughts and love are with you all.

On the being final , we are all of us on limited time. I know I likely only have years. If I think on it too hard, it scares and upsets me and I want to rage against the dieing of the light ( to misquote a poet). But am trying to adapt to make most of each day as best as I can given my health and do things that make me happy .

I have not met you in rl but your posts on here show a lovely caring woman who has kept a sense of herself through the most emotionally and physically demanding few months. However long you have (and I hope it is as long as possible), I hope every day is filled with happy and lovely things.

Xxx

Gigondas Sat 24-Aug-13 06:53:41

Malt wig looked amazing btw.

Mas glad meal was good.

Kitkat grin at dh moaning -sounds like my dh as I make him do that stuff. Private practice is all about Addison (who I like) and more glam with lots of sillier stories so I find it great as last thing to watch before bed.

Today could be a long day-mini gig demanding gangnam on loop, dh letting her hmmconfused and its not 7am. Dh off to cricket later ( not that looks like will see much as rainy here) so can enforce a no gangnam rule on mini .

Dh off to states next week on business -what should I ask him to buy?

Also amber remind me what lactoferrin dose is good. Will write my supplement list out when ruby resurfaces but I know she was on holiday and trying to sort uni return stuff.

malteserzz Sat 24-Aug-13 08:17:22

Emin I'm so sorry to hear your news we have all been asking about you and wondering how you were. We missed you on here. I hope you are as comfortable as you can be and are surrounded in love from your family x x

Gigs I don't envy you gangam style on loop especially at this time of the morning !

Thanks for nice comments about my wig smile

Just heard dh and ds go out I presume they're swimming, I missed going with them yesterday but wouldn't be going at 8am anyway ! Looking forward to a nice hotel breakfast later. The hotel is meant to be the most haunted in the uk but didn't have any ghostly goings on in the night thank goodness
Love to all x

Gigondas Sat 24-Aug-13 08:43:15

If its haunted , does that mean yvettr fielding and that camp Liverpudlian bloke who is a medium are lurking about?

amberlight Sat 24-Aug-13 08:47:40

Emin, <waves> I've left a non-useful message on the other thread. I'll back it up with a hug here. Have a large brew and get comfy on that farty cushion they've given you. blush
What would help right now? Well apart from discovering that Brad Pitt has retrained to become your personal oncologist and has discovered a cure?

Lactoferrin...not sure they've ever suggested a particular amount. I buy mine off Amazon and it comes in a bottle that says take X a day. I'd just follow its instructions.

malteserzz Sat 24-Aug-13 09:35:25

Just watched a YouTube video with carol vordamen ghost hunting here ! Good job didn't tell ds last night as he is a scaredy cat

emin a v sorry to hear your news- have written a thing on your thread with a song suggestion xxxxxx

KurriKurri Sat 24-Aug-13 09:53:38

EMIN - it is no wonder your family feel angry, and you must too - it is such a cruel cruel disease.
All this talk does sound final, but in truth there is no finality for someone who is loved as you are, - you will live forever in the hearts and minds of your family, and in the shared memories you have all made together.
And I know that you have touched the lives of many children, - you came into this world and made a difference, and you will leave it a better place xx

malteserzz Sat 24-Aug-13 15:04:39

Beautiful words Kurri smile

topsyturner Sat 24-Aug-13 17:02:24

Right , I'm home .
I haven't a hope in hell of catching up , so can someone please catch me up ?
Pretty please ?????

Hope you are all ok .
EMIN I've not read back properly , but it seems you have had some pretty shitty news .
I'm really sorry to hear this .
Really sorry .
And I echo what kk has so eloquently already written .
Much , much love to you x

Gigondas Sat 24-Aug-13 17:16:32

Hugs topsy ... Will try to update. Apologies for wrong bits or omissions.

kitkat got told her lump is not chemo type so stopping chemo and she is going in for an op this Friday to remove it all.

Malt did another cycle but lost more hair and looks amazing in her wig.

Kurri is being lovely and comforting to all but having some trouble with her nerve pain again.

T got his results and did very well smilebut think was bit of confusion on his grade split ESP drama. Mas wedding anniversary but lost one of her lovely new earrings - also mas back on chemo cycle.

Sparkle finished chemo in Canada
Betsey another round thru and I think was going to have nice long weekend as starting to feel better.

Smee, trice, pigeons and ruby away on hols still I think.

Lovely amber had a big special birthday.

I got out Monday - am doing well (pain loads better) and looks like no more ops for now as pleased with how am doing so want this one to last before do anymore so I am pleased wink.

Hnd been popping in so won't update you there as you know her better than us.

So how was hols And how much winewinedid you need after smurfs movie?

Mini in asking for bloody gangnam again... Am trying to teach her the lion sleeps tonight instead.

Gigondas Sat 24-Aug-13 17:18:10

Oh and reallyworried has date for op on 3 sept and think foofoo still waiting .

malteserzz Sat 24-Aug-13 17:46:32

Welcome back topsy we missed you how was your holiday ?
Gold star gigs for the round up though my wig didn't look amazing at windy castle today I may have to rethink headwear for days like that

M and s dine in meal cooking for tea though will pass on the wine as we've been invited round to boozy friends tomorrow for the afternoon grin

Welcome home topsy !! Excellent round-up by * gig*... Hope you get some respite from gangnam style ...
Have a nice M&S dinner malt - we're tripping across the garden to have Chinese with parents,taking bottle of champagne...
Have been drawing all afternoon.

jchocchip Sat 24-Aug-13 18:23:28

Hello lovely people.
Topsy wine yay you're back
Emin . So sad to hear your news. (((hugs)))) freisas are one of my favorite flowers. Very calming scent. My friend had a floral bookmark with the order of service. A flower is a grand idea.
Standing around in the rain this morning - havn't done much else today except put some ikea thing together. In bath now. grin. Must be cake and wine time soon.

BetsyBoop Sat 24-Aug-13 18:40:53

EMIN so sorry to hear your news, it's just crap sad Sorry I can't match the eloquence of gigs and KK, but you and your family are very much in my thoughts and prayers.

topsy you're back smile Hope you had a great hol.

Exciting news today - we've been planning on changing our car this summer for a while and to cut a long story short we've thought "sod it" and are treating ourselves to a new one smile Should be here towards the end of September. V. excited. (I say "our" car, but as DH doesn't drive, it's pretty much "my" car grin)

trice Sat 24-Aug-13 19:58:29

Hi all, I am back from sunny Italy. It was very beautiful, and great to spend time together as a family.

Thanks for the synopsis Gig, I was about to comment on how well everyone was doing until I heard the sad news from Emin.

Emin, this disease is a cruel and vile thing. I wish you and your family strength in this difficult time.

KurriKurri Sat 24-Aug-13 21:53:49

Welcome back topsy and trice <smooooooooooooch> - hope you both had great holidays smile

Betsey - ooh new car, how swish grin - we are about to get another car (we are without one at all at the moment) as ours failed its MOT and wasn't worth fixing.

Loving miniGig and her gangnam obsession grin

DD and I have just watched Rear Window - we are having a Hitchcock on a Saturday night thing - last week it was 'Suspicion', not sure which one we'll go for next.

Gosh it's hot here in Norfolk, I am sweatier than a sweaty thing!

waving to all x

topsyturner Sat 24-Aug-13 21:56:56

Thanks for the catch up Gigs
Thrilled to "see" that you are home , and that I don't have to come over and break you out !

DH is dozing on the sofa .
DS is at his friends house at the bottom of the street .
DD is lying in her bed , moaning . (She did a 3 hour pony trek on Thursday , in the sea and on the beach mainly . And she is really feeling it now !)

I've just come in from HNDs house .
I didn't eat blue cheese dip and spicy chicken wings . Not did I drink any wine .....

Night all !

topsyturner Sat 24-Aug-13 21:59:10

KK did you watch the film made about Hitchcock that was on recently ?
It was on one of the BBC channels .
It didn't portray him as a nice man at all !

KurriKurri Sat 24-Aug-13 22:24:22

No-I missed that topsy (intended to watch but something cropped up IIRC) - I had read somewhere that he was pretty horrid (and a bit of a weirdo pervy type shock) some of the films are quite voyeuristic and a bit pervy!

Poor DD, - three hours is a long ride, - she'll have to have a lie in tomorrow! - Have you got bank holiday on Monday over there in topsy and HND land?

BetsyBoop Sat 24-Aug-13 22:25:48

KK your ex-car sounds like ours would have been at its next MOT (due Dec13) - the last MOT had 9 "advisories" on it (ie this will cost you ££££ at next MOT if not before) - I've had it from new in 2000 so can't complain I guess, but best got rid of now....

topsyturner Sat 24-Aug-13 22:27:21

Yes bank holiday here on Monday , but DH working .
DD goes back to school on Thursday , DS not till next week .

Pervy type is exactly how I would describe him after watching that film grin

topsyturner Sat 24-Aug-13 22:28:20

Most important question Betsy , what colour is it ???
grin

KurriKurri Sat 24-Aug-13 22:35:22

I think it gets to a point where you have to cut your losses Betsey - ours would have cost more to repair than it was worth, and not much less than it would cost to buy another (2nd hand) car. But we've had to save up a bit so have just done without for a couple of months - luckily being summer its not been too bad having to cycle to places!

I'm quite excited because I've just found a very old packet of chewing gum in my desk drawer, it is soft but edible grin

have had champagne,wine and Chinese- stuffed !

Gigondas Sat 24-Aug-13 22:42:44

Sweaty and hot here too- and I am locked into not getting to sleep til late, then ending up sleeping in day and so it goes on.

Yes-want to hear about new car betsy.

Kurri-film night sounds good. Wasn't sienna miller in that film thing about hitchcock?He was meant to be a bully. Talking of bbc films like that, I was blown away by the burton/Taylor one they did.

Trice so lovely you are back and had a great time smile.

Topsy -sounds like its business as usual now you are all back if you are round drinking herb tea at hnds.

Gigondas Sat 24-Aug-13 22:43:10

Cross post mas-sounds yum.

Gigondas Sun 25-Aug-13 04:57:10

Bloody insomnia -got to sleep at 2(partly after mini woke just as I was going to bed and yes she did demand gangnam...). Up again at 4. Am not in too much pain ( except nerve pain in arm but used to that) so at a loss as to why so bad again.

brew Time I guess.

amberlight Sun 25-Aug-13 06:31:28

2hrs of sleep? Yikes!! Yes please for brew. Do Tens machines make any difference for arm pain?

jchocchip Sun 25-Aug-13 06:33:24

Morning gig. Hope you got some rest even if not asleep. I have marmalade on my phone as dh brought me toast and a brew in bed... oh well better that than in the laptop.

Gigondas Sun 25-Aug-13 06:58:04

That's a really good thought amber. I can up the drugs but they only do so much (plus I know that it's a setback that will resolve in time ).

Mr gig and I think some of insomnia is bad habit /jet lag so going to try to get out for fresh air and not rest too much so can sleep better tonight. I did manage to watch iPad and read so rested if not slept for most of night except for my time with mini (who is now sleeping peacefully).

Marmalade sounds yum. Saw photos of run jchoc - how is your foot?

malteserzz Sun 25-Aug-13 08:35:55

Morning all
I sympathise with the lack of sleep gigs I am a rubbish sleeper. I find the more I worry about it the worse it is so I try and go to bed with the attitude of if I don't sleep I will just rest. Fresh air and keeping busy sounds a good idea
Had my invitation through for LGFB session a week on Tuesday smile
Chilling this morning then spending the afternoon with friends. I can hear the wind from my bed I hate wind now I'm wearing my wig !

Gigondas Sun 25-Aug-13 09:24:50

You could try a scarf malt?

Eyes propped open with matchsticks as try to break the insomnia cycle. Mr gigs planning an outing now whilst breakfast cooks.

kitkat1967 Sun 25-Aug-13 09:54:01

Great summary gig.

I am now on to the next year on Greys Anatomy - new interns etc. Dh busy copying episodes as I will need loads for Hospital stay - I find I can't sleep in hospitals at night and watching TV or films keeps me calm and stops me stressing about being awake.

Got a leaflet in the post from BCN yesterday explaining the skin expander that will be put in - did anyone else go down this route?

malteserzz Sun 25-Aug-13 09:57:08

I have a thing about scarves, they just seem a bit obvious you've got cancer, no offence to anyone who wears them I'm just not ready
I'm looking for some sort of hat, when it gets chilly it will be easy I'll just wear a wooly one !

Scarf on top of wig though malt ? To make it more secure ?-won't look cancer-ish that way..in fact rather ladylike.

malteserzz Sun 25-Aug-13 10:09:53

That could work Mas I have lots of scarves so will experiment

notJenkins Sun 25-Aug-13 10:11:45

Hi I am back in the land of running water and electric light. We were all exhausted but i spent ages in the night in a sleepy state trying to find my flip flops to trudge across the field to the loo when it dawned on me it was only a few feet away across a carpeted floor. I am all camped out for this year.

My scan letter has arrived and it is a few days later than they told me on the phone. I am on of those anal Virgos that like to plan so it has thrown me a bit.

Thanks for the roundup gigs it was very helpful !

topsyturner Sun 25-Aug-13 11:12:53

Morning All

Just had a read and reply to EMINs thread .
It's so bloody unfair isn't it ?
DH just walked in and found me sobbing .

Snap out of it Topsy !

Gigondas Sun 25-Aug-13 12:45:48

Hands topsy a brewbiscuitwine- yep it's not bloody fair . And seems to be the good ones that suffer too.

So far am still awake after my not so great night but must admit not at my most long fused. Can I last the afternoon? Especially after roast pork. ? You have to grandmas topsy?

topsyturner Sun 25-Aug-13 13:18:53

Grabs wine gratefully !

Yes at Granny's , pink meat (roast ham) today .
Then orf to get school shoes for the not so mini topsys .
And a Tesco run , as the only food we have in the house is bread and milk and I have no wine

This evening it's a second roast dinner at HNDs house to celebrate her DSS 18th birthday .
Yum !

Then comatose into bed I should think .
Hope everyone else has a lovely Sunday .
Although I see you have been dragged to a car show room Gigs
Sigh ...

Oh and Amber a very happy belated birthday .
I hear it was a special number ?
21 was it ???grin

BetsyBoop Sun 25-Aug-13 13:26:34

>> Most important question Betsy , what colour is it ???
hehe topsy - DH did hours and hours and hours of research as to what car to get, I got to pick the colour grin - metallic petrol blue - it's a Skoda Superb Estate like this one (the pic is the 2012 model, can't find a 2013 model in petrol blue)

Just made some rhubarb and strawberry crumble and a fruit cake so I'll toss some on the trolley when they are cooked.

phew it's warm here today

Gigondas Sun 25-Aug-13 14:30:04

Oh very nice - and big betsy.

Yes it was basically a posh car showroom but it was a way to avoid sleep. In park now on bench- may have an ice cream but probably ought to wait and buy kids one too. Your treats sound tempting as does pink meat. We are having late lunch so am starved.

kitkat1967 Sun 25-Aug-13 14:54:07

wow - massive car Betsy - but lovely colour. I have an estate car at the moment but may change to something smaller after Xmas as don't seem to need so much space at the moment. Also mine is a very dull colour and i would love a fab colour like yours!!

Gig - you def can't have an ice-cream without your little gigs.

I have a long day out yesterday (and late night) - and was fine - but am absolutely bushed today - got up at 1pm as DH had cooked brunch but am knackered again already so will be an afternoon in front of the TV for me I think.

trice Sun 25-Aug-13 15:07:53

Dh is in a clearing out sort of a mood. He has got rid of my camping gear as he hates camping and I am never going to be well enough to go on my own with the kids again. He says he is being realistic. I say he is being hurtful and an Arse.

I am feeling really down today. I have the home from holiday blues.

BetsyBoop Sun 25-Aug-13 15:18:25

yes it is a bit scarily big, but DH assures me it's only a foot longer and 7" wider than our current car (Nissan Primera) so hopefully I'll soon get used to it. I hate car shopping with a passion (hence having the current one for almost 13 years!) so we figured we needed something to fit the kids as they get older (DH is 6'3", I'm 5'11" and the kids are both two years ahead of "average" height for their age, so looks like they will be tall too and will be in need of rear leg room).

BetsyBoop Sun 25-Aug-13 15:23:49

x-post trice - that's not good sad <hugs> - and who says you won't be well enough to do a camping trip again? Or even "garden camping" (my kids love that!) You have been doing so much better lately smile

Gigondas Sun 25-Aug-13 15:31:50

You are right kitkat so we all had one together.

Trice, I agree with betsy. Never say never- you are doing loads better and either gardening or lux camping. We were meant to be going this week but haven't. I certainly haven't given up on going again. Not surprised you are fed up.

Home now and staking out kitchen for roast pork.

NedSchneebly Sun 25-Aug-13 16:57:49

<Ned sneaks in, hoping that people won't notice she's been absent for such a long time>

Afternoon all smile brew and cake anyone? I've got flapjack or choc brownies on offer?

Trying to catch up, and then I read EMIN's news. . .

Emin that is shit news of the highest order - I'm so sorry lovely. Cancer is one of life's nonsensical evils and the most vile disease of all. Nothing I can say will help, but I am thinking of you and hoping that whatever time you gave left is full of special experiences with those you love x x x x

Will catch up on everyone else - good summary gig ! Sorry been so AWOL - been madly busy. Had nice holiday in Ireland and now in crazy "last week of holiday" madness, with DS's 6th birthday thrown in too!

Lots of love and hugs to all of you lovelies x x x

amberlight Sun 25-Aug-13 17:42:35

Well now, if there's cake and brew on offer....

Yes, it was my 21st birthday and it is of course a total lie that I may have been 50 <hides birth certificate>

waving frantically at ned !!
Am off to meditation in a bit, then more anniversary celebrating with prosecco and chocolates

kitkat1967 Sun 25-Aug-13 19:31:02

help again - more stupid questions from me.
So surgery is on Friday but not meeting surgeon until Tuesday evening and BCN on Weds pm. I am guess surgeon will talk about op but I need BCN for practical info and that does not leave me much time to get organised.
I have ordered 2 post surgery bras (and hope they come in time) but do I actually need them immediately or will I have only dressings? Also will the nurse provide a prothesis or do I need to buy that as well? grrrr... not stressed about the op but am stressed that I have no info and feel un-prepared.
PJs I can do - but do I also need tops that un-button down the front - I seem to only have one, or will I be OK in a T-shirt (once out of PJs smile)?
Am booked in for 2 nights - does that mean that I will come home with drains in?

KurriKurri Sun 25-Aug-13 20:08:15

Sorry just dashing in quickly - ,<waves madly at Ned and slobbers in her general direction grin>

Kitkat - you won't need bras immediately - you'll have dressings, and wil need a bit of time to heal before a bra is comfortable.
BCN/hospital will provide you with a softie initially, then after several weeks you'll get a proper prosthesis fitting at the hospital - you don;t need to buy one yourself at all, it is all provided (although at some point you might want to buy yourself spares for swimming etc. but you'll work out what you want once you get used to it.)

yes to button down the front tops - as they will keep looking and your arm will be sore, you don;t want to keep taking tops over your head.

two nights - you'll very likely come home with drain in unless you are very lucky and stop leaking fluid quickly. District nurse will come out to you each day to check wound/redress/remove drain when necessary. You need a little bag of some sort that you can hang over your shoulder to put your drain in, for ease of walking around with it in. (sometimes hospital, provide a little bag sometimes not)

kitkat1967 Sun 25-Aug-13 20:27:48

thanks KK - that makes sense. So my priority is to search wardrobe and if necessary shop for tops.

As reconstruction will be in 6 months (all being well) I'm hoping to have minimal new underwear etc. but still want to feel positive about it all.

KurriKurri Sun 25-Aug-13 20:58:41

Oops - slightly misread your post Kitkat - I thought you meant tops for hospital (where you need to keep taking them on and off fro exams) - back at home wear whatever is comfy - loose soft t-shorts are ideal.

I find that tops which you might think will be too low cut can be adapted with a lacy vest top underneath, and some bras have a sort of lace insert bit (the problem is that prosthesis can gape away from scar slightly when you have a mastectomy, so you have to cover up a bit more or everything will show. But you'll work out what feels comfortable for you smile

kitkat1967 Sun 25-Aug-13 21:07:18

ah Fab - so I already have PJ tops with buttons down the front and am assuming I will not get dressed until time to leave hospital.

Hopefully i've got enough variety of clothes to find things that will work - am aware that i won't be able to wear anything low but don't think that's a major problem - just a question of trial and error I guess.

topsyturner Sun 25-Aug-13 21:42:44

Kitkat what boob size are you ?
I found boob size made a great difference to what you wear post surgery .

After my mx (I was at least a GG cup) I wore M&S total support , wire free (granny) bras . With my hospital supplied softee (tis a boob stuffed with teddy bear stuffing , whilst you are still tender and healing after surgery)
And I wore tight fitting best tops under my normal tops , as those granny bras showed over the top of all my tops .

After my reduction surgery (on my remaining boob) I just wore vest tops until I got my proper prosthetic as I was reduced to a b/c cup .

Def try to wear button up at the front tops in hospital as there is always someone wanting a poke around !

And yes , a small shoulder bag for your drains .
If just mx , should be 1 drain .
If node clearance too , 2 drains .
They don't like to leave the drains in for longer than 5 days , but will do if they really need to .

Ask ANY other questions you want , we've all been through just about every surgery you can think of !

kitkat1967 Sun 25-Aug-13 22:00:11

thanks Topsy - am a 34B/C so def not large which I am hoping will help. Just mx - nodes are clear - so mx with insertion of skin expander.

I've ordered a couple of bras on-line but (can send them back if they don't fit I guess) - spent a long time looking for the least 'granny' options as I really don't think at my age and size i want/need those great wide strapes and think backs.

kitkat1967 Sun 25-Aug-13 22:10:57

oh and also ordered one of those sew in pockets - so will experiment to see what suits me best.

jchocchip Sun 25-Aug-13 22:20:14

Kitkat bit of a shock bringing your op forward but good to get it done asap once decision made. I had my op (lumpectomy) 2 years ago on 1st Sept and certainly all healed up and rads done by Christmas.
Busy busy day here. Junior church, lunch, party, walk to the river and watched tail end of a dvd and now bed smile
Foot is a bit better gig, another week and a bit of anti-inflamatories and then I'll see if it is up to running, if not a referral.
Saw friend with recurance this morning, she is having a rest from chemo and feeling a bit better.
Party was at a friend's house - she died just as I was dx so 2 years ago. Was a good party but missed her so much being in her house.
Nighty night everyone. Hope you are meditated, fresh aired into a good sleepy place tonight.

topsyturner Sun 25-Aug-13 22:59:28

It helps Kitkat having smaller boobage !
It doesn't feel so noticeable after surgery .

topsyturner Sun 25-Aug-13 23:01:08

I have a friend who died 3 years ago Jane
And when I go to her house , it feels wrong not to see her there .
Even harder as her DH has remarried , and as nice as his new wife is , she's in my friends house !!!

malteserzz Sun 25-Aug-13 23:13:50

Just saying night night
Had nice day, lots of wine bit drunk grin

Hello all. I am popping in very quickly to say sorry for not being around, I had a very hectic week and then been at a festival smile I have tried to catch up but will post properly soon. I've seen EMIN's thread sad x

KurriKurri Sun 25-Aug-13 23:52:52

Hope you had a lovely time at the festival Ruby - we wondered where you were - I'm glad you were off having fun smile

Gigondas Mon 26-Aug-13 03:46:06

Hugs for ruby - I missed you.

Jchoc glad foot improving and party sounds nice.

Malt your fb pics make me laugh- can see you had a good afternoon.

sad For all the friends who aren't here ( but its nice as are being remembered by mentioning them). Mr gig knows I get very wobbly on idea of remarriage so we don't talk about that.

Up as aching(was crawling into bed having stayed up all day)- maybe need some of Amber's duct tape as I think overdid it a bit yesterday which isn't sensible as also in middle if dropping meds (steroids go down today).

Mr gig off to us for few days later ( mini won't be happy about this!) - what do I need to put on shopping list for him to buy ? I HSBC Victoria's Secret pyjamas and nice coffee ( American tastes nicer in morning I think ).

brew For me before I head back to bed.

Gigondas Mon 26-Aug-13 03:46:59

Have not HSBC - bloody predictive text.

amberlight Mon 26-Aug-13 04:30:32

<waves duct tape>
Hope you get some sleep.

Gigondas Mon 26-Aug-13 05:19:18

Watching tv on iPad- you up as you puzzling over something?

wouldratherbeonthebeach Mon 26-Aug-13 07:23:09

Been lurking for a while. I had a lump removed 2 months ago and full lymph node clearance 4 weeks ago and start chemo tomorrow. I've been putting off thinking about it as we've been away til today but now its tomorrow and really scared, any advice as to what to take with me, extra tips? Anything?

malteserzz Mon 26-Aug-13 08:09:19

Hi wouldrather
For my 1st chemo I took a bag of stuff, didn't use any of it so for the 2nd all I took was sweets to suck, they provided drinks and sandwiches if you wanted them. If you are having the cold cap you might want to take a towel and conditioner as some places put this on your hair. Mine didn't and cold cap hasn't worked boo
I was absolutely terrified of chemo, my only experience of it was on tv and films but honestly it's not that bad . Actually having it done takes less than an hour and the nurse sits with you the whole time and talks you through everything. It doesn't hurt.
Everyone is different with side effects, I've been lucky so far haven't had any sickness or nausea
Id stock up on things like ginger biscuits, ginger beer, fresh pineapple, crackers, crisps etc that you can stomach if you do feel icky

Had great afternoon yesterday, bit too much wine though smile by the end of the night my wig was all over the place but was only me that cared ! We all ended up wearing silly hats anyway so that helped

malteserzz Mon 26-Aug-13 08:20:15

Gigs and amber I hope you got some sleep
Ruby glad you've been out having funsmile

BetsyBoop Mon 26-Aug-13 09:47:05

Hi wouldrather and welcome, although sorry you have to join us.

As malt said the anticipation of chemo is a lot worse than the reality, honestly, although it's normal to be a bit nervous. (I'm due to have round 4 on Thursday) Which chemo are you doing? I'm FEC-Ting. You don't need a lot with you on the day, it's done suprisingly quickly (I'd imagined sitting there for hours and hours, but even my first one was under 2 hrs and that included all the preliminaries like watching a video on things to look out for like high temp etc.) Sucky sweets are good. I always have lip salve as hospitals always make my lips dry. Perhaps a book/mag to pass the time. My hospital provide drinks and sandwiches etc.

For afterwards have some nibbly things handy as malt suggested in case you are nauseous and a digital thermometer to take your temp daily (my hospital are obsessed with you monitoring your temp!) The first round is pretty much "suck it and see" in terms of side effects. I was dreadfully sick on FEC, malt has had barely a whiff of nausea, not that I'm jealous or anything everyone is different. However the chemo team really do want it to be as easy on you as possible so if you are suffering ring the helpline and ask for advice, don't keep suffering. Once they know what you need help with they can also up the appropriate drugs the next time.

Any qus just ask, nothing is off limits here smile

gigs and amber I hope you went back to sleep?

ruby great to here from you, we missed you. Sounds like you've been busy having a good time smile

malteserzz Mon 26-Aug-13 10:26:29

Morning Betsy smile is it your 1st tax on Thursday then ? Be interesting to see how the SEs are different, I've heard it's more achy than fec
I asked my onc if taking my temp every morning was enough, she said she wouldn't even say it needed to be that often, just take it if you feel poorly. Just shows how they all give different advice ! I do take it every morning as I like that reassurance

Think we are car shopping too later, dh wants a new one.

KurriKurri Mon 26-Aug-13 10:59:39

Hello wouldrather smile - sorry you find yourself here, it is all rather scary and you've had an awful lot happen to you (and you life has changed radically!) in the last couple of months - its a lot to get your head round so you are bound to feel wobbly.

As others have said - first chemo is hard because its fear of the unknown and dealing with all the conotations of 'chemo'

I think everyones mentioned most of what I'd suggest (so apologies if I repeat)
Something to read, or listen to on ipod (audiobooks are good if you like them) - you'll have one arm out of action so anything that requires two hands is out.

Snacks and drinks of your choice - hospital will provide sandwiches, and tea/coffee, - if you like herbal tea take a teabag along and they'll make you one. I preferred to take my own things - bits of died fruit, little tomatoes, nuts - nibbly stuff.

First chemo takes a bit longer than subsequent ones, because they will watch for reactions, and will be explaining it all to you, and there are sometimes delays in getting in to the unit, - have you got someone going with you for company/moral support?

I'd take a cardi to wrap round your shoulders - it can get cold sitting in one place, but you need something you can take off with a line in your arm. I don't know of you have a picc line or are having a canula when you get there. If the second, - having warm hands and wrists makes it easier to find a vein - so I used to wear gloves and wrist warmers in the car and waiting room.

If I think of anything else, I'll repost.
I think one of the fears for me daft as it sounds, was the idea of 'going into a room full of people with cancer having cancer treatment' but everyone is very friendly and kind and you will honestly get used to the routine of it.

They'll give you a bag of medication to take home, make sure you have the unit/hospital number handy by your phone in case you need to contact them with enquiries before your next cycle.
I found it handy to jot down my symptoms and side effects in a little notebook each day, because they'll ask you about them next time and if you know how you felt each day you can be given stuff to deal with problems. If you feel very sick, ring them and let them know - they can give you something to help,- don't put up with any side effects, - they can give you something to help with most of them smile Good luck!

Sorry - that's one of my massive essays again! - waving to everyone, - sorry you had a bad night Gigs, hope you're feeling a bit better now, what did you put on your list in the end? grin

KurriKurri Mon 26-Aug-13 11:01:22

Tax ladies (malt and Betsey) - I never had Tax so can't help you with info about that, I think several people on here did have it though smile

Hello wouldrather (fab name!) smile my first chemo took about seven hours but I had bowel cancer so slightly different I expect. I took a book, a puzzle book, blanket to keep me warm, slippers, snacks, drinks etc. as it was pretty much a whole day thing so I liked to get comfy! If you're only there a couple of hours you probably won't need so much but personally I'd err on the side of taking too much as you don't want to be bored or hungry smile

Waving to everyone else, I shall try and catch up properly as there have been so many posts since I went AWOL blush

jchocchip Mon 26-Aug-13 11:31:02

Morning peeps. Hi to wouldrather will think +ve vibes for you tomorrow.
Topsy was good to be in friend's house with her friends, dh ds x2 her dsis and ddad who is now rather frail but sang some of a Frank Sinatra song.m.youtube.com/watch?v=qRze4OvnpU4&desktop_uri=%2Fwatch%3Fv%3DqRze4OvnpU4 Just missed her so much as that's where we more often than not met up for coffee when the dcs were little.

BetsyBoop Mon 26-Aug-13 11:33:45

I second KKs advice about keeping a diary of how you feel each day, it helps in subsequent cycles to know yeah I felt crap on the Wed but by the Fri I was much better, you do forget.

Malt yes first tax this week, so a bit nervous of the unknown again. Hopefully no sickness as it's not supposed to be as bad. I think you generally feel more like you've got flu for a few days, sowe shall seesmile I'm hoping I avoid bad peripheral neuropathy (sp?) as my DB had it bad on his chemo and it wasn't fun.

Have fun car shopping.

We have become much more "sod it, let's do it" since my diagnosis, no point having savings for a retirement I might not see grin Is that a common reaction?

jchocchip Mon 26-Aug-13 12:00:42

Definitely! I've joined the "sod it, let's do it" club too.

malteserzz Mon 26-Aug-13 12:09:27

That can be our motto !
Car shopping now, kids are off to grandmas smile

wouldratherbeonthebeach Mon 26-Aug-13 12:34:12

Thanks so much, that sounds really good, will put some ginger biscuits in the bag. My husband is coming with me so that's good. Like the idea of note keeping as I forget everything. I've decided against the cold cap as heard its a nightmare and doesn't always work. It's a shame bc just coming home from holiday and my hair is a fab colour from the sunconfused. I can't remember what the treatment is called for first 3 months but second is tax.

Any ideas of books/info to help the dc, ds 14,12,8 & dd 5?

KurriKurri Mon 26-Aug-13 12:55:50

You may well be having FEC first wouldbe - that's a common one to have, - if you do, be prepared for red wee afterwards for 24 hours - it stains it and might be a bit alarming if you aren't expecting it (although they will obv., tell you at hospital about such stuff)

Not sure about books. as my DC were older than yours are, - you might well find that there is more aimed at the little ones than the teenagers.
If you go to MacMillan website, - they have a lot of free publications you can download or send off for, covering a huge range of subjects - you might find something there that explains treatment for youngster of different ages. smile

I tried cold cap, but it didn't work, - it wasn't much fun anyway! - In fairness I think others have had more success than I did with it.

The main thing is to take whatever you need to make yourself comfortable for a few hours, you'll have your DH to chat to and he can pop off and get you anything you've forgotten from the hospital shop (IME it helps if family can do practical stuff as they can feel a bit helpless otherwise).

You will need to drink plenty afterwards when you get home, - and often fizzy drinks (I went for apple lucozade) can help settle the stomach, - but its a good idea to have various tempting cordials/juices in stock so that you have a bit of variety. Teas and coffees obv. also fine, but this hot weather something cold is nice. smile

topsyturner Mon 26-Aug-13 13:53:00

Afternoon All
(Throws DDs , still warm from the oven , Nutella cookies on the fbs trolley)

Welcome to you beach
There is a book for the younger ones called "Mummy's Lump"
Your breast care nurse should be able to give you a copy (I was given one with all my initial leaflets and info)

The best thing to do , I found , is talk to them .
I kept my DC (who were 12 and 8 at my diagnosis) one step behind what I knew . I did this because the treatment plan is always liable to change , and I never wanted my kids to think I had lied to them .

malteserzz Mon 26-Aug-13 16:53:16

We got a car, well it's dhs it's a range rover and automatic not sure I will dare to drive it ! He's v pleased anyway

My kids are 14 and 10 and have coped really well with my dx. We hardly talk about it now, think as I'm still looking fine, cooking their dinners and doing everything as normal it hasn't really affected them
Even the hair loss hasn't bothered them, I do think children are very resilient

trice Mon 26-Aug-13 17:12:55

I have made bramble and apple crumble cake. I would put some on the trolley but I am a greedy guts.

I had tax last time, it made me achey and tired but less sick. My toenails all fell off which was a bit weird. They hurt like hell growing back afterwards. Fun times!

Beach, I am sorry to hear about what you are going through. Chemo is a bugger, but you will get through it. Good luck with your first treatment.

I am ready for the dcs to go back to school now. They keep wanting me to play top trumps with them. Which sadist invented that game?

BetsyBoop Mon 26-Aug-13 18:56:58

oooh a Range Rover malt now that is a big car! Why not let DH chauffeur you smile

bramble and apple crumble cake sounds scrummp trice. I'm almost ready for DC to go back to school. They go back a week on Thursday, which is a bugger as that means the last few days of the hols are post-chemo days...We will have to make the most of the next couple of days.

Am very tired now after our galavanting today - we walked for miles on the beach and then went to the park after
<note to self to buy duct tape to curtail future galavanting>

wouldrather Welcome and loads of good thoughts to you for tomorrow.
ruby -lovely to have you back too !
Safe journey to Mr gig - lovely pics of mini and big,kissing Daddy Pig and the nails - Big looks like a religious figurine smile
Have been to Petworth where it was v hot, felt sick and weedy but it was a nice day nonetheless.
Sleep well tonight sleepless ones xx

topsyturner Mon 26-Aug-13 19:39:06

I'm jealous , as Big Gigs has nicer nails than me grin

malteserzz Mon 26-Aug-13 19:53:25

I know Betsy it's massive I'll never park it though it has got a reversing camera ?! I will stick to my little car I only usually drive his when he's at work and he asks me to take it to the garage or something.
Mas sorry you're feeling icky have you got anything to take for it ?
Love big gigs nails and the daddy pig pic

Feeling a bit sad as should be going back to work tomorrow, 2 teacher days then should be visiting all the new children at home hmm

kitkat1967 Mon 26-Aug-13 20:56:02

Lots of lovely days out all round then. We went to a local show and it was very hot - I had a nap when i got back but did get up to cook tea!!
Malt - that is a major car - your DH must be very excited - when do you get it?
I'm also very impressed with Big Gigs nails but the picture of mini has reminded me that we haven't seen the Mummy Pig t-shirt yet.

What's everyone got on next week? I see Beach is off for first chemo tomorrow - good luck - you will soon be an old hand at the whole process.
I am seeing my surgeon tomorrow but not until 6:30pm - am going on my own - should be just a case of finding out what he plans to do I guess. I have loads of questions about my aborted chemo but I don't think he will have any answers on that - I assume I'll need to see onc at some point to discuss. How long after the surgery do you think it will be until they report back on what they found? After my inital excitement of the chemo stoppping I'm kind of hoping they will finish the course as I'm now scared of not getting the full treatment.

kitkat1967 Mon 26-Aug-13 20:58:25

Malt - are you stopping your old cap now or do you have enough hair to keep going (honestly it does look OK in your pictures).

NedSchneebly Mon 26-Aug-13 21:10:25

Evening all smile

I had tax after FEC and I coped much better with it in terms of s/e - I was achy and tired but barely any nausea. I did end up in hospital twice with infections so do watch your temperature. I also had GCSF injections to do every day from day 3 to day 12. They're pretty easy to do yourself if you're ok with needles!

All the best for first chemo beach - it's def a bit of a waiting game with the side effects, so take all drugs offered. Steroids - like dexamethasobe - can make you very jittery and hard to sleep so try and take your last dose of the day no later thn mid afternoon, otherwise you might find your sleep is affected. Drink plenty - find a drink you like and get lots in. I drank lots of fizzy water, sometimes with lime cordial in it. Eat when you want, sometimes little and often is better if you feel a bit rotten. Big hugs x x

My DS was 4 when I was dx, so we just kept things simple, telling him hi things would affect him, what Mummy would be like, who would pick him up fom school etc. we also only explained things one stage at a time, sp it wasn't too overwhelming for him. He seemed fine at the time but did want to light a candle for me in a cathedral when I explained what the candles were for. I may have had something in my eye, making it water quite a bit. . .

gig your girls are so gorgeous! Your FB pics are great. Safe journey to mr gigs

MAS sorry you're feeling a bit ropey. Take it easy wont you, lovely?

kurri big mwah to you, lovely lady!

Hope everyone has had a nice weekend, as far as possible.

Big love x x x

amberlight Mon 26-Aug-13 21:16:09

'evening all.
Hi Beach
Wise advice from the others re the chemo. If you can get a signal on the ward, chat to us at the time if it helps? If it's FEC, the biggest surprise for me was the tray with the great number of bloomin' great big tubes of different coloured things that the machine slowly pumps in. It's quite amazing. But it's very effective stuff.

I did get back to sleep thanks. Sometimes I'm awake in the night. Just the way my brain is.

I have a Land Rover Discovery. It's stupidly big and tall and will fit into almost no car park anywhere, but I love it.

LadyBeagleEyes Mon 26-Aug-13 21:21:39

My Macmillan nurse told me today they may give me chemo in tablet form.
What's the difference?

malteserzz Mon 26-Aug-13 21:22:10

Kitkat we are meant to get the car on Saturday but dh has his vasectomy in the morning so it could be Sunday!
I don't know whether I'll be carrying on with the cold cap I've got another 10 days till next chemo so I'll see if I've got anything left. It's so thin I can see and feel my scalp, sometimes I think I look like a ghost!

ladybeagle I have chemo in tablets (capecitabine - sometimes used in early bc I believe,but mainly for metastatic bc and colon cancer) It is taken twice a day,after food - the dosage calculated by your weight /body mass- some adjusting of dosage probably needed until it is balanced. Side effects are same as other chemos (nausea,diahrrhoea,plus possible sore and red hands and feet) but there should be no hair loss - poss. hair thinning,but haven't noticed any.

Can I ask something ? Do you think it'd be ok to ask bcn if I can def. see onc on my next appointment rather than onc registrar - I know that consultant obviously needs to see new patients when they are dx/begin treatment and I do see him but quite often it's reg. instead. I just wanted to check in with him with some questions which I don't feel like asking reg (she is v nice but he is more direct and decisive)

kitkat1967 Mon 26-Aug-13 22:48:36

MAS - I don't see why you an't ask to see the consultant - even if they can't accommodate you they can only say no (but I'm sure they won't). How often do you go in?
In my case it was one of 'the team' - who I assume was a reg - who originally gave me the all clear so I'd be very reluctant to see anyone other than the consultant.

malteserzz Mon 26-Aug-13 22:59:42

I can't see any harm in asking either Mas. I suppose it depends if they can fit you in. I just see one of the team, my actual onc came at the end of my 1st appointment and shook my hand and said hello that was it.

Night all hope everyone sleeps well

Am in every 3 weeks . Will ask bcn.

wouldratherbeonthebeach Mon 26-Aug-13 23:17:39

Thanks all for your advicewink. I've explained to ds 1&2 as they are older and very perceptive, they are 14&12, I don't want them to get a shock when my hair falls out. I've explained to ds 8 and dd 5 a little bit less but don't want them to be surprised etc.

I've no idea how I'll be after and don't like not being prepared. Got in a supply of ginger biscuits and some lemon & barley squash. Will let you know how it goes.....

KurriKurri Mon 26-Aug-13 23:32:02

good luck wouldrather smile

MAS - I would think its fine to ask to see your onc. - but it might be that you have to have an appointment when he does his clinic days, - mine never seemed to be there on chemo days confused

Hi lovely Ned smile - hope you had a good bank holiday, is school starting back soon? - do you have to go in for a few days before the children start?

car sounds very snazzy malt - and big!!

That cake sound yummy trice- friend of mine was boasting on the phone today about huge blackberries in her garden - I may have to steal some form her grin

Gigondas Tue 27-Aug-13 06:46:39

Morning all- look how bright eyed and bushy tailed I am as slept all night (wonders if its coincidence that steroids being dropped help).

Good luck would rather- my kids very small but I am of topsy school of explaining as I go along what drs doing and what to expect (eg I am in hospital, this hurts etc).

New car sounds lovely malt. Don't feel too sad about job as I am sure this time next year you will be back. Plus I can shamelessly pick your brains about big gig who can be a bit of a pickle at school wink.

Mas I think it's a very good idea to see onc. I know you can demand that particular drs do procedures so I don't see why can't ask to see someone.

Tomorrow I have a blue badge assessment . Applied when could barely walk but feel bit of fraud now am feeling better. Am bit nervous about it but there is no doubt time it would help.

my lovely reflexology lady coming later too so that will be nice.

good luck with blue badge gig - several ladies in secondaries group have them.
Onc is always in on chemo days and seems to see everyone fairly regularly,it's just that one never knows when you might se him or registrar- am pretty sure I can ask but I always worry about being demanding or a nuisance.

kitkat1967 Tue 27-Aug-13 09:08:26

golly MAS I am sure you are not a nuisance - get on and do your asking - when is your next appointment?

malteserzz Tue 27-Aug-13 09:32:33

Good luck would rather today, let us know how you get on.

Gigs good luck with the blue badge and yay to sleeping all night

Mas sometimes you need to be a bit of a nuisance and ask, I'd probably still be waiting for chemo to start if I hadnt !

Still feel sad that I should be at work today, I also know they'll all be asking how I am and I hate people talking about me !

Need to go to sainsburys this afternoon, will go on my own as the kids are both out with friends. Am pathetically worried about this incase I have to face someone I know in my wig or if it falls off or slips while im walking round. I hate the way that cancer has taken away my confidence

Moan over

thanks malt and kitkat - will see - not really sure what I want to ask (well I do really, alonng the lines of what will happen next sort of thing) but sometimes it's reassuring to check in with the head person.
Feeling a bit queasy again so have taken domperidone.
Anything needed for the trolley later ? am still very keen on the toffee filled waffly biscuits...

Good morning,

Good luck today wouldrather, I hope all goes smoothly and quickly.

Fabulous that you slept through the night gigs, I hope the assessment goes well. You're not a fraud and you've had lots of problems with mobility so seems perfectly reasonable for you to have a badge.

MAS definitely worth asking. I always make a list of questions but when I get to the appointment I often find that some don't seem important anymore and I think of new ones on the spot, so hopefully you'll find it all becomes clear when you get there smile

I have my period, mixture of grin it's come back and sad angry because it seems to be messing with my pouch and now I need the toilet every time I move and keep getting waves of pain/pressure. I am planning to spend the day either in bed or perhaps convalescing on my swing bench as it looks like a nice day! smile

Festival was fun and so pleased I managed camping! I'm covered in insect bites which I'm taking as a good sign as until now insects have been steadfastly ignoring me probably because of my poisonous chemo blood! smile

Waving to everyone! I hope you all have a lovely day x

kitkat1967 Tue 27-Aug-13 12:11:59

wow Ruby - you have achieved a lot to survive camping at a festival. Such a shame you're stuggling today but hopefully that won't last long and you'll be back on track in a day or two - it will be annoying if you suffer like this every month though. Enjoy a quiet day in the sun.

Gig - i agree that you are no fraud - think back to only a couple of weeks ago and you were really struggling to get about.

KurriKurri Tue 27-Aug-13 12:52:32

Afternoon all - its taken me all morning to do my online shopping as the site went down -I am feeling very frazzled - have loads to do do day and that was a job which should have taken an hour, - instead it took 2 and a half angry

Ruby - hooray for return of the missing periods grin (even if it is a bit of a pain) - it shows your body is getting back to normal after the battering its taken this year! Well done on the camping - hopefully nice weather meant it wasn't too muddy or cold smile

MAS - forget any nonsense about being a nuisance or whatever - that's what they are there for, you are a patient - patients are not a nuisance they are their clients, if you want to talk to your consultant you've got every right to do so.

Gig - good luck with the blue badge application, I see no reason at all why you shouldn't have one, it will make life easier for you. Not a fraud at all. DD's friend has one and her condition is one which is sometimes fine ad sometimes not, so periods of feeling a bit more able don't make you a fraud.

malt - dates like 'return to work time' if you are a teacher, are hard, but think how far you have come in the last few months - you are well along the road to getting better, and you will be back at work before you know it.

Waving to all - must dash, I've got a meeting tonight I have to prepare for, and I have to do something to my awful hair, and wash some clothes so I'm not naked grin

ruby am in awe that you camped ! Pesky periods though nice to know that things are working smile
Have emailed bcn to ask her about seeing consultant.

notJenkins Tue 27-Aug-13 13:57:35

Good afternoon from me.

Been school shoe / trainers / football boots shopping today and managed to buy 1 pair of school shoes , 1 pair of bright purple desert boots for myself and an indulgent lunch. Better get out again later to finish the job properly. I hate shoe shopping for the children.

I am off out for dinner with a good friend later so a few vodkas will get me over the shopping horror.

Who is doing the blue assessment gigs ? I have heard that most of the assessment is done as they watch you out of the window walking across the car park grin I am sure you will have no problems and variable conditions are very commonplace.

My meds change tomorrow in preparation for my scan and I can feel myself being sucked into cancerland again. I am determine to enjoy my leave before I start feeling really rough.

Gigondas Tue 27-Aug-13 14:23:11

It's being done at local assessment centre. I am going by taxi with stick etc which is just following advice of drs .
I know my condition is Variable so I don't feel that much of a fraud but when you read the form , some of conditions are ultra tight. I have also been warned by my cousin (who did the assessment years ago) that some of questions can be quite upsetting.

But have prepared for this by booking lunch in local Jamie's after . this is also as thank you to the wonder nannies who have been staying over to help as I can't lift mini . We are going to finish last bits of shopping for big gig school and i may do some shopping in Lakeland while mr gig is away.

think your enjoy it before meds change is good Nj- have you got any treats like books, DVDs etc planned for your rough time? I am hoping tho it may not be as bad as you fear.

angry About supermarket delivery kurri-that drives me nuts. I must admit I end up using ocado more often tho it's more expensive as site works. I can never get Sainsburys to work so mr gig does it.

Ned- happy birthday for ds . Lovely FB photos.

Ruby - bites are a good sign but sorry you are resorting to going to loo all the time.

NedSchneebly Tue 27-Aug-13 16:26:10

Afternoon all smile

Had lovely day for DSs birthday - I can't believe he's 6!! Went to sandworld in weymouth - amazing sand sculptures on sci fi theme so Star Wars and dr who - DS very pleased! Legoland on Friday then taking some of his friends to cinem on Saturday. Wish me luck . . .

MAS good to ask BCN. They can only say no, but if they know you want to see consultant they should try to accommodate your wishes.

gig good luck for the assessment. Hope they're kind to you.

NJ We need another lunch soon - not seen you in ages. How long til scan?

ruby boo about periods, but at least everything's starting to fire up again, which I guess is encouraging. Hope you're well x x

Probably missed other things but can't scroll back on phone properly. . .

Lots of love to all x x

aw,happy 6th birthday little ned grin !!
I do see consultant from time to time but would quite like to know when so I can be prepared - bcns are always fitting people in so am hopeful.
T's AS levels sorted - English language & lit, history (2oth century European)and Government and Politics...phew.

PictureThis Tue 27-Aug-13 17:25:26

Hello all and welcome beach, as others have said, once you get going on your treatment it's not so scary.

How exciting about your dh's new car Malt, we've got a reversing camera on our car (Qashqai+2) although I still rely on my mirrors when reverse parking. Do you use a wig cap with your wig? I found that now I have no hair/some stubble it acts like velcro with my wig so it takes a lot to make the wig shift. Just as well as we were at a party yesterday and mini mini pic decided to give my 'hair' a tug eek....could have been a conversation stopper let me tell you. Fortunately it stayed put.

Had my 3rd dose of chemo today, and had it confirmed that I'm having 6 doses of chemo not 8 so that means I'm halfway through...hurrah. However it means next time I'm having Tax and Herceptin and Tax sounds a barrel of fun!!
KurriKurri when you have a mo, would you mind if I asked you to hold my hand. I'm having a wobble as it's all a bit overwhelming and I'm having the treatment you did, chemo, node clearance, rads, herceptin and tamoxifen (can't remember if you had that). How did you find herceptin? I just need to know there is life past this. Has anybody else felt like this, I've been a bit teary and completely sorry for myself, anyone want to give me a slap and a stern talking to?grin
How do I find you all on facebook? It would be lovely to put some faces to names.

KurriKurri Tue 27-Aug-13 17:56:11

Hi Picture <holds hand very firmly> - yes I had the whole caboodle like you are having and it looks a pretty long haul when you are at the start, - I think I had quite a few wobbles too smile

But it is doable - try not to look too far ahead and deal with each bit as it comes. Herceptin is not too bad - its not like conventional chemo, -it does have some side effects but they are very manageable and you can continue with life as normal when you are on it.

I think the things that helped me cope were firstly thinking 'good, they are throwing everything they've got at the bastard' grin and secondly trying to take each day as it comes - I knew that my treatment was going to take two years from start to end of herceptin (yours might be shorter because I think they run herceptin concurrently with chemo now and I had a lot of delays and buggering about with my ops ) so I sort of resigned myself to getting through that time period, and making the most of days when I felt well and resting on the days I felt a bit crap.
You will get there my lovely <hugs>

I'm still on tamoxifen, and I don't really notice any side effects now - you get some hot flushes etc when you first start it, but they settle down.

You will get teary days - we all do - I get them even now, and thats OK - a very shit thing has happened to you, and you need to go with your emotions, be kind to yourself when you are feeling down, have some treats ready to cheer yourself up, and plan something nice for when you feel well enough - even if its just coffee with a friend or a day out somewhere.

And you are half way through your chemo so you are doing well - you're on the home stretch now smile and honestly chemo/steroids make you feel miserable and down once that is finished your body will start recovering, and you'll start to feel 'normal' again. xx

Happy birthday dear LittleNed - what a big boy! - I can't believe it, have fun at legoland smile

PictureThis Tue 27-Aug-13 18:27:54

Thank you Kurri xx handholding has helped massively.

malteserzz Tue 27-Aug-13 18:28:49

I ordered a wig cap which came today, it's just like they've cut the foot off a pair of tights ! Not tried it yet. Did get round sainsburys without any disasters anyway

It does seem daunting when you think too far ahead, I try not to but it's hard. And at least we know they're throwing everything they can at it !

I've just befriended picture on Facebook and pointed her in the direction of some of you

Been peaceful here this afternoon, dd went to pizza hut and is now out somewhere with friends and ds went to his friends and football training, I've watched 3 downtons in a row, William has just died hmm

Hope everyone has a nice evening

PictureThis Tue 27-Aug-13 18:42:44

Bake Off and Midwives on the box tonight, that's my evening sorted.grin

PictureThis Tue 27-Aug-13 18:47:52

Gigs Amber and Ruby, I've sent friend requests via FB. please feel free to ignore if you wish, I will not be offended, but of course if you accept, that would be lovely.

kitkat1967 Tue 27-Aug-13 19:36:07

back from consultant - got all the details on the OP - fairly straightforward as no node clearance to be done (although he asked me if I wanted it even though he said there is no evidence there would be a benefit). Drain should only be in for 1 day so I will not need it left in when I come home. He decided when he saw me that I need a smaller skin expander than orginally planned blush.

Got no real answers on where we are going though and the impact of possibly splitting the chemo - he said there is no information on the impact of a break after 3 cycles then re-starting. Anyhow it will take 1 week to get all the histology back after the Op and 'the team' will meet to decide what the new treatment plan should be - that's all the surgeons and oncs together. Sounds like doing rads is even up in the air now. It doesn't feel like any of this is bad news but I just feel uneasy for some reason that I can't put my finger on.

amberlight Tue 27-Aug-13 19:40:33

Picture, that must be you on FB. Or I've just accepted a random friend request grin
I had 4 FEC, 4 Tax and then Herceptin. Tax was way easier for me, personally. No nausea, which I liked a lot. Herceptin is normally mild and fine for people. It hated me from day one so I couldn't stay on it for long, but my onc was happy with the amount I managed anyway.

Kitkat, brew? Anyone else for one?

kitkat1967 Tue 27-Aug-13 19:43:28

I have a wig cap Malt and wore it the 1 time I wore my wig - it felt secure and I had no probs with the wig slipping.

Picture - when I had my third chemo I was struggling a bit and the chemo nurse said it was a very common point for people to have wobbles so you sound perfectly normal to me. It is hard when you look at the treatment as a whole and see how long it will take (and I'm not even having Hereptin) - you just have to keep plodding on. What I find helps me is to think of other people I know (through work for example) and remember how often you think - 'crikey they're back already'. It's only us that feels it is taking for ever.

MAS - good news that the AS levels are sorted for T.

malteserzz Tue 27-Aug-13 19:57:36

So you could have the op and not have to have anything else Kitkat smile waiting for results is awful but good that it's only a week
Have you had a sentinel node biopsy ?
Just put wig cap on and it felt really tight but I'll try again tomorrow

PictureThis Tue 27-Aug-13 20:06:37

Yes it's me Amber, not a random nuttergrin. Watching GBBO, far more preferable to Holby Shitty where one of the nurses is being investigated for breast cancer....aaaagghhh it's everywhere FFS

kitkat1967 Tue 27-Aug-13 20:06:40

Malt - yes had sentinal node biopsy and they took out 2 nodes - the first had a micro-mets (2mm) and the second was clear. Both surgeon and onc agreed that there was no benfit in a full clearance and also that from a chemo point of view it would be treated as clear.
I don't know what to think about the rest of the treatment anymore - could be more chemo, rads, hormone therapy or just hormone therapy. Actually I'm quite upset as there is no longer a plan - I know this is irrational as I have not had bad news but I feel like I did at the initial diagnosis sad.

PictureThis Tue 27-Aug-13 20:24:15

It's not irrational KitKat, and the lack of plan is only temporary, concentrate on getting past the op first then there will be a plan. Big squeeze.

kitkat1967 Tue 27-Aug-13 20:46:59

thanks Picture - I know i just need to hang in for a while.
It's just we had a plan that I had bought into confused and knew exactly what was happening, why and when.

malteserzz Tue 27-Aug-13 21:02:58

You have to trust that they they know what they're doing and it's good that they've changed the plan rather than just carry on when things had changed

Watching gbbo I'm a bit behind after putting ds to bed, fancy making some breadsticks we make bread sometimes but never tried making breadsticks

kitkat1967 Tue 27-Aug-13 21:12:42

Malt - I make Salt and Pepper breadsticks from a Lorraine Pascale receipe I got off the internet
http://www.bbc.co.uk/food/recipes/big_fat_salt_and_pepper_59413
- they are really easy and the kids love them.

malteserzz Tue 27-Aug-13 21:23:48

I'll try those thanks Kitkat smile

topsyturner Tue 27-Aug-13 21:45:27

Just wanted to say a little something .

Look at you Malt !
A couple of months ago you were a gibbering wreck , and now you're handing out advice like the rest of us
Told you it would get easier didn't we ?
Xxx

trice Tue 27-Aug-13 22:02:50

Back into cycle number 5, I have put on half a stone on holiday! Must lay off the cake.

The new plan all sounds like good news kitkat.

Malt, have you seen those hat with fringe things? They look easier to wear, although I am sure you look great in your wig.

BetsyBoop Tue 27-Aug-13 22:09:40

kitkat that all sounds like good news, but I can understand your uneasiness at the removal of your original plan, I would be the same. Good that it's only a week or so after op for the new plan (and exciting that the new plan could potentially be nothing other than tamoxifen smile )

I'm having a minor wobble on the run up to chemo 4 on Thurs, as it's the first tax, so new territory again, just as I had got the FEC sorted grin Still that will be 2/3 through, the end is now in sight smile

malt - I've been thinking of work too this week as I start getting my own kids ready for back to school. It will be odd not being back to work for the start of the new term...I have been wondering about popping in to see my 1-2-1, but not sure if it will be the right thing for him or if I'm brave enough

gigs hope you keep sleeping better now you are off the steroids.

Speaking of steroids, I've got a bigger dose to take for tax and twice daily (was morning only on FEC) - when is the latest I should take the afternoon dose to have any chance of sleeping?

malteserzz Tue 27-Aug-13 22:18:36

Aww topsy thank you smile I would still be a gibbering mess if I hadn't come across you lot I'm sure !

Trice weight gain sounds good, you're getting stronger. I have heard of those fringe things I do still have hair that shows under a hat at the moment though

Betsy I'm worried about the tax too, glad you're doing it 1 st and can tell me about it ! I had twice daily steroids on fec and took them about 7am and 12. Are you having the injections ? Someone mentioned those but I'm not sure what they're for

kitkat1967 Tue 27-Aug-13 22:21:20

Trice - too much cake is easily done. I was thinking of making bread tomorrow (after GBBO) but then realised it would result in a lot of bread eating which is not good as I am less active than usual.

BetsyBoop Tue 27-Aug-13 22:28:33

malt on FEC I had a neulasta (sp?) injection the day after chemo - it's supposed to help your WBC count come back to normal quicker (doesn't stop the drop) - not sure if I'll get that on tax too. DH volunteered to inject me at home - if no volunteer I think they can send the district nurse!

kitkat1967 Tue 27-Aug-13 22:29:24

Betsy I'm sure your Tax will be fine - it sounds like there is less nausea but more aches which must be good news for those of us prone to nausea. And once you've done the that one you really will be on the count down.

I suspect I will be back on the chemo and will get Tax next time (just my own speculation) so if that's the case you and Malt can advise me. And I'll have upto date info on the mx Op for you (not for Malt of course!!).

foofooyeah Tue 27-Aug-13 23:20:05

Evening ladies - had a lovely long weekend and now down to earth with a bump.

Biopsy has confirmed that my cancer is much larger than they originally thought so at the 'big' meeting this morning they recommended I have chemo before surgery. Bit upset as I just want it out! But had a long chat with a very knowledgeable oncologist today and I THINK thats the way I will go. Still got the option of mx on Monday - but that will mean delaying chemo until thats healed and if I do chemo first I can then have the double mx and reconstruction surgery that I want (there isnt enough time avail in surgery double mx on Monday as originally just booked in for WLE).

This cancer malarky is a real goddamn rolercoaster isnt it - and this journey is going to be much longer than I anticipated

foofooyeah Tue 27-Aug-13 23:22:17

PS~; hats with fringes reminds me of thos awful plaid tam o shanter things with ginger hair attached :-)

foofootyeah that's exactly how I was imagining the hats! smile sorry you've had a change of plan, and I understand about wanting it out, but I think the thing to remember is that you will be getting treatment so it won't be the same as it is before treatment, where it's growing there without anything to stop it if you see what I mean? I'm sure someone more helpful who had chemo before surgery will be along in the morning! smile also good if you can get the surgery you want -otherwise would they do the other one later or not at all? The fewer surgeries you can get away with the better smile although blush I'm always thrilled when my surgeon decides to do another "examination under anaesthetic" as it's the best sleep I get since this damn surgery blush

kitkat it's no wonder you feel thrown. The op itself is a big thing to get your head round so quickly, even if you were expecting it later on. I had about a week between diagnosis and my first surgery. I don't know if you would be anxious about the op but if so the small comfort is that the sooner it happens, the less chance you have to build it up in your mind into something really really scary. Have you got all the things you need for afterwards? smile I recommend a puzzle book if you enjoy them as a good way to pass time in pre op and then if you can't sleep on noisy ward!

malteserzz Wed 28-Aug-13 07:51:29

Betsy I wasn't offered an injection, why am I not surprised with my lot ! Bloods were ok last time though

Foo foo it's normal to be in shock when planned have changed you have your head around 1 course of action then they change the goalposts, Kitkat is going through a similar thing. I don't know about you but chemo is the thing I was terrified of so good to get that bit over with ( the reality hadn't been half as bad as I feared )

Last day of the school holidays for my 2 so need to do a few last minute bits then take ds to a football match later. Need to make sure I've got things to do when they're at school so I don't sit in all day

agree with ruby there foofoo - the chemo will be sorting out the nastiness so it'll be shrinking as you go on
kitkat it must be very unsettling to have such a change of plan - no wonder you feel uneasy.
Swimming today, bit of work..those are my plans

topsyturner Wed 28-Aug-13 07:58:46

Morning All

FooFoo I know how you feel , I'm feeling the same way about my rogue node . "Just get the bastard out of me !"
But I have to put faith in my oncology team . They haven't steered me wrong so far !

DD has a friend arriving any minute (her mum has to go to work , TA at the girls school) , so DD and I are up at this un godly hour grin

DD goes back to school tomorrow , so it's good practice I suppose .
DS doesn't go back till Monday , so he's still snoring in his pit grin

Excuse me for a while , whilst I stagger off in search of brew

kitkat1967 Wed 28-Aug-13 08:04:35

Thanks ruby - I'm not bothered about the op itself - like you I treat it like a rest!!! but am annoyed that 3 months and 3 lots of chemo later we seem to be back to square 1. I'm not even sure if the chemo has been relevant and no-one can tell me the impact of stopping in the middle.
My latest worry is that I said no to the node clearance - this was based on the surgeon telling me there was no evidence of any benefit (in my case) but it was up to me!!!

kitkat1967 Wed 28-Aug-13 08:14:20

Hi foo - it seems I am going through the same as you but in reverse!!! - but just as unsettling. It seems my cancer may be smaller than originally thought (may be mainly DCIS) so my chemo has been abandoned and I'm have MX on Friday instead. We just have to trust the team but I did like having the concept of having the chemo first - you will be able to monitor how well it is working.

amberlight Wed 28-Aug-13 08:24:50

There can be an advantage to having chemo first; it lets the team examine how the lump responds. Then they can tailor the treatment far more exactly afterwards. So it can improve the odds, for some sorts of lumps. For other sorts it won't matter much because the chemo won't be the main defence.

Gigondas Wed 28-Aug-13 08:29:42

Staggers in with eyes propped open as up half night with mini. Need brew before blue badge assessment.

Hand holding for foofoo and kitkat . I don't blame you for any change in plan unsettling you. it's so important to feel know where you are in plan , it throws you when they change it. It took a while for me to trust my team again after they found an issue with my neck which had missed previously as not scanned area.

Fingers crossed now that assessment ok and not to upsetting.

kitkat1967 Wed 28-Aug-13 08:46:59

Good luck gig - what time is your assessment?

foofooyeah Wed 28-Aug-13 08:55:56

Just woken up on sofa - disturbed night so may need to borrow Gigs eye props. You can tell how out of it I am - just gave my 20 year old bazooka instead of bonjela for his cold sore - poor bugger was nearly in tears. Feel terrible - have told him in future never trust me and to read the instructions.

kitkat - yes does sound like you in reverse - it is very unsettling.
Having slept on it I think I will do the chemo. Not scared of it but hope I am one of the ones who gets away with milder symptoms. I do feel my BCN is really on my side - she made sure I saw a v v good oncologist yesterday who has been at the 'big' meeting that day.

Got to call my manager shortly and work out plan for work. I am very lucky and get full pay for six months but this treatment is going to take longer. I don't have the kind of job you can do part time so need to figure something out.

BetsyBoop Wed 28-Aug-13 08:57:36

foofoo I'm having chemo first and once I'd got my head round it I actually prefer it. It is very reassuring to see/feel the lump shrinking and it gives you confidence that it's also dealing with any stray bits floating round in your body. (and if not the onc can try something else) If you have it after you just have to trust it's working.

gigs good luck with your assessment later.

Lazy day here (I need a rest after galavanting of last few days!) as carpet fitters are here doing DSs new room.

kitkat1967 Wed 28-Aug-13 09:18:44

foo - is there nothing you can do part-time. I also get full pay for 6 months and like you realised that this was going to take longer than that. I have chosen to keep working and do about 50% hrs but all from home - my work were really good and allowed me to chose what to do. My original role could not be done part time but I'm doing some 'internal' work that I really enjoy so maybe there is a way you can work something out. The summer holidays have been fine but when the kids were still at school I really needed something to do during the day.

Gigondas Wed 28-Aug-13 09:35:05

Eek for ds betsey.

Assessment done-lady was lovely and took few minutes to say yes. Am so pleased as this will make difference on bad days on me being able to get out or not. She also suggested that apply for mobility allowance to customise car.

kitkat1967 Wed 28-Aug-13 09:43:46

wow gig - that was fast work and really good news for you.

PictureThis Wed 28-Aug-13 10:14:01

Wow Gigs, all before 9.30! I've only just got dressed! Great news about your badge, as you say it will make a huge difference to you on your not so good days. Definitely pursue motability allowance too.

Bloody steroids interferred with my sleep again last night, I was awake from 3-5.30 angry. However, no nausea overnight this time....marvellous. Hoping to catch up up with some z'ds before the minis are returned from grandmas today.

malteserzz Wed 28-Aug-13 10:20:11

That is brilliant gigs, thought you had a bad night as I saw you on FB at 3am !

I've also just got dressed ! We've been so lazy this holiday need to get in a routine tomorrow, luckily mine take themselves off to school so if I don't feel like it I can put off getting dressed till they've left.

Trying my wig cap today it is literally like the foot has been cut off a pair of 15 denier is that what other people's are like ?

kitkat1967 Wed 28-Aug-13 10:43:16

HI Malt - that is exactly what mine is like - but it does work well.

malteserzz Wed 28-Aug-13 10:59:42

Thanks Kitkat, it's made a ridge on my forehead so I've moved it up a bit. Am getting a dab hand at getting my wig on now !
Are you all sorted for things to take into hospital ?

BetsyBoop Wed 28-Aug-13 11:07:27

that's great news gigs smile

malteserzz Wed 28-Aug-13 11:28:41

Now it's pinged off ! Thankfully was at home !

kitkat1967 Wed 28-Aug-13 11:34:02

Malt - think I'm sorted - decided I have enough PJs for 2 nights - just need to iron them so I look presentable. Other than that I have my greys anatomy and a couple of books so think I will be OK. Meeting with BCN at 3pm for pre-op stuff so may need to get something after that.
Are you saying the wig pinged off (complete with cap)????? grin

topsyturner Wed 28-Aug-13 11:43:25

Great news Gigs
I have a blue badge too , due to my inability to walk the length of myself without getting out of breath or peeing myself .... grin
As for the notability , I think that comes under the DLA heading .
Get Macmillan to help you fill out those forms , as they are particularly nasty hmm

Dilemma time .
2 , 10 year old girls .
Want to walk to sweet shop without adults .
Have to cross 2 busy roads .
1 road has pelican crossing .
2nd road has foot bridge .
Do I let them go ?

topsyturner Wed 28-Aug-13 11:44:19

Motability even (although ....)

Malt that made me giggle !
Sorry grin

topsyturner Wed 28-Aug-13 11:44:57

Kitkat take spare pjs incase you leak !

malteserzz Wed 28-Aug-13 11:49:15

No just the wig cap underneath the wig !
Topsy I would let them go if they are sensible. Have they got a phone they can take ? My 10 year old has been all over the village this summer and has been fine

malteserzz Wed 28-Aug-13 11:50:24

And he's a boy and not particularly sensible !

kitkat1967 Wed 28-Aug-13 11:55:18

Topsy - i also think 2 together they will be fine.

Malt - oh - not nearly so entertaining I'm afraid wink

I have to go to shops after my appt (to pick up last of school uniform) so will look at PJs - I looked online and everything is very wintery (hospital is very hot) and not many styles with buttons but will see if I can find anything.

KurriKurri Wed 28-Aug-13 11:56:31

Morning all - wow you have posted a lot since last night! - I was out and home late - so am trying to catch up now.

Yay for blue badge Gigs - so glad you got a nice person - I'm sure most of them are nice, but you do hear stories about the odd jobsworth.

Picture - hope you are feeling a bit better today xx

Foofoo - there are several people on here who have had the chemo first then op, - so it is obviously considered to be good way to go (although I totally sympathise with a) get the bastard out and b) being all psyched up for an op next week. They keep flinging hard decisions at you in this game and you will always think 'have I chosen the right path' but these things are decided by a team of experts and they will have thoroughly discussed your particular tumour and picked what they think will suit you best. smile

topsy - Are they sensible on the road? I would let them go - hard as it is - with strict instructions that they wait until cars have definitely stopped at the pelican, before crossing. They should be OK on the footbridge.

have to say I went out for a walk with DD the other night and we went past a river, and she said 'Oh me and Emma and Maddie used to go in that river and paddle up to our knees - and I was shock and 'that was a crazy thing to do - its really unpredictably deep in places' - DS has also in the past revealed 'things he didn't tell me about at the time because I'd have said 'no' hmm

Those anecdotes weren't very helpful were they/ grin

off to read all you posts, then watch last nights bake off.

Gigondas Wed 28-Aug-13 15:08:09

Back now from very nice lunch and shopping trip tho feeling somewhat tired. I find can walk ok but my back is very stiff ( no shock). But did get some baking bits in Lakeland grin. And kids liked trip to toy shop.

Yes am pleased about blue badge as agree kurri that thought might get jobs worthy type as my cousin did. That's a good thought about Macmillan topsy - I had a brief skim of website and can see how it gets emotive.

Back to catching up on archers - there are some very good/annoying story lines at moment . Know mas listens but any other listeners.

Malt smile at wig slip but I did find that once got used to the cap.

Have ordered a puzzle and got something to keep it safe when not using it. This is part of my attempt to get my left arm/hand used to doing stuff again. It has taken real set back from last op as they bent it all out of position which is frustrating as was starting Physio on it before op.

Got to keep eyes open now . I do think its steroids that muck sleep up - the 3-5 waking pattern sounds very familiar.

Gigondas Wed 28-Aug-13 15:09:10

Sorry picture not kitkat blush.

Kitkat -is there nothing in m and s? I got few bits and pieces in there.

foofooyeah Wed 28-Aug-13 17:02:32

malt - sorry but I did actually roar with laughter at the flying wig image - slightly a shame it was just the cap.

glad you got a quick answer Gig

thanks again everyone for your thoughts - did go for pre-op today just in case but will make final decision tomorrow.

Work manager referring me to our health services - its a huge company so they must have helped a lot of people before so hopefully can advise. She is also going to see if there is extra months of pay available to cancer victims.

Being highly amused here by 9 year old son and his friend - chatting to their frinds on skype - they know far more abiut technology then me.

I have never listened to the archers - think it may be time to start.

Lilymaid Wed 28-Aug-13 17:24:56

Back from my singing course - great as no one knew I had cancer or (I suspect) realised I was wearing a wig.
4th chemo tomorrow - so not looking forward to the next week of feeling grim. This time I have a new smart water jug and water bottle to encourage me to take in more fluids.
DS2 back home looking tanned and super fit. He doesn't seem too fazed about my cancer - but as he has leukaemia, he's been to oncology wards/waiting rooms and seen it all. His main comments have been about the fact that I'm going private and he has to put up with the long waits at our local hospital.
Fully conversant with the Archers - have been listening to it (with a few breaks) since I was a baby!

Gigondas Wed 28-Aug-13 17:43:39

Foofoo will convert you smile. Glad that ds ok with it (it must help as he has his own experience lily). Glad singing course was good.

How long do you think can spin pat and tony not knowing about Helen's lovelife out?

kitkat1967 Wed 28-Aug-13 17:47:20

hi al - back from an afternoon of appts and much more cheery today smile

So.... chemo nurse said whilst not common it is not that unusal to have 3 cycles then the Op - both nurses there today fully expect me to be back for another 3. She also said that the break will not impact the effectiveness.

The BCN explained that my tissue expander will be expanded in the Op so I will not be flat afterwards - it may not be possible to expand it fully in one go and if not it will be topped up in a few weeks time. So I don't need mx bras - just a couple of sports bras and if the expansion is not complete i have been given a softy and can just use the cover part of it if required.

All in all I feel better about the change to the plan (and lack of new plan). I also found out that in our area the team meet on a weds morning to discuss the cases so that may explain why i got a call last weds to cancel my chemo. It was re-iterated that no chances would be taken and I would get all the treatment that is appropriate.

Oh and may be out on Sat if all goes well.

Lilymaid Wed 28-Aug-13 18:09:42

How long do you think can spin pat and tony?
Interminably so we have to put up with their whines about everyone else!
How long until Kathy defects to Grey Gables? Surely that must happen with all this criticism from the horrid Martin and the convenient holiday for Caroline coming up (am presuming that the friend roped in as temp manager will mess everything up and molest every woman under 80).

that all sounds encouraging kitkat - you sound a bit happier about things now I think.
I listen to the Archers most evenings and then the omnibus and Archers extra - I dislike many of the people on it but still listen. Helen had better come up with convincing jewellery from her classes grin Tony and Pat will go ballistic when they find out what's going on.
lily how lovely to have gone on a singing course !
T and I swam today - my new device has arrived and I did 52 lengths plus 4 to warm up.
E mailed onc's secretary to ask about def. seeing him - no reply as yet.

oh yes, am longing for Kathy to tell horrid golf boss to stuff his job

malteserzz Wed 28-Aug-13 18:16:28

Kitkat glad you feel better about things smile
Really chuffed as watched ds play football and his friends mum asked me if I'd had my hair done and said it looked lovely !
And it didn't blow off in the wind grin

kitkat1967 Wed 28-Aug-13 20:10:18

well done Malt - see we all told you it was lovely smile

jchocchip Wed 28-Aug-13 20:35:10

Well done malt.
I'm only catching an occasional bit of the archers these days. Always used to read the synopsis in mustard land but these days I waste time on mn and fb. My laptop is being a pain. Takes hours to install updates so I want to throw it out the window! Still on phone. One day will manage to do all the stuff I'm supposed to be doing on pc.

jchocchip Wed 28-Aug-13 20:36:32

Its not the same without nigel sad

Gigondas Wed 28-Aug-13 20:37:27

That's great malt but your wig is fab.

Kitkat - fingers and toes crossed for early release but sounds like no reason not to . Hope you have luck with pyjama hunting.

I agree that setting up something for gg- temp bloke showing Signs of being an idiot. And Martin manages to make Kathy look sympathetic. I suspect you are right Helen thing will drag.

Back to masterchef- no sign of waking from mini gig so fingers crossed for tonight. She has broken the poor nanny after last night (who is now appreciating the 24/7 nature of kids).

PictureThis Wed 28-Aug-13 20:51:01

Kurri I feel much better today, I had a really good cry and you're right, one day at a time. Thank you again for the hand holding, truly, thank you.
Kitkat very glad to hear you are feeling happier about things. Will be thinking of you on Friday and sending you lots of positive vibes. Before my op the anaesthetist gave me some super sedation so I went to theatre feeling very chilled off my face.
Malt has your hair actually totally gone yet? If not, when it does the stubble acts like velcro so you don't need a wig cap and it's much cooler. I agree, they do look like cut off of tights, in fact if they were more stretchy they could be used for a bank jobgrin.
Gig I've resisted napping this afternoon in what is hopefully not a futile attempt at getting a full nights sleep tonight.

Gigondas Wed 28-Aug-13 20:55:41

Picture I am glad cry and handhold helped. Hoping you get a good nights sleep. I am afraid did have little doze but hoping it isn't too disruptive.

not fancying masterchef medieval feast much.

malteserzz Wed 28-Aug-13 22:01:22

I still have some hair picture it's just very very thin, seems to be ok without the wig cap anyway

Hope everyone gets some sleep. I haven't slept through the night since dx but think I'm used to it now, normally I wake about 2 and then again about 5. I'm off the sleeping tablets now though

Agree about the medieval feast yuk
Watching don't tell the bride now

LadyBeagleEyes Wed 28-Aug-13 22:43:17

I've been told I'll probably have oral chemo.
Dos this mean it'll be less likely I'll lose my hair?

Gigondas Wed 28-Aug-13 23:01:57

Don't know lbe but I think if its same type that mas is having , hair loss isn't a side effect.

probably won't have hair loss ladybeagle - maybe some thinning.
Medieval pike looked pretty horrid.

malteserzz Wed 28-Aug-13 23:09:32

I think it can thin lady but you don't lose it completely, someone will know better than me though. When are you starting ?

Gigondas Wed 28-Aug-13 23:28:50

The pike was vile. Found new bad education on iplayer .

BetsyBoop Wed 28-Aug-13 23:29:22

picture - glad you are feeling a bit better today

kitkat - good to hear you are feeling a bit happier with the re-plan

malt - that is why wigs terrify me, the thought of them slipping and falling off I was traumatised as a small child by an uncle with a very bad toupee grin Yours looks fab though, if I wasn't over half way I might almost rethink seeing how natural yours looks!

lily singing course sounds fab, good luck for chemo tomorrow - my fuzzy brain is getting mixed up - weren't you T-FECing? If so we are swapping in the oppisite direction tomorrow as I'm on no. 4 FEC-Ting smile or was that someone else, my memory really is as hopeless as a goldfish's at the moment

gigs picture malt and anyone else struggling, hope you all sleep well tonight.

Urgh I hate steroids, took them at 2pm, but I'm wired to f**k and not expecting much sleep for the next three days... and then the crash when they stop...(The dose they have put me on for tax is four times the dose I had for FEC and that was bad enough - onc kept it as low as possible on FEC as it affects my glaucoma, but I don't think there's much choice with the tax...)

LadyBeagleEyes Wed 28-Aug-13 23:29:27

First appointment on Wenesday 4th.
I've so much going on in my head at the moment,and all I can think of is my last few years being ugly and bald.
I just feel so angry, my original BC was ten years ago and I had my mastectomy and did my 5 years tamoxifen. I thought it was all in the past, but it's now in my lungs and liver, though I'm being treated with all the BC drugs they can throw at me apparently as that's where it originated from as I'm hormonolly receptive.
I thought I was cured, but the bastard has come back.

It's crap isn't it...am thinking you will probably have capecitabine as that is used for secondaries from bc,and so you'll keep your hair.
I was 3 years down the line after treatment when they found mets in both lungs - told to stop tamoxifen as it wasn't working .

I watched Bad Education at lunch time with T - it made us laugh anyway.

lady I'm sorry. I don't have anything wise to say, I wish I did. Cancer is shit. It really is. Treatment will have improved since you were treated last time and I'm sure they will throw everything they can at it. Have you seen amber's posts about supplements that can also help? She really knows her stuff.

Do you know the name of the oral chemo? If it's capecitabine, then MAS and trice are having that. I also had it alongside another drug for my bowel cancer. It doesn't usually cause major hair loss, possibly just some thinning. The main problems I had from it were diarrhoea and very dry skin on my hands and feet, both of which can be helped with drugs/creams etc smile

Goodnight everyone x

BetsyBoop Wed 28-Aug-13 23:56:05

Oh Lady, I don't know what to say other than<hugs> and yes it is crap and unfair and a bastard disease.

Unfortunately we can never be "clear" of it... DHs aunt was similar to you and 14 years clear when they found mets on her lungs, it just ain't fair...

I'm sure amber will be along shortly with her usual reassurance and stats that the majority of the time now mets can be treated more as a chronic illness if the can fine they right drug regime.

trice Thu 29-Aug-13 00:00:40

I know exactly where you are coming from LadyBeagle, although I only managed five and a bit years. It waited until I thought I was safe and then pounced. Stupid, obscene disease that it is.

The capecitabene I take is very good, not too many side effects once you are in the swing of it and it has really shrunk my tumours quite quickly. My hair has thinned a bit but looks fine. The worst side effect is sore feet.

I feel very sad about my disease but stranglely less terrified. The thing I was most scared of has already happened. Now I just have to try and live as well as I can for as long as I can. And I can feel sorry for myself if I like as it is a truly shitty situation.

BetsyBoop Thu 29-Aug-13 04:41:22

Wideawake.com...

I hope everyone else is sleeping

Gigondas Thu 29-Aug-13 07:04:35

brew For the Vietnam steroid vets ( my crap joke as I used to feel so wide awake and mad on steroids during chemo that rreminded me of things they allegedly gave soldiers in Vietnam).

Lbe- I know exactly what you mean about ending up bald and ill. That thought went/goes thru my head a lot about chemo and I really hate it. Hair loss just seems to be one more horrible scar this bloody disease leaves on you.

But I do agree with trice that this can be treated and you can live with it ( I don't have bc but soft tissue sarcoma but its in my lungs and bones too).

Mini gig demanding milk so better go.

malteserzz Thu 29-Aug-13 08:18:16

Lady sorry to hear that hmm seems like it does come back at some stage for most people despite all the treatments

Waved both of mine off to school smile
One getting the bus for the 1st time. Seems very strange not to be going back to school myself but trying not to dwell on it
Not much planned today, might go and look for a hat and see if I can spend my next voucher, had £50 for my birthday, went last week and couldn't find a single thing I liked!

Gigondas Thu 29-Aug-13 08:23:15

Think shopping sounds way forward malt.

Big gig not back til next week but finishing her holiday diary. this is my least favourite task as its like pulling teeth (not surprising as she is only 5).

Got good friend coming over with her kids for play date and catch up. Mr gig also back later this morning -most importantly is bringing yum American coffee.

amberlight Thu 29-Aug-13 08:26:33

Useful research? OK...fresh out of the box this week...

www.ncbi.nlm.nih.gov/pubmed/23863655 is the latest combination for treating liver metastasis, they reckon. S-1, vinorelbine and medroxyprogesterone are the chemotherapies in question. News just out. "Tumor markers were normalized and liver metastases were shrunk significantly in both cases ... it can be continuously implemented over a long period of time while maintaining high QOL without serious adverse events". An early-days trial...but if standard chemo doesn't work, we now have these sorts of combinations available on some trials.
So...those thinking they're about to cop it...you may not be after all. Talk with thine Oncologist.

The friend of mine given a couple of weeks to live, three years ago, is now on her fourth set of chemo types and still responding nicely to them. Not everyone will find the same thing of course - but they really are getting there. She's still running a small town and gardening and whizzing off to see family.

Meantime, many good oncs are happy for people to take Vitamin D, good multivitamins and minerals, daily dose of aspirin in small quantities <read label, take with food etc, check with doc or pharmacist about drug clashes for that one> lactoferrin, a small handful of blueberries and raspberries fairly regularly, curcumin, omega 3 oils. And the recommendation continues to be to sleep in a room darker than deep space and to have a fab time with friends and family (since it really does boost the body's defences). All of the above does a bit to slow things down, in the tests. None of it is a cure or a replacement for proper chemotherapy treatment, of course. <I'm not a doc. Talk to your team etc etc. > But every little helps, I reckon.

And talk to any team about the new radiotherapy units like Cyberknife, which can zap many otherwise untreatable tumours.
Plus talk to teams about ordinary surgery, since there's more research coming out showing that if they can operate on mets, the outcomes are better. <obviously if it's tons of small ones in tricky places, they can't>

Phew. Hope that helps.
And good morning everyone.
<wonders if the greeting really should be at the start, not the end>
<socially clueless woman alert>

BetsyBoop Thu 29-Aug-13 08:40:26

>> Vietnam steroid vets grin yes feeling slightly more deranged than normal today grin

See I knew amber would pop in with great info as usual smile
While we are talking supplements amber - when are we supposed to start taking them? - after chemo? Not sure when to start quizzing my onc on this. I have also been reading good things about turmeric and green tea - do you know of any recent research on those? (doh, just realised turmeric contains curcumin I think? - which you've already mentioned)

Happy shopping malt

enjoy the coffee gigs

Just killing time here before no 4 this afternoon. Have been awake since 02:30, so feel like I've done a day already!

trice Thu 29-Aug-13 08:56:03

Malt, most people are cured and it doesn't come back. Let's hope you are one of those.

I take all the supplements, do the exercise, keep my room dark (must give up phone in the evening, it's the worst form of blue light). I want to get dd into secondary school which is another four years, I can't leave Dh to deal with periods! Obviously I really want to live to 80, but my optimism can't stretch that far.

Gigondas Thu 29-Aug-13 09:16:03

Whilst I lose will to live supervise this diary , I can jot down supplements etc i take from dietician (Jane Clarke so is well respected and works with my Oncologist). It is saving me from doing my impression of a tiger mum with big gig.

Green or especially white tea- evidence that anti oxidants in it are not just good for helping immune system but help chemo be absorbed better.

Turmeric - again this helps immune system as does something to inflammatory Markers (you can tell I am not a scientist as details over my head so need amber grin). Rather than supplements, I was told to put teaspoon of turmeric in about half an espresso cup of coconut milk (warm slightly so easier to drink) but with some black pepper in it . Need pepper and coconut oil to absorb turmeric. I was told drink this 4 times a week.

Both of above were ok chemo.

Pro greens - I have seriously expensive one called e3live made from seaweed that is meant to do miraculous things -e3

magnesium -300mg morning and evening-helps with cramps and insomnia as magnesium deficiency proven to cause sleep issues.

Selenium- 200mg good for immunity.

Zinc drops with vitamin c- good for wound healing zinc

1000mg evening primrose and coenzyme q10- good for joint/muscle pain. Similarly cinnamon tea shown to reduce inflammation.

300mg milk thistle to clear liver out 3 per day- not while on chemo but this has been shown to have big benefits.

Solgar gentle iron 25mg- not while on chemo but good way to build iron.

Vitamin b supplement - solgar again.

Udos choice super 8 pro/pre biotic (not on chemo)

Aloe Vera juice- 30/50ml three times a day as soothes digestion (very soothing on chemo and seems to balance the diarhoea or constipation you get on chemo)

Propolis supplement if its cold season or manuka honey 25 plus just eaten raw.

As you can see, I rattle....

malteserzz Thu 29-Aug-13 09:28:45

Is wine and cake not helpful too gigs
How much has she got to write for this holiday diary ? Can you try and do little and often if she's not keen ? Or bribe with chocolate buttons!

Betsy good luck for number 4, I wonder what colour the tax is I hate the bright red in the fec

Trice I hope you have many more than 4 years

malteserzz Thu 29-Aug-13 09:30:34

An waiting for cleaners to come before I go shopping, not sure what time they are coming but I don't like sitting here while they clean around me grin

trice and amber are right - most people don't have cancer returning or metastasising so don't go down that path malt
I also think that cake/wine/choc in moderation are perfectly fine for keeping one feeling like a normal person. I don't take any supplements (though used to before first dx) but generally,apart from cake/wine/choc eat pretty healthily and am embracing exercise by my swimming and onc. has always said that being active is by far the most important thing,above diet. He has written many papers and is top man,so trust his judgement. I am also very much into getting on with things and not thinking I'm ill - but everyone has their ways of dealing with it.
The holiday diary thing just transfers into homework/projects etc as they go up the school gig - even now at 16 am having to cajole the boy into organising his new folders and getting his reading/assignment done - it's bloody hard work. We did do a holiday diary when he was in yr 4 which won him a boxed set of Michael Morpurgo books,so was worth the chivvying.
Righto, must do some pesky dusting,then post office beckons.

amberlight Thu 29-Aug-13 11:33:22

I took supplements all the way through chemo, with the blessing of my Onc and team. But I'd always ask a team for their opinion, since different people have different needs and different medical treatments. I also drank a glass or two of wine on a regular basis, which many oncs have been eek about with their clients. But my bc isn't a hormone one so there's not a jot of evidence that giving up wine made any difference for us.

At the moment 9 in 10 women with breast cancer are going on to be cured and die of old age/something quite different. But of course they mostly wander off and we don't hear from them after a few years. So any message board will have more people who are having a trickier time. The odds are still jolly good. And with the genetic stuff happening now, I reckon within 5 years we will have got it to 98% cured or held at 'long term nuisance', which will be a blessing for the 98%. But not a great result for the other 2% hmm

KurriKurri Thu 29-Aug-13 11:51:50

Juts popping on to wave to all and wish everyone a good weekend, and good luck for those having treatments over the next few days. <Hugs> to those having a bad time atm. xx

I'm going AWOL for a few days - I'm involved in an art exhibition with my art club, and I'll be out all day until latish every night until Sunday - stewarding and hob nobbing grin and throwing a cheese and wine party for local big wigs hmm (Its all part of a town festival and general festivities and goings on, - Morris dancing may feature!) - so probably won't get a chance to post.

But thinking of you all and sending much love - see you on Sunday evening smile x

kk have a wonderful time hobnobbing grin we'll miss you...much love xxxx

BetsyBoop Thu 29-Aug-13 13:21:12

amber and gigs - Thanks for the info on supplements, I'm making a list!

Have a great time KK

Off to be poisoned shortly, see you on the other side smile

amberlight Thu 29-Aug-13 14:06:37

Good luck Betsy!

malteserzz Thu 29-Aug-13 14:14:25

Yes good luck Betsy hope it goes smoothly
Been shopping, bought a hat for windy days when I'm watching football, walking etc
Also got some sunglasses in the sale as mine have broken
Dh pleased, thought he was having the snip on Saturday but it's only a consultation so he can pick his new car up without being sore!
Just watched another downton preferred the first series it's getting a bit silly but still enjoying it

reallyreallyworried Thu 29-Aug-13 14:37:49

Hi all

I am officially having my first major wobble, since being diagnosed 3weeks ago tomorrow sad

I have an appointment with my surgeon tomorrow to discuss the lumpectomy and removal of some lymph nodes. According to my breast care nurse there are two ways that they can do this, depending on how I would like my breast to look afterwards. In all honesty right now, I don't care how it looks I just want this lump out of my body sad

I know how pathetic I am being, especially when I read through what some of you are going through! I just wish there weren't any decisions to make, I wish the surgeon would just tell me what she needs to do! In fact I wish I could go to sleep and wake up after the surgery, when it's all done. Although even then it's not over, then I have to wait to hear what my treatment plan is.

I have managed up to today, carrying on like nothing is happening, but now it seems so real. I have cancer sad and it's not just going to disappear if I don't think about it.

I'm sad that I am going to be missing work, because right now I just want to carry on as normal.

Sorry for the long winded moan! Now to snap out of it and write my list of questions that I want to as my surgeon and BCN tomorrow. Any thoughts of things that are important to ask, would be gratefully received. Right now my mind has gone blank, and as I am going by myself tomorrow I haven't even got someone else to ask questions that I might of forgotten.

Hope everyone is having an okay day. Thanks for listening.

Xxxx

amberlight Thu 29-Aug-13 14:50:09

Hi Really
If you are so minded, please tell me what you know about your breast cancer so far. How big, what sort, where is it in the breast? What have they said? Then I reckon a few can give you some decent advice if we've been through similar for similar ones.
A wobble is entirely natural. It's a heck of an eek to find out it's cancer, because of course everyone thinks they're a gonner. But, as we know, 9 out of 10 are still fine in five years and probably much much longer, now. The more we know, the more we can reassure you or help you know what to ask.
Meantime, have a brew. Some out for everyone else too.

good luck betsy x
reallyreally a hug for you - you'll get through it though. Remember that the surgery will remove all of the cancer it will be out of your body-and if any stray bits are in the nodes then they can be treated very effectively too. Whereabouts is your lump ? Mine has left a definite dent but frankly am not bothered really -the scar is really neat which is good.
I think when things get real,like surgery or chemo,then it all becomes quite scary,that's natural. Really hope tomorrow goes well and take the time to think about the options they give - remember life does go on afterwards and you might be pleased that you picked the op with the most pleasing results. Am not meaning to be glib,just wanted you to know that you'll come out the other end.

malteserzz Thu 29-Aug-13 15:13:30

Really you're not pathetic at all x
I'm glad they didn't give me any options with my treatment, they just told me what needed to be done. I had a lumpectomy and sentinel node biopsy and my boob looks the same size and shape just have a near scar and another under my arm. I said just take it all off I think when you have cancer you don't really care what it's going to look like but they said a mx wasn't necessary
The op was fine, I felt groggy the next day from the GA but had lots of painkillers prescribed which I didn't need.
They do have to make sure they get clear margins with a lumpectomy it seems quite common to have to have more removed because they haven't achieved this, you could ask about that

kitkat1967 Thu 29-Aug-13 16:13:42

Hi Really - I know what you mean about choices - it would be much to just be told what needs to be done.

I made a choice on Tuesday not to have a node clearance - I do hope that doesn't come back to haunt me sad.
And I suspect in a couple of weeks I will be given a choice whether to complete my chemo course or not - at the moment I'm hoping it will be clear cut and they'll just tell me but I suspect not.

PictureThis Thu 29-Aug-13 16:58:01

ReallyReally I am pretty sure we all felt the same as you initially. I remember wanting to run away, out of my body and leave all the madness of the diagnosis and the prickle of fear that was becoming all too common a sensation, behind me. It does change, you do adjust. As kurri wisely said to me the other day when I was having a wobble, "one day at a time". These wonderful ladies will see you through.

BetsyBoop Thu 29-Aug-13 21:00:18

really - as everyone has said it's normal to feel like that, we've all been there to varying degrees. One day at a time, this too will pass and all that. smile

Well 4 down 2 to go - uneventful apart from a bit of a wait for treatment - but as the onc nurse explained due to the BH on Monday they are trying to fit 5 days worth of patients into 4 days this week...

Saw my onc today too and he still sees happy with how things are progressing, my "bad" boob is obviously visibly smaller than my "good" boob and the tumour is a lot softer now, both of which he reckons are signs the chemo has been doing its job. He has also okayed me popping into school just before my next chemo so I can catch up with my 1-2-1 (I'm a TA) which will be good

kitkat1967 Thu 29-Aug-13 21:55:12

Good news Betsy. Is the nausea less than it was on FEC? You're 2/3 done now.smile

malteserzz Thu 29-Aug-13 22:14:07

Kitkat if you really needed the node clearance they wouldn't have given you the choice, tis natural to worry though I'd be the same
Betsy glad that's another one done smile
I'm off to bed, shattered after getting up at 7.15, all holiday I've gone back to sleep after dh left for work till about 9 !
Night all x

BetsyBoop Thu 29-Aug-13 22:15:36

only feeling the teeniest bit icky kitkat and that's probably all in my head still on the emend/ondanestron/cyclizine combi, my onc isn't taking any chances!

Lilymaid Thu 29-Aug-13 22:26:25

I've also just had chemo no 4 (though of 8 rather than 6 so will only be finished th e cycle in Decemer!)
I'm drinking loads of water to avoid being as miserable as I was last time round.
Hope those currently taking steroids get a decent night's sleep.

kitkat1967 Thu 29-Aug-13 23:02:45

Betsy - when my onc canned my chemo I woke up the next morning with absolutely no nausea for the first time in weeks so it just shows how much can be psychological!!
With my positive head on I have convinced myself that if I go back on chemo it will only be for 3 cycles and after having a break it will be like just doing a mini set of chemo.

reallyreallyworried Fri 30-Aug-13 05:50:25

Thanks for the support and reassurance that how I am feeling is 'normal'. It's really helped.

Managed to get a bit of sleep last night. Will be glad when I have spoken to the surgeon and know what is going to happen. I think my anxiety comes from the unknown!

Anyway I should try and get a little more sleep. Good luck to those of you having surgery or treatment today. Sending positive vibes your way smile

Xxxx

kitkat1967 Fri 30-Aug-13 06:04:08

Morning. Am wide awake even though alarm set for 7 - last food is 7:30 so am hanging on for a bit to have my brekkie.

foofooyeah Fri 30-Aug-13 06:08:00

reallyreally - you hit the nail on the head when you said anxiety comes from the unknown. In the early days after diagnosis there are so many tests and discussions its actually a relief when treatment is decided and started.

BetsyBoop Fri 30-Aug-13 06:09:05

>>I think my anxiety comes from the unknown.

Nail on the head there really smile The wise ladies here said the me it get easier once you have a plan, and they were right. Once you start on the plan you get so busy putting one foot in front of t'other every day your anxiety lessens again. There will be bumps along the way (like when you get you post op results and the next bit of you plan can be decided) but it really does get a bit easier.

For qu a friend of mind asked her I onc (when given choices and couldn't decide) "if it was your wife in my shoes what would you advise her to do?" which I thought was a cool ( if cheeky!) qu.

Has your BCN talked through the possible scenarios from a lumpectomy and SNB? Ie ideally wanting clear margins and no nodes and what will happen if you don't get that result?

I find it really helps to jot down qus (and their answers) so I don't forget stuff.

Well I managed to sleep from 10pm to 5;30am so no steroid insomnia here last night. smile

foofooyeah Fri 30-Aug-13 06:10:45

Went to clinic yesterday and confirmed that I would be starting chemo (FEC) on 11th Sep. Glad now have decision and date.

Lovely day planned with pub lunch with a friend who is over from Italy then another friend coming round this evening - though as I woke up at 5am (as usual atm) may have to fit in an afternoon nap/

BetsyBoop Fri 30-Aug-13 06:12:09

After my book long post I completely forgot I'd logging in originally to say Good Luck to kitkst thinking of you today ;)

foofoo x-post but heart minds and all that re nail and head ;)

BetsyBoop Fri 30-Aug-13 06:14:09

-hesrt great , damn chubby fingers phonegrin

kitkat1967 Fri 30-Aug-13 06:16:56

Good news that you managed to sleep Betsy. Am watching closely as am convinced that I'll be on T at some point.

BetsyBoop Fri 30-Aug-13 06:18:04

Definitely make the most of the days before chemo foofoo great you have a start date though (well not great, because great would be not needing it at all, but you kwim !)

BetsyBoop Fri 30-Aug-13 06:19:57

And no icky feelings this morning either kitkat so fingers xd that continues smile

malteserzz Fri 30-Aug-13 07:00:20

Morning
Foo foo good that you have a date now and you know what's happening, I've been fine on fec hopefully you will be the same
Betsy glad you slept ok and are feeling ok so far
Kitkat enjoy your breakfast and best of luck for today x will you be able to update us from your hospital bed ? If not let us know when you are safely home.

Hate getting up at this time ! Going to see a friend for coffee this morning and going out for a meal tonight smile

kitkat1967 Fri 30-Aug-13 07:18:36

HI Malt - how are you finding things now the kids are back at school? Mine are back Tues/Weds next week and am not looking forward to it as i have enjoyed having them home. I found it quite lonely before the summer hols - they go to school really early so it is a very long day on my own.

Betsy - glad you have no sicky feelings - what a difference to FEC.

I will have wi-fi in the hospital so will probably be on with updates this evening. Am all organised - got some work to do this morning then heading off around 10:30 i think.