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38th tamoxifen - waiting for summer in the bus shelter

(988 Posts)
Gigondas Sat 15-Jun-13 12:01:16

New thread.

Yay! We filled the last one quickly. Big thanks * gigs* as now chilling in bed listening to first ever Now playlist including one of my all time faves. Red red wiiiiiiiiiine grin

Gigondas Sat 15-Jun-13 12:04:52

Spotify is good for that isn't it?

malteserzz Sat 15-Jun-13 12:08:24

Hellooooo !

Yes I love it, got the playlist here if anyone else is interested smile

Hi malt <boogies around>

notJenkins Sat 15-Jun-13 12:11:18

Just marking spot have a lot of catching up to do. Bloody work gets in my way of mn ing !

hooray- well done gig!
Brilliant news about the loss of pump hnd and wise to get back into work/take a break from hospital before the next bit.
Bloody raining here and we;re meant to be going out to a garden later.
Cat is fretting as she doesn't know what to do with herself.

Copthallresident Sat 15-Jun-13 12:45:14

Well done gigs for spotting the impending doom for the thread grin not like the nincompoop who finished off the last but one thread.......

HerNextDoorAt21 Sat 15-Jun-13 13:25:21

Gigs you do get used to the noise it used to send me to sleep. I had a VAC one before the smith and nephew one
And yes it was a bit noisier. I am
Now
On table cloth sized dressings !

amberlight Sat 15-Jun-13 13:37:01

New thread! <adds flapjack to the trolley>

Marking place!

jchocchip Sat 15-Jun-13 13:53:42

Nice title gig and music ruby parsnip cake for the trolley smile
Survived parkrun. Going to pop out to show mil where the wool shop is in a mo.

Was feeling all proud as out of bed and had a shower, even washed my hair, now of course head in the bucket trying not to puke hmm damn chemo!

Parsnip cake sounds fun, enjoy the wool shop jchoc

malteserzz Sat 15-Jun-13 14:57:49

Boo to feeling pukey Ruby
Flapjacks sound lovely but parsnip cake I'm not sure about !

Ooh missed the flapjacks! Yum yum.

topsyturner Sat 15-Jun-13 16:21:04

<bobs in and marks place>
<bobs back out to kill 2 10 year old girls and buy wine>

Oh oh topsy, what have the girls done?

amberlight Sat 15-Jun-13 17:00:51

Ruby, you shouldn't be feeling that envy. Different potions needed?

Yes, Topsy, what's going on over there?

oh that capecitabine- it can do that-sometimes I've had no nausea and other times feel really quite queasy.
Poor ruby - (stroke Ruby's hair comfortingly)
Had a nice afternoon walking round lovely garden in Haslemere -very windy. Had the most delicious ginger cake and a cup of tea too.

Think it's from the infusion as capecitabine nausea tends to set in about a week later, it's not that bad, I don't feel queasy/nauseous as such more just a need to throw up hmmconfused very strange and irritating, no party for me tonight! Thanks for hair strokes and comforting words everyone smile

topsy what's happened?!

MAS sounds lovely, did you manage to avoid rain?

malteserzz Sat 15-Jun-13 17:25:29

Must be a cakey sort of day, dh has made cinnamon buns yum
Can I take my steri strips off my boob or do I have to let them fall off naturally? The ones under my arm all fell off a few days ago but these are just peeling and look a bit grubby, best to leave it covered as long as possible though ? Been 11 days since my op

poor love... yes,avoided rain too- and there were lovely sunny bits in between the clouds. It was dog heaven too as the owners have 2 lurchers.

I would just soak them a bit in the bath and if they are loose enough peel off but not if they need pulling.. saw those cinnamon buns on fb- they look fab...I now want one

malteserzz Sat 15-Jun-13 17:40:36

One side is almost off but the other is quite stuck on maybe id better leave them be
Buns were lovely!
Your walk sounds nice MAS we've had heavy rain and sun today
Shame about the party ruby but think of all the parties you will go to when this is all over smile
Topsy what have the girls done ??

Hm malt definitely sounds best to just leave them, I'm sure they'll peel off soon. I had some very stubborn steri strips, ick. Indeed, lots of parties to look forward to afterwards, and hopefully less awkward too as won't have to do the whole talking about chemo thing! Enjoy the cinnamon buns, they look fab.

MAS sounds fabulous and glad you got some sunshine. We had very heavy rain earlier and rabbit had to be towelled off but now glorious sunshine, it's so pretty with all the raindrops sparkling! But glad I wasn't out in it smile

I found a Christmas craft kit yesterday when sorting out papers so going to do that this evening grin

BetsyBoop Sat 15-Jun-13 18:31:52

<sticks head round door to mark spot for later>

<throws some strawberries and vanilla ice cream onto the trolley>

NedSchneebly Sat 15-Jun-13 18:45:35

<pops in, throwing market strawberries and DSs haribo on to the trolley>

Had lovely day with DBrother in London - trip to London transport museum, potter round covent garden, nice lunch, run for DS in the park. Pizza, beer and The Hobbit on the cards for this evening. Going to RAF museum at Hendon tomorrow smile

Sending big love and hugs to everyone, especially those not sleeping. It's so draining, I really sympathise.

Wishing everyone a peaceful evening and sleepful night x x x

kitkat1967 Sat 15-Jun-13 19:00:52

Hi everyone,

well I hit the wall today. Throughout diganosis and all the tests I have been fine - carried on working, no tears etc. but today after DS sports day I was wiped out - lay on the sofa and conked out for about 3 hrs - could speak to no-one (even the cat tried to wake me several times). I've been awake for about 2 hrs now but feel completely groggy.

Sounds like everyone else has been really busy though - I've got chocolate raisins for the trolley but no baking.

It's a long way off for me but can someone advise me whether you can have immediate reconstruction following mx if you still have to have your radiotherapy? And if you don't mind me asking what are the pumps from - why/when do you get them? blush

topsyturner Sat 15-Jun-13 19:18:56

Evening All

Girls were just being girls .
Talking non stop without breathing , nothing dramatic grin

Kitkat if you need rads they generally say no to immediate recon . Mainly because the rads can cause shrinkage around the scar area .
Are you worried about being without boob ? (Perfectly natural if you are)
I still have a falsie , because my cow of a surgeon won't do my recon till I lose my immense stomach .
But it's not that bad !

Ruby if you are feeling sick , please phone your onc team . Anti sickness meds can be juggled . There is no need for you to feel sick .

Aaaargh oven bell is going off , back later x

kitkat1967 Sat 15-Jun-13 19:27:00

topsy - not so worried about having no boob - more kind of hoping for a '1 hit' surgery and to get everything done. Am seeing surgeon on Tuesday for the first time since we got all the histologies in so will see what he says. It's a long way off anyway as got to do chemo first but as onc says it is likely he can't do much the chance of mx is now higher than it was - so was just curious. Def have to have rads - to start 1 month after surgery.
Sorry you can't have your recon yet - it is the risk of anesthetic? How much does he want you to lose?

smee Sat 15-Jun-13 19:55:38

Leapt, well ok crawled off sofa and return to find a new thread. Been reading back, so waving a hello to lily, though sorry you're here iykwim.

Sorry you're feeling sick ruby. Bloody chemo. hmm

Yay for your clear node Betsy that's great news. Hormone status sounds good too. 'Tis true I have had both breasts removed and on the NHS too, but one was at diagnosis, then I talked them into elective mx of non cancer breast a year later. Was quite a job to convince them. Can fill you in on what you need to push/ say it's something you're thinking of. You have to be v clear, driven and unemotional to convince them, which is why it's harder at diagnosis.

kitkat you can have implants immediately even if having rads. That's what I did. Rads can shrink the skin, but they do a temporary implant which they inflate (seriously weird!) once your skin's recovered. Does mean more ops, as they tend to then replace that with silicone down the line. Less of a big op than full reconstruction, but not as good a result as less natural. I just did it to have some shape as wasn't too fussed. Bizarrely now have pert if nipple less breasts of a teen and don't need a bra. grin

Bit late for cheering farewell to Sydney, but yay and yay again for HND. Astounding that it took that long to get rid..

Earth I do that jumpy thing a lot. Always have had. I thought it was normal. Is it not? or are we both just weird? confused

Tis is getting a bit epic and still have missed loads I know, but you lot can't half yatter on. Have some blackberry jelly and raspberry ripple ice cream for post op sore throat, which I might share if you ask nicely. I have been promised wine but DH is proving a bit slow with the opener..

kitkat1967 Sat 15-Jun-13 20:33:05

thanks for the info SMEE. I'll report back post seeing surgeon - see what he has to say. I would have more options if i had bigger boobs it seems hmm

trice Sat 15-Jun-13 20:49:53

I have been for three walks today. Trying to build up some stamina. Perhaps it will help me sleep better.

I do the jumping thing too. Must be one of the many drugs.

Copthallresident Sat 15-Jun-13 20:53:02

kitkat I can only dash on but a few friends had immediate recon and then radio, with no probs including one who had chemo pre mastectomy . However I do have a friend whose lumpectomy breast turned into a cannonball, ten years ago so may technology may have overcome it. I think you have to be guided by your Consultant.

BetsyBoop Sat 15-Jun-13 21:08:34

glad to hear you're on the mend smee - when you are feeling fully recoverd from your op I'll pick your brains, as a double mx an option I'd like to explore. With having chemo first it is a while until surgery so it might be possible to convince them I'm sane and rational before hand although DH would no double disagree with that one and do it all in one go.

I hope the sickness is passing Ruby - yuck sad

Glad you finally got your "divorce" HND smile

trice how are you doing?

kitkat I have the opposite problem (humungous boobies - J cup shock) - I would offer you some of mine but, well, as you know they aren't much cop now. grin I had a conking out session on the sofa last Wednesday after tea, for over two hours . Even the kids bouncing round me made no difference apparently, it does just suddenly hit us sometimes I guess.

Ooh cinnamon buns malt - I might need to ask for the recipe for those, I love cinnamon smile

Well I've been busy the last couple of days setting up a blog and a "secret" facebook group where I can post updates for friends and family. It's lovely everyone cares so much, but I was getting worn down with repeating the same update over and over...so hopefully this will help.

BetsyBoop Sat 15-Jun-13 21:10:07

good to see you trice smile we crossed posts, I took that long writing my mammoth post grin

malteserzz Sat 15-Jun-13 22:55:01

Night all x
Hope everyone's had as nice an evening as possible. We've watched sky fall on DVD really enjoyed it. No wine tonight had too much last night!
Hugs for those who need them and sleepy vibes smile

malteserzz Sun 16-Jun-13 07:38:21

No overnight posts this is good grin
Fathers day today don't forget
We're off to cadburys world as part of ds birthday celebrations, he ll be 10 next week, I'll bring plenty of chocolate back for the trolley
Hope everyone has a good day

NedSchneebly Sun 16-Jun-13 08:42:42

Just checking in on the nights events -malt is right, no night posts a positive thing? Hope everyone had a good one x x

Enjoy Cadbury world malt I've been several times and loved it. Must aim to take DS sometime - think it might be right up his street!!

Have a peaceful Sunday everyone, whatever it holds x x x

sandripples Sun 16-Jun-13 08:52:16

Hi, just saying hello really as I haven't been on for a while. (Welcome to new people. Just to explain, I was Dx in Dec 2009 and had lumpectomy, Chemo and rads in 2010 but now fine as far as I can tell and working full time so not often on here but I like to keep in touch now and again)

Betsy - one thing that helped me re communication of the same thing repeatedly was to choose a couple of trusted friends/colleagues and just update them - they accepted the role of letting other specific groups of friends or colleagues know what was happening with me. It saved the repetition. Early on I also found it helpful to realise I was under no obligation to tell anyone anything - it was up to me. This was partly because my dx was just before Christmas - I decided not to let many know till later as I didn't want to tell people in Xmas cards or before I had discussed it with the family which needed time.

Someone mentioned parsnip cake. I tried a National Trust recipe once for that - very yum!

My weight has got really out of control over the past few months. Disappointing after my efforts in 2011 when I was positively sylph-like! (well, comparatively speaking) I think its partly the weather - have lost the motivation.

Anyway, I had a lovely w/e of sailing and gardening last w/e, and this w/e is quieter but am going for a swim soon then still need to plant a few more beans, re-pot aubergines and cut the grass.

Wishing you all well, especially Gigs after your recent lego-operations, Smee after op, and all those waiting for results or having treatment.

i'm up sad (2:52 my time)

achey and heartburn and paranoid about my tingling hands and feet. then again i read something about 30% of people given a placebo but told it was chemo had their hair fall out so also paranoid about bringing it on. Mental dancing away! Hopefully some meditation cds help

topsyturner Sun 16-Jun-13 09:41:55

Morning All

CADBURY WORLD ?????
<faints clean away>
grin

Sparkle the 3am wobbles are the worst aren't they ?
<saves a special place at the front of the Cadbury World queue for Sparkle>

Brief post this morning .
Off out for family meal at posh hotel shortly (fil pays for us all 2/3 times a year) to celebrate Father's Day .

Have to get showered , drug my hair into submission , and try and fin something clean and hole free pretty to wear .

We have to leave at 11.15 !
Aaaaaaaaaaaaaaaargh .......
grin shock confused grin

Oh how exciting - Cadbury World and topsy's lunch out ! I bought dh and T a lovely Chinese take away last night and there's a wee something for him today...have got beer and chocs for my own dad
Am cleaning and doing a bit of work today,then meditation again this evening.

Thanks for the spot Topsy, chocolate sounds great.

I just figured out the fear is about fading away into nothingness. I've already lost so much, and will be loosing more, including parts my body beyond the already dead and gone hair. I would like to be able to fully inhabit the parts I have left. I'm bitter it just doesn't end.

FECing cancer. smile

trice Sun 16-Jun-13 11:24:56

I had some lovely black pudding with my fry up this morning.

The kids have taken Dh out for fathers day. I am starting a new book.

Cancer still sucks.

Copthallresident Sun 16-Jun-13 12:36:16

Sparkle You have had so many assaults on your self esteem, a relationship breakdown as well as bloody Cancer, plus a move home, but you do know that losing your hair and a pound or two of superfluous flesh that's gone rogue (as far as I'm concerned my boobs were done with once they had fed my children) is irrelevant to the real you? and you wouldn't have chosen that name if you didn't know deep down you sparkle wink. I honestly realised once hair and boob had gone and I looked in the mirror that it was still me there looking back, that in the end it really didn't matter or make a difference to the me inside, and it will be the same for you.

Trice Yes it does. Love Black Pudding, we have a Laverstock Farm Shop down the road and their's is heaven.

Just back from our green festival where I was humiliated by my dog, it must be the time of the month but he was being very grumpy with other dogs but a complete tart with the humans especially the scantily clad Rio carnival girls laid on by the local travel agent who he refused point blank to leave, much to everyone's amusement.................. he's 9 so I suppose being a grumpy dirty old man is to be expected sad

Off for tea with the inlaws, will need duct tape on mouth to prevent another bout of Thatcher tourettes, they practically have a shrine to her hmm

I'll just think of Cadburys World, and a tower of that chocolate with jellies and candy grin

HerNextDoorAt21 Sun 16-Jun-13 13:23:08

Hi folks. Another day another soft play ! DH is working yet again (he works in medical assessment ward in the hospital topsy and i were imprisoned in)and we had to do Father's Day last night when he got home from work about 9.15pm .... DS(4) was struggling to stay awake !

kitkat I had yo have a vacuum pump to take away dead tissue that started breaking down after my LD flap surgery after mx. I have had unusually long winded and troublesome problems since my surgery .... Just call me lucky !!!! I would still do it All Over again though even with hindsight !!!

jchocchip Sun 16-Jun-13 13:48:52

Gatecrashed a party yesterday evening grin made some buns <puts on trolley>

Hello all,

I hope you're having a good day. I'm feeling better ish today after an okay night but forgot to take capecitabine this morning I think shock oops.

trice what's the book? Any good? Cancer definitely still sucks smile

sparkle sad I feel similar. Like I'm completely lost really and don't know who I am, I'm just trying to get through the chemo and hopefully will feel more human after that, hopefully you will too smile it's all just so grim and soul-destroying isn't it.

malteserzz Sun 16-Jun-13 17:55:29

Hugs to everyone who's feeling down its not surprising with this crappy illness hmm
I've had a lovely day at cadburys world, they give you a pot of melted chocolate and you choose what to put in it, so I had biscuit pieces, ds had marshmallows and dd and dh had white chocolate buttons. Then further round you get more melted chocolate- we may have kept walking past that part grin
Lots of free bars and bought more from the shop so I'll throw chocolate on the trolley

Gigondas Sun 16-Jun-13 18:05:45

Waves to all (while counting how much cash she has in case needs to bail Copt if she smashes the shrine).

Sympathy to those feeling rubbish , esp sparkle, trice and ruby, but sometimes it's hard to remember the real you, not the patient . I have felt most sorry for myself as felt sick today and really sore (back ache as sit so awkwardly). But feeling bit better after painkiller. I must say thinking this is only going to get worse and what is point as so useless (my ineffective left arm and lugging a pump getting to me- how you stuck it for 3 months hnd has me admiring you).

Topsy- hope you enjoyed fancy lunch.

Copt- your dog story made me laugh. Is rihanna deafening? Could just about hear it last night.

Hnd- how was soft play?

Back later as mini gig here and wants phone.

topsyturner Sun 16-Jun-13 18:34:06

I'm baaaaaaaack !

Lunch was indeed good .
Good food .
Lots of wine .
Great company .

Knackered now !

The White Queen starts tonight . I love an historical drama I do grin

Hope everybody has had a good day
And yes , Cancer does indeed suck !

topsyturner Sun 16-Jun-13 18:34:55

<adds coppers from bottom of purse to Copts bail fund>

malteserzz Sun 16-Jun-13 19:35:04

Topsy what did you have for lunch?
White queen does look good I will record it as it clashes with big brother !

topsyturner Sun 16-Jun-13 20:24:45

I had , what I believe is most commonly referred to as "everything" for my lunch ..... grin
<damn you hotel buffet>

malteserzz Sun 16-Jun-13 20:37:40

Got to love a buffet !
Little bit of everything

jchocchip Sun 16-Jun-13 21:02:42

Lazy afternoon here. Managed to pot up a few plants smile and break a window in the greenhouse sad white Queen starting now...

how did you do that jchoc ??
Went to meditation - my legs went numb perched on my meditation bench,usually it's really comfy- so I spent the half hour trying to not think about how much they hurt ! gah !

malteserzz Sun 16-Jun-13 22:18:29

How was white queen Jchoc ?
Mas that's annoying hope you feel at least a bit relaxed after it though ?

Hope everyone sleeps well tonight, what appointments have you all got this week ? X

kitkat1967 Sun 16-Jun-13 22:21:24

Hi Malt - I have a long list of appts next week (as you already know) but have added in having my hair cut short tomorrow - not sure how I feel about that.

You're getting your results aren't you? Will you get them from your surgeon or oncologist?

jchocchip Sun 16-Jun-13 22:21:55

Opened window to let out bee and forced window shut oops. Have duct taped it for the moment.
Pain about bench grr.
Just had to call cat in, getting dark. Usually he comes in early evening but was playing out today...
Went past cadbury world last week but it was 6pm so it was shut. I've only ever got as far as the shop. Nighty night everyone.

topsyturner Sun 16-Jun-13 22:32:09

Have recorded White Queen , shall watch it tomorrow when DH and DD are out of the house .

Got DS home tomorrow . His school is closed as Obama is coming to town to visit . And a lot of the roads into town are bring closed off , and public transport is being cancelled .
Don't think the CIA trust is folks from Belfast very much ... grin

Wow 37th went quickly. Sorry haven't been around much - work is definitely coming between me and mumsnet.

Good luck this week malt and kitkat. Welcome to all the new folk. Sorry you are here.

smee how are you feeling? Resting up I hope.

gigs hope your pain eases soon. Does radiotherapy start for you soon?

Waves to everyone. Nothing much new here. DDs dancing show last night which was fab. GCSEs still ongoing here - only 4 more to go.

Missing catching up.

malteserzz Sun 16-Jun-13 22:56:08

Good luck with the hair Kitkat how short does it have to be for the cold cap ? Yes my results are from my surgeon on thursday I think I get an oncologist after that but I'm sticking my head in the sand about that so far
Hi Gracie glad you're ok and busy smile
Night again x

kitkat1967 Sun 16-Jun-13 23:02:41

Malt - it doesn't have to be short but may be more successful if it is so I thought I'd have the chop - also if it does fall out it will not be such a shock I guess. It's not long now - just reaches shoulders but with long layers.

Good luck on Thursday - are you waiting on Lymph node results? And anything else?

KurriKurri Sun 16-Jun-13 23:04:31

Just popping in to mark place and say goodnight to all, hope everyone had a good restful weekend, loads of good vibes for everyone with appointments, tests, treatment and any other challenges next week xx

In other news - I went to a fete yesterday, and won a large fancy doll in a 'guess the name of the doll' competition grin - what on earth am I going to do with it? (Its one of those china type ones I think - so not really suitable to give to any of the children I know) - I may have to re raffle it!

Sorry, that wasn't a very jolly post for Father's Day.

I don't care about the hair (much) and can live with one boob, just loosing hands and feet as well felt one step to far.

I'll get over it and I'll even be sparkly again if it does happen I'm just having a bit of a mope for now. Sunnier internal weather due tomorrow for sure.

MAS - I had the same uncomfortable meditation today.

(Feeling of hands and feet, no plans to loose the whole parts at this point grin)

Gigondas Mon 17-Jun-13 07:04:20

Sparkle- it's ok to feel shit. Best really not to pretend it isn't but go with horrid feelings and you will get your sparkle back at some point.

Kitkat- short haircut is good idea. I found I actually really liked my hair short so was a nice surprise. Also if cold cap doesn't work, it is less of a shock when doesn't fall out.

quite why Obama is so thoughtless as to disrupt your crochet and tv viewing is most thoughtless topsy.

Mas- would a cushion help you next week? Must have been distracting.

Kurri- do they even make those dos now? You could Ebay it.

Gracie- hugs , good to hear from you.

Malt- are you all chocolated out?

Waves to everyone else- dressing change today then radio starts on Thursday. Am feeling very sore , weak and fed up so not looking forward to this.

malteserzz Mon 17-Jun-13 07:04:43

Oh gosh sparkle I was just going to say I didn't realise I would lose my hands and feet !

I'm waiting for node results on Thursday plus the pathology from the lump, I have the biopsy results from it but this will tell me exactly the grade etc and if they got clear margins

Meant to say the other day I was quite surprised people were telling ruby she shouldn't have to feel sick during chemo I thought that was normal, I'm expecting it to feel like a very bad hangover ?
Think I would re raffle the doll too Kurri ! Shame you didn't win wine or something useful !
Topsy hope the Obama visit goes ok, imagine the security for that

malteserzz Mon 17-Jun-13 07:06:33

Morning gigs yes all chocolates out and had a great day, good luck this week

Gigondas Mon 17-Jun-13 07:22:45

It might be a normal side effect malt but you don't have to suffer as there are many drugs to control it so ask if you feel sick as sometimes you need to change/add to drugs to get right mix.

kitkat1967 Mon 17-Jun-13 07:29:04

Hi Malt - my onc says i shouldn't be sick with the chemo -maybe a couple of days of nausea. He says he 'has something' for any symptom and any problems in the first cycle he can fix for the next time. I guess it also depends what chemo you get but i will report back after Thursday grin.

If your nodes and margins are clear does that mean you are done with surgery then?

Was alarmed at the idea of losing hands and feet grin ! My legs certainly felt as if they'd never move again after perching on my bench..might sit next time and put feet on bench,which is comfy.
Hope everyone has a good week- rads/results/treatment -wise. I am off to support group on Wednesday,then bloods on Thurs,onc on Fri.
T's last 3 exams this week.

malteserzz Mon 17-Jun-13 08:22:27

Yes if nodes and margins are clear I won't need more surgery, not holding out much hope though as last time I was in with 2 women in for 2nd time so seems to be quite common.
Op and recovery weren't as bad as I feared at all though so must remember that

kitkat1967 Mon 17-Jun-13 08:27:23

Malt - my mum had to have her margins re-done and it does seem quite common - she was cross about it though!! But it might not be you smile

malteserzz Mon 17-Jun-13 08:54:36

Morning mas, gigs and everyone else
Kitkat thanks I'll just have to wait and see. Good luck with the hair you should show us a photo !

Copthallresident Mon 17-Jun-13 09:14:18

Morning! Enjoying my nice prison breakfast......

not really as subject of Thatcher didn't come up because DH and MIL in a control freak off with DH outlining his retirement plans to come down and "help them" by sorting out their cupboards hmm and MIL plumbing the depths of her passive aggressive arsenal which meant that she barely said a word and had her mouth set to tightest cat's bottom the whole afternoon. Of course last thing that got discussed was what they would like us to do that would actually help.......sad

gigs hope you get a gentle nurse and sending healing vibes for soreness.

malt side effects vary from person to person. I never had anti sickness meds as I never threw up but just would not be able to face food for a few days. It was like a hangover, just felt generally a bit shit, and towards the end of the six months weak and faint. However amber is evidence some people sail through it. I'm not sure it is helpful to paint it all as going to be rosy though, I know my hospital handed you a ridiculous pink leaflet produced by the drug companies with lots of happy looking people with that romantic foggy photographic effect selling chemo almost as a positive lifestyle choice, like cosmetic surgery, it just added insult to injury when I turned a strange yellow green colour, my hair fell out, my insides got so clogged up that I had the worst piles since I pushed out a 10.5 lb baby, and I perfected the art of the public swoon etc. but it still wasn't as bad as I thought it was going to be grin

MAS yoga was my way of trying to achieve calm and relaxation, trouble was I went with friends and we all had real problems at the bit where you put your legs over your head, forget what the position is called, but we all suffered from terrible vaginal burps........trying staying calm and relaxed when you are all making squishy noises as the air escapes.......

KK MIL gave the girls those dolls, I think we may have given them to charity for a raffle grin

Today DH and I have to go and discuss pensions, more control freakery as DH is mean and a hoarder of money whereas I want to enjoy what we worked for, who knows what lies around the corner? So bored and frustrated at just the thought of it, and predict arseyness.....

Copthallresident Mon 17-Jun-13 09:18:23

malt I was only one out of my friends who didn't have clear margins, It isn't that common.

smee Mon 17-Jun-13 10:14:36

Morning all. Trying to squash in a bit of work, but off to see BCN to change dressing in a bit and hopefully remove my lovely drain later. Oh-how-we-love-them. hmm

Malt I doubt anyone will tell you chemo's easy, but we'll all probably agree it's doable. I think Copt's right as it's good to be honest rather than happy clappy about it all. I assumed I'd be in bed each time, but I never was - I kept working throughout and never missed a school run. Easy for me as I work at home, but still shows that mostly for me life went on as normal. Having said that I was horribly sick on FEC, but then I am on most things, so morning sickness hit me v.hard, as do general anaesthetics, but then I then sailed through the 3 x Taximeter, whereas lots of people find that hits them harder. It's all so individual. Key thing is there is lots they can do to help with any side effects and honestly for most people it isn't anywhere near as bad as you think. I even went camping on Hadrian's Wall. pure madness grin

Where's summer gone?! Brrrr....

love the idea of MIL's cats bum face grin Eek @ yoga noises though..we used to do mindful yoga as part of the 8 week course which was v good- I should keep that up really.
Am re reading the Ruth Picardie book again - was interested in the progression of her disease.I realise her secondaries were caught much later than mine of course.

smee hope your drain gets removed ! x

smee Mon 17-Jun-13 11:02:16

Not too sure what the 'Taximeter' is in my last post. Meant 'Taxotere' grin

MAS, that Ruth Picardie book must be quite a tough read. Her secondaries were caught v.late though and the cancer was clearly extraordinarily aggressive. x

Gigondas Mon 17-Jun-13 11:07:21

Waves at smee and hoping drains out.

Agree with Copt that chemo not the best experience but it is doable- the key thing is to make sure you speak up about side effects and get some help as hard though it can be, the way can be eased.

Looks sternly at mas-agree with smee about that book being a tough read. She isn't you mas, it was some years ago so am sure that dx was as sophisticated as it is now , her drs were negligent (the one who missed it was struck off and I believe her ami,y gr damages) and as smee said was very aggressive. Personally I think cancer books, blogs etc are one massive head fuck so I avoid the temptation to read them.

Copthallresident Mon 17-Jun-13 11:24:42

Should be going out <avoidance> but Ruth Picardie an extreme case, found lump, told by Dr who didn't comprehend results that said it was malignant that it was benign, had twins by IVF which would have greatly increased her hormonal load, so that by the time she found out lump was malignant it was huge and very nasty indeed. Her husband received compensation on the basis that she would in all probability, have gone on to live years, I think it was twenty, if first doctor had read results right.

topsyturner Mon 17-Jun-13 12:05:43

I'm like Gigs , I can't , and don't want to , read any books/articles/blogs on cancer .
I can cope with this board as we are all friends .
But I really don't need to hear other people's stories .
<buries head firmly in sand with fingers in ears and singing lalalalala>

Well Barack and Michelle haven't called in for morning tea , so I might as well get dressed now and start thing about lunch instead .

Pasta and pesto and salad anyone ?

smee Mon 17-Jun-13 12:10:58

shock at Barack and Michelle not dropping in, Topsy. Were you in PJ's? That's making an effort. grin

Gigondas Mon 17-Jun-13 12:14:50

Barack and Michelle are fools. Looks wistfully at topsys lunch as about to get dressing changed .

Hi everyone. It's been an awful morning so far so I'm having a rant. So there, (spits out dummy)

Got my first appointment at chemo to discuss plan, have bloods done etc.
Appointment is for 1.30pm.
Passenger transport arrives at 9am.
Dh blows a gasgitt

He patiently (at first) explains that I wouldn't be in any fit state if I have to sit in wheelchair for that long and my back is very painful at the moment.

They explain they have two pick up times. First around 9am, second at 2pm and those times are it.

I am then told the ambulance will now come back tomorrow around 2pm and thats when treatment will begin. No bloods or tests or treatment plans.

I am sooooo very tired of it all.

Rant done
Sorry
xxx

grrr earth that sounds crazy.
I think,re the Ruth Picardie book, that part of me is still in denial about secondaries,so I read it in a fairly detached way. I also told the meditation group (we were all asked before meditating what spirituality meant to us - I cringe at having to speak out ) that I feel that there is something beyond death , not sure what,that means I am not afraid of dying...not sure how true that is when it comes to it - but again,a sort of detachment. I was also secretly fretting about having to take my shoes off as requested by the man whose flat we are in -not because i mind that,but because his carpet is quite scabby and not v clean. A v nice lady read a piece about generosity which was good - about attachment to things and acquiring more things .

trice Mon 17-Jun-13 14:19:05

I am not scared of dying. I am bloody pissed off about it though. I was really looking forward to the rest of my life. It's not fair.

I am feeling pretty good today though. I have been out for a walk and a cup of tea and got a load of paperwork sorted out.

Sorry to hear about the transport Emin, what a pain. I am sure it is not making things easier for you.

Gigondas Mon 17-Jun-13 14:26:34

That's how I feel trice. Also pissed off about amount of feckless twats I can think of who don't offer much and it's people like us trice who have to put up with this.

Emin- double angryangry about transport and piss poor communication.

On way back from dressing change- was bit sore but done now .

Thank you, I'm calming down, slowly it must be said, but It's just another cross to bear I guess (whooo got religion in, spooky)

So I'm deciding on who to google or ask (hint hint) about what will happen tomorrow, that's when they've now decided I will begin chemo.
Does it hurt, make you nauseous, straight away? Or might I feel no difference.

Has anyone been through this before, ie, no knowledge before hand

Sometimesiwonder Mon 17-Jun-13 15:00:08

Hi Earth

Well I was in denial so I was pretty information-free (though admittedly from choice).

I took FEC, which I guess you aren't, but I was pretty nervous and expecting the worst. It was actually OK. Crap, but OK. Bit of nausea, monumental tiredness and a slight headache.

Good luck x

Sometimesiwonder Mon 17-Jun-13 15:02:20

As regards what will happen - be prepared to be there a while, it's usually a reasonable room with armchairs and seats for friends. It is peaceful and calm. Everything takes ages, but you usually get tea and sandwiches, which is a comfort. Then you get given a shedload of meds to bring home, and sent away until next time. Take something to do to pass the time or you'll get stressed and fed up.

trice Mon 17-Jun-13 15:11:19

Get them to write down the meds you need at home Emin. My brain doesn't work when I am stressed out and I don't remember anything. You will be fine - it is honestly not as bad as it looks on TV. You will feel a bit off maybe but not dreadful.

Gigondas Mon 17-Jun-13 15:17:09

Think everyone's experience differs but shouldn't hurt anymore than any other infusion (ie you get a jab when put line in). Sometimes you can get an odd taste in your mouth so take some drinks/snacks (kurri had the snack and entertainment bag down to an art I think).

Do get them to go over your drugs and make sure you get them all(my hospital usually forgot one or other of them in my goody bag).

Gigondas Mon 17-Jun-13 15:18:04

And don't google!! If you must look at Macmillan or breast cancer care fur Info.

malteserzz Mon 17-Jun-13 15:32:41

I'm a bit like topsy I think
I thought about googling ruth picardie to see who you were all talking about but I'm too scared to!
Feel bit better now I've been staying away from the bcc and Macmillan site too
Emin I hope everything goes well for you tomorrow x
I've been shopping, treated myself to some nice perfume smile feel a bit skanky as I can only use deodorant on one side !
Walking with ds cub pack across the fields to the chip shop tonight grin
Love to all
X

kitkat1967 Mon 17-Jun-13 16:07:40

Malt - I'm on deodorant on one side only and also feel a bit skanky - shower every morning so I'm sure I'm not but it's what you're used to I guess.
I did google Ruth Picardie but retreated fairly swiftly - having convinced myself that my situation is completely different.

Had my Echo this morning - seems my heart is in perfect nic smile

Hair is cut - maybe not as short as it could be but a lot was chopped off and it's full of various different shades!!

Good luck tomorrow Earth - I am starting on Thursday but have had lots of info (from here and hospital). Bloods etc already done but they have asked me to pop in tomorrow after picc line inseration so I'll get another chance to ask questions. Of course by then you will be one treatment down!

smee Mon 17-Jun-13 16:25:04

angry Earth on transport. How ridiculous. On chemo, it's bound to be better than you're expecting. I had a massive anxiety headache on first one as was so stressed, but in the end it was mostly boring and took an age. Any side effects don't tend to hit until later on, so don't worry too much about them for now. Will be thinking of you tomorrow. x

MAS, I can see how you feel a bit detached and I'm all for confronting and thinking through and around fears, but then I'd bet that's right some days and not at all on others, so you take care amidst it all. That carpet sounds horrid. Am sure I'd have run.. blush

Malt chips sound good. You've made me want some now. smile

Drain gone. Yay! I cycled to the hospital. Very life affirming, but feeling a bit like I overdid it now.. hmm

smee Mon 17-Jun-13 16:25:51

x-posted with you Kitkat. Yay on perfect heart. smile smile

malteserzz Mon 17-Jun-13 16:32:05

Kitkat I hate only being able to do one side I've told dh and dd to tell me honestly if I smell ! Like you shower every morning so sure I don't but just don't feel as clean, hate having to use a roll on too and no wet shaving! Gosh what a trivial moan sorry !

Smee good for you for cycling! I only get on a bike when we go to center parcs on holiday smile

smee Mon 17-Jun-13 16:43:00

Malt, we're cycling nuts in this house. DH has 4 bikes..

That not being able to use deodorant is horrid. How long before you both can? Have they said?

jchocchip Mon 17-Jun-13 16:43:25

Earth grr about transport.
I did google the ruth picadie book, I couldn't risk reading it at the mo. I read the street cat bob book last week and found it very emotional! <emo wuss emoticon> fell asleep on bus this morning and woke up in interchange blush

HerNextDoorAt21 Mon 17-Jun-13 16:52:31

Wow this is moving so quickly !

earth that transport issue is indeed crazy ..... how anyone is expected to sit around for that long is really mad !

topsy I am missing my daily coffee and Helicopter Rescue viewing ... I am off tomorrow so can I come round after school run !

gigs Did you get a bot of a nurse ratchett this morning ? I actually complained to mine and told her I had had to get painkillerws prescribed after she hurt me so badly, She was a lot more gentle after that but could not help but experiment with the dressings and use alternatives for no good reason ...... she does my head in ! I always hope for nice nurse .... I am still on pretty heavy duty dressings and am back tomorrow for a check up.

As for looking at the cancer web sites, I had more or less convinced myself I never had cancer, just surgery to get rid of my body parts and rebuild them ..... only every now and again do i get a panic attack that my body is obviously able to produce cancer cells ! I am so scared of leaving my children sad

HerNextDoorAt21 Mon 17-Jun-13 16:54:38

Also gigs softplay was fine on Saturday thanks followed by yesterdays activities of ten pin bowling, followed by more softplay then a trip to a lovely park with a miniature railway and bike trails (I had the boys' bikes in the car, maybe I need one too !) then a trip to my friends for coffee and biscuits - she has just lost her mum sad

I used roll on deo pretty soon after my SNB (yikes- probably wasn't meant to)
ruby I have a big tub of the Neutrogena comfort balm - am looking forward to soft and lovely hands and feet.
smee thanks - I just feel a bit freakish in my reactions to dx. Today I made a playlist of funeral music so am in a bit of a weird state.
The first week at meditation I had flipflops and bare feet and ignored the request to leave shoes downstairs by door -= I think I'd have flipped wioth anxiety about letting my feet touch the carpet.

malteserzz Mon 17-Jun-13 17:33:59

Hnd think the fear of leaving the children is the worst thing, though sometimes I worry more about dh as they will grow up and move away and he will be on his own hmm

Don't know how long we can't use deodorant for, I suppose till wound heals?

malteserzz Mon 17-Jun-13 17:41:36

Mas funeral music hmm are you ok if that's not a silly question ?
Wondering how lily maid is too, didn't see her post over the weekend

Gigondas Mon 17-Jun-13 18:04:17

Planning for funeral- I have done mine. I used to cry about it but now have rationalised it with all other stuff you do like making a will as we all die. I just hope it's not too soon.

Malt that is my worry too. Being brutal in natural order, kids lose their parents. It's not right but I can prepare support for them, make sure they have money etc - none of Eric replaces me but does try to soften blow. Dh is older than me- he never thought I would go first.

Gigondas Mon 17-Jun-13 18:06:30

Copt has given me lots of comfort about her stories of friends kids.

Plus we all live on in those who know us so that includes you- my lunacy I will still live on in some way (and vice versa ) while you lot remember me.

Gigondas Mon 17-Jun-13 18:07:28

SOrry that was a bit sad - what's everyone having for dinner? And has anyone seen the film Lincoln?

risotto tonight...

malteserzz Mon 17-Jun-13 18:17:51

Chips with the cubs smile

malteserzz Mon 17-Jun-13 18:18:45

And no I haven't seen Lincoln sorry

Gigondas Mon 17-Jun-13 18:23:36

Proper chips? envyenvyenvy

jchocchip Mon 17-Jun-13 18:38:52

Sausage and mash smile

NedSchneebly Mon 17-Jun-13 18:41:35

Dinner in the Ned household is some slow roasted meat that DH has just put on the oven. Possibly beef. Smells yummy anyway smile

Haven't seen Lincoln either - is it any good? Let us know gig, if that's on the viewing menu for tonight !!

BetsyBoop Mon 17-Jun-13 18:48:25

Smee - glad the drains are gone.

earth - grrr on your behalf re transport

I was wondering about how lily is too malt

hugs for everyone who is feeling down today

I can't do more morbid talk today. Without saying too much (as it could definitely out me) I arrived at work today to find out a colleague had passed away quite suddenly over the weekend sad Of course lots of upset staff and children and lots of talk of death and dying just what I need at the moment, like a hole in the head to be fair they did say I could stay out of the session where we told the children and answered all their questions, but then there would be the "why is Mrs X not here?" questions to deal with instead. Just all a bit too close to home at the moment. Lots of tears all round today.... Aargh life is so unfair sometimes, why take such a lovely, sweet, kind and much loved lady before her time, why?

At least my hospital are on the ball, I now have an oncology appointment for tomorrow afternoon, bone scan on Thursday and heart scan for Tuesday next week (still waiting on chest and liver scans) So hopefully I'll find out tomorrow when things will be kicking off. I also got a pack of info through the post from my BCN, including booklets on FEC and Docextaxel - so I would kinda guess that's the chemo regimen I'll be on grin I have a longstanding hairdressers appointment for this Saturday, so I'll be getting a shorter cut in anticipation and will be saying see you in a year or so, once I've got something worth cutting again grin

Copthallresident Mon 17-Jun-13 19:03:21

I'n on the 33 bus on the way home so discussing dinnerseems more appropriate than death except that of course if there is anything more unfair than cancer its being hit by a bus so I will keep an eye out. No ifea why the worst alternative toa terminal illness is always being hit by a bus as if planes don' t plummet out of the sky , or even stowaways in sheen where I am now ,or all manner of stupidly random ways to go.....

Anyway picked up lovdly sashimi whilst in town for dinner....

HerNextDoorAt21 Mon 17-Jun-13 19:14:55

We had pork chops and mash and carrot and parsnip mash with lovely homemade gravy !

Have to and get special packed lunch supplies for my DS(9) for his school trip tomorrow ..... They are going canoeing, doing shelter building and archery !

jchocchip Mon 17-Jun-13 19:50:16

Its a bugger. Been thinking about friends who have gone. Photo albums of memories to look through at the wake have been a nice touch. You don't get to prepare if you go with a bus, easier for you but harder for loved ones so be careful out there, Copt!

amberlight Mon 17-Jun-13 19:55:13

Deodorant; I used it all the way through but swapped to Bionsen which has no aluminium in it and is natural minerals. Er, don't use it on open wounds. Others prefer not to bother, but I had no problems with it and the radiotherapy or surgery or anything else.

Clear margins - 1 in 4 chance of having a second operation.

Hospital transport that only turns up at 9 and 2?? Ruddy ridiculous!

Back in Parliament tomorrow for some autism personalisation thingy. Wonder if I'll get mistaken for a Baroness again, or chased round the halls by security guards assuming I'm a terrorist. It's bound to be one or other. My life is never dull enough. grin

malteserzz Mon 17-Jun-13 20:58:01

Walked a couple of miles with the cubs and had a cone of chips as a nice reward

Betsy I'm so sorry to hear about your colleague what an awful shock, hugs

makingdoo Mon 17-Jun-13 21:03:26

Hi All
I've tried to come on this thread a few times as it was recommended by someone in chat. You are all amazing ladies and I wish you all well.

I'm on here because my lovely SIL has recently been diagnosed with aggressive Breast Cancer. I want to try and understand as much as I can and try and be as much support as possible.

She's 38, diagnosed 6 weeks ago. Has had a mastectomy and began chemo last week which will be followed by radiotherapy. She is understandably very down and mentally not in a good place. We are taking turns to be with her in the day as she doesn't want to be alone.

I just want to help but don't have any words if comfort for her.

Do you mind if I hang around here?

Lilymaid Mon 17-Jun-13 21:06:35

Hi - putting my mark on the new thread.
Weekend spending spree consisted of confirming finance details about a new car I'm buying, then heading off into town to buy an iPhone5!
DH arrived home on Sunday morning, so I told him the news and we went on a walk in the afternoon. He takes things in fairly slowly (being a man) but has cancelled his business 400 miles away on Friday so he can come to the hospital with me.
Back to work today - haven't said anything to anyone there apart from the boss. Getting on with sorting stuff out ... in case I might be away some time and some poor temp has to work out what on earth I've been doing!

Gigondas Mon 17-Jun-13 21:10:13

Hugs for betsy -that's awful.

Amber- I hope tomorrow goes smoothly but your trips are never plain sailing.

Of course you can hang around. It takes a while to process the shock of diagnosis so no wonder your poor sil is down. You and your family sound lovely. Have you spoken to Macmillan at all as they also have support and advice for families?

Mm chips malt. In bed with my kindle (and hoping smee is resting up). Could be drugs but feel less aches. I know exactly what hnd means about horrid nurses after last week.

Gigondas Mon 17-Jun-13 21:11:44

Cross posts for lily- good you have told dh and he can support yip. iPhones also good for distraction when waiting .

Copthallresident Mon 17-Jun-13 21:17:49

Survived the 33, and being under the Heathrow flight path, so live to play another day!!

NedSchneebly Mon 17-Jun-13 21:18:36

Turned out to be pork. In Chinese sauce with noodles and
Pak choi. Yummy!

makingdoo what a shock for your SIL and your family. Yes, of course you are most welcome here, and your SIL too, if she feels she wants to. We can answer any questions you or she have - chances are, we've seen it all or been through it all, between us. You sound lovely, wanting to help and support her. Hang out here and ask anything however daft it sounds.

lily I love my iPhone 5 - it is fab!

betsy so sorry to hear about your colleague. Be gentle to yourself and give yourself time to come to terms with it all. It's doubly hard on top of everything else. Thinking of you x x

Hope everyone is having a nice evening - we're watching the white queen. Bit worthy and historical for my liking, although Max irons is quite easy on the eye. . .

Copthallresident Mon 17-Jun-13 21:24:53

Welcome making do I am sorry your SIL is facing this diagnosis and treatment. There is no formula for how you react or should react to the dx and treatment of Cancer. Being very down is entirely understandable and normal. And I am sure just having your support and your ear is a comfort.

trice Mon 17-Jun-13 22:02:21

I was watching daytime TV today (something I usually avoid as it is just wall to wall timeteam digging up different shades of mud and getting excited over it) . There was a breast cancer charity advert on going on about self examination and how a thousand women die every week who could be saved if they had only checked their breasts. I thought self examination had been proved to be unhelpful by proper science and that they had stopped recommending it? Anyway it did my head in. I thought I was safe with Sir Baldrick and his muddy friends! My cancer is not my fault, no amount of self examining would have made an ounce of differenc
.
Lily - I am glad you have your Dh to support you. Good luck.

Makingdo - tell your sil she is not alone. You and she can come on here and find info and hand holding. (We only plan our funerals once a week. The rest of the time we are quite chirpy and supportive.)

Betsy - how dreadful for you. So shocking when these things happen. Especially now.

Emin - I hope things go smoothly tomorrow. I will be thinking about you.

Mas - can you distract yourself with anything? I would tell you a joke but my memory is stuffed!

malteserzz Mon 17-Jun-13 22:22:16

A thousand women a week hmmhope it's not our week this week
Just watched long lost family I'm not sure it was a good idea really
Can we go back to talking about cake now ?

malteserzz Mon 17-Jun-13 23:17:57

Lily good to hear from you I hoped we hadn't scared you off!
Welcome to making do , she's lucky to have a lovely sil just let her talk really and if she's up to it take her out for little outings for coffee or to the shops to keep her busy. Time to think is horrible. Sometimes I do like to be on my own too though so follow her lead and ask her
Ned dinner sounds yummy and much more nutritious than my chips !
Gigs less aches sounds good and happy kindling
Amber I always enjoy reading your posts and normally end up smiling at the end so thank you smile
Night all sweet dreams no night postings hopefully xx

malt sorry, you asked earlier if I was ok,and I am, just being a bt weirdconfused
Lovely to hear from you again-lily and you are most welcome makingdo. V sorry to hear about your SIL - I remember the shock of my SIL's diagnosis ( before my own) and feeling desperate to help but also very scared for her - I knew a lots less in those days.
V sorry too betsy about colleague- awful shock. When I was at primary school someone's mother was killed in a road accident and we all had to go to the funeral( ours was a Catholic school and we went to Mass at school anyway each week) I remember that being quite alarming and frightening.

Good morning everyonesmile I slept for around 5 hours shock I feel much better for it so CHEMO lets be having you!!!

yeah...go get it emin !

NedSchneebly Tue 18-Jun-13 07:58:57

Sounds good EMIN !! Go for it today - thinking of you x x

malteserzz Tue 18-Jun-13 08:13:47

Yay Emin ! Hope it all goes smoothly will be thinking about you x

Copthallresident Tue 18-Jun-13 08:32:57

I hope it goes well for you EMIN and you are one of the lucky buggers who sail through wink

topsyturner Tue 18-Jun-13 08:46:06

Good luck for today EMIN
Make sure you take your anti sickness meds , even if you feel ok !

Gigondas Tue 18-Jun-13 08:50:51

Lots of luck to emin - first one is worst as you don't know how you will react .

malteserzz Tue 18-Jun-13 08:51:00

Trice was in Lorraine you watched yesterday ? Nearly turned over today but it was a positive story about a lady who has just finished treatment and looked very well so glad I didn't smilethey seem to be having a bc week

Gigondas Tue 18-Jun-13 08:52:11

Sorry pressed send to soon- so will be holding your hand as it will be ok and a lot easier after have done this. just ask if have questions and as topsy says take all the meds on offer even if feel ok.

jchocchip Tue 18-Jun-13 09:50:03

Just checked cancer research website It can't be 1000/ week in the uk alone. About 250/ week in uk in 2010 but mortaliity statistics don't take into account how long someone has lived with cancer. I saw one of the macmillan adds yesterday. I don't like those either...
Waves to everyone. late to work will put a brew on when I get there...

jchocchip Tue 18-Jun-13 09:51:29

+ve vibes for emin today.

smee Tue 18-Jun-13 09:55:23

Yay, Earth. That's the spirit. Hope they're all lovely and you're home safe soon. The others are right, it gets easier after the first. smile

MAS, I don't think your thoughts are freakish at all. I think they're very you. Which is meant in the best possible way. How's today feeling? Any less confusing??

Gig, love the way you moved from death to dinner. I haven't seen Lincoln either - was it good? How's the pump/ wound going? And how's the lego? Is it less painful now??

Betsy, how sad about your work colleague. Hope today's better. Hope Onc appt is okay later. I had FEC and Tax, so ask anything you want. Might help to remind you that I'm still here 3 years on and only slightly mad smile

Waving to makingdoo, though sorry to hear about your SIL. Is she stage 3, so it's treatable and that means it's deemed curable too? Even if she's stage 4, well so are lots on here and they've got no intention of going anywhere. Cancer in the end is sodding boring, and mostly we all live on. Once she gets her head round that, she'll need things to look forward to get through it all. Try and get her out for a walk or something each day. That does no end of good. Try and find the laughs too. We are good at that on here, but we get the dips too. So very tough. sad

Glad to see you back, Lily. Stick around. This place really does help, as does retail therapy. grin

Waving to all. Better get on. Got a work deadline. Am open to distraction though. Amber, I shall keep an eye on the news, for tales of mayhemin Westminster. grin

am going to dust a bit,then send some work off,collecting S later then will start on my new book !
smee am ok really- that's nice of you to say that am not being freakish - am really hoping I'll get onc rather than junior onc on Friday as he doesn't confuse me grin -lovely though she is.
T has 2 exams left ! one this afternoon and final one on Thursday. Am trying to persuade him to go to his music theory lesson tomorrow (he'll fuss as he would have to put uniform on for half an hour's lesson- is not compulsory but am not sure when he might be doing his theory exam)
Shall I get some M&S treats ?

snailsontour Tue 18-Jun-13 10:41:05

Hi girls, I know I've been missing in action for a while - no excuses, I've just been out and about and confess I've found it pretty difficult to keep up with all the goings on!

Betsy - I too had neoadjuvant chemo, followed by mx with full anc plus a prophylactic mx with immediate DIEP recon. My team were very supportive of my decision, and if there is anything I can help you with, pease ask.

kitkat I'm not sure of your situation as I can't find the previous thread... But I gather you are asking about rads and are worried about them spoiling a recon. Generally autologus recons stand up better to rads than implants, but all can be spoilt - but they can be corrected. Luckily I didn't need rads, but I was prepared for them as my team didn't know if i'd need them until they had the pathology reports back after the op - three or more nodes involved would have meant rads.

I'm more active of fb - probably why I run out of time to catch up on here blush and I'd be happy to be friends with you girls over there...

hey snails grin nice to see you !

malteserzz Tue 18-Jun-13 10:54:55

Hi snails always good to hear from someone who has got through this and is now busy smile
Mas m and s treats sound good

Feel a bit down today, tired I think plus it's 2 weeks since my op and I'm still waiting for results. 2 more days. Plus I'm bored! Moan over smile

Gigondas Tue 18-Jun-13 11:17:54

Can you not get stuck into some crap tv or a crap book malt? I re read Jilly cooper when waiting on results. What about towie or made in chelsea to take your mind off things. I would avoid the orange one who loves his kids as he goes on about his brother too much which isn't what you need to hear.

Hi snails - nice to hear from you.

Mas- do you have to ask about snacks? The answer is obviously yes.

Hello all,

So many posts I will never catch up! smile

But malt to reassure you my chemo experience isn't typical, most of my side effects are from the combination of chemo and the bowel surgery, which they wouldn't normally do together. The nausea is pretty manageable, I'd just got a bit behind with all my medications smile most people who have chemo do better than me, according to Dr W anyway grin

EMIN hope all goes well today. What a nightmare with transport! Glad you're feeling positive today. Just a warning one of the anti sickness drugs they do by IV might make it feel like there's ants in your pants! grin it isn't nice at all but goes away fairly quickly.

betsy sorry to hear about your colleague, what an awful shock sad

MAS yay for only two exams! M&S treats sound a good idea smile

Welcome makingdoo please do ask anything you and SIL need smile good that she has supportive family as that will definitely help

My sister has just gone to airport, she's off to Indonesia for three weeks with a few friends, so yesterday was busy helping her pack etc. hopefully they will have a fabulous time but I'm going to miss her horribly! sad I'm focusing on the fact that by the time she gets home I will be all finished with chemo and we can start getting on with our summer grin

Waves to everyone, I hope you're all having a good day so far smile

malt definitely watch some rubbish telly or do you have any magazines? Otherwise look in Mumsnet classics there are some hilarious threads! grin

malteserzz Tue 18-Jun-13 11:30:25

I'm watching this morning they have caprice on later who's pregnant and expecting a baby with a surrogate.
I'll be ok just a bit fed up, if I had an office job I could have gone back to work which would have been easier
Ruby hope your sister has a great time smilethanks for the chemo advice I will be asking lots of questions when it's my turn I'm sure
Gigs will avoid this morning tomorrow as the orange one is on doing a piece called my cancer diary

BetsyBoop Tue 18-Jun-13 14:14:09

Earth Sending positive vibes for your chemo. We are all here holding your hand smile

ruby hope you are feeling better today

snails it's great to hear your similar story smile Did you have many hoops to jump through to get the prophylactic mx? It is something I'm most definitely considering. Not sure about recon though. I definitely don't fancy implants and the other types of recon are major surgery (and me being a little mad odd, I quite like the idea of a choice of whether to wear my boobs or not grin) They haven't mentioned rads at all yet - I didn't realise it would depend on path results post MX, it would be good if I didn't need them.

smeeI hope you are healing well from your op (still in awe of you cycling to get your drains out!) All reminders of folks who are still here fit and well are greatly received smile Did you have any particular problems on FEC or Tax?

malt two more days....waiting definitely sucks!

Well my scarves arrived from annabandana today, it's all starting to get quite real now. Just waiting for my onc appt at 16:15 - any top qus I should ask? I've been googling for info on the Dr I'm seeing, he seems to be at the forefront of research and training in my area and I've not found anything bad, so hopefully that's a good sign grin It really is a case of "my life in their hands" so it's kinda scary...

malteserzz Tue 18-Jun-13 14:54:31

Good luck for your appointment Betsy. Can't think of any questions other than the usual about side effects, dos and donts, when you need to worry etc

smee Tue 18-Jun-13 14:55:30

Waving to Snails, helloooo... Lovely to see you. Don't worry about keeping up, none of us can really. Just nip in whenever. smile

Malt, rubbish tv not as good as a box set - I am genuinely astounded how much misery and cancer is on daytime tv. I mainlined 'West Wing', seem to remember being quite obsessed with it..

You're bound to miss your sister, Ruby. I'd bet she felt a heel leaving you too. When's your last one start?? Must be soon. Exciting! smile

MAS, hope you got some M&S treats. What's DS going to do with his summer??

((((hugs for Betsy)))) scarves arriving is quite a moment. See what Onc says on Fec/Tax, but they should talk you through possible side effects. There's a fair few of us on here who had that mix. Most common problems are nausea on FEC, and bone aches on Tax, mixed in with mouth ulcers/ change of taste - the chemo kills off fast growing cells and there are lots in your mouth. I didn't like FEC, but that was mostly because I am weird I reacted badly to all the anti nausea drugs, so they didn't work or they had to stop me taking them. Hugely unusual to be like that though. Tax was okay for me. Most women are like me, so get through it all and still manage to enjoy life as they do. I kept working (work from home, so it's easier), went away for weekends, even went swimming in the sea at one point on NE coast. Life's ahead I promise. Just a bit of a trudge through, but you can do it. x smile

Gigondas Tue 18-Jun-13 14:58:44

Good vibes for later- ask him to say when your flat period (period of low immunity) as I found it helped to plan for Internet shopping, gentle things to do at home in those days.

Wtaf? Orange one has a cancer diary? Forgive me if I am wrong but wasn't his poor brother the cancer patient.

And isn't caprice expecting twins? Not that I should know this stuff...

Just met the lovely Copt who brought brownies- had a lovely long chat with her and she is as lovely , funny and wise in rl as she is on here . Also had some excellent amusing alpha mum tales.

Gigondas Tue 18-Jun-13 14:59:45

Smee is much more high brow than me watching Howard's way.

malteserzz Tue 18-Jun-13 15:11:20

Gigs it's a nice story about caprice, she was quite emotional telling it. She had a mc then lots of failed ivf so found a surrogate, then after the surrogate became pg she found herself pg naturally. The 2 babies are due within 4 weeks of eachother smile

Bet meeting copt was lovely

Smee I will look for a good box set

Been out for a nice walk in the sunshine, good job as its gone really dark now and looks like rain

Copthallresident Tue 18-Jun-13 17:15:36

It was great meeting gigs who is also lovely funny and wise, wonderful to meet a nice person in Twickenham smile. If feeling creaky she looks on surprisingly good form given the ops and infection, though disappointingly the bionic bits do not show grin but then a Borg in Twickenham would stand out a bit. And I am totally in love with little gigs, if that ship hadn't well and truly sailed I'd be getting broody. She is such a sweety.

Betsy I too shied away from implants and a serious operation and I am twelve years on lopsided and boobless on one side. I could still have the operation and there are times mainly when on the beach when it appeals, but most of the time it really isn't an issue. It's definitely an option, and one that my Consultant thinks is best in terms of your body if you can live with it psychologically.

You can also add in the choice not only whether to wear your boob but also whether to fling it across the room, a fairly unique party trick wink

Ruby What are your plans for your chemo free summer with sister? I think it probably needs minute planning, until she gets back.....

I hope all has gone well for EMIN

Copthallresident Tue 18-Jun-13 17:17:33

oh and Betsy with one node involved and a MX I wasn't recommended radiotherapy

oh I'm jealous at this meeting of gig and copt - I could whizz up the M3 and join in grin
smee didn't go to M&S in the end (lazy person) but there are choc chip cookies left from yesterday ! I think T will spend the summer slothing about -though will plan some trips to London town etc. We're off to Suffolk in July too. I don't think he'd manage a holiday job somehow- will need to get him in a practical mode for the next holidays so he can get a job.
I am craving some crispy snacks that resemble wotsits but are thinner and taste of peanut butter- used to get them at a local farm shop but that burned down and haven't seen them since.

Copthallresident Tue 18-Jun-13 17:43:53

Next time MAS! or we could whizz down...... btw meant to say you are not weird at all, or we are as well. Possibly that second point is true....but then you would be one of the less weird ones blush grin

ooh ! yes,let's eat cake somewhere !!

KurriKurri Tue 18-Jun-13 18:52:26

Dashing in to say Hi, - sorry have not been around - I seem to have a lot on atm. and DH is away so am busing everywhere. off out in minute to a committee meeting (fortunately getting a lift!) Hope everyone is OK, - will catch up on all the posts asap. xx

am envy of all the meeting up and cake eating grin

Just back from first chemosmile everyone was spot on. The first one was absolutely fine, no pain and it went smoothly. I had the flush out thing, then something for infection I think followed by the chemo and another flush to finish.

When we went in we had a long talk with my nurse who went through every side effect I might display and she gave me some mouth spray and anti sickness pills.

My session (1 x weekly) 16 in total doesn't sound too much so we're up and running. Is it ok to have wine I will share smile

notJenkins Tue 18-Jun-13 19:35:14

Can I sneak back in with my tail between my legs ? Work has overtaken me and I am back on that treadmill of work, children, housework etc etc etc. I hate it !

Having a dip today as I have remembered that I had / have (?) cancer and need another scan in a few weeks. It has hit me hard as I sort of worked hard to forget about it and be 'normal' it but it has all come back and is not over.

New estate agents today so hopefully the house will sell soon ish and I can get off this treadmill.

Sorry I realise I have been thoroughly miserable. I promise to be more jolly next time.

ned isn't it about time we had a lunch ?

notJenkins Tue 18-Jun-13 19:35:54

Glad it all went ok earth

kitkat1967 Tue 18-Jun-13 19:38:50

So have returned from meeting with Surgeon. Still seems likely mx to ensure clear margins (I'm all for that) but he says it will be chemo then op with temporary reconstruction, then a month off, then 1 month of rads, then 6 months off and finally permanent reconstruction. That's more than a year away sad - I know that's not all treatment time but it just seems an age.
I had clear nodes but having rads anyway due to size of tumour.

Malt - I have been working from home but went into the office today and I feel so much better for it so I really feel for you having to be completely signed off. I am going to make the effort to go in more often - now I've done it once and answered some questions!!
Mind you I went from work then to shops then onto appointment and by then was very concious of my stinky armpit!! - now the dressing is off I will shave (with new electirc razor) and use deodorant tommorrow blush

Hope it went well today EMIN - I'm keen to get your update grin

Betsy - I'd not thought of googling my consultand and onc - off to do that now smile

kitkat1967 Tue 18-Jun-13 19:40:53

great news Emin - what regime are you having? I'm so new I thought everyone was on a 3 weekly cycle blush

malteserzz Tue 18-Jun-13 19:50:56

Earth glad it all went ok bet the next time it won't be so scary ? How long did they say it would take for you to get side effects if you get them, fingers crossed you don't

Kitkat it does seem to be a long haul doesn't it but I guess you will be able to carry on normalish life in between things. I do feel very guilty not working and getting bored there's only so much shopping and having people for coffee you can do !

Kurri lovely to hear from you x

NotJ lovely to hear from you soon good luck with the house sale and don't apologise for being down

Mas those peanut snacks sound yum I love peanut butter !

Waves to everyone else have a good evening

malteserzz Tue 18-Jun-13 19:52:21

Kitkat I'm clueless about a lot of it too ! Have you got a date for your op ?

malteserzz Tue 18-Jun-13 19:53:10

Sorry meant to start chemo as you're having that first aren't you

Lilymaid Tue 18-Jun-13 19:57:50

Just reporting in to say that I was at work today, as normal. Much easier to get through the day with a load of work to do! I'm reading all the posts and sending wine to all of you - why isn't there a chocolate option?

kitkat1967 Tue 18-Jun-13 20:02:16

Malt - first chemo on Thursday. Picc line tomorrow. After Thursday I guess it will be BAU for a while then - all tests/scans are done so no more results to get - just in it for the long haul.

BetsyBoop Tue 18-Jun-13 20:03:50

earth glad the chemo went well

notJ - I'm obviously no where near where you are yet <tries not to look enviously at someone getting back on with life again> but I should imagine it's pretty normal to have a wobbly moment or two before a scan. We never really get to leave cancer completely behind do we?

Well my onc appointment went well. The Dr went into lots of detail. They were running over an hour behind though, but it gave me chance for a good chat with my BCN (she gets lovelier every time I see her <heart>) I talked to her about the option of a double mx - she said the surgeon would want to talk to me and I would also probably have to have a session with a psychologist, but they generally support your choice if that's what you want and they are sure you understand all the pros and cons.

I'll be having FEC-T chemotherapy. Three doses of FEC then three doses taxotere, with a three week gap between each treatment cycle. That's a fairly standard regimen I think? Then five weeks or so after the last chemo cycle I will have my mastectomy surgery. They will also start hormone therapy (tamoxifen) after chemo. They can't confirm if I will definitely be having radiotherapy until they get the pathology results after surgery, but at the moment it is more likely than not that will follow too given the size of the tumour.

The consultant wants to get cracking as soon as possible, i.e next week, so hopefully I'll get a phone call tomorrow to let me know on what day my invitation to the cocktail bar falls. (It was 17:55 by the time I got out from my appointment, so no around to organise it today!) So in terms of a plan, my last chemo should be w/c 7/10 and my surgery mid-November. He says if the scans coming up (Thurs and Tues) do find any secondaries (everything crossed they don't) then the only thing that would change is that they would give me an extra drug for bone mets.

Lets get this show on the road. <eek, I need to get organised> Any top tips for chemo?

kitkat1967 Tue 18-Jun-13 20:12:04

Betsy - sounds like we are on the same path then. I am having FEC (and only FEC?) - same op & rads as you and also Tamoxifen.
I've already had my scans and waiting for those results was the worst bit for me so fingers tightly crossed for you (you already had clear nodes though didn't you?).
Looks like you will be 1 week behind me wink

makingdoo Tue 18-Jun-13 20:19:33

Evening All - Thanks to everyone for being so welcoming. It will take me time to catch up on all your stories properly but at the moment I am so grateful to find a group of honest and courageous people!

I spent today with SIL. She is very emotional and I just tried to listen and take her lead. She had her first chemo on Thursday and had a really rough weekend - she felt like it left her feeling a bit loopy, like she was loosing her mind. Real vivid horrible dreams and just didnt know how to control herself. Does that make sense?

Can I ask a question about hair loss? This is something she is finding really difficult to accept. She has really long hair that she loves. She is going on Friday to sort a wig out. She wants me to shave her head in preparation. Will her hair fall out this quickly?

Im worried about how she will cope over the next few months. sHE is signed off work and lives in an isolated area. She hasnt told any firends about her diagnosis - she is fiercely private and only immediate family know. I worry that we cant be there all the time and that she wont cope being on her own.

Im sorry to come on here with doom and gloom. I can offer out some wine and chocolate biscuits if that helps? smile

BetsyBoop Tue 18-Jun-13 20:30:21

kitkat if you don't mind me asking, what size do they reckon your lump is? Am bricking it for the scans to check for secondaries, definitely the worst bit. I'll hold your hand on Thursday if you hold my hand next week? smile

making I only know from reading as opposed to personal experience (starting chemo next week) - hair loss can very from person to person and also depending on what chemo drugs you are on. Typically it starts to fall out 2-3 weeks after the first treatment. Some people just get thinning rather than losing everything. Usually it just gradually gets thinner over a few weeks, but for a few people it can all fall out suddenly. (btw there are loads of great info books you can download from the breast cancer care site - please keep posting here too, but just so you know they are there, there are booklet for just about every topic you can think of!) I can only talk personally, but I have found it so much easier since friends and family know (we didn't tell anyone for 6 days) and I can't believe how lovely and supportive everyone is, even people I don't know that well really.

makingdoo Tue 18-Jun-13 20:40:26

Thanks Betsy I will have a look for those booklets. I want to understand as much as possible so that she doesnt have to explain everything to me. For some reason she is convinced that her hair is going to fall out if she touches it. She hasnt touched it since she had chemo on Thursday.

Good luck for next week, there is so much support on here and lots of hands for you to hold. Including mine smile

kitkat1967 Tue 18-Jun-13 20:41:37

Betsy - 6 cm - or in their words 'very large'. Completely invisible on mamogram and ultrasound though. It's on the outside of the right breast - near the armpit. They told me that the protocol is that anything over 3cm requires a CT scan. I was bricking it too - after those results it feels like it has got a lot easier. I also had an MRI (due to tumour being invisible) and they found a lump (also invisible) in the other breast but thankfully that one was benign.
Also as my breasts are not large it limits the surgical options.

BetsyBoop Tue 18-Jun-13 20:48:06

You are my official twin kitkat smile Mine is 7cm - or in their words 'that's quite a large mass'. Mine is also on the outside of the right breast near the armpit. (I also have 2cm & 2.5cm bits in the R breast too) You give me hope that it is possible I could be clear elsewhere - everything tightly crossed. (FNA on dodgy armpit node was clear, but of course that's only one node & relying on needle hitting the right spot, but clear so far is better than not smile )

topsyturner Tue 18-Jun-13 20:57:30

Making the loopy feeling your sil is having is prob down to the steroids .
They give you a dose in the chemo , then they also give you oral steroids for a few days afterwards .
Sent me absolutely loopy too .

As for the hair . Normally around the 2nd dose of chemo it comes out .
When mine started coming out , I shaved it all off .
But I was never that attached to my hair .
She will be entitled to an nhs wig , breast care nurses can tell her who they refer to .

kitkat1967 Tue 18-Jun-13 20:58:02

ah Ok - I had 2 nodes removed - sentinal and the next one and got my all clear (well almost all clear - so clear enough) on them.
My consultant said even in ladies with tumours of my size and position there was a 29% chance of clear nodes - I thought that was rubbish odds but i got lucky I guess smile

Remind me what type you have - mine is Eostrogen + (very strongly apparently). But un-aggressive (5% whatever that means).

kitkat1967 Tue 18-Jun-13 20:59:28

Betsy - also they made me feel really stupid with all the 'that's a very large lump' comments which I didn't appreciate sad

trice Tue 18-Jun-13 20:59:55

Makingdoo - what chemo is she on? I didn't loose my hair, it just went thin. I have a couple of seriously scary wigs though. I spent ££ on them but never wore them, they are synthetic and look it. I would recommend human hair ones if she wants to wear them out of the house. (if she can afford them). She may be happier with a nice scarf or hat.

Usually the hair loss is pretty quick when it does happen and it may be easier to cope with a nice short haircut first so it doesn't fall out in clumps in the shower.

Would she consider counselling? I had a couple of sessions at a haven center which really helped me. It is perfectly normal to go a bit mad when all this happens to you. If she has had steroids with her chemo she will be climbing the walls a bit, it goes away thankfully. Tell her to hang in there.

Emin - glad it all went well. You handled it like a boss as ds would say.

Notj - you are allowed a wobble. Hope your scan is quick and results clear.

Betsy - good luck with picc line.

I have been sunbathing, reading a book and having coffee with friends today. Very pleasant. Very tired no though.

snailsontour Tue 18-Jun-13 21:03:17

Is it lobular kitkat? They can be elusive on mammograms...

Betsy, my team were brilliant regarding prophylactic mx, but I did have to see a Psycologist to make sure I was of sound mind - yeh rightsmile

And oh, my hair hung around till well after my second chemo; I had the standard FEC/T - and found Tax easier than the FEC - although I pretty much sailed through all 6 infusions. No tamoxifen, but I did have Heceptin for the year.

My secret weapons were drink plenty of water, and take a dose of Manuka Honey each day.

kitkat1967 Tue 18-Jun-13 21:05:46

snails - i don't know - nothing has been mentioned - do I need to know?

malteserzz Tue 18-Jun-13 21:08:21

Making I'm no expert but I would have thought going from long hair to shaving it off will be a huge shock for her, I think when the time comes for me I will have it cut short first.

Trice glad you've had a good day it was sunny here too but then rained at the end of the day not sure why I often do a little weather report on here grin

Betsy and Kitkat you both sound very organised and knowledgable about things, Hope it goes well for you both x

Watching the call centre on bbc3 glad I don't work there !

makingdoo Tue 18-Jun-13 21:20:55

topsy Thanks I didnt realise about the sterioids having that effect.

Trice Im not sure exactly what type of chemo. I didnt want to ask too many questions.

She is going to a human hair wig and has already had the consultation. I just dont ant her to put herself through the trauma of shaving it all off if she doesnt need too.

She spoke with her care nurse yesterday and they have referred her for counselling. Im surprised this doesnt happen automatically actually.

Trice sounds like you had a lovely wee day

Copthallresident Tue 18-Jun-13 21:24:57

makingindo mine did come out in the first cycle but it must have been the fourth week (?) I had a bad infection in the second week of my first cycle and spent a week in hospital but I was well enough by then, and my white blood cells had risen enough for me to go out but to delay the next chemo so it must have been the fourth week . So I was at a mothers coffee morning amongst trophy wives with gorgeously coiffured blonde locks and alpha mothers when my hair started quite spontaneously to go south and bestow itself on my cream wool cardigan and the cream designer sofa. It was tied back in a slide and I did try to keep trying to put it back in place but it kept escaping. The mother whose immaculate home it was looked somewhat repulsed and put out (I know they do a good pet hair Dyson but do they do one for shoulder length human hair??? grin )

So not touching your hair ain't going to make any difference. It didn't actually all fall out but I shaved it off because I looked like one of those old crones they used to have on Star Trek after the elixir of youth had worn off.

I had a very expensive human hair wig that was very much thicker than my own hair because I had always wanted thick hair but it made me look like a drag Queen so I would wait to choose a wig, I hardly wore it. A lot of human hair wigs are made with Chinese or Indian hair, not many westerners being in the market of selling their hair, so it tends to be thick and not weedy and lank silky like mine.

BTW snotty trophy wife ran off with a woman so clearly the whole edifice of her life was a sham, so it was probably real life intruding that disturbed her so much. I gather they are very happy and living in Oxfordshire, bet they don't have cream sofas....

gigs Just discovered I still have the anti shoplifting tag on my cardigan blush. If you noticed I am neither a shoplifter or criminal who has been tagged. Really annoying as I have of course thrown away the receipt

makingdoo Tue 18-Jun-13 21:38:53

Malt Thats my fear too - it will be such a shock for her. Im no expert either but I imagine a gradual loss ould be easier for her to come to terms with.

Copt Your story made me smile. I really think I need to get SIL on here as I think this would be therapy in itself!
Shes adamant on the wig so hopefully it will turn out ok for her

BetsyBoop Tue 18-Jun-13 21:47:06

>>also they made me feel really stupid with all the 'that's a very large lump' comments which I didn't appreciate sad

Same here kitkat - they looked at me like they didn't believe me that it had only emerged from hiding over the past few weeks...

I'm ER+ too (and PR+ HER-) Mine is mixed lobular/ductal - Lobular is notorious for hiding, so if I was guessing that's probably what yours is too.

malteserzz Tue 18-Jun-13 22:41:40

Making I've been surprised with the lack of support generally, like you say you'd think you would be offered counselling.
Copt that must have been a shock I imagined hair would fall out at night or in the shower. I will search for a nice wig I can't imagine myself in a scarf hmm

malteserzz Tue 18-Jun-13 22:57:04

As I wait for my little pill of peace to take me away I will say night night sleep tight hope no 4am postings and I hope Emin is still feeling ok
I'm going to drive tomorrow I'm going stir crazy and feel absolutely fine, won't go too far just a bit of retail therapy and to buy ds birthday cake. Freedom !
Xx

BetsyBoop Tue 18-Jun-13 22:57:31

Support seems to vary from area to area, which is wrong, everyone should have the same good support. My BCN as absolutely fab,I <heart> her. She was also quick to pick up on me being a "facts" and fine detail person and not so much touchy feely. It's quite a skill to be able to read people and support them in a way that's right for them. I'm sorry you don't all have this sad

malteserzz Tue 18-Jun-13 23:05:52

That's really good and you'll have the same one each time?I've seen mine twice and she was nice and went over what had been said and made sure we understood but I thought she might ring after a few days and see if I was ok ( naive obviously !) didn't see her at my Pre op or when I had my op can't really remember what she looks like now !

KurriKurri Tue 18-Jun-13 23:43:50

Hi all just popping in before bedtime to say hi to makingdoo - sorry you are dealing with this horrid disease in your family atm. I just wanted to mention my hair loss experience in case it is any use to you/your SIL. I had long very thick hair and lost it just before my second cycle of chemo (despite cold cap with didn't work for me) my hair came away all in one go - it came off my head like a hat which was pretty disconcerting - other people lose it more gradually I think, and don;t always lose it all - have wispy bits left.
On reflection I think the hair loss would have been a bit less traumatic if I'd had it cut short beforehand (I didn't because I was trying the cold cap), and from what I've read of others experiences a lot of people would recommend getting it cropped before chemo to lessen the impact.

I would also say that my hair has never grown back the way it was, I keep it short all the time now, and in some ways the fact that my ;old hair' never returned took more getting used to - the new hairstyle is OK, but I didn't choose it, it was forced upon me, so I slightly resent it!

Sending love to all - will catch up properly tomorrow - very long and dull committee meeting tonight - It thought it would never end, I was stifling yawns throughout!

Glad the first chemo went OK Earth. xx

BetsyBoop Wed 19-Jun-13 04:54:38

Urge, had a really weird dream about feeling cancer spreading round my body. It's given me the heeby-jeebies so now I can't get back to sleep...

BetsyBoop Wed 19-Jun-13 04:55:34

And of course urge should be urgh, damn autocorrect...

trice Wed 19-Jun-13 07:23:26

I had a dream last night that I was one of the hairy bikers and I was making christmas dinner! I had a beard and everything, it was quite good fun. I enjoyed riding my BMW it was a joy to park. Sorry your dream was not as enjoyable Betsy.

I met my bcn once five years ago. I am very envious of people who had/have a decent amount of time or contact with a supportive bcn. It does seem to vary.

Has your sil thought about donating her hair Makingdoo? It might help her if she knew it was going to be used to help children with cancer.

I used to wish that my cancer could be put to use in some way. I wish I could run into a burning house to rescue a child or something. Obviously I would be rubbish at that sort of thing. I do wish I could at least donate my organs. It is so pointless.

kitkat1967 Wed 19-Jun-13 07:42:58

Malt -just thought I would mention that I will be able to use deodorant today as all my dressings have been removed and surgeon was happy with the healing grin - hoepfully no more stinky feeling!!
I didn't actually ask if I could use it but he said it had healed well so I reckon I must be OK.
picc line for me today then a visit to fit the cold cap.

kitkat1967 Wed 19-Jun-13 07:45:22

Betsy - are you having the T bit of FEC-T as you are also PR+ - is that how it works?

amberlight Wed 19-Jun-13 08:11:42

FEC + T is more effective against cancer than just FEC by itself. FEC is alright for well behaved cancers. Anything larger or more rudely behaved tends to get T after the FEC.

Wigs: google Rene Amore wigs. Mine really were lovely, and half the cost of human hair ones. I don't have shares on the company, either.

And I wasn't arrested yesterday!

malteserzz Wed 19-Jun-13 09:06:59

Trice it does seem pointless sometimes I agree, what are your plans for today ?
Kitkat good news about the deodorant I may as well wait and ask my surgeon tomorrow now, tomorrow eek!
Amber I googled those wigs and watched a YouTube video of them too they do look good. A lady I know has permanent hair loss after radiotherapy on her head do I will ask her where she goes locally to get her wigs, she has a few for different occasions and gets them cut and highlighted
Betsy dreams are horrible sometimes sad
Mas saw the link you put on FB wish that had been available to me would have saved a lot of waiting

What's everyone up to today ?

kitkat1967 Wed 19-Jun-13 09:18:10

ah thanks Amber - think mine is large but well behaved so that must explain why I'm not getting the T bit. I didn't want to miss out on anything I needed blush

malteserzz Wed 19-Jun-13 09:23:23

My mumsnet i phone apps not working today anyone else ?

topsyturner Wed 19-Jun-13 10:11:55

My phone ap has only just come back on line Malt .
I was beginning to get the jitters without it ... grin

amberlight Wed 19-Jun-13 10:38:12

Kitkat, Taxotere would only give you another half a percent survival chances - (I've just plugged your details into their medical calculator for it) but it carries more than a half percent chance of doing serious mischief since it's a sod of a chemical. And your survival odds are very good indeed even with a large lump. They use T when it's an aggressive sort or has escaped from the breast. So I can see why the Onc went for just FEC.

<adds in the caveats about I'm Not A Doctor so Take No Notice Of Me>

amberlight Wed 19-Jun-13 10:44:04

<goes to get strong tea, having just reminded herself of what the same calculator says about her own odds>

kitkat1967 Wed 19-Jun-13 10:46:10

wow thanks Amber you are very knowledgeable smile

The size of the lump seems to be important from a surgical point of view but not so much to determine the treatment plan. Seems there are lots of 'grey' areas where treatment decisions have to made - eg. yesterday my surgeon told me that as my lymph nodes were 'effectiviely clear' (there was one borderline micro mets on the first node only - out of 2) he would not take any more out as the benefits of removal were out-weighed by the benefits of keepng them.

snailsontour Wed 19-Jun-13 10:49:54

kitkat, There are many different types of bc, Ductal which is in the milk ducts is the most common, then Lobular (in the lobes). The treatment is typically the same for both - any differences are usually due to the tumour profile ie hormone status, HER2 status and Grade.

snailsontour Wed 19-Jun-13 10:54:05

And Amber is on the money re FEC and FEC/T - and the Rene Amore wigs!
Not that I am an expert - I bought three - and never wore them! I hang my head in shame here, but I think wig shopping became a distraction for me from the serious business of cancer.

Gigondas Wed 19-Jun-13 11:11:57

Another vote for rene amore wigs. The human hair ones were eye wateringly expensive. That said wigs are horribly uncomfy in heat for any length of time so a hat/scarf/buff may be good alternative ( I got big sunglasses so could perfect what I thought was Maria callas look but pro ably looked more bet lynch after a night out).

Hands amber a biscuit - remember there are lies, damn lies and statistics.

Annoyed at iPhone app being pants but probably just as well as need to work.

Copt- after our discussion about sleeping, we had another bad night with mini gig refusing to settle til gone 9 (I know this sounds early but if you are up pre 6 that is dh and my adult time gone ). She is going to goon dogs kennel if this keeps up.

malteserzz Wed 19-Jun-13 11:18:21

My app is still not working sad
Drove today ! Only to sainsburys but freedom !
Talking wigs my friend told me about a fringe on a headband to wear under hats snd scarves which she said worked for her too

Morning all,

Hugs to amber and anyone else who needs them! When the statistics freak me out I remember that the genetics specialist said the chances of this happening to me were less than 1 in a million, so if I can be that unlucky then I figure we can all be lucky too grin and well done for avoiding arrest amber

Had a cat try and get into my bedroom yesterday, well would've succeeded if I hadn't shouted at it. Felt bad as it was quite cute but it's not our cat! So I was a bit worried it would sneak in during the night and get into my bed or something hmm

makingdoo just to weigh in on the hair issue, mine hasn't all fallen out but a lot is coming out at the moment. I'm halfway through my penultimate cycle of chemo. It isn't noticeably thinner though apart from that when I put it in a pony tail it feels thinner to me, if that makes sense. No bald patches or anything. I think your SIL would be better waiting to see if it does come out before cutting it all off as otherwise would be a rather unnecessary trauma if she loves her hair sad

copt grrrr at tag, did you pay by card? They might accept a bank statement.

malt I'm off to the first session of my Macmillan course today grin I'm such an eager beaver, it'll be good to get out of the house for once! I've got my notebook all sorted and just about to get up and showered and even shock might put some make up on so I look respectable! What are you up to?

Have a lovely day everyone! I shall be back later to share any wisdom from the course if it's likely to be helpful for anyone smile

Cross posted, eek at mini gigs wakefulness, sounds exhausting!

And malt enjoy your freedom smile

malteserzz Wed 19-Jun-13 12:34:28

The app is back !
Ruby hope your course goes well and the people are lovely. I do think it makes you feel a bit better when you make the effort to shower, do hair and put a bit of make up on

Gigs do you think it's because it's warm and light that little gigs can't settle? Frustrating for you

I've been to sainsburys and need to wrap ds presents he will be 10 on Saturday. Bit crappy timing with my results tomorrow but he was desperate for a sleepover. If I'm told bad news and cant cope with it dh and his parents will be on sleepover duty. Didn't want him not to have a nice birthday just because I'm ill

Wish I could link but just read on bbc news about a trial they've been doing which showed that radiotherapy was just as effective on lymph nodes as surgery

Sometimesiwonder Wed 19-Jun-13 12:38:24

Malt - my dd's 10 on Sunday. I hope he has a lovely day. x

Have read but now need to dash as have oodles of work to do, and it's all very hard for my poor brain to understand sad. Much love to allxx

HerNextDoorAt21 Wed 19-Jun-13 12:41:42

Just droppin in to say hi and I am reading all your posts.

Makingdoo it woul dbe lovely if we all had someone like you lloking out for us and our welfare. as for the hair loss, i was very lucky not to have to have chemo or rads but did try on topsy's wig (she lives next door to me) and it was hot and itchy. topsy looked great in buffs and scarves as there are some really nice ones.

hellymelly Wed 19-Jun-13 12:42:59

gingerroots suggested I come here, I've posted in health. My friend has a tiny baby and has had lumps in one breast since a month or so before the birth (at least that is when she noticed them). She had an ultrasound yesterday (it was thought to be mastitis before then) and there were three clear lumps. She had three chunks taken out to biopsy. I am worried sick now, she has a weeks wait for the results, why do they take so long? Could it be something harmless? They aren't cysts is all I know. What can I do to support her this week (and beyond if the news is bad). What is most helpful? Her baby is her first, he is 4 weeks old, breastfed but from the other breast as he wasn't able to feed properly from the breast with the lumps.

BetsyBoop Wed 19-Jun-13 13:01:50

>>( I got big sunglasses so could perfect what I thought was Maria callas look but probably looked more bet lynch after a night out).

Now this is why I love this thread gigs - you do realise you just made me spit my tea all over my laptop grin

hellymelly sorry to hear about your friend - did the radiologist say anything when they did the biopsies? It depends on the how "bad" it looks what the risk is. It could be benign lumps. However the only definitive answer is the biopsy, anything else is guessing (educated guess or not!)

My radiologist basically said (in much kinder words) that he wasn't expecting it to be a good result based on what he was seeing, so I was prepared when the news came.

My clinic does the screening on a Mon/Tues and the results on a Friday as they take a minimum of 48hrs in the path lab. A week is a long wait, it might be worth her contacting the breast care nurse to see if there is any way she can get them any sooner.

The waiting is truly awful, just be there for her and listen if she needs to talk. (I would normally add "and distract her if you can" but with a 4wk old she is will be fairly busy already!)

amberlight Wed 19-Jun-13 13:02:38

Hi hellymelly, what a situation for your friend. Yikes, not the sort of tests and worry she was hoping for, for sure! Yes, the tests often do take a whole week, because of the amount of time it takes to prepare the samples and get the right specialists to have a look. The waiting is often the absolute worst bit. Nearly everyone finds they calm down once they get an answer either way.
If it helps, 9 out of 10 people find that their lumps aren't cancer.
So that only leaves 1 in 10 people with lumps which need cancer treatment.
If you take ten people with breast cancer, 9 out of 10 of those will go on to live to a ripe old age, these days. The treatment isn't fun, but it's that good.
One person out of 100 had a really rudely behaved sort that needs long term treatment. Even then, most just live for years and years but on occasional chemotherapy etc. It's becoming a bit like managing diabetes, etc - a long term nuisance mostly, rather than a killer.
Not everyone is lucky, no. I've had a friend die, so I'm aware of what can happen. But the odds really are good for most people.
Support her by taking her mind off things as much as possible - trip out, silly DVDs, and by just listening and being calm and being there. Maybe get her to come on here and we can cheer her up and do some hand holding too? We've all been there and know what it's like.

BetsyBoop Wed 19-Jun-13 13:11:11

kitkat - I'm getting the T bit as my tumour is multifocal so they want to bring the biggest guns out to blast it.

Reading between the lines I think they are also concerned about the possibility of spread (given size & multifocal) and even if the scans all come back clear (please God, fingers crossed) they often can't detect any teeny tiny bits of stuff going on <note medical terminology> so they can get blasted too. grin.

As yours is well behaved I guess they don't think you need it, which is a good thing. smile

hellymelly Wed 19-Jun-13 13:25:35

amberlight thanks so much for that. I am really heartened to hear that there is a decent chance the lumps are something benign. And the stats even if it is cancerous are great to read too. I know three women who have had breast cancer, 20 years ago (in her 20s) 5 years ago and two years ago. All are in good health now, so that is reassuring me too. Your post has made me feel a lot less scared.

hellymelly Wed 19-Jun-13 13:34:45

betsyboop, as far as I know the radiologist didn't say anything, but I am waiting to talk to her today, we just had texts yesterday and she went home to bed after the news. Possibly she has been given some idea, I don't know. Would be good if she found out on Friday, rather than it being next week, I hope they can rush it through.

Copthallresident Wed 19-Jun-13 13:43:21

Helly the vast majority of lumps turn out to be harmless, even when they are not cysts, breast tissue can get lumpy in response to hormones. Even those lumps that are malignant are often relatively innocuous and easily treated. Lots of us on here had relatively nasty ones and we will tell you that though the treatment isn't nice it is doable, and we are evidence it almost always works.

Sadly some women do get nasty lumps when pregnant and breastfeeding, it happened to one of my friends and at the time 50% of all Breast Cancer found in women under 50 was associated with pregnancy and breastfeeding so it is good your friend has now had a biopsy done, sadly too often women get told it is mastitis and sent away.

The waiting for results is awful, even if it is bad news then somehow knowing exactly what you are up against is better than uncertainty. I don't think a week is unusual as the biopsy has to be sent to a lab and examined and tested carefully. I really appreciated the little things in the early days, practical help with looking after the children,
casseroles and cakes, just having someone there showing they cared, someone to talk to. It is important to let people react in their own way, there is no normal reaction we all handle anxiety and fear differently and whether you go into denial or weep and wail endlessly it doesn't matter.

However key thing is it will probably be nothing really nasty. I hope so because it is really shit when this gets in the way of those precious first days with your baby. Do let us know.

Copthallresident Wed 19-Jun-13 13:56:00

gigs No not goondogs kennel, that would be party central. No, threaten her with Big Copts mother, the controlled crying Nazi..... She obviously heard us, I should have talked a little louder about the only way that Big Copt could get me to come into her room at night was to shout that her head was stuck!

Gigondas Wed 19-Jun-13 15:57:39

I may send her round copt. Malt I think light , heat (tho we have air con) and teething play a part too.

Helly- sorry for your friend but can't top what others have said. There is no good time to have cancer but I was dx when dd2 was 3 weeks old. If it is bad news , am happy to share experience of coping with a baby. As you can see from post above, life goes on after/with cancer and a baby, if it comes to that for your friend.

Went to watch sports day which was fun but I did have to walk slowly with lots of stops and my back is killing me. I know I have a problem there as radioing that area but am sincerely hoping its something that can be helped as this is a new area of ache ( that said sitting on hard grass for an hour and a half probably didn't help).

malteserzz Wed 19-Jun-13 16:34:48

Gigs sitting on grass is always achy at the best of times hope you can rest up now
Hope everyone's enjoying the sun though it's a bit muggy here

hellymelly Wed 19-Jun-13 16:53:47

Copt Hall, is that is Essex, near Epping? If so is it still derelict?

Welcome hellymelly (and waves to gingeroots if you're lurking smile ) fingers crossed for your friend that it's harmless.

Course was quite good, I felt so good just to be out of the house! Like you say malt doing my hair and make up made such a difference to how I felt, I felt properly human rather than feeling like I have a massive I HAVE CANCER sign on my head grin although had a bit of a wobble before I went out as more of my hair fell out while I was washing it and it has now lost its shape round my face - my hair has always had a funny sticky up bit at the front which I found annoying but miss it now it's gone! It will be so frustrating if my hair doesn't last until the end of chemo now I only have one cycle left sad

ANYWAY it was only a taster session so I don't have much wisdom to share yet, although there's an exercise programme that is recommended if anyone is interested, I'm going to have a re-read of my notes and google it in a mo smile

But sounds like it will be very useful, lots of info about planning ahead, setting goals, pacing, dealing with fatigue, mindfulness, relaxation... smile

I hadn't realised quite how much of a slump I've been in but going out really helped and I must do that more often as I'm feeling a lot perkier and more myself smile

The man next to me had terminal lung cancer and was told over two years ago he wouldn't make it to Christmas, two months away, and he currently walks eight miles a day!

Popped into Harvester on the way home and now I'm absolutely stuffed! grin

I hope everyone has had a good day smile

Sorry this was all me me me

gigs did big gigs win any races? I hope the achiness eases up or that they can help with it.

malt muggy here too but glorious sunshine earlier. How is present wrapping going? Have you got midnight feast supplies for the sleepover?! grin

copt did she get her head stuck in the cot bars?!

sometimes hope work is going well.

Waves to amber I hope you're having a good day

Copthallresident Wed 19-Jun-13 18:00:32

Ruby No, just another of her clever ideas, as always she was stood up in her cot, which we kept her in until 3 blush, grinning. She also enjoyed the sport of cot hurdling. She was quite creative about it, I caught her at it once, it was a sort of flosbury flop but grabbing the nursing chair on the way over to right herself!

I'm glad today was so good for your morale and actually enforced trying out of lesbian hair post chemo is actually quite fun.

Helly No it is a road I don't live in in Twickers. I first got into this damned addiction Mumsnet as a result of a local schools issue on which gigs and I could bore you for hours..... (I really wouldn't go there grin)

malteserzz Wed 19-Jun-13 19:08:26

Ruby I'm glad it went well you sound very positive smile do pass on any tips. When do you go again ? I hope you manage to hang on to your hair

I'm dreading getting my results tomorrow don't know how I'm going to sit in the waiting room and listen to what he's going to say. Is running away an option ?

kitkat1967 Wed 19-Jun-13 19:30:59

A big day for you tomorrow then Malt - when I was waiting to get my results I actually didn't think i would physically make it into the room blush - running away was so tempting. Whatever you get told it will be better from then on.

Betsy - when are you getting your scan results - is that also tomorrow?

Copt - with hindsight I think my tumour is following pregnancy (youngest is 9) as that boob stayed bigger then the other one - ironically i wondered why the smaller one had shrunk more. The lump has only recently gone really hard but the onc thinks it has been there for many years changing slowly.

Gigs - we had sports day on Saturday and I was wiped out afterwards - I think it is fairly normally when you have to do lots of standing/sitting and watching.

I am exhausted as I got my picc line done this afternoon - hadn't realised what that actually involved - it took an hour to get completely finished. Then had to drive to different hospital to get set up for tomorrow's chemo followed by a 2 hr wait to do school pick up then finally got to drive back home. DH is away so i have to run both kids around as well.

I'm strangely excited about tomorrow though - think it is such a big build up I just need to get started.

Gigondas Wed 19-Jun-13 20:02:35

Picc line is a faff but its in now kitkat. I think your attitude is good- chemo is zapping the cells so you can be well. I liked to sing hit me with your best shot (in my head) when it went in to will it to work.
Malt- deep breaths (count of 5 in thru nose, out thru mouth) as slows heart.

Thanks for the sympathy that not just me who is stiff after sports day- back is new thing tho from last week so hoping its nothing else sinister , sigh. It's certainly painful and limiting.

Apprentice is on tonight tho. I may have cancer but at least I am not a delusional loon in nude heels who needs a cement mixer as part of the make up routine.

I looked up the exercise programme but think they've got their wires crossed as they said it was called Look Good, Feel Better but that seems to be a make up workshop for women with cancer, which could be helpful anyway, tips on covering up signs of treatment, filling in missing eyebrows, tying scarves etc, info here if anyone is interested smile another lady recommended an exercise DVD from breast cancer care. The course is every Wednesday for seven weeks although I'll miss one session for chemo. Apparently they are introducing them all over the country at the moment smile

malt I tried to run away from my diagnosis appointment blush they were late so I decided we were going home! They won't expect you to remember everything so I'm sure they will follow up in a letter or give you some leaflets if necessary. Sending you lots of positive thoughts, hopefully it will be some comfort to have a plan for your treatment smile

Gigondas Wed 19-Jun-13 20:03:58

Copt - I fear that is what mini aiming at (she is actually asleep thank god). She was using a bean bag to try and do head stands in the sitting room earlier.

kitkat good PICC line is in. I was excited before treatment too, I think it's the relief of actually having something done rather than just the endless waiting!

trice Wed 19-Jun-13 20:21:36

I have been to the library today. I have been in Wodehouse land all afternoon, snorting with laughter, I love Bertie Wooster.

Then I got a lovely surprise in the post - an arty friend had made me a fabulous sparkling postcard to cheer me up.

A good day.

malteserzz Wed 19-Jun-13 20:46:30

Deep breaths smileTrying not to think about it now can't change anything

Ruby I had a look at that programme it does look really good and my local hospital does it, my work friend mentioned something similar I'll have to ask her if it was that one. Thanks

Gigs also looking forward to the apprentice and seeing what they're wearing this week

Trice glad you've had a good day smile
Has anyone heard from Emin hope she's ok

Kitkat you have a good attitude hope it goes well tomorrow do let us know x

KurriKurri Wed 19-Jun-13 21:11:38

malt - loads of luck for tomorrow, - will be thinking of you, and you also Kitkat - good luck with the chemo getting started is good - one step closer to getting better smile

Loads of love to everyone - sorry I have slightly lost track as have been busy this week, and DH away so that complicates transport etc. as he has the car.

Gigs - bugger about the back, - hope that is sorted soon. Mini Gigs is a little character grin

Ruby - glad you are feeling a bit perkier, and that your session went well, - its easy to get very housebound when you are feeling rough and it does bring you down. Hope you had something nice at harvester smile

I have bookclub tomorrow - another intricate battle with the bus system here in darkest Norfolk to get to it! Book was awful anyway - but usually everyone else likes the books I hate and vice versa.

Old lady dog has been a bit under the weather this week, - she is getting very doddery now sad

love to all - many apologies to everyone I've missed - am thinking of you all x

topsyturner Wed 19-Jun-13 22:03:35

Good luck for Malt and Kitkat tomorrow .
What times are your apts ?

I did a Look Good , Feel Better course . It was a make up lesson . Well worth going on just for the freebie bag you get given !
Loads of top brand make up (Chanel etc) and perfume .

Sauron sends gentle healing licks to Old Lady Dog
Hope she's feeling a bit better soon .

Gigs DD was one heck of a climber/escapologist as a toddler .
She used to climb out of her cot in the middle of the night and go downstairs .
We would often find her curled up asleep on a living room chair when we got up in the mornings !

Drinking gallons of peppermint tea today .
Think I've got cystitis hmm
Life keeps on giving doesn't it ?

hellymelly Wed 19-Jun-13 22:20:53

i was thinking of Copped Hall. Wasn't sure of the spelling. Spoke to my friend. She is very calm, steeling herself for bad news though. I am so hoping it won't be. The lumps are big,at least one is egg sized. She has been fobbed off by the GP several times and I feel really angry now that she could have had a scan nearly 3 months ago. According to the secretary it could take up to a fortnight for her results to come back- really hope it doesn't take that long.

BetsyBoop Wed 19-Jun-13 22:25:03

malt good luck for tomorrow, fingers crossed the words you hear are "a good margin" and "clear nodes"

kitkat good luck for tomorrow, I hope it all goes smoothly. I know what you mean, I just can't wait to get started now
You asked about my scan results a bit back - My BCN said she would ring me as soon as the results from my scans come through and has asked me to nag them to do the chest x-ray before my bone scan tomorrow or next Tuesday (when I have heart & liver scans) as well as they haven't sent an appt through for that yet.

Has anyone had chemo without a PICC line? I asked about that yesterday and the Dr said they only put one in if they have problems on the FEC-T regimen (apparently they would do one if it was just FEC as the E bit (I think he said) can damage veins, but that's not likely to happen with just three doses). He looked at my arms and said my veins look pretty good <proud emoticon> so they would just see how they go. Part of me is glad not to have a line in for the next few months, but then I don't want to bugger up my veins either hmm

Off to bed shortly, hopefully no more crazy dreams about feeling cancer spreading round my body - must remind myself that it is just my brain processing the fact I'm bricking it about the scans coming up and terrified they will show I have secondaries.

smee Wed 19-Jun-13 22:59:15

Sorry to be missing all day, but just wanted to hug Malt and say will be thinking of you tomorrow. Vibes a plenty coming from this way. smile

Missed masses - really can't keep up atm, but am thinking of you all. Be back soon. x smile

malteserzz Wed 19-Jun-13 23:02:30

Just wrote a very depressing post but have decided to save you all from it and have deleted grin
I'll just say night night sweet dreams to all x

malt don't feels there's anything you can't say if you want to but I've done the same as sometimes I think it makes it worse to type/say things out loud and I prefer to just ignore smile I hope you sleep well.

betsy I'm having eight cycles and no line in, had one week where I'd almost run out of veins but I'd been in hospital twice plus chemo plus blood tests plus blood transfusion so lots of holes! Apart from that no real problems. Cycle 6 the nurse had difficulty getting the cannula in and said my veins had hardened from chemo but not sure if she was just a bit clumsy as cycle 7 it went in first time smile I have very small veins so I've always been troublesome!

Goodnight all x

KurriKurri Wed 19-Jun-13 23:42:56

betsy I had 12 cycles of chemo with no line - the fec especially really buggered my veins, and gave me black tram lines up my arms and when I needed a lot of IV anti biotics the veins kept breaking because they were wrecked.
But I did have more than most, and I did have them closer together than most (I was on a drugs trial), and they recovered reasonably quickly once the chemo stopped.

But you may very well be fine and not have problems - and if things start getting difficult then you can ask for a line if you want one.

Hope you get a peaceful night's sleep tonight, and no strange dreams smile

Copthallresident Thu 20-Jun-13 01:03:41

Waves to everyone but must off to the Guardian Mad Men blog and get to bed (I'm that sad but, without spoilers for those who haven't dirtied themselves lining Murdoch's pocket, this Mad Men series has been like an LSD trip, when you come down you need to try and make sense of it all confused )

Oh and Apprentice grin I am so looking forward to Karen taking a certain person in hand. I lurve Karen. Another of my girl crushes.

However Betsy , I didn't have a line in. I felt very strongly that I wanted to feel normal between treatments and be able to go swimming in my good weeks, it is a relaxing bit of normality for me. It did burn out the nice juicy vein in the crook of my elbow but that was really the fault of my lovely caring oncy who likes to do it herself when she has time to do so, but she doesn't really, so she ended up going for the easy option, so it feels churlish to moan. When she was away and the wonky oncy took over the nurses were a lot better at using different veins and searching about a bit more so one vein didn't get overloaded. It does mean there can be a bit of mining for veins to take blood from now but even so I wouldn't have made a different decision. And I am far from convinced that taking blood from the nice big vein in my other arm, even if I have no lymph nodes, is going to cause disaster as I regularly do all the other stuff on the "do not" list, carry heavy weights, get scratched and stung, use an epilator etc. Life as a mother, and gardener, wouldn't be worth living otherwise, there are certain things, like chocolate and champagne.......

Plus I probably don't have the greatest veins since when I had an infection after the first cycle that took a few days to bring under control they ended up mining my ankles..(I was very unlucky and also turns out my white blood cells are and always have been pathetic)

Also I had FAC for 6 cycles (goodness kk 12? I thought high dose, serious blasting had been discredited about ten years before my treatment?) and the A was a very nasty burny drug that was bright red and came in a black bag with a skull and crossbones on it, the people who gave you chemo had to wear toxic hazard suits, sooo reassuring when they are about to pump it into you, and you really couldn't miss the slight air of panic as they handled it. It was the drug that really knocked the recurrence stats though. I notice that now they seem to use E and I wonder if it turned out to be just too evil.

jchocchip Thu 20-Jun-13 04:41:05

Sorry people I can't keep up. +vibes for results today malt
Think I might have taken a double dose of tamoxifen last night - that or its very hot. I was headachy yesterday and think a storm might be brewing...

BetsyBoop Thu 20-Jun-13 05:11:11

No weird dreams that goodness, but wide awake....hmm

Good luck again to malt and kitkat for today.

It's good to know others got on fine without a PICC line, and it will be good to get back to as normal as possible between cycles.

amberlight Thu 20-Jun-13 05:19:27

I had a portacath fitted under the skin rather than a picc line. Worked fine but it's more specialised and costly.

Hi all, hope everyone ok this morning. Fingers crossed for a good day all round.

My MacMillan nurse visited yesterday and is concerned my feet and ankles are still very swollen, I can't get shoes on now! She has asked the G.P. to call tomorrow. She also reduced the steroid dosage I'm on. I'm a bit worried she's talking about taking me into the hospice to have the drug regime overhauled.

After my first chemo I have to report it went very smoothly, I have 15 more to do at 1 per week. The lovely nurse went through all the side effects but apart from feeling a wee bit sick I've been ok.

I keep tentatively brushing/stroking my hair just in case it's starting to fall outblush Vanity, thy name is woman!!!

Gigondas Thu 20-Jun-13 06:53:43

Morning all- brew? Gentle hugs for malt- will be holding your hand. Post away if it helps.

Emin- the h word is scary but to give it a positive turn, they are often a load better at pain management then gp so don't think of it as sizing you up for a coffin (sorry to be blunt but I know I freaked when was mentioned to me).

How was mad men Copt?

Betsy- hope get all scans done and not too much waiting.

Jchoc- It is horrendously humid here so may not be the tamoxifen.

Topsy- how are you? sad For cystitis - got any cranberry juice?

Smee- how is the wound?

Radiotherapy starts today and got wound dressing change plus my dad coming over to give big gig her birthday present. My back is absolutely screwed - could hardly stand for shower last night.

I am worried its mets playing up ( good news is they are zapping them ) which made me fret last night. I did phone dr lovely who was nice as always and advised on pain relief. Just not much help when can barely walk to end of road ( know smee will sympathise as she had terrible back issues).

NedSchneebly Thu 20-Jun-13 07:06:29

Shooting through before work to wish malt all the luck in the world for appointment today. Thinking of you, lovely. This is where you take the next step on the journey, and knowledge is power. . . Then you know what's to come and you can see the way forward x x

kitkat1967 Thu 20-Jun-13 07:17:57

Morning all - fingers crossed for Malt today.

For those that have aske about a picc lines I only have one as my veins are small and the onc nurse (and anyone else who looked) have said that they will not last 6 cycles of FEC (or anything) so as i will need a line at some point she recommended getting in at the start to look after my veins for whatever the future brings hmm - BC unrelated I think!!

Apprentice wise - hopefully Karen (I'm a big fan too) will be going after Natalie next week.
I can't believe that for the last 2 weeks the candidates have been saying it is now so tough because of the exceptional calibre of those left in shock - do they really believe they are any good???

Gigondas Thu 20-Jun-13 07:36:17

Which one is Natalie? Do you mean Luisa?

Poisonous cow- I Know Jason was wet but she is a piece of work.i missed what Karen said at end when the women were bickering in the boardroom. Didn't miss Francesca horrible look when was dragged back in.

malteserzz Thu 20-Jun-13 07:41:21

Morning all thanks for your kind words.when I write what I'm worried about it looks so awful I can't post it
Earth I'm glad you're doing ok
Good luck to everyone else today
I'll be back later as I have till sodding 430 to wait!
My FB friends keep sharing a ' BC survivor ' picture of a lady who has had a double mx and lost her hair, no disrespect to her at all but I wish theyd stop it as I go on FB for a bit of light relief and chat and I don't want constant reminders

kitkat1967 Thu 20-Jun-13 07:44:50

Gigs - yes Luisa (duh).

apologies for being so absent -had a pretty horrid afternoon and couldn't bring myself to post...hello to hellymelly and v sorry to hear about your friend,sending her loads of good vibes, and special thoughts and love to malt for today,and for kitkat and gig
xxxxxx

Luisa is vile,wile,vile- also a huge fan of Karren Brady.

Gigondas Thu 20-Jun-13 08:22:41

Hugs for you mas- what is boy doing for end of exams? Also Copt aren't big Copt and dh off today?

notJenkins Thu 20-Jun-13 08:25:50

Hope it all goes ok today malt

malteserzz Thu 20-Jun-13 08:35:12

Hugs for Mas hope you're feeling a bit better today smile
Thanks NotJ
Enough about me !
I love Karen too though I do miss Margaret she was brilliant.

KurriKurri Thu 20-Jun-13 08:41:47

Morning all - off to catch the 'flexibus' in a minute (oh joy) -it is the only way to get into the local town but a 15 min journey takes at least three quarters of an hour because it calls int every village and housing estate and nook and cranny on the way. I am armed with an audiobook!

Copt - yes I had 12 - not all FEC though I hasten to add - I was on adrugs trial and I got'randomly assigned' to the many cycles of chemo (only the first half was accelerated + the injections to boost WBC) second half nearly did for me as i got multiple infections and septiceamia and was in hospital for a while! It was at that point the nurses told me that 'your WBC count was quite low even before you started chemo' - my oncy consultant came to see me in the hospital (a brief visit before he caught a plane to 'skiing in Switzerland') and said 'I'm sorry you are in this state, we have hit you far too hard and far too often' - thanks mate!! he also suggested that if my appetite was poor, I should try caviar and pink champagne grin - Anyhoo that's my chem saga, but it isn't all that relevant to others so I'm always a bit reluctant to describe it - as it wasn't your usual regime, so not to be taken as likely to happen to anyone else - don't panic anyone just about to start, - I think I was one of the guinea pigs that made them realise that the proposed regime I was on was not a good thing!<squeaks and runs round cage> grin

MAS - sorry yo had a shitty day yesterday - hope all is well now xx

Earth - try not to panic about the h word - they are pretty good at getting medications sorted from what I have heard, - they do loads of other stuff apart from the doom laden connotations. Friend of mine goes to one to have her lymphoedema sorted out. But thinking of you, and sending love xx

malt - good luck for today, try to keep busy until 4.30 ( bugger its late in the day, but this time tomorrow it will be out of the way)

Love to all, - I wish Louisa had gone - she is a right baggage - Jason was nice but woolly though so would never have made it to the end.

Back later if I survive the flexibus!

love to all.

Copthallresident Thu 20-Jun-13 08:57:08

gigs To paraphrase " Lord Sugar I would like to follow Luisa next week. I want to see for myself whether she is actually a strong woman manager or a tarty old cow that you will find impossible to work with" grin. I'd better not comment on Mad Men as thanks to Murdoch most people will be waiting for the Box Set and it was the next to last episode, so gearing up to big things happening, it is very annoying as used to have a sort of mini blog going with a few friends who I used to work/study with, we were Mad Women / Peggy grin, after each episode but they don't have Sky.

Sorry the achiness is worse but backs are the first to go when you do too much, especially after a period laid up. I have the annual bad back when I get back to gardening after winter after spending it laid up in hibernation.

malt good luck with this afternoon. There is no getting away from how anxiety inducing results appointments are, however you will have these now after every check up so you need a coping strategy in place. If you struggle so much to cope with dark thoughts then maybe you need to get your GP to get you some Counselling, so they can help you find ways. Remember the results you have already had really don't support such terrible thoughts. I cope by focusing on the fact it could have been so much worse and that actually I got off lightly even with my shitty prognosis, and also that there is nothing in life you can't laugh at, especially myself and my tendency to nearly pass out with nerves at results appointments . <repeat story alert> When I went for my pet scan six months after treatment finished the receptionist called me over after and asked me if I had a coil which was strange itself and provoked "Oh God, I have a curly tumour" thoughts but then I noticed she had in front of her the outline of a body riddled with tumours. Obviously my immediate thought was that it was me, I went into a cold sweat and black spots appeared before my eyes and I almost fell off my chair..... it was actually the old man they had just wheeled out! So it's all been uphill from there really grin

Copthallresident Thu 20-Jun-13 09:16:58

X posted

gigs Yes Big Copt and DH go off this evening. DH is up and annoyingly frisky. Little Copt just went off to the Courtauld for a taster day of which I am very jealous, it would be ridiculous to ditch my endless thesis and do yet another MA there wouldn't it? When the Gillian Anderson character in The Fall said in an aside I have multiple Masters I thought, maybe it wouldn't be so ridiculous, especially if I wear very sexy silk blouses www.guardian.co.uk/tv-and-radio/2013/jun/08/silk-shirt-fashion-the-fall Tomorrow more prosaically we are off to the Open Day at Leeds so I will be offline over the weekend as parents t'internet works via a man using flags to semaphore from the village green.....

kk I grew up in a village served only by one of those buses, which took an hour to get me home from school (from Girlington to that village jchoc) oh the tedium, still provokes a feeling of dread when I think about it, the 57.......

That chemo regime sounds very cruel. Wonky Oncy was a great one for jetting off on drug company jollies, we used to email each other in our bad weeks hissing and spitting that here we were puking and turning green just so he could become the drug companies favourite oncy and fly first class and drink champagne and the finest claret.............

Gigondas Thu 20-Jun-13 09:17:09

My best ever Margaret moment. I love her

HerNextDoorAt21 Thu 20-Jun-13 09:45:10

Hi ladies I am sitting here with topsy in a lovely cafe in a wee town down the road from us ..... We are discussing the "brave girl beating cancer" comments. topsy reminded me that she did actually beat cancer and I think we should either banish her from this group or make her wear pink from now on all the time and ALWAYS a pink fluffy glaring tutu ! My sister said I am "lovely and beat cancer" nothing yo do with the surgeons chopping my boob off !

malteserzz Thu 20-Jun-13 09:58:20

Gigs loved that clip she is just so withering !
Copt sometimes I think I'm not coping very well, maybe it will get easier as time passes? If I'm still here. We have had some funny moments, at cadburys world they had people dressed up in huge curly grey wigs and ds said mum if you get a wig you're not getting one like that !
Hnd oh yes tutu for topsy is a great idea, hope you have cake ?

kitkat1967 Thu 20-Jun-13 10:02:21

Great Margaret moment - I love her too.

jchocchip Thu 20-Jun-13 10:33:33

That dr beeching has a lot to answer for copt! My bus journey to secondary was horendous 3 buses if I missed the school special connection at acocks green ;). Sat on a bus mning on way to work...

Margaret is the best- I name changed one year to Margaret Mountford in her honour.
Feeling a bit more normal today -waiting for T to return (have bought him a croissant) and hope that he has remembered PE kit and has returned all his textbooks (they can't get their prom ticket or have their exams results posted unless they do and various forms are signed) He'll still be going in for singing lessons and music theory class but that's it really. A whole long summer stretches ahead.

malt don't be afraid to ask for extra help if you do think you need it. It's normal to have dark moments but if it's getting too difficult then better to nip it in the bud with counselling or drugs than for it to get worse. Although you may find you feel much better after the appointment today smile

I'm lounging in bed. It is ridiculously humid. I had a very wakeful night so resting now, naughty tummy. I am planning things I need for halls, I love planning grin

I hope everyone is having a lovely morning.

Copthallresident Thu 20-Jun-13 11:26:22

mas she used to be in the British Library quite often. I just itched to ask her if she wanted to go for coffee and cake.....

I was sorry to see you had such a bad time with your support group yesterday but your reaction was entirely understandable and you were quite right to get out of there. It is there to do just that, support you.

I forgot to say that wil be sending virtual hugs to * gigs* for the radio, and for the journey, which isn't the easiest if feeling sore.

BetsyBoop Thu 20-Jun-13 11:46:59

Just popped on while waiting on chest X-ray. (bone scan pt1 done, pt2 at 1430)

Sending big hugs to malt. Keep strong, waiting sucks, but you are nearly done with the waiting now. <hugs>

Kitkat thinking of you too, hope it's going smoothly.

Best wishes to gigs and malt and kitkat and betsy, busy day today, I hope all goes well for everyone smile x

BetsyBoop Thu 20-Jun-13 12:08:48

Sorry gigs I'd missed you were having radio today, hope all goes well.

Sitting in car eating my sarnies as nice comfy seat + peace & quiet! (tis raining here...)

topsyturner Thu 20-Jun-13 12:18:34

I can't wait for the apprentice ep when they dissect their lies cvs !
I love that one !

Hope all the apts are going/will go smoothly today .

Be back later , am in HNDs car smile

BetsyBoop Thu 20-Jun-13 12:37:40

Oh yes I love the cv episode too, and there are bound to be loads of tall stories to be dissected this year judging by the calibre of the candidates this year.

topsyturner Thu 20-Jun-13 14:31:49

Just had wholewheat toast with crunchy peanut butter and banana on it for lunch .
Was very nice .

Going to have a coffee and a custard slice after the school run .

Starting to think my life revolves around food ..... grin

It's very warm here today . And sunny . I should be outside enjoying it , but onc doesn't want me getting too much sun still .

I'm just waffling whilst I wait for you all to get back from your hospital apts with good news !
<stern look at malt>

Mas how are you today ?
I think you did the right thing at your support meeting . If its not helping you , get out of there !
You can always go back if you need to .

Gigs have the aches settled down any ? Hope you get some nice pain killers smile

Right , off to pick up DD from school .
Don't get up to any mischief while I'm gone grin

Gigondas Thu 20-Jun-13 16:37:14

Back from hospital tour-first radio done but could have done without going into room of doom for a chat rather than sitting outside. Back killing me so can't stand or walk for more than a minute or two . Emailed onc as cant carry on like this.

anyway resting on bed now - candles lit for malt and hoping betsy all done.

kitkat1967 Thu 20-Jun-13 16:51:11

Gigs - sorry you are still having a rough time - hopefully your onc will have some suggestions.

Malt - thinking of you - hopefully you didn't run away grin

Betsy - well done on getting through your tests - when will you go back for your results?

Well my first chemo is over and i survived the cold cap - I hope it is worth it as it turned 45 mins of chemo into a 4 hr appointment. I had to have extra anti-sickness meds (already!!) as there is a strong link with pregnancy sickness and as I vomitted my way though 2 (and labours) they think I will be likely to suffer. Anyhow with 3 different types of meds (plus back-up supositories shock I hope to manage - have sent DH out for ginger biscuits just in case!

kitkat glad first chemo went alright and hopefully the anti-sickness meds will do the trick smile I can recommend Lotus caramelised biscuits to help with nausea, I got them as I don't like ginger ones and they were very good.

gigs sad sounds horrible, I hope the onc gets back to you quickly. Good that first radio is over though.

that's horrid gig - hope onc gets back to you quickly.
No word yet from malt ? fingers very crossed
Well done kitkat
I am ok today- yesterday was a bit of a rubbish day-I've done some dusting today but no work - I did lie on my bed for a while this pm, bought another stripy top and can offer a big bag of cheesy wotsits for the trolley,oh and some iced buns.
Hospital tomorrow for chemo prescription and really hoping for head onc

BetsyBoop Thu 20-Jun-13 17:32:50

gigs - glad your radio is done, but sorry to hear your back is so painful sad I hope they can get it sorted asap.

kitkat glad your first chemo went okay. I had really bad m/s all the way through with both of mine too, so I'm already stocked up on gingery things and I've dug out my sea bands. The onc has also promised me extra anti-emetics too as` he said it is a common link

Hoping malt checks in soon, I've been thinking about her all afternoon

kitkat1967 Thu 20-Jun-13 18:06:54

Betsy - I didn't tell the onc as I didn't know the link then (and he didn't ask) so all I can have is the max doses of what he already wrote up - if it doesn't work then will have to try something else next time.

topsyturner Thu 20-Jun-13 18:45:52

Still no word from Malt ?
Hope everything's ok .

Gigs that sucks , big fat hairy ones !
Pain is the absolute pits .
Hope onc gives you the good stuff sharpish x

Shall come back in a bit to check if Malts been on .

BetsyBoop Thu 20-Jun-13 18:50:24

I keep checking for news from malt too topsy

malteserzz Thu 20-Jun-13 19:12:23

I'm back and gutted
They got clear margins which is good but some was in my node, so got to have chemo then a full clearance then radiotherapy then hormone treatment
Long haul
Think I'm in shock though I was expecting it
If it wasn't in my node it would be the same treatment apart from the op hmm
Waiting for a letter from the oncologist now which they said would be a couple of weeks more waiting

oh that's a bugger about the pesky node..am sorry to hear that, but be reassured that they'll be zapping the bugger with chemo and radio and tamox. Wine and chocolate are needed i think.

malteserzz Thu 20-Jun-13 19:25:12

Thanks Mas
I feel like I've let everyone down all my family and friends waiting for some good news I know that's ridiculous

BetsyBoop Thu 20-Jun-13 19:27:16

whoo for clear margins but bugger it's in your node. As MAS it will be getting smashed by all the blasting coming it's way. <hugs>

BetsyBoop Thu 20-Jun-13 19:28:46

malt you aren't letting anyone down, that's daft. Cancer is a git but it is most definitely NOT YOUR FAULT!

BetsyBoop Thu 20-Jun-13 19:30:41

<sneaks big bar of chocolate and a bottle of wine onto the trolley especially for malt>

crikey-you aren't letting everyone down - it's NOT YOUR FAULT ! Remember how well you did with the first op ? am sure you'll sail through the clearance and you will definitely feel better once your onc has sorted out your plan of action.

malteserzz Thu 20-Jun-13 19:34:15

Wine and chocolate accepted thankssmile
I know I'm being stupid

notJenkins Thu 20-Jun-13 19:42:25

You are not letting anyone down malt

I had some in one of my nodes too so snap.

At least you know the plan now.

coorong Thu 20-Jun-13 19:43:07

hey malt have been stalking you for your results - sorry to hear you have to have chemo - but very good news they got clear margins - what did they say about the type of tumor - must be ER positive - which by far is the best of all types to have. How long did they say for chemo? You might be back at school sooner than you think - don't write yourself off just yet!

am throwing poppy seed cup cakes on the trolley - apparently the poppy seed retain traces of morphine ... so go get high ladies!
gigs sorry to hear about your back - hope it gets sorted soon -
hello to everyone else - heres's hoping for a lovely long summer and very much looking forward to the start of the Tour De France.

topsyturner Thu 20-Jun-13 19:43:26

Definitely NOT your fault Malt
It's a bugger , but you can do this .
Try and concentrate on the good parts . Clear margins is brilliant news . You will get through this , I promise you x

Gigondas Thu 20-Jun-13 19:43:33

More wine and chocolate for malt- there is no right way to think about all this And i can certainly relate to the feeling of upsetting your family.

But you have better idea of plan now do focus on that.

Kitkat- sending you nice calm vibes. I don't feel sick now but took lovely nanny feeding me and huge long lie in bed to fix me.

Onc replied - if back pain is due to mets should be fixed by rads quite soon. If not, we look at pain relief/working out cause.

I may rewatch apprentice with dh.

Gigondas Thu 20-Jun-13 19:45:11

Does this mean there Is a cool girls corner in the bus stop where you can drink southern comfort with others who had nodes?

topsyturner Thu 20-Jun-13 19:47:35

Eek kitkat !
Suppositories ???
Think I'd rather be sick grin
total lie , I hate being sick

Gigs are you on daily rads ?
How long for .

topsyturner Thu 20-Jun-13 19:48:34

I had nodes !
Bagsy I get the best seat in the cool girls corner grin
I'll bring some Tia Maria ...

notJenkins Thu 20-Jun-13 19:54:09

I'll bring some rough cider.

Gigondas Thu 20-Jun-13 19:55:51

Every week day for another 9 days.

I am feeling sick myself so think you can have cool girls corner yourself.

kitkat1967 Thu 20-Jun-13 19:57:40

sorry about your news Malt - like everyone else says the chemo will blast it and the op will remove everything. I'm also guessing that you are ER+ due to you mentioning the hormone therapy - remember that they have this covered and know exactly how to manage it now and long-term.

I feel awful - headache which I think is from the cold cap and stress, and terrible nausea - anyone any idea how long that will last? I am hoping if I can sleep tonight I will at least get rid of the headache.
I have been told to drink loads but can't as it makes me feel sick sad

Topsy - I feel eek about the suppositories too - they've given me 2 boxes of them - hopefully it won't come to that.

malteserzz Thu 20-Jun-13 20:00:00

It was a lot to take in, he wanted to examine me I asked for the results first!
Yes he said it was positive and overall was grade 3, it was a 23mm lump. They were talking about making sure it was all gone so I could live to 80 which I think may be a bit optimistic but nice to hear
Hope everyone else is ok sorry to be all me me me x

malteserzz Thu 20-Jun-13 20:04:09

Kitkat and gigs sorry you both feel sick sad
Have told my best friend as nothing will happen for a few weeks we will go to see robbie and olly next week at wembley weve had the tickets for ages but I didn't know if I'd be able to go, sure nobody shares my musical tastes but I'm excited !

Popping to to check on you all. malt clear margins is a great result. Bugger about node but chemo will zap that before your clearance. You have nothing to feel guilty about. You didn't ask for this and you didn't cause it. Hope your letter comes through quickly.

mas glad you are feeling a bit better today. Hugs to you and well done to T getting through his exams. DS still has one more to go on Monday - Physics and then he's done.

gigs hope you get your pain meds sorted and that the rads don't leave you too drained.

Hugs to all those who need it. Miss catching up with you all.

kurri any news on your mum's house?

coorong Thu 20-Jun-13 20:10:32

Malt, you have a plan .... and yes, tonight it's you you you, but that's what happens

x-post with kitkat sorry you are feeling yuck. Remember to take all the anti-sickness things you get.

jchocchip Thu 20-Jun-13 20:39:23

Hugs to malt good news about the clear margins, pain that you have to have node clearance but living to 80 sounds a good plan!
Kitkat shock suppositories! 2 boxes! Hope the headache goes soon.
gigs let's hope the rads sorts the back pain. Rads is very tiring just having to travel every day so hope littlegigs let you have a gold night tonight.
mas hope your wobble is over and you have chosen more stripy tops smile
Down to Mum tomorrow.

coorong Thu 20-Jun-13 20:41:56

whoops malt that came out wrong - I meant - you need time to take in the plan - and everyone's batting for you --
can't join you at the node party - but will pass the ice cubes for the southern comfort - god that takes me back about 30 years .....boarding school staple, "comfort and coke"

amberlight Thu 20-Jun-13 20:54:05

Bringing some ginger biscuits and a pile of assorted crisps to the party trolley.

Malt, believe it or not it hardly changes your odds, having it in the nodes. V annoying, yes, since it's more treatment - but the more treatment with the modern stuff brings the odds back to very good. So, not the news you wanted, but still very good long term prospects. Have a cider. Or two.

Gigs, lots of rest for you. And a hug.

Kitkat, rather you than me with the Unusual AntiNausea Option!!

MAS, glad you are having a better day than yesterday.

Gracie, hurrah re end of exams in your household too. Here, DS has been to Uni for a whole day of statistics testing. It's tested all of us, I think...

malteserzz Thu 20-Jun-13 20:57:05

I'm getting all the sympathy texts now sometimes wish I'd not told anyone it's like the day I found out all over again
I know they mean well smile
Black cherry cider anyone ? Sounds wrong but tastes so right

amberlight Thu 20-Jun-13 21:04:46

yup, that'll do for me...<holds out glass>

malteserzz Thu 20-Jun-13 21:16:46

Amber I cross posted with you thanks for your kind words, you do all normalise things for me smile
Cider is lovely

kitkat1967 Thu 20-Jun-13 21:34:23

just popped back to say that i am feeling much better - able to each ginger cookies (posh version of ginger biscuits!!) and drink.
I think a lot of my problem was that the treatment started at 11 and finished at 3 and I was not able to eat during it - next time I will make sure I tuck into something substantial before I go in grin.

Malt - is your next appointment with the onc then?

smee Thu 20-Jun-13 21:37:35

Malt, I'll join the node party. Was in 4 out of 22 with me. It's a sod, but when I was despairing about it, a nurse friend told me in a way it was good as they'd definitely chuck everything at it. Hard to hear at the time, but am so glad now. smile

Still can't catch up. Been out all day and at DS's show tonight. Will try and do better tomorrow. Waving to all. Am drinking a toast to you in a bit, Malt. xx

Copthallresident Thu 20-Jun-13 21:49:12

Malt welcome to the stage 3 and nodes bench in the bus shelter, group hug, which will become extreme and maudlin after all the retro adolescent drinks. I can back up what Amber said, but from experience, four of us qualified for that bench 12 years ago, a couple had many more than one node involved, weren't ER+ and were Her 2 Neu. We are all still very much alive. I was horrified when I discovered a node was involved but it was a horror born of my preconceptions about Cancer not the reality. And now you have a plan, get the next six months or so over with and then life will go back to normal

gigs I hope the onc can help with your back, backs are painful things when they go wrong. I remember the delight of helping DH pee and poo in a pot when he literally couldn't move at all without shrieking in agony. (I am really not appreciated sufficiently) DH does suffer from man ailments but I have to concede the back was clearly bad even by womanly standards grin.

kitkat sorry you are in the very urggghhh phase. It will get better over the next few days. I practically survived on miso soup, but I guess it is a matter of personal taste. Beware, apart from miso soup, don't eat any foods you are fond of as your body may blame them for your current predicament, took years before I could eat dumplings or Asparagus. By the end of my treatment my body was flailing around so much for something to blame that I felt nauseous just driving past the hospital.

So DH and Big Copt are in the lounge ringing up with minute by minute accounts, and they are able to facetime from the bloody plane......

malteserzz Thu 20-Jun-13 21:56:45

Kitkat glad you are feeling a bit better will need all of your tips soon, yes next appointment is with the onc they did say to chase them up if I'd not heard in a few weeks which is not very reassuring !
Smee and copt thank you I do have the preconception that node involvement means im doomed but hopefully not
On the plus side he did say I've healed really well after my op and recommended rubbing bio oil into the scars

NedSchneebly Thu 20-Jun-13 22:05:39

malt sounds like you have a plan now. Bugger about the node but they'll throw everything at it, and any stray cells won't stand a chance. My tumour was 24mm and grade 3 too. Take it easy and enjoy the black cherry cider - is it Bulmers?! Very tasty, I agree. Hang in there, lovely, and give yourself time to get used to the idea of the next bit. Take one step at a time. And bollocks to the letting everyone down - be gentle and kind to yourself x x

Must head to bed - loads of love to everyone x x

BetsyBoop Thu 20-Jun-13 22:19:38

kitkat hope they don't give me suppositories shock glad you are feeling better though.

malt Under the NHS pledges they have to start treatment within 31 days (and have to report statistics on this) so hopefully they won't be hanging around - I think they often do the "under promise and over deliver" thing.

malteserzz Thu 20-Jun-13 22:26:24

31 days from today Betsy ? I need to get my hair cut, does everywhere offer the cold cap? At the moment I'm thinking I'd like to try it

Gah just lost my post.

Waves to all, hope you're having a good evening.

malt bummer about nodes but plan is good! smile another stage 3 here.

MAS is the Norwegian cream helping? It has really soothed the cracks between my fingers so I hope it works for you too smile

Whole lot of hair fell out earlier, I'm a bit annoyed it has lasted so long then decided to fall out right when the end is in sight! I'm emailing my bowel nurse about it tomorrow. Not sure how or where I can get a wig if needed. Thinking maybe one like this grin and for parties! grin

Goodnight all, sleep well!

BetsyBoop Thu 20-Jun-13 22:38:41

malt I think it's from today (the "decision to treat" day) - more info on pg 29 here

trice Thu 20-Jun-13 22:38:52

Glad that you have got your plan in place Malt. It is a pain about the nodes and clearance but you can handle it. Feel free to be pissed off though as I know it isn't the result you were hoping for.

Gig, sorry you are in pain. Hope you find a solution soon.

I have been to the cafe run by yr 6 at ds school. He was being a waiter. Because when I go in the sun my face becomes a mass of freckles everyone told me I was looking really well.

I had tickets to the Beverley Folk Festival this weekend. I usually take the kids and camp, we have a brilliant time. I do hope I will be well enough to go next year. My parents are coming over to stay for the weekend which will cheer me up a bit.

BetsyBoop Thu 20-Jun-13 22:39:59

PS - not sure if everywhere does the cold cap - it hasn't been mentioned to me yet (and I haven't asked as I don't fancy it anyway)

topsyturner Thu 20-Jun-13 22:40:44

Crikey Ruby , isn't cancer bad enough without having to wear a Bonnie Tyler wig too ? grin

Just had a lovely giggly time in the garden with DH and pig/dog .
My sister sent a big box of her sins clothes over for my DS . And when DH took the huge cardboard box they came in out to the bin , pig/dog stole it off him .
Cue DH chasing pig/dog and playing tug of war .
Priceless grin

Hope everyone gets a good nights sleep .
I'm having a cheeky vimto to celebrate Malts clear margins !

Night All x

topsyturner Thu 20-Jun-13 22:42:34

My hospital didn't offer the cold cap , but my last chemo was a while ago .

malteserzz Thu 20-Jun-13 23:05:00

I always thought id end up looking like bonnie Tyler in a few years ! Ruby that is a pain about your hair though hopefully it will grow back quickly
Trice I am a bit pissed off ! Shame about the festival, something to look forward to next year though
Cheers topsy !
Thanks Betsy for the link
Ned yes bulmers it's very nice
Night all and thank you all from the bottom of my heart for being there tonight xx

malteserzz Fri 21-Jun-13 07:17:27

Morning all
Meant to be ds sports day today but weather is looking rubbish so might be cancelled, hopefully!
Hope everyone slept ok? Me not so much
I have some questions but I'll save them for later as its early
What's for breakfast ?

I've had yogurt with sliced strawberries,grapes and banana (saintly emoticon)
I can't join node corner but do I get a special dispensation for mets ? mind you,can't be doing with Southern Comfort..
Hope rads are tolerable today gig and that the pain isn't so awful.
ruby the Neutrogena comfort balm is great - much nicer than Aveeno or horrid Diprobase stuff. Thanks v much for recommending.

BetsyBoop Fri 21-Jun-13 08:16:49

malt just seen this in the news. If you wanted to avoid another op if might be worth asking if this is an option?
How are you feeling today?

gigs I hope rads go well today and bring some pain relief.

kitkat hope you aren't feeling too rough today. I think I'll be going back to my "this too will pass" mantra when my time comes.

Waves hello to everyone else

trice Fri 21-Jun-13 08:21:56

I had many, many nasty nodes. And I still have.

I have a good book to read today. I am working my way through rereading Dorothy L Sayers, Georgette Hever, Niago Marsh, Agatha Christie etc as recommended by book threads on here. They are so comforting to read and cancer free. As a plus my current chemo brain has largely forgotten who done it!

malteserzz Fri 21-Jun-13 08:28:08

Betsy thank you I had seen that, my surgeon said it was better to take them out as then you could check them, I guess with radiotherapy how would you know if the nodes were clear or not afterwards ? But will mention it again after chemo

Mas sounds a very virtuous breakfast well done rice crispies here !

Sports day cancelled we had terrible rain last night it was like a film, coming out of hospital after bad news and walking through the car park in my summer clothes getting soaked and not caring then crying in the steamed up car ! We won't forget that in a hurry grin

malteserzz Fri 21-Jun-13 08:37:39

Morning trice what do you mean you still have, don't they take them all out ? ( clueless here )
Books sound good I hope to get back into reading

Copthallresident Fri 21-Jun-13 08:45:44

betsy that was exactly how I coped, with that mantra, and viewing it all as something to get over with. Cancer is an inconvenience not a lifestyle.

Trice that list made me nostalgic smile Most were read under the covers with a torch at 2am. It was actually probably that, rather than dyslexia that made me a daydream at school grin what a great idea to reread. I did revisit Jean Plaidy to see if she could do the same job of engaging DD with the people in History as she did for me but discovered her writing was actually so crap it was annoying grin

gigs hope you had a better night and have the back pain under control.

malt ask away.

Off oop north in a couple of hours. It will be nice to get away from the smoke as my Dad calls it.

malteserzz Fri 21-Jun-13 08:58:47

Ok questions
Should I get my hair cut now or wait till I get my appointment and find out if they do the cold cap here?
What do I need to do before chemo, I'm quite fat is it best to try and lose some weight ?
Do I need to go to the dentist ? Not been in at least 10 years, I know I know !
Can you drink on chemo ? Very important question

Sometimesiwonder Fri 21-Jun-13 09:37:05

Hi Malt

Hugs from me.

Drinking - definitely

Dentist - definitely

Hair cut - personal choice, but I got mine done when it started to fall (usually 2 weeks after first dose IIRC)

Weight loss - don't fret on that one, it's a hassle you don't need

xx

Copthallresident Fri 21-Jun-13 09:39:16

malt I didn't get my shoulder length hair cut, they do say that shorter hair doesn't fall out as quickly because it weighs less but you still have to brush it so I don't really get that. I suppose when it did come out the mad witch look with a few wisps was a bit dispiriting before I shaved it all off. It would have given me a chance to experiment with a short look but it would also have been an extra thing Cancer had made me do, and I was very resistant to that, and I don't love the hairdressers . So I think it is a matter of personal preference

How people react to chemo varies on the weight front too, some put it on with the steroids etc. I lost two stone and I didn't have two stone to lose and ended up with the full emaciated look with jutting hip and collar bones. In fact I am fat now and should be more proactive about losing weight now but a bit of me clings to having some reserves <excuse>

Otherwise stock up on good mindless DVDs and books , get your support networks in place for school runs, getting kids meals cooked (I really couldn't face food at all for a couple of days a month and when my friend was having chemo doing a family meal and soup (for her, she could only eat pea and lettuce soup) run was something I gladly did that made a real difference.

I have disgustingly yellow but strong teeth so it really didn't affect them but I would have thought it might be an idea if you haven't been for ten years to make sure you haven't any potential for abscesses when you immunity is low. My nails were shocking though.

Friends and I had bloody good dancing on the tables throwing our wigs and prosthesis across the room piss ups in our good week. I suppose our Sunday School teacher like Oncy would have been appalled, but I feel certain it is why we are all still here grin