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Tamoxigang - 41 and counting

994 replies

KurriKurri · 20/08/2013 09:55

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

OP posts:
topsyturner · 25/08/2013 22:59

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

topsyturner · 25/08/2013 23:01

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

malteserzz · 25/08/2013 23:13

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

GoodbyeRubyTuesday · 25/08/2013 23:48

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

KurriKurri · 25/08/2013 23:52

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

OP posts:
Gigondas · 26/08/2013 03:46

Hugs for ruby - I missed you.

Jchoc glad foot improving and party sounds nice.

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

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

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

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

Brew For me before I head back to bed.

Gigondas · 26/08/2013 03:46

Have not HSBC - bloody predictive text.

amberlight · 26/08/2013 04:30

Hope you get some sleep.

Gigondas · 26/08/2013 05:19

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

wouldratherbeonthebeach · 26/08/2013 07:23

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

malteserzz · 26/08/2013 08:09

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

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

malteserzz · 26/08/2013 08:20

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

BetsyBoop · 26/08/2013 09:47

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

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

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

Any qus just ask, nothing is off limits here :)

gigs and amber I hope you went back to sleep?

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

malteserzz · 26/08/2013 10:26

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

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

KurriKurri · 26/08/2013 10:59

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

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

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

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

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

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

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

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

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

OP posts:
KurriKurri · 26/08/2013 11:01

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

OP posts:
GoodbyeRubyTuesday · 26/08/2013 11:26

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

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

jchocchip · 26/08/2013 11:31

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

BetsyBoop · 26/08/2013 11:33

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

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

Have fun car shopping.

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

jchocchip · 26/08/2013 12:00

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

malteserzz · 26/08/2013 12:09

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

wouldratherbeonthebeach · 26/08/2013 12:34

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

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

KurriKurri · 26/08/2013 12:55

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

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

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

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

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

OP posts:
topsyturner · 26/08/2013 13:53

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

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

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

malteserzz · 26/08/2013 16:53

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

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

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