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38th tamoxifen - waiting for summer in the bus shelter

987 replies

Gigondas · 15/06/2013 12:01

New thread.

OP posts:
smee · 24/06/2013 16:12

Yay for Betsy. Smile Smile

Malt, you're right 'Look Good, Feel Better'. I went to one, but it wasn't really me as I don't wear make-up. Not at all sure why I went, but the women were lovely and my friends appreciated all the freebies. Grin

Had quite forgotten the chemo facial, Copt. My skin was amazing. Grin

Waving to Amber. What's your current guru-like-wisdom on Vit D3? I just mean in terms of dose. I was taking a high dose and felt amazing, but seems to be conflicting advice on the net as to what's the best dose to settle at.

malteserzz · 24/06/2013 16:13

Copt I think it's great the way everyone answers questions and gives advice I hope I can do that in the future
I've had lots of messages from friends offering to put me in touch with people they know who have had BC which is nice to know that people are there I'd you need them. I have you lot so I'm lucky Smile

malteserzz · 24/06/2013 16:17

Phone rang and I x posted with everyone then !

MaryAnnSingleton · 24/06/2013 16:30

great news betsy !! fingers crossed for tomorrow Smile
There's a Macmillan pampering thingy at Southampton in the oncology unit where I went for rads, but didn't go and look. In Basingstoke there's a local charity which does free sessions for stuff like massage/hair/aromatherapy etc and I believe the hospice does such things too. Am rubbish at having these things though as I don't really want to be touched - I feel too inhibited.

Lilymaid · 24/06/2013 17:11

Thanks for all the helpful suggestions - definitely up for any pampering treats going! At the moment I'm having treatment privately as I'm on the work BUPA scheme, so I hope that treats are still available for those of us who aren't using the NHS for all treatment.
Amber - I am having T-FEC - so other way round but 3 doses of T followed by 3 involving FEC. But I must be having the port thingy you mentioned ...
Strange to be so ignorant at the moment. My job is in provision of information - but just not this sort of information. One day I'll be giving others the advice on this rather than just taking!

Copthallresident · 24/06/2013 17:22

Lily I was treated privately too but at a specialist Cancer Hospital and it was all freely available, and I had massages with the complementary therapists in a private Hospital that my Consultant was attached to, too,

amberlight · 24/06/2013 17:37

Smee, no new research on cancer and Vit D dosage. Some indications of better survival in those with good Vit D levels, but it's anyone's guess what the best dose is. Nothing too extreme, they seem to say. I take it every day (10 ug) and really notice when I haven't.

Lily, ooo, other way round from me with the T then FEC.

Port thingy is an operation. Took about an hour under sedation/local anaesthetic. One cut on neckline of about half inch long, one cut about 2 ins long on chest near where a bra strap would be. They then wiggle it into place and away you go. The needle for chemo then goes into the unit through the skin, which will be a bit ow - same as any other injection - but it's nifty.

I took ginger supplements for three days before each chemo dose, and it seemed to work for stopping the worst of nausea. Sipping ginger beer afterwards any time you feel nauseous might work too. And I used those wrist bands - seabands - which also helped.

T (assuming it's Docetaxel) That's one straightforward potion. They'll put in an antisickness thing and possibly a steroid thing first - then drip the rest in for a good long while. You'll have saline to flush the line at the start and end too. But all you have to do is let them get on with it whilst you read a magazine/whatever. The drip thingy is normally on wheels so you can take it for a walk to the loo if you need to. Top tip - ask for frozen gloves, and take in some bags of frozen veg in a coolbag, wrapped in a few carrier bags. Use these to cool your toes, whilst the frozen mitts cool your hands. Drink iced water whilst you're having the chemo as well. Take your own of both in case there's nothing like that there. That way not as much chemo gets to your fingers and toes nor your mouth - and you may find you don't have nail problems or nerve problems or mouth ulcer problems.

If you feel sick, say. They have nine sorts of antisickness stuff. Never ever suffer with being sick. Get them to fix it. I wasn't very nauseous with the Docetaxel. I found FEC worse for that.

Rest and see how you go. I found it was fine whilst I was taking steroid tablets, but a s*d when I stopped them, so I negotiated with my Onc to tail off the dose a bit rather than stop it straight away each cycle. Day 5-6 was Dodgy Tum Day for me with rotten gastric ow, but I learned to take anything I could take for it. You might not find you react the same way.

That's a start, anyway. I worked all the way through mine, which shows that some of us are stark raving mad able to carry on.

malteserzz · 24/06/2013 17:54

Lily I'm more ignorant than you in sure !
Why do you have the port thingy then I thought everything went in the back of your hand like when you have a GA ?
Also what are the steroids for and does everyone have them?

Ive just received a lovely get well soon card from my class HmmHmm I just disappeared apparently they've been asking where I am, I could go and see them before I start chemo but I think I'd just cry

Gigondas · 24/06/2013 18:01

Port thingy or picc line (which goes in your arm) is to make it easier to do chemo and stop your veins getting too damaged which they can do with the chemicals.

Steroids are to prevent allergic reaction to chemo.

Had nap and eating dinner in bed. Thanks for all nice thoughts-pain is ok , it's more stiff/ sore so I just can't walk or bend too much . Will discuss what next with onc.

Am sure you are right that nausea but of everything - being bone tired never helps ( mini gig thanks Grin).

Hoping mega early night As dh out might help.

OP posts:
BetsyBoop · 24/06/2013 18:12

Well hospital finally phoned with a chemo start date - 11am Thursday gulp

will be back later once kids are bathed and in bed.

Gigondas · 24/06/2013 18:13

Betsy- you will get through this .

OP posts:
malteserzz · 24/06/2013 18:15

Hugs Betsy
At least you know when it is now and you can mentally get yourself ready and sort out the practicalities x

malteserzz · 24/06/2013 18:17

Gigs have a relaxing evening and hope you get some sleep must be hard with little ones, lovely as they are Smile

snailsontour · 24/06/2013 18:24

Woo boo Betsy that's fab news!

Smee, I take 5000iu's of VitD3.

Lily, trust you to be different and have the T first! I had oral steroids the day before each infusion as well as on the day and the day after.

I've also been thinking about getting my colours done Ruby, so I'll be watching how you get on.

And defo get your names down or the LGFB session - the goody bag is a lovely treat.

kitkat1967 · 24/06/2013 18:33

well done Betsy - some good news in for you on your test results.

You are exactly 1 week behind me then - I have my first chemo 11am last Thursday.

Unlike you and Lily I am 'only' having FEC but am having 6 cycles at 3 weekly intervals. Although onc is going to review this after a couple of cycles and may change his plans if there is no shrinkage.

I think you are on the same course as me aren't you - chemo, op then rads????

I'm off to get a wig tomorrow Grin - think I should have done it before I had my hair cut short but am taking a mate with me so hopefully I will not choose anything too looney.

Malt - one thing I do know is that you can have your chemo through the back of your hand as long as your veins are OK. I have my picc line in but it seems that most people manage OK without one.

snailsontour · 24/06/2013 18:45

Malt, I think most peeps have their infusions through a cannula in their hand/arm, unless they have issues with their veins. The E (Epirubicin) bit of FEC is notorious for buggering up your veins. FEC infusions are usually delivered slowly by syringe into the cannula - as opposed to by drip/pump.

One bit of advice for you neoadjuant girls, especially if you are having ANC, is to get them to use the what will be your 'bad' arm whilst you still have two good arms.

BetsyBoop · 24/06/2013 18:48

Well kids bathed and watching tv, so I can finally catch up

Gigs - hope you feel better after an extra long sleep tonight.

malt that is really sweet of your class - but it's so hard to know how to handle things with the kids at school isn't it. We had this term's IEP review meeting with my 1-2-1's mum this morning - so I told her what's going on - it was just easier if she knows, but now we need to decide what to tell my 1-2-1, I can't just disappear after Wednesday...he doesn't handle change well...

ruby having your colours done sounds fab :)

EMIN and MAS how are you doing today?

topsy my hairdresser is fab and really understands my strange hair - but don't think you are anywhere near me?

I had loads of people saying today that they love my new haircut (not all of them know why I've gone short, and will soon be going shorter Grin )

BetsyBoop · 24/06/2013 19:05

kitkat - yep same plan as you, chemo, op, rads. How long did your chemo take minus cold cap? I'm just trying to get some idea how long I'll be there and if I'm likely to be home for school run.

kitkat1967 · 24/06/2013 19:19

Betsy - my FEC - total of 6 syringes took 45 mins - plus I guess you need to add some prep time and a bit of time before rushing off.
So if you are in for 11am you should be fine.
How old are you DCs?

GoodbyeRubyTuesday · 24/06/2013 19:38

Hi again,

Popped out to Sainsburys earlier and saw some lovely PJs so I now have three new pairs :) well, two and a half as liked the trousers of one set but not the top.

Dinner tonight was a new recipe, Nigella's macaroni cheese made with evaporated milk, it was delicious.

The oncology nurse phoned about an hour ago, she reckons my hair should last but said she can refer me to the wig lady if I'd like and I can get a wig anyway just in case, I'm not really sure what to do now! :)

gigs I hope they can sort the achiness soon and that you get a better night's sleep tonight!

Betsy good the new haircut suits you :) what's it like?

malteserzz · 24/06/2013 21:54

Ruby I dont know what to advise about the wig, is it worth getting one just in case ? I bought a pair of flowery pjs from sainsburys last week dh was worried about losing me in the flowery duvet !
Hope everyone's ok ?

trice · 24/06/2013 22:28

I have one more dose and then will have finished my second cycle. I am feeling a lot better, but there is a long way to go. I am trying to stay positive but it is bloody hard work. I am looking forward to eating without nausea for the next few days.

Hope you are all on the mend.

snailsontour · 24/06/2013 22:30

Betsy, my chemo unit invariably ran late - plus you start with having your bloods done so the whole process takes forever...

Sorry, but I don't remember if you are private - that may be more timely.

BetsyBoop · 24/06/2013 23:45

Snails not private no.

However I'm told that the onc day unit is run with military precision by someone who finished chemo there a couple of months ago, so we'll have to see! I'm expecting 2-3hrs tbh. (already had bloods done for this cycle and onc will see me two days before next cycle and will have bloods done then)

Even so will have one of my friends on standby for school pick up just in case as DH is coming with me for the first one.

BetsyBoop · 24/06/2013 23:48

Kitkat DD is 7 and DS 5

Ruby very short at the back, bit more length on top and sides but still short!

Trice when do you get the last dose? Hope the nausea goes soon

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