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Original poster

Tamoxigang New Year, New Thread, *46*

990 replies

BetsyBoop · 16/01/2014 06:42

Hands round a Brew for everyone.

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Original poster
BetsyBoop · 21/01/2014 18:03

paul stick around while you wait, we all understand how awful the waiting is. I'm glad your GP took it seriously though, these things are better checked just to be sure. Fingers crossed it isn't what you are worrying it is though

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kitkat1967 · 21/01/2014 18:44

Really - you are being amazing. I didn't realise that you weren't sleeping - you may be past the worst of this cycle but seriously consider sleeping pills for next time. I finally caved for about my last 4 weeks after I confessed to the chemo nurse that i was only sleeping about 3 hours a night due to the steroids and to be honest they were a life saver.

Wine - weekly Paclitaxel is different to the 3 weekly chemos in that the Side effects are cummulative - what that means is that you don't get a bad week, an OK week and then a good week. What happens is that for the first 3 to 5 weeks you get virtually no SEs as you are only getting 1/3 of a dose each time. But becasue it never gets time to leave your system the SEs then build up and the last few weeks are pretty tough - but I still don't think you get the massive aches that happen on the 3 weekly cycle. The worst for me was that for the last month or so once my taste buds had gone they didn't come back at all!!
All in all it suited me as there aren't really any completely 'wipped out' days so i was able to carry on getting the kids to school etc. without help (DH not around much in the week). On the other hand it is rather time consuming as you have 1 day or chemo each week plus a day for bloods. There is also little chance of low blood counts due to the low dose. You also get a very predictable pattern so you know when your good and bad days will be.
I only had 9 weeks and my onc was pretty confident that I would avoid any long term peripheral neuropathy because of that so I'm guessing your last 3 weeks will be harder - but definitely doable Smile.

Can't remember who asked but it both Betsy and I are taking vitamin B12/B complex - I wonder if it would have been useful to take during chemo but it wasn't on my radar then.

Wren48 · 21/01/2014 19:26

Paul,just because you've been referred on still doesn't mean it's anything. Any decent GP will err on the side of caution. Really good luck with the next step.

Wine, I had a mx plus DIEP reconstruction plus ANC 4 weeks ago. Only now beginning to feel like myself - it is quite a big thing. I knew I didn't want implants but was quite sympathetic to a straight mx. I wish someone had really talked through the options with me; the plastics team were all for recon. I will have a very nice, natural new breast once healed, but I'm a bit upset by my tummy still, if I'm honest, but I can see that it will bother me less and less as it fades and it is beautifully flat! My main anxiety is a delay to my chemo due to a slow healing wound. Even so, chemo is likely to be about 6 weeks after the op. Not an issue for you as you've done it the other way round.

Wren48 · 21/01/2014 19:39

mummywheel, I dropped work and haven't been back. Couldn't do what I had been doing; just too much stress. Don't feel bad. If you have a wait, just focus on looking after yourself and getting stronger.

And on the subject of work, I have continued to be in awe of how much you are doing, really. It seems you badly don't want to let others down, but don't forget to care for yourself. The idea of talking to your BCN sounds really good. I wish mine was more available - impressive woman, miles too busy.

malt I have new chemo date for 6 February. Actually I am in doctor hating mood this evening, as yet again the appointments have been messed up and, instead of being of being able to go on the Monday, as I had been assured would be fine, I have to start on Thursday as they're full again. It may not seem much, but every single key treatment date has been terrible for me. Because they are so busy I end up having to take what they offer and I just feel like a NON-PERSON.

Right. Rant over. Sorry. And I just made my mum cry. Not my most glorious moment.

Wren48 · 21/01/2014 19:40

Blimey what a whingey set of posts from me. Will brace up, I promise.

GoodnessKnows · 21/01/2014 20:51

Glad you're doing ok on lower dose and sleeping a bit better.
Hello everyone ekes.
Xx

harrietv · 21/01/2014 20:56

thanks for all your replies guys. do you mind me keeping on asking questions?

I think i've decided on mx with implant. Is this always a 2 stage process with expander? Dr says he'll do an immediate reconstruction but we didnt'n discuss beyond that.

paul don't panic yet. i hope it turns out to be nothing

malteserzz · 21/01/2014 21:13

Wren no need to man up it's crap when they mess you around, I've had my fair share too. We all understand so feel free to vent on here anytime
Have you made up with your mum ?

malteserzz · 21/01/2014 21:19

Daft question from me ! Does it matter what I wear for my rads planning tomorrow and will I have to take my wig off ?

Original poster
BetsyBoop · 21/01/2014 21:21

harriet - they don't normally put an implant in if there is any likelihood of you needing rads as the implant can be affected by the rads. Ask away, nothing is out of bounds on here :)

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Original poster
BetsyBoop · 21/01/2014 21:24

malt they will want you naked from the waist up and shoes off on the bed (so no holey socks and a dress is not the best plan Grin) Yes you should be able to keep your wig on, but you do have to wiggle about a bit so there is a chance it might move, so it's up to you if you are comfortable doing a quick straighten if necessary!

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malteserzz · 21/01/2014 21:36

Thanks Betsy Smile

Tiny100 · 21/01/2014 21:42

Oh Wren, to be messed around is the last thing you need at the moment. How are you healing with your new high-tech dressing?

Harriet - Can I ask, how did you come to your decision? I need some decisions regarding surgery - my Consultant is really pushing for breast conserving surgery.

Appeal to everyone - I have extremely sore chapped lips, with little cuts in the corner of my mouth. It sounds so trivial, but it is making me miserable. I am continuously applying an aloe vera chap stick, did try my son's DoubleBase, but that didn't taste nice! Is there a magic potion out there, that can clear this up straight way?

Original poster
BetsyBoop · 21/01/2014 21:46

and I forgot to say good luck for tomorrow malt. You will be fine my lovely, I promise, the scariest thing is the cold metal ruler! I've come to the conclusion that rads is all just a bit of a test of your endurance of tedium. (only two more to go for me, hurrah!)

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Original poster
BetsyBoop · 21/01/2014 21:50

tiny - I didn't particularly suffered with my lips on chemo, but I do generally have to look after my lips` really carefully or they get chapped in the winter. I use Blistex daily Lip Conditioner - they also do relief cream for sore lips.

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Wren48 · 21/01/2014 21:52

Thanks for the kind words. Really helpful. As to my mum, I asked my sister to call her as I thought I wasn't in the best place to help. I'll call her tomorrow and ask her down for Sunday.

Tiny, I hope hope hope my high tech dressings are working; finally there are signs of healing but, having made a fuss about chemo dates, I guess there's a chance it'll have to shift again (fingers and everything else crossed).

Tiny, chapped lips are miserable. Vaseline? But this might be where a pharmacist can be really helpful.

GoodnessKnows · 21/01/2014 22:44

Tiny, I only find Carmex to be helpful. Blister good to get them back into shape thigh (but bit stingy ). Carmex good as powerful keep-in-shaper after that.

reallyreallyworried · 22/01/2014 03:05

Just wanted to wish malt good luck for today! Hope it goes well.

I'm still getting bone pain Sad seriously fed up now! Another night with very little sleep! Think I'm almost ready to chop my head and legs off! Would that solve the problem!?

Hope everyone else had a better night xxxx

GoodnessKnows · 22/01/2014 03:31

Really, I'm so sad to hear you're suffering like this. I have no words but hugs.

Original poster
BetsyBoop · 22/01/2014 05:46

really the bone pain is miserable. Remember to ask for stronger painkillers for next time. (they can made you a bit dopey, but the advantage is you sleep like the proverbial log!)

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reallyreallyworried · 22/01/2014 07:04

Thanks goodness and Betsy I managed to sleep for a whole 2 hrs Smile uninterrupted!! This morning the pain feels a little easier, so fingers crossed I am through the worse! I will definitely be asking for painkillers for next time! Can't believe I've got to go through this twice more Sad

Then I thought I had sorted my arm a bit! I left the stocking off through the day so my sore bit could be open to the air! All was looking a bit better. But I had to put the stocking on last night, as obviously moving around in sleep!! Well if I slept I couldn't risk pulling line out/dressing off! But it meant when I removed the stocking this morning, it had stuck to the sore bit and the skin came away when I removed the stocking Sad OUCH!!!!!!!!!!!!!!!! so back to square one!

Oh how I'm not looking forward to dressing change on Friday Sad

malteserzz · 22/01/2014 07:21

Thanks really will be glad when it's over, have to wait till 240 I hate afternoon appointments !
Sorry about your bone pain and arm hope you manage ok today Smile

kitkat1967 · 22/01/2014 07:29

I came on to say good luck to Malt but I see you have a long wait until your appointment.

really sorry to hear you had another rough night and your arm must be really sore if the tubi grip is sticking to it - ouch. I didn't nead to wear mine at all if I didn't want to but it sounds like your dressing does not cover everything like mine did. I am pleased to hear that you will be asking for more meds next - make sure you do!!!

Wren48 · 22/01/2014 08:20

Good luck for later, Malt.

Really, so sorry to hear about miserable bone ache and sore arm. Not sleeping is the pits as you are left so vulnerable. I hope you have a better day/ night.

Gigondas · 22/01/2014 08:25

Much better thanks betsey- I suspect I may need more as ime once bloods dip on chemo hard to get back up without help.

Really- so sorry it's still tough. Can you ring Bcn and get prescription for pain relief and/or sleep tabs? You shouldn't suffer like this ESP your arm on top. I am no picc fan as had loads of trouble with mine.

Malt- grr you have to wait but the session is quite helpful as give you an idea of how mechanical rads are. That way you will be prepared for the hauling about when they start.

Goodness- it's totally ok to be self absorbed . we all know what if feels like. Lots of luck today - are you at Wellington?

Lazy day as only got big gigs parents evening tonight. Doubtless will be back asking malt and anyone with older kids for reassurance. I get massively fretful and pfb with big gig.