Tamoxigang - 41 and counting

[KurriKurri]

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

[Gigondas]

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

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

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

[malteserzz]

That is a good idea gigs

[kitkat1967]

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

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

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

Does mean I can enjoy the bank holiday weekend .

[malteserzz]

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

[MaryAnnSingleton]

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

[reallyreallyworried]

Hi,

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

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

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

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

Xx

[kitkat1967]

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

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

Just got confirmation of surgeon appt for Tues.

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

[KurriKurri]

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

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

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

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

jchoc - lots of good vibes for your mammo xx

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

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

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

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

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

[kitkat1967]

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

[KurriKurri]

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

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

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

[kitkat1967]

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

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

[malteserzz]

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

[KurriKurri]

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

[Gigondas]

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

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

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

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

[reallyreallyworried]

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

[kitkat1967]

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

thanks.

[MaryAnnSingleton]

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

[malteserzz]

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

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

[KurriKurri]

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

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

[KurriKurri]

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

[MaryAnnSingleton]

oh that's pesky kk

[kitkat1967]

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

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

[PictureThis]

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

[notJenkins]

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

[malteserzz]

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

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

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