Tamoxigang - 41 and counting

[KurriKurri]

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

ruby am in awe that you camped ! Pesky periods though nice to know that things are working
Have emailed bcn to ask her about seeing consultant.

Good afternoon from me.

Been school shoe / trainers / football boots shopping today and managed to buy 1 pair of school shoes , 1 pair of bright purple desert boots for myself and an indulgent lunch. Better get out again later to finish the job properly. I hate shoe shopping for the children.

I am off out for dinner with a good friend later so a few vodkas will get me over the shopping horror.

Who is doing the blue assessment gigs ? I have heard that most of the assessment is done as they watch you out of the window walking across the car park I am sure you will have no problems and variable conditions are very commonplace.

My meds change tomorrow in preparation for my scan and I can feel myself being sucked into cancerland again. I am determine to enjoy my leave before I start feeling really rough.

It's being done at local assessment centre. I am going by taxi with stick etc which is just following advice of drs .
I know my condition is Variable so I don't feel that much of a fraud but when you read the form , some of conditions are ultra tight. I have also been warned by my cousin (who did the assessment years ago) that some of questions can be quite upsetting.

But have prepared for this by booking lunch in local Jamie's after . this is also as thank you to the wonder nannies who have been staying over to help as I can't lift mini . We are going to finish last bits of shopping for big gig school and i may do some shopping in Lakeland while mr gig is away.

think your enjoy it before meds change is good Nj- have you got any treats like books, DVDs etc planned for your rough time? I am hoping tho it may not be as bad as you fear.

About supermarket delivery kurri-that drives me nuts. I must admit I end up using ocado more often tho it's more expensive as site works. I can never get Sainsburys to work so mr gig does it.

Ned- happy birthday for ds . Lovely FB photos.

Ruby - bites are a good sign but sorry you are resorting to going to loo all the time.

Afternoon all

Had lovely day for DSs birthday - I can't believe he's 6!! Went to sandworld in weymouth - amazing sand sculptures on sci fi theme so Star Wars and dr who - DS very pleased! Legoland on Friday then taking some of his friends to cinem on Saturday. Wish me luck . . .

MAS good to ask BCN. They can only say no, but if they know you want to see consultant they should try to accommodate your wishes.

gig good luck for the assessment. Hope they're kind to you.

NJ We need another lunch soon - not seen you in ages. How long til scan?

ruby boo about periods, but at least everything's starting to fire up again, which I guess is encouraging. Hope you're well x x

Probably missed other things but can't scroll back on phone properly. . .

Lots of love to all x x

aw,happy 6th birthday little ned !!
I do see consultant from time to time but would quite like to know when so I can be prepared - bcns are always fitting people in so am hopeful.
T's AS levels sorted - English language & lit, history (2oth century European)and Government and Politics...phew.

Hello all and welcome beach, as others have said, once you get going on your treatment it's not so scary.

How exciting about your dh's new car Malt, we've got a reversing camera on our car (Qashqai+2) although I still rely on my mirrors when reverse parking. Do you use a wig cap with your wig? I found that now I have no hair/some stubble it acts like velcro with my wig so it takes a lot to make the wig shift. Just as well as we were at a party yesterday and mini mini pic decided to give my 'hair' a tug eek....could have been a conversation stopper let me tell you. Fortunately it stayed put.

Had my 3rd dose of chemo today, and had it confirmed that I'm having 6 doses of chemo not 8 so that means I'm halfway through...hurrah. However it means next time I'm having Tax and Herceptin and Tax sounds a barrel of fun!!

KurriKurri when you have a mo, would you mind if I asked you to hold my hand. I'm having a wobble as it's all a bit overwhelming and I'm having the treatment you did, chemo, node clearance, rads, herceptin and tamoxifen (can't remember if you had that). How did you find herceptin? I just need to know there is life past this. Has anybody else felt like this, I've been a bit teary and completely sorry for myself, anyone want to give me a slap and a stern talking to?
How do I find you all on facebook? It would be lovely to put some faces to names.

Hi Picture - yes I had the whole caboodle like you are having and it looks a pretty long haul when you are at the start, - I think I had quite a few wobbles too

But it is doable - try not to look too far ahead and deal with each bit as it comes. Herceptin is not too bad - its not like conventional chemo, -it does have some side effects but they are very manageable and you can continue with life as normal when you are on it.

I think the things that helped me cope were firstly thinking 'good, they are throwing everything they've got at the bastard' and secondly trying to take each day as it comes - I knew that my treatment was going to take two years from start to end of herceptin (yours might be shorter because I think they run herceptin concurrently with chemo now and I had a lot of delays and buggering about with my ops ) so I sort of resigned myself to getting through that time period, and making the most of days when I felt well and resting on the days I felt a bit crap.
You will get there my lovely

I'm still on tamoxifen, and I don't really notice any side effects now - you get some hot flushes etc when you first start it, but they settle down.

You will get teary days - we all do - I get them even now, and thats OK - a very shit thing has happened to you, and you need to go with your emotions, be kind to yourself when you are feeling down, have some treats ready to cheer yourself up, and plan something nice for when you feel well enough - even if its just coffee with a friend or a day out somewhere.

And you are half way through your chemo so you are doing well - you're on the home stretch now and honestly chemo/steroids make you feel miserable and down once that is finished your body will start recovering, and you'll start to feel 'normal' again. xx

Happy birthday dear LittleNed - what a big boy! - I can't believe it, have fun at legoland

Thank you Kurri xx handholding has helped massively.

I ordered a wig cap which came today, it's just like they've cut the foot off a pair of tights ! Not tried it yet. Did get round sainsburys without any disasters anyway

It does seem daunting when you think too far ahead, I try not to but it's hard. And at least we know they're throwing everything they can at it !

I've just befriended picture on Facebook and pointed her in the direction of some of you

Been peaceful here this afternoon, dd went to pizza hut and is now out somewhere with friends and ds went to his friends and football training, I've watched 3 downtons in a row, William has just died

Hope everyone has a nice evening

Bake Off and Midwives on the box tonight, that's my evening sorted.

Gigs Amber and Ruby, I've sent friend requests via FB. please feel free to ignore if you wish, I will not be offended, but of course if you accept, that would be lovely.

back from consultant - got all the details on the OP - fairly straightforward as no node clearance to be done (although he asked me if I wanted it even though he said there is no evidence there would be a benefit). Drain should only be in for 1 day so I will not need it left in when I come home. He decided when he saw me that I need a smaller skin expander than orginally planned .

Got no real answers on where we are going though and the impact of possibly splitting the chemo - he said there is no information on the impact of a break after 3 cycles then re-starting. Anyhow it will take 1 week to get all the histology back after the Op and 'the team' will meet to decide what the new treatment plan should be - that's all the surgeons and oncs together. Sounds like doing rads is even up in the air now. It doesn't feel like any of this is bad news but I just feel uneasy for some reason that I can't put my finger on.

Picture, that must be you on FB. Or I've just accepted a random friend request
I had 4 FEC, 4 Tax and then Herceptin. Tax was way easier for me, personally. No nausea, which I liked a lot. Herceptin is normally mild and fine for people. It hated me from day one so I couldn't stay on it for long, but my onc was happy with the amount I managed anyway.

Kitkat, ? Anyone else for one?

I have a wig cap Malt and wore it the 1 time I wore my wig - it felt secure and I had no probs with the wig slipping.

Picture - when I had my third chemo I was struggling a bit and the chemo nurse said it was a very common point for people to have wobbles so you sound perfectly normal to me. It is hard when you look at the treatment as a whole and see how long it will take (and I'm not even having Hereptin) - you just have to keep plodding on. What I find helps me is to think of other people I know (through work for example) and remember how often you think - 'crikey they're back already'. It's only us that feels it is taking for ever.

MAS - good news that the AS levels are sorted for T.

So you could have the op and not have to have anything else Kitkat :) waiting for results is awful but good that it's only a week
Have you had a sentinel node biopsy ?
Just put wig cap on and it felt really tight but I'll try again tomorrow

Yes it's me Amber, not a random nutter. Watching GBBO, far more preferable to Holby Shitty where one of the nurses is being investigated for breast cancer....aaaagghhh it's everywhere FFS

Malt - yes had sentinal node biopsy and they took out 2 nodes - the first had a micro-mets (2mm) and the second was clear. Both surgeon and onc agreed that there was no benfit in a full clearance and also that from a chemo point of view it would be treated as clear.
I don't know what to think about the rest of the treatment anymore - could be more chemo, rads, hormone therapy or just hormone therapy. Actually I'm quite upset as there is no longer a plan - I know this is irrational as I have not had bad news but I feel like I did at the initial diagnosis .

It's not irrational KitKat, and the lack of plan is only temporary, concentrate on getting past the op first then there will be a plan. Big squeeze.

thanks Picture - I know i just need to hang in for a while.

It's just we had a plan that I had bought into and knew exactly what was happening, why and when.

You have to trust that they they know what they're doing and it's good that they've changed the plan rather than just carry on when things had changed

Watching gbbo I'm a bit behind after putting ds to bed, fancy making some breadsticks we make bread sometimes but never tried making breadsticks

Malt - I make Salt and Pepper breadsticks from a Lorraine Pascale receipe I got off the internet
www.bbc.co.uk/food/recipes/big_fat_salt_and_pepper_59413

• they are really easy and the kids love them.

I'll try those thanks Kitkat :)

Just wanted to say a little something .

Look at you Malt !
A couple of months ago you were a gibbering wreck , and now you're handing out advice like the rest of us
Told you it would get easier didn't we ?
Xxx

Back into cycle number 5, I have put on half a stone on holiday! Must lay off the cake.

The new plan all sounds like good news kitkat.

Malt, have you seen those hat with fringe things? They look easier to wear, although I am sure you look great in your wig.

kitkat that all sounds like good news, but I can understand your uneasiness at the removal of your original plan, I would be the same. Good that it's only a week or so after op for the new plan (and exciting that the new plan could potentially be nothing other than tamoxifen :) )

I'm having a minor wobble on the run up to chemo 4 on Thurs, as it's the first tax, so new territory again, just as I had got the FEC sorted Still that will be 2/3 through, the end is now in sight :)

malt - I've been thinking of work too this week as I start getting my own kids ready for back to school. It will be odd not being back to work for the start of the new term...I have been wondering about popping in to see my 1-2-1, but not sure if it will be the right thing for him or if I'm brave enough

gigs hope you keep sleeping better now you are off the steroids.

Speaking of steroids, I've got a bigger dose to take for tax and twice daily (was morning only on FEC) - when is the latest I should take the afternoon dose to have any chance of sleeping?