Tamoxigang -the 39th thread ***

[MaryAnnSingleton]

cooee ! we're over here - just in case the current thread hit 1000 without our noticing Bring the trolley !

Ruby cross posted and ran sorry. Urgh that the lucky dip bag emptied itself out for the last one but I think that it is fairly normal for it to mount up. I was like some wilting delicate Victorian lady swooning left right and centre, everyone walked around with me ready to catch..... but it was surprising how much better I felt so quickly once I wasn't being repeatedly poisoned.

kitkat Didn't you say your onc was about how the chemo would work because you are so hormone positive? At least with chemo up front you know whether it is working, I shall never know if it was all worthwhile or whether just the surgery, menopause and Tamoxifen did the trick. There are other chemo regimes that work for Breast Cancer and the FEC /T is their latest that seems to give most benefit in general but by being able to monitor the effect of the tumour they can actually tailor the treatment to what works best for your tumour. I would expect if this regime doesn't shrink the tumour they might try another chemo regime or focus on the hormone therapy in consultation with you. Even when I was treated in general for a hormone positive tumour like mine they realised chemo only improved your chances marginally compared to the benefits of surgery and Tamoxifen, and now they think that most of that marginal benefit is down to what my Consultant quaintly calls chemical castration. Had I not had menopause as a result of chemo they were going to make sure I had one by other means, although at that time that was not necessarily the protocol.

More lovely birthday spoiling, parents have sent me lovely posh sun lounger after being appalled at rusty plastic Tesco ones If only it wasn't too hot to assemble it.....

Copt - yes that's right. Feeling a bit down about going through this for potentially no benefit. I just got told that we would do chemo due to my age (like Malt it's a belt and braces thing I think). Tamoxifen is apparently the key for me and I wonder if a few years down the line chemo will start getting ditched in these scenarios - wasn't someone on here talking about trials in the US? Still at least I will have tried everything I guess.
Onc is only planning to do FEC but I guess he may decide to go FEC-T.

Copt, chemical castration? Yikes, what a patient-friendly term from Onc that is

Kitkat, yup. Wish they would sort out what's what. Very annoyingly yesterday I came across a recent research paper saying that if chemo causes a pCR in my sort of cancer (complete s*dding off of the lump), surgery doesn't add anything to survival chances. So I've had two years of post-op lumpectomy pain, on and off, for nowt. Hey ho. All good fun.

For some reasons this image came into my head of topsy [[
www.google.co.uk/search?q=confessions+of+a+window+cleaner+photos&ie=UTF-8&oe=UTF-8&hl=en&client=safari#biv=i|1;d|6XzjfavDP2ifqM: delivery in heat]].

Copt those exercises would be good -will pm you about coffee sometime. We have air con so you are welcome to hang out round at ours .

Ruby my symptoms were by far the worst on last cycle but I got over it quite quickly.

I think exercise does help as I tried to walk/do Pilates during chemo. That's why no tips from Physio was a bit . I have checked and swimming still a no for wound (which is still bloody huge 5 x 2 x 0.5 - I know it was loads bigger but that still is big to me).

Just need to get my head round it and do some exercises- a lot of my issue is mental as I felt so fed up last week I sort of gave up on myself (including discussing flying to Switzerland to top myself which dh vetoed). I have also lost my nerve as after walk /trip to sports day with my pump was so bloody painful,I am scared to walk anywhere . Sorry bit of a diatribe there.

On another note, anyone have/had a biting toddler? Mini gig a sod about it now and am looking for tips aside from just always being firm/telling her no.

Amber it does seem like they know what works best but are still in the 'chuck everything at it mode' just in case. Don't get me wrong - I don't want to take any chances but I'm not sure we all need everything we get given.

Amber He often comes out with these quaint ways of putting things to me, one I particularly winced at was when delivering the very good news that at five years I had less chance of dying of Breast Cancer than the average woman, he couldn't resist adding "because most of the women in your statistical population that developed tumours that were not survivable have by now been culled from it" To be fair I encourage him by playing the statistical geek. I, and my friends, prefer the straight talking, and are very sensitive to any suggestion of being patronised, which I think he knows. He isn't arrogant or uncaring and the BCNs adore him so I assume, hopefully, he does have other approaches for other patients.

kit kat That research is going on in the UK as well. I have a friend who had a very ER + recurrence in the lymph node in her neck and our Consultant did not recommend chemo based on what the hospital is finding in trials, instead she has been referred to their specialists in Hormone therapy and has had an oophorectomy (she had already finished Tamoxifen) and one of the new drugs like Letrazole that can carry on the good work after Tamoxifen, sorry can't remember which but the good thing is that new ones are being developed all the time. There's a lot of research going on at the moment.

Have given up on assembling chair, as was sweating like a horse perspiring like a man glowing. I might le on the cardboard box in my pants.

gigs Big hugs. Exhaustion can do that to you, it would be amazing if you didn't get low, but it sounds as though you are getting somewhere, wound is smaller, pump is banished. And backs and muscles get weak if not used and prone to creakyness and acheyness, and boring exercises are the best way to deal with that.

We could do them together in our pants!!

Yes do PM me, I can escape DH!

Hello all, just been catching up with what everyone has been up to. Malt my Grandfather was from Lymington, it's very pretty, hope you enjoyed your holiday. Topsy Oh you made me laugh reading about your smear, esp the removal of watch first .

I had the second part of my eyebrow tattooing done yesterday and my upper eyeline in case my eyelashes fall out with the treatment. It looks really good, even if I do say so myself. Had my first lot of chemo today, very emotional going in. I had a bit of a moment at the entrance but gave myself a bloody good talking to and went in. I'd been offered a PICC line but didn't want it just because it's so visible and not for me so I asked if they offered Portacaths, yes was the answer but I'll have to wait for them to order one in as they don't offer them routinely because they're 'a bit of a faff'. Can any of you lovely people tell me if you were offered one especially if you are having/had Herceptin and which NHS trust you're in. So far my experience with our oncology service feels a bit like an uphill struggle. Anyway, I have my supplements as recommended, I'm drinking plenty of water and awaiting the nausea feeling fine. I've read that some people took their afternoon dose of steroid at around 2 instead of teatime as this helped them sleep better, should I think about doing this too?

Oh and I'm a FEC-T girl too then I'll start my tamoxifen (alongside my Herceptin) after my chemo too. I am taking my colleague's advice and having an oophrectomy after chemo so I'll go and see him to arrange a date. Proactive not reactive.

Gigs do the linky thing again , iPhone won't allow me to access it and I have missed your linkies

Picture def take your steroids as early on as poss to avoid psycho 3am eat everything in the fridge then kill all household members because they are sleeping soundly and it's just not fair sleeplessness

And even if your are not feeling sick , still take all your anti sickness meds . As the bastard creeps up on you !

Topsy

Here you go topsy special delivery for topsy.

Picture- agree with topsy on steroid taking. I was told to take mine before noon so used to have a 6am and noon dose.

Got 3 month scan next week- please god I don't have to have anymore treatment as need a break.

Thanks Gig I will do that.

picture my pharmacist recommended before 4pm for dexamethasone to avoid sleep problems.

gigs everything crossed for your scan next week. No useful advice on biting but I was a biter. Only selected victims though, my goody two shoes sister and very smug cousin. I was a bit older than mini as well you could try completely ignoring her afterwards, just pull her off whoever she is biting and put her down and don't say anything? Then give her lots of cuddles and attention when she's being good.

Just been for a blood test to check my blood count, yippee! Nurse got blood first time though which was good :) and part of my Next order has arrived but it's too hot to try it all on and prance around!

Love to all x

I'm home now boo, and no appointment letter so another chase up tomorrow ! Meant to be seeing chemo nurse then getting a date to start which I was hoping was going to be next Thursday! Aarrrgghh !
Picture I had to google oophrectomy as I'd never heard of it, is that recommended then no one has mentioned it to me
Gigs I had a biter too, think removal is all you can do really it's frustrating but they do grow out of it, hugs to you for feeling low
Ruby sorry about so many SEs but at least you're nearly there now
Too many to mention everyone but hope everyone's managing in the heat
Had a nice stop off at Winchester at the way home and bought some new sunglasses useful for covering tears, dark circles and I imagine later on lack of eyebrows and eyelashes. And a top from mantaray in debenhams, I have no justification for that but I just liked it :)
Must unpack and wash !

I have bought myself a fitbit pedometer thingy so that I do my walking and can see my progress. I love little gadgets. And it makes a graph on your phone.

I am not sure about swimming while on chemo. I have no white blood cells and swimming pools are full of snotty kids!

I love the heat and spending the day in my bikini. Sorry for people who are finding it hard though. I saw a very pregnant lady in town earlier and she looked really fed up.

My lymphoedema arm has blown up like a balloon. I'm not sure if it is the heat or the chemo or lack of exercise but there is no way I'm wearing a compression sleeve in this weather! I had to slit the sleeve of my sundress to put it on which is annoying. Stupid cancer.

bah about arm trice -probably the heat ?
gig fingers crossed for good scan results xxxxxxxx
Took some domperidone this pm as feeling a bit nauseous, but msybe I'm hungry ? haven't eaten a huge amount today as trying to be good.
S's mum has given me a bottle of Pimm's as an end of term thank you- awww..we talked about S growing up (she's 10) and was thinking she won't need me much longer which made me feel a bit tearful.

Gig, have a (((hug/ )))
Plenty of either for anyone else too.

PictureThis - I have a portacath, but it was put in on BUPA, so no idea whether my NHS trust would have offered it. However, even BUPA hasn't covered the full cost of the procedure ... not sure why, so I'm having to claim on on a Medicash policy. (The BUPA and Medicash are all work benefits - about the only benefit we get where I work!)
I've been at work all day - fine as long as I wasn't outside but with 4 hours travelling time, its been a long long day. Blood test tomorrow and second chemo on Thursday, so will soon be back to languishing on the sofa watching Homes under the Hammer.

Trice sorry about your arm I'd think it's the heat do you need to get it checked out ?
Mas how are you now hope the nausea has passed
Lily good luck for your next chemo, pleased you're able to be still working

I have the post holiday blues not helped by the fact that we should have been going to Rhodes tomorrow realise I should be grateful for the holiday I've just had, and I am but it still hurts

Like a bad penny I just turn back up again.
Just an update for you all and a big bunch of to thank you all for your support.
I had the histology report this evening there were cysts, fibrosis and micro calcification had developed since my mammogram. Nothing defined enough to give the lump a name. It may have been precancerous, but removal is curative.

My surgeon feels that had I not chosen to have it removed when I did he would have been recommending removal in the next few months anyway from the way it had progressed.
A lot of doors have closed this week my Decree Nisi was read on Monday so only 5 weeks and 6 days till my divorce is complete. I have got tough with ExH and told him that if he pushed for OW (who is a diagnosed alcoholic) to have care of DD I would go to court - he backed right down.
If feel perhaps my luck is changing and I wish all of you well.

Hugs to gigs are you going to let copt be your personal trainer and make you exercise? :)

lone sounds like good news and well done standing up to stbxh.
Waves to everyone - off to work soon, trouble with flexi in this weather is that you want to knock off early and its easy to build up a deficit. Will make a when I get there.

lone curative sounds v good to me- loads of luck with that and am really hoping your luck has changed xx
Felt sick last night too- more domperidone,am sure the heat doesn't help.