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*tamoxifen* 31- in the bus shelter with the cheap booze

983 replies

Gigondas · 03/12/2012 17:13

Shiny new thread

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Gigondas · 11/01/2013 20:39

That's natural as I know I was but you do get into a rhythm with it and it becomes more routine .

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NedSchneebly · 11/01/2013 20:46

Evening all Smile

Sorry, been absent. This work business does chronically impinge on MNing time doesn't it?! Had a good day today - think it went OK. Managed to get my new girl (previously homeschooled, never been to school before and only started this week) in without her crying and managed to persuade her to leave her teddy with me while she had her lunch. And she ate some lunch too, so an improvement on yesterday. She's very sweet. . . less sweet is the annoying boy who has to tell me at every inappropriate moment (like when I am teaching and the whole class is listening) that he loves me and keeps repeating it until I respond. Love you. Love you. Love you. Love you. . . freaky child. . . May have to have an embarrassing conversation with his mum.

AtoZ Headache, yes, for days on end. . . Flatulence, definitely - ended up bloated at the top and constipated at the bottom, if you see what I mean. Not pleasant. I would also lose hours sitting on the sofa or sleeping. Just remember that each day passed is one day done, and one day towards feeling better. I turned a real corner on day 6/7 so there should be light at the end of the tunnel soon. Hang in there, love x x x

gig glad specialist nurse was ace. Sounds positive x x x

sometimes hope pub fun.

copthall sad about your friend, but at least her family are informed of the risks and taking steps to get themselves checked out.

Waves to everyone - I am so, so grateful for all your support with everything I have been whinging about the last few weeks. I know I've been a misery-guts and exceptionally self-centred, but its really helped ranting on here. I know that I still have some way to go, but I feel positive that work is going well, and I know I can get better Smile

Love you all x x x x x x x x x

jchocchip · 11/01/2013 21:07

waves wildly to ned agreed work gets in way of mning - glad you had a good day at work xx

smee · 11/01/2013 21:28

Nipping in to raise a glass to the weekend. Been away for work, but back now so will catch up. Any news from HND, is she home yet? Wine for all. Smile

topsyturner · 11/01/2013 21:45

Evening All

HND update
She will prob be in at least till Monday . She's had to have blood transfusions today . And they are still using leeches on her
She was quite cheerful this evening , but I suspect that's down to the morphine !

I take no supplements whatsoever .
I have an awful diet .
I drink far too much .
I don't deserve this period of remission , do I ???

MaryAnnSingleton · 11/01/2013 22:07

I recommend violet creams (that's my dietary advice)
Last dose of chemo swallowed this evening - a whole week off - yay !!
I've always liked Douglas Hodge- great actor,lovely voice and looks kind.

KurriKurri · 11/01/2013 22:23

Pen - I think there are certain super foods that are supposed to be good if you have cancer - things like red berries, blueberries, and lots of other things with anti oxidants, broccoli, green veg etc - and whether or not you buy into the whole anti oxidant thing or not, they are all healthy things to include in your diet. My onc, recommends cutting right down on sugar (I am struggling slightly with this but trying). manuka honey I'm sure is fine, but with anything you take in the form of supplements, its worth checking with your team that they don't interfere with any drugs you are given in your cancer treatment.

AtoZ - it must be scary for you - I remember how I felt. Everyone is affected differently, but I found that the chemo sort of worked its way through my system, and they mucus membrane areas were the things that were hit as the cells are killed off. So Runny nose all the time, sore mouth and throat, and then down my intestines - so lots of diarrhoea (but I had had major bowel surgery several years before so my system wasn't in tip top order).
So the best thing is to be prepared for anything like that - have loperimide (diocalm - but you'll get it free from docs under the chemical name), use your mouth wash religiously (I assume the hospital have given you difflam, but you can use any alcohol free mouth wash if not), also fresh pineapple is supposed to be good for keeping the mouth clean during chemo.

Have the hospital given you a booklet full of tips? - if not, your chemo nurses will have loads of advice and helpful hints to keep you comfortable.
Remember you may well escape some of the side effects, most people have some but not others, and as soon as you do get something that is in any way incomfortable for you, tell your team or ring your GP/practice nurse - GP can offer help, advice and prescriptions over the phone -usually you can ring ffirst thing and book a phone call from the doc and they call you after morning surgery (sorry if you know all this stuff, - but I didn't so thought I'd pass it on just in case Smile)

glad the nurse was good Gig Smile

ned - well done for getting to the end of the first week back, and the kids sound nice (even Mr LoveYou LoveYou Grin) And you re not self centred or ranting, - we loves you madly neddy xx

topsy - of course you deserve your remission you loon, - red wine is supposed to be good anyway (and as we all know its one of your five a day)

Poor HND - leeches!!!!! - seriously they use leeches? Bloody hell.

have a good weekend all x

Gigondas · 12/01/2013 10:23

Topsy Grin at your remission - course you deserve it. And as I remember it wasn't without cost as you were half dead and hospital for yonks with pneumonia.

Poor hnd- blood transfusions are yuck . And is she in hospital in 1786 -leeches!!?

Feeling lot brighter today so long may it last- will be baking later so will offer some for those who want it.

Oh and kurri there is a "do you believe in ghosts" thread in chat.. You know you want to.

Ned - sounds like you made a fab start. You sound like a great teacher but rest up. Any more choir plans?

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GoLadyEdith · 12/01/2013 10:23

NC here. Just updating - I've a history of bc and in Dec I shared my worries about a uterine polyp and the possibility of endometrial cancer. I iAd a lot of wonderful support here for which I'm grateful. I went offline cos I couldn't cope with the news just before Christmas that in fact I had a small metastatic lesion on my cervix which was the culprit behind the bleeding. Polyp was a red herring. Sad I was utterly devastated and have just this week finished a further stressful round of tests, endoscopy, scans (bone and MRI) which oddly have left me feeling much more hopeful. The lesion's been excised, I've been swapped to letrozole and for now they don't think chemo or rads or hysterectomy are called for. All of thesecthings were on the table and I was freaking out !! I have another appt with onc next week but for now I'm being told they think they can keep me going for a good few years Smile. What an odd universe to think metastatic cancer can be sort of manageable after all ...

As an aside do any of you go down the vitamin /supplement route ? My surgeon not for the first time recommended curcumin, omega 3 and vit D supplements. I'm already taking curcumin and lowish omega 3 but he says 1000mg daily so I've been online to buy premium supplements and I'm going to give it all a try. Also planning to get vit D levels tested in a lab. There's a lot of interest in it < I'm not into woo, honestly> anyone else share this habit ?

Happy new year to you all. I'll pop back occasionally but meanwhile thank you again for the support.

Gigondas · 12/01/2013 10:27

Hi ladyedith- sorry it was bad news but I do think mets can be managed (there are a few of us here) so join the gang.

I posted yesterday about my supplements (maybe subtly different as I have sarcoma) but I also take curcurmin as turmeric (teaspoon in coconut milk with some black pepper). Am big believer In targeted woo as it can help make treatment more effective (good science in that) and manage side effects (Manchester uni study showed acupuncture helps fatigue with chemo).

OP posts:
Gigondas · 12/01/2013 11:34

Where are you kurri [[
www.mumsnet.com/Talk/_chat/1657466-Do-you-believe-in-ghosts dog ghosts]]

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Copthallresident · 12/01/2013 12:04

LadyEdith Sorry to hear of your mets but glad you have cleared chemo off the table. My Cervix is a war zone , two lots of excision, a cone biopsy and follow up lazer surgery to get rid of more Cancer but it was cervical and in situ, and then they threaded it with "stout thread" when I was carrying my DDs because it had given way and caused me to miscarry. I am due a smear but the average Gp has never seen anything like it and whilst it is entertaining to see how they handle the suspicion they have a patient here with something nasty it also invites in the paranoia so I am steeling myself. I almost always end up with a Colposcopy . I just hate having some man staring up my fanny with binoculars!

Pen I also take milk thistle, it's good for preventing hangovers apart from anything else! It protects the liver and in Germany they actually prescribe it for anyone with Liver disease.

I also take a multivitamin, and a omega 3,6,9 capsule , and added Calcium because i have Osteoporosis . I am rethinking coenzyme Q10, there was a proper randomised study that showed 200 mg a day reduced recurrence in bc patients but now there is an American study that shows women that have a high level have a higher chance of Bc , no direct correlation but enough, like soya to warn women to avoid it. I hate this precautionary stuff because you wonder if it is driven by prejudice rather than Science. Anyway it is also good for joints and I need all the help i can get but then again it is really expensive.. Hums....ahs.....

Thinks do I rattle more than gigs?

I do use a lot of turmeric in cooking, and lentils, and only good oils , i avoid anything with bad oils, we're almost veggie and just generally focus on a healthy diet but then I was a lentil weaver before and that didn't sTop me getting cancer more than once...

I also take glucosamine sulphate, this is not on nutritionists advice but the bionic vet (as he was christened by tv programme on him) recommended it for goon dog who has worn out his joints in just 8 years of lunacy and I thought if it would help him it would help me!

On the same theme LEECHES! Years and years ago when i was a teenager my horse was on his way out with something called fistulous withers, we had rescued him from a trekking centre where they had allowed saddle sores to get infected. The vet had heard that they were experimenting with the use of leeches so we tried them as a last resort and they worked, he went on to live to a ripe old age and teach my nephew to ride! Obviously hnd may not be interested in a future as a good ride ;-) but they work! Give her my best wishes and I bet her tit is going to be amazing.

AtoZ I had problems with my guts too and constipation that led to the worst piles since giving birth, I longed to go into gory detail when people told me how well I looked ! You should see my ......

I can 't add to all the advice above except do watch your temperature like a hawk. Get anti biotics at the first sign of any infection. I ended up in hospital because I didn't want to be over dramatic about a sore throat.

Tipsy Topsy everyone deserves remission, it's the Cancer none of us deserve.

KurriKurri · 12/01/2013 12:47

Gig - my NY resolution (almost certainly doomed to failure Grin) is to stay away from ghost threads

MaryAnnSingleton · 12/01/2013 12:57

kk I saw an earlier edition of that mag and it seemed a bit suspect, in my opinion- but am certain you wouldn't be sucked in by too much unreliable woo,as opposed to sensible supportive woo.
LadyEdith sorry to hear about dx- but I have also been told that mets are treatable and manageable these days. My onc said the only important thing he reckons,above diet and whatnot,is more exercise - walk a bit extra etc etc- no supplements mentioned. I guess they all have different ideas.
hnd is having leeches ? yike.

smee · 12/01/2013 13:15

Blimey, can't keep up with you, so apologies if I'm about to miss lots, but huge YEAYs for OTM. You are so v.v.clever to get through all that chemo. So pleased it's over for you. x Smile Smile

Pen, not long to wait now. On your woo friend, you could tell her about Steve Jobs. He went down the non-medicalised route when he first had cancer and obviously it didn't end well. Sad

Lady Edith, bugger about the lesion. That is a tough thing to face, though good that they seem quite hands off treatment wise. I think I'm about to be switched to Letrozole too, so we should compare notes (mine's not confirmed yet, as have to have Dexa scan).

Spotted leeches news on HND Shock blimey that sounds almost medieval. Poor thing, but maybe the blood transfusion will perk her up. Send her huge hugs from me, Topsy, hope you're okay too. x

Ned, well done on starting work. Was thinking of you. Hope you're not too wiped out by it all.

Hope you're not too bad today AtoZ. Are you keeping a diary of all side effects/ how you're feeling day to day? Might help your team work out how to reduce things for you next time?

Sunny, nice to meet you. I am like a few of the others so a bit of lymphodema but nothing too troubling, so I ignore it. Smile

Hugs to Gigs for wobbles, though good that you're feeling a bit brighter today. Noodles and Rosé sounds like a good combo. Does mini-Gig get all giddy at the idea of snow? DS keeps going to the window looking for it! v.sweet.

MAS, that article's great. Whatever happened to the book you and Sometimes were plotting?? We should kick start that again? I'd bet between us we could fill a book with anecdotes/ facts and all. I'd have found it ever so useful when diagnosed.

Cold here and DH has decided to do something which involves opening the back door to garden several times an hour. Brrr.... 'tis my birthday though, so we're off out for a stroll along the Thames and tea somewhere. I will bring back scatterings of whatever we find for the trolley. Waving to all those I've missed, but this is already epic length. Wishing you all a gorgeous weekend. Keep warm. Smile

KurriKurri · 12/01/2013 13:23

MAS - I suspected it might be bollocks - I bough tit in a bit of a hurry having seen on the front cover that there was an article about Coley's (I don't necessarily subscribe to the idea but wanted to read more for curiousity's sake) I haven't got round to looking at the mag yet. But will do and will come back and report (if only to save anyone else wasting their money!)

Happy Birthday young Smee Grin - hope you have had presents and cake by the bucket load, river walk and tea sounds lovely.

KurriKurri · 12/01/2013 13:24

that should say 'I bought it', - didn't mean to shout 'tit' at everyone Grin

MaryAnnSingleton · 12/01/2013 13:51

Grin @ kk
Happy happy birthday dear lovely smee - have a fab day (am wearing the wee birdie brooch today in your honour !)
Yes indeed about the book - we seem to have both been overwhelmed by work and it has slipped down the list of to dos - I hope we will get to do it at some pointSmile

Gigondas · 12/01/2013 15:11

WineThanks For birthday smee.

Grin At tit kurri.

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NedSchneebly · 12/01/2013 16:21

Happy Birthday to you,
Happy Birthday to you,
Happy Birthday dearest smeeeeeeeeeeeeeeeeeeeeeeeeeee
Happy birthday to you!

Hope you're having a completely lovely indulgent day Thanks and Wine for you, my love x x x x x x x x x x x

gig glad you're feeling a bit brighter today. Thinking of you lots x x x

kurri if you can't shout TIT here, where can you?
In fact, tit tit tit tit tit tit tit tit So there Grin

Watching DS and small friend playing Lego and Angry Birds on the ipad. Very cute Smile

MAS sounds as if the SEs are not so troubling this time around? Maybe means got the levels right for you? Hope you are having a nice day today x x

topsyturner · 12/01/2013 16:57

Oh My God !
Coleys immunotherapy ideas , that's apparently what I have done naturally .
My Onc says that's what caused my remission !!!!

topsyturner · 12/01/2013 16:58

Happy Happy Birthday Smee !!!

topsyturner · 12/01/2013 16:58

Happy Happy Birthday Smee !!!

Gigondas · 12/01/2013 17:15

Smile At woo queen topsy. Next you will be telling us about the healing power of pot noodle. But must say I thought that when read about it . It's not as madextreme as the Mexican place that believes in coffee enemas.

Ned does your ds know there is a playmobil pirate app? Wink

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sandripples · 12/01/2013 18:02

Hello everyone - just popping in to say Happy Birthday to Smee, send support to new ladies on here and hugs to those I know. Also remember I'm on Anastrozole (those who are going onto aromatase inhibitors) so after 2 and a bit years of experience am obviously therefore a world expert by now.....I had some joint stiffness at the beginning for 2-3 months but my body seemed to adjust and joints usually fine now - except when I've gained weight such as after Christmas when I do feel them again - sigh. Trying to get back to my usual lithe self now....I suppose it s actually helpful if my knees hurt as they force me to eat less!

I do think the anastrzole causes some hair thinning - not drastic, but annoying. However, that's not such a big price to pay if they work. I believe they cost about £6 per pill.

I don't take any supplements at all as I always think they'll clash with medication. Do try to eat healthily though, and am doing well on my 'dry January' so far. I've never done this before but its (for me) much easier than giving up chocolate would be so I can't really crow about it. Am trying to go fro extra walks.

Love to all, especially those dealing with newish diagnoses
x

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