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TAMOXIFEN**33**

996 replies

MaryAnnSingleton · 19/02/2013 14:04

new thread - bring the trolley over here....

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NedSchneebly · 20/02/2013 19:38

Evening all Smile Phew, found you all!

Had a lovely few days with parents, took DS to Marwell Zoo and saw Les Mis with DSis. I am convinced that Anne Hathaway modelled her short haircut on my current look. . .

Have taken the bull by the horns and emailed an old "friend" (known for 12 years) who I have had no contact from in 13 months Shock DH is best mates with her DH (we introduced them) and my DH is keen to go and visit them in their new house with new baby at Easter. I couldn't go pretending that nothing had happened, so sent her a FB message last week, followed by a bland reply about how busy her life is, would we like to come and visit at Easter? Confused so i sent one back saying I feel let down and disappointed that I haven't heard from her in over a year, and wanted to clear the air before we come up and stay. Will await a response. Sorry, that was really boring Blush

Kurri YAY about helpful surgeon, even if she is completely skinny and gorgeous [jealous] 7 lbs in eminently do-able and such an achievement to have got this far. Chuffed to bits for you Smile

How's half term going for all those with school-age DCs? Hope a lovely week is being had by all.

Have choc brownies for the trolley, and bagels with real butter for the non-chocolate consumers. LOts of love to all x x x x

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Copthallresident · 20/02/2013 19:44

KK I have to say that horrid Norovirus thing I had (apparently the velocity of the symptoms make this the most likely protagonist ) did in the end make me 10lbs lighter and with normal binge eating and drinking diet resumed I have kept 7lbs off. I am not recommending it in any way, it is right up there with the chemo diet, but just that it is a very achievable goal now.

Askokan Sad Don't forget you can PM any or all of us if you feel the need to talk to people who have been there, done that. It really does make a difference to have people like that to talk to sometimes, I hope you can find a relevant support group but if not, we are entirely irrelevant irreverent and can be relied on not to head tilt or suggest a positive attitude.........

Lone That is difficult, I hope you can find a way to juggle. Delaying your appointment won't make a difference medically but only you know if you can handle it psychologically. It's so great you have got DH to mediation. Can you not explain situation to practise manager and ask what they suggest

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Copthallresident · 20/02/2013 20:04

Ooh Ned Now I have 7lb hole to fill Grin

That is a difficult situation. I do now refuse to see DH's best friend but his now ex wife Cruella De Ville was only the start of it.

Half term here is being spent in bed and then saying can't go away, buy new school shoes etc because too busy...........Still only pyjamas to wash....... Also supermum here got her Kanye West tickets, only to realise whilst looking at Hello mag in Smiths at station, as you do, that I am funding that awful Kardashian thingy Shock Hope she is reading this because I have the tickets here and am now only too happy to put them on ebay if there is any further instances of stalking..................

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UserError · 21/02/2013 02:03

Hi, I've been on tamoxifen threads in the past, but never really felt able to fully join in (nothing to do with you lovely ladies, it was more about how I was personally coping) I've namechanged a few times since then and can't remember what I called myself! Oops.

Bit about me: Lumpectomy, chemo, radiotherapy - all done (stage 3 ER+ breast cancer, no spread to lymph nodes) and now I'm about 10 months in to the standard 5 year course of tamoxifen. Except, I have a confession to make - I am utterly, utterly shite at taking it. I really am. I've probably not had a single week where I've remembered to take it every day. I know that's ridiculous, I know it's probably preventing the cancer from coming back, but there it is - I'm crap and I'm telling you this because it's probably relevant.

Recently, as in within the last two weeks, I've started getting a LOT of heart palpitations. I notice them the most of an evening when I'm sat down, or when I'm lying in bed, which I'm told is normal as you're more likely to notice them when not active. It's like an extra strong 'thump' in my chest/throat. I was wondering if anyone had had anything similar, or whether it's related to my being shit at remembering to take the tamoxifen? I don't have a hospital appointment until April and I hate going to my GP about stuff like this unless I absolutely have to.

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UserError · 21/02/2013 02:08

I forgot to add, I've had palpitations before when I had a PICC line in and that's when I was told it's normal to notice them more when not active. I'm having a LOT more now than I did then. I counted before and I had at least ten within about five minutes. No pain or any other worrying symptoms though. I should also add that I'm very fatigued, as in 'tried to go back to work following treatment and couldn't cope' type of fatigue. My GP has sent me for basic blood tests to try to find the cause of the fatigue, but no results yet because I haven't actually BEEN to book in for the test. I'm utterly crap, noticing a pattern? Heh.

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MaryAnnSingleton · 21/02/2013 07:39

UserError welcome back ! Am sorry to hear about the palpitations- am sure not related to tamoxifen being missed. Maybe anxiety ? I went through a thing of hearing the blood pulsing in my ears when not active- I think you can be just more aware of these things when at rest. Anyway, it's always wise to report anything that might be worrying you,otherwise you'll go on fretting. And have your blood test !
Half term sounds very jolly ned Smile
Today I'll be sending a picture off and doing a bit of cleaning and I might make some stickers for a little relaxation !

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Lonecatwithkitten · 21/02/2013 09:29

As MAS says usererror have your blood test. Are you delaying as you are worried about what the results could be? There are lots of very mundane easily treatable things that could be causing you tiredness.
Is there a walk in blood clinic that you could go along to to get your bloods done without needing an appointment - so you could just do it today.
I sympathise about remembering to take meds I have to take some for another condition. I tend to keep them where they are very visible to remind me to take them - the current ones have to be taken with my main meal so they sit on the cookery book stand next to the cooker where I serve up the food.

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KurriKurri · 21/02/2013 10:54

Hi all -- welcome back UserError, - I echo what LoneCat and MAS have said - definitely book your blood test (Do it now GrinGrin )
I had lots of problems during and after I'd finished my active treatment, I do remember heart palpitations and extreme fatigue. A lot of it can be put down to the aftereffects of treatment - the fatigue can last a long time, months, even into years. My blood tests showed I also had thyroid problems (which I'm pretty sure were caused by my chemo, although hospital evasive on this matter!) and thyroid trouble can give the symptoms you describe.

I'm not suggesting this is what you have, but it's definitely worth checking and if it is the case is relatively easily treated and will make you feel a whole lot better.

Also its worth having a look on google for info about fatigue after cancer treatment, I suffered for quite a while and had various tips given to me. Mainly to pace myself, - don't try to do too much in one go, if you are active for twenty minutes/half an hour sit down and rest and recover for fifteen minutes, and if you have amajor days activity - an event or something, understand that you wil need a couple of days recovery because you will feel whacked out afterwards, and allow for it (It's less frustrating if you go with the flow and plan for it)

Also make sure you have a good diet, and are eating properly, regularly and as healthily as possible, and try to do a little exercise each day - a walk or something, but don't overdo it.

Another thought that occured is that because you are taking your tamox a bit spasmodically that might be making you feel odd. It certainly does affect how you feel especially I found in the first year and a half of taking it. I put mine in one of those pill counter boxes, otherwise I'd forget all the time too! - I found it made a difference what time of day I too my tablet, my onc. suggested I swap to taking it mid evening, and that I made sure I took it at the same time each day, and that helped too.

Anyway good luck, but do discuss any problems you have with tamoxifen etc. with your BCN or onc or GP. don't suffer in silence, - often there are little things you can do that can help. And it does get better when you've been on it for a while Smile

Good morning everyone else. Copt - thanks for the Norovirus diet tip Grin - I need to lurk around someone who looks as if the are about to vomit Grin But you are right, 7lb does feel achievable, I feel quite optimistic and excited about the whole thing now.

ned well done on calling out that woman, you are brave, it's important to clear the air with people. I've got a friend who actually had BC at more or less the same time as me (we were friends before, it was just an odd coincidence) and we met up regularly and e-mailed and supported each other. Then on our last meeting she said she didn't like being around people who'd had cancer, she wanted to feel normal again, and I haven't heard from her since Sad although I've emailed, and written. Part of me thinks, well that's her choice, and part of me wonders if something has happened to her, - I'd just like to know that she's OK really. (And I am too much of a wuss to phone, because after all my letters etc. it will be very awkward, and I don't want to come over depserate!)

Hello PlentyofTime - thanks for your encouragement Smile

have a good day everyone, hope all the kids are enjoying their half term.
I'm off to my art club this afternoon.

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KurriKurri · 21/02/2013 10:54

Oh gosh - sorry for the mammoth post!

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UserError · 21/02/2013 11:53

Thanks all. I'm going to book my blood test this afternoon, the medical centre is on the same street as my son's nursery so I have no excuse! I'm not putting it off because I'm worried. I'm just genuinely a bit of an idiot and if something is out of sight (i.e. the blood test booking form safely tucked away inside a notebook!) it's out of mind.

I think there are multiple reasons why I don't take the tamoxifen as regularly as I should. One of them is genuine forgetfulness. I do keep all my meds in a 7 day pill box, but I don't always keep the pill box in the same place! Another is resentment - this is going to sound ridiculous - but sometimes I'm all like 'You can't tell me what to do, I'm supposed to take this but I'm not going to and you can't make me, so nyeh.'. I know it's because I want to exert control over the uncontrollable, but knowing why I'm skipping doses doesn't fix the problem, if you see what I mean?

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smee · 21/02/2013 12:21

Waving from that madness otherwise known as half term. Smile

Hi again User, not mad to mention resentfulness in taking Tamoxifen, I have definitely felt that. I have palpitations with intense hot flushes - does that sound familiar? Also though when I was about 10 months in I had a lot of breathlessness and went to a lovely acupunturist, who said I'd forgotten how to breathe. She was right too, as my breathing was incredibly shallow and panicked. She said she sees lots of women at about that stage with all manner of very real symptoms, but 9 times out of 10 they're anxiety related. Not surprising after all we've been through, but reassuring to know. Go for blood tests, but honestly I'd bet you're okay x

Failing to keep up on any level. Got to run now out with DS to his mate's, then onto a work meeting and back again to pick him up. Will try and do better soon, but hope everyone's okay out there. I got poo-ed on from a great height by a red panda on Tuesday. Is that a first?! Grin

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MaryAnnSingleton · 21/02/2013 12:23

if it's any comfort,I sort of resent having to take my chemo drugs -esp. in the evenings,I forget about them until dh appears with the bg and a glass of water (bless him)

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MaryAnnSingleton · 21/02/2013 12:24

Grin @ panda poo smee !!

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Copthallresident · 21/02/2013 13:13

User I definitely see what you mean, I am still resentful towards Cancer and what it did to my life and somehow the doctors and treatments get caught up in that. I did feel taking the Tamoxifen, and still supplements, a tyranny but then that was balanced by a compulsive obsessive / superstitious (I just had a dyslexic moment there, couldn't think of the word and had to google "not walking under ladders" Grin) worry that disaster would follow if I forgot.

I still avoid the doctors until things become stupid. I actually just realised yesterday that the pain / clicking in my jaw that I thought was an ear infection has gone away. The nurse I was fobbed off with 12 months ago was very obnoxious and dismissive and said was jaw problem and I would have to go to the Dentist to sort it out. Obviously it was Cancer for sure Wink and have had niggling worry, not to mention clicking and problems biting down, and occasionally poking around with fingers and finding numerous suspicious lumps, bumps and strange inner mouthly things, for last 12 months, but then wasn't going to give obnoxious nurse who should have sorted it out the satisfaction of forking out for a Dentist. Hmm

However jaw was probably stress related, so perhaps seeing the dentist and not putting up with it and worrying for 12 months might have been a better approach? Grin

I agree I don't think forgetting pills would give you palpitations, more likely reduce symptoms than create them. However it could be anxiety or there could be something they could do about it so it would definitely be worth not putting it off.

I think part of my problem is not having a doctor I have any sort of relationship with, and I am very jealous with everyone on here who seems to have Dr Lovelies, who actually care. Might that be part of the issue? I do keep meaning to go along with my snagging list Grin, you know like you have for the builders, all the many things in your crumbling home that need sorting out, and then actually remember the name of who I saw, if they were nice, and try to build up a relationship. It is a really long snagging list and life would definitely be better if I got it addressed

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Copthallresident · 21/02/2013 13:26

smee We have priceless picture of Guy the Gorilla, remember him? at London zoo, having a pee on DB aged 6. But red pandas are way more rare and pretty Grin

Report from half term front, STILL IN BLOODY BED! GET UP! < DD "just a few more minutes, you keep waking me up">

Lone Why might Psychocat have started to nibble at my thesis? She sits on the table where it is strewn neatly piled and chomps away at the edges. She is on the same dry food she has been on for years so I can't think it is a deficient diet. Jealousy? A sudden fascination with Chinese and Latin American Literature? Worried that when the day comes to get it bound (admittedly probably not this century) I will miss some teeth marks............

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UserError · 21/02/2013 13:36

Copthrallresident, I think that's part of it - I don't have a wonderful doctor or any kind of medical person that I feel I have a decent patient/doctor relationship with. Ah well.

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Lonecatwithkitten · 21/02/2013 17:03

Hmm chewing a thesis no aware of any medical reason more likely jealousy than interest.

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snailsontour · 21/02/2013 18:29

Well done Ned for sticking your head above the parapet - I hope she responds soon!
Aren't peeps strange Kurri. What kind of a person shares the cancer ride with you and then dumps you at the end? I call that bizarre!
I've met up with 11 girls that shared the chemo journey with me that I met through the bcc forum, and they have gone on to become some of my dearest friends. Normal? What is normal? Ah well, I think it's her problem, very sad she feels that way.
Making meatballs here - so gotta dash - hmmm, smelling gorgeous:)

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PenisColada · 21/02/2013 21:42

Just checking in. I forget my tablets all the time and need one of those old lady boxes to put them in. It takes me awhile to remember in the mornings that I am an ill person who needs tablets Grin

ned well done for sending that email. If you get no response or a bad one sod her. You are not a woe is me type, far from it, and you are very good company so if she is being odd it is her loss.
One of my colleagues is being a bit odd with me and I would not have thought it of her so I am taking the sod her attitude.
My cancer Tourette's is lessening and I find it quite easy to resist shouting / posting inappropriate things when people are moaning about minor stuff. I feel it will return as I get closer to the treatment.

I am feeling almost 'normal' after the surgery. I seem to be in the no mans land between surgery and treatment knowing I will be feeling rubbish again soon.

I took the hooligan puppy out today by myself for the first time. He did not assault anyone so that was a bonus. The fact that I can't shout when he launches himself at someone to say hello was worrying me. He was quite good but then again I was on the beach at 7:30 and it was freezing so there was not many people about !
Still waiting to see ENT to see if my lack of shouting is permanent.


I have convinced myself I have foot cancer the last few days as my foot is sore. I haven't banged it so it must be a spread. Of course.

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topsyturner · 21/02/2013 22:26

People can be a bit weird about cancer .
I think they don't know how to react , so they just duck out if your life altogether .
I've had people turn on their heel and run in the opposite direction rather than speak to me like a relatively normal person !

DS got up today at 3.30pm !!!!
I was just about to go into his room and check wether he was dead , when he surfaced !

I'm off out tomorrow to the Friday market in town , and then for some lunch with a friend .
DH has an obsession with incense atm , and this market seems to be the only place to buy it over here .

Had a mad kitchen spring clean over the last couple of days .
Only problem is all my food larder cupboards are bare now , as I had to throw out all the tins and packets that were dated Pre 2010 ...

Will need to do a shop to restock .
So maybe a trip to the Asian supermarket may be in order .

Pig/dog sulking in the kitchen , giving me sad faces as DH has just gone to bed .
Pig/dog thinks his rightful place at night is resting his head on the pillow beside DH Grin

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topsyturner · 21/02/2013 22:29

Hi User
I think the "forgetting" to take tablets thing is very much a denial thing .
As in "if I don't take the tabs , I'm not ill" !
I'm a head firmly buried in the sand kind of girl myself .
But you really so need to get on top of those tabs .
Maybe keep the pack beside your toothbrush , and take them when you brush your teeth at night ?

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topsyturner · 21/02/2013 22:30

And Pen , ALL aches and pains post diagnosis are "cancer-itis" Grin

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topsyturner · 21/02/2013 22:32

Smee ???
Panda - pooed on , from a great height ?
Can I ask for a more thorough explanation ?
and for a link to the film of it happening ?
GrinGrinGrin

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NedSchneebly · 22/02/2013 09:05

Thanks for nice comments everyone - I do love you all. No response yet. . . I just feel a bit sad that I haven't heard from her and I guess I miss her a bit. But you're absolutely right pen I will have to adopt the "sod her" attitude. Her and her DH are my DSs godparents, but he has another set who are amazing, so no loss there! I showed email to DH and he said it was very sensible and honest and not bitchy or unkind at all, so I can't see how she would be upset by it, but I am still fretting that I have offended her. Will keep you posted.

pen Bet it was cold on the beach yesterday - brrrrrrrrrrrh! Twas bloody freezing here and we're inland! Glad hooligan puppy behaved for you. Do watch out for that paranoid canceritis. It can be a bugger. We have a rather fine, well proportioned paranoia box on this thread for putting our worries in and then we take it in turns to sit on it to stop them getting out. I'll happily perch my ample arse on the box for you x x x Quite like the idea of cancer tourettes!!

user you definitely do need to get into a routine with those tablets. I know how it feels, its like a constant reminder every day, but I know that it increases our odds. I have mine on my bedside table with my sleeping pills/ ADs and take them all together. topsy's idea of by the toothbrush is a good one. Could you set an alert on your phone/ tablet every day to remind you?

Talking of tablets (clever link to the previous paragraph there, did you see?) did I mention that my gorgeous DH bought me an ipad mini? He got good bonus this quarter and decided to treat me! He bought himself a KitchenAid blender that he's been lusting over for ages. My ipad is very lovely and shiny Smile

topsy cleaning?? Are you sure you're feeling alright?! I hope you are taking it easy today to recover Wink A good foodshop sounds a good idea.

Must encourage the boy to get dressed. Laters lovelies x x x x

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MaryAnnSingleton · 22/02/2013 10:42

hooray for ipad mini ned
V sad about your friend though - think you just have to say sod it really Sad
Off to that London !
Welcome home from French France dear gig Grin

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