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**the 7th Tamoxifen Thread **

931 replies

MaryAnnSingleton · 20/12/2010 18:09

here we are...

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sandripples · 04/01/2011 07:30

I'll be back at work from today so not on here very much. Will try to pop in now and again to ensure you're all behaving. Smile

Good luck to those of you waiting for results or treatment.

I still have stiff joints which I know are due to the Arimidex and think are getting slightly worse but hey, I must keep this in perspective.

Here's to keeping as strong and healthy as we can possibly be in 2011.

MaryAnnSingleton · 04/01/2011 08:35

hope work is ok SR - always tough going back after a break...am drawing today.

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Cakesandale · 04/01/2011 09:21

Hi all - back from an extended break and (ahem) raring to go (not).

Hello to all, especially limejelly, silentcatastrophe and worried40 - i can't add much more to what has been said, but I am here to offer support and any help I can.

Here's to a happy, positive and healthy 2011.

To introduce a superficial note, as i usually do - haven't the sales been rubbish? I haven't been looking for myself but wanted to get a few bits for dd, but it has been a slog.

SparkleRainbow · 04/01/2011 13:36

Hi everyone.

Happy New Year, and may 2011 be easier than 2010, too cynical to askf ro a better one, easier sounds like a good compromise. Grin

Limejelly, silent and worried I hope you are all right. I think the wonderful women on here have been so supportive, I couldn't have got through the last few months without them.

MAS I have to get one of the medic alert thingies according to my gp, as you now. I can't help feeling it is a bit OTT, but I guess the answer is, what harm is there in having some anti bios on hand, and having the alert band etc, it might make a difference, and if you never need it then great. Don't know if I am trying to convince you or me! Xmas Grin Still feeling festive, so will it still work?

SparkleRainbow · 04/01/2011 13:37

Xmas Grin yes it will!

Cakesandale · 04/01/2011 13:59

I think you are right sparkle. It's as well to be prepared and cautious - then you can get on with enjoying life and not worry about it.

I really do have to get on with some work - but maybe tomorrow, when dd is back at school Grin I can never concentrate when she is here, I keep expecting to be called to get involved with something. She is actually being really quiet and industrious by herself, but I know it won't last Wink

MaryAnnSingleton · 04/01/2011 15:00

Am going to ask my gp what he thinks !
Enjoy an extra day of rest Cakes - I didn't do any work over Christmas,except yesterday when I did a couple of roughs...

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MaryAnnSingleton · 04/01/2011 15:13

oh and can I just vent a wee bit...
posted a picture ds took on facebook the other day of a rainy scene nr MILs which ds took -he photographs everything-it's of the wasteland beside the Tesco built on what was the pit -'tis mining country,or rather was. I wrote underneath 'ee it's grim up north' and then posted a pretty view of my favourite house in a village nearby -anyway,my niece has written an offended note underneath objecting to my being derisive about the north and that there's a lot she could say about southerners but wouldn't for fear of offending. I pointed out that it was a light hearted thing I'd written and had counteracted it with the pretty picture and also said how much I love the countryside of Notts,which is true- it is after all my dh's homeland (though between us he says his home town is a dump !!) Gah ! I think niece was being very po-faced and humourless,after all people have a go at the south too -it's British humour surely ? I tried to make amends by sending a pm to say I hadn't meant to offend and finished off by saying we were having black pudding for tea (which was true) -as a light hearted ending but she is remaining stonily cross and sent a curt and brisk reply. Am probably making too much of this,but I feel I've been rather harshly treated - Sad

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Cakesandale · 04/01/2011 15:24

Oh what a shame, MAS, it sounds like a funny comment to me. I don't know why people have to be so judgmental and willing to take offence but there seems to be a lot of it about. I have just been reading a thread in Chat that someone has taken offence to, when, really, if they didn't like the subject matter, surely they should just have left the thread and let everyone else enjoy their conversation?

Take no notice, your niece is being ridiculous. Easier to say then to do, I know.

MaryAnnSingleton · 04/01/2011 15:30

trouble is I mull things over and fret- I am always scrupulously careful to not offend, this was so obviously a light hearted jape,more aimed at showing that ds is interested in obscure things,like rainy scenes of wasteland. And ds has come home rude and surly and grumpy -he hasn't eaten packed lunch either as he was rehearsing for this O2 concert thing at lunch time and they didn't have time. Gah ! I'm going to eat some fruit salad,make some hot chocolate,meditate and paint.

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MaryAnnSingleton · 04/01/2011 15:32

thanks Cakes btw- makes me feel a bit better Smile

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SparkleRainbow · 04/01/2011 16:34

MAS I agree with cakes, try not to let it worry you, to be honest it is her chip (with brown sauce on it), let her wear it on her own shoulder, but not share it with you, and I can say that as a Nottinghamshire born lass where the red sauce brown sauce debate runs and runs! Grin

I would appreciate some thoughts here. I got an appointment (for tomorrow!) through for a doctor appointed by DWP to come and "examine" my ds for his dla which I submitted about 11 weeks ago. Bearing in mind my ds is 7, under the care of a NHS psychologist as not dealing with his medical condition well at all, his consultants readily admit that they don't know how to help him, and they can't find an orthpaedic surgeon in the country who will take ds on, there is no internet evidence/case histories of other children surviving the dislocations that ds has had, so nothing I can present. I have contacted the agency that is sending the doctor and asked about his qualifications and experience and been told "he is a medical doctor" - one would hope they wouldn't send a vet! It was suggested on the special needs thread where I posted for advice that I speak to this doctor alone,before I allow him to see ds, I am sorely tempted to send him away without seeing ds at all if he does the typical arrogant "I know everything" doctor attitude. I would appreciate your thoughts as intelligent and thoughtful women who have seen the medical profession up close and personal. Thank you.....sorry about the length of the saga. Smile

smee · 04/01/2011 17:57

Sounds bizarre to me that your niece has taken offence MAS. Is she always that prickly? Gah indeed. Put it down to January. Lots of grumps in the air I think.

Hello to Silent - hope the new hospital is better. Sounds mighty stressful for you.

Nice to see you back Pennies. You didn't really say how you are, so I hope you're thriving. Tough year you had, so may 2011 be all that last year wasn't.

Sparkle, I'm not sure what I'd do in terms of the doctor, but I think as a parent you have every right to have a one to one chat first though, just so you know what your son's going to be put through. Could you explain that he gets easily stressed, so you'd like to talk it through first. Then if you think they're a numptie, you can get rid before DS is subjected to anything. Hope it goes okay. I suppose so much depends on the individual doctor. Let us know.

Haven't time to say much - bounding through last day of school holidays, though 'bounding' might be an exaggeration - possibly more of a slow limp. Does energy ever return?? I do hope so, as I probably won't be on here as much from now on as I have to get back and do some work again. Not sure I have a brain left, so it might be a bit of a strain. Will most definitely pop in on a regular basis though.

Quick question - not sure if it'll apply to anyone, but did any of you consider having preventative surgery to ward off recurrence? I'm contemplating having the other breast removed, so am going to talk to Surgeon, but want to try and research it all before I go to see her. Any wisdom very gratefully received.

sandripples · 04/01/2011 18:10

Sparkle - I'd hope the Dr would agree to seeing you alone first, but the time pressure is always there isn't it. So make sure your request is logged so nthat the appointment allows enough time.

Smee - yes your energy does return and its wonderful! I'm still enjoying the novelty of it! My onc said my energy would return by Christmas (after I finished chemo in mid September and had had rads in June) but it was a bit sooner - I'd say early-mid December I felt pretty normal. Such a good feeling Smile I really felt as though all those drugs were draining out of my system during the course of November - I felt better and smelt better (!) and my hair became enthusiastic about life again. Still haven't had it cut but it needs it soon! Do not despair.

MaryAnnSingleton · 04/01/2011 18:11

agree with smee regarding Sparkle's ds and the doc - seems the most sensible idea and if you aren't happy then at least ds isn't subjected to being seen by him or her. Really hope all goes well.
Smee- can't really help as it wasn't something I'd considered - perhaps if my prognosis was worse/I was younger etc possibly, but I doubt whether I would. I wonder if lalaa thought of it ?
Niece is usually lovely and I am the favoured aunt on that side of the family -am putting it down to her having been off work since her op and going a bit stir crazy and watching too much Jeremy Kyle.

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SparkleRainbow · 04/01/2011 18:15

Smee - I know having the other breast removed is something that many breast cancer patients consider, particularly if there is a strong familial link. I can't offer any wisdom, only my feelings at this time, bearing in mind that I am only going to have the lump removed. The idea of "unnecessary surgery" is a consideration, but I would be tempted to do it because the surgery is not as scary in itself anymore, you know what is involved, and the benefits of taking all that worry away seems huge. I am the wrong person to offer advice though, it is a big step, I am sure the others would be much more informed. Just to send you big hug as you contemplate the options. Come back and visit soon, and happy 2011, and thank you for being so lovely to me in my hours of need.

KurriKurri · 04/01/2011 18:47

Sparkle, - I don't really know what to advise regarding your DS, but as others have said - you are his mum and you decide who sees him or not. So you have every right I should think to request a one to one session with the Doctor to see if you want him to see your DS, and so you can tell him how to avoid upsetting your DS.

Smee - I didn't know you could request preventative surgery, it is definitely something I would consider - I know surgery is a big thing, but for me worrying about recurrence is an even bigger thing - so it would definitely be worth it for peace of mind as far as I'm concerned. Anyway if you do discuss it with your consultant, I'd be very interested to hear her views. I think I'll as my onc. about it when I go in Feb.
There are no easy decisions in this business are there?

Tiredness does last quite a while (or it did in my case - although I had the thyroid thing which probably added to it) I think just make sure you pace yourself - I think I've got a leaflet or something somewhere about how to cope with fatigue, I'll look it out and see if there's any tips I can pass on.

MAS - what a shame your niece took offence, - your remark was obviously jokey. Maybe she's feeling a bit under the weather or something - it will probably blow over soon Smile

Good luck to everyone going back to work after the break or re starting after treatment, take it steadily SR don't wear yourself out.

Cakes - I haven't had much of a look around the sales, but the few things I did see didn't seem to be reduced much at all.

I did spend my birthday money from my mum today though, - I got some really nice walking boots, so I'm well chuffed Grin

smee · 04/01/2011 20:25

Ooh SR, you've made me all optimistic!! Fingers crossed I'll be like you, meaning energy restored by March. I will so look forward to that. Smile

On the breast to go or not thing. I had an implant fitted when I had the mastectomy - it was always going to be temporary, so have always known I'd have to have another op to remove/ replace, or something it (says she technically!). Surgeon said at same time she'd 'hoist up' the other breast so they matched (they aren't known for their tact are they?!). In other words, I have to have an op anyway, so why not have the other breast removed at the same time. At least then if I do decide to have more implants I'd have matching breasts.

Ramble, ramble.. I know it's drastic, but if there's something I can do to stop going through all of this again, am determined to do it. Am seeing an Onc in a couple of weeks, so will start asking questions then. Kurri I'll let you know what I find out. Maybe we can both ask our Consultants, then pool knowledge?

MAS, sad about your niece. Am sure it would rattle me too. She has been through it a bit, so maybe she's just finding life hard and lashing out.

Sparkle, hope the doctor's understanding tomorrow. Follow your instincts and I'm sure you can't go too far wrong. Will be thinking of you.

Pennies · 04/01/2011 21:50

Smee - I had preventative surgery at the same time as when I had my affected breast removed. I knew I wanted it done the moment I had my diagnosis, and I knew I wanted it done ASAP as well rather than waiting.

I would say there are Pros and Cons.

Cons. Well, I can't say I like the look. But then I've barely ever looked at it and I am committed to reconstruction so it's a temporary thing anyway. Also at the time it was psychologically a very big thing to deal with. Obviously for you opting to go for it at the same time as reconstruction then you would not really have these issues to contend with. I obviously can't comment on whether taking the mastectomy with immediate reconstruction affects recovery rate, but maybe someone else on here can.

Pros. Well, the relief of not having to worry about recurrence on that side or a new cancer kick starting itself there is immense. I see the worried threads on here and on BCC forums when women are facing their annual mammogram and as I'm prone to be a worrier I'm relieved that that's not me. Also, surgically it means it is easier for the surgeon to make a matching pair when it comes to reconstruction.

I thought it would take some effort on my part to get my surgeon to do a preventative mastectomy, particularly as (as far as we know right now) this was an opportunistic cancer, not a hereditary one. I worked out my speech in favour of it and delivered it off pat, expecting some debate on the matter as surgeons can be reluctant to submit patients to unnecessary surgery. Instead he sat bolt upright from his surgeon's laconic and unflappable slouch in his chair and said to me "Interesting. That's what most female doctors or doctors' wives would do". As far as I was concerned that was the best reason there is for doing it.

I admit I'm biased on the subject so do bear in mind that I never felt I had much affinity with my breasts. They never made me my fortune and one of the blighters tried to kill me! Joking aside, at the time they weren't something that I felt were intrinsic to my femininity. I must admit that the de-feminising that occurs through treatment has made me reconsider my views on this and if I can have reconstruction I will definitely go for it. I'm rather obsessed with boobs these days and catch myself staring enviously at a decent cleavage! I'll get myself slapped one day at this rate.

WRT to reconstruction, obviously I don't know what size you are naturally but initial forays into it have suggested that if you've had radiation on the affected side then it's difficult for them to go much larger than a C cup (luckily for me I was only a B and have no desire to go bigger than what I was) as your ribs are more brittle and can't take the strain or summat like that. I could be wrong though. A fellow patient told me that.

I hope this helps. Although the amount I've rambled on about it I've more than likely confused rather than clarified.

Pennies · 04/01/2011 21:55

Sorry just saw that you had a reconstruction when you had surgery, so I expect that would mean that keeping to your original size (if larger than a C) will be feasible as they would have retained enough skin to do that. My information was pertaining to someone who, like me, has not had temporary replacements put in.

Also that does mean that you probably don't need to ask about recovery after mastectomy with immediate reconstruction. Forgive my numptiness. Smile

Cakesandale · 05/01/2011 09:36

sparkles - I missed all this but I agree with the others if not too late. Try to see the dr first and if you don't like them or their attitude, don't let them see your ds.

I can't add much to the preventative surgery debate either. I never considered it, but would be interested to hear the oncs considered view.

As for energy levels: don't despair, smee. They do return. Sometimes sooner, sometimes later, sometimes (as in my case) in fits and starts. Just pace yourself and don't expect too much.

I am off to work. Probably.

SparkleRainbow · 05/01/2011 10:27

Thank you everyone, and it is not too late cakes the appointment is at 4.30 today. I will stand my ground and not let him anywhere near ds if I think it is not appropriate.

Given the news I have heard today I am glad I didn't worry about the sales, maybe there will be better deals to be had in a coupke of weeks when still nothing has sold!

Hope you are all ok today, those heading back to work, take care.

BurningBright · 05/01/2011 10:36

Hi All,

A belated Happy New Year. Hope everyone had a fab Christmas.

Hope you don't mind (as I rarely contribute to this thread, although I check in regularly to see how everone is getting on - I'm a bit of a lurker) if I interrupt with a request for your thoughts.

I am seeing a surgeon on Friday about reconstruction. From the very beginning I was very clear in my head that I wanted reconstruction and that hasn't changed.

But I'm very nervous about the idea of more surgery. Having surgery to save my life was one thing. Having surgery for cosmetic reasons is something else.

I don't really know what the risk factor is yet - something to discuss with the surgeon when I see him - but I had a bilateral mastectomy so the operation, to reconstruct both sides, would be a long one.

I am a lone parent to a four year old. If it were not for my daughter I wouldn't hesitate to go ahead, regardless of the risks. But the idea of possibly leaving my little girl without me, all because I had an operation that I could have done without, bothers me terribly.

So am I being completely paranoid and ridiculous to worry so much? Or would it be an act of immense selfishness to go ahead with the surgery?

Cakesandale · 05/01/2011 11:31

Hi BB - Happy New Year. I just don't know, I'm afraid. I don't know anything about the risks, but also i think so much will depend on your general state of health (weight, fitness, even frame of mind). But I do also think that if this means a lot to you, you should pursue it, at least, and find out what the professionals think. The operation could make so much difference to your mindset and to your life as a young, single woman with it all still to play for.Take a list of questions and don't be afraid to go through them all, however busy the surgeon appears.

Cakesandale · 05/01/2011 11:32

Sorry - and good luck! Let us know what they say, and what you decide.

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