TAMOXIFEN THREAD HERE ***

[MaryAnnSingleton]

Am sick of my messages never getting through - I have had 7 attempts to reply to Cakes' last post- am starting a new thread ....
this is what I wrote anyway.....

righto, this i my 7th attempt to reply on this thread - everything keeps disappearing !
My assessment is on 25th,and am told to allow two hours for it,crikey !!
Saw a lady in town yesterday who was having rads and finished at about the same time as me and she's just seen the onc. for her follow up - they are running very behind I know- so I emailed to ask about mine - I tie myself in knots in trying to be assertive yet not too needy or a nuisance - I suppose I just like to feel that everything is done in order. Am not worrying about my health -am sure breast is fine and dandy, it's more my emotional state which troubles me.
Anyway, they have made me an appointment but it's at the same time as my assessment so have emailed back and left a phone message...arghh !
Special thoughts for RWU today and of course KurriKurri - hope all ok..and of course you Cakes and Morph.

Hello all, welcome Pennies, I've been out all day or I'd have responded sooner. I had a mastectomy, and lymph node clearout, 18 months ago. Like you I went through a CT scan and that is hard, but I tried to look on it as something positive, there to help me and get me the treatment I needed. Anyway I was diagnosed with grade 3, and told it was very aggressive, but I've had chemo, and radiotherapy, and am now on herceptin and tamoxifen.

Its a long haul, but it's do-able, you will get into your own treatment routine, and everyone is here to support you if you need us. If there's any questions at all you'd like to ask about mastectomy and the after effects or something else I can help with, please just ask.

I don't think its denial to protect yourself. Use your instinct to tell you how much information you want to handle at any given time. I was scared like you ,- found it hard to take everything in, and there were some things I didn't want to know about.

I would advise in these early days to go with the flow, as much as possible. Be very kind and gentle with yourself. There's nothing wrong with a good cry - its a normal reaction to an extra-ordinary circumstance. And its a terrible cliche, but one step at a time, deal with each stage as it comes, don't try to deal with the big picture all at once. I know other people's stories are largely irrelevant, everyone's 'journey' is unique to them. But it definitely helps to have company along the way

take care and un-mumsnet-like xx

posting and dashing- not ignoring newbies or other posts will catch up in a bit!

KK- how is DH?

Rather a disasterous day RWU. Got to hosp. at 7a.m. DH all gowned and stockinged up. Supposedly first on the list. Then we were told bed crisis due to winter vomiting and ice accidents, meant it might be cancelled. So he waited in the pre op waiting room (men only), I had to wait in the main waiting room, and at 3p.m. they told him it was cancelled . So he'll have to do it all another day.

He's says he's selling his story to the 'Sun' "My eight hour hell in paper pants"

Ha ha ha! Loving the headline. So sorry for the delay though

I have been out all afternoon and so have missed the teatotal episodes - will go and take a look, am very keen to see what RWU said

Will have to be later tho as I have dd in tears over mean kids. Doesn't sound like much but she is very over sensitive to criticism. She won't tell me what they said (except one called her stupid). As I say, it seems like a storm in a teacup but she is so sad...

Couldn't help myself. have been and asked teatotal to go away.

Sorry to hear about your' husband's op being postponed KK. So frustrating when you are all keyed up for it. I dread my op being postponed again and do sympathise. At least I was called on the morning and asked to wait at home till they knew what was happening.

Fingers crossed for next time, for your DH and myself!

I haven't responded to Teatotal as I am carefully not reading the articles she is referring to - seems the best policy but therefore don't feel it would be valid for me to comment, IYSWIM.

Hi sandripples - i haven't read these articles either: but i read some of the ones she suggested earlier - on this thread, actually - and they were total crap. You are right not to read them. You meet people like this, I am afraid - avoid them like the plague. They would be laughable if they weren't propounding dangerous nonsense to vulnerable people.

don't bother reading them sandripples,it's all shite and not helpful at all. So sorry about dh's fruitless wait in paper pants KK -grrr
And Cakes -poor dd

Bumping!

Hi all

Hope you are all OK! Earlier today I was reading through the earlier posts on the Check your breasts thread and came upon Purple Peony's fabulous information - 4 hours of moderate to vigorous exercise a week cuts your chances of contracting cancer by 34% and of dying from it by 44% (or summat).

So I think we all know what we have to do ladies. And I am sorry to say this, but we need to shift our butts.

This is not something I say lightly. I am a couch potato. And I have had cancer, so that proves it, at least in my own case, you may be gym bunnies for all I know

I have registered this week for a yoga course and seeing this post made me actually skid along to it in the Jazz (but it was cancelled )- but I am not to be defeated. I shall go swimming tomorrow. Definitely.

PS Not you, sandripples - not yet. Relax with a cup of tea and a biscuit.

Cakes, I completely agree with that. I run a bit (only 5k at a time but I try to do that 3 times a week and also go to a spinning class when I can). I was talking to two nurses today who reminded me about Bob Champion and Lance Armstrong who both were physically very fit and that must have helped. Also exercise releases endorphins which make you feel good and from where I am right now anything that makes me feel good is of interest to me. A mum at school is a pilates instructor and her teacher had BC and she felt that her pilates got her through the disease. I'm going to start that as soon as I can but in the past I've never really got on with yoga as I'm a sweat-it-all-out kinda gal, but I recognise that I may not feel up to belting through the woods as fast as I can a week after chemo!

Had my first ever CT scan today. I cried and cried before hand and the lady there was so sweet. Whilst I was having the scan she went online and found me a load of blurb about the 5 stages of grief that people facing cancer experience and it was of great help to know that everyone feels like I have been feeling (pretty shite, esp yesterday). I have had so many people saying "oh you must be positive" that I was putting myself under too much pressure to be upbeat, and in actual fact you need the down days to get you through in a weird way.

Bone scan tomorrow. Yippee.

I think the wound from where they took the lymph nodes is a bit infected. It feels sore inside and a bit inflamed thought it looks ok on the outside. Typical that I saw the consultant only 2 days ago and it was OK then. Might go to the GP and get them to take a look and maybe get some ABs.

Hi all, hope everyone OK today.

Sorry your Yoga was cancelled Cakes, but I couldn't agree with you more about the exercise thing. Once I finished chemo I decided to take up regular exercise to get my strength back. Now I go to Yoga, aquafit and keepfit once a week. They are all groups run for women with cancer, so a lot of it is tailored to suit particular fitness/movement problems.

I also swim lengths at least once a week. And DH and I do eastern european dancing once a week (that's not a euphemism ). Apart from the obvious physical benefits, it helps my mood, makes me feel relaxed, and somehow pro-active. I've also made some really fabulous friends.

Things that helped me - getting a swimming pool pass so I feel compelled to get my money's worth! Keeping a little exercise diary in a notebook, so I can look back over the months and see what progress I've made. Choosing things I enjoy doing, if its not fun, its hard to keep going with.

Doesn't have to be anything formal, grooving round the house to the radio works just as well!

Hope I'm not coming over too evangelical, but I get such a lot of pleasure from it, I'd love to think others could too.

oh dear,I don't exercise - I do rush around a lot though,not the same I know. I try to walk into town most days ! I used to swim a lot when much younger but I find it a bit boring and repetitive things like lengths tend to feed ocd-ish things -which might be good for making you do a certain number of lengths !! My dad is 76 and goes to the gym and sails-I should follow his example.

Oh God you are all so active compared with me.
I used to be a gym bunny pre-dd but they got a load of new equipment while I was awaay, it looked intimidating, and I never got back. I swim a bit and walk. That's it.

I am determined to do more, hence the yoga, which i am told is NOT one where you just lie about breathing deeply - but also one where you do not have to be able to stand on your head. Normally I am very felxible (I have joint hypermobility) but i def need to ease back in gently.

I like KK's idea of the exercise diary - think I may do that (and intrigued by the Eastern European dancing: do you have to wear outfits? )

I SHALL swim today. probably.

Pennies, very best of luck with your bone scan and the results of yesterday's CT scan. It is horrible, don't worry about crying, the lady at the hospital sounds absolutely lovely, i am glad you saw her. Get thee down to the doctor's immediately if you feel you may have infection. Get the ABs going straight away, infections in those places can linger a bit if not nipped in the bud, owing to the slower moving lymphatic channels post-op.

exercise?? i've heard of that!

Good luck today pennies.

Hi RWU

Frankly I am puffing like a steam train having walked dd to school this morning, but I am determined to swim, and a girl can dream...

Hello all, hope you're feeling a bit better today Pennies, I'm glad you had a nice lady at your scan, it helps so much to have someone say the right thing at the right time.
Don't worry about the crying, I cried buckets, you have so much to take in and think about. There are no rules in this experience, no one can tell you how you should be feeling.

Hope you are feeling OK too Sandripples, is your friend with you yet? Just a few more days to go now

As for the exercise, I couldn't be further from the description of 'gym-bunny' , and I've never been a competitive sports type person. So like I said, I just went for things I thought I'd enjoy. And what with the tamox. and the herceptin, I knew I'd need to be a lot more active just to keep my weight on an even keel.

No costumes for the dancing! Its a real laugh, steps are a bit complicated, and DH and I are total novices. We thought we'd feel like fools, But as long as you keep roughly in time to the music, and go in the right direction, the expert people pull you along. The music is really lovely, and its a nice night out doing something together.

Pennies

I have just read your post again, and must say I have a message for all those who are telling you that you MUST be positive. Tell them to F* Off.

They mean well, but you must be how you feel you can be. And that is NOT always positive. You are right, you do probably need a few down days. But get help if they become overwhelming.

Oh, disappointed there are no costumes, that'd be great!

Know what you mean about doing something fun together, though. A few years ago dh and I took up Tai Chi - however, I didn't realise that he was practising the moves at home by himself between sessions (swot), so he turned into a total team star while I couldn't remember what to do from one week to the next. THEN we had to do exercises in pairs, and the teacher would not let us work with our own partner: I always got this completely enormous Lurch-type bloke (I am 5ft 1), and whenever we had to do the exercises together i could see right up his shorts leg. Fairly soon after that i started to refuse to go....

hope bone scan goes well today Pennies - yesterday sounds as though it was very emotional -quite understandable..I wasn't ignoring the posts btw,only dh is working from home so when I get to the computer I only have minutes to take a quick look at everything ! Def get the wound seen -underarm scar is bad enough without infection.

Hi everyone, I wondered where everyone was yesterday!

I have also been struck by messages about the importance of exercise in preventing recurrence. For example if you saw articl;e in October Good Housekeeping, this was mentioned. BYW I find that article interesting reading, AND I've been told Jenni Murray from Woman's Hour is doing a special progarmme about mastectomy on Sunday Radio 4 (11ish?? haven't actually seen it in the paper yet)

I am overweight -= not hugely but quite definitely (13st for 5'5''). Have been a bit of a yoyo weight over the years I guess and this is my heaviest weight, sadly. I have regularly swum once a week for years as it helps keep my back healthy. I usually walk a couple of times also, but only half an hour to an hour probably. So this is not enough!

For the past 2 years I have also run (or rather jogged slowly) the Race for Life, and spent about 3 months preparing for it as I am not fit. So I was quite pleased as it meant I was jogging a couple of times a week. I don't really nejoy this though.

I am an active person - always doing stuff - but find it difficult to fit in exercise with working full time, and have decided I want to shift at least a stone, once I've had whatever treatment I have to have. Have a feeling that if I were lighter the jogging would be more enjoyable! For the time being I am tryting to lose a couple of pounds and indeed did 24 lengths this morning.

Forgot to say I agree with you Pennies that at times you have to have 'down time' - I think its part of how we have to process all this. I wailed now and again, esp at first. I feel more on an even keel now, but I know its fragile and would all change depenidn gon post-op outlook.....

Also forgot to say that yes my friend is eher staying with me. We've been having a nice middle-aged time!! (Did you see those 'mimi-adventures of the couple naked in the mini - slapping a fish at individuals?? Feel a bit like that at times)

Anyway, we've walked round NT estate in the snow, walked round a local lake also in the snow, swum, had loacl friends for coffee, had lunch at garden centre, put a load of new bird food out as there are different birds in my garden just now eg heron and bullfinches, and played scrabble. I am enjoying all this and it takes my mind off waiting for my op! Also had some exercise yesterday luygging 8 bins to the bin lorry which still cannot get up our street and we had 4 weeks worth of rubbish, so I took our's and then bins of 2 neighbours as well.

That sounds like a really nice day SR. It's been a bit wet here for a proper walk, but I did drag my poor old dog round the park! I think she would rather lie against the radiator all day, but I feel she should get a bit of fresh air.

I am of your bullfinches. They are beautiful aren't they. We see them for a very short period in the summer if we're lucky. We do get woodpeckers though on our peanuts, and the occasional nuthatch.

Well done on your swim, I tell myself I am built for distance, not speed, as others at the pool overtake me .

There has been no sightings of bin men round here for ages. I keep putting the wheely bin out, but its not getting emptied. Combination of snow and bank holidays I presume.

hello all! am posting from the wii! very impressed about techy skills i appear to posess! no proper keyboard though so i'll post properly from the pc when gremlins go to bed!