**the 7th Tamoxifen Thread **

[MaryAnnSingleton]

here we are...

Hi Limejelly, - I'm going to try to answer your questions as best I can.
As far as the op. goes - I had a mastectomy, came home the next day and had district nurse come in everyday to check wound and then remove drain (you will have a drain in your wound for approx 5 days, which is a bit restricting)

When you have nodes removed, it leaves your arm open to infection (although I'm not sure how vulnerable you are if you just have sentinals removed - I think you may still have a fair amount of protection from your remaining nodes.) but being careful means wearing rubber gloves for cleaning, gardening etc. trying to avoid wounds on that arm and getting medical attention promptly if you do get an infection. Avoiding blood pressure test on that arm, and any needle for bloods, injections etc.

Exercises - I still do mine (2and a half years after surgery) or I get very stiff. But - I had a radical mastectomy - and lost flesh from all round my armpit and round my back, so there was quite a lot of nerve damage, I don't think your op. will be quite as drastic, so you may find you are not so affected. I did lose fine motor control in my arm for quite a while, but I've got it back gradually.)

With regard to lymphodema - I think that is a lot less common than it used to be, and also much more likely if you have a lot of nodes removed. I don't think you should worry too much about that aspect.

The leaflets and info. are a bit overwhelming - it is so much at once and sometimes I think its best to just ask the BCN as and when you need info. Often written info. gives every possible effect and complication - doesn't mean everyone gets them.

GA - will make you feel pretty tired for a week or so or possibly longer - people vary obv.

So - yes it is a big op and you will feel worn out and sore afterwards. So rest and they will provide painkillers for you.
Your broken arm as well means that you are going to be fairly restricted for a while, but your left arm will I think be usable after 2 - 3 weeks. (although my memory may not be accurate, so others might offer better advice here)

Do you have help for a few weeks until you are back on your feet?

You'll be OK driving with rads.

Shopping bags - don't carry heavy ones, I can't even now- it makes my arm ache too much. I use a wheel basket, - which old-ladyish as it sounds, is a lot easier.

I know it's all very panic-making, but honestly you will get through it all, just try to deal with it a step at a time, get your surgery out of the way. Then you can concentrate on getting your arm back to normal.

I'm sure there is someone on here who's had surgery more exactly like yours, so will be more help but I hope I've covered some of your questions. If not just ask away and we'll help as best we can

Loads of luck with your surgery xx

Sorry - just realised how long that post is ! - I hope you wanted to read an essay LJ

Happy and healthy New Year to you too Smee - have a fun day tomorrow

Hope everyone else is felling good, and RWU is back down to earth after chatting up the police - see her thread in chat!

Oh also just realised - I am usually KurriKurri LJ (in case you are thinking who the hell is this woman )- I had a brief Christmas namechange to itsKurriiistmas

Thank you so much Kurri, am v grateful for any real life info and experience rather than from the leaflets! Oh dear tho - am v worried about the first wk or 2 then. DH is out of the house from 8am til about 7pm. Is contractor so no work = no money. 2 DSs 10 and 7. My lovely sis might be able to come for a few days BUT there is something else going on - mum has had loads of UTIs over last year, recently had blood in her urine. She had a CT scan 22nd Dec and there is a lump in her bladder - has had a biopsy but no results yet. Haven't told her about me yet as she is such a worrier, history of depression. It could turn out that she is worse off than me and needs my sis more. She and my sis live about 30 miles away. She may of corse be fine tho .
Am hoping then if surgery as planned and does not turn into mastectomy, and if nodes ok, should be at lower end of the damage to arm scale. Surgeon did say may not even need drain or only for day or 2. If I hadn't f*cked my right arm too I wouldn't be so worried.

I hope you do manage to not have a drain LJ - because they are a nuisance (you have to carry around a plastic bottle attached to you with a tube - and it really gets in the way!)

How independent are your boys, - I mean will they get on with things sensibly and amuse themselves on their own while your rest? - try to get lots of rest while they are at school. Do you have to drive them to school? - is there anyone who would be able to give them a lift to and from, and any friends who would give them lifts to any clubs/activities they go to?

Is there any way you or your DH could make up some quick meals and freeze them before you go in for your op., so no one has to worry about cooking, you can just shove something in the oven for the boys tea. You won't be stuck in bed for 2 weeks, after the first few days, you'll be able to potter about, but it's important not to over do things.

It's hard to predict exactly how anyone will feel - some people do recover much quicker than others and that may well be you It's the broken arm that's really the big nuisance isn't it?, I presume it will be out of action for some time - it sounds a really nasty break,

I'm really sorry to hear about your mum, what a stressful time you are having . I hope there is good news from her tests.

Ooh Kurri you are brilliant!v I couldn't even think about what I needed to think about iyswim so your last post was a great help in that. Have used much convenience food since broken arm, must restock. Yes yes must batches of generic tomatoey-mincey sauce etc. How i used to sneer at pre-chopped veg at the supermarket! I see it could be my friend now. DH has been helping but not here at boys' teatime. Boys are pretty good and would be fine if I let them play too much Wii! DS1 helpful. DS2 mild asd so not very. Have lovely friends/neighbours who will help with school run I'm sure.
Just spoke to sis - mum hasn't actually had biopsy yet - waiting to be assessed as needs GA for biopsy.
Yes it's the broken arm/wrist that's really complicating things.

Blimey LJ, you most definitely win the prize for worst run of bad luck. Makes total sense now, and what Kurri's said in terms of advice does too.

I'm similar to Kurri, so had a mastectomy and also full node removal. The arm did take a while to get sorted - I think it was six weeks before I really felt as though I'd got good movement back, but only a couple before it was useable for most things. I'm 9 months on now and can do everything I did before, though it still feels slightly tight. Rads didn't stop me driving or affect my mobility, so depending on how soon you start, they shouldn't stop you either. I'd have thought your broken arm would be more of a problem with that.

Best advice I think is to accept that you're going to have a tough couple of weeks post op, so get lots of help in and stock up on ready meals that the boys can zap in the microwave. Once you're through that, we're here to help on exercises and thoughts on pathology results, etc, etc. I didn't find the op too bad, it's the faff of the drains that's annoying, so I really hope you manage to avoid those. They're not the end of the world, but a bit yuk and they get in the way of everything.

Happy New Year then - am sure it feels a bit of a lot to get through, but you'll soon be through and it sounds like you've caught it in time, so keep remembering that as it's a huge positive amidst it all.

Happy New Year to all others too. Have just ordered our takeaway, and am heading for a glass of something deliciously chilled. Hope you're all doing similar.

Happy new year ladies!!
I've been having a bit of the usual rwu madness the last few days- kk knows one of my exploits lol, will catch up when it calms down... Welcome to limejelly x

First of all, Happy New Year to everyone on here and I do hope it will be a good healthy year.

Limejelly- I had a wire guided wide-excision to remove cancerous lump last January so I'll tell you how I got on. (Don't panic - I'm still here and in some years 2010 was a good year depsite the traumas)

So, you need to think in terms of a team of support people ie friends, relations and anyone who offers help. Even if you don't need them all at the start, you'll find them extremely helpful as things go on. People generally do want to help, and if you have a couple of friends you'll find they become invaluable, especially as you may well not be able to rely on family. (I have no family anywhere nearby and no parents or parents in law so friends were my main support)

I think the DCs will rise to the challenge of helping you if you can explain what sort of things you need help with, and perhaps some specific jobs they will have to do.

KK's idea of stocking up the cupboards is excellent. Personally I found cooking a pleasant distraction too, (but with your broken arm out of action that's worse). When people ask what they can do, ask if they could make a couple of batches of soup and freeze it! Or, as you say, sauces etc. One or two of my friends just turned up with meals a couple of times - wonderful!

I found the arm area was painful for 6 weeks due to nerve damge after they'd removed a sample of nodes. I just kept taking the pain-killers. Mine was also a bit worse than it should have been as I got an infection which involved a second op shortly after he first. I think most people don't have to take so many pain-killers. There was a day when suddenly the pain levels reduced and it was a relief as the pain was rather stinging unless I kept taking stuff.

I can't recall when I started driving again (shocking memory) but it was probably 3 weeks. Will check my diary. I'd suggest you ask a friend to do school run for at least 3 weeks if you normally do this. You can always stand down the arrangement if you're fit more quickly.

The op does knock you out a bit, so I did lie around on the sofa a lot for a couple of weeks, and just pottered about the house. A long distance friend came to stay for a few days which was great. You get your strength back gradually.

It is quite individual though. I did not have sentinel node business and I think its less invasive if you have that than the sampling process I had. The good thing however, was that although I did later have to have all nodes removed, this was not anything like as painful and I didn't need any painkillers afterwards at all! I was amazed. Also, it was my bad luck to get an infection as that's unusual.

Don't worry if you have to have wire-guided incision as that was straightforward and didn't hurt. Are you having this?

Are you possibly having chemo? You don't mention it. For me this was a much more significant process than the radiotherapy. Rads were straightforward and although I set up friends to give me lifts I felt a bit guilty as I didn't really feel I needed them. Towards the end I just drove myself for about 5 or 6 sessions. It was nice to have company for the others and again, people were very keen to help so it was fine. I had to drive 45 mins each way and thought I'd be completely whacked. I did get whacked out but this effect came after the sessions were all over as the effect continues for a number of weeks.

All in all, I'd suggest you take one step at a time, and don't worry too much about looking more than 2-3 weeks ahead. This journey varies and you will have to find your own route through, as different obstacles pop up when you might not expect them. This thread is great because for many issues, one of us has been there before and can help with questions.

For hospital - loose Pjs or nightie with fastening at the front, slippers, books, IPod, toiletries.

PS you've reminded me how I should be careful about my affected arm! I do wear gloves for gardening and dirty jobs but otherwise I carry on as normal. I do find it good to stretch out my arm with a few exercises or swimming, as it gets a bit tight. Nothing serious though.

Good luck.

Happy New year everyone. Let's hope it's a good one for us all

SR - with regard to the rubber gloves etc. - I will admit to being a bit careless sometimes - I'm better at giving out advice than following it!

O heck I feel enormous now. Need to cut back.

Did I tell you DH and I have just joined the Ramblers? We were easily the youngest there but joining in will make me walk that bit further each time. DH bought new boots yesterday and I got a new day back-pack plus walking poles! There'll be no stopping us now!

Am feeling a ittle jaded due to nice NY Eve party at Sil's with a big crowd of students and teenagers - good fun. Have just been out for a walk to clear the brain - then had a big slab of Christmas cake. I usually give half the cake to my DD but she was travelling by train this time and had huge amount of luggage so didn't feel I could add cake as well!!

ooh SR, you've reminded me we have half the Christmas cake somewhere amidst the debris. Brother and his family have just left, which was lovely if a bit much, as they arrived quite early this morning, after a very late night last night involving far too much fizzy stuff - Sainsburys were doing a cheap offer on champagne which we all spotted. SIL was shocked when she arrived today and spotted the empties..

RWU, I expect tales of madness from you, so will look forward with anticipation.

LJ, am not sure if this is useful at all, but thinking back, the stage you're at, is easily the hardest part. I think it's the uncertainty that does it, but just wanted to say that once you're through your op and have your pathology results, it really does get easier. Even Chemotherapy was easier than the early days for me. Not because I didn't feel ropey at times, but more because it was primarily a physical challenge rather than an emotional one. Cancer's a sod, but it's surprised me to find that it actually becomes a bit boring after a while. A slog to be got through mostly.

Also, you might have already told everybody, but if you haven't I'd say maybe take your time to do so. Everybody does things differently, but I kept it just to DH and a couple of close friends until after the op. It was only once we'd had the pathology results that I started to let people know. Once we knew more concrete facts I felt in control somehow, and able to let people in, whereas up until then, I'd been too upset to talk about it - apart from anything else it's exhausting worrying about how others are feeling and you'll need all your energy just to get through the operation. For us people not knowing stopped the phone constantly going too, so gave us a chance to be as normal as possible, which was a definite positive for our son.

Am on a bit of a ramble now, but have you told the boys yet? If not, I was given a tip (not sure where now), to try not to label yourself too clearly with breast cancer. The logic being that if your child tells another adult 'mum's got BC', even the most switched on adult will probably show alarm, so the child then picks up on that worry. Was maybe easier for us to pull off, as my son's a bit younger than your two - he was 5 when I was diagnosed - but it worked really, really well and meant he wasn't scared about me being in hospital or being ill from treatment; mostly he just found it all a bit boring, which was a very big plus for me in terms of getting through. I wanted to be honest with him, so we told him I had some rogue cells, which could make me ill if they weren't removed. That 1 in 9 women have them at some point in their lives (I think they're saying it's 1 in 8 now?). That I had to have an operation to remove them, then other treatments to make sure they'd gone which might make me feel ill for a while.

Sorry this is so long . It's only that I remember so clearly how hard I found it all. This thread is brilliant though - just having a run of other women who've been through it all, yet still talking about cake! I'll shut up now, honest, but Happy New Year to you. It might take a while, but it will be a good one, am sure.

Hi everyone,

Just thought I'd boast a bit - DH and I have done a 5.5 miles Ramblers walk today. It was a more interesting route than the first one, along lots of water-ways, and the weather was brighter, so it was good. AND I swam 22 lengths this morning.

So tomorrow I probably won't be able to move......

Hope everyone is OK.

Limejelly - on reflection I'm sorry I asked you about chemo as you won't know yet. I support Smee when she says the uncertainty of the early weeks is one of the hardest times. Once you've got your path results after the op, and you you get onto a treatment plan, it is definitely emotionally easier. Hope you're hanging in there OK for the time being.

hello my lovelies- have missed you and am now happily back from MILs - was v nice but I missed home Have to unpack and sort stuff so no time to read anything but will catch up v soon- hope all is well with everyone and a very happy new year too ! xxxxxx

SR - you are doing brilliantly with your rambles and the 22 lengths - well done.

Happy New Year MAS - lovely to see you back.

I've been shopping today for DS's birthday next week - why did I have my children so close to Christmas? - it's very inconvenient

Hope everyone else is having a good weekend.

Happy New Year everyone! I haven't posted on here very often because I don't take Tamoxifen,and I haven't need radiotherapy or chemo. ..So... I was diagnosed in 2007 with DCIS, had a mastectomy and reconstruction, and now go back to the hospital for horrible tests and MRI scans. I'm in the process of moving hospital, and I just hope that the new one will be less disorganised than the other one.

The past 4 months have been pretty awful, not knowing the results of the MRI and not knowing if the results had actually gone to the right place, and knowing that if I made an appointment, they were quite likely not to be there.(it has happened twice in the past year). I find these scans and things rather like going to a bad fortune teller. Not fun.

welcome silentcatastrophe - you don't have to be taking tamox. or have had chemo or rads to come on here

I've had a mastectomy - but no reconstruction so far, I know others on here have had DCIS, - so will know more about that than me.

Tests are horrible aren't they? - always a bit scary, I try to think of them in a positive light of they will pick it up early if I have a problem - but that's easier said than done, and as you say they are not fun.

Are you waiting for some results at the moment that the hospital have mislaid? if so that is awful,(apologies if I have got hold of the wrong end of the stick.

I had a phonecall on Friday to say that the results have arrived at my gp and to go in and talk about what happens next. They said that there was nothing to worry about or they would have called me in sooner. I hope that's ok then. I know what you mean about catching things early, but even so, I don't want to have ANYTHING!! Are you having reconstruction? I would have left it if they had advised it. 9 hours of operation!

I think that phone call sounds reassuring SC - but it will be good to get the appointment out of the way.

I haven't made up my mind on reconstruction yet - mainly because I have a friend who had problems with hers, so that makes me a bit nervous. I think I will have it eventually - just not yet. - When I had my mastectomy (2008) I just wanted them to take it all away - because I had lymph nodes involved and a fairly big tumour and I couldn't think beyond that at the time.

I've got another friend though who is thrilled with her reconstruction, and it does look really good - I can hardly tell the difference.

Hope everything goes well at your GP appointment

Hello all. Popping in to wish you all health and happiness in 2011 and to thank you for so much support during 2010.

Sparkle - so glad you got good news.

RWU - love your cakes! How do you cover the cake and the board so seamlessly? at stunning ring!

LimeJelly - no I don't look after my arm (had all the nodes removed last Feb). I am very vigilant about the skin being broken, scratched or punctured and carry around wipes, antiseptic cream and plasters all the time. That's as far as I go though. I've been rubbish about maintaining my physio and exercises and I need to keep them up as it does help with mobility etc otherwise I seize up a bit. Interesting that KK also says she has the same thing and she's 18 months on from me. As for not carrying stuff, well there's not much I can do to avoid it with DDs aged 5 & 6. I drove 8 days after my full node removal, and about 3 days after the sentinal clearance.

SC - sorry to see you on here. I remember you helped me out when I just found my lump (I was called BadTiming) just over a year ago. Glad the test results seem OK.

KK - I hope you're feeling a little less sore now. Take it easy. Lovely news about your DS.

SR - well done on all the walking and swimming! I'm easing myself back into running again. I'm worried about putting too much pressure on my heart whilst I'm having herceptin which is my excuse for taking it very gently!

MAS - about your neighbour. The same thing happened to my friend's adoptive mum. Sometimes I think we're the lucky ones.

Cakes - hope the New Years resolutions are going well. Looks like we have the same plans!

Worried - I think i replied on your other thread, but still sending you good wishes. Have you got an appointment date yet?

Is Cupcaked still on here? Hope you're OK .

Waves to Pennies ! Limejelly- sentinel node removal can leave you vulnerable to lymphoedema as you may only have a few nodes anyway - my bcn said that some people can have 20, some only a few - so,i think it's best to err on the side of caution. I had exercises to do but my mind just glazes over ast the sight of these things (diagrams etc~) I did use my arm as much as possible and did my usual things,cleaning,etc hoping that'd do..but sensible people would be wise to follow instructions.
Cold is clearing- dh had to drive all the way to Notts. as my nose and eyes were streaming.
hello again to silentcatastrophe too

Can I ask something ?? have been looking up splenectomy partly because it's ds's hospital check up next month and it's possible they will talk about removing his spleen. While researching I found a fair bit of stuff that strongly recommends people without spleens asking for a supply of emergency antiobiotics in case of severe infection and carrying a card with them and or having a medical alert bracelet thing - the man at the splenectomy trust urged me to take this seriously - am torn between thinking oh this is a bit over the top and maybe it's sensible ? I'd certainly get these things for ds if he had the op, but if i've survived this long without maybe i don't need them...wwyd ?

Hello and happy new year to Pennies

MAS - I think I would err on the side of caution if it were me regarding the medibands. -It won't do any harm and it might be useful

thanks KK -am seeing GP about tamox. on Thurs so might ask him what he thinks- it can do no harm as you say,and may be useful. I just didn't want to be thought of as neurotic or something !