*TAMOXIGANG* All the fours...44!

[GoodbyeRubyTuesday]

Apologies for the bingo reference, couldn't think of a witty title but the other thread is very nearly full.

In honour of our new thread I have piled extra apple pudding on the trolley so tuck in :)

Pigeons, love the sound of your hippy-dippy campus.

Handbags, grr re drain.
And Ruby, I second the suggestion to go see the disability expert at the Uni. Cancer counts as a disability and they have to make reasonable adjustments for you.

Pigeons, I wouldn't be shouting for religious leaders to come and join you in the shower room; some of my lot might well take you up on it

Thank you all, especially shooting I've had a look at some online stuff already but will take a look around. Also already got a disability advisor and have been assigned a mentor who I'm meeting next week. I really just need someone to say if you can't finish your dissertation by X date we can give you so many extra weeks or we can delay it until summer or whatever. Your hippy campus sounds fab :)

handbags grr at drain :(

Hi all,

Interesting to read all your comments on my current preoccupation. I'm off to see bcn at 2pm to hopefully get a bit of a pre-op morale boost and a dose of perspective, although the lack of papal visitation has also helped with that

I guess I just didn't get the reasoning attached to needing chemo when SLNB was clear, but the comments amber made upthread make sense, especially when supplemented with others' experiences. Thanks for your comforting comments HND. Maybe that will be me, though I'm thinking maybe not after the surgeon's comments yesterday. We shall see.

If chemo is suggested, I will def go with that as I really want to be here also, whatever it takes. I do struggle with the drip feed of info and the constant need to adjust expectations, but given that I generally have an emotional meltdown whenever I have something else to cope with, I can understand the hcps being cautious about what they say. I don't google much so rely on them (and you lot ) for information. It's a tricky line to walk on both sides.

I sometimes think that I'm not psychologically strong enough to deal with all of this. I was already at a low ebb, having lost my mum in April after being her carer for many months (some 'hands on', but lots of organising/liaising re care and just being responsible for her), working fulltime in a job promotion, and building up to DD leaving for uni. Obviously was pleased about DD, but miss her terribly, though I have been glad she hasn't been around to pick up on my upset the last few weeks. I feel like I'm just forcing myself to get through every day...think it's my turn for a pity party today...

It would be helpful to get the lowdown on what it's like to have a mx and wake up to a new boob, if anyone can share that? And what to expect over the following few days/weeks. At the moment I don't even know how long I might be in hospital. What will it look like? I'm already worrying about looking at it for the first time. Could also do with some practical tips on underwear/night & day clothes, and how to stay clean when I can't get it wet for ??how long?? Also, did you do/are you still doing arm/shoulder exercises?

Ruby so sorry that you are not getting the guidance you need. I would be very cross if it was my DD! You sound as if you know exactly what you need, and that it is completely reasonable. I would have thought the disability advisor would be the person to help you negotiate that. Grr at the 'depressed' comment also. Hope you get some progress soon.

I have a work colleague/friend visiting this afternoon so off to pick her up from the station in a bit, then seeing bcn. Hope they both have lots of tissues handy.

Sorry if this has been very boring to read..

Ruby i am so cross for you. You are amazing even attempting a dissertation so soon after chemo (and major illness) they should be going out of their way to help you. It's no defence but unless you have been through chemo i think it hard to understand how fried your brain actually gets - hopefuly you'll find someone on your side soon.
I am sturggling to do work tasks that I have done for years so something new is a huge challenge.

Marshy - I had mx and tissue expander insertion put in - so not the same as waking up to a new boob but let me know if you want any more info on that.

And now my news..... onc called and said that I do not need Rads (see he is lovely!!) so it's full steam ahead with reconstruction planning for me . I shall get an appt with my surgeon next month to discuss options. yippee..

Marshy hope you had a good chat with your friend and that your bcn was helpful I haven't had a mx so can't help on that side

Kitkat that's great ! You can really start planning now

Just seem my mums neighbour who said I look ' quite well' does that mean I look rubbish ?

kitkat that's great news re rads :)

ruby - great advice already - also is there anyone from the student union who could help ?- as has already been said they have to make reasonable adjustments.

to everyone else and throws some 5 cup fruit cake on the trolley. Sorry I have long since given up trying to keep up with everyone's updates on the thread, my post-chemo brain just can't cope

still no sign of a papal visit here, phew :)

Malt - i think that mean she thought you would look s**t but you don't

for kitkat. Yay for no rads and a plan!

Ruby, that sounds woeful. Isn't there anyone else at the university you can go to? Student Services or some such like who can be your advocate/ help you sort it.

Marshy, so you're not having nodes removed, but are having implant? I think that's right isn't it? Are you keeping nipple, or letting them take that? That's quite a shock when you see it's not there. The actual op for mastectomy is genuinely not too bad. I might have been lucky, but I didn't need much pain relief. You'll wake with a drain or two in (long tube draining fluid from the wound into a sports type bottle, yuk!), and you'll have bandages across the breast so it's hard to see. It's a bit sore, but really not too bad. I'd guess you might only be in hospital overnight. Take a bag for the drain - something you can sling across and which sits at waist level, so the drain can go in where your PJ top ends iyswim. Wear button up pj's, as that makes it easier for them to examine you/ check the wound. Take wipes as it's hard to wash and they make you feel better, sore throat sweets as they often put a tube down your throat during the op and that can make it sore, a little portable fan in case the ward's baking hot, zip up sweat top or dressing gown to keep warm in case it's not and some cosy socks just because they're nice! Flip flops not slippers, as ward toilets can be moist (!). An iPod loaded up with things you can shut the ward out with. Ear plugs. Some nice snacks for when you feel like it - I took nuts, fruit, dried apricots and chocolate! Can't think what else, but will add if I remember anything. Ask anything you want though and I'll try and remember.

I'll take it that way then Kitkat how was the chemo did you sleep through it ?

ruby I don't think that your tutor could activate the extension to your deadlines etc. without a letter from Counsellor /GP/disability adviser so in a way it doesn't matter what your tutor thinks is the problem, it is the job of the experts to do the whys and wherefores. It is the practical help they should be giving you

And a dissertation is a formidable exercise for anyone, a lot of undergraduates approach it thinking it is going to be straightforward and then get caught in all the elephants traps , not being focused enough, going off on tangents, not leaving enough time for all the reiterations of their argument and the tedious formatting and referencing etc etc. All those other students looking calm and confident will be frazzled in due course, if you go into it with a plan it will not just feel more doable as you can knock off a step at a time but it will take less time too (says the person who wrote the last 4000 words of her Master's diss overnight in the spare bedroom kept awake by diet coke and the wasps from the nest we didn't realise was above the window battering on the window to get in all night, it was like a Hitchcock film. It went to my old work for binding at 9 and was handed in at 4!)

Malt - had a really nice nurse so chatted through the pre-meds stuff but was asleep once the chemo started. Was woken by call from onc but chemo was just finishing up so timing was good - I don't actually feel so tired today.
I've already spoken to my BCN and have booked a double appt with the surgeon for 5th November. BCN said I will need to see him at least twice as they like to make sure you have thinking time even if you think you know what you want.
Also the chemo nurse this morning (who knows the surgeon ) said he will do both breasts and a nipple all in 1 Op - will have to confirm that with him though.

Hi marshy ....waking up to a new boob ..... I guess it all depends on the person but I was not sorry to get rid of the DCIS ridden boob and to have a new smaller one. I lost my nipple and its amazing how soon you get used to it not being there. I was adamant that I would want a new one reconstructing, but I'm not too bothered at the moment - think it will be tagged onto the end of one of my procedures next year. Seeing my new breast was a step forward in my journey back to normality and was not a negative thing to me.

Although I had LD flap reconstruction, the stiches and wound care I would imagine to be the same. I was allowed to shower my new boob after a few days as the stitches were all internal, I had a dry dressing taped over the scar and there was very little pain from it. Taking it very easy over the days and weeks after surgery is VERY advisable though to heal yourself both inside and out.

They tend to let you out a lot sooner on that side of the water - I have never known anyone here be discharged with a drain still in - I had three drains and carried them round in a pretty gift bag.

The physio and BCN came round to show us the exercises and on our ward, we all did them together in our ward bay (4 of us) so we kept each other going and made sure we did them (there was a bossy lady I named Senorita Bouquet who made us all do them every few hours !!!)

I wore very soft and stretchy flowy pyjamas and soft comfy knickers. I wasnt able to wear any sort of bra (I had a foot long back scar too). I asked people to bring me fruit into hospital as it was lovely and refreshing, though I was in there for a very long time because of the leeches and IV antibiotics. A face spritz was nice and also snacks and fruity drinks.

Hope that helps a bit

Thank you all for your loveliness and support. I've had an email back from my project supervisor so I'm seeing her tomorrow and the lecturer in charge of my course who I'm seeing on Friday - she sounds like she has lots of ideas to help me so that's good. I'm already feeling much less stressed about it all. I was mostly worried about going to my meeting with my supervisor next week and having to admit I hadn't done many of the things I was meant to so now she knows I'm struggling a bit I think she will understand and that's a bit relief. So now I have started to do a few small tasks :) that's the way to do it anyway, I know, but I've had to break them down into tiny ones so they are definitely achievable, then I can tick a few things off which is boosting my confidence.

marshy no experience of your op but I did spend a week in hospital after mine. I'd recommend a notebook to write down any questions you think of as if you're anything like me you won't remember them when the doctors come round, also write down their answers as you might be a bit woozy from the GA and the drugs. A dressing gown as they will probably force you out of bed and make you sit in a chair for a while. Thin pyjamas as it can get quite hot in hospital, but some layers so you can wrap up if you are cold. Ear plugs if you use them as hospital is very noisy. MP3 player or CD player and ear phones. Face wipes, hand cream, lip balm.

shooting at your all-nighter with the wasps' nest!

So much going on today.

Saw my favourite onc today and lump has considerably reduced. Chemo fine but ended up being there all day as too many patients due to booking cock up. Had v funny afternoon joking and chatting with other patients so all bearable.

Hi, I've not caught up on the new thread properly but I just wanted to mention to Ruby that you are disabled under the Equality Act (which I am sure you know as you have a disability adviser) and I am pretty sure that the university is obliged to make reasonable adjustments to enable you to carry on your studies. Asking for extended time period for your dissertation and giving you assistance is reasonable. Just to be clear, you are not seeking any "favours" and you don't need to be "depressed" !

When I had my bowel operation in January 2012 my daughter could not face going back to uni initially so she was allowed to defer her January exams to the summer. pigeons is right, it is not your tutors call but once you get something from your counsellor or disability adviser (which shouldn't be a problem) I am sure you won't have any problems coming to an arrangement about your work deadlines including deferrals if necessary.

Hello again,

thanks to ruby, HND and smee for hints and tips re hospital stay. Loads of good suggestions. I'm going to make a list of them and do a bit of shopping so i'm fully equipped.

Smee - did you have immediate recon? Yes, I am keeping nodes, losing nipple and having implant.

HND - I will be glad to lose the breast now as I'm so fed up of the misery it's causing me, but still apprehensive about seeing the new one, especially with no nipple, but I guess it will help to think about it as the road to recovery. Group exercises sound entertaining! Were you given any indication before your op as to what they thought the outcome would be? Hope you don't mind me being so nosy

I saw bcn and she was very kind. I had a bit of a moan about the appt with the surgeon, though tried to keep it to how I felt rather than anything about her. Bcn kept reiterating the positive, understood my fears and answered my questions. Interpretation of the histology report does sound complex, so I can see why they don't want to second guess it without the facts in front of them.

Was lovely to see friend also - she is a real tonic.

Still feeling weepy and lethargic. Have hardly eaten today. Armpit still sore. I think there is some fluid in there. It felt better yesterday after fluid was syphoned off, but I think it may have returned. Also have some 'cording' I think. Will try to do some exercises later. I know I will feel better than I do now. Just have to adjust and let this pass.

Kitkat - I'm so pleased that you have had good news today. The end is in sight for you and I bet that prospect will make the intervening weeks easier to cope with.

Ruby - glad uni people are listening to you

Best wishes to all xx

Marshy not sure if its been said but add a comfortable eye mask to go with ear-plugs as hospitals are never totally dark and the combination of the two will mean you can sleep when ever you feel you need to.
Also phone charger! X

Hi all, some new names on here since I was last on the board about 2 years ago. I had some cysts and a benign papilloma removed in 2011 and you were all super kind and supportive, for which I am still grateful.

I had my annual mammogram last week, called back for an ultrasound today. There was a small black oval on the screen with a defined edge - my previous breast surgeon told me that cysts have fuzzy edges - so am once again in a flat spin, although this is in the same location as previous cysts that were drained. The images will go to a panel of doctors, then I will either get an all clear or biopsy. To be honest I quite fancy the biopsy to be 1000% sure .... but the wait is killing me.

I just turned 40 this year, have 2 small kids, DH is away on business and moved country this summer so literally know no-one very well. On the upside, I live round the corner from one of the best medical and cancer facilities in the USA and have full insurance.

My mum died of bc and my gran had it too, I feel that somehow this is my destiny (does that sound weird) and kind of want to get it out of the way. My old surgeon advised regular checks and was very into minimal surgery and invasion but I'm wondering if "doing an Angelina" is worth the peace of mind. I find even the annual check ups super stressful.

Take care all x

Oh butterflies, what a scare. Hope it turns out t be banjo etching non sinister. You must feel very alone ATM.
I have decided on BMX as I never want to be in this situation again. I also keep hearing f women getting it again and don't want to live with it hanging over me.

As I sad, hope t turns out to be nothing but whatever, you have great medical care avail.

Marsy - I have an expander in and no nipple - it hasn't bothered me at all - infact none of the mx and new breast has - and I'm sure that's because I was so pleased to get rid of the cancer and the discomfort from the lump.
I've been surprised at how little it has affected me - especially as I had the mx done at short notice - I did no research and had not looked at any pictures. Touching it is wierd as it has no feeling and is rock hard but I have to moisturise it twice a day so I've got over that now. But I guess it is very individual and it sounds to me like you are still getting over your current surgery and GA so that will have a bearing on how you feel.
Recovery wise I found it very easy - had Op on Friday afternoon and was in my own PJs and walking around on Saturday morning. Was home on sunday but had drain in for 2 more days. I stayed in on Monday but went out for a walk and lunch on Tuesday (with drain). And much to everyones amusement was putting washing on the line on the Monday (that's good exercise for your arm)!!

Marshy try and eat something even if it's just a cuppa and a biscuit or a piece of toast it will make you feel better
Butterflies I will keep my fingers crossed for you that it turns out to be nothing

Kids are home tomorrow have really missed them tried to have a glass of wine tonight but it tasted bleurgh, managed to have a nice piece of banoffi pie though !

Malt - one off the foods that still tastes exactly the same for me is chocolate - that's wierd isn't it? Still I'm putting up with it and eating loads of it.

Rather more seriously I'm getting worried about my craving for Lemonade and Lime - of which I'm drinking loads (sugar free) - at least 2 litres every day.

My glucose was sky high again today and uric acid was down (they're related apparentely). But I can't work out if I'm drinking because I'm thirsty or because I have a craving for it. Anyhow nurse said none of the chemos would be stoppped because of it - although I'm already on half the usual dose of steroids.

Handbags - thanks for that, will add to the list.

Kitkat - your positivity has given me a lift. Have just done my arm exercises and have managed all of them even though pulling quite a lot in my arm. Was at the gym 2 or 3 times a week before this started. Nice to stretch again. Thanks for comments re the touch thing. Have you been prescribed a moisturizer or is it one of your own? How soon did you start doing that. My skin is dry anyway and even more so on the affected breast, which is a bit odd.

Malt - thanks for your concern Will eat soon and fortunately for me wine tastes good at the moment so may have a little later. Haven't felt like drinking much lately. I bet you can't wait to see your dc. The first hug i gave my dd at the weekend was the best thing.

Butterflies - fingers crossed for you. Waiting is not nice.

Hope really is ok. Haven't seen her around for a while.

Off to try to chill out for a bit. See you all tomorrow

I am using Palmers cocoa butter (as used when pg and worked well) alternated with Bio Oil. I'm only doing it as BCN said although scar is great i should moisturise twice a day to keep it great. She said any nice moisturisor would do.

I only started about 5 weeks after Op when expansion was complete but wish I had done it sooner as it looks like i have some small stretch marks (not sure if that's what they are) which wouldn't be surprising as the breast was expanded quickly.

I'm sure it's obvious but i had to sleep on my back for a while - that was the worst part for me. Then i gradually managed to get to my side and now I'm back sleeping on my front .