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Original poster

**t*a*m*o*x*i*f*e*n** number 14

985 replies

MaryAnnSingleton · 05/10/2011 18:19

here we go !

OP posts:
topsyturner · 13/10/2011 22:29

Anybody else drunk ?
I am well on my way Grin

Someone needs to take my debit card off me as I am this close to buying expensive shoes .

I have just posted my first ever post on style and beauty to ask the mavens whether Irregular choice shoes are quirky or tacky ?
What do you all think ?
Have decided that life is too short to play it safe !

< topsy drifts off to the kitchen to search for Fat Boy Snacks >

Iamseeingstars · 13/10/2011 22:44

I have used Google a lot and learnt to filter what is relevent and what isnt. Have found some excellent sites.
Also use Google to analyse all my different blood results. Had a test recently and all the results were showing negative to what they were testing for, and then hospital rang and confirmed it was negative, so felt very pleased with myself. I feel in control because I am understanding what all the high and low results mean and that many are because of my condition. I can also now see when there is a problem with a result because of info gathering on google.

So, used wisely, it can be helpful. But there is a lot of mis-information and many sites paint really bleak pictures.

Use recommended sites from other people.

Statistics should be ignored. ie my statistics are 4 out of 5 will die, but I could be the 1 out of 5 that will survive.
Its like when you test for downs, you are given odds like you have a 30% chance of having a ds child, but you could be one of those 70%. My specialist had to do the statistics bit because they have to, but everyone is invididual and you cant make comparisions.

DeeScent · 13/10/2011 22:46

Would you be able to tell us the sites you found useful please or are they very specific to your particular dx?

Original poster
MaryAnnSingleton · 13/10/2011 23:04

Iamseeingstars has a good point about not comparing one's own radiotherapy with other people's- it's all tailored to each person -so the length of time as in how long each dose is and how many weeks can vary.Some radiotherapy centres do 3 weeks of larger blasts I believe (am thinking this was my case) And it depends on where your tumour was too.
drift - if you're having a sentinel node biopsy they will only take a couple of nodes to test,therefore less risk of lymphoedema and no drains. The scar is a crescent under the arm but you will probably find that the underarm area remains numb as some nerves are damaged - be careful when shaving.

OP posts:
Original poster
MaryAnnSingleton · 13/10/2011 23:05

Deescent I used the Breast Cancer Care website -seems v good to me. Avoid googling if you can (though I did !)

OP posts:
forpitysake · 13/10/2011 23:09

I'm not very computer-savvy but I know enough to make sure I should only look at .org.uk sites as the info should be pretty up to date and check to make sure they are accurate.

I agree with you stars about statistics. They only show a trend, don't they? Not absolute facts/predictions. They can be presented any way you like.

I've got confused with what I might have based on the internet which I guess is why you shouldn't look Grin.

The radiographer had said something about a fibroadenoma and the nurse was reassuring me that if she was right, then it wasn't much (compared to what it could be) to worry about.

All the info I have seen says that it is a moveable, rubbery mass. That's not what mine is like, so either mine is just a bit different to the 'norm' or I have something else instead. My ultrasound image looked like a black 'kids cloud' drawing and it looked big. I can't find an image that might look like that and the lump feels hard not rubbery Confused

I only really started looking at stuff so I would understand what the surgeon will be talking about when I see her. I can't think of anything worse than not understanding the answers to any questions you ask - not empowering! If she comes out with names/words/treatments etc then at least I will have some idea.

forpitysake · 13/10/2011 23:10

PM you mas Grin

smee · 13/10/2011 23:20

DH is a hero, as he got me a new drain. I have fortified him with wine and he's happily hissing at Question Time, so all's well in Smee's house.

forpitysake, a fibrodenoma would be a fantastic result as it's a benign tumour. Fingers crossed that's what it is. If it is, I'm guessing you might still need an op to remove it, but still not cancer is obviously good.

Topsy, I hope you found fbs. I have some Green & Black calling me, so had better go before DH scoffs it all. Night all. zzz. Smile

topsyturner · 13/10/2011 23:38

Well done Mr Smee .
And Mrs Smee , top tip , keep drain bottle in across body bag and make sure you put a cardy or dressing gown on over the top of that .
< wise nods from a woman who regularly rips out her syringe driver every 3 weeks much to the despair of the district nurses , damn you door handles !>

Right , have drunk almost an entire bottle of wine , deforrested the kitchen of anything remotely edible , failed to decipher via the style and beauty mavens whether I am quirky or tacky .
So all that remains for me is to pass out in a drunkan stupor go upstairs to bed .

Night all , and hope all the ladies who are worrying get a decent nights sleep .

Iamseeingstars · 14/10/2011 00:11

HI Descent
I use the Leukemia site, wilkipedia to get a basic understanding and then various American medical sites that are written in plain english. But these tend to be for when searching about blood results.
I now ignore all the life threatening, dead within a year type comments that I keep reading. Whatever happens will happen.

janechocchip · 14/10/2011 00:46

driftwood. I saw my surgeon two weeks after my wle and snb and asked the swimming question. I was healing well and he said I could swim. I did have a small build up of fluid below my sentinel node scar but he said that would reabsorb and it has. I've been swimming about three times a week since mid September and started with jusr 10 lengths i think but I'm now back to my usual 30+ I remember saying on here that it was a mistake to dive in that first time. I'm ok diving in now op was beginning of September.

janechocchip · 14/10/2011 00:58

It's been a busy evening on here. I still have not had my tea. Bit of a disaster tonight. My lunch earlier didn't happen as my auntie did not turn up. As i was on bus went home and then as she didn't answer phone drove over to her house at 5- just popping out for an hour I said... Got there and curtains closed and light on.. no answer to bell. but shouted through letter box and heard her. Anyway long story short, spent 6 hours at hospital and left her tucked up on stroke ward by midnight. :(

DeeScent · 14/10/2011 06:09

Jane, that's Shock about your auntie. Well done for pursuing it until you found out what was happening. Poor lady - hope she recovers quickly. Bit of a shock for you?

DeeScent · 14/10/2011 06:15

I've got a day off today from appts. Smile

Although the care has been brilliant, most of the appts have run (sometimes very) late because they are not rushing ladies and are giving them plenty of time to talk, but I find waiting in the waiting room very tense-making.

Will walk into town for some much neglected exercise and stock up on some magazines for the hospital stay on Tuesday.

DD is off to a concert and sleep-over tonight, so I won't have another evening pretending everything is normal. Will tell her about bc and operation on Saturday afternoon. Sad

janechocchip · 14/10/2011 07:10

Cannot be time to get up! Cat thinks it is! Enjoy your day off Dee :)

Original poster
MaryAnnSingleton · 14/10/2011 07:58

jane trying to find you on fb- have located forpitysake (I hope)and sent a request - can you send a clue jane ?
Well done for getting to your aunt- how really alarming though...hope she makes a swift recovery.
Am having school friends to lunch today- exciting but scary -will stay calm I hope.
driftwood -how are you doing today ?

OP posts:
topsyturner · 14/10/2011 08:22

Morning All

Am away out for the day today , so will catch up later with you all .

jane I hope your Aunt is ok and that you are not too traumatised after yesterday . Good job she had you checking up on her !

mas enjoy your lunch today and save me some orange polenta cake please .

Everybody else , please have a lovely Friday . That's an order !
Apologies for last nights drunkan ramblings , surprisingly , not feeling too bad this morning !

janechocchip · 14/10/2011 08:37

Auntie had stroke a few days ago. Apparently she had a little one and fell over in town but after nice people gave her a cup of tea she was ok to eat her dinner and get bus home... Aargh. wish she had called the doctor then. Or even a homeopath. she doesn't do doctors, hasn't seen one for about 15 years. Most old ladies rattle, don't they? Can't believe how different she is to my mum sometimes. She is 78 next month, my mum is 86. If I ever have a stroke, I will not be telling the doctors that I only take homeopathic medicine while I am in A and E... Shock

Original poster
MaryAnnSingleton · 14/10/2011 08:52

me either !
Have a good day too topsy- see you later at Wine time. Don't think there'll be Wine at lunch,though am chilling a bottle as both have to drive and one is a magistrate,so she has to be above the law ! Grin
Am pleased to have found jane and hope forpitysake has found my friend request.

OP posts:
smee · 14/10/2011 10:48

Grin at the idea of MAS corrupting a magistrate.

Dee, keep busy. You'll feel so much better once you've told DD. Very, very hard to do, but kids usually cope better than we do. Easy to say I know. Will be thinking of you tomorrow.

Jane your poor aunt. She sounds like a feisty sort of soul though, which should sound her in good stead. Must have been exhausting to go through all that.

Waving to all others. I have Brew, no biscuits, a stack of work and am still hooked up to my drain. Ho hum...

KurriKurri · 14/10/2011 10:57

topsy have a lovely day (expect you've left now!)

jane, so sorry about your auntie - thank goodness you followed your instinct and checked on her. I hope she makes a good recovery.

Dee - how old is your DD? mine was 18 when I was DX, and actually coped much better than I had anticipated when I told her (she'd guessed something was wrong and there was part of her that was relieved when she knew the facts), I think kids often deal with thing better than we think they will Smile

tip for hospital (which you've probably thought of) take night wear that buttons down the front - makes life much easier when they examine you.

MAS - have a lovely lunch and catch up with your friends, that orange polenta cake sounds very tempting.

DD's compliment of the day, she gave me a hug when she got up and said 'Hmm what are you wearing? - you smell semi-OK' Grin cheeky devil.

DeeScent · 14/10/2011 11:07

Grin @"smelling semi-ok"! dd is 13 (and says similar damning-with-faint-praise comments like that).

She will probably be okay (so long as her life trundles on pretty much as usual!) I suppose I'm concerned that some of her friends might get a bit drama-queeny about it with anecdotes about more serious cases than mine and dd will freak. But that's just speculation and hopefully that wouldn't happen.

I suppose also, though I can talk v positively about the situation as it stands, the future is actually unknown. but I could fall under the wheels of a bus on my walk into town anyway so there's no point any of us worrying about the future!

DeeScent · 14/10/2011 11:11

Yes, seeing a comment on the last thread about front-buttoning tops I went and bought some v tasteful M&S purple checked pjs (get me) for the hospital, although as I hope to be a day case it might be just the gown then tracksuit type thing to go home in.

smee · 14/10/2011 11:14

Dee, do you know if you're having a drain? Okay, so I'm obsessed with mine atm, but it's worth taking a bag that you can sling across you to carry it. The drain tube comes out from the wound and is long, so you can have it under pyjama top/ shirt, it heads into a sports size bottle, which can sit in a bag at waist height discretely. They're a bit unsightly as they're clear plastic (have to be so they can see how much is in there), but obviously it's a bit yuk not to mention cumbersome if you have to lug it round in your hand. Nobody told me last year when I had my first op, and when I asked on the ward for a bag, all they could find was a Tesco carrier bag..!!

Grin at your DD, Kurri. What's she up to atm? Did she get a job, I've lost track.

pranma · 14/10/2011 11:33

Deescent I used Breast Cancer Care which I have just left and bcpals which I havent!I doubt I ever will-it's like a smaller version of mumsnet for bc sufferers-very friendly and extremely private.
For prognosis all the sites are a bit out of date as by definition 10 year survival rates are based on those dx 10 years ago and treatments have moved on a great deal.