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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:
smee · 21/10/2011 14:11

Phew, Dee.. Smile

Do we need flu jabs? MAS, I thought it was just if you were on treatment? Confused

Original poster
MaryAnnSingleton · 21/10/2011 14:47

no, only those having radiotherapy or chemotherapy- but I have no spleen so am immunity compromised or some such

OP posts:
smee · 21/10/2011 14:48

Ah that makes sense then. I did have one last year, but was still having treatment.

topsyturner · 21/10/2011 15:08

Am calmer now .
Have checked out the money saving experts websire (thanks for the link) and from what I have read I should be in with a good chance with my dispute claim . Tax credits people also said if I lose the dispute claim I can try to have the money owed either wiped totally or they will agree a reduced payment plan , as I have no job and not much hope of having one in the next couple of years .

I am going for my flu jab on Monday afternoon . Have my pre chemo bloods on Monday morning , then chemo on Wednesday . And that will be my last chemo for now .
Have ct scan booked for mid November , and then that will be repeated every 3 months .

Great news for mas and dee today !

pinkstarlight · 21/10/2011 15:09

topsy... how annoying thats actually happened to me twice payed the first lot back,then early last year i got sent a letter saying i owed 4 yes 4 grand as they had over payed me working tax credit but what really peed me off was that they was going back about 6 years and i had put a fresh claim in each year and it had never shown up before.when i rang was told if i didnt agree to pay off £50 a month they would just stop my working tax credit and recover it that way as a single mum i was quite upset but at least as it turned out it was from a time i was living with my x so they then said 2 grand that went down a storm with my x. but you know what they never did take any money off me and ive been naughty and not chased it up well actually bc got in the way but oddly ive heard nothing else.

smee...finish on tuesday,so not long now.

butterflies...that sounds really positive but still wise to get the biopseys done.

should be feeling happy that my treatment is nearly done but im actually feeling abandoned already,would have been quite nice to be followed up for all the crappy side effects that they have left me with like the daily diarrhea,bone aches and a hand thats twice the size of the other.got told today elevate my arm and to take some imodium and they will see me in a years time,.great huh

Driftwood999 · 21/10/2011 15:28

Thank you for your answers Mas, Pinkstarlight & Janechocchip & others. I'm going back to see gp later this afternoon as I am feeling so unwell with the stress and am worried about my bp. I am awake around 3am and cann't get back to sleep, it all crowds in on me. I'm currently obsessing about the sintinel node removal. Is anyone suffering from Lymphoedema after this? Please tell me so I can make an informed decision. Sorry for all having a rough time, and Topsy with the added hassle of the tax credits. My neice sent me a big special hug down the phone this morning and I want to pass it on so consider yourself hugged!

pinkstarlight · 21/10/2011 15:43

drift..i had a mastectomy and 13 lymph nodes removed (nodes all came back clear) im having a bit of bother with lympedema which so far just seems to be effecting my hand and wrist and not my arm.but to be fair its coming and going if i really step up the exercises it goes again its just yesterday i was very busy and out all day and so has flared up again and quite badly swollen today.i was warned i was at risk because i had a seroma and also have cording in my arm.

DeeScent · 21/10/2011 15:45

Hi Drift I guess we're all going to have slightly different experiences after the same procedure but this is what is happening to me atm.

I had a wle and sentinel node removal on Tuesday. I'm recovering pretty well from the ga, just feeling tired in the afternoons. The wound site has been a little bit uncomfortable but I only bothered to take some paracetamol yesterday because of the seroma that developed, which is a build up of fluid at the wound site which is not painful as such, more uncomfortable.

Advice from my bcn and people on this thread is to let nature take its course and the fluid will drain away eventually. If it's painful it can be aspirated but the site tends to refill and there is the possibility of introducing infection so I am sticking with the discomfort. This is only a tiny inconvenience compared with the need to check whether the cancer has spread to the lymph nodes and is utterly worth it.

A seroma is different to lymphodema though so perhaps someone else can advise.

IMO if they want to check the sentinel it's for a very, very good reason and any temp side effects are worth bearing.

Sorry for all the stress you're experiencing. Hopefully your gp will offer good advice to help you get through the anxiety.

pinkstarlight · 21/10/2011 15:47

its horrible dealing with the stress so its a very good idea to see your gp,i know myself and quite a few other ladies are on low dosage anti depressents just to help us get through the emotional roller coasta.

smee · 21/10/2011 16:15

Drift, if you're having sentinel node removal, I think you're at a lot less risk of lymphoedema than if you have full nodal clearance. The nodes are basically the filter which sort the fluid, so if you've still got most of yours there should be v.little risk of it iyswim.

Worth realising too that all women are different, so some have more nodes than others. I had total clearance (they take as many as they can see), and that meant 22, Pink had 13, but a friend of mine had only 8.

With full clearance your odds of getting Lymphoedema are approx 20% (or that's what they told me). It can also be caused by Rads, though I think they now say that's unusual. Maybe you should ask what your odds are of getting it with sentinel removal? Hope GP's helpful.

smee · 21/10/2011 16:26

Pink, are they really not going to see you for a whole year? Shock Is that all your team or just the Lymphoedema lot? Elation's hard when you're so wiped out. Give it time and you'll build back. I was told by BCN that a lot of women find it v.tough emotionally when they finish treatment, as there's time to reflect on what they've been through. It's akin to post traumatic shock syndrome at worst, so just you take care. x

janechocchip · 21/10/2011 16:31

Drift - let me give you the other side of this. All I have to show that I had a wle and snb on 1st September is one small curved line along the edge of my areola and a line in my armpit where the node was taken. Neither line shows when I am wearing a swimming costume. There is a dye stain under my boob which is fading fast and a slight lumpiness in the shape of my boob as a result of the op. I know everyone is different but I'm sure you can get through this.

pinkstarlight · 21/10/2011 17:08

smee...im not even being seen for lympedema just been told what it is and keep up the exercises,i swear you could have your leg hanging off in our rads department and they would still zap you then say next one please.so yes no follow up except booked in for a mamorgram in a years time and also a follow up with my surgeon booked for a years time.

smee · 21/10/2011 17:11

That's really astounding, Pink. Just shows how every region differs. I'd assumed it was the same everywhere. Shock

Original poster
MaryAnnSingleton · 21/10/2011 17:35

as smee says, with SNB there is much less of a risk of lymphoedema - some people have lots of lymph nodes,others have few- but they tend to just take 2 to test and that should leave a few to do the draining. Just be sensible about keeping the arm away from needles,scratches,cuts etc.
My SNB scar is a crescent under my arm, and like jane a curved scar- there is a dent though but only noticeable when naked !
Have been to friend's new house to take my girlie home- it's not at all like their old house,which was really lovely, feel sad for them not being at our end of town and in a less pretty house-though it's bigger.

OP posts:
KurriKurri · 21/10/2011 18:14

Hello everyone, - I've been trying to catch up, - have been out all day yesterday and today, - and there's too many posts - I can't cope Grin

lovely to hear some people have had good news - Butterflies, you must be relieved Smile, and well done MAS on normal smear.

14k - glad your appointment has been hurried along, and Drift - I agree with he others, definitely see your GP and get something to help you with the stress - you need to be able to get some sleep. You are bound to feel very stressed at the moment, - I remember feeling just as you describe, and I'm all for whatever gets you through while you're waiting.

topsy - Sad about the tax, I hope Smee friend's link is useful, and you can challenge it.

had my hair cut today, - my usual spiky style 'spikes are good' said my hairdresser as she jammed more waxy stuff into my hair Grin

love to all xx

janechocchip · 21/10/2011 18:30

Hi kk
nice to see you! Don't feel you have to read all the posts :) Nice to hear about your spiky haircut. Mum had her hair cut by a hairdresser yesterday and it makes such a difference :)

janechocchip · 21/10/2011 18:35

spoiling my tea, with 65% ark choc from aldi. Anyone want a square?

janechocchip · 21/10/2011 18:37

I meant dark

smee · 21/10/2011 18:47

Friday night, so Wine being chilled here. Wishing you all similar treats and good cheer. Smile

Driftwood999 · 21/10/2011 19:03

DeeScent - glad to hear you are progressing well, what a relief it must be to have that first hurdle out of the way. This is helping and thanks for the replies. It does help me to know stats/ "chances" Smee, so thanks for that. I asked the surgeon what the chances are and he fudged it, "it's a risk", not common but not unheard of either! I went to gp this pm and he was wonderful about the stress and anxiety. Gave lots of chat and I have a beta blocker to take when and if. He also recommended whiskey in the right dosage as being both effecatious and theraputic, such humanity bless him! We talked about the snb and he is encouraging me to have it. I know though that if it turns out to be positive I could not go through a total clearance but at least I would have a chance with some therapy. Yesterday I was contemplating not having snb at all. It's so hard to explain it even to myself.

DeeScent · 21/10/2011 19:37

Drift I think all the ladies would agree that the best thing to do is try to take one hurdle at a time - perhaps easier said than done sometimes, but to worry about possible side effects further along the line can be overwhelming.

Glad you had a productive chat with your gp who sounds very down to earth about the "self-medication" a la alcohol Wink. And if you can get a reasonable night's sleep that's worth its weight in gold to help you make less emotionally-charged decisions - dh is on the Nytol atm - works quite well.

I find out in a couple of weeks time if I'll need a node clearance.

Dh popped out to Marks to pick up a lovely roomy sports bra for me, one size up from normal and no seams - feels wonderfully comfortable.

DeeScent · 21/10/2011 19:40

Auick question: when I have the rads do they blast the site where the tumour was and margins (assuming no nodal involvement) or do they do the whole boob/armpit?

topsyturner · 21/10/2011 19:43

Fat boy snacks in the extreme here .
MacDonalds !
There are times when only a chocolate thick shape will cut it Grin

Been invited to neighbours later for wine and chicken wings . Will see if I can stay awake for long enough .

What's the plans for the weekend ?
DD has a party on Sunday , and us mums have started a tradition of going out for lunch or coffee and buns whilst the party goes on .

sandripples · 21/10/2011 19:44

Hi Drift - yes definitely better to take one step at a time - its hard at first but you can sort of train yourself after the first few weeks of shock. Its definitely better to deal with the bits you know, rather than speculating.