Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

just dropping in to say a bit about capecitabine to lilymaid - waving generally all round - I've been on it for about 16 months and it has been good for me,reducing lung mets -so my disease is stable at the moment, I think that if it works then it's very good. I take it twice a day for 2 weeks,with a week's rest and every 3rd week see onc. and have bloods taken. There are side effects like nausea and diarrhoea but these are manageable -the worst for me is the hand and foot thing where my hands and feet are permanently tingly,dry and prickly. Ask for pyridoxine (vit B) which is meant to help and keep moisturised - I'm now using sudocrem ! My dosage has been gradually reduced over the months to try to combat the sore hands and feet. Really hope you tolerate it well.. as for infection risks- I do swim (there was a bit of concern by the chemo nurses ) but onc. and I felt that the benefits of swimming outweighed the small risk of infection (also my bloods are always fine). Hope that helps and reassures...do ask me if you need to know anything else...

Hi MAS
Nice to see you here. Thanks for the good news on Capecitabine and how you have got on with it. So it looks as though I shall be swapping the bone ache of the hormone pill for palmar plantar! I shall no doubt report back as to which is worse.

Mom of two
Thank you so much.
Being ignored by nurses tonight a as dared to stand my ground over something. Jeepers!

Would complain tomorrow but if they're then here another night I'd be petrified.

Hello ladies, another incoming noob so forgive me for crashing existing conversations. Have read first 10 pages or so, will go back and catch up.

Had my Bx before xmas, diagnosed with grade 2 IDC on 2 January, ER+, HER2-. Had WLE just over 3 weeks ago, have started tamoxifen and have a radiotherapy planning appointment next week. Just so you know where I am with things.

All early signs good, had 2 nodes removed and they were clear.

What I'm struggling with is that I was diagnosed a week before my 43rd bday and my mother died of BC at 43. Bang on cue for diagnosis, knew all my life that this would happen.

Emotionally it's knocked me for six. First person I told was my best mate (no family in the city I live in and I needed someone). Kind of regretting telling her now - she is quite indiscreet but I needed her there. Spent bday at her house recovering from surgery. 2 days postop/dreaded bday and I heard a song on the radio and I blubbed, prob crashing a bit from the GA and YES feeling scared. She looked at me like I was mental and told me that it's all about attitude.

I'm also very pissed off that I told her I was worried about losing a nipple and the next time I saw her (after first dressing change) she shouted across the room in front of another friend, 'So, have you still got a nipple?' She was being thoughtless rather than mean.

How do I move forward with this? I don't want to lose her but I don't want to be told I'm doing cancer wrong either. In the meantime, I'm doing the adult thing and completely avoiding her ;)

Problem, I'm so sorry you're going through this. Your friend clearly doesn't know how to handle this. She's in a fantastically important role but isn't able to be there as you'd naturally like and need her to be. Do you have any other friends? I've made a secret Fb group made up of people I hoped would care but doubted would. I can just type stuff on there and get support that way. People know what's going on and don't need to shout / fire questions at me. I ask for visitors too. That doesn't always work but you'd b surprised.
If if appeals (ease of communicating like this) I'd urge you to do it too. I've been so touched by people on there visiting when hearing I'm down, saying thjngs to pick me up. I'm scared as what I have is rare and happening to me. But I feel like MN and my Fb group is literally keeping me out of a very big hole I fell into a few weeks ago. But by bit, with this support n sharing, I'm able to state my fears and face them. Without shouting about them. Lol
She sounds like she can't / doesn't handle it well. Insensitive or subconsciously frightened by it.
I can't staaaaaand the ' attitude and positive' talk. Or the 'it'll all be fine' thing. So I write to rules to bam those phrases on my group. Lol
If people break the rules I try to remember that they just don't know and fortunately haven't been in this situation.
Xxx

Hi Goodness, thanks for the reply - I've just been catching up with the thread and know that I'm not going mad.

Yep, she just doesn't understand and I was surprised at the reaction. Anyway, I do love her.

I think I'll carry on reading through the thread and vent here if I need to. I've not told many people in RL, just family and a couple of close friends.

I'm sorry to heear about your 'very big hole' - and I wish you lots of love and happiness xxx

Thank you. I never did fall into it, thankfully. Within a fee days, I grabbed all hands by pulling them out of people's pockets. Good that you're close and fond of her. I hope that things pan out well for you and will try to keep up with the thread. Xxx

problem welcome, but sorry you find yourself here. There isn't any way to do cancer wrong...

My poor MIL doesn't know how to react to me having cancer. I catch the sad looks she sends my way. She hasn't offered any practical help. Those I hang out with these days keep their happy faces on, and make sure I enjoy time spent in their company. I haven't stayed at MILs house since diagnosis, though have invited her to our house where I'm on home ground, and have escape route to my bedroom. I'm not likely to visit her anytime soon - until a while after treatment compelte.

I don't return phone calls or particularly welcome visits from anybody who isn't going to jolly my spirits. I have become closer with several school moms who have given me great emotional and practical support.

I wouldn't hold it against your friend. Just would disengage and look after yourself during treatment. That's what I'm doing with my ILs. For me, I expect relationship with ILs should get back to normal after I finish treatment. Meanwhile, I don't need any negative energy so I'm kind of avoiding them.

Morning all

Problem sorry you find yourself here but you are very welcome. Don't worry about catching up I replying to everyone we all struggle to keep up as the thread moves so fast !
Your friend does sound a bit insensitive, of course you are going to cry who wouldn't ! And have times when you feel positive about things and times when it's all too much,completely normal. I would try and distance yourself a bit from her if she's not helpful, you may find you get close with someone else who up to now has been more of a casual friend, a lot of us have found that. In the meantime ask us anything, nothing is off limits here
I'm waiting for radiotherapy to start too, starts a week tomorrow. You're not having chemo ? That must be a relief !

Had a great day yesterday in London war horse was amazing ! Just chilling today I think then pick ds up from cub camp this afternoon

problem, welcome, but sorry that you have to be here. It sounds as though your diagnosis has brought up grief for your mum and you are probably grieving for yourself, and the loss of your old life, as well. That's a lot of difficult stuff to deal with, as well as being debilitated after the op. give yourself time; be kind to yourself. Everyone is different, but I told lots of people about my diagnosis and in doing that was surprised by the kindness of some which made in easier to cope with the inadequacy of others. Your friend isn't coping well. It's good that you know you still love her, but you need to put yourself first.

malt, glad you liked Warhorse; it's great, isn't it? Dd and I cried and cried.

Morning all

Welcome problem I am sure you will find all the support you need on here! I can totally empathise with you on how your friend has reacted! I have had issues with a few friends!

goodness hope you have a better day today. Do you know how long you are going to be in hospital?

malt I'm glad you had a lovely time yesterday. War Horse is an amazing show! I have a collection of theatre vouchers, from Christmas and birthday. So really must plan a few trips to theatre ready as a treat once my Chemo is over!

Hope everyone else is doing okay, and enjoying the weekend. Xxx

Hi problem, sorry that you have to be here and sorry to hear about your Mum.

It sounds as though our timings are quite similar. I found a lump just before Christmas and immediately booked myself in for a mammogram - had the biopsy same day and got the results on 30 December. It made for a bit of a miserable NYE! Had a lumpectomy 2 weeks ago and as it's a grade 3, will start chemo on 18 Feb.

I'm sorry about your friend's reaction. I think some people find it quite hard. I've had one person completely ignore the news! But others who I was not initially so close to, have rallied round and are being brilliant. So far, I haven't had the 'attitude' pep talk yet but it might happen tomorrow when I go back to work.

BTW did anyone up their hygiene routines when starting chemo? I've just had to wipe something sticky off my mouse (thank you kids!) and it occurred to me that everyone uses my laptop and it is probably a thriving colony of germs and nasties! WIBU to buy a few packs of antibacterial wipes and put them in strategic locations around the house?

updating I bought little bottles of antibacterial hand wash, and placed them around the house and in my bag! Mainly because I work with children and spend half my life wiping noses!

I don't think it hurts to be a little more cautions! But I wouldn't worry too much. Let's face it germs are everywhere. I think it's sensible to be a bit more cautions on your low immunity days.

I've been working throughout Chemo, taking my charges into nursery and school. Had play dates with children with coughs and colds! But I have been lucky and only had one cold, since starting Chemo! I assume some of it boils down to how good your immunity is to begin with!

Updating I didn't really do anything different apart from try and avoid people with coughs and colds. Apart from close family of course but no one was ill during my chemo. Like really though I work with young children and I think I gave quite good immunity now having been exposed to all sorts over the years !

Hi Problem, welcome from me too. Sorry you're here, though. Can't add much wisdom to that of the others - but can add a few useful statistics if that helps.
Only 1 in 20 people with your sort of breast cancer will have copped it by year 5. So, that's very decent odds.

But realistically, any diagnosis of cancer is about as welcome as a slap round the face with a cold wet kipper on the darkest day of all history. So it might not cheer you up an awful lot at all.
What I would say is the standard advice gleaned from many scientists - take Vitamin D, curcumin, omega 3, lactoferrin, a low dose aspirin if you're allowed to (check!!) and sleep in a really dark bedroom at night. And boost your socialising as much as you feel comfortable with - online or otherwise. All those things improve the odds even more.
And have a
In fact all round

Breathing does help, green eye
Really really worried, they don't know. Depends on how soon I can walk unaided, go to the toilet alone, walk, etc. could be middle of the week. Not done a poo for about 6 days now - despite 4 doses of laxative. It's all gonna kick off soon. Lol

Besides my joking, I really am terrified of the results. What of it's this aggressive fibromatosis they think it is?! I'll need chemo and radiotherapy, drugs n all sorts. Low grade sarcoma would b better.

welcome problem though sorry you find yourself here.

goodness this not knowing period is worse than actually knowing, whatever it might turn out to be in the end. Once you know there will be a plan and you will know what's next. You will find a way to cope with whatever is next, just as you found a way to cope with your op. :) Hang in there, we are all here for you.

updating - I started off a little paranoid about hygiene to begin with, but soon lapsed to my normal slovenly self without any ill effects. They may give you a chemo "things to avoid eating" diet - which is basically the same things they tell you to avoid in pregnancy - but as you are on the continent they may be as blase about it what you eat as they are in pregnancy (you don't see many pregnant French ladies giving up unpasteurised cheese for example! )

Wow thanks for the welcome ladies. I've just got out of bed (sleep pattern shot) so I have a few of you to reply to.

Momof2 I think I've disengaged a bit too much from everybody, don't want to seem like I'm not coping. I've buried myself in books - I must have read 30 in the last few weeks. It's been quite nice to catch up on my reading though.

malteserzz - no chemo, so that is good. I was told that if I was HER2+ I would need it. I was told that HER+ was good-ish news because it would have meant another weapon to fight it with (and that Herceptin is a bit of a wonder drug as well). I get to have the menopause instead - not sure I'm into that!

Wren and reallyreallyworried - actually, my little sis has been brilliant and we have become closer. She's over 200 miles away but keeps in touch with me and has been totally non-judgmental and just lets me say whatever I need to. Wren, yes I'm already grieving my old non-menopausal and non-disfigured life. I still keep putting the dressings back on because I can't look at myself. Hard to make friends with my new mangled breast :(

Updating - yeah, NYE was rubbish! What are you doing going back to work tomorrow? Do you feel well enough? I was still 'one armed' after 2 weeks. All the best for your chemo, hope you feel as well as you can.

amberlight I've been having a look at supplements. I already take vitamin D after a fracture a couple of years ago. What do curcumin and lactoferrin do?

goodness Sorry about your news. What's the treatment plan? Sending you lots and lots of good vibes.

hi guys - sorry to fly in with a question - did anybody else get a rash during recovery of lumpectomy/SNB?
I've just noticed a prickly-heat style rash on my ribs underneath the wound and on the top of my arm down to my elbow of the affected arm.
i've called the hospital and the nurse said i should get it checked but could probably wait to see gp in the morning since i don't have temperature or anything like that. obviously full of nerves about the lymphodema thing....don't want an infection.
any experience? x

Hi harrietv - I had a reaction to the dressing which caused a bit of a rash locally.

How many nodes did you have taken out?