***TAMOXIFEN number 19***

[MaryAnnSingleton]

ta daa !

Thanks smee - will have a look!

Crikey - loads going on here. Babies, concerts etc. If anyone interested in short fair wig, only worn twice do let me know and I'll post it to you!

For old friends who asked, my DD is still working in London and that seems to be going fine, touch wood. That's 4 months now - so nice that she is earning and enjoying being in London (and was in Paris last w/e. She had purse nicked but otherwise allwas very nice). I do realise that she and we are lucky and it is terrible that so many young people are unemployed. (including DD's peers from school in a number of cases)

Yes my DS will be OK, but I suppose I had got used to Cambridge after DD being there and its just so wonderful..... its true that DS can plough his own furrow, you're right. I didn't go to Oxbridge myslef and enjoyed Edinburgh so hope he;ll find his feet and a good crowd of friends (or even just a few ) Good that he has got a very nice girl-friend as this makes him happy and he's doing so well academically. Did anyone on here go to Manchester uni by any chance? Or Imperial? I worry about uni in London - so expensive and difficult to find accommodation etc.I think very difficult to manage unless you have family there? Views welcome. Sorry I know I'm on the wrong thread for this!

KK - I think zumba is great but I couldn't keep up when I tied it and then my osteo advised against it! I have put tons of weight back on over the winter, grrr. Have been doing rather a lot of entertaining one way or another so far too much food around the house for two months - having no willpower whatsoever this is fatal!

Anyway, I'm thinking of those having treatment/waiting for results etc and my only justification for being here is to say don't worry I'm another survivor who is back to normal.

Sand- It's good to hear Someone on other side. Sorry about ds - I know it's easy to say but there are other universities . Dh went to manchester and had a great time (although Wasnt the most academic). Dss is in last year at reading and dsd just started at warwick.

I would agree that London isn't the best uni location (and I say that as a lifelong Londoner). It's expensive and big.

One of nice things about college or campus based unis is you have more of a community feel and it helps the move away. I also went to Cambridge but dsis went to Newcastle and I think fact she was not on campus and in a large town she didn't know made it very hard. But guess am telling you what you know. Are these two the only two options ds is looking at?

one of my friends' dd is at Manchester (first yr doing maths) - I could ask her what it's like... dh went to Birmingham and loved it. I was brought up in London and stayed there to go to art school.
Righto- cheese scones are on the trolley..

Great news from me; I'm feeling a lot better , the pain in my groins was like a hard swelling each side, the consultant said it was probably either blood or fluid stuck underneath. Well it seems to have gone down a lot and so much less pain! The infection in undercarriage seems to be under control too.

Gigondas, u sound like such a positive person, with a lovely family. I really hope that next week will go well for you. You have done so well even to put up with the lump!

Re unis; my DS is trying to get in central school of speech and drama , or canterbury to study drama. Both are easy to get to from home. I went to canterbury as an adult to do my degree. It's such a big thing for them, and I must admit I was wary of him studying drama, but now I think well, there are not many jobs out there, so he may as well follow his 'dream'.
As far as I know chemotherapy is not usually offered for vulval cancer, so if its in the lymph nodes/elsewhere it would be radiotherapy. I should get my results in around 2 weeks I think.

MAS, cheese scones are my favourite, yum!
Hope everyone has some nice plans for the weekend, I'm looking forward to watching the snow from my sofa!

That's good news feeling easier Holsten. It must be quite awkward given location as i know that anything that involves sitting awkward for me so must be worse for you.

Radiotherapy also likely treatment for other bits/shrinking the sarcoma if needed.

I am trying to stay positive as much for dh and girls as me. I did have a wobble last night as rang my dad to tell him news. He is a Gp so think would understand but he is also bad at dealing with feelings . So it was a call that was more me saying it will be alright dad then dh jollying him along. After that I did wonder if I was kidding myself about how I felt about call yesterday . But what can I say? They were never going to call and say we made a mistake/ it's all going to be fine and i don't want them to miss anything in diagnosis. It does help tho to vent here while I wait ESP as others know how it feels to hope that what they have spotted isn't serious.
Going to help myself to chocolate before finishing the night feed.

Oh and Holsten good on your son for following his dream- he sounds very talented .

holsten so glad that you're feeling more comfortable ! enjoy the snow scenes and lots of good luck to your ds.
Gigondas I love this thread because it's somewhere you can say how it is but also feel huge support from everyone else- hope it will do the same for both you and holsten

Morning all. It is hard dealing with other people's reactions. Especially when you don't have full results / prognosis.

I still miss my Dad terribly as he always knew the right thing to do.

Time for a and porridge. Then I have to go out for a run, aargh. See you later if I survive

Morning everyone, - Gigondas - it is very hard to tell the news to your loved ones, - I kept putting it off (probably not good, because they'd half guessed something was up, and was easier for them to deal with the facts rather than speculation) - I'm sure once the news has sunk in for your Dad, he will be a support for you. Hold on to the fact that you are being taken good care of by the hospital, and getting all the right tests etc.

oh - just noticed you posted in the middle of the night - so hope baby didn't wake too early this morning and you are having a bit of a lie in

Holsten - so glad you are feeling a bit better, pain is so miserable making - you can't think straight. Lovely to hear about your DS - I wish him the very best of luck. My DS is also in the theatre business, - he got pro. work and his equity card in his last few months at school - he now runs his own small theatre company, and for his day job teaches in a prison (drama + literature etc.) He has always absolutely loved drama, and can't imagine doing anything else. He'd like eventually to get into bigger scale theatre management. I'm sure your DS will have a wonderful wherever he goes to study, he sounds a lovely lad

Two of my nephews also went to Canterbury (one is in his final year in fact) and both seemed to really enjoy themselves there.

SR - great to hear that your DD is enjoying working and living in London, it is brilliant she has a job and is doing well. My DD is still looking, although she does have a private pupil now, (for piano) and hopes she will gets some more soon - there has been interest by word of mouth etc.

DD has a friend doing medicine at Imperial, - and she seems to be enjoying herself, I will try to find out more from DD about her living accom. and expenses and so forth. She's in her fourth year now, so has been in various different accoms.

Jane - sympathetic hugs for everyone missing their Dads Mine was always a total rock, especially if I was ill (although he never knew about my cancer as his alzheimer's was too advanced by then to take it in properly, and there seemed no point in worrying him)

Cheese scone - yes please MAS (I like these virtual snacks - they are calorie free ) - I have had bran flakes and fruit for breakfast - I don't suppose anyone wants a bowl

Waiting for the predicted snow here, - hasn't arrived yet!

Oh sorry - I've done a huge post again - I must be briefer. (I always had problems staying in the word count for essays - I could waffle for Britain)

Wish I had taken surgeon up on his offer to drain the fluid off my boob. . . Bit sore and tender this morning. It could of course be psychosomatic cos now i know its there, im fretting about it. . . .

Can GP or nurse do it, or need hospital again? Just thought it might be worth a try if not better by Monday to make everything s bit more comfortable? Any ideas?

anyone? Kettle's on. . . Xxx

Ned - contact your BCN - there will be a seroma clinic at the hospital where they will drain it for you. But ring first thing on Monday - because they aren't always on every day, and it might be on Mon. mornings. They'll fit you in.

Or any of the BCN's at your hospital will tell you obv. - doesn't have to specifically be yours.

Ned poor you- that sounds uncomfy( not same thing but I had a golf ball sized milk galactaceole with dd1 that needed draining constantly -not quite same but i can appreciate the relief) , I know I am a lot more conscious of my growth now I know what it is (and any aches or pains). My mum reckons you do become hyper sensitive to anything after you are diagnosed and she is probably right.

And don't know about cheese scones but I could eat some ordinary ones with loads of jam.

Kurri you are right about telling loved ones being hard. I do worry about dh as seems to be so robust about this. Also I have minor dilemma as joined an nct group. They know I have an issue with this growth and haven't been out to meet up as yet as been giving birth etc. I don't know these women that well yet and most of
Them are yet to give birth so I don't want to say anything as it could be upsetting for them and also it changes focus of what group is for (and why I want to go) which is to talk babies.
So my instinct is to say that it's still an issue that needs treatment but not say its cancer.

Totally agree with your Mum Gigondas, - I think your do become acutely aware of every twinge, (also in my case, you tend to keep feeling your lump just to see if it's 'still there' and it makes you sore).

Does it make feeding your DD2 very hard? - I'm wondering if something like a squishy bean bag would be more comfortable for you to sit on?

It does make feeding awkward unless lieing down and cushions do help. -also Having to be careful due to c Section too means i am quire often to be found lumbering Around on bed like a beached Whale So i can position dd. and The least said about how I had to get to hospital when had dd the better (lieing on a camp bed mattress flat out in back of our car ).

it does mean going out fairly limiting as cant sit so the comfort of Feed and natter in coffee shop with newborn not really viable. One of things want to put to consultant is that it is one thing to delay surgery for clinical reasons but there is a practical side to it that I am limited in movement and uncomfortable due to it (luckily painkiller help as was bloody agony when pregnant ).So would like them to balance that in (obviously if radio therapy does shrink it then thats good but If it's a matter of a sunburnt arse on top of everything that is not the best!).

oops crossed posted G. - I think it's a question of playin git by ear I think. There are those who need to be told obviously - anyone close, either because you need to share with them, or they would be asking questions other wise. And everyone else is on a need to know basis - you choose when and if and what you tell them.

The only thing that really matters is what is right for you and your close family, - you have to be a bit selfish and consider yourself first, so you can focus on getting well. You don't need to feel you suddenly become public property when you get cancer, - you get enough of that at the hospital!

People react differently, and frankly at this time in your DX, you don't need to be worrying about how others will cope (I mean from experience it can range from manly claps on the back and 'positive thinking' spiel, to kindness and empathy but treating you as normal, to bursting into tears and you have to comfort them!)

If it were me (and it isn't so feel free to completely ignore ) I would keep NCT as somewhere you go to chat and enjoy baby related stuff - a little haven away from medical stuff. It's nice to try to keep some areas of normality in your life.

Yes - good to have a long chat with consultant I think its all a balancing act. Is chemo likely to be an option at all, or will it be surgery and radiotherapy?
I would definitely ask about any skin problems likely from rads. - IME your skin gets sunburnt, but the place where I had real problems was under my armpit, where the skin is less able to breathe (I had breast cancer and mastectomy - so had a flat area of skin on my chest).

The flat bit was fine, though 'tanned' , hopefully you will have a relatively flat surface that they will zap. (And I guess you will have one of those plastic protecting mould things they make to protect other regions).

At least you have some pain killers that work - don't be shy about badgering for something stronger if you need it, and you could ask at the hospital if they have anything to make sitting more comfortable - they always seem to have all sorts of stuff, hidden away, which can make life a bit easier.

Afternoon ladies. aplenty here.

Welcome to the new peeps. So sorry you had to join this thread in the first place but, now you're here, it really is a great place to come and vent or ask questions.

I had my appointment with the BC nurse yesterday afternoon (just over a year since the original diagnosis, can't believe it's been a year) and we talked about my diagnosis in detail and I was able to ask her all the questions I'd been mulling/panicking over. Firstly, she confirmed that I did indeed have Inflammatory BC which I thought but no-one actually confirmed. I didn't find a lump originally - I just had a largish red hot inflamed patch on my breast. It was my doctor who found the lumps although I was convinced they were cysts to begin with as I knew I had lots of them. I was also concerned that no-one had ever said the words 'clear margins' to me - but they were, so that's a relief. Then the nurse reconfirmed to me that I was stage 2. One of my concerns was, having been through chemo, then the mx - that there were still 'traces' of cancer in two of the nodes and an 8mm lump (which was drastically reduced from the original plus 3 others had completely disappeared) which remained. Because of the mx and the node clearance there was no other trace but in my mind I had convinced myself it had seeded elsewhere and wanted reassurance. She spoke to me at length about the chemo zapping stray cells and the rads so I came away feeling a tad better. My follow up appointment with the surgeon is on the 17th so she has made sure I see him and not one of his 'minions' as she put it. She said he will reassure me further.

I thought, once treatment had finished, I would feel euphoric and just get on with things but - although that happened initially - I can't believe I am wasting time dwelling on the negatives and being such a misery guts. It's not depression as such but I am obsessed with a bad outcome and need to change my mindset ('moving on', as the nurse put it). I can't seem to pick up a paper or magazine without reading a sad sad story about some poor woman who hasn't made it. I am going to have to give up reading for the forseeable future - concentrate on books more - for a bit of peace of mind. Work is keeping me busy, there's no time to dwell at school. And I try hard to keep occupied at home, it's exhausting. But when I'm driving or just sitting with a cuppa it all starts again. Any tips?

Off for a long read of the thread and see what you've all been up to, can't believe we're on 19 already. Special thanks to MAS for starting it originally and for having somewhere to talk things over.

Hi Figgy - a year is a huge milestone I bet. I've had wle in November, no node involvement, finished 20x rads on Monday. I'm really hoping to move on in my head very soon. I am feeling so much better, and getting on with stuff without the constant anxiety. The stumbling blocks for me will be the follow up appointments when it is all brought back. I see the onc on 1st March. I've been told I had clear margins, but the back of the ILC was on the chest wall, so not as big a margin as they would have liked. I try not to dwell on that, as a clear margin is a clear margin. I'm on Tamoxifen and feel fine on it, I take it automatically at night without thinking about it's significance, it's on the beside. Ocassionally unbidden thoughts enter my head, I try to relax and banish them. Not getting overtired, if you can achieve that, I think is key. Giving time up to pleasure too. I continue to read through the posts here as I remember how frightened I was early on, after dx and before treatment and how supportive and humouress everyone has been. So I hope to do that for others ifyswim. You sound great, just getting on with things and working. Avoid things that upset you and see if that helps. Nothing wrong with a bit of self nurture to strenthen your self. All the best

Hi Figgy - lovely to see you, how are the boys? - did DS2 decide he liked the new club he was trying out?

You are brave to go through your DX in detail, - its something I have never done, although I'm a bit further down the road, the idea still scares me. But maybe inspired by your example I will. - I'm glad you got to talk it through, and that you can do so further when you see your consultant.

I think it is very scary seeing it in black and white, - it all sounds so clinical and scary.

Also I think 'end of treatment' is a fairly well documented and known stage in cancer treatment and recovery, - don't berate yourself for feeling down or negative - I certainly felt very much the same way, and apparently its a very normal reaction. in some ways it's over for everyone around you, because they see you're not going to the hospital any more, but you have to try to get on with things and deal with all the uncertainty and paranoia we all feel.
All without the support of frequent hospital check ups. - I felt rather abandoned and alone, - I hope you do feel better soon, but remember we're aways here to talk things through, especially if you are having a wobbly day.

And yes to reading nice books, - again the sad stories are always there but, there are lots of happy ones too, - I think you develop a sense of hyper-hearing for hearing and taking in stories with sad outcomes, - I seemed to and always felt very upset by them. But I have calmed down a bit now, so I assume that as you move further away from your DX that gets a bit easier.

The thing that really helped me was yoga, relaxation and calming breathing techniques. And the idea of living for the here and now. One of the oncologists said to me, - you can't change what's past, you can't predict the future, so try to enjoy every day as much as you can, focus on what you are doing, and will be doing very shortly so you look forward to outings and activities and family times, without fretting about might be's.

Hope that makes sense and I am not coming over all american self-help bookish

in a huge rush but wanted to give figgy a hug. Am wondering whether meditation and mindfulness might help you with 'moving forward' as they are designed to focus your mind on the present moment rather than ahead or in the past - Mindfulness particularly teaches methods of letting the thoughts pass you by without your involving yourself with them- you acknowledge that they are there but you don't get involved in them. If you search you might find a course near you, but there are many books on the subject. I did the course in 2010 and I do think it helped a great deal.
Am off to bake some cupcakes now,which will appear on the fbs trolley shortly.

I can let you have recommendations for books and cds figgy,if that might help.