Tamoxifen bus shelter -42

[Gigondas]

Dragging trolley onto new thread.

Hi all. Seem to be in Greece. Sending lots of love to all as I'm reading through. KK yup re what you have said.

kk you said everything that I would.

I know some people dont think of DCIS as 'proper cancer' and i was told only last week how fortunate I was and that "the surgery is the easy bit and the treatment is the terrible thing".

I was also discussing with another lady who had DCIS about the post diagnosis support services available and we both sort of agreed that with DCIS, once the mastectomy is over and the offending cancer gone in the bin, you are just basically cut adrift and left to go home and get on with your life. Well no actually, it is not like that for me. I now know that my body is capable of producing and growing cancer and that is something I was blissfully uinaware of until last November. That fact alone scares the shit out of me every day ! Yes i do feel fortunate but its not easy, I have still had an amputation and that needs dealing with too.

smee my DS(9) has days like this quite regularly and there are very upsetting for everyone. My DS(4) doesn't really understand whats going on and either mimics his behaviour or gets very upset that he is behaving irrationally and getting my attention and basically 'ruining his fun'. Some days I just dont know how to deal with it at all and it is very difficult as a parent to remain rational and try to support both childrens' needs. I do hope when amber gets back she may be able to help me by expressing how it actaully feels and how I can help him.

amber I an at your holiday but hope youa re having a truly amazing time xxxxxx

Cancer's cancer. Doesn't matter if it's DCIS or full blown mutating, it's all utterly terrifying.

Must be very tough knowing how to cope, HND. Do you think it will get a bit easier as they grow? If only because the younger one might be able to understand a bit more. I'd bet Amber will have some sane advice. How dare she go on holiday..

Very wise posts today
I agree it's all terrifying and basically you do whatever suits you to get through it.
I'm bored today, no energy to do anything though

really regardless sleepless nights - I find a long walk helps me sleep better. I'm walking about 4 miles most days past two weeks, and find I'm sleeping a lot better. Best of luck with your surgery tomorrow.

General question - My chemo will start next week or week after (Starting with 4 sessions AC 3 weeks apart, followed by 4 weeks Tax). I know my white blood cell count will be at its lowest during the second week. Have people generally stayed away from crowd situations during this week? Or gone about your business as normal as possible?

I go to a music class on Wednesdays, about 30 adults all packed into a room for an hour (and several sessions of multiple kids/adults lessons in same room for several hours earlier that evening).. I'm hoping to only miss this on my 'bad' week, and make it for 2 of the 3 weeks most cycles. And my kids have all sorts of concerts/shows/performances during the next 6 months. I'm wondering how careful I need to be?

Also, I'm loving my walks. I'm going in all weathers at the moments. (Lots of misty days here lately). I presume I'll just have to be sensible, and not get wet, etc. Or would this also be something that I'll need to think twice about during that second week?

Hi all,
I haven't posted in a while though have been trying to keep up with what's going on with everyone and reading updates and views with interest.

I'm in another waiting phase now. Saw the surgeon this morning, and she got her tape measure out. Apparently I have quite heavy breasts for a woman with my build, which came as a bit of a surprise as I haven't ever thought that.

I'm booked in for sentinel node biopsy a week tomorrow and then mx with reconstruction or mx and chemo depending on the results. She's also going to take out the thickened node that I had biopsied a couple of weeks ago - that came back clear, but she wants it out anyway. I have arthritis, and she thinks that's why it's thickened.

All my tests so far show DCIS, and I have been told that they don't expect to find anything in the lymph nodes, but I still feel worried about it, as I know you all can imagine.

Feeling a bit weepy today. It will be about 3 weeks before I know anything else, which seems like ages. I'm off work so have lots of time on my hands, but honestly don't think I could function at work at the moment.

Thinking about you all, especially really, and wondering how she is getting on, and handbags who is waiting, but of you all, going along this bloody vile 'journey'.

I went to see my DD at the weekend. She has just completed week 2 of her first year at Uni. I miss her so much, but so pleased that she seems to be settling in well. I haven't shared too much with her as I didn't want her worrying about me when she already has a lot to get to grips with, so just gave her the basics. It was hard not letting on how worried I am.

HND always happy to help explain. Back on 8th or feel free to fb chat as that's easier than mn on my tiny phone.

mumoftwo chemo affects people differently. I have only had one lot and apart from a bit of constipation for 2 days have felt fine and so far still gt my hair. I'm on FEC. My bcn said its early days but I have carried on what I do, and tried to do walks at least four times a week. It's beautiful round the lake where I walk and lifts my spirits.

Someone else might we wiped out by it, so basically you don't know, so I would carry on regardless.

Mom, I agree with foofoo, as you can't really know how you'll feel. I pretty much carried on as normal when I felt I could, so didn't really avoid anything other than swimming pools! Your team should tell you which days you're most at risk, so see what they advise.

Marshy it's totally, totally normal to feel weepy. Wouldn't it be more weird if you didn't? Come and talk on here.

Waving to Amber on her boat (is that what you call them?!) Have you made it to the Captain's table yet?

Mom of 2 I've carried on as normal apart from work as I'm a teacher, I do try and avoid people who are ill but I've been to open mornings at school etc
Marshy the waiting is very hard hugs
Smee are you ready for your posh do yet ?
Amber your cruise looks amazing and your pics have really given me a lift over the weekend my plan is to get back on a ship one day!

Malt, am about to posh myself up

Get those glad rags on and have a great night

Mom I'm having chemo at present (all Tax) and the advice to me about infection was to avoid the Tube as I normally commute into London and use the Tube for part of my journey. But apparently I am alright travelling on a London bus! Probably all irrelevant to your circumstances, but it does show that you don't have to lock yourself away completely.
Probably best to try to avoid seeing friends who do have bad colds etc but you can't prevent your family being ill and can't banish them!
I've found that Tax rather knocks me out from Day 3 to around Day 7 (and I think my immune system is knocked out then) but after that I am doing normal stuff except that I'm working mainly from home rather than the office. Going out on a walk can only be beneficial.

Nah,not been near the Captain. Poor chap wouldn't cope :-D
Chemo; I did most things but stayed away from dense crowds in week 2. And was mindful of hand hygiene.

Hi all

Firstly Thankyou for all the support and positive messages.

Now let me begin with my POSITIVE....... yes I finally for the first time since I was diagnosed have a positive.......

MY CT SCAN WAS CLEAR

I was so happy and relieved when she told me. It's like a huge weight has been lifted. Now just to get an all clear from the bone scan, which is booked in for the 10th.

My BCN talked me through my previous surgery and results. Then talked through tomorrow's surgery. Then talked about what is likely to happen next. So although it was alot to take in. I feel so much more calm and in control, than I did yesterday!

So during my first surgery the surgeon removed 4 nodes, and they found cancer cells in all of them. Hence the need for node clearance. She said my cancer was still grade 1, so caught early. Which was good to hear.

Apparently the surgery tomorrow doesn't take too long. She said I would be under GA for approx 30-45mins. Sounds good to me! She then said I probably wouldn't need to stay overnight?? But the doc I saw to get results said I would! So I think it's a case of wait and see!

Then I thought, I may as well get information on what 'might' happen next. As I thought, and reading some of your experiences convinced me even more! I will almost certainly be having Chemo. Probably starting sometime around the beginning of November! I'm really not looking forward to that BUT if it's going to give me the best chance of kicking this cancers butt, then I will cope with it!

I was quite shocked when she said it will take approx 5 months to do the Chemo! That seems so long! But I am hoping that you wise ladies will tell me that time flies, and it'll be over before I know it.

I was pleased to be told that I would be able to continue to work, if that is what I want I think she has got used to me now, as I was about to ask about working and she told me, Yes I could before I asked

So now just to get through tomorrow. I'm feeling a bit nervous about it. But at least I now understand the surgery, and she explained about the drain, and now I don't feel quite so in the dark.

Must now go and pack an overnight bag! Just in cases I need it. I'm sure I will be back on later, in a panic worrying about tomorrow!

Hope everyone had a good day. Will catch up properly when I can concentrate a bit more! Xxxxx

Sorry for that super long post, didn't mean to gabble on for quite so long

well done Really - that is fantastic news. I know when I was waiting for CT results that was the biggest hurdle for me - you can really move forward now.

The fact that it is Grade 1 is good news - that means it is slow growing rather than it was caught early though (or so I think).

Yes, chemo does drag on but loads of the ladies here are so close to finishing now so you'll get there. After your surgery you'll get an onc appt and he/she will give you all the chemo information.

and I forgot say - what suprised me is that the onc decides on the Rads and hormone therapy so once you see them you'll find out loads more about the treatment plan.

Good evening from me.

Fantastic news really I am so pleased for you.

gigs Dorset Dorset Dorset we could have a mini tamoxigang piss meet up and I may know where you could get a beach hut mates rates.

I am feeling like the dark cloud is lifting and my body is actually working again. It is so weird knowing you are mentally affected by something so much but can't do anything about it. Thanks for the support again. I had forgotten, however, that my menstrual cycle gets all excited when I go back on my meds so I am very spotty and having a period from hell with back ache.

Still no news on the mortgage, they keep saying 24 hours but they obviously have a very slow clock.

really that's great news :)

notj glad you are starting to feel better back on your meds

malt - how are you doing now?

smee - you are right I probably don't have to go back to work during rads. Just partly me yearning to be "normal" again and partly worrying about my job. I only started there in Sept 12 and my current contract (after two extensions already) is until end March 14. I have a possibly irrational fear that they won't extend my contract further, so want a chance to remind them how fabulous I am before my contract runs out.

to everyone else

Just checking in after a mad day blitzing the house as I actually had some energy today. :) Feeling very tired now, so think I might have overdone it a lot bit. Still at least the house is starting to look like someone owns it again....

Betsy my legs are less achy but got a furry tongue and horrible taste in my mouth, had this on fec too so hoping it doesn't last too long. Really tired too have had 2 naps today. You know what I'm like I'm waiting to see what else happens ! Not been out today but I will go and visit mum and dad tomorrow if I feel ok
Glad to hear you are ok and yay for tidy house now it's just keeping it like that

Great news really

NotJ I'm pleased you're feeling better but sorry you're still having problems with the mortgage

Hope everyone's having a good evening x

That great news Really - very pleased for you - and yes chemo does take a few months but you won't feel lousy for every day of that - after your first one you'll have a better idea of how you will react, when your good and bad days will be etc, so you can plan round it a bit.

NJ - fingers crossed for good news on the mortgage front.

malt - sympathy for horrid taste - that was one of the things I especially hated - I couldn't enjoy a cup of tea as it tasted so vile!

Our new car won't be ready until Thursday or Friday - which is a bit poo.

DH's birthday soon - I have no idea what to get him, - what do you get the man who has no interests who has everything?

Good to hear I will probably be able to keep up my walks. I'll rethink the music session on my second week. 30 adults jam packed into a classroom in winter time, with heating on and no air circulation is probably a breeding room for all sorts of things. I'll probably limit it to my good week until chemo is over.

Hello all

I've caught up with all your posts but no hope of remembering enough to reply to them all! Even though I haven't posted for a while I've been thinking of you all.

I've moved into my flat in halls. I'm incredibly homesick as I've barely spent a day apart from my parents in over six months (my dad works from home so I've been with him every day). I also feel completely lost and I just don't really know where to start with getting my life back! I did go to a yoga class today though so that's a positive step :)

really all the best for your op tomorrow! Understandable to be scared but it'll all be okay. Good news about CT. Chemo is doable, it'll go quite quickly :)

Mom I'd wait and see how you feel/how your white count is as you may be able to carry on your group :) my onc had a massive bee in his bonnet as a lot of the immune advice is not based on latest evidence - basically he said I'd be perfectly fine to commute to work (train then Tube) which nurse had said no to, and could go to crowded rock concerts if I wanted. As it happened I was too ill to consider doing either but the option was there! hospitals are one of the germiest places so if it was that bad they wouldn't treat cancer patients in them, he said.

kitkat if you're looking for a water park, Atlantic Toboggan in the Vendée is very good apparently. We stayed nearby but my mum wouldn't let us go as it was during a heat wave and we are very fair skinned! But the area is lovely, if a little touristy, lots to do and big sandy beaches. I'm hoping to return one day when I'm up to going down water slides again we stayed on a campsite with a mini water park.

HND sounds incredibly difficult, hopefully amber can gie some insight. And hopefully things will improve as younger DS gets older and can understand what's going on better. In the meantime big hugs and plenty of for you x

amber looks to be having an amazing time! And a well-deserved break :)

nj at bank. I hope they get it all sorted soon. You'd think that would be a fairly common thing for people to do and that they should allow it and do it quickly. Almost makes me glad that I will never be allowed a mortgage! :)

gracie I'm so pleased the MRI was clear, fingers crossed for the blood tests too :) I don't blame you for being upset!

I'd better leave it there as this has taken me half an hour to type! Best wishes to all of you especially those having treatment or having a wobble. Goodnight xx