Page 9 | Tamoxifen 34 *the power of Sauron*

sandripples · 02/04/2013 20:07

This might seem a bit random, but as many of you know I was on this thread intensively in 2010 and just pop in sometimes now that I'm well, to say hello.

Anyway I just wondered if any of you are going to the Hay festival this year. One of my resolutions post-illness is to do new things. I've never been to Hay before and if anyone happens to be there on 30/31 May and fancies a coffee, could you let me know? I realise its unlikely but thought I'd ask, because you're an important group to me as well.
Best wishes.

thegreylady · 02/04/2013 20:57

Oh sandripples I usually go to the Hay festival.I will look at the programme and let you know :)

HerNextDoorAt21 · 02/04/2013 21:17

Feeling a bit better tonight. Took myself off for a lone wander round the shops to decompress after another tricky day with DS (9). I have jus t told,DH I have done too much and that I will be asking him to help more again and he said that is fine ...... I will stick by m? guns too.

Taking wee DS to GP tomorrow to see how his chest is with this cough he has. He seems to have bad rattles and sniffles all winter that never really comest t o anything ... Maybe time for an antibiotic.

coorong 95ml is quite impressive, I do remember how much better I felt when that much was me moved, not like I was going to pop any more...... Hang in there fellow LD Flapper !

SparkleRainbow · 02/04/2013 21:20

Hi sandripples, how lovely to go to the Hay festival, something I have thought I would like to do too, probably not the year unfortunately. I hope others could meet you.
X

notJenkins · 02/04/2013 21:33

Good evening from me. Lovely walk on the freezing cold but sunny beach this morning. Cup of tea and a chat in friends beach hut. Perfect.
Hope we are all returning to a normal blood sugar level after Easter. I have eaten too much chocolate for sure.

HerNextDoorAt21 · 02/04/2013 21:57

NJ I am so guilty of nibbling kids' Easter eggs .... I will go to hell

amberlight · 02/04/2013 22:09

It's a wistful thing for me; so often people on here say that they want to meet up. Or have met up. It's the one thing that I can't manage to do with neurotypical people - meet up with them. People like me aren't able to access groups away from our safe-place with trusted friends. But I'm there in spirit.

HerNextDoorAt21 · 02/04/2013 22:17

amber I'm sure you and I will meet one day..... We can use my Tom as a mediator !

AshokanFarewell · 02/04/2013 22:36

Good evening everyone!

jane fabulous bargains! I shall suggest my dad ventures down to Wilkos tomorrow in search of chocolate.

Ned that sounds fab - are you a primary teacher? I'm thinking of doing a primary or possibly early years PGCE after my degree :) It's a pain you have to wait so long to see the oncologist when you're worried, although I'm sure if they thought there was a chance that it wasn't working properly then they would squeeze you in sooner so hopefully it's a good sign that they're sort of ignoring you! (Doesn't feel that way I'm sure though :))

I didn't go into much detail about the op as I didn't want to gross anyone out! Basically there's some scar tissue in my pouch, at one of the openings, I'm not sure which end, which makes it very narrow so it means I have difficulty emptying it fully and have to go more frequently. They're going to stretch it. It's under anaesthetic but only takes about five minutes. I had it done before, soon after they joined everything back together, and it made such a difference but it has gradually shrunk back.

Pouch behaved quite well and I had a lovely time with my friend, it is so nice to see someone else as I haven't left the house much and I only really see my family, and she's fab, really good at talking which meant I didn't have to try and think of interesting things to say! [bugrin]

coorong that's an awful lot when it's inside you! I'm glad it's out now and hopefully you're feeling better :) I completely agree with you about everything post-surgery.

sparkle I had a swab test and they had to get a smaller speculum, was a tiny bit proud I doubt that will ever happen again... how are you doing at the mo?

sand that sounds fab, and what a good resolution. I don't think I'll be ready for that kind of thing by May but I hope you have a lovely time [busmile] and thegreylady too

HND glad HimNextDoor is being supportive, and I hope little DS is feeling better soon. Definitely worth a GP visit, poor thing. Sorry you had another difficult day, I hope DS is feeling less overwhelmed and you've all had a calmer evening.

gigs did you get your painkillers sorted out today? I hope you are more comfortable now.

I shan't be on tomorrow I don't think, as I have to be in hospital at 7.30am and last time I was last on the list and then they kept me in recovery for ages because I couldn't wee [bublush] but fingers crossed they won't keep me overnight!

Anyway have a lovely Wednesday everyone, good luck to anyone with appointments, I shall just be sending good thoughts to everyone as I can't remember who has appointments when [busmile]

Also apologies to anyone I've missed, this post has taken me probably an hour to write because I keep remembering things I need to pack for tomorrow so by the time I hit post I'm sure things will have moved on massively!

HerNextDoorAt21 · 02/04/2013 22:53

Ash Thanks for your lovely message, I am having a very calm night .... Dont want it to end !
Hope tomorrow is plain sailing x

Original poster

MaryAnnSingleton · 02/04/2013 23:40

Hope you have a better day tomorrow _HND and well done for being able to say you've been doing too much.
Ashokan- hope all goes v smoothly tomorrow - will be thinking of you
ned try not to worry about the tamoxifen.Hope you can see Onc quickly for reassurance.

OP posts:

Gigondas · 03/04/2013 06:41

All?

Candle lit for ash- thinking of you.

Amber- I was thinking that meet up might be tricky for you. Maybe if we meet up, we can think of someway to include you in a way you are comfy with ? I meant it when said that even those who aren't able to be there physically should have a or and join in wherever they are.

Painkillers do seem to be helping as had a really good night (for me). However new neuro painkiller does make me feel a bit woo/spacey so apologies in advance for any posts that are a bit daft.

thenightisyoung · 03/04/2013 08:44

Good luck today Ash I hope it goes really well and that it will allow you more unbroken sleep. I have an extremely high gross-out threshold on bowel stuff so feel free to pm if there is anything along those lines that you want to discuss. I keep forgetting that normal people do not talk about BMs etc in public and i do have to watch myself sometimes .

HND i'm glad you managed to say speak up about needing some help. You seem to be doing such a lot in such a short time it's no wonder you feel wiped out. I am probably a complete wimp but after two ops, the last one over a year ago, and no radio or chemo I still get tired if i have a hard week at work or a late night.

thenightisyoung · 03/04/2013 08:47

gig pleased you had a better night, gratefully accepted

notJenkins · 03/04/2013 09:02

Good luck today ash

Glad you had a good night gigs

hnd well don't for speaking out. I think a mums automatic response to anything is guilt so you need to put yourself first for a change. You need to rest or your recovery will be set back. My dh got very frustrated when I could not move from the sofa but I got a bit snappy and pointed out that I would rather not have cancer and be able to function properly he soon piped down.
I have a date to return to work. Feels a bit odd but good as in I am getting back to normal. I guess I need to see Occ Health first.

I am hanging my washing outside today for the first time this year. This is making me ridiculously happy. I am now worried for my mental health that the sight of my towels flapping in the sunlight pleases me so much.

amberlight · 03/04/2013 09:59

I love meeting up with people. But quite often they don't 'get it'. So unless people are autism-aware, they end up thinking I'm horribly rude, and never wish to see me again. Which is all very awkward really. So much depends on totally accurate body language (eye contact, smiling, tone of voice etc), and I can do that stuff really well for a really short time. Then my brain gets so exhausted trying to do it all manually (cos I don't have any of the automatic stuff built into my brain). Then I forget how to look friendly and interested and make lots of eye contact...and people read it as "oh hell, Amber's bored with us - how rude". End of group inclusion. It's fascinating in a way, and I can totally understand it. I'm great fun really in words and jokes - just can't do body language, and need to bail out to rest now and again (or my ability to use words switches off as well, which is very naff). Ruddy brain wiring that overheats and switches the fuse off. Literally. So letting me do my own thing and not taking offence at it is important. I love everyone anyway.

all round, I think. notJenkins, hurrah for the laundry! Know what you mean. I managed to do some weeding in the garden and was excited for two days.

Copthallresident · 03/04/2013 11:00

Amber That is a really interesting insight. We have friends Aspergers DD to stay quite often and we were in on the therapy that taught her to do it on manual. I used to think that she was the most polite and charming 10 year old I knew, DDs certainly weren't as good at being polite and making eye contact with everyone at that age, though when she was younger the effort of it all would after a while make her rock and shake her hands. Now we know to let her go off and do her own thing. DD actually finds her company really comfortable, they have been friends since tiny , in that she is funny and clever and doesn't play all those manipulative teenage girl games. I think it is very true that we are all a little on the autism spectrum and I just wish I was better at doing it on manual in situations where I am not entirely comfortable, to be honest some of what you describe happens to me sometimes too, but may be that is coming from Yorkshire, or the Cancer tourettes ........

Ash Hoping it all goes well and it all gets sorted out today.

hnd Glad you carved out some me space. I think of it all in priorities in terms of making sure I don't get sucked into being wife mother etc. and not having time to look after myself, always making sure health is at the top of my priorities and that my indulgent stuff, my course, gardening etc don't get lost. Not always very good at it though, or possibly I am a spoilt brat

pen I so get the joy of hanging the washing out , just not quite there yet here. I keep trying to go into the garden to work but when zombie fingers set in with the cold I have to give up.

gigs Saw comment on Pompeii exhibition , it is on for a few months, you will be well enough to go see it, a possible vision?

Lots of nice me time in prospect as good friend coming over to stay tonight and galleries and theatre planned. DD and I saw Peter and Alice last night with Judi Dench and Ben Wishaw, he was absolutely amazing , a really powerful performance, I had tears pouring down my face and even beat Sam Mendes sat on same row to giving him a standing ovation. He is for sure going to be one of our greatest actors. David Dimbleby on next table in restaurant too, DD said Who? but then he isn't in Harry Potter.....

amberlight · 03/04/2013 16:00

...and having killed the thread...

Gigondas · 03/04/2013 16:13

Nope I was very grateful- I have worked with a number of people on the spectrum . There is a hell of a lot more employers could do to make it easier rather than putting people into uncomfortable situations then being surprised when they don't react we'll.

Drugs seem to be working as have had a good day so far- trying to study now but will be back later. Hassling the dr as still no op date. At least am comfy now but I would like to know so can plan. Onc warned me that can be slow to arrange things even after saying its urgent.

Gigondas · 03/04/2013 17:28

Did huge post and lost it- hope ash ok.

Date for first procedure set for Monday .

Miles more comfy but definitely a bit off my face - gig today

Copthallresident · 03/04/2013 18:16

Stalker coach now hippy bus

Glad you have date now GIGS group hippy hug

Amber It was my wittering on that sent everyone running

AshokanFarewell · 03/04/2013 18:27

I'm home! Well, I got out about 12.30 but then I got home and fell asleep. Four hours of uninterrupted sleep, mmmm the op went well, no pain or anything. Lovely surgeon thinks hopefully won't need to do the procedure again.

Thanks for the good wishes everyone

gigs I'm glad you're more comfortable, even if a little out of it and good news you've got a date, how do you feel? Will you be in hospital a while after this op?

amber I liked your post, thank you for the insight :) would you feel comfortable meeting new people if you'd explained in advance?

thenight I know what you mean, I used to completely refuse to every discuss "toilet business", I'm still a bit prudish about it but sometimes I forget what's appropriate, especially when eating!

notJ I felt exactly the same way last spring when it got warm/dry enough to hang out the washing! There's something summery about washing blowing in the breeze.

HND how was today?

Gigondas · 03/04/2013 18:28

I like the look of that hippy bus.

Which reminds me as I know you may be planning a west coast trip copthall,I have never been so disappointed as when I visited the hippy centre in San Francisco at haight ash bury. Run down with a few manky shops selling tie dye and doors albumI may have been a tad grumpy as was full of morning sickness with big gig and on what was meant to have been a wine tasting holiday.

graciesmall09 · 03/04/2013 18:55

Great news gigs that you don't have too long to wait. Is this for the angioplast?

Hope your day was a little brighter hnd and you got some rest.

kurri are you out there lovely? How is little old lady dog? Please don't leave it too long to come back.

ash glad today went ok and yeah that you might not need it again.

ned sorry you are having a worry. I did have this discussion with my onc as I wanted to know what he was going to do if my periods returned. He said it was actually the chemo stopped them rather than the Tamoxifen and there was no information to suggest that periods returning had any impact on recurrence. I asked would he consider a hysterectomy and he said if anything (although he wasn't suggesting it) he could give me injections to put me into the menopause. It will be interesting to see what your onc says. Your new term sounds interesting DD would just love mini beasts.

At a ballet festival today which was an experience. DD really enjoyed herself and remembered her routine but my goodness the standard was really high. You could tell some of the girls had been dancing for years. Thankfully I will not be morphing into a Dance Mom anytime soon.

jchocchip · 03/04/2013 19:09

Hello peeps. Home from work and making dh do tea even though its my night. Eaten lots of chocolate, really should do some exercise... Good to see the sun today, we have nearly got rid of the snow! Bought some ber on way home. [Wine] time :)