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Tamoxifen 34 *the power of Sauron*

(989 Posts)

new thread !!!

PenPerson Fri 29-Mar-13 18:38:31

Found it

KurriKurri Fri 29-Mar-13 18:39:26

Ha - good title grin well done MAS

jchocchip Fri 29-Mar-13 18:44:00

Oh well done mas
bringing bunnies! smile smile busmile]
What shall we put on the trolley? hot cross buns anyone?

amberlight Fri 29-Mar-13 18:57:04


grin marking spot

topsyturner Fri 29-Mar-13 19:31:33

Fabulous !
Sauron approves ...

NedSchneebly Fri 29-Mar-13 19:44:27

Excellent title grin

Marking place. Currently drinking new black cherry bulmers cider. 'Tis rather tasty. . .

Think our w machine bearings have gone, it made a terrible grinding noise while's nearly 8 years old,so I guess i've worn it out - v good though - am ringing man tomorrow...

Gigondas Fri 29-Mar-13 20:01:11

Marking spot

Copthallresident Fri 29-Mar-13 22:12:19

goondog bows

AshokanFarewell Fri 29-Mar-13 23:19:48

Helloooo grin I shall try and reply to posts on the old thread here, I hope that's the done thing and I'm not breaking some unspoken Mumsnet rule!

I'm super pleased because I've made it to the end of day 10 and last time I saw him Dr W said if I could get to day ten we would count that as a success. I'm hoping to make it to day 14 but thinking that's not that likely at the mo as my skin is incredibly painful and I can barely sit still sadblush

Ginger don't worry about talking about yourself, I was just the same at first. It is all very new and you will have lots of questions. You'll soon find that you're an expert in all sorts of things you don't want to be an expert in. I've not had much vomiting with the chemo, mainly just nausea. I've vomited a few times but always straight after a meal and then once it's all out I'm fine, my oncologist didn't think that was from the chemo, just my new plumbing. That's with the capecitabine though.

I have some mini choc muffins for the trolley.

Ned I hope DS feels better soon.

Gig I've chosen "Pink Bunting" it's a fairly pale, quite dusky pink. I'm going to get some new bedding with flowers on and make it all lovely and a bit girly! Now I have Hotel California stuck in my head "you can check out any time you like, but you can never leave" definitely like the cancer club!

Amber I've read something before about total darkness at night, is that for everyone or for specific cancers only?

amberlight Sat 30-Mar-13 07:39:52

All cancers. The more the body shuts down at night, the slower cancer grows and more chance chemo etc has to attack it. There's more science to it than that, but bodies respond to light levels. If you must have light on, make it a nice dim orange light, not a bright white or blue-tinted one.

HerNextDoorAt21 Sat 30-Mar-13 08:32:59

Skulks in very shamefully I am a victim of reading and not replying then it getting way too long to catch up and thinking I'd better not post ...... 1000 apologies to all of you lovely ladies who have given me lots if support ...... topsy keeps me posted on important developments whilst consuming beverages in my kitchen !

gigs I can't believe where you find yourself at the moment and I sent you most unmumsnetty love and plenty of hugs.

As for me, a piece of tissue died on my graft from my back and I also have a hole on the other side of the graft. I have fat necrosis which means that tissue is breaking down and leaking out of the holes ...... Yum yum I hear you say !

I now have a very attractive vacuum pump in a handbag thing that I have to wear 24/7 to hopefully take away the fluid quicker and let the skin graft heal properly. It's very cumbersome to carry around but coming to this board makes me actually realise how flipping lucky I am.

I will endeavour to join in more ..... Make the most of the last freedom before u go back to work !

Copthallresident Sat 30-Mar-13 08:34:45

gigs I think both Cancerland and Hotel California have that you can never leave thing in common. Eleven years on and there are days I don't think about it and some very nice statistics to contemplate, infinitely better than the ones on Day 1 anyway, but my life has definitely changed forever in many ways, still don't have the same trust in life and my body I had before, and my body is definitely wounded in action, and even my insurance company agree I am not "cured" and need to trundle along for an annual check up.

But Hotel California is an earworm Make it go away!!

Copthallresident Sat 30-Mar-13 08:45:56

hnd Lovely to hear from you in person, this thread moves so quickly it is hard to keep up unless you are KK who is the star of the complete reply smile Sorry it is all taking so long. Friend had necrosis caused by chemo but has a lovely tit now smile The new handbag accessory sounds interesting, can you not get Victoria Beckham to go out with one, then you can be at the forefront of fashion?

is Topsy in your kitchen consuming beverages now? <fondles Damien who is here helping me find my Easter decorations, he is handy that way, he has some strange make up on though>

hnd welcome back- vacuum pump sounds most cumbersome but hope it sorts everything out and you're feeling ok...I saw your picture on fb with it and you looked v well -I couldn't trll which side was the surgery side either grin

topsyturner Sat 30-Mar-13 09:21:34


Copthallresident Sat 30-Mar-13 09:26:25


topsyturner Sat 30-Mar-13 10:47:52


Gigondas Sat 30-Mar-13 12:00:38

Morning all- very sore but managed to find comfortable way to lie (thanks to one of old breast feeding cushions) and on first day of going back to how I do pain meds so hopeful that will be easier now. I have found since gone into hospital I feel worse which may be cos mucked about with my pain meds but also psychological.

Hnd- sorry drains are so cumbersome but hope they sort it out. As copthall says , it is common to get infections so am sure will resolve it in the end.

Am worried by alliance between sauron and Damian..looking out of window for signs of the new era dawning (and waiting for dh to get back from soft play to take me for some medicinal dim sum).

topsyturner Sat 30-Mar-13 12:50:37

Mmm dim sum .....
Have some extra for me please !
Going to HNDs for pub night later .
Need the break as both the DC and DH are home and annoying me till at least Wednesday ...

KurriKurri Sat 30-Mar-13 13:36:14

Dashing in and waving to all - hope everyone is having a good weekend.
Asho - well done on reaching day ten reasonably unscathed - that is good going smile
Your new bedroom decor sound very pretty and fresh - I love dusky pink.

HND - do not stay away because you get behind in posts, - we want to see you, no one expects people to keep up with posts and news, - just dive in and tell us how you are doing. The vacuum pump accessory sounds useful but cumbersome, - sorry you are having such horrid wound problems - that must get you down a bit, but hopefully with the new pump action it will start to heal.

Copt - I suspect 'KK is star of the complete reply' is very kind and complimentary way of saying, 'KK is a long winded wittering old fool who is never off her computer' gringrin

Gig - sorry pain is 'being a pain' as it were, I'm sure emotional battering plays a part and makes pain worse, but once you have your op. hopefully you will feel a lot better in every way. <<hugs>> - what are the tiny Gigs up to today?

Waving to lovely Ned - hope you have a nice break over Easter.

I've just done my grocery shopping - for some reason Waitrose sent us a card to get 10% off shopping so we went there and got some nice stuff (usually a bit on the expensive side, but with the reduction not too bad)
I have brought ingredients for the 7000 calorie a slice Rocky road, so expect some on the trolley later. Also some nice cheeses - cracker and wensleydale Gromit anyone? grin

How does Sauron like being the star of his own thread topsy grin old lady dog would be jealous if she wasn't busy making a nest and hiding a biscuit in DH's fleece grin

It is snowing here AGAIN - if this goes on much longer I will lose what is left of my mind.

topsyturner Sat 30-Mar-13 13:49:35

Sauron is turning into a bit of a diva and demanding his own dressing room kk !

<holds plate out hopefully for rocky road>

I was having a thunk yesterday (dangerous territory I know) and I was thinking "shouldn't I be on herceptin now ?"
It would have been my mop up drug regime had I not had my miraculous combustion .
So shouldn't I still have it ?
Not wishing more drugs on myself , just don't want this bastard coming back !!!

KurriKurri Sat 30-Mar-13 13:58:48

Oh definitely check out the herceptin topsy - I think you have to have it within a certain time frame of chemo (quite a long time period I think but not unlimited), - it sounds as if they might have forgotten you were supposed to have it what with everything else that was happening.

Havent made the rocky road yet, you will have to wait. Put the plate down and sit nicely. grin

I presume Sauron is setting aside some time for signing Pawtographs <he he he!>

Gigondas Sat 30-Mar-13 14:03:51

Had extra dim sum for you topsy so you and hnd have extra wine for me wine.

Kurri - we also did a waitrose order cos of discount and have lots of nice stuff like cheese.

Little gigs have been to soft play, mini is now asleep and big is now making chocolate cakes and messing around with kinder egg toys (nanny has kindly come in today for a bit to help so is bearing the brunt of this).

Topsy-I would ask onc about herceptin. It might be something they think works best post chemo or jf a change hence why not on it. I know my onc doesn't like to waste drugs ifyswim when you are in remission (not that it gives you much comfort).

topsy it would do no harm to ask about Herceptin. I might be wrong but I think Herceptin can be given at any time and even on an ongoing basis. They may be saving it for if you come out of remission (which you won't I'm sure). It is mighty expensive. It is about £1,800 an infusion.

Nice to see you back hnd. Wound problems sounds annoying. Hopefully your vacuum thing will sort it quickly.

ash well done on getting so far with your chemo. That is one out of the way.

Sounds like you are having a nice relaxing day gigs. Hope your new regime sorts out your pain. The hospital bed probably didn't help the pain as they are always so blooming hard.

Hope everyone is having a nice day. topsy can I ask when you had your reduction was it your breast surgeon who did it or a plastic surgeon? When I was there on Tuesday my surgeon said if I lost a bit lots of weight I would a perfect candidate for a reduction but I didn't think to ask whether he did it. I worry if I have a lump too deep I won't feel it until too late.

AshokanFarewell Sat 30-Mar-13 16:43:33

Hello everyone,

KK is that the white choc rocky road from Sainsburys magazine? I think I have the same magazine, looks super yummy.

It's been snowing a tiny bit again this afternoon, it feels like winter will ever end and just adds to the weirdness of the past few months. I'm snuggled up under a blankie in front of the wood burner.

Been excitedly dancing around as now on day 11...yay! grin

Ex, god that feels weird, is away this weekend but next week we are going to have to start sorting out our things from our flat and getting things moved out sad trying not to think about it all too much for now, will just wait and see how things go with us being just friends.

HND that all sounds like a lot to deal with, I hope the pump helps and that you feel much better soon smile

I'm feeling quite brave as for some crazy reason I decided to pull my head out of the sand a bit and google FAP, which is the condition I probably have. I ventured onto Google Scholar, heaven knows why, and read some abstracts. It's all such cheerful stuff... grin

gig glad you enjoyed your dim sum and that the little gigs are having a fun day. Is big gig excited about Easter? Glad nanny is around so you can relax a bit more smile I hope your pain is sorted out soon.

KurriKurri Sat 30-Mar-13 17:05:27

yes that's the one Asho - I've got it cooling in the fridge as we speak grin
Actually mini eggs seem to be like gold dust atm and I couldn't get any, so I substituted maltesers, and guess what? - they are just as calorific and work very well grin

Good luck with sorting out your stuff - that's a sad job that has to be done sad can anyone go with you to give you a hand - your mum or someone?

AshokanFarewell Sat 30-Mar-13 17:17:04

Sounds amazing! I made a rocky road type thing with white and brown maltesers once, I must look out the recipe actually as it was very yummy grin

My parents will help with the actual moving but we need to decide who gets what of the shared stuff and things like that. I think it will be good to do it together really, in a sad way smile

My mum has made scones so I'll pop some of those on the trolley smile

topsyturner Sat 30-Mar-13 17:26:03

My breast surgeon is listed as a general surgeon Gracie but she did my mx and my reduction .
I have also been poked in the tummy and told if I get rid of that they will consider my reconstruction ...

thenightisyoung Sat 30-Mar-13 18:12:29

Hi everyone, I've been lurking on and off for a while and never seem to find the right time to post again. I'm now more than a year from my last op (for bowel cancer) and had a clear CT scan in January which is all good stuff. I have been back at work full-time for quite a while now and some days I almost feel normal gigs I am really sorry to read about all the shitty stuff you've been getting chucked at you recently. I know that there isn't any fair or unfair about this horrible disease but even still, it is so unfair.

I have a few Paul Hollywood recipe hot cross buns left to chuck on the fbs trolley if anyone can face any more!

thenightisyoung Sat 30-Mar-13 18:13:36

Sorry, rubbish punctuation in there!

KurriKurri Sat 30-Mar-13 18:19:49

Hello TheNight - lovely to see you again smile - excellent CT result, - that is brilliant. And great that you are back at work and getting back to normal again.

<helps self to one of Asho's mum's scones, I'll leave the HXbuns for others TheNight, as DD made the Paul Hollywood ones and I have stuffed myself with them had one or two already. It is a really yummy recipe.>

PenPerson Sat 30-Mar-13 18:50:31

Quick hello from me.

Not much to say apart from I have a sore throat and a cold and had a terrible night up with ds who has the same virus. Feeling a bit sorry for myself today and my skin is flaking off my face which looks very alarming.

I had fish and chips and ice cream and now feel a bit better.

Hope we all are well furnished with chocolate.

Thanks for setting this up MAS.

Thought I'd drop in. My kids have both been sick and now my mother (who is living with me for now) has laryngitis and congectivitis, just as I'm heading into the scary period. It's quite intimidating not to have an immune system! I don't know how seriously to take it, beyond lots of handwashing and hand gel. I know you've all been reassuring before, it's just quite scary as I need to be well enough to move...

Hope Gigs is healing up and Pen is restablising and welcome to ginger...

Thanks topsy that is good to know. I really like my surgeon so would be delighted if he could do it. Just need to shift about 3 stone now grin

sparkle It is typical that everyone comes down with something when our immunity is so low. Unfortunately even with handwashing, etc it is very hard to miss it. I am usually quite hardy but second chemo in my son had tonsillitis and within 2 days I had the same. The main thing to remember is to watch your temperature, if it goes up or down by 1 degree I think you need to phone your chemo unit. I was given mega antibiotics which did the job. Fingers crossed though you manage to avoid it.

Great CT results thenight. Glad you are doing well.

pen hope you and the littlepens feel better soon. Fish and chips sounds the perfect medicine.

<hurry up kurri with the rocky road I'm starving>

AshokanFarewell Sat 30-Mar-13 19:55:13

Hello TheNight I'm having chemo for bowel cancer at the mo so a bit behind you in the process. Brilliant CT result smile and I'm glad you're feeling more normal at least some of the time.

sparkle no advice I'm afraid apart from keep up the hand washing and I hope everyone gets well soon, without infecting you!

Pen I'm sorry you're feeling rough. Have you tried calendula cream for your skin? Pre-chemo I had rosacea and it got very dry and rough, the calendula sorted it out in a few days. I mixed in tea tree oil at first, for the rosacea, but since that cleared up I've just been using the cream on its own. I hope you and DS feel better soon, and that you have a better night tonight and get plenty of sleep.

I've got mouth ulcers and my wisdom teeth have all decided to rear their heads so I'm going to snuggle up in front of the telly with some ice cream! grin

gingeroots Sat 30-Mar-13 20:02:15

I'm wondering how coorong is as she doesn't seem to have been around for a while ?

I think she was due an op on the 25th just gone ?

Wishing all the poor sleepers a better night tonight ,at least it will seem an hour shorter !

I'm taking Night Time Kalms which do help a bit .

coorong Sat 30-Mar-13 20:26:13

Greetings all - and sorry to hear the trials that Gigs et al are facing. I survived my op (mx and LD reconstruction), but i don't do GAs well and the morphine made me sick too ... but at least the op went well and I'm home now. DH approves of the new breast wink even tho' it's various shades of yellow / / blue / purple ... Will wait for results in 2 weeks.
Great care from teh staff but I have to say my fellow patients were extraordinary. I like to chit chat - but the five other women who came and went would on my ward would not shut up from dawn til dusk. I can give youa detailed description of every medical procedure they all went through. I had ot shut my curtain because they kep quizzing me. It was like Alan Bennett talking heads in real life .... the only peace and quiet was when thy went to theatre but back from recovery .. ... it all started again.

gingeroots Sat 30-Mar-13 20:40:58

Oh so glad to get your update coorong.
So sorry about the sickness ...why didn't they give you anti sickness stuff ?

That description of your ward really made me smile .

When I had a hysterectomy a few years ago the girl in the bed next to me was holding a day long party with her entire extended family .The little ones were endlessly fiddling with the TV ,causing endless high pitched pinging ,and they all sat around eating MacDonalds .

Hope you're recovering with much TLC at home .

AshokanFarewell Sat 30-Mar-13 20:54:00

Hi coorong glad the op went well, and I hope you recover soon. I had the same problem with morphine, it's rotten sad fingers crossed for the results, will be thinking of you. Shame you didn't get much peace in hospital, hopefully things are calmer at home.

ginger sorry to hear you're having sleep problems, I hope that improves.

Sorry amber I forgot to say earlier, thank you for the light info smile I have to use the bathroom several times in the night so I have to turn bedroom light on (in case monsters are lurking...) and then the bathroom light too. Would only having (white) light for say 5 minutes at a time make much difference? In between bathroom visits it's very dark. If that's a problem I'd better start thinking of a solution as I expect this is how it's going to be for a while yet! I've had one full night of sleep since my first surgery in November hmm

gingeroots Sat 30-Mar-13 20:58:56

Ash - what a lot you're having to cope with .
I can't imagine .I've just googled FAP ....sounds no fun at all !

Best wishes to all ,apologies to those I've ignored in my posts .
I'm thinking of you all .

KurriKurri Sat 30-Mar-13 21:21:32

Rocky road is ready I may have eaten a piece or two already <flings what is left on the trolley> don't eat too much or you will feel sick (or so I've heard)

Sparkle - just echoing gracie - if your temp goes up at all ring your unit or the cancer ward if unit is closed. There is fair chance they will want you to go in if you get a temp, - so be prepared for that. But meanwhile, keep on with the hand washing etc. - You may very well be fine and avoid the bug smile

Coorong - glad the op is done and you are home, I know what you mean about the chatters though! - some people really like to 'share' grin

asho - that must be very tough having to get up for the bathroom several times every night - you must be shattered sad Sorry about the mouth ulcers too - they are a pain - rotten things.

waving to Ginger smile

remember the clocks go forward tonight everyone (don't know if that will be a good or bad thing for the sleep deprived confused)

amberlight Sat 30-Mar-13 21:24:06

Ginger, not a clue re the short bursts of light. No way you could have an orange glow bulb for night use?

AshokanFarewell Sat 30-Mar-13 21:50:28

ginger there's a slim (less than 1%) chance that it's not FAP but tbh I just try not to think about it! grin

KK I have to have a long lie in in the mornings to make up for it, this silly pouch thing just seems to be more active at night, yippee. But I sleep really deeply in between visits, especially from about 4am onwards. Oddly I've not had one sleepless night from worrying about any medical stuff, so that makes up for it really. Glad the rocky road was yummy, I've heard you can feel sick after too much neopolitan ice cream and chocolate sauce too grin

Thanks amber, I shall look into orange light bulbs!

waves to thenight hooray for clear scan ! and v nice to see you too coorong Have been out for a walk this pm,and shopping in the morning- bed soon.

smee Sun 31-Mar-13 06:32:05

A v excited smee checking in from Heathrow, as I have finally found a use for BC as had a tax refund from treatment days so did a mad thing and booked a last minute extraordinary trip. There will be a prize for whoever can guess where we're going, but have told Dh that if I don't get to watch a toucan from a hammock am going to sulk.

I will drink a huge toast to you all from lovely women. Won't be back for 12 days. Hugs from me xxx

coorong Sun 31-Mar-13 07:19:18

smee you're off to Mexico - in my former ornithological life that's where I saw my first (and only) Toucan - great birds - have a lovely time am v.jealous. I thought you weren't allowed to fly if you're having chemo....

PenPerson Sun 31-Mar-13 08:15:38

Happy Easter everyone !

smee have a fab time grin

amberlight Sun 31-Mar-13 08:35:05

Smee, fab!!! Give the toucan a wave from me...
Happy Easter all of you smile

topsyturner Sun 31-Mar-13 08:48:51

Smee !!!
You have very obviously run away to join a Pirate Ship !
ignores fact that it would be PARROTS and hammocks , not toucans

Happy Easter people !
I have woken up to find my house empty of husbands and children .
Think they may have been abducted by aliens !!!!!
or maybe just gone to mass

oh my smee !! how exciting grin ! have a wonderful and well deserved break !
topsy have they all gone to Mass ?

Copthallresident Sun 31-Mar-13 10:23:11

Happy Easter everyone <hiding in bed to avoid Easter bunny duties>

smee Is it Mexico or one of those Dominican Republic / Costa Rica places? Have a great time. envy

Had a very stressful day yesterday as no big Easter eggs in the whole of South West London . Bloody Tesco, Waitrose etc had cleared their shelves, having had them on them since January angry Finally tracked some down ina department store, went to pay - £120 for 3! Decided to go for the embarassed putting back as surely no one would pay £40 for an Easter egg, they weren't even that big..... So now theyhave the only big Easter eggs in the whole of South West London that cost under £40, a I Direction and a Thomas the Tank Engine egg blush They will appreciate the irony won't they??? Now you know why I am hiding .......

KK I would not call you a witterer who is on the computer all day because that would be the pot calling the kettle black, I am very impressed that you assimilate everyone's news and always have wise and caring words for all, whereas by the time I have wittered on for a sentence or two I have forgotten what I was going to type ......

DH now turning out the loft cupboards for the Easter deccies Damien and I still haven't found and is messing up my chaos system. <annoying>

Sparkle I picked up an infection on my first cycle of chemo but that was partly because the dose was too strong and wiped out my white blood cells and partly not being careful enough, went to a big family dinner party with lots of coughing and spluttering DCs, after that I was more careful, had injections to boost my white blood cells and there wasn't a repeat. As Gracie says if your temperature fluctuates at all get in touch with your team straight away, don't delay or think it is melodramatic . They will dispense anti biotics like sweets.

Pen Hope you feel better soon

Hope gigs has had a good night

Reuben had some amazing forcaccia on sale yesterday , with blueberries and cinnamon sugar , throws some on trolley.

Gigondas Sun 31-Mar-13 10:28:03

Snaffled Reuben's bread. Had bloody awful night (odd as pain under better control excerpt for cramp/itchy feeling in my hip which kept me awake).

No sleep probably main reason while I feel so utterly shit and hopeless. Little gigs gone out for the day and were very excited about eggs.

Smee have a great time (coorong generally not meant to travel abroad on chemo and within reason in the uk, but smee has chemo a while back).

bah about bad night gig - hope you get to rest and eat chocolate today.

Copthallresident Sun 31-Mar-13 11:13:47

gigs You are not utterly shit and hopeless, but lack of sleep is horrible and depressing. I am sending big hugs across the rooftops. I am in our loft so there are no roofs in the way. Have you got some chocolate / eggs for yourself? If not Bentalls have some nice cheap ones wink Do we need to put together some more visions, perhaps we can think up one involving James Mc Avoy as I think he would be a nice one to have on your side. Perhaps a home nations one Scotland v Wales, Katherine gets up to sing that song about Whales Wales and an entire first XV bear down on her, James McAvoy as hooker obviously, sean Connery in his sixties James Bond incarnation can be there too. David Tennant!! <sigh> Ewan Macgregor hmm Alan Cumming could do something very very evil........

I can hear all the helicopters practising for the boat race, at 4pm yesterday the river was flooding everywhere, the spectators are going to need waders!!

Gigondas Sun 31-Mar-13 11:39:45

I like that vision... I know sleeplessness and not eating( have found some breakfast) are contributory. Sitting in bed listening to radio 4 which is cheering me up. Going to do some reading for Ou as that helps take my mind off things.

PenPerson Sun 31-Mar-13 12:16:52

lack of sleep is hideous makes all things seem out of proportion. Hope you can get some rest today gigs

I had a triumph today and have just been for a walk in the woods with the hounds. Managed about a mile with not too much difficulty. Dh and I have grand plans to do the SW coast path starting with Dorset. Today I feel like I will get back to normal.

Off to my parents for a roast later, my mum cannot cook so it wont be pretty.

PenPerson Sun 31-Mar-13 12:17:33

copt loving your visions !

AshokanFarewell Sun 31-Mar-13 12:38:11

Morning all,

Happy Easter! I hope everyone has lots of yummy chocolate.

I had a particularly bad night and feeling a bit sorry for myself as I'm not well enough to go to our Easter family gathering. Especially disappointed as I had made bunny ears for all my little, and big, cousins to wear. I shall just wear my own and laze on the sofa all day grin < that's me in my bunny ears. I got a Guylian egg with seashells so I shall be gobbling that up too! Yum yum yum.

gigs sorry you're feeling rubbish, hopefully you have some chocolate to nibble? You're not hopeless or shit but you are going through a lot so it is bound to feel a bit overwhelming. Liking the new vision, especially Ewan McGregor grin

smee have a fantastic trip! Are you off to the Caribbean? I hope you see lots of toucans and enjoy relaxing in your hammock! grin

copt oops about the eggs! Chocolate is chocolate though so hopefully they will just be grateful to have some. £40 for an egg?! I don't blame you for putting them back!

topsy does that mean you have all the chocolate to yourself?!

amber I've been looking for an orange lightbulb and found this which looks fun and could be white for daytime then red/orange at night, plus it does loads of different colours and effects!

AshokanFarewell Sun 31-Mar-13 12:40:09

pen cross posted, well done on your walk and glad you're starting to feel more normal again smile enjoy your day with your parents, I hope the roast isn't too disastrous!

KurriKurri Sun 31-Mar-13 14:39:04

Afternoon all smile

I turn my back for five minutes and Smee has run away to join the circus, grin watch out for exploding cars and low flying acrobats Smee! - seriously is it Mexico? - how exciting, you lucky thing - have a fabulous time smile

I love those chocolate seashells Asho, - yum - am shocked at the £40 easter eggs Copt - but there seems to have been a run on eggs this year - are people stocking up in case the economy goes even more tits up and we all have to survive on chocolate??? grin
Asho - sorry you are feeling to poorly to go to the Easter celebrations though - what a shame sad

I got DD a plain one from M & S and a little bag of mini eggs. but she played organ for the Easter service at a local church this morning and they gave her a big egg as a thank you too! - so she had better share is very lucky!

Gigs - sleeplessness is the absolute pits, it will affect everything you try to do and how you feel, - massive sympathies, it is very debilitating. You are not hopeless and shit at all (((hugs))) xx

Pen - well done on your walk - a mile is very good going smile - and coastal walk sounds a great idea, - I've done bits of the Dorset Coastal walks over the years and it is so beautiful (although I may be biased grin). When I was getting over my chemo, I remember going down to Dancing Ledge (took me hours - I was walking with a stick at the time!) and sitting up on the rocks looking out at the sea - it kept me sane, I love the coast.

I have done a load of gardening this morning, I may also have nattered on the phone with a friend for an hour, but that doesn't sound quite so impressive!, cleaned the kitchen, and I'm thinking of making some onion chutney later. Then I will be cuddling up on the sofa and watching the very lovely John Simm in The village tonight no he doesn't look grubby Smee, you are deluded and mistaken grin

waving to MAS and topsy and everyone else I've missed xx

Oh - this will sound mad, but while I was pottering in my greenhouse, planting my seeds, I could 'feel' my Dad's presence as if he was with me - I don't believe in any of that kind of thing really, and I know it is just because he was a great gardener and we spent a lot of time in the garden together when I was a child, but it was lovely, and now I have made myself cry silly old fool

coorong Sun 31-Mar-13 14:39:20

Can we add johnnycake Wilkins to our rugby team? ..... And you can get that French man who looks like a gorilla to take out the Jenkins woman .....

Sorry to hear ash and gig aren't feeling the best. The suns out this end of the country - maybe a few rays and staring at the bits of blue sky will cheer you up - or perhaps [one arm wrestling a 10kg Belgian Easter egg onto the trolley], this (clunk) will cheer you up a bit ...... grin,

Have fluid sloshing round my back .... Yucko - hopefully it will drain itself, but my underarm (where they did the node biopsy) feels and looks enormous - please share stories of how long yours returned to normal - am hoping only temporary lymphodaema in underarm from all the prodding

KurriKurri Sun 31-Mar-13 14:49:33

coorong - I had seroma after my mastectomy, - got it on a Friday and it had cleared itself by the Monday (I only remember because BCN said come to the seroma clinic on Monday if it's still there) but I didn't have it all that badly - felt like I had a rolled up newspaper under my arm!

Has your hospital got a seroma clinic? - it might be worth going along and getting it drained if it is bothering you (although I am guessing that clinics are not open over the Easter break - isn't it sod's law that you always get these things at weekends/bank holiday etc!)

Gigondas Sun 31-Mar-13 14:57:39

Agree with kurriot advice to get it checked out- also watch out if you start feeling hot or ill as can get infected.

I am not allowed to tell my seroma story as it is puss porn of the highest order when people are eating Easter eggs.

jchocchip Sun 31-Mar-13 15:18:26

Happy Easter Everyone smile I had the same problem with Easter eggs this year - none to be had on Thursday in home bargains or on Saturday in ASDA, ended up buying tiny Thomas, Fireman Sam and LaaLaLoopsy ? in the Co op yesterday! Fortunately had one large one (traidcraft) on order with a friend - and 3 bags of mini eggs bought earlier - but no cream eggs anywhere. Should have bought some last week when they were 10 for a £ in home bargains but didn't think they would run out before Easter!! I don't want to buy Easter Eggs immediately after Christmas! I want to buy them at Easter until they run out <stamps foot emoticon>

Did my turn in Junior Church and despite lack of planning had a lovely time making shiney egg shaped decorations with a bit of colouring and singing...

Have broken my lent chocolate fast with a bar of Lindt Lindor grin. Hope you are all enjoying a chocolatey Easter Day.

PenPerson Sun 31-Mar-13 15:20:39

Oh I like a bit of pus porn. Please tell it will help with my diet I am starting this week.

kk we are planning on Dancing Ledge in a couple of weeks. We may be forced into a vist to the Square and Compass too which would be a most unfortunate but necessary part of my rehabilitation. When you are down these parts again we will have to get together with ned for a lunch !

KurriKurri Sun 31-Mar-13 15:22:52

I would love a meet up Pen - hope to be down in the summer certainly, if not before. smile

jchocchip Sun 31-Mar-13 15:27:52

Where can smee be? Well jealous of the Toucan!!

KurriKurri Sun 31-Mar-13 16:50:14

I've had a Smee brainwave - I didn't take in the hammock info, - so I'm revising my guess from 'the circus' to 'a cruise on the Panama Canal' - I'm so right , I bet I am, <holds out hand for prize>

thenightisyoung Sun 31-Mar-13 18:38:27

Happy Easter everyone grin

I have eaten so much today I cannot move. I am waiting to be brought tea in the hope that it will wash all the food away. I had a vague notion of going for a run today but I think that will have to wait till tomorrow.

Sorry that Gig and Ash are feeling rough today, I hope have at least managed to have a relaxing afternoon.

Ash I was lucky and did not have to have chemo and other than losing about a foot and a half of my colon the rest is intact. You seem to be having a rough old ride of it to say the least!

Smee enjoy the Toucans smile

just checking in to say we've had a v nice day- huge lunch cooked by dh at parents- T ate 7 bacon wrapped sausages and an entire jar of cranberry sauce - we had champagne and pudding wine, chocolate mousse made by me (my first bit of chocolate in weeks !) Am being quite restrained and have just had 1 creme egg.
I love the Dorset coast path- we used to stay at Ringstead Bay and dh would often walk from there to Lulworth. As young people we'd walk at night across the cliff tops to the pub at Osmington or lie on the beach and look at the stars.
Hope those not feeling tip top feel better soon.

coorong Sun 31-Mar-13 19:41:47

sorry to harp on guys, but do you think iburprofen is a good or bad idea with mild seroma?

am full of roast dinner cooked by dh and excitement of boat race

coorong Sun 31-Mar-13 19:42:49

MIL is in Dorset - and the coast path is something we've yet to tackle (girls too young) but it looks very nice

topsyturner Sun 31-Mar-13 21:23:32

Coorong ibuprofen shouldn't do any harm with seromas .
Don't quote me on this as I'm not a medic , but I do recall people being prescribed a daily dose of it for its anti inflammatory properties .
But you shouldn't take anti inflams if you are asthmatic apparently .

Had massive roast turkey and ham dinner at Granny's today .
We also had starters of Italian salami and ham , and olives , ciabatta and balsamic .
Followed by a home made pavlova for pudding .

I have a bit of a cheek for feeling slightly peckish now don't I ???

coorong Sun 31-Mar-13 21:49:30

Thanks topsy -your lunch sounds good - but peckish already ! I guess it is Easter... Next best thing to Christmas ...

AshokanFarewell Sun 31-Mar-13 21:53:39

thenight still a fairly substantial amount of colon! Hopefully that doesn't make too much difference to everyday life though? Pleased you managed to avoid chemo! smile I've had my whole colon and rectum removed, apart from the very last few cm and I now have an ileo anal pouch, which is usually not that much of a problem, but is behaving very badly today angry

I'm feeling utterly butterly rubbish and temp is on its way up so hopefully in stays under 38 or I will have to venture in to hosp sad on the plus side this is day 12!

MAS sounds like a fabulous day!

gigs hope you feel better this evening.

Sorry everyone am exhausted so shall leave it here. I hope everyone has had a lovely day smile

So stuffed that we didn't bother with any supper- just a few mini eggs and I had an apple so I could take my meds:-). grin

PenPerson Mon 01-Apr-13 08:31:47

Hope you are feeling ok today ash and your temperature did not go up any more.

jchocchip Mon 01-Apr-13 08:35:49

Morning pen
Hope everyone had some sleep. Sh is still snoring so I'll have to go make my own brew smile Happy Easter Monday everyone smile

jchocchip Mon 01-Apr-13 08:36:43

Obv it is Dh not Sh! grin

jchocchip Mon 01-Apr-13 08:46:54

Ash you are doing so well - they said 10 days would be a successful cycle didn't they? Hope your pouch behaves today.

I felt a bit strange last night. Too much sugar I think! Will try and do a walk with the dcs today.

AshokanFarewell Mon 01-Apr-13 11:02:50

Morning all, thank you for the good wishes, temp came down grin (better make the most of the bunny smiles before they are all gone!)

I'm still feeling rough and pouch has not yet calmed down <stern face at tummy> oddly it does not respond to any of instructions or tellings off hmm

I'm going to call it a day with the chemo - yes jane ten days was a successful cycle, and twelve days is better, although can half imagine Dr W pretending he never said that!!

Jane I hope you are feeling less strange this morning and that you all have a lovely walk smile

People on my Facebook feed keep posting this picture thing about cancer, you know the ones where it says share this if you care etc etc, but it's all about how people with cancer fight battles and win or lose etc. Does anyone else find that disrespectful/annoying?

I feel that I got lucky, my cancer was found in time, something could be done about it, the only battle was between the medicine/science and cancer, it's not anything I've done or not done, or because I'm strong or brave, and people who die fom cancer certainly aren't weak or not "fighting" hard enough. I wrote a long post about it and was going to put it on my wall but then I didn't want to upset you all if you disagreed with me! smile

HerNextDoorAt21 Mon 01-Apr-13 11:03:17

Morning everyone ! Anyone want two children ? They are driving me insane already today. My DH has been at work Friday Saturday and today and he leaves the house at 7am and comes home about 9pm ... admittedly only 3 days per week but it does feel like a marathon when I am not the best myself <pity party here>.

I am waiting for the District Nurse to come and redress the vac pump site so we can go out somewhere. Cant wait to get dressings done at the clinic as sitting around waiting is tiresome !

coorong I am so sorry I didn't pop by earlier, I am the one who had the LD flap recon in January. I have been terribly unlucky and had problems from day one but am feeling Ok now - another girl i met in hospital who had surgery one day before me is fine now, so I hope you take the same path.

Sloshing is common - did the hospital mention that it could be aspirated ? I had this done 3 times and it does provide relief (once on the front and twice on the back). I also had a huge swelling under my arm where they brought the back muscle round but it was like a soggy sponge and no where to draw fluid from so it eventually went away. I would ring the breast care nurses or surgeons clinic and try and get seen to see if the fluid can be relieved.

topsy was round for pub night with another one of our neighbours .... we shall call her HerFromTheBOttomOfTheGarden ..... we had a very funny night and no doubt I will be blamed for hangovers etc etc .... I cooked Indian appetisers ..... mmmmm there are a few left, I think I'll eat them chuck them on the FBS trolley. Oh bugger, forgot topsy has a key to my house and is quite partial to the aforementioned snacks - better get them quick !

Hope everyone had a lovely easter !

PenPerson Mon 01-Apr-13 11:12:46

Yes I completely agree with you ash and get all annoyed at the cancer adverts and the whole 'fighting it' thing. It is as if we have some sort if control over it . You don't see it with other diseases like Parkinson's , multiple sclerosis, motor neurone disease etc etc. I feel like ranting about it too but am trying to keep my cancer Tourette's under control. Not sure if there is anything we can do but I agree 100% and just give people a stare if they call me brave. I think people reactions are all about how scared they are about getting the illness themselves.

hnd I am fed up with my dc too. Only 2 weeks of the holiday to go grin

Copthallresident Mon 01-Apr-13 11:36:15

The great Easter egg famine of 2013? Why? I totally agree with jchoc I need my eggs available on Easter Saturday not Jan because I leave everything to the last minute Shops are now of course full of croped trousers and T shirts for lounging in all the glorious sunny weather confused Girls appreciated the irony though but are insisting I take the 1direction bag that came with the egg out with me and have Harry tatooed on my arm, apparently he goes for older women..... Helped by having managed to find 5 packs of mini eggs for traditional Easter Egg hunt, only one traditional sibling fight scuffle and traditional champagne and chocolate eating in front of Bridget Jones evening. We also went to see Trance late afternoon before a giant seafood platter at Loch Fyne, strange film, very clever but this is second time we have seen James McAvoy not being the nicest hmm, at least this time he didn't keep vomiting, murdering children and getting his head chopped off like he did in MacBeth. Still all the better for having on your team to effect a really bad end for Katherine Jenkins.

coorong Johnny and his thighs are in deffo, he is not actually Scottish but Newcastle is near enough, or maybe we make it a Lion's team.

* pusporn alert * grin Yes I had a very persistent seroma under my arm that they drained 3 or 4 weeks running, but it did eventually heal. Was treated by a Dr Grumpy who grumped that it was my own fault for doing too much, especially driving, but perhaps that was just him having a go. Also I must have been one of the last to have all my lymph nodes removed, sentinal node was just being trialled. However have managed to avoid lymphodaema.

KK I know exactly what you mean. I always feel very close to my friend when I walk in Kew Gardens, especially when the bluebells are out in the woods as we used to take our toddlers there together and always made sure to go when the bluebells were out each year and discuss life the universe and everything. Powerful memories.

Are you planting seeds? Is your greenhouse heated? I am still waiting as we have frosts predicted every night this week but everything is going to be so behind angry

hope gigs and ash had a good night . Ash remember the worse you feel, the more the Cancer has been zapped.

smile to everyone Happy Easter Monday!

Copthallresident Mon 01-Apr-13 11:57:46

Xposted Ash feel free to post long rant, you are so right about the fighting / brave rhetoric, and worse still the . "lost after a long brave fight with the illness" as if it is someone's fault, not this nasty buggering disease. Perhaps we should start our own Facebook post that tells it like it is. Of course those of us with Breast Cancer also get lots of nice pink candy floss celebrity endorsed branding to disguise what a nasty mutilating bugger it is. When my friend had bowel cancer we used to joke about starting a * pooporn alert * brown ribbon movement. Am just on a gentle seethe at the moment with all the pink fighting talk Race for Life posters,come October and BC awareness month I rise to the boil, or just don't go anywhere I'll see any of the posters or magazine articles. At the Royal Marsden even the mamogram rooms are pink and plastered with it, whilst the rest of the hospital is tasteful beige!!

I did like the Facebook thing with the woman with the double mastectomy though, that was a bit of reality.

thenightisyoung Mon 01-Apr-13 12:19:58

Ash glad to hear you're feeling a bit better today. I will severely wag my finger at your pouch and tell it to start behaving. I totally agree with you about the whole battling cancer thing. As you say, it's more often than not down to a combination of luck and medical science. The thing I find most offensive is the implication in there that if your cancer recurs or gets worse there is some sort of blame attached - maybe you didn't fight hard enough

thenightisyoung Mon 01-Apr-13 12:30:22

cross posted with copt, arf at brown ribbon movement grin

Morning all.

grin brown ribbon movement.

How are you is morning gigs? Hope you got a restful night.

ash glad the temp is going down but sorry you are feeling so rubbish. Chemo is definitely no fun.

I really need to get my backside going. Been practising ballet buns today - I really am rubbish with hair and I have to make DS1 a birthday cake today. He is 16 tomorrow.

Hopefully I will catch up later but thinking of you all.

Copthallresident Mon 01-Apr-13 12:49:19

I should add for balance that the rhetoric and pink candy floss does clearly provide comfort to a lot of people, both those who have had Cancer and those who have lost people. I just once had Cancer tourettes with people I didn't know people I know I bore silly with it who ambushed me on a dogwalk dressed from head to foot in pink with feather boas, wig, the lot and badges that said who they had lost as if it gave them brownie points. I snapped that since I had had BC , i would not give money to any charity that marketed all the pink stuff because it had no relevance to my experience of the disease. One of them rightly pointed out that she was just making use of her grief in a positive way (agh the positive word) and I felt guilty. What I object to is that once you get BC it is as if you have to embrace it, I have never worn candy pink in my life (there are fb pics on my profile showing how my mother scarred me for life cutting my hair short and making me wear boy's clothes - she says it was trendy hmm ) let alone worn a feather boa, why would I start at 43!!

Ash you may not have been around when I last posted this but I love this article

jchocchip Mon 01-Apr-13 13:18:59

I like pink but don't particularly like the whole pink ribbon culture. I do identify with parts of that article. I am not defined by my cancer but it has given me a bit of a kick to do things now rather than procrastinating...

Gigondas Mon 01-Apr-13 13:36:42

Waves lazily to all from bed of pillows. Feeling bit better as had slightly better night but still very disrupted. Think might just pop round to copthall for a brew next time as some of it is have had disturbed nights for ages.

I am inwardly nodding at the guff about battling cancer (can't actually nod cos of my neck). I am particularly sensitive at moment as people get very emotive when mention it and I have had some shit about diet. As someone says, this is about people's own fears and issues (tbh this board can be dreadful- there is one quite well known poster I like who is quite vocal about how people are generally scared of death and illness- she is right).

Gracie - do you use those little fine elastic bands to put dd hair in pony tail? It's easier if start from that then Twist it round (then use tons of hairspray - remembers this from own dancing show days).

AshokanFarewell Mon 01-Apr-13 13:37:31

cop love the brown ribbon movement! Although I have to confess I got a bit grumpy when I got my chemo diary, my chemo is for breast or bowel and the breast bit was in pink and the bowel bit in a disgusting beige browny colour grin I do find the pink a bit overwhelming though, and it's on everything! It must be hard for men who get breast cancer as all the stuff related to it is so "girly". Personally my cancer experience has made me feel very unfeminine, almost not even human at times, like I was just a big walking bowel hmm so I can't imagine breast cancer makes people feel very girly and pink either! It's a shame the hospitals are jumping on board with it too, I'm sure they mean well but it's not like they paint the colorectal wards brown or the prostate cancer rooms blue or anything.

I'd like to do some kind of fundraising walk after my treatment, to sort of mark the end of it all and give something back, but it took me ages to find one that wasn't women only, I want my dad to be able to come along too confused

I also know a couple of people who made their relative's cancer all about them by going on loads of Race for Life type events with her name on their backs and going on and on about how upsetting it was for them, when she was quite positive about it all and didn't want that kind of attention, and they weren't even close to her before her illness! She's well now and they've gone back to not really talking to her confused

Thanks for the article I shall have a read, and thanks for reminding me why I feel so crap, I have cheered up a bit as hopefully any rogue cells have been completely frazzled grin

gracie what kind of cake are you making? Hope it goes well. My ballet teacher used to tell my mum off as she was so rubbish at doing buns, I had to go early for exams and shows so that the teacher could do mine instead!

KK forgot to post yesterday, that sounds lovely about your dad. I'm glad you were able to feel close to him smile I'm not really sure what I believe about anything but a while after my Nana died I had a dream where she told me not to be sad as she had had a long and happy life and she was at peace now, it was very comforting and not like any dream I've ever had before smile

pen yes I think it's definitely partly fear, it's such a scary and unpredictable illness. My doctors keep saying how brave I am, I think they expect me to be weeping and wailing all over the place, but I'm quite matter of fact about it all. That's just how I am, it's hardly brave, it's not like I volunteered to have cancer so someone else didn't have to or anything like that! I think I've been guilty in the past of telling people how brave they are though blush

thenight your finger wagging may have worked, pouch has finally decided to calm down a bit. I am having a little procedure on Wednesday that should help it, plus it's under GA so at least I'll get a nice little sleep grin

Copthallresident Mon 01-Apr-13 14:15:38

Ash I agree you just cope in your own style and way. All this Cancer rhetoric, you would think nasty cowardly people don't get Cancer grin Perhaps THAT is the secret of prevention!!

I had one of those dreams around six months after my friend died. We were sat on a Greek beach as the sun set, no words just a tremendous feeling of contentment and peace. I have since read that it is quite common, a way of your subconscious signalling that you have come to terms with it.

Gigs I agree entirely about illness and death. One of the best things about my support group we all agreed was that we went up and looked over the edge as it were, talked about how we felt about death and dying, something we couldn't inflict on those who cared about us. Once you have done that you realise that the reality is a lot less scary than all the perceptions and feelings that we are raised with. I had a very strange experience just before another friend (we are an unlucky group of friends) died. He had already had a cardiac arrest (that was when he was resuscitated by Douglas Hodge) and it was misdiagnosed by a Italian hospital. They had been to stay the day before he died. He and I were never alone to talk about it, and he wasn't one for talking about his feelings anyway but as they left he looked into my eyes after he hugged me goodbye and I could just tell he was communicating a common understanding, that he had looked over the edge too. Or maybe that is my subconscious comforting me too. Of course buggering bugger that I didn't just drive him to the nearest cardiologist and no matter that it was a Bank Holiday.........

Copthallresident Mon 01-Apr-13 14:17:35

Oh and gigs do brew across the rooftops, if it is any time before 4am chances are I am racing across a Rugby field flanked by Damien, James etc grin

coorong Mon 01-Apr-13 14:53:04

morning all fro the bright and breezy (and freezing) north - god the cold weather is driving me nuts

Jennifer Saunders doesn't talk about her breast cancer, but I do recall her commenting that she'd punch / ignore anyone who used the words "fight", "brave" or "positive". I like her. Having spoken to lots of people, it's really a chronic illness, and you don't hear people "battling asthma" or diabetes. I guess it stems from all those nice hollywood movies about matriarchs who guide their families and then die in soft focus, (roll credits).

nuff said - glad you're feeling better ash.

Am off to hospital tomorrow (Wythenshaw - pink rating 1/10 for clinic), to have my back decanted. Vintage '13 anyone?

topsyturner Mon 01-Apr-13 14:58:10

Oh feck it !
I just wrote and posted a very brave and inspirationally pink message .
And mumsnet ate it !!!!

It's all your fault you Nest of Vipers !!!

PenPerson Mon 01-Apr-13 15:01:50

Can you believe that on the fantastic status from ash I copied some fucker has commented about a friend 'fighting cancer'. I am sitting on my hands to control myself. I think they have spectacularly missed the point. I feel like deleting her comment and blocking her.

Gigondas Mon 01-Apr-13 15:20:22

We have responded pen. grin

Part of reason I don't post about cancer on fb is for this reason (not that there is any secret in rl).

PenPerson Mon 01-Apr-13 15:29:58

Thank you for your comments, I have defriended her now as she actually sent me a message about how upset she is about her friend. I did not respond.
I have not put anything cancer related on my FB before and most of my colleagues and friends do not actually know I have it. Like gigs it is not a secret. I have a wide range of people on fb and don't want any attention about it. I will make sure my colleagues all know before I return to work though as I have a very visible scar and don't want inappropriate questions.

Copthallresident Mon 01-Apr-13 15:39:53

Blimey it is all kicking off on Facebook. We are now the Cancer tourettes attack dogs!!

gigs blush I must admit to watching 'how to do a perfect ballet bun' youtube video and still failing miserably. I bought a 'donut' but haven't a clue what to do with her fringe.

Cake is cooling.

Well done Pen. You are very brave grin wink

Gigondas Mon 01-Apr-13 15:42:48

I wish there was an eye roll emoticon for that kind of response.

PenPerson Mon 01-Apr-13 15:43:05

Not as brave as you grin grin

Copthallresident Mon 01-Apr-13 15:47:18

gracie the joys of dance hair! Thankfully my DDs elephant footed flirtation with dancing was brief as they both have ludicrously thick hair, especially DD2, they once had to stick her groups dance later in the programme because the teacher had not allowed enough time to tame it!!! One teacher at end of tether, grips flying everywhere and one huge bun on top of little head. I stood no chance...........

Copthallresident Mon 01-Apr-13 15:47:46

but I was very brave....grin

thenightisyoung Mon 01-Apr-13 15:50:48

Ah, ballet buns, that makes me feel very nostalgic smile. I found that hair grips and a tin of hairspray just about kept the fringe slicked back!

was hoping ballet buns might be edible...
Oh the fighting thing gets on my nerves so much - have copied the post and put on my own page. The pinkness irks me too..brown ribbon is a great idea grin

jchocchip Mon 01-Apr-13 17:21:52

took me a couple of seconds to realise I couldn't eat ballet buns too smile

grin !
kk meant to say, how lovely to feel your dad's presence- am sure he is always with you.

KurriKurri Mon 01-Apr-13 17:38:43

Afternoon all - sorry have loads of posts to catch up with, - I got up late after a rather bad night with old lady dog, who had several seizures during the night sad so of course I didn't sleep, and kept leaping out of bed every time she made a noise. She seems a bit better this morning. I am feeling very stressed and emotional about it all sadsad

Totally agree with fuck off to all talk of 'fighting' 'positive thinking' and breast cancer is pink and fluffly. BC and all other cancers suck big time, whether they have been assigned their own colour or not!, - there seem to be an awful lots of cancer groupies (for want of a better expression!) out there who go in for all this 'fighting' talk and forcing pinkness and positivity onto others. Bog off is my general feeling on the matter.

Maybe we could design a 'chemo' ribbon with a fabric representation of vomit on one side and diarrhoea on the other, with some bits of flaky skin hanging off for good measure grin

I am meeting DS for lunch tomorrow, DDIL is going for a day out with her girl friends - who are treating her for her birthday, so I will hand over my gifts for her to him.
He told me that on Thursday night he was invited to take part in 'play in a day' in a Gt Yarmouth theatre. basically he went to the theatre on thursday evening, sat up all night and wrote a play, gave it to the actors at 8 am Friday morning, they rehearse it and it is performed on Friday evening! - he said it was really good fun

Hope HND and topsy are not too hungover and filled with Indian snacks today grin

gracie - good luck with ballet hair, - it was always completely beyond me, plus DD has that very fine wispy type hair that won't behave, so I'd have to ram hundreds of grips into it.

Copt - I have planted my seeds because it was getting so late - I kept putting it off, but was starting to worry they'd never come up in time for summer. I have a paraffin heater which I stick in there on very cold nights, and cover them with fleece if I suspect it will be frosty. Luckily they are all things that germinate at lowish temps, and some I planted a couple of weeks back are coming up now.

Coorong - good luck with the decantation [?] grin

Asho - hope you feel a bit better soon, and temp behaves itself xx

Keep updating on the FB fisticuffs folks, - I want to know all the details!

Anyway love to all - I shall go back and read through your posts properly now.

KurriKurri Mon 01-Apr-13 17:40:54

Oh - nearly forgot - i got some Green and Blacks in Waitrose on offer on Saturday, so will put some on the trolley. I have burnt toffee dark choc, cereal milk choc. and sea salt milk choc. All v. yummy.

NedSchneebly Mon 01-Apr-13 18:45:42

evening lovelies smile

I am with you on the pink-ness of BC, like its an off-shoot of Hello Kitty or some new Barbie range. Chemo Barbie? wrecked veins, washed out pealy skin, ald head, vomit bucket and bottle of lactulose as accessories. . . don't think it will catch on somehow.

Had a breezy but fun walk on Charmouth beach today. Hunted for fossils and DS got slightly damp feet jumping about by the water. Blew a few cobwebs away and worked off some of Easter excesses. Met up with ILs for lunch - who were reasonably well behaved, whcih was nice.

ashokan how you this evening? OK I hope, lovely. Have sent you a FB friend request. Its me, not some madwoman. . . OK, I'm not too mad.

copt sent you FB friend thing too.

pen how's the skin? Thinking of you.

HND what news on your pump? Hope nurse thought twas doing its job?

MAS your choc -free fundraising total is AWESOME! well done you! I bet that first mouthful tasted amazing, especially knowing you'd done so much good. Hats off to you, lovely lady!

Must think about putting grubby DS in the bath. Waves to all, and I'll be back later x x x x

KurriKurri Mon 01-Apr-13 18:49:15

Ooh fossil hunting on Charmouth Ned - you lucky thing - I love it there. Did you find anything interesting?

KurriKurri Mon 01-Apr-13 18:53:00

DD has just come into the room and said 'did you know you've been wearing your jumper back to front all day mum??' grin - its a v-neck too! <senile emoticon>

gingeroots Mon 01-Apr-13 19:16:05

You're all very fluffy and jolly .

Which makes it hard when you only have dark thoughts and fear .

Like there's pressure to only post if you're able to frame it as a joke .

Just saying .

HerNextDoorAt21 Mon 01-Apr-13 19:17:51

Evening all, the district nurse (eventually) arrived .... Her lateness had caused my 9yo son who has Aspergers to have several meltdowns as he couldn't understand why we couldn't go out ..... It has been a bit of a tough day. She brought along another nurse to train in this new vac pump system so it was another prolonged session ! There is around 250ml of broken down blood tinged tissue coming away every 3 days ...... It is PINk and could easily be used to throw over the Barbie cancer brigade .... Lol. It is working great this week and the tissue viability nurses are going to dress the other wound on Friday so they are both under vacuum and not messy dressings. The pump is a pain in the Arse but at least am not yucky and mucky.

Not seen topsy all day but then all her family are off ..... Hope she's not buried them under the back garden, pig/dog would probably sign them up again ! I think we will both be glad to get the regrets back to school and our regular coffee mornings back in action !

PenPerson Mon 01-Apr-13 19:22:13

ginger it is a roller coaster of emotions. I posted endless horrible dark things during my diagnosis and treatment, I was terrified of surgery and the ladies here helped me through it so never feel like you can't say what you are feeling. We are all at different stages of our treatment and have all been through it.
Please don't feel like you have to be fluffy and funny here.

Gigondas Mon 01-Apr-13 19:23:05

Ginger - fluffy and jolly is definitely not how I feel some of the time (4am yesterday Mornjng I was seriously thinking what the point of carrying on was when you are living in pain and anxiety). I think difference is that I don't always deal with the bad parts by posting on here.

That doesn't mean you can't or that everyone on this board hasn't felt worried,angry, hopeless, scared etc at some point. Please do share your feelings as sounds like you need someone to talk to.

Gigondas Mon 01-Apr-13 19:25:50

Also can I just ask ginger have you had your Easter weekend disrupted cos of all this ? Also have you been googling/ looking at horrid news reports that you are drawn to tho know you shouldn't?

I may be wildly wrong but I know that contributes to me feeling sad.

KurriKurri Mon 01-Apr-13 19:27:29

Ginger - you may have a point, and I'm really sorry you feel that way, please don't feel you can't post anything darker, have looked at my last post and presumably it is exactly what you mean.

I think perhaps being a little further down the path than others, I possibly have more jokey moments, and if it stops people finding the support they need on this thread, then it is unacceptable.

I will bow out for a while


PenPerson Mon 01-Apr-13 19:55:13

kk please don't bow out. I find the jokey tone really refreshing and it makes me feel that if you can all joke and be normal I will be able to do that too. As my surgery is behind me and I am getting over my 1st treatment I am feeling ok ish now but I have a lot of hurdles to overcome in the next few months so will be on that roller coaster again soon.
I also know that if I post a bleak post when I am in a dip someone will wade in quickly to help me out.
Someone always remembers appointment / scans etc and asks how they went.
ginger please let us know how you are

NedSchneebly Mon 01-Apr-13 20:12:21

ginger I hear what you're saying, I really do. If you read back through earlier threads you will see that we have all had dark moments full of fear, anger, confusion, rage, terror and every emotion inbetween. I think you will see that we intersperse humour with mutual support, respect and help for each other, in equal measure. The jokey posts are sometimes a way of coping, or just a reflection of how we feel on any given moment. But that is not to say that we cannot be more 'serious' and offer valuable advice and support when someone needs it.

I would not have got through 2012 with my sanity intact without the ladies here, and I really strongly feel that we can drop everything and be there for each other.

Please, please, please post how you are feeling - chances are we will all have felt the same way at some point on our own cancer journey. We can hold your hand while you travel along your journey.

sending you lots of love and hugs x x x

Oh kk please don't bow out. This group helped me hold it together when I felt awful and I would pop on and end up chuckling at the things you and topsy would come out with.

ginger I hope you are ok. We have all had dark moments and they still pop up when I'm not expecting it but don't feel you can't post how you are feeling. As gigs says please don't google.

hnd sounds like you need another pub night after today. Hope the pump continues to do what it is supposed to.

Have left DD off at dancing practice so having a quiet few moments before I collect her again. I think it is safe to say Mary Berry's job is quite safe after my attempts at cake making - hopefully it will taste better than it looks grin

thenightisyoung Mon 01-Apr-13 20:34:39

kk agreed, please don't bow out, I love your posts and all the everyday news (the extent of my lurking is coming out now!)

ginger when I was diagnosed with my second cancer, six months after my first I had acute anxiety and very dark moments. My posts on here were fairly miserable and paranoid and not of the jokey type at all!

AshokanFarewell Mon 01-Apr-13 20:36:44

ginger I'm really sorry you feel that way. Part of the reason is that a lot of us use humour as a way of coping with the scary/tough moments. If you look back you'll see that people have also posted less cheerful things too. I can't speak for everyone but I try not to dwell on the bad stuff too much as I find it can make it worse whereas coming on here and having a giggle really cheers me up. The support I've had from this thread has been amazing, so please do come back and tell us what's worrying you and we will try and help.

KK please don't go! You're lovely and you provide a lot of support here, your posts always make me smile. It's good to have a range of people at different stages of their cancer journey.

HND what a pain the nurse came late, especially when she said she would be early! And sorry you and DS have had a tough day. Were you able to go out after they had been? Hopefully the fact the other nurse was training means there will be more nurses able to do it and you will be seen more quickly next time! Plus it's good the pump is working.

ned I'm a lot better this evening thanks smile your walk sounds lovely and glad your in laws behaved themselves!

topsyturner Mon 01-Apr-13 20:43:41

Ginger we most definitely not happy all the time .
We have all sat on this board and sobbed and cried .
As the others have said , it all depends on what stage you are at .
And never feel that you can't come here and say any of your darker thoughts .
I can gaurentee that we have all thought them .

KK keep your arse on this board !
If you try to bow out I shall stalk you to within an inch of your life .

I come to this board to speak to like minded women .
The cancer support is great too , but I would like you all without that grin

gingeroots Mon 01-Apr-13 20:49:16

OK everyone ,don't over respond .
It's just my view ,everyone is different .

KK - I'm so sorry that my post seemed to be directed at you . It so wasn't .
Your posts in particular have kept me going.

Gigondas Mon 01-Apr-13 21:06:11

Glad you are still around ginger.

Spoke to onc tonight who was reassuring. Am going to get some more painkillers and also go back on steroids. Be afraid... Topsy- we are going back to 'nam.

topsyturner Mon 01-Apr-13 21:14:20

Shit Gigs
Not Roid Rage again ?
<stocks up on snacks incase she tries to eat the mini gigs>

Forgive me if I've got you wrong ginger , but are you trying to pick a fight ?
We are too cheerful or too caring ?
Which is it ?

Copthallresident Mon 01-Apr-13 21:23:47

Ginger I think one problem is that from those darkest moments we have all had, and we wouldn't be here if we hadn't, we have developed coping mechanisms and a black / gallows humour, and an attachment to the boring everyday are two. I certainly could not have coped without them, I remember early on wondering if I could ever be happy again. The weight of a new diagnosis can be overwhelming, and humour the last thing that is appropriate when you might not see your children grow up or face the worst and darkest thoughts about what your future may hold. I am sorry if we have been guilty of insensitivity in that regard. The important thing is we do understand, we have all been there, and you are in those horrible raw first days. Everyone has to find their own way to cope, and humour and a deep attachment to the boring everyday may not be part of it. On the other hand when you feel ready it might.

KK Stick around or we might have to charter a stalker coach to Norfolk

Copthallresident Mon 01-Apr-13 21:26:43

A stalker coach with steroids on board................

Gigondas Mon 01-Apr-13 21:33:40

And cheese - I will need cheese if I am on steroids.

HerNextDoorAt21 Mon 01-Apr-13 21:34:53

Not knowing you very well
ginger I thought you were joking ! I have been in this board for only a short period of time but topsy who
Lives next door has told me many tales of despair from this board, I too have seen some very meaningful
And heartfelt words from the lovely ladies here. I am so guilty of not being around all the time but I
Always know that people are asking for me and looking out for me. I am by nature a jokey person but I am glad that I have a very caring side and maybe helped people through their dark days. I have had a horrendous time on the surgery side of my cancer bit thankfully don't have to have any treatment. The ladies here were there for me every step of the way. Stick around, you'll see what a marvellous clatter of people there are here.

HerNextDoorAt21 Mon 01-Apr-13 21:37:04

...... And don't forget my lovely pump on the stalker coach !!!

NedSchneebly Mon 01-Apr-13 21:39:09

Glad you spoke o onc gig and good that you got reassurance. Why more steroids?


Copthallresident Mon 01-Apr-13 21:40:12

Oh yes, lots of blood stained seroma to slip up on on the floor, as well as wine

HerNextDoorAt21 Mon 01-Apr-13 21:42:19

ash we did manage to go out but the day was a bit of a disaster. DS and 4yo DS wanted yo go in the crèche at ikea but there was a 3 hour wait sad so then we visited BIL and SIL and their cousin who is between them in age only yo find said cousin was out with other family members so my kids were disappointed again. I've hd a tough few days with them and was told today by District nurse that I MUST rest or these wounds will never heal sad oh joy ! Thankfully tomorrow is another day grin

HerNextDoorAt21 Mon 01-Apr-13 21:42:22

ash we did manage to go out but the day was a bit of a disaster. DS and 4yo DS wanted yo go in the crèche at ikea but there was a 3 hour wait sad so then we visited BIL and SIL and their cousin who is between them in age only yo find said cousin was out with other family members so my kids were disappointed again. I've hd a tough few days with them and was told today by District nurse that I MUST rest or these wounds will never heal sad oh joy ! Thankfully tomorrow is another day grin

coorong Mon 01-Apr-13 21:49:58

I'm thinking A stalker coach a la Priscilla movie - with Guy Pearce atop singing opera in his flip,flop dress - any takers? .......

PenPerson Mon 01-Apr-13 21:55:44

Can I get on the coach with my wild mood swings, snake like looking flaky skin and scar like I have had my head chopped off ?

topsyturner Mon 01-Apr-13 22:04:37

Well I'm obviously I complete bitch as Ginger has just pmd me and blocked me at the same time I think ?

Sorry Ladies , I just think this board is too important to have allowed it to be derailed like this .

Like kk I shall take myself off for a while .

Well done Ginger
Masterful work .

gingeroots Mon 01-Apr-13 22:17:37

Calm down TT .
Yes I PM'd you .
Here is what I said

not picking a fight

Mon 01-Apr-13 21:55:24

in answer to your question - too cheerful .
No idea where you got the too caring from .

Blocking you ? Derailing a thread ?

jchocchip Mon 01-Apr-13 22:18:50

Heck everyone! A nice cup of horlicks and a good nights sleep wished to you all. Hopefully things will calm down tomorrow. Sorry I can't come on the stalker coach, I've got to go back to work sad
I value this thread, its a place where people understand. I know I have moved on from active treatment and like the fbs and talk nonsense but that doesn't mean that I don't care about you all.

jchocchip Mon 01-Apr-13 22:21:16

xpost ginger.

topsyturner Mon 01-Apr-13 22:30:03

Last word on the subject .
Please don't muck about on this thread .
Too many women get help they badly need here .
I am not engaging any more .

topsyturner Mon 01-Apr-13 22:30:57

<booking seat on the stalker coach whilst wearing big hat to cover mad hair>

coorong Mon 01-Apr-13 22:41:36

Topsy and KK please don't go - (loads MASSIVE chocolate nabbed from hotel chocolate sale onto the trolley - being pushed by Ewan Mcgregor - -in a kilt and nothing else but a smile)

On a serious note - results in a week, but mindset improved and believe I can al,ost cope with anything - it's the physical stuff that gives me the wobbles

notJenkins Mon 01-Apr-13 22:42:00

Any space for a name changer on the coach ?

HerNextDoorAt21 Mon 01-Apr-13 22:50:53

coorong hope you saw my wee message to you earlier its further down today's posts.

coorong Mon 01-Apr-13 22:56:47

Yes thanks hernextdooor
I'm crashing night sleep well all

topsyturner Mon 01-Apr-13 22:57:26

I've not gone , I am a fickle flouncer !
<thinks Ewen most def would NOT wear underpants>

Eek , what day are your results Coorong ?
Will get the candle burning for you .

NotJenkins LOVE the name change
Can I be NotInLoveWithDamienLewisNoReallyNotMe ?????

HND you still sober ?
Remember , one day at a time ...

wtf is happening ?? I have come back to find discontent and horridness - I will quit too if there's no kk or topsy. I don't quite understand what the problem is- we talk about everything on here, from grimness to complete flippancy yet we are all united in one thing -and we can deal with the depths of despair with great sensitivity. I would be seriously lost without my friends on this thread -many of whom have been here for coming up to 4 years so please let's calm down and not get all prickly.

Copthallresident Mon 01-Apr-13 23:14:46

Well said MAS

Damien is sitting next to me on the coach, just saying.

topsyturner Mon 01-Apr-13 23:20:57

Sorry Mas
<hangs head in shame>


HerNextDoorAt21 Mon 01-Apr-13 23:22:56

topsy I may have opened a bottle after the day I've had but there's still some left !!!! I finished my Indian snacks got brunch today .... Twas lovely !

KurriKurri Mon 01-Apr-13 23:30:05

Do not get flustered because of me, - I am just going to have a little break, but will be back (generally I think I am feeling rather vulnerable and over sensitive atm. probably due to sick doggy).

Loads of love to all, and good vibes to everyone waiting for results and having appointments.

If there's anything I can help anyone with regarding treatments and ops. Do PM me if I'm not on the thread, and I'll try my best to help smile xx

AshokanFarewell Mon 01-Apr-13 23:34:06

Oh dear, things have got a bit weird. It would be a shame for anyone to leave! It is such a wonderful place for support and it's the silliness on this thread that lightens my mood and helps me to feel almost normal.

Ladies who posted on my Facebook wall with your nicknames, I've hidden your posts as I did an experiment and googling all three nicknames, even shortened, brings up one of the old threads so have hidden them so we are not all identified by nosey parkers!

HND today sounds like a total nightmare, you must be exhausted, so hopefully you've had a more relaxing evening and tomorrow will be a better day grin

coorong fingers crossed for your results smile

Am very sleepy and there have been so many posts I can't keep up but I'm sending positive thoughts to everyone, hope you all get a good night's sleep and will catch up in the morning! smile

thegreylady Mon 01-Apr-13 23:34:26

Whatever happens no one must go. MAS, KK, Topsy and Gigs etc you are the thread. I don't come here so often now but when I do it is usually when I or someone else needs support. If someone needs to be relentlessly serious then maybe bcc is the right place. This thread is for real women who have or have had a filthy disease yet still manage to chat and joke sometimes and have clawed back a semblance of normality for themselves and their families.
They have been here for one another through the devastation of a Mets diagnosis and the sheer terror of the first confrontation with a cancer dx. They hold hands with strangers who have become sisters, friends far beyond just a thread on a forum.
Tamoxifen 34! That stands for something really special in terms of love and support. Please keep the jollity and don't leave or change anything. Time enough for sadness and solemnity when it is needed.

AshokanFarewell Mon 01-Apr-13 23:35:49

KK sending extra positive thoughts to you and lady dog tonight, and please don't stay away long!

Thanks for that * greylady* x
Lots of good thoughts to dear KK and old day dog.

Copthallresident Tue 02-Apr-13 00:02:09

Lots of good thoughts to KK also, as well as Old Lady Dog, goondog sending his special old lady dog reinvigorating lurve too. Hopefully you will both have a good nights sleep.

Gigondas Tue 02-Apr-13 07:51:14

gigs playing her one man band I think it's time we had a bit of a sing song on the coach [copth and topsy put Damian down] and have some brew from the flask.

Agree with grey and mas that too much love and support on here to let things die so let's start afresh today.

Sorry you had shit day hnd - hope you can rest up a bit (nurse is right as that's what settled my wound but easier said then done with kids).

Going to ring dr shortly- let's see if can get thru ! So can get more painkillers- steroids are to calm nerve inflammation.

Who else has appt this week? Coorong? Ash- when is your next visit to dr w? Pen are you appt free this week?

Gigondas Tue 02-Apr-13 07:52:02

And kurri I am sorry about old lady dog- I know how precious she is so it must be horrid for you .

thegreylady Tue 02-Apr-13 08:08:55

Kurri just checking to see how lady dog is doing this morning. Thinking of you all x

HerNextDoorAt21 Tue 02-Apr-13 08:14:15

Perfectly said greylady

Hope you get through to the doc gigs and you get some relief.

kk hope you lovely dog is ok and that you don't stay away, your posts are lovely

Well a better start to the day, DH is here, the sun is out and I haven't tripped over my drain tube yet !!!! I say good morning to topsy but the lazy moo,will,still be sleeping I'm sure !!!!

topsyturner Tue 02-Apr-13 08:24:56

I'm up !
(Reluctantly , but I'm up !)

<sneaks Saurons treats to Old Lady Dog>

Thanks for the music Gigs , much appreciated x

Hope everyone is doing ok this morning .
Any news on surgery dates yet Gigs ?

It's another Bank Holiday today over here . They have the Monday and Tuesday , aswell as quite often the Friday too !
We are off into town shortly (hence the early rise) as DD wants to spend some more of her birthday money .

What ever you are all up to today , hope its a good one .

<waves to Grey , it's lovely to see you>

gingeroots Tue 02-Apr-13 08:50:36

I just want to say that I am a real woman and I do have a filthy disease .

I'm sorry I've upset people and I think greylady is right and that I need to find a different forum .

We're all different aren't we ? Some styles suit some people better than others .

I'm sorry that in saying what I did I've ,unintentionally ,criticised your thread .
It was stupid ,badly worded ,immature ,I should have kept my thoughts to myself . Hopefully it's a lesson I'll learn for the future as I go through all the nasty stuff that lies ahead of me .

But I promise I wasn't trying to "mess about " .

topsyturner Tue 02-Apr-13 08:54:25

Ginger you are very welcome to stay here .
It's a fabulous resource for info , we all get told the docs opinions on treatments . But sometimes people who have been there can tell you the stuff that the docs don't tell you !

Anyhow , it's your choice .
No hard feelings from me anyway x

HerNextDoorAt21 Tue 02-Apr-13 09:46:43

ginger I also think that you should stick around to see the full range of conversations that go on here. I agree that the info you get from real people who have been through the cancer experience is very valuable. by all means go and seek out other forums and see what you can find .... I have personally not found anything else I liked.

jchocchip Tue 02-Apr-13 09:50:51

Was just popping on to send good vibes to ginger for her appointment today. Have you managed to sort out care for your Mum?

Some on this thread are under a lot of stress and I don't know why it kicked off yesterday, but we can have a new start today.

Much love to you all, envy to those with an extra holiday. If I don't go now I am going to be really late sad Making the most of the smile while we have them grin

AshokanFarewell Tue 02-Apr-13 10:15:17

ginger I hope you don't think anyone was implying you weren't a real woman or you didn't have a horrible illness! It is just that this is a thread where we can be ourselves as well as just cancer. Like I mentioned a while back, at times I've felt like I'm just a walking bowel, like the illness has become who I am. But here we are a group of people who chat and joke and support each other and just happen to have or have had cancer. We can be very serious when we need to be though.

If you tell us something serious then we won't make a joke of it, unless you wanted to, if that's what you are worrietd about. We make jokes of our own situations mostly, and join in jokes about each other. But no one would come on the thread and make a joke about someone else's situation if they didn't know the other person was okay with it, I hope that makes sense I'm not exactly sure how to word it!

Anyway, please don't feel you have to leave, this is a wonderful source of support, even if no one has been through exactly the same, someone will have been through something similar and we will all try and understand and support you smile

Good morning topsy enjoy your trip to town, I hope DD finds something she likes.

HND enjoy the sunshine and I hope you get a bt more rest today! smile

gigs hope you've managed to get through to the doctor and get your meds sorted. I'm not sure when my next appt with Dr W is, I'm having problems rescheduling. It's meant to be tomorrow but I'm now having a little procedure, just day surgery, on my pouch, which will make life sooooo much easier hopefully. No one will give me a new appointment though or explain how I will know whether I'm having the infusion or not if they won't let me see him! hmm

jane have a fabulous day, I hope you aren't late, definitely with you on the bunnies, shall miss them when they're gone! grin

KK I hope you and old lady dog had a good night

Good morning to anyone I've missed or cross posted with. I hope you all have a lovely day. We have clear blue skies and glorious sunshine here so I'm feeling full of the joys of spring, absolutely freezing though! grin

Am popping in to say hi. Waving to all people who have joined since I have been AWOL, which is a while......sorry. Nice to see my dear friends are still doing a brilliant job of supporting each other through........ All fighters and survivors the lot of you!
Do we still have a fbs trolley on which I can leave hot cross buns, chocolate cake etc.....?

Copthallresident Tue 02-Apr-13 11:36:54

Glad you stuck around ginger We are all real women and we all have or have had (not that you are ever allowed to say you are cured) this filthy disease, some of us more than once, so we have all had very dark days and would certainly not make a joke of those feelings. You are absolutely right we are all different. I dealt with the darkest days alone, it was only by walking mile upon mile that I found a way to make the dark thoughts recede, come to terms with the fact that my life was going to be different, but I would still be able to laugh as well as cry (oh and by being really nasty to my parents blush).

Since then I have been put in touch with a lot of women in the same situation and they have coped in many different ways, I have known women who never stopped feeling angry and wondering "why me", and women who became deeply depressed and people who have been in complete denial. All perfectly normal ways to respond. Perhaps one of those other forums will help.

Personally I and the group of women I went through treatment with felt it was really important to laugh as well as cry, humour can put cancer back into it's box (it is after all just a few offensive mutant cells, not the "big C" that society has built it into in our minds), helps you reassert your own personality when doctors nurses and even friends are trying to make the Cancer define you and when what you are going through is so extraordinary it helps to take the piss out of it's most ludicrous aspects and some of the characters you deal with along the way. It was refreshing to come across a thread with women who responded the same way, and I am sure you can understand why they would defend their own way of coping.

What you are going through IS deeply traumatic and another legacy of experience of it is that I am now studying how trauma is expressed in literature. Noone can assimilate the horror of a traumatic experience straight away so our brains let us take it out in small chunks to deal with it . One of the wisest women writers who underpins my work was writing during the war and when she and her friends were in a city that fell to the Japanese, surrounded by scenes of the utmost brutality especially towards women she said she and her friends turned to thinking about clothes, that when life is so extraordinary you cling to whatever shred of normality you have left. So if we are fluffy, it is because normal is important sometimes.

Sorry to go on, but hope it helps .

I have to hurry away as Nazi Polish builder just arrived to shore up our house for a little while longer, so now have to focus on light fittings and pipes and things.

But thinking of and sending good thoughts to all with appointments and needing new fittings and pipes, and hoping KK and old lady dog had a good night.

topsyturner Tue 02-Apr-13 11:46:25

On way home now .
DD went mental in paperchase .
She loves their journals .

I think I need to go see my GP though , as once again my bladder failed me hmm
What treatments would a GP suggest for a woman who pisses herself in public ?
apart from locking up ?

amberlight Tue 02-Apr-13 11:59:45

Blimeys, that was a bit lively, ladies! shock
No-one is going anywhere.
It's ok to be cheery, sad, scared, or anything else about the cancer and the way it takes us. Everyone has their own way of coping.
And the great thing is that people here can switch fast and expertly between joke and caring and back again.

Topsy, not sure. Docs have cunning plans for those things involving exercises and medications etc I think. <pretends this has never happened to her>

brew ?

Gigondas Tue 02-Apr-13 12:51:02

I have some in continence pants left over from when my seroma burst topsy.

Agree with amber- it is a very common issue and think there are specialist physios that deal with it.

AshokanFarewell Tue 02-Apr-13 12:56:56

topsy I don't have bladder problems, but my pelvic floor is incredibly weak from my surgery and I have a pelvic toner. It's available on prescription here but I bought mine online because my GP was very slow and I really wanted to get to work. Is yours likely to be a pelvic floor thing do you think? If so, I highly recommend it. I haven't had it long and I'm still on the lowest setting but it definitely feels like a little workout while I'm using it! If you've had any surgery or ongoing problems down there then probably best to ask your GP about it before using, I had to wait a while after my surgery before I was allowed to use it. Anyway that was all a bit rambly but just to say there are things out there to help and that do work smile

I'm seeing the physiotherapist in a couple of weeks to discuss my pelvic floor as well, yippee grin

Gigondas Tue 02-Apr-13 13:06:59

Physio is going to have to rebuild me - does anyone elSe get seriously achy and slow when have been laid up in bed awhile.

Big gig is trying to build a domino run- it is not going well and it is making her quite cross . Particularly when Mini gig helps grin.

Also can I balance out all my moans about my old nanny- new nannies are wondrous, even making me lunch, which has made it nice and easy to flop out.

Copthallresident Tue 02-Apr-13 13:14:56

Topsy It is incredibly common, it's just people don't tend to let on. Just don't make me laugh, or cough. When I was in hospital in the early stages of being pregnant with Little Copt I was put on the gynae ward in what must have been tighten up the bladders week, about ten having them sewn back into place. And they weren't all old by any means, there were a couple of young athletes whose careers were being compromised, one runs our local Netball Club. I am sure it is all that athletic jumping that is at the root of my problem. However they were having the surgery because the exercises hadn't worked and it did motivate me to keep up the exercises goes off to google pelvic floor exercises. I seem to remember one was controlling the flow of wee, stopping it and letting it go again and the other is the one where you clench your <acts like Les Dawson old woman mouthing word>

topsyturner Tue 02-Apr-13 13:20:37

I've been doing my own pelvic floor exercises <hoikes bosom> but it doesn't seem to be making a difference . Infact it's getting worse !
But how do you know if its pelvic floor or not ?
And if its not pelvic floor related , then what might it be ?

Copthallresident Tue 02-Apr-13 13:24:57

gigs Yes lying in bed does definitely accentuate all your aches, that is the problem with my sleeplessness, do I stay in bed until I have managed six plus hours, in which case I spend about 12 in bed, or do I just make do with the sleep I get in 8 hours and then be too tired to do anything anyway, either way my hips cease up. Currently motivating myself to do physio exercises and stretches alongside nagging Little Copt and being manipulated by Big Copt into making her lunch. How can two sisters be so different, I worry one works too hard and how the hell I motivate the other without being a fishwive

Loved the picture of little gig at the zoo. Just don't take her to the empty seal enclosure, big Copt spent her entire third year worrying where the seal had gone and was it alright, and still tears up when she thinks about it sad She had her last birthday party at the silent disco at the zoo but we caught her googling the seal at London Zoo beforehand just to see......

HerNextDoorAt21 Tue 02-Apr-13 13:25:00

topsy your bladder has been playing up recently and yes I should see your GP .... Just make sure is it not one of DS' friends dads !!!!

We have come to the seaside for a ' 'family' day .... We are at an indoor play centre. DS (9) is very happy and DS(4) is coughing constantly and DH has gone for a browse round the charity shops ..... Some bloody family day .... Me sat alone with the background noise like a thousand shrieking cats !!!!

I am feeling a bit low about my home life to be honest. I have a great DH who has pampered me and really taken care of me when i was really struggling physicslly. I now think that he thinks that because I look and feel good and like to socialise with friends for coffee and lunch (which is resting in my book) that I am game to re take over the whole she-bang of things I used to do ..... I just feel like he is biting his tongue and wants to let rip and tell me I am a lazy cow. I have asked him if there is anything wrong and told him the things I still struggle with and that the nurses think I should rest more and he just does one of those "yeeeeeessss" things whilst looking elsewhere. Anyone else had this and what did you do ?

HerNextDoorAt21 Tue 02-Apr-13 13:31:32

gigs I am incredibly achy and move around like my dearly departed arthritic mum at the moment .... Ask topsy about the old lady noises when getting off her sofa ! I have also suffered what I think is a permanent nerve damage on my outer thigh since lying in hospital for a 15 day stretch.

amberlight Tue 02-Apr-13 13:54:42

Topsy, 'overactive bladder', I guess. Sometimes the nerves get sulky. Or it could be a minor infection.

HND, grr re superhubby turning into sulkyhubby. You need that rest. Is the BCN able to have a quiet word with him and stress why you need support, still?

Seriously achey - yup. I was struggling to get out of chairs when on Herceptin. And now have worse problems with stiffness if I don't get up and move about every few mins.

Copthallresident Tue 02-Apr-13 14:12:44

Yup hnd I can definitely relate to hubby wanting everything to go back to what it was before. He was fantastic when I was ill but now thinks that because he goes to work (and he does work long hours) I have to do everything else regardless of sleep deprivation, lymphedema prevention guidelines, creakiness. It does really annoy me but I think it was just the way he was brought up, default mode as it were, just haven't yet worked out what to click on to get it back into caring mode, Sorry. Not much help.....

Gigondas Tue 02-Apr-13 14:33:16

Hnd- dh is good in terms of not Moaning but i can see it taking a toll on him stress wise (the holiday he went on last summer without me but with all dc/dsc being a case in point). I feel guilty as he wasn't meant to be my carer and at times like this we don't feel much dh/dw. Which is shame as had bunch of normal stuff like holiday planned sad.
And I think people massively underestimate how long it takes to recover and that you aren't the same again (nodding at your description Copt as i get very stiff hip and knee from lieing or sitting too long).

gigs I'm like a 90 year old at times. I blame the chemo as I definitely wasn't as bad before it or maybe it is because we tend to sit more (well I know I certainly do).

topsy best to get it checked out. If it is irritable bladder I think that can be sorted with medication. There is a helpline number you can phone for advice but I think it would need to be dx first.

hnd Hope your ears hold up to the noise. You really do need to be resting though if you want your wound to heal. Amber made a good point, maybe if he is around when district nurse is dressing your wound she could stress how important it is for you to take it easy.

I have a severe case of CBA (can't be a**ed) at the moment. Even making the kids lunch is a chore and I am feeding myself full of sugar which isn't good. Swift kick up backside required.

Gigondas Tue 02-Apr-13 15:19:11

Chemo does stiffen muscles - remember when I couldn't walk post George Michael Concert?

I know what you mean about CBa... I haven't left house in days. Got more painkillers on way tho which should help.

I will post nam photo on fb for topsy when I steroid up grin

Copthallresident Tue 02-Apr-13 15:19:33

hnd gigs Yes this illness is hard on DHs, in our support group several were on anti depressants. Whilst I was ill my DH went off for a break with his best friend (who I won't normally have in the house, patronising sod ) which did him a world of good not least because his bf annoyed the hell out of him and it made him appreciate me, bald, one titted, vomiting, and weak waste of space though I was! You can't help but feel a bit guilty but just remember they are lucky to have us, whatever our baggage.

Gigondas Tue 02-Apr-13 15:19:44

Oh and mas have you read Tracey thorns book-it's awesome!

HerNextDoorAt21 Tue 02-Apr-13 16:12:30

I do feel bad moaning as he is very good and has always done a lot around the house ..... Ironing though (and hoovering) is a big no no for me but because the leaflet said abstain fir 12 weeks, he seems to imply I can do it now by making a big drama
Of getting out the ironing board and sighing .... He never says anything ...... I am way behind the 12 weeks as healing is proving tiresome ..... I ramble ..... Somebody slap me !

oh grr about dh hnd - as others have said, it takes time to recover fully -but as you are looking healthy and bright (from seeing your pics) and lunching with friends etc-he must think all is back to normal- can't win really smile
ginger agree with what ashokan said earlier - do stick around if you can- I don't like the other forums I've visited,I must say.
Goig - have read the first bits of the Tracey Thorn book- was waiting until dh had read it- it was R4's book of the week a while ago and really liked wht I heard.
topsy am sorry you're having wee probs - sounds horrid. No practical advice I'm afraid.
Bracing walk done, am knackered - going out to shops in a sec and might need a takeaway coffee. This pesky period is now on week 3 -will it ever end ?

AshokanFarewell Tue 02-Apr-13 17:02:50

HND sorry you're feeling down, have you tried asking him to do specific things to help rather than just generally saying you need him to help? Certainly my ex wasn't very good at knowing what needed doing but if I asked him to something specific he would do it. I definitely recognise the huffy, melodramatic technique, he used that for washing up! In the end what killed our relationship was that I didn't feel feminine or attractive, and felt more like a patient than his girlfriend, but I did still need the help too and I didn't spring back into sexy girlfriend fast enough! It must be hard to go from partner to carer, even temporarily, but it's equally as hard to go from partner to patient! smile hmph, stupid cancer. I hope DH starts helping out more so you are able to get the rest you need. Also agree perhaps get your nurse to speak to him? smile and don't feel bad for moaning!

I'm just packing my bag for my little outing tomorrow. I'm taking overnight stuff just in case they decide to keep me in. I spoke to the GP earlier who thinks I have a fungal infection which is why I'm in so much pain, so I've got a prescription and hopefully that will clear up, and not affect the procedure tomorrow! smile

gracie and gigs another CBA sufferer here, went out for the first time since Friday earlier, just for a quick shopping trip, and then had to get back in bed for a rest! smile

I have a friend coming over later which will be nice smile I'm hoping the pouch will be on its best behaviour so I don't have to spend the whole evening in the loo.

Did anyone watch Jonathan Creek last night? I'm a massive fan and I have the whole box set so was thrilled it was on, but didn't think it was quite as good as the others.

jchocchip Tue 02-Apr-13 17:17:00

Hi everyone! Busy on here today. I've escaped from work and found some cream eggs in wilkinsons and malteeser Bunnies 5 for a £1 in no 10 so I'm happy! Eek about pelvic floors and 3 week periods. My pelvic floor isn't what it was blush <clench> massive bag of mini scream eggs for the trolley...

NedSchneebly Tue 02-Apr-13 17:33:37

Bollocks bollocks bollocks. Missed Jonathan Creek - will have to catch on iplayer.

Got another period yesterday, so phoned BCN. She said not to worry, am can't get an appointment to see my oncologist before my appointment on 9th May anyway. Hard not to stress that Tamoxifen not doing its job properly. . .

Been for a lovely walk with DH and DS and dogs this afternoon. Breezy but blew a few cobwebs away. Had a productive morning in school setting stuff up for next term - we are doing minibeasts, so lots of science-y stuff and investigations. Taking them to the common to do a minibeast hunt and write their own version of The Very Hungry Caterpillar. Quite looking forward to it.

HND My DH was the same. Thought that because I was not at work I could clean the house and dash around doing jobs. Just stand your ground and do what you can, but don't let him guilttrip you into doing more than you can manage.

Ashokan good call on hiding FB posts!Hope you are OK today. Did I miss what you've got scheduled for tomorrow? Sorry lovely. Can you remind me? Hope the pouch behaves tonight for evening with your friend.

Must take potato waffle out of oven for DS. LAters lovelies x x x x

coorong Tue 02-Apr-13 18:51:05

Feeling very drained - yippee!

But disappointed I was fussing about a grand total of 95ml - apparently it's not much in the scheme of things ....... I gues it's all relative. All the results will be back next Tuesday, but somehow I feel ready for anything. The surgery has been so life altering that further treatment will seem lime just another step, rather than an enormous leap.

However, I have lost fluid today and so dangerously dehydrated - taking steps to avoid serious consequences - via Dr Peroni! (Beer emoticon)

thegreylady Tue 02-Apr-13 18:52:10

ginger dear do sticK around- we are all in the same boat and we will help you through if we can.
I had my dx in 2006 but had a biggish triple negative tumour, a wle, chemo [4xfec and 4xtaxotere] and rads.
I really thought I would die-especially with the horrid side effects of chemo.
This is a place where you can be who you need to be at any given time and you will find yourself accepted,supported and helped if you need it.
The only gentle criticism I would make is to ask you to accept others as they are too even if sometimes the mood of the thread seems inappropriate I promise you it isn't.We will always be here for you if you need us.
The other forums you might like as well as [not instead of] this one are the Breast Cancer Care site and bcpals.
Good Luck

It may not have been as good as the earlier series, but I enjoyed Jonathon Creek, well worth a watch!

Have done the bladder/pelvic floor training. It might have improved a bit as a result. Well can confirm that the speculum didn't fall out today during my smear test, nor did they have to crank out a bigger some like last time! blush

No one answered about the fbs seriously worried you guys left it behind in a previous thread! Shocking shocking shock

sandripples Tue 02-Apr-13 20:07:50

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 Tue 02-Apr-13 20:57:04

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

HerNextDoorAt21 Tue 02-Apr-13 21:17:01

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 mŷ 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 !

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.

notJenkins Tue 02-Apr-13 21:33:25

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 Tue 02-Apr-13 21:57:25

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

amberlight Tue 02-Apr-13 22:09:45

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 Tue 02-Apr-13 22:17:07

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

AshokanFarewell Tue 02-Apr-13 22:36:20

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 smile 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 smile)

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! grin

coorong that's an awful lot when it's inside you! I'm glad it's out now and hopefully you're feeling better smile 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 hmm I doubt that will ever happen again... grin 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 smile 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 blush 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 smile

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 Tue 02-Apr-13 22:53:52

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

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 envy
ned try not to worry about the tamoxifen.Hope you can see Onc quickly for reassurance.

Gigondas Wed 03-Apr-13 06:41:00


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 awine or brew 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 Wed 03-Apr-13 08:44:46

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 hmm.

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 Wed 03-Apr-13 08:47:51

gig pleased you had a better night, brew gratefully accepted

notJenkins Wed 03-Apr-13 09:02:49

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 Wed 03-Apr-13 09:59:31

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.

brew 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 Wed 03-Apr-13 11:00:11

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 grin

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. sad

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 Wed 03-Apr-13 16:00:31

...and having killed the thread... blush

Gigondas Wed 03-Apr-13 16:13:32

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 Wed 03-Apr-13 17:28:10

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 Wed 03-Apr-13 18:16:31

Stalker coach now hippy bus smile

Glad you have date now GIGS group hippy hug

Amber It was my wittering on that sent everyone running

AshokanFarewell Wed 03-Apr-13 18:27:30

I'm home! Well, I got out about 12.30 but then I got home and fell asleep. Four hours of uninterrupted sleep, mmmm smile 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 smile

gigs I'm glad you're more comfortable, even if a little out of it grin 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 smile 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! blush

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 Wed 03-Apr-13 18:28:44

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 album--I 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.--

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 Wed 03-Apr-13 19:09:13

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 smile

Gigondas Wed 03-Apr-13 19:09:36

It is gracie- so havjng that done is good.

Ash- cross posted but glad all done. Be as gross as you like- I had my fanjo nuked when I had radio so could probably swop bowel effect stories wink

Gracie - ballet mothers are terrifying. I did some of that as a kid and shudder at the memory.

jchocchip Wed 03-Apr-13 19:09:49

wine sad

HerNextDoorAt21 Wed 03-Apr-13 19:29:23

Much better day today thanks everyone took both DS s and DH to to a place called W5 (google w5online) and we had lunch there too. Then had coffee with topsy and took her shopping with her DD. now home cooking dinner ..... Have had a peaceful and relatively restful day grin

gigs i am glad you now have a date and can have a plan

amberlight Wed 03-Apr-13 19:29:59

(I run a business and work as an autism trainer as well, so I meet new people all the time...but not in social groups. Tasks, great. Social interaction in groups, I'm rubbish, even if I like it. I do love meeting people from online (met most of my fb friends now for example). But I've also had one or two really scary experiences; one internet board set up a meeting of people - I went along - and after half an hour the group deliberately 'lost' me and disappeared on a bus to another part of town. I was v sad. But blessed with many good friends in life who don't think that's a good way to treat autie friends.)

(hands out more wine and stocks up the fb trolley) )

amber you are definitely better off without friends like that. Abandoning you is nasty and wrong.

Glad you had a good day hnd. My kids love W5 although boys are getting a bit too old for it now.

That will be good to get the first stage over gigs. FIL has had a couple of angioplasts for blockages in his legs. I know it isn't the same as your neck but he recovered very quickly.

I will join you jchoc in admitting to eating lots of chocolate. I may have nibbled a few pieces half from the kids' Easter eggs.

Gigondas Wed 03-Apr-13 19:54:44

That's good to hear gracie about fil as it is same procedure - just on my neck. I would have nicked some egg if big gig and dh had left much.

Dh says I am talking a lot and being manic blushgrin.

That is a wretched way to treat anyone amber -angry for you.

But more excited about your holiday plans- where are you off to?

Gigondas Wed 03-Apr-13 19:55:38

Waves at hnd- glad you had a better day after yesterday. Meant to say agree with others that dh being off.

AshokanFarewell Wed 03-Apr-13 20:00:53

shock amber I cannot believe how horrible those people were! sad I'm glad you have lots of good friends as well. Those others have really missed out as you seem lovely! smile

HND I'm glad today was more relaxing

gracie well done to DD for remembering her moves

All those happy to discuss bowels, I'm in a bit of pain but woohoo op seems to have been successful! Almost like a normal person grin

I have some chocolate Angel Delight for the trolley if anyone wants some grin

notJenkins Wed 03-Apr-13 20:04:20

Glad to hear your op date is set and not long to wait gigs. Will you be in for long after ?

Can I make it a hippy convoy with my VW camper ?

Discuss bowels as much as you like. A large part of my job is spent in people's bathrooms discussing that very thing and the finer points of arse or fanjo wiping so I am completely unshockable. My gran had a pouch for years too and liked to discuss it at length which was quite entertaining when she did it loudly in busy restaurants. She had no shame and as she was such a sweet old lady no one would ever dare ask her to change the subject !
I have just come back from the beach and it was so cold it was like the arctic. The beach was completely empty and windswept. Very bracing.

Gigondas Wed 03-Apr-13 20:08:48

Only one night for this op- might be in for some time for main ops. I have treated myself to some new lounging about kit and may get the onesie out ;)

Beach photo looked lovely.

envy About chocolate angel delight.

Now back to this house programme that dh wants to watch - very odd what some people think will sell.

sandripples Wed 03-Apr-13 20:22:51

Greylady - I can't remember how to do a PM right now! Anyway, if you do find we're going to be at Hay on the same dates do PM me as I don't follow the thread every day so am likely to miss it if you put it on thread! Thanks.

Oh love your dogs notj.

greylady how are your tummy pains? Are you feeling any better?

Angel Delight - yum.

notJenkins Wed 03-Apr-13 20:38:29

Ah thanks gracie my FB has loads more dog pictures than children pictures blush
Now I am feeling more normal the dogs don't know what has hit them as walking them is a novelty again. The hooligan puppy is still partial to assaulting random people by jumping all over them so it can be rather hairy at times.

BasketzatDawn Wed 03-Apr-13 20:39:12

Still reading from the sidelines, everyone. Wanted to say a few things - and will probably miss my main points as usual, as brain doing badly on steroids. Gig, you are in good company in terms of steroid effect as my DH (and ds4 agreed) complained today i was talking far too loudly (i know he was right - i could hear myself but couldn't stop itblush).

Obviously i can't be let out in polite company, moods are swinging like blazes, and I feel mostly pretty crap. Dose going down slowly, but still on a fairly large amount. I hope the angioplasty - and of course the later 'main event'- go really well, gig, and I am so sorry you are going through this again.

I am off for a bath shortly and will try to read - struggling to focus on anything much at mo (have just cast on a/nother pair of gloves - you can never have too many pairs of gloves, esp
unfinished ones .....). The sun has shone on Scotland today, almost springlike. My brother,whose birthday it is, ws complaining of the cold. 'baltic with sun'. I told him weather is relative for us Scottish people.

I wanted to say I love Amber's very intelligent insightsto life with autism. As mother (and probably wife)of various people on spectrum, it helps me enormpously to understand what is going on, and of course support my lovely people.

I send best wishes too to Norfolk and Lillte Old Lady dog and her mistress.

Lastly, love and best wishes to all of you. i am reading, just not saying much these days - well, I am in RL(too much to say there. allegedly). I have my evening headache now. And I think keyboard is playing silly buggers. Tis hard ot tell the difference between 'steroid brain', fat finger syndrome, and keyboard playing silly buggers. IMO and great E of all three.

Gigondas Wed 03-Apr-13 20:41:02

Basketz so lovely to hear from you{{{ }}}

Glad I am not the only chatterbox wink

BasketzatDawn Wed 03-Apr-13 20:50:31

On onesies, ds3's gf gave him a onesie as a Valentine's present. Twas very funny to see a 6'3 ish beanpole in a onesie. Legs stopped halfway up his calves. He reckons he will wear it in freshers week (I think it'sa dare). He is going to Glasgow to do Microbiology - his first choice. Thank heavens somebody in family is doing okay.

I am glad you have got through it so well hoping you get a good nights sleep tonight.

Copthallresident Thu 04-Apr-13 01:30:07

Quickly popping in as early start tomorrow, wine should keep hormones calm for a decent nights sleep, beatific smile

Amber There is no end to the ignorance of people, some just don't have the imagination to understand difference. Thank goodness we are not all the same. I promise I'll make sure the hippy bus waits for you to board. I can't believe any of us wouldn't do the same.

nj oh yes VW campervans welcome!! And your dogs are gorgeous.

Ash Also happy to discuss bowels and poo, glad your pouch back in working order.

gigs <tries to get word in edgeways> . I spent a lot of time in SF in the 80s. I could have gone to live there but the hippys had all gone, not one in Golden Gate Park or Haight Ashbury and though stunningly beautiful I found it a bit souless and parochial, decadent even, even the gay community were keeping a low profile then. I thought it was me but then given I have practically turned Chinese and would give anything to go back and live in China I don't think it was hmm Or maybe it was finding that the roach infestation in the serviced flat was eminating from the alarm clock radio next to the bed, turned my head one night to see a roach disco going on across the clock face shock

Gracie I can imagine scary ballet mums are a breed apart .

Night all

Gigondas Thu 04-Apr-13 04:41:50

Ugh at cockroaches - see you are also doing odd hours copthall. Am up with the steroid insomnia but did sleep better and pain ok so am happy.

grin At your ds onesie baskets. Mine is huge rather than too small but so snug .

AshokanFarewell Thu 04-Apr-13 08:19:06

Good morning everyone.

I feel like crying sad turns out the op didn't make any real difference, it must just have been the constipating effects of the ondansetron they gave me with the GA sad my skin is completely raw, I have what is basically extreme nappy rash blush because stuff comes out far more acidic and also still has enzymes in it, and my poor bottom just cannot cope sad I was up a few times in the night and it took everything I had not to scream. It feels like I've eaten a whole punnet of chillies and I'm trying to pass a shard of broken glass! I've got creams and wipes and all sorts and I'm on maximum doses of two bowel slowing drugs but none of it seems to be helping.

Plus no one will give me an answer as to whether I'm having an infusion next week or not, twice I've tried to get a message to my oncologist and twice I've had a reply that yes it's fine to take my tablets, pick them up next week. Which is not the question I was asking angry I don't know whether to assume that means no infusion, but I'm booked in at chemo suite apparently. If I went and had the infusion without confirmation from him he would be furious though. Is all such a nightmare. He is going on holiday so I won't be able to see him before the day I'm booked in for infusion, my cancer nurse is also on holiday and wasn't much help when she was around. Argh. All such a nightmare. angrysad

I hope everyone has had a restful night, sorry to come on here with so much to moan about sad

amberlight Thu 04-Apr-13 09:08:18

Ashok, arrgh and ow. Aloe Vera gel?

thegreylady Thu 04-Apr-13 09:08:59

Oh Ash that sounds absolutely horrible. I had the acid diarrhoea and burnt bum when I was on chemo. It is horrible. I would think your infusion would go ahead but ring the chemo suite before you set off. I can't find your back story so don't know if you are in the UK so I won't say more for now. Sorry you are so miserable: (

notJenkins Thu 04-Apr-13 09:39:41

Oh ash that sounds really horrible. Have you got sudocream ? We use that for nasty rashes / as a barrier cream and it seems to work for us.

I can't suggest anything sadly but sympathise with you. We are here if you need to rant.

I have some organic white crusty bread so can offer very high carb toast this morning.

am trying to catch up after a day away - forgive me for not acknowledging everything...
waving happily to see basketz and glad you have a date gig
ashokan bugger- am so sorry you are still suffering despite op sad -a gentle hug for you.
amber we would all 'get' you if we met as I feel we know you pretty well from here,besides we love you anyway grin

Please send loving thoughts to my friend who gets her results tomorrow and to my new friend from secondary group who has ascites (had to look that up)-basically fluid in abdomen from poss. liver mets- arghh)
Had a lovely day yesterday in London with dh and T - South Bank then Portrait Gallery (saw photographic portraits of Damien Lewis and the very lovely David Morrissey among others) Showed T Soho and all it's glories as he hadn't been there before -and it was where I spent much time rambling about as a foundation student at St Martin's which was then on Charing X Road - also nostalgic as my mum was a student there. In her honour we had coffee and cake at Maison Bertaux where she used to go (bloody expensive for 3 coffees and an eclair and almond macaroon -though they were delicious) Wandered about- amazingly bumped into my brother (how small the world is) up from Bath to work on a sports event in Victoria park.
Went to Liberty and marvelled at a Persian rug costing over £3k then wandered back towards Covent Garden and the London Graphic Centre to buy some ink,pens and a new pencil followed by early supper at Wahaca -yum. Walked back to Waterloo and home- totally knackered.

thenightisyoung Thu 04-Apr-13 10:07:41

Ash, everything sounds just horrible for you right now. I hope that maybe things might settle a little bit because GAs can really mess up the system. I am really angry at the way you are being treated as far as getting info about your chemo is concerned. When you get the strength up call again and again if necessary. Everyone has their favourite bum cream - mine is bepanthan ( that may not be entirely correct spelling )
Gig, good that you have a date and something to aim for. A onesie sounds very comfy and comforting smile
kurri, i hope you and your lovely old lady dog are ok

thenightisyoung Thu 04-Apr-13 10:13:15

Mas, x posted. I hope your friends get good results. Your day in London sounds fab. I'm off to see the Bowie exhibition at the v&a with my lovely dd. I'm really excited grin

amberlight Thu 04-Apr-13 10:41:35 Apologies for linking to a Daily Wail article, but not sure if this is any use either, Ash?

Gigondas Thu 04-Apr-13 10:43:29

Just woken up- body clock completely weird thanks to steroids but pain better.

Ash- that sounds horrid. I know I bang on about it but aloe gel helped me (I had radio on my bum then chemo so also had ring of fire experiences). KRep on at unit - did you ever make a complaint ? There should be an alternative number for your nurse too.

Mas - your day out sounds lovely.

Night -envy about v and a.

Kurri love - come back and update us all.

Am going to rouse myself to get up and go to nice bakery- will bring back snacks and brew.

It is so nice to be pain free- I hadn't realised how long had been grinning and bearing it sad.

yes envy about V&A - also would love to see the Pompeii but only when less busy.
Bepanthen seems a good cream- I used it on my tattoo grin

AshokanFarewell Thu 04-Apr-13 15:57:06

Thanks everyone smile I got an emergency appointment with a GP and she thinks it's probably got a fungal infection because the skin is so damaged, I had that before, and Dr W said to expect lots during the chemo. I'm on a course of tablets and cream. If it's not at all better tomorrow she will prescribe antibiotics too in case it's bacterial. I'm also allowed to try using ondansetron to slow my bowel grin I'm sure Dr W will have something to say about that but I'm not seeing him until 1st May!

I finally got through to the clinic nurse and I'm not having the infusion. In asked why and she said he has decided to be nice to me confused I'm a bit peed off because I have done everything he said and made it past day 10 on the tablets so I was expecting to have the infusion. Hopefully that doesn't mean there's something wrong but if there is I won't know for nearly a month! hmm

amber thanks for the article, I shall have a read.

gig is that aloe gel internally or externally? The thing is I don't technically have diarrhoea, just that normally the stuff that is coming out would be going into my colon to be further processed and stored but instead it goes into my pouch which hasn't fully learnt how to cope with it all yet! Eventually it will apparently learn how to behave almost the same as a rectum. I'm not sure how but it sounds quite clever. I'm glad you're now pain free smile although a shame you've been suffering so long.

Also I did make a complaint and it's being kept on file until after my chemo has finished, or until he behaves horribly again.

MAS thinking of your two friends sad I hope they both get good news.
it sounds like you had a fabulous day out. I love Wahaca. I got one of Thomasina Miers' recipe books for Christmas. What did T make of soho? And thank you, hug is very much appreciated smile

thenight I didn't even know there were so many bum creams available until this happened. I didn't get on with Bepanthen but it is highly recommended. My fave is Coloplast Comfeel which is a stoma one so quite tough!

grey yep I'm in UK. My very brief backstory is that I'm 22, had my colon and rectum removed for bowel cancer caused by a genetic polyp problem, now having chemo, just finished 3rd cycle of 8. And I have an internal pouch where a bit of my small bowel is made into a little pouch to replace my rectum. I have a bit of a love/hate relationship with it! smile how are you doing?

notJ I do indeed have sudocrem in my bum cream arsenal, it is soothing but not as acid proof as others. I think if I mixed all the creams together I could create the ultimate bum cream grin

Anyway, am in a much better mood now so shan't bum anyone out any further! I hope everyone is having a fabulous day grin

Gigondas Thu 04-Apr-13 16:01:34

Glad you got some Gp help- fungal infections are a bugger as my mum had tons when she had tongue op/radio.

I drink the juice (mix it with something nice as it is evil tasting stuff). It helps calm inflammation in the digestive system which you are going to suffer doubly with cos of your surgery and op. it also seems to moderate bowel movements (dont ask me how) ie slow diarhoeaa and help constipation.

AshokanFarewell Thu 04-Apr-13 16:13:05

Ooh, I shall double check with Dr W and then give that a go, thank you gigs grin how are you doing?

I've also just had a PM from a lovely poster who had seen my post about my rash blush and has recommended another cream which I shall try after the anti fungal cream smile

And I've phoned another colorectal nurse to whinge and she is speaking to my surgeon and Dr W tomorrow to find out why my infusion has been cancelled and also to see if there's any other medication they can give me. Finally a result grin she's so lovely, I'm going to try and sneakily swap nurses!

Gigondas Thu 04-Apr-13 17:46:47

I am doing ok- pain meds working well so being careful not to over do it but have asked dr about dropping the codeine as I am wary of its side effect and if I don't feel need, why take it?

Trying to do some ou work too .

jchocchip Thu 04-Apr-13 17:46:50

Hi everyone. Just popping in on way home. Glad you have found a nice nurse, ash I had a good day at work, managed to survive on my own.
Out tonight with friend I hope. If not will go for a swim. Wonder how smee is getting on with the toucans!

Sometimesiwonder Thu 04-Apr-13 20:44:58

Hello my lovelies

Have been AWOL for ages (only because of work, I miss you all) but I got an email from the lovely sand ripples that mentioned there had been a kerfuffle here. Just wanted to add my support for the thread and the fact that it offers real support but also lots of fun. Let's face it, we all ned a bit of that to stop us going bloody mad.That was a real godsend for me and still is. I don't want to lose KK, Topsy or anyone else. Nor you,ginger, if we can help. Anyway I don't want to rake it all up again, but just wanted to give a vote of thanks for the support that's available here, every day.

I'm off to Whitby til Tuesday. Hooray! I wil have a paddle for each of you.

And a Hooooooge wave to sparkle rainbow!

Will report back in when I've shaken the sand out from between my toes...... X

Hooooooggggggeeee wave back to Sometimes! ......and big hug!
A very dear friend managed the development of latest Wahaca in London, so am thrilled to hear you love it,cos we love him and his family very dearly, actually he is married to my very best friend in the world, you know the soul mate kind of friend, who somehow knows you need them before even you know you need them.

AshokanFarewell Thu 04-Apr-13 22:06:41

Fairly quietly tonight!

Still no sign of KK sad I hope old lady dog is doing well

gigs indeed, no point taking more tablets than you have to! Especially if you have found other ones that work for you. I'm on codeine specifically because of its constipating side effects

jane I hope you're having a nice evening with your friend or swimming. I don't know if we will hear from smee until she gets back, did we ever determine where she was off to?!

sometimes have a lovely trip to Whitby! This thread is just fantastic isn't it.

sparkle that kind of friendship sounds lovely, and a good contact to have too, Wahaca really is great. Is that the Southbank one? I'm gutted I got ill before I could go there, I work(ed) in Whitehall, so very convenient. Might suggest a team lunch there if I ever make it back to the office! grin

ginger if you're reading still, I hope you are feeling better now as it sounded like you had some negative feelings you wanted to share the other day. Please do come back if you feel we can help at all, you'll see earlier I had a massive whinge and everyone was super lovely!

I'm having a productive day, I've sent off for some fabric samples for new (blackout) curtains for my room and now I'm looking at fabrics for curtains for our VW, which will soon be ready to join the hippy bus convoy grin

I hope everyone is warm and cosy, and having a lovely evening smile

jchocchip Thu 04-Apr-13 22:26:59

Didn't hear from my friend so waited 20 mins or so and then went for a swim. It was her idea to meet but she didn't reply to text- no doubt will find out later if all is ok. Decided that the swim is what I have been missing! Will go to Mums tomorrow after work and stock up the freezer. Will take course work with me and see how it goes. Nighty night!

We tried to get into the South Bank Wahaca in the summer but huge waiting time -we usually go to the Chandos Place one - I am addicted to the sonora salad and always have to have a margarita..dh and T love the various street food things- I love the beans with cheese too and the green rice. Think T really liked his walk around Soho - he loves London (London born boy !)
Hugs to all and have a wonderful time in Whitby sometimes xxx

It was the Southbank Wahaca, looks fabulous doesn't it!

Lovely sunny day here, thinking of taking the children out to lunch, to ease the fact that we need to do the supermarket shop later!

thenightisyoung Fri 05-Apr-13 12:05:19

Just popped in to say that the Bowie exhibition was awesome grin. Gig if you're back on your feet again after your ops before it closes in august I'd be happy to take you as am a member of v&a and can take a guest in (welcomes excuse to go again smile)

KurriKurri Fri 05-Apr-13 12:43:37

Afternoon all smile am back and refreshed.
Old lady dog is OK - although she has a problems with her ears which has flared up overnight, so that might have been making her wobblier than usual. We have a supply of stuff from the vet luckily so I can treat it straight away. She is looking at me hopefully because last time I had to clean her ears out and give her a tablet, she got a little plate of scrambled egg to encourage tablet taking grin

Thanks for all your lovely PMs - I wouldn't desert you permanently - you are all far too lovely, but I needed a little break - RL was catching up with me a bit (actually I hate saying RL - because this is part of RL, but you know what I mean)

Hope you are feeling more comfortable today ASho, chosing fabrics is fun, - I am envy of your VW.

Lovely to see you Sometimes, - we missed you, have a great time in Whitby, don't get blown away!

Hope you are feeling OK Gigs - quite right about the codeine, if you can manage without, or perhaps with just taking it at night or something, then you'll be able to see off the bunging up effects.

I do sympathise enormously with bowel probs. as I have had a lot of my own (I grew a watermelon sized Fibroid on the outside of my uterus a few years ago, and it stuck to everything it could including a large section of bowel, which they spent 9 hours carefully untangling + doing a hysterectomy.) But bowel never really recovered - I often feel as if I've been kicked in the back by a horse when I go to the loo. And of course chemo just added to it all! So I have no problem with bum and innards chat -and I think it helps to normalise it and make it all less 'taboo' if its freely spoken about.

I was talking to friend yesterday and she said that apparently when they send out those bowel cancer tests in the post (after age 60 I believe) 50% of people throw them away and don't do the test shock for whatever reason, so a lot needs to be done I think to get people to be more pro active about health.

Bowie exhibition sounds great TheNight - I love Bowie.

Anyway - that's a big old waffle, - sending love to all, I have read your posts and see there have been some nice outings etc. - hoep the rest of Easter hols goes well and good luck and love to all awaiting appointments/results.

Yesterday we had sleet and icy winds, today we are just down to icy winds -so that's an improvement hmm

AshokanFarewell Fri 05-Apr-13 14:07:58

Hmph I typed a massive long post then Mumsnet went down and it got lost! sad

I shall try again...

Welcome back KK and I'm glad old lady dog's ear problems can be treated easily, I'm sure that will be contributing to her wobbliness as it certainly does in humans, will she be getting scrambled eggs this time? grin I hope she feels much better soon.

Can't believe so many people don't take the tests, mind you I was mortified when I had to provide a "sample", especially when it got "lost in transit"! Lucky person who finds all the lost samples... grin

My dad is quite looking forward to his postal test and is hoping to send it directly to Jeremy Hunt! grin

I'm incredibly prudish about toilet business. I still can't say the word poo in relationship to myself. I tried to convince my ex that girls didn't poo blush and also used to wish they'd invent a way for people not to have to go to the loo anymore hmm - I was worried the universe had answered that wish in a rather cruel way when my nurse told me I needed an ileostomy and she wasn't sure if it would be temporary or permanent. Luckily only temporary as it wasn't the nicest, although a darn sight less problematic than the pouch has been so far <another stern look at tummy>

Ouch at the fibroid! shock and sorry to hear it is still causing problems.

jane I'm glad you enjoyed your swim and I hope all is well with your friend.

MAS the beans are so yummy. Glad T enjoyed the trip. Any word from either of your friends yet? Sending both lots of good wishes smile

sparkle enjoy your lunch out and I hope the shopping goes smoothly!

I'm still in bed having only recently woken up. Don't want to speak too soon but so far the magical cream combo seems to be working, pain has changed to a more healing kind of pain! smile

Have a lovely day y'all!

Gigondas Fri 05-Apr-13 14:32:37

Thanks nightisyoung- I may well take you up on that as hope to be up and about in June.

Kk- lovely to have you back and hope meds help old lady dog. Sorry everything getting on top of you- I better hurry up and watch the next Howard's way DVDs to send on.

Have been up and about for proper walk to town- coffee,library, lunch out and trip to cheese shop (so Brie and other sloppy cheese on The tray).
Resting up now as hip is so stiff- I feel about 300 years old. But so far managing to stay on lower codeine dose.

Ash- resting up sounds like what you need. I am pleased that more comfy now with cream.

Mas- I work near Chandos place and love wahaca . Not so good on margaritas tho wink.

Right going to try and do some more ou work.

ash I am squeamish about bottoms and like to pretend that girls don't poo grin I found myself in great discomfort trying not to mention the word diarrhoea to onc.
I find public lavatories a bit irksome but put that down to OCD,though am a million times better nowadays.
KK welcome back !!! glad old lady dog is feeling better,bless her.
Dh and T now lunching at Watford Gap on their way up to MIL's and I've eaten half a Lindt bunny.
News from friend isthat she has 2.9 cm tumour,grade 2 and according to ultrasound no nodes invasion - she's not having any surgery as her condition (Friedrich's Ataxia) is severely debilitating and surgery would make her even less able - so is going to have tamoxifen and will be seen in 3 months. Does this sound very weird to you ? I am worried but can't say.
Off to do some work now.

KurriKurri Fri 05-Apr-13 14:58:14

MAS - I am slightly surprised at now surgery, is your friend having any radio therapy? Its good there is no node invasion, so no chemo is probably the norm there, maybe it is just finding the balance between zapping the cancer and not worsening her other condition. In all honestly i would be slightly worried too for her, but am sure her oncy team know what they are doing and have discussed it well with her.

Gig - cheese shops are great, we used to have one (called the Mousetrap) in Norwich, but it is closed now sad - there is a market stall though.
Actually there is also a man with a stall selling home made soaps - those sort of big blocks of soap, which look very like cheese. So much so that he now wears a T shirt which says 'No, it's not cheese' grin

Howards Way would be great whenever you finish them, - I need my fix of Ken grin

Hope the hip settles down with a bit of rest.

Asho - I like your Dad's style grin

It must be doubly awful to deal with treatment though if you are squeamish/shy about toiletty stuff sad so you are doing brilliantly.

OL dog has been very sick, but has now curled up in a chair and is sleeping. maybe ear has made her sick, I have given her a pain killer and her drops.

I hadn't asked her about rads- I think chemo might be too much for her poor body though. Am sure she is in very good hands and she seems much relieved to know what's what rather than the limbo of waiting.
My secondary friend is being given capecitabine like me which I really hope will do the trick for her.
Poor OL dog - maybe her ears made her feel dizzy hence the sickness ?
All this talk of cheese makes me crave it a bit- will definitely have a wander by the cheese counter at Waitrose later. Like the soap man's t shirt :-)

jchocchip Fri 05-Apr-13 15:49:16

Mmmmm cheese. I spent years avoiding cheese and butter and anything high fat when I had gall stones. They seem to have settled now - never managed to lose the weight for surgery, in fact low fat diet I blame for putting even more weight on! I have managed to lose some weight eating cheese and haven't had a gall stones flare up for years... caught train so off to see Mum. Have some reading and assignments and crochet to do so mustn't mn all the way down. Happy weekend everyone wine

Hi Kurri - Poor old lady dog. Big hugs to her, I have just finished clearing up after a toilet emergency my old girl had, so we can sympathise.

Lunch out, at Sainsbury's - posh us, followed by the shopping went very smoothly. Ds now incapacitated on the settee, but he was having fun until the pain levels got too high. Speaking of posh, I did that BBC survey last night, when combining me and dh, we come out as established middle class, however dh on his own is technical middle class whilst I am "Elite" what can I say? wink how about what a load of rubbish!!!!!!!!!!

coorong Fri 05-Apr-13 16:44:06

Hello kk does this mean the grand tour to Norwich is off? If so, can I suggest re routing through the wine regions of France - with great big lounge seats to avoid DVT on the long drives.

Envy everyone's grand artistic / cultural / gourmet outings. We don't get to London often, but I'm sure my brother in law took my DDs to mahaca a ? At Covent Garden last year.

I do have to visit London sometime in the next month or so to renew younger daughters Australian passport (bloody schlep) - cultural suggestions anyone? I'm game for anything - as long as the cafe is good ........

Have been out walking everyday since I got home (not far or fast) but am absolutely wiped out today so have had to have medicinal chocolate !!!! (Puts few remaining pieces on the trolley ......... Then shamefully, and gollum like, snatches them back.....)

KurriKurri Fri 05-Apr-13 18:54:52

Coorong - the Grand Tour of Norwich would not take long grin Although we have got 2 cathedrals (Liverpool eat your heart out!), and a big permanent market, and Jarrolds the completely unknown world famous department store.

I don't go down to London very often, but I should do it's not that expensive on the train.

I have a made up pudding called Apple Cornflumble for the trolley (it is stewed apples with a cornflake/crumble topping) - it is very good in a school dinnerish sort of way grin

I am so glad the trolley made it over...I was getting worried

I am putting a rather lovely Jamie Oliver Italian Meatball pasta on the trolley, know this is not a fbs, although it could be if you eat enough of it.....but dc have turned their noses up at it as it is "too spicy" (really isn't!!!!) so thought you might like to share. wink Can have some Apple Cornfumble for dessert.......(oooo hark at me I am posh, Elite according to BBC!

KurriKurri Fri 05-Apr-13 19:30:45

Where is this survey Sparkle? I'd like to do it (DH won't be elite - he is as common as a common thing, I, on the other hand, am very high class grin)

topsyturner Fri 05-Apr-13 20:23:58

I'm the New Affluent apparently kk
Wish someone would tell my bank balance that !
<scrabbled together pitiful pennies to buy wine - 1st World Problems>

<passes Old Lady Dog , Pig/Dogs fave dinner of half a tin of tuna>
He too loves scrambled eggs .
Infact will eat just about anything apart from bananas and oranges .
Although he did spit out a piece of toast I gave him the other day as he wanted the piece with jam on it !!!

I am terribly un cultured .
I blame it on living in Belfast .
<ignores Ulster Orchestra / Proms in the Park / National Trust buildings / various museums.... >

Gigondas Fri 05-Apr-13 21:01:12

Shove up for an elite topsy . Meatballs and apple cornflake pud sound good- I took kids to nandos (gringringrin that was able to do something normal!) which was mixed success . It's very kid friendly but am not keen on spice on everything and nor was big gig. Mini gig just hoovered up chips and pitta.

Dh off to grand national tomorrow-I miss out on the day trip but can watch at home with fbs.

Kurri- that all sounds quite exciting for a tripgrin. DoeS old lady dog like pork pie? Have some nice one from butchers (offers it to old lady dog before sauron sees it).

Am home alone and had cauliflower cheese for supper -was yummy, some cornflake pudding would be very nice. Am not very happy about G National as worry about the horses.
I did the quiz and got Established Middle Class grin Dh got Technical Middle class - don't see how we got different scores though. Maybe I know more affluent people ?!

KurriKurri Fri 05-Apr-13 21:49:36

Ha - I am established middle class (surely a mistake, I've got elite written all over me) DH is traditional working class - I knew it, I sooooooo married beneath me gringrin

But actually it is quite weird because obviously the income/home owner answers were the same, he just knows fewer people than me and all the ones he does know do the same job as him. Is there a traditional anti social bugger class?

Old lady dog likes snacks of all sorts, she is very keen on tuna, don't think she has tried pork pie, but she'd definitely be up for trying it, and she would do almost anything for a sausage grin Yorkshire puddings panic her though - she has to hide them under a cushion to deal with later grin

jchocchip Fri 05-Apr-13 23:18:12

Nighty night - yorkshire puddings hidden under cushions grin

Mum didn't recognise me immediately when I got here sad
Good job I came, she is nearly out of loo roll and lots of shopping to get tomorrow. Will try and get up early and go for a run smile

topsyturner Fri 05-Apr-13 23:44:11

Oh Jane
It's about now that I'm so grateful that my parents are no longer on the scene .
It must be so hard for you <hugs>

Had an evening at HNDs
Usual messiness ...
Horse riding for DD at 10.30 tomorrow .
Gonna be painful .

Did a total bedroom rearrange today .
Am gonna be soooo confused when I wake up at 3am for a pee ...

Gigondas Sat 06-Apr-13 04:51:08

brew For topsy. Don't worry am doing ok but just woke up a bit achy so having a brew and some yoghurt (mas I know you would approve) before I can take some painkillers. Then back to bed.

Yes- it is sad about horses mas. There was an interesting thread on it the other day and I watched something last night about how they train them. They are beautiful animals.
Jchoc that is sad about your mum. Mil is similar - dh rang her to update her about me elc last week.she thought he was talking bout one of the kids and got quite upset/ confused . Tbh she doesn't really remember all the time about all her Gc Etc except the boys and I think that is mainly cos they are confused in her head with her sons.

This is one bastard disease no doubt but mental based decline bloody horrible too sad.

On which dampener, can I ask for cake suggestions as baking with big gig later (if she can drag herself away from the film brave which she watched last night - half fascinated , half from behind daddy when it was scary ). What would old lady dog like?

Gigondas Sat 06-Apr-13 04:52:33

Etc - I am not having an elc (shudders at thought- my elc with mini gig was fine but the idea of it did and does creep me out more yah. Any cancer surgery).

topsyturner Sat 06-Apr-13 06:17:57

<holds out shakey hand for coffee>

Am up very early (for me) today .
All because I rearranged my bedroom yesterday , and when I rolled over in bed I fell out !
My side of the bed is no longer up against the wall ...

jchocchip Sat 06-Apr-13 07:02:02

topsy I shouldn't smile at you rolling out of bed smile Got to get up and have a brew

amberlight Sat 06-Apr-13 07:33:24

brew for you then topsy? grin

MAS, I am not thrilled with the decision taken by the medical team for your friend. If she's not currently at one of the top cancer centres for the UK, I would suggest she gets referred to one. My suspicion would be that some doctor has thought 'poor dear, better off out of her misery' hmm since there are choices available such as Cyberknife that patently could do a v effective job of killing off the tumour in situ. Mine is of course not a medical opinion since I am not a doctor. But grr for her.

Gigondas Sat 06-Apr-13 07:40:03

Morning all- brew please.

I agree with amber- radio (even if not cyber) can be so focussed now that it isn't as drastic an option as it once was. I would defo want a second opinion.

grin At topsy falling out of bed- am doing a big spring clean of my room today (but no furniture moving ). Also having been surfing for nice scarves to hide the scars. Jenkins- we can compare scars when we meet up.

Sun is out here which is nice.

topsyturner Sat 06-Apr-13 07:50:05

Glad to have amused you all this morning grin

Sunny here too , but freezing . And judging by the cramp that's set in , in both my legs , we've got rain coming soon ..... <really old gimmer>

Horse riding (for DD) at 10.30 today .
Then this afternoon it's haircut time for DS (which he hates) and a trip to the wool shop for me .

Then home to do more jigging about in my bedroom <ooh er>
Anyone got any shoe storage ideas ?
I , previously , just turfed them under my bed . But I am trying to be good .
Oh and another thought .
Why do I own 4 pairs of leopard print shoes ???

Gigondas Sat 06-Apr-13 07:59:28

Cos you are channeling your inner bet lynch?

I like hanging shoe racks from ikea

notJenkins Sat 06-Apr-13 08:06:31

Bright sunshine here today. We are off for a walk with the hounds. Going to stick to the beach after the mud yesterday. Sand is much easier to deal with.

Re your friend mas is there contraindications for her condition and surgery ? If not I can't see why they would not operate. I was shocked though to find out my cancer is not treated for people who need help with personal care so that pretty much rules out anyone with a moderate to severe disability. When I asked the medics about it ( I work with with people with a disability) they just shrugged and said they are not treated. I second the suggestion of getting another opinion.

My scar is still very visible gigs and I need a good cover story. I am going with the 'my husband tried to behead me' at the moment. When the weather warns up eventually scarves will be too hot so will have to be out and proud with my scar.

Gigondas Sat 06-Apr-13 08:31:15

Yes I am not too fussed about scar showing eventually- it just when it is still quite tender and red. I will have 5 scars at end of it- that could rival most cage fighters ;)

grin At dh beheading you.

topsyturner Sat 06-Apr-13 08:44:21

Lolling at "my husband tried to behead me" gringringrin

Gigs just give your best 1000 yard stare and mumble something about "what happened in Nam , stays in Nam" .....

notJenkins Sat 06-Apr-13 08:51:06

I must admit though I have been hermit like since my surgery and do not have a 'scar question strategy' in place yet. My job involves seeing a lot of patients / families / meetings etc so I will have to develop a few witty lines. my scar is right on my neck and is very visible.
The redness is fading but I have a thick bright white line that is very noticable and I won't be able to hide it without a scarf. If I take to wearing polo neck jumpers they may think I have developed a love bite habit and as I am very big of boob polo necks are a big no no.
Any suggestions for how to deflect scar questions would be most welcome.

how about a light silky soft scarf,draped about the neck- could look v stylish ? Does Clare Balding have a visible scar now ? I suppose camouflage make up might be a bit of a faff.

I did laugh at your falling out of bed topsy - poor you grin
gig can you make a coffee cake, I love coffee cake...

Thanks too for thoughts about my friend - how do you think I should broach the subject of further opinions/poss. treatment ? She is in Derbyshire - is there a good cancer centre there ?

What amber said is a bit chilling - it's tricky as she has lived beyond her predicted life span with this disease as far as I can gather.
Her movement is very limited and she needs hoists for getting out of bed,transferring to loo and shower and sofa. She finds holding,grabbing things hard and has a catheter with wee bag. Her speech is quite slurred now as she loses muscle tone sad. She is wonderfully bright and used to be a teacher,music graduate who played the clarinet. We met when we both worked at Waterstone's and she was a lodger in my house for a while.
We fell out spectacularly and didn't speak for several years,then made it up and became very close again. We see her most times when we go up to visit MIL as it's on the way sort of. She is on her own - her dad is about but her mother is a total flake and useless and they no longer speak.

Am doing some work today and later am going out to dinner with parents (dad has persuaded mum to leave the house) and some friends of theior over from the US.
Boys seem to be having fun in Notts. They are off to lunch at the nicest pub restaurant which T loves and insists on going to- wonderful food.

topsyturner Sat 06-Apr-13 09:54:42

What was your surgery nj ?
My sister in law had a thyroidectomy and you can't see the scar now at all
but she does have skin like Donatella Versace cos she likes to bake in the sun
And her surgery was from one side of the neck to the other .

topsyturner Sat 06-Apr-13 09:58:09

Does your friend have a medical advocate for her other condition Mas ?
If so , she should get them to ask why she isn't being offered further treatment .

If she doesn't have one , I would get Macmillan on the case .

Or maybe if there's a support group for people with her condition , they could help ?

And make sure you put walnuts on that coffee cake Gigs !

notJenkins Sat 06-Apr-13 10:08:22

I had a thyroidectomy and am hoping the scar will fade to look like a neck crease. I have spent an unhealthy amount of time looking at Claire Baldings neck recently and you can spot the scar if you know it is there but it looks like a neck crease.
Mine is very thick and noticeable at the moment so am hoping it will fade over time.

mas a quick google of your friends condition threw up the frequent occurrence of heart problems. Is it possible she made the decision herself not to have surgery and is just not wanting to discuss it. I guess it is a tricky one to bring up but if she is on the ball is she likely to just be going blindly along with it ? Does she have a partner to fight her corner ?

Gigondas Sat 06-Apr-13 10:14:22

My mums neck scar isn't really visible now (was a 5 inch incision from just below jaw). She used oils like bio and vitamin e and also acupuncture on scarring (I have done this too and also castor oil which has worked amazingly well on my scars). I would say it was 3/4 years to fade in If that makes sense.
I can do coffee cake too for those that like it. And yes to walnuts on it!

That is very sad about your friend but good you made up mas.

coorong Sat 06-Apr-13 10:45:04

Morning all. Walk in the sunshine this morning which makes everything feel much more pleasant.

After my mother's thyroid operation (several years back) she treated herself to a string of fat pearls! So perhaps some lightweight but chunky costume jewellery? The problem with neck scarves is you might be mistaken for an flight attendant (coffee, tea or me?), or draw more attention to something that no one has actually noticed ...... But it's nt me, so I don't know how I'd feel in the same situation.

Landsend has some nice collared shirts - they might be useful

notJenkins Sat 06-Apr-13 11:33:39

You are right coorong I don't want to draw attention to it or look like a transsexual trying to cover up my Adam's apple !

I think after the first couple of comments I will develop a hard stare and a suitable response.

arf @ transexual disguising scarves grin
I am thinking that my friend who is pretty strong minded and fully aware of her situation may well be choosing this path herself - I don't want to wade in saying you should do this etc etc as I am certain she will have thought it through. She has no partner and I would say I'm her closest friend probably. It seems so unfair though.
I have just painted my nails a colour called Hello Sailor- v dark blue -in an attempt to disguise their awfulness.

Copthallresident Sat 06-Apr-13 12:39:29

I'm elite, me (as in when mum's friend's daughter was asked on holiday by a wealthy family and asked how much the air fare was and the mother replied "Aw no, us has us own plane") I thought it was a strange survey, no allowing for regional differences etc. although I am obviously the crème de la crème hmm

KK Glad to see you back and that OldLadyDog is enjoying her snacks. There is a man carries his very old doddery almost bald 17 year old poodle to the park nearby and stands with her in the river, she always has a new lease of life when he puts her in the water especially if goondog is around. Obviously not in this weather but I hope she'll be back when, if ever, it warms up.

Where shall we head with the hippy bus now? We could go visit Ned and nj. Don't they have a nuddy beach nearby, sounds our style, we could dance naked showing off all our scars grin

nj sounds like you have a strategy. I have forgotten my tit on occasion, trouble is by the time I realise why I was getting stared at the people have gone and I haven't had chance to come out with my rehearsed " Have you got a problem with it, because if you do don't inflict your issues on me. I've got other more worthwhile things to worry about"

mas gigs Friend and I thought we'd try and get in the Pompeii exhibition expecting to have no chance (last time she came we set off at 5am to try and get in the Leonardo exhibition and failed so we were feeling pessimistic) and at 11 they had tickets from 12.30 on. So it is nowhere near as busy as other exhibitions have been and wasn't that crowded. Perhaps everyone is assuming they have no chance as it is the school holidays?

It is amazing, the richest exhibition they have put on. Friend and I went in at 3 and were shocked when man announced it would be closing in 30 mins, we were so absorbed we had no idea 2 hours had passed. It is set out like a roman house room by room, a sort of roman ideal home exhibition, emphasising how like ours their lives were, so that by the time you come to the casts of the bodies it is all the more moving.

Then we got tickets at the half price ticket booth for A Chorus Line so we were on a roll. Chorus line was a bit dated, a sort of musical version of Columbo, with leotards and lots of staring into the distance talking about their dream, but then if you are into Howard's Way!

Glad to hear you are getting out gigs

coorong re London What do you like doing?

I am twice procrastinating as have some self assembly furniture waiting for me to botch up assemble

Copthallresident Sat 06-Apr-13 12:42:48

MAS I think that balancing life expectancy and rate of growth in a tumour is something that they do quite often in older people. I have a couple of friends whose mothers have / had tumours that were not treated on the basis that they were less of a threat to their lives than other problems. Something that should be discussed and challenged though and very difficult for you.

NedSchneebly Sat 06-Apr-13 12:50:41

Morning all smile sunshine here, which is nice, but still pretty chilly. DS lasted about 10 minutes on his newly repaired trampoline before he came in and complained he was cold!

Had busy week so far - wedding anniversary on Wednesday - went to this place for supper. Twas very yum - I had souffle, roast duck and chocolatey thing.

Thursday/ Friday spent up north with friends (wife of couple was the one who didn't contact me for 13 months and I called her on it). It was a bit awkward the first day as it was not mentioned and it was like the elephant in the room, but she did apologise on day 2 and said that if she had known how I felt then she would have been better at staying in touch. Was lovely to see them and I remembered why we were friends in the first place.

KURRI welcome back, lovely. The place wasn't the same without you. Sending you big Dorset smoochies and treats for old lady dog x x x x x

Sometimes lovely to see you too. Hope you're not working too hard out there? x x x x x

NJ I would hope that not too many people would so presumptuous as to ask about your scar. I would be angry and hmm on your behalf. . . I am sure that it will fade some more - my scar is barely noticeable after a year. Yours wasn't startlingly obvious when we met up, so I am sure it will fade into the realms of "well, you can see it if you know its there but its not the first thing you notice". Sending you big hugs.

ashokan yes, I am a primary teacher, working days a week in year 1. Started my career many moons ago teaching secondary and hated it, so I've come a long way! I've only been in year 1 for one term, having started back at work in January, but I didn't think I would love it as much as I do. Smaller ones make such progress that you can see happening in front of your eyes, its so satisfying. I'd say go for it! Maybe try and get some work experience in a school and get a feel for the different agegroups and see which feels best for you.

MAS maybe talk to your friend about how she made the decision about treatment? That way you can show her that you are taking an interest rather than telling her what to do. Such a difficult situation for you sad

Question - what should I do about travel insurance for France? Any tips for best company, or do I just list BC as an exclusion on the basis that nothing urgent is going to kick off in a week while I am away?

Epic post, and I can't go back a page to see what else I've missed. Will post this and read back further later on.

Lots of love and hugs to everyone - you are all amazing smile

sandripples Sat 06-Apr-13 14:51:49

Hi everyone, I'm here a bit more than usual as I have a horrid cold - have had it for over a week and I just don't feel like doing very much- so hope you don't mind if I join in for a little chat.

I had forgotten all about Clare Balding's op so even though I've watched her a lot over the past year I'd never noticed any scar at all.

Sympathies to Jchocchip - my mother had increasing dementia over 20 years and it was very hard. I found I just had to live in the moment with her and try to forget she wouldn't remember anything 5 minutes later.
Topsy - lets hope you remember where your bed is tomorrow!

Gigs - I hope you've been able to come off the codeine- I hate that stuff and think it makes me depressed. Not sure if that's usual. I hope you're OK.

Cold and very sunny here, and temp has crept up to 11 which is a record this year. I'm practising the art of indoor gardening - have ordered seeds and plants and have planted seeds on the trays in my DD's bedroom. The basil and cucumbers have germinated already smile
But I am so longing for some real warmth...

Navy nails sound exciting MAS!

KK - glad you're back!

Sometimes - are you Smee? confused Apologies if I've missed something.

Best wishes to all having treatment. I think I'm half way through my 5 years of Anastrozole now - I am very unfit though and need the spring to get moving again- I've done a few long walks in the past couple of months but feel sluggish. Still, I've got a week off in mid-Ap[ril sop hope my cold will have gone and that the temperature will be at least 15 degrees by then so that I can feel a spring in my step again....

Love to all xx

Gigondas Sat 06-Apr-13 15:34:54

Boo at cold sandripples - there have been some horrid viruses around that won't go. And completely agree that codeine does for your mood- today have managed to go without which is good, just a dose at night.

Ned- I think eurotunnel does full cover and don't need to travel with them. But I go with your logic on excluding the bc- I did that except my cancer seems to hear the word holiday and then do something that stops it sadhmm. From now on I am not holidaying , I am doing a very long trip to tescos (or that's what I will tell it).

I offer cholla bread from nice bakery and slightly overdone chocolate cake kids made.

Navy nails sound nice- I want to do mine but I am never sure on etiquette when you have an anaesthetic about it. Some places don't like it.

jchocchip Sat 06-Apr-13 16:36:12

Hiya people. Yet again weekend lunch and tea calls nearly touching sad. We are.going to eat later but medication should be better spaced.
Mum better today slept quite well. Have watched mastermind and university challenge and the Grand National. All runners back safe and sound smile

jchocchip Sat 06-Apr-13 16:42:00

Overdone chocolate cake sounds scrummy <snaffles large piece to have with cup of tea>. brew anyone?

sandripples Sat 06-Apr-13 17:11:40

Ned, re travel insurance. I was already insured through my bank when I was dx'ed. I rang them and they will still insure me in Europe but for nothing to do with the BC. So I travel happily in Europe on the same basis as you ie nothing is likely to happen suddenly. I did also go to Turkey last year though I'm not sure whether I was strictly covered for that. I felt confident as I know the guide where we go, having been 3 times now and he's a friend.
I must say that even though I feel recovered (touch wood because you can never truly say that) I'd be nervous about going far afield - partly because I'd want to be insured even if BC excluded, and partly because I know my veins are so knackered and if I had to had to have a drip or an anaesthetic I'd be utterly terrified. Its does put me off some of the trips I might have fancied before - but as we can't afford them its all a bit if a fantasy at present, anyway.
I know I'm not really well just now as even though its a beautiful day I lack the enthusiasm to go for a walk. however I've brushed up in the front garden and planted a pack of marigolds, to show willing.

Gig - you're right about horrid bugs around. I know 2 people who've got pneumonia round here - both Dxed this week. Glad you're managing w/o much codeine!

ned well done about making things right with friend - hooray smile
Waving to SR - feel much better soon lovey.
Cholla and overdone choc cake sounds just the thing. Hope your next trip to Tesco is soon gig grin
Have asked my friend about the treatment she's been offered and gather that it's just tamoxifen. She herself has chosen not to have surgery but don't think they've let her know that rads might be a possibility, or even chemo.

Btw - did any one watch the very excellent NHS programme last week and week before ? This week's featured a woman caring for her husband with dementia- it was very touching and quite heart breaking.

sandripples Sat 06-Apr-13 17:51:49

Hi MAS, I didn't see either programme but must catch up with it. Its difficult to make sense of the NHS I find. You hear dreadful stories, but my experiences as a patient have been excellent. Its a good idea to do a sort of 'day in the life of..' in real hospitals. I was struck when I was in, for my few short times, at how appalling some of the patients are - so lacking in respect for the people trying to look after them!

Copthallresident Sat 06-Apr-13 18:10:33

Perhaps I'm mad but following BC I decided I wasn't going to put off seeing the things I wanted to see around the world any longer, so we have travelled to some places that didn't even really have a properly functioning health system, so far without incident. I suppose I was nervous at first but I couldn't let it win and limit my life. And actually I know from living in Hong Kong that there are places further afield where you would actually get better treatment in their public health systems than here, you could add Australia and New Zealand to Hong Kong. I was actually rather blasé when SARS hit Hong Kong, what? Only a 6% chance of dying, seemed quite inoffensive compared to my lump (helped that my GP was an epidemiologist and was saying, ignore all the hysteria, it is clearly very hard to catch unless you are going to snog someone who has it)

I think also re health insurance there is a time limit on how long they can exclude it? Although my health and travel insurance predated my BC so they couldn't exclude it we have had run ins with life insurers and they have had to concede the point after my Specialist sent them a letter outlining my up to date prognosis.

sandripples Sat 06-Apr-13 18:40:19

Hi, yes I wouldn't be worried about Oz or NZ, but would be less keen on India for example.

I've actually been vbery lucky in that I travelled widely when I was younger so its not a big deal really - I got a lot of it out of my system. And I love Europe - the variety and languages etc. Its just that I know I'm a bit more wary than I was before when these things never bothered me at all. (I did go to live in Yemen with a 12 week old in my hey dey - so I was pretty bold back then!)

Its a good philosophy not to let these problems put you off though, I agree.

amberlight Sat 06-Apr-13 18:58:17

Did someone say brew? Yes please.

Gigondas Sat 06-Apr-13 19:46:37

Or wine?

Onc phoned and had long chat with her so feel quite reassured . Felt it was my most adult conversation yet with her as could ask what I want and listen.

Gigondas Sat 06-Apr-13 21:09:11

Drink, chocolate and scandy crime on- I am smile

jchocchip Sat 06-Apr-13 21:09:48

definitely wine time smile Mum in bed <lets out enormous sigh> Going to have an early night myself, but may look at the computer upstairs...

that's good gig - glad you're feeling reassured.
Am stuffed with food - all rather rich -dinner out with parents and some nice American friends...

topsyturner Sat 06-Apr-13 22:55:02

What Scandy Crime have I missed out on ???

Eventful day here .
DD goes horse riding every Saturday morning with her friend .
Friend got thrown , friend has broken shoulder !!!
Apparently only treatment the hospital offer for this is a sling and regular doses of calpol shock

Bedroom almost finished .
Got to attach hooks to side of wardrobe , for the hanging of handbags etc .
And have ordered some underbed storage containers for the leopard print shoe collection !

Hope everyone sleeps well tonight .
No bad dreams and no pain .
That's an order !

jchocchip Sun 07-Apr-13 07:11:54

shock and ow at broken shoulder. Both my gran and Mum broke theirs a long time ago and I only remember them being strapped up. It wouldn't be possible to put a plaster cast on...

Morning. I've woken with a painful elbow, sorry topsy

Will go and put porridge and brew on smile

notJenkins Sun 07-Apr-13 07:17:45

Glad you feel reassured gig hope you slept well last night.

jchop will the agency not space the weekend visits better especially as they affect medication timing ? Does you mum have a sw ? This sort of thing needs flagging up with them as some agencies are terrible for scheduling to suit themselves not the clients.

We went to Studland beach yesterday and had a walk. It was really warm out of the wind but the wind is still icy cold. We did not see any nudists fortunately. The children would have found that hysterical and I am not sure how giant hooligan puppy would react to a nudist but it would probably have involved inappropriate licking.

kk hope old lady dog is ok.

ned how are you fixed for lunch in the next couple of weeks ?

We are having a quiet day today as we have a busy week coming up. I may even stay in my pyjamas all day.

jchocchip Sun 07-Apr-13 07:28:07

I'm going to contact the social workers - they have not been active lately but this does need sorting. They arrived at 7.15 today so I didn't even get the opportunity of making her breakfast...

Gigondas Sun 07-Apr-13 08:01:58

That's pants about care workers jchoc. I agree a call to sw in order.

Topsy- It is Arne Dahl- the blind men. Vg (watched half and will watch rest tonight). Reminded me a bit of that thing with Helen mirren in as had strong female lead.

Poor dd friend- also if it is break wouldn't nurofen also help? I suppose it is hard to fix something like shoulder as nothing to anchor.

Mas -dinner sounds nice. Are boys home today?
Pyjama day sounds excellent idea pen. I know what you mean about it being deceptively warm. I had to argue with big gig that it wasn't warm enough for paddling pool yet hmm.

Had distributed night (ended up taking usual amount of painkillers which was trying to cut)- was stiff leg and hip rather than neck so trying to work out what I did yesterday that set it off. Probably cleaning up so there is a moral in there somewhere...

Will be quiet day today Pottering at home

oh poor little thing with broken shoulder sad
It must be v stressful jane worrying about your mum and her care...hope things can be sorted.
Slept really badly- forgot to take my meds until about 11.30,they're meant to be after food -dh normally reminds me -he'll be v cross. Took them as soon as I did remember - how stupid. They are back today- probably early evening,staying to have lunch with MIL.

sandripples Sun 07-Apr-13 09:41:03

Ouch for broken shoulder!

Sorry about broken nights, Gig's pains and MAS forgetting meds - I do tend to forget mine now and again - feels so stupid when its meant to be every single night so how do I forget? It happens when I'm tired and just fall into bed.

Watched the Scandi-crime - yes good although must admit my fave scandi of all remains Borgen. I liked the scandi aspect without the nasty bits!!

Copt - I'd love to go to that exhibition and your description makes me want to go even more!

Planted more seeds yesterday - just nasturtiums. No room left in DD's room for any more now.

Going to see friend with pneumonia today - we'll stay at least 6 ft apart tho!

jchocchip Sun 07-Apr-13 10:14:16

sad about disturbed night gig and mas forgetting meds is easy, don't be too hard on yourself.

I've not brought my tamox with me, but decided not to stress it, only two nights and I'll be home tonight.

Aargh. been trying to sort mums filing and find her cards. Did find receipt that shows MP has been shopping for Mum!!! Which mum had mentioned and I didn't quite believe. Aargh just makes us look inadequate. There is food in, honest. And milk delivered daily. Mum can't get to kitchen to see that carers are telling porkies. The regular carers know which cupboards to look in and their way around freezer.

Off to Waitrose to stock up on mini meals. On push bike, no buses on Sunday round here.

envy of seed planting. A nice day potting up is just what I could do with.
Hey ho at least dinner is in the oven and I can come back to Lamb casserole!

topsyturner Sun 07-Apr-13 10:15:09

Morning !

No falls out of bed last night , I'm sure you'll be glad to know !

Watched half of Scandy Crime last night , thanks for tip off . It's quite good isn't it ?

DDs friend is only allowed calpol as apparently nurofen is now contra indicated for broken bones .
Slows the healing .
Who knew ???

Jane unfortunately you need to be a bit of a moaner (and sometimes a shouter) in this situation .
Social services and the care agency need to be barked at to get their act together !

Grrr for bad nights Gigs
Hope today is better for you .
Is it tomorrow that you are back in hospital ?

Mas shall I tell you off ?
That way you won't have to tell DH that you forgot to take your meds ...

Snorting at the thought of Giant Hooligan Puppy "interfering" with the nudists gringringrin

AshokanFarewell Sun 07-Apr-13 10:43:54

Hello everyone,

My skin is healing up, yippee! Bit worse today and had a rather disturbed night after a meal out last night, obviously ate something that disagreed but I can't work out what as I ate things I eat safely at home confused still was lovely to go out and feel almost normal apart from two loooong loo visits blush it was with my aunt and uncle so hopefully they understand.

Anyway the magic cream combo is a layer of metanium and then a layer of vaseline if anyone ever needs a magic bum cream! smile

Soooo many posts since yesterday so I'm not quite sure where to start...

ned thank you! I still have links with my old primary school through church and things so I'm hoping to get some work experience there maybe in September as I'll hopefully be in better health by then! I did a week there about six years ago now, I can't believe how long it has been, in reception/year 1 and loved it. I do think that is the age group I will want to teach but it would be good to get experience of other groups too just n case, I'm thinking about possibly doing an early years PGCE as my uni offers one, but not really sure yet! Lots of research to be done first smile

jane sorry about your mum and the careers, I hope the social worker is able to sort it out quickly sad and sorry that she didn't recognise you straight away, that must be very hard.

topsy yay for new room! I hope you didn't fall out of bed last night! smile did you find a good shoe storage arrangement? I have an extending shoe rack from Argos which is pretty good - holds loads of shoes and it's not even fully extended at the mo.

MAS glad you've got a bit more info about your friend, if she has decided against surgery do you think she would also decide against chemo and radiotherapy if they were offered? It must be a very hard decision so I is good that she has you to support her smile grr that her mum sounds rather crap!

gigs sorry you had a rubbish night, cleaning is definitely dangerous! I hope you're feeling more comfortable again soon. And I'm with big gig. I still get the paddling pool feeling when it gets sunny like this blush grin

Good news is that I found a winter coat in an online sale and ordered it after ages of thinking I need a nice winter coat instead of my kagoule and so now it is probably going to be about 25 deg every day until October!! grin

sand have a lovely time with your friend, I hope you manage to avoid any infection! smile

Sorry to everyone I've missed, my post as getting very long and rambly. I hope everyone is having a good day so far smile

coorong Sun 07-Apr-13 12:38:26

ash I'm in the middle of my secondary science PGCE (part way through my second teaching block - so hopefully won't have to have chemo which would stuff things up).
Anyway (back to you) - I enjoyed large parts of my PGCE, but there is a lot of work, mostly paperwork, preparing, assignments etc lessons. So,much so that I usually work most night until 11pm, and all day Sunday. If you have children p, you cannot be a complete parent and I've relying enormously on my DH (who's great). Unfortunately there's little you can do before you start, other than spend time in classrooms interacting with little ones to see how they assimilate stuff, and getting lesson ideas from teachers.
Am in bed listening to the youngest trying to play the recorder (ouch!)