All who’d like to communicate via facebook while the site is down, I’ve created a private FB Group ‘March’. Friend me and I’ll add you to the group. xx
Hi everyone - wow definitely don’t feel alone now and nice to hear we all have the same strange thoughts!
M&S must be doing a roaring trade!!
I’m not on facebook I’m afraid but happy to text anyone who PM me.
My bcn spoke to me today to let me know I’m on the ‘discussion list’ on Thursday and then should have a date within the following week.
Totally agree this being in limbo is so difficult to deal with- not sure how many restless nights I can manage worrying about how many things need to be done before the op. I’m still at work and still being mum and wife so need to start planning and ticking things off my list.
Its lovely to be reassured by those ladies further down the line - lets hope we can all be so supportive in a few months time.
Claire xxx
Yep. I’m up & not really able 2 sleep as thinking about it all. U no the story, u worry about how the OH will cope wiv the kids & how the kids will cope wivout u being there etc. I hav bn looking at some mags as I can’t con- centrate on a book , but I do get a bit jealous of the girls in the hair commercials, models looking fabulous wivout any breAst cancer worries. Do u ?
I hav bought the ap 4 my iPod of the 'iquarium. It is a vitual fish in a fishtank and it is meant 2 relax u. Has anyone else tried it?
Lone x
Hi everyone, I have my appointment with the surgeon tomorrow when I should be given a date for surgery and some more info about what kind of reconstruction they will be doing. Trying not to think about it too much cos it all terrifies me!
I’ll keep you posted on how it goes.
Lone-not tried the aquarium game as I don’t have an ipod. I’m a bit addicted to bejewelled blitz on Facebook tho!
Debs
x
Yup, feel we might be single-handedly keeping M&S going - but they have a good selection, and quite reasonable.
I had my pre-op today. Just did bloods, wee, weight etc etc. Still feeling really quite ‘distanced’ from the whole thing. Can’t work out whether I am coping well, or just burying my head in the sand! The op should take about 2 hours, and then a couple more hours in recovery, before going back to the ward. I had thought ‘great’ when I heard my op was planned for 6pm, and that I would be able to 'sleep it off, ’ but have been told that I am to be woken at half hour intervals through the night!! They also suggested no kids the following morning, perhaps just my husband, as I would still be groggy and a bit out of it. I am glad they said that, because I don’t want the kids seeing me looking like death warmed up, and then panicking.
So am as sorted as I can be for the 10th - just need to wash my new bras and things, and get packed. I just hope I do not get cancelled at the last minute!
How is everyone else doing?
Tracey x
Good to hear Tracey that you have your date sorted -your turn next Debs.
Sleep deprivation is really a problem now, I’ve always been able to drop off in seconds and sleep like baby, in fact before all this is was just the ‘age’ thing of being woken early for a wee! Trying really hard to concentrate on work but every day I look paler and more tired so people starting to nag me to start taking it easy and I don’t do that very well!Funny really that I didn’t and don’t feel ill but am starting to look it!!
God knows what I’ll be like after the op!
Haven’t tried the fish app but will download it later and I may even try to set up on facebook, mind you the family already think I’m spending an unusual amount of time on the laptop doing this - I never use it normally. In fact OH thought that as i was still up late (which is also very unusual) I’d joined an on line dating site!
Sorry girls- had to show the evidence but didn’t let him read anything!!!
Thanks for the messages I got today and I’ll def txt when the site is down
Clairexxx
Claire its not the falling asleep I have a problem with its staying asleep! I find I’m tossing and turning all night and waking up with hot flushes. I sleep with a fan next to the bed now so I can turn it on to cool me down whenever I need to. And when I wake up in the morning my first thought is always “Oh crap, I’ve got cancer!”
I think I’m just getting anxious about my appointment tomorrow and what lies ahead. Hopefully once I know what the next plan of action is I might relax a bit more.
Debs
x
I have a free Android fish tank, but if you buy the whole app you get to choose fish (piranha? Conger eel? Great White Shark? Those would suit my mood - especially if you get a little diver for them to attack!)
I’m feeling horrid today, burst into tears when my mum said something fairly mild this morning and had shaking hands and felt sick for my pre-op this afternoon. I’m not usually like that at all.
As for sleep, well I seem to do it, but I feel as though I haven’t - a bit like being on night shifts.
I’ve ordered the cami tops from M&S to go with my pyjamas, their profits will definitely be through the roof thanks to us. Maybe we should buy shares?
We’ll all get there I’m sure, and it’s nice to know I’m not the only one being scared.
Debs good luck for tomorrow xx
Take care everyone, Lynne xx
Hi All,
I know how you all feel about the sleep issue. Major problems with this at the moment- too much mulling it over.I was back at work today as well and felt quite exhausted.
I have an MRI and US on Thursday to measure the tumour. Half way through chemo there was no change but I’m hoping that the tax has done the job.
I now have an appointment with a plastic surgeon who, if I recall is exceedingly handsome. I hope he is good with his hands too. I should get a date for surgery on Monday!
It is creeping closer and getting a bit too real!
Hope you get a date soon Debs
Sue
HI ALL
I’ve downloaded the app but not even looked at it yet- was so tired last night that I had to go to bed by 9. Think I slept a bit better!How did your appointment with the surgeon go today Debs?
Just been and had my nails taken off - I started having acrylics 4 years ago when I got remarried and was hooked. They needed re-doing and as I’m likely to go in soon I thought they ought to see some daylight and get some strength back. It feels really odd, but I treated myself to a lovely pedicure and had my toes painted a gorgeous turquoise(bit wacky for me).
Are you feeling a little perkier today Lynne?
Hope everyone else is well
Claire xxx
Hi Claire
I saw the surgeon today and he has booked me in for mx on 17th March.
We have decided that I will just have a tissue expander for the time being as I have to have another lot of chemo and some radiotherapy so they don’t want to delay that. Also, radiotherapy can damage a reconstruction so its best to have that done after. Gives me a few months to decide what kind of recon I want.
I had my acrylics taken off before my last op. My nails look a right mess now! Can’t wait to have them done again after my op. A bit of pampering will definitely be in order then!
X
Hi Guys,
Just to let you know that I may change my name to Moan, instead of Lone! he he. I am finding it really difficult not having any information from the hospital about a pre-op date, the name of the surgeon who will do my op and an op date. Just telling me that it could be Tues, Wed, or Thurs next week is just not good enough. Don’t they realise that I have kids to organise and prepare and i need to prepare mentally for it. My surgeon went off sick on the 15th of feb and I feel that they really should have sorted it all by now. My BCN is also on leave next week, so I am glad that I can get in touch with you guys as I am feeling a bit abandoned.
I also have some sad news about my virtual fish… the site crashed and I have lost him! I might try your site lynne as I like the idea and concept.
Like the rest of you, sleeping has been awful at night. I also get the night sweats, but have got a ‘chillow’ to try. It is a pillow that helps you to cool down. Does anyone else have one? I have taken it out of the box, but haven’t experimented with it yet. Will let you know if it gives me wet dreams… ha ha
Has anyone else who has had the chemo first still not got their appetite back yet? I am dreadful. Just can’t get interested in eating, and because I am tired and have no energy and I am not exercising, the one meal a day that I eat is just staying there and so I can not even boast any weight loss despite it.
Am pleased for you Sue that you get to meet that hot plastic surgeon again.I hope that you get the results that you want from the MRI and US tomorrow. I will be thinking of you honey.
Hope you are feeling less teary lynne? It is just the anxiety mate. It is hard to keep distracted 24/7 isn’t it? I have been watching some comedy films like ‘knight and day’, ‘the hangover’ and even got caught up in the moment of ‘mamma mia’ again. Hope you can find something that will help you just chill honey. We are all here for you to just let it out if you want?
Debs: Am glad you have a date honey, and what a date it is too. St Patrick’s day! Be sure to wear something green! I will let you know about the ‘chillow’ to help with the hot sweats etc.
Tracy: Thanks for your post about what to expect at the pre-op. That was really helpful. Am glad you have your date now and can get your head prepared for the op.
Claire: How is that list going? Have you got things sorted? I was doing a bit of preparation myself today. The thing is, because I haven’t been on top of things at home, it took me ages to find things and clothes etc. My OH has found some very unusual places to hide some of my things. Oh well, I will be moaning more when I am back in the boring routine of doing all the domestic duties us girls have to do.
New info: I got given a heart shaped pillow when I went into see the BCN from the W.I. Apparently you use it at night to fill the gap with the missing boob so you don’t get that ‘kerpluck’ feeling when you roll over. Has anyone else heard of /tried this?
I was also advised that the Nicola Jane ‘lola’ bra is a very good one post op for ladies who are 38 C and above. Hope this helps?
Hope you are all managing to distract yourselves from the anxiety of waiting?
Lotsa love,
Lone xxx OOOOppsss I mean Moan!
So we have got Lynne on 8th, me on 10th, and Buzzy on 17th so far? ‘Moan,’ hope you get a date soon. It’s like mental torture isn’t it? Would be very interested to know where I can get one of those heart shaped pillows? I have not come across them.
Sue, I have absolutely everything crossed for you. When do you get the results? Too much to hope that they tell you at the time?? Tax might seem like evil stuff at the time, but hopefully it has worked its grim magic on the bits it was meant to. Have we all had upfront chemo out of interest?
On the sleep issue. I was told I could take Sleepeze or Nitol, which are both anti-histamine based. They seem to work well. I have tried the low dose of Sleepeze (quite often with a glass of wine; naughty), and have slept a lot better. I have also found some relaxation classes that I am going to try, in the hope that if I do wake up at 2am, I can get the ‘**ck I’ve got cancer,’ out of my head. I do think it takes a while for the steroids to get out of your system, and also to break the waking-up habit. I hate it though, it just seems relentless if you can’t sleep - 24hr days, instead of 12hr ones.
How are we all doing on the ‘wobble’ front? Everyone ok?
Tracey
X
Just wanted to say good luck to you ladies. I had my MX and immediate recon last November, and everything went well and I’ve had no problems at all. Just be kind to yourself, let people run around after you and take all offers of help.
The V-shaped pillows are great - you can get them at Argos.
All the best
Rachelxx
Dear everyone, thanks for asking, I’m feeling a bit better today as I had a visit from a friend yesterday - we just sat and ate and drank tea and chatted for about 5 hours. She made me a carrot cake with icing, but Honey the dog stole it from the worktop and ate it, so I’m devastated about that, sod the surgery!
Claire and Debs, sad about your nails, you can get funky new ones when it’s all over - I saw some with tiger skin tops on a tv ad last night. The turquoise toenail varnish sounds fab. Mine are always a mess if it’s any consolation - I’m not allowed acrylics or varnish at work for infection control, plus I garden a lot and build walls and do arty things so I always end up with fingers that look like they’ve been manicured by a rusty angle-grinder. Most attractive, but then I’m a country bird.
Lone you are not a moan! I think it’s horrible how you’ve been treated, and having a family to worry about on top makes it even worse if that’s possible. You must be due lots of good karma with all that. Chin up chicken, it will all be ok.
The heart-shaped pillows are given out to everyone at Plymouth after breast surgery to keep your arm away from the sore bits, and are also good for holding seatbelts out of the way… My mum found hers fantastic and carried it everywhere for about a month. I think the WI donated them here too, so hopefully all of us will get one. Mum’s was blue gingham with little flowers which isn’t really my style, but I think I’ll probably be looking like nothing on earth for a bit anyway so it won’t be too much of a problem!
I’m quite jealous about Sue’s hunky plastic surgeon and his good hands. Hope the chemo worked Sue, lots of luck today. Can you have the recon immediately?
I’m not having recon, but I’m thinking about having a funky tattoo along the scars once it’s all healed and if everything’s ok. Any ideas for designs would be lovely - my friend Belinda thought sea shells would be good as I’ve got a mermaid mosaic in my bathroom and she has scallop shells as a bra. I quite like dragons too, or maybe something delicate and flowery.
Tracey I’ve been lucky enough to not need chemo, and hopefully won’t need anything else either provided I get no more surprises from the pathologist. I feel for you guys, as at least I’m well and fit going into the surgery.
As for wobbling, I’m having an unreal day today and not thinking about it. Just called the surgeon’s secretary as I hadn’t got my letter, I’m in at 0730 on the morning list which is good, if you go in later I think you’re more likely to get cancelled when the beds get filled with emergencies so fingers crossed. If my op got postponed I think I might flip completely. I feel for the dateless ones.
We’ve got 3 of us in the facebook secret group so far, anyone else up for it?
Big hugs to you all, Lynne xx
Hi Claire
Got your message, Hi everyone hope you’s dont mind me joining here, had my MRI scan today hopefully going to get results tomorrow, OMG thing’s are moving fast which am so greatfull for.
I have lobular cancer in my left breast just waiting to see if it’s in my right if it is then the two are coming off, going to write a list of questions to ask consultant tomorrow, taking my friend Lynne with me cos she’s just fab and know’s what to ask as she is a nurse and worked in oncology and still has lots of friend’s who work in that dept so am constantly on phone to her, I live in Troon, Ayrshire, have 2 kids, son aged 13 who is autistic and daughter aged 9 who is dyslexic so got my hand’s full…now got this but I’ve got a fantastic partner and great friend’s close by Thank goodness.
Speak to you all soon
Katie xxx
Hi Katie, best of luck with the results. Sounds like you do have your hands full, thank goodness you’ve got a lovely friend with an amazing name! PM’d you too,
Lynne x
Hi All,
Welcome Katie, you are in good company. I hope all goes well with your MRI. It does sound like you have hands full.
Bad news on the cake front Lynne, your dog is in the dog house then.
Mr Hunky plastic surgeon has cancelled on me 
but the breast surgeon can do the temporary reconstruction :). I should be right behind you all with a date for the op when I go for results on Monday. US operator was positive about some shrinkage so hopefully the tax has done it s work. MRI scan was ok apart from getting a nosebleed beforehand ( another chemo SE- thanks Tax)so when I was in the machine, face down with boobs in the boxes, nose started dripping again, snot from one nostril, blood from the other. :0<<<<<<
I did manage to stay in the scanner and they put paper towels under my nose to catch the drips- not a pretty sight!
Hope everyone is ok. I’m not looking forward to the clearance as I am right handed and it’s the right side I’m losing the nodes from.
sue
Well it looks positive then Sue, apart from the disappointing absence of the plastic surgeon with the good hands, and the snotty nose-bleed. Got everything crossed for you, hope you’re feeling ok xx
Hi Guys!
Welcome Katie! I hope you and Sue get good results from the MRI scans. Let us know how you get on guys?
Poor Lynne, waiting for that cake and then missing out on it. Is it wrong for me to laugh at that naughty dog? Bless him/her! I’m loving your tattoo idea Lynne. That sounds great! Try not to think about them cancelling the op matey, if you can? You have enough to worry about. Oh yeah, I will join the facebook crew too, once I know what the hell to do… he he. Please be patient with me?
Nice to hear from you again Rachel. Thanks again for your input sweetie. We need people like you to remind us we will get through all of this.
I am still called Moan until I get my dates for the op. he he. But i did have something amazing happen today: My dad turned up from Australia!! Without any warning! I think he was so upset hearing me crying over the phone etc about all the cr** that has been going on he just wanted to give me a hug. My best friend from Australia is coming on sunday, which was planned, so I will be well and truly looked after when I finally get my bl***y surgery.
Hope we all get some well deserved sleep tonight? I am soooooooooo tired. Just wish I could switch the brain off and the kids sleep through for a change.
Is anyone else on clexane injections for blood clots?
Love and hugs to you all.
Moan xxxxxx