Morning girls,
Lulu you must have unearthed it as soon as I decided to shut down the I-Pad and my body!! I am sure I was still roaming at three. There was a programme on Radio Four yesterday afternoon when I was driving back from Mothers. It was about the increase in the use of sleeping pills. The learned doctor waffled on about GPs overprescribing these and the type if people that took them. He was advocating they were no longer given out because it was proven people that took them died younger. Not once did he mention people with diseases like Breast Cancer newly diagnosed and undergoing treatment etc. as cause of this result. It reminded me of my G.Ps reluctant prescription of one packet.
Twinkie the learned Rev is so correct. I too now remember the FEC Flop about day three plus backache fom the injections. Brave you giving them to yourself. My husband attacked me with them. I had become a needle phobic after my first cannulation (four people tried very hard and failed) and resulting Hickman without sedation just local.I used to let students learn on my veins…but no longer. Cowardly custard that is me!
Hi I’m interrupting this thread with a daytime entry, so I do apologise!!
Cackles, I am also cowardly custard when it comes to cannulas, hence Ive had a Hickman line since Jan 2011, But final treatment yesterday, I’m booked in to have it removed next tuesday, And I’m so nervous about it!
Can anyone tell me what its like having them removed, I dont think I was so bad having it put in (under local) because I was in shock still from everything being thrown at me. The nurse told me they just pull it out like a wound drain, (yuk)
Please reassure me!! 
Truddles they had to catch me first but it was a doddle. really and truely no pain at all. Not even any sensation. Just the sting of the local. I really got to love the thing like you . I almost hated to see it go…mad mad mad woman!!
Trundles I posted earlier today and my post was zapped into cyber space and I was so skunnered (Scottish word for peed off) I couldn’t be assed rewriting it.
Anyway I’m getting my Hickman out on tues… Was told that I would get local anaesthetic and then an incision and bit of digging about to get the cuff out… I’m presuming it wouldnt be any worse than getting it put in.
What I am surprised is you getting your line out so soon after your last chemo… Your still at risk of infection and neutropenia seprpsis for the next three weeks so having it removed so soon could mean any admission would require cannulation… My onc said no removal until three weeks after last chemo just in case.
I know some units put lines in prior to chemo but if you had it put in for dodgy veins it might be better to hang on to it for another two to three weeks.
Btw mine was put in under local and although it wasn’t fun it was ok-ish I just la-la-la-ed my way through it much to the amusement of he team looking after me.
Clare i just missed you as went to bed at 5… As for the elephant legs iv been having that problem too… But no special bed only a few pillows to rest my feet on at the other end to help drain the fluid… and restarted my water tablet… Managed to go from 10st 7 at the weekend to 9st 12 this morning… Did this in reverse just before Christmas when I had to stop taking diuretics… Doesn’t help that I over done it at the weekend… Onward and upwards xxx
Today was my not having chemo today day… So been on pink fizz… And after eights but got a bit tipsy and sat on one which melted all over my bum and looks like I pooped my self… Only smells and tastes nicer… (not that I have eaten poo!)
My daughter had genetic appt tomorrow she’s pretty anxious but they aren’t gonna take bloods just chat other aout her risk of inheriting my brca 2 gene and what that means to her.
Sleep well sleepless friends
Love lulu xxx
hi ladies
Im up again. Have been having a few good nights but this last week up late most nights. Read all posts but have not been posting.
Lulu just want to say hope it goes well for your daughter. My friend is in the same position and is really worried for her daughter who is going soon to speak to those in the know.
M x
Maj it very weird because that is the main part of my job… Completely different when the shoe is on the other foot and even worse when it’s your 20 yr old daughter with learning disability and mental health problems.
Hope it makes sense to her.
Lulu. XxxxxX
I’ve not been sleeping at all well, my tummy upset kept me up for most of the past few nights but as I felt so washed out I couldn’t summon the enthusiasm to post. Today I’ve felt better and even done some energetic housework (dirty word), but it’s knac*ered me so hope I sleep well tonight. We’ll see!
It’s been gorgeous weather, I’ve had the door open and all windows - so lovely to have fresh air enter the house. I’m feeling optimism in the air, wonderful.
Lulu, good for you celebrating with a glass of pink and choccies, I had to laugh at you sitting on a choc - waste of a choccie though! I do hope your daughter finds her genetic appointment OK, that she’s not too upset. When will she have the brca test? It must be very worrying for her and you, the sooner she’s tested the better, and hopefully she hasn’t inherited it and can then be free of the worry.
Sleep well everyone, wishing you all pleasant dreams.
Hugs, Libby x
Hello Ladies
Afraid I am not able to sleep once again so put another log on the fire and browsing the site as my satellite dish has got a problem and I don’t fancy looking at a blank screen. Hopefully they will manage to fix it before Cheltenham starts in 2 weeks. I was supposed to go this year as a treat from my kids, but alas it is not ment to be. Well just have to aim at next year with a bit of luck.
Hope you all will get to sleep soon
Love Alanaa and Fat Cat xx
Hello Lulu I am stalking you again. I totally agree with you re the Hickman removal it would be such a pain to need fluids or drugs just after it was taken out.
Trundles it might be worth asking if you can keep it for a few more weeks. Mine was removed four weeks after the last Tax and bloods were checked first to see if it was ok even then to do so. As I said before it really was a doddle. Even although they make a little nick it only needs a steristrip or two. I felt quite vulnerable without it, daft old bat that I am.
Lulu you really deserved the pink stuff ( lips being licked and throat like a desert) I would love your diuretics. My bendroflurazide is useless or perhaps I am in the renal dept or it could be the fluid is from over indulgence and I have a fatty liver. Not to fret every drop was fun!!
Majesty reading and not posting …is that allowed ? I think not you lazy b…put fingers to keyboard!!!
Lulu it must be hard to worry about your daughter’s reaction tomorrow or is it today. She is so lucky to have such an upbeat knowledgable Mum. Make sure you check your rear end before the appointment.!
Libby snap …it must be the sun. I even cleaned the silver my most hated job . We were burgled a few years ago and one of my reactions was relief because I was going to clean the bits and pieces that day but hadn’t. I hope the gut problems have gone for good…did you loose weight!
Alanaa have you got any good tips from the horses mouth!!
It is good to see Twinkle is sleeping for once.
Nighty night
Cackled
Hi Cackles
sorry but no sure tips I just love horses and everyting connected with it. Have to settle for watching it on the tv for now (if the darn thing would work) as I am not able/allowed to ride for a while to come.
Does anybody has any idea if you get side effects from Femara how long it would take for them to appear? I have been on them for nearly a week now and nothing so far. Hope it will stay that way as I have enough bother with my still open wound. Earliest start for Rads will be April now for me. One step ahead and 2 back at present.
Alanaa and Cat xxx
Thanks ladies, not so worried now.
Ive just finished herceptin rather than chemo as that was last year, and herc doesnt affect blood count.
I have become attached to the line though, I understand where Cackles is coming from. I have very good veins but just stubbornly refused anyone accessing them, The doctor laughed at me when I told him I wont have chemo if i’m forced to have cannulas!
; But what is cheering me up is that this year, I’ll be able to wear tops again which dont sit on my neck to hide the line.
I’ve just finished work (6pm-midnight) and I’m having a cuppa and I’ve cleaned out the hamster, I am almost becoming as nocturnal as she is.
Lulu, choccies always seem to end up on the rear, whether we eat them or sit on them 
Best wishes to all the nocturnal readers, lurkers and posters
love Truddles xxx
Allanaa, some people have problems from day one. I took Femars the original tablet for three months with absolutely no problems. Then after chemo and since December I had really bad knee and foot joint aches and stiffness. I had been put on the generic cheaper brand of Leterazole by Tena. I know it is the same drug as the Femara. . My knowledge as a cancer nurse specialist tells me there is no difference other than the non important base ingredients. I tell people all the time generic medication is the same as the original brand. BUT since I found an old packet of Femara and used that again this month as an experiment ( I remembered the lack of problems pre chemo) I am nearly pain and stiffness free. If doesn’t make sense. It could be a coincidence, so I will take the Letrazole by Tena again when this months pack of the original is finished. If the discomfort comes back I have the problem of medical staff saying it should be the same and thinking to themselves I am imagining things.
So after that long and no doubt boring ramble …the answer is hopefully you will be fine. Many ladies have few if any problems. Those that do of course post it on the Forums, and those that are ok do not because they have no need to…
Sleep well
Cackles
Hi Lulu,
Just wanted to add my best wishes for your daughter’s appointment.
As she has mental health issues are there any support strategies offered for her to contact? Or is it just a case of ‘get on with it?’
I use mental health services in my area except there are none!
And I’m too depressed to fight the system usually…
So was immediately concerned for your daughter.
Do hope she can cope with this process. I know she has a great family network to help her but sometimes an independent listener can help so much.
Big hugs to you as you struggle on and to your daughter.
Wx
Cackles, hope you are now in dreamland. I’m impressed to hear you’ve been cleaning silver, that is an awful job! I have very little now as got rid of most of it when we moved to an apartment about 9yrs ago, we now live a minimalistic lifestyle…so easy! I kept only sentimental silver but it’s in a cupboard…out of sight out of mind. Our life is so easy now, no gardening so no backache, all wooden floors …no hoovering, all modern fittings making daily cleaning a doddle. When we decided to downsize we were a tad apprehensive but we love the easy life now and wouldn’t go back to our old house. I’m rambling and going off topic, sorry, just putting my thoughts in writing.
I do feel quite a lot better but still can’t flipping sleep! I wish I could sleep like my OH who manages around 8hrs every night - I’m lucky if I get five. Soon I’ll try some shuteye. I’ve been trawling ebay and Amazon, ordered some DKNY pyjamas from Amazon, they are same as a pair I have but different colour, I paid £55 for first pair (very comfortable) on sale at Amazon for £28…so a bargain I couldn’t resist! As I was living in PJ’s during chemo I bought loads of pairs, some from Primark which were very cheap and warm but I didn’t find them comfy in bed…also got some in M&S but they weren’t very warm, the DKNY ones are perfect. I really must stop trawling online shopping sites though as it’s so easy to get carried away. I’m digressing again!
How awful to have been burgled, that’s never happened to us apart from my younger daughter’s bike being stolen from the garage, I’d have felt violated had my house been burgled. It’s a big problem nowadays. A friend of ours was burgled and murdered a number of years ago…so tragic, his wife and dau were tied up, very traumatic! The Police still haven’t found the gang responsible, but they do seem to be closing in. I hope they nail them as his wife and dau deserve closure.
OK enough of my ramblings I’m going to try and sleep now.
I hope no-one turns up here tonight/morning, you all deserve to be having the sweetest of dreams.
Night night all.
Libby xxx
Libby I have the same thing he who is making slumbering noises next to me will be there till seven without a break in the breathing. I don’t know why I waken after what I call my power hour. I go to bed and go to sleep really quickly, than about an hour later I am awake…grrrr.
The burglars came at about nine thirty in the evening. I had a really rotten cold and had been in bed , my husband came home to bed at six rather than go to a Rotary meeting because he had man flu!! It was March and a heavy wind warning had been given. I woke at nine thirty for a wee ( i had had my power hour) and put on the TV. At two I heard banging and thought it was a back gate. So I woke OH up and poor chap made him investigate. He came back to bed and told me it was the conservatory door banging then rolled over and started sleeping. I thought it wa odd but because of the gale force winds thought it might have happened somehow. The next morning my husband went downstairs , thought he had left the dirty foot marks all over the house and had breakfast. Then HSBC rang to say they had a fraudulent try to get cash from my debit card at midnight in Bristol. We live way out in the country in Bucks! We looked about then and lots of antiques and pictures had gone. They knew what they wanted, antique silver etc. they also took a couple of portible apple computers. They had cased the place I think. Three months later we got an e- mail from a girl in Latvia asking for passwords for the computer she had just bought!!! In August the Herts police stopped a van for light problems and it was filled with antiques etc. do they arrested them, they wrte from eastern europe. A hard disc from one of our computers was found at their home but not anything else. Guess what…they still haven’t been locked up for human rights reasons!!! We were £18,000 short in goods. It is amazing how things you take for granted add up in value when counted en mass Luckily itnere wasn’t anything of great sentimental value and we were well insured, all barring one silver dish that hadn’t been down as named and was worth £4000. It was really big old and heavy. A bit like me.!!!
I was surprised how calm I felt. But at least I have less to polish. Every now and then I find something else that they must have taken D…m them. Christmas family photos helped with the claim because they showed what had been taken as did EBay for pricing!!! The house is like a Fort Knox now. Alarms, locks, chains and cameras.
Hello…
Unfortunately I am joining you all, well not if you have all managed to go to sleep, of course :o)
I wanted to have a full night tonigh as I was exhausted after my visit to the hospice. I still have reservations about it, I really don’t no why. I think its the worry of being apart from the kids…no one apart from me drives and I know I have lots of friends to rely on but…
Mum was very enthusiastic about it all, it is a lovely place, I admit and I’m sure it would be lovely to stay there for respite but I know I would be fretting about when I would see Ashy and Jamie. I may go and visit as they run a lymphodema clinic, so may get some help there. I can also have a bath there they said, they have a very posh spa in outpatience, so anyone coming in for the day can use it as it has all the gadgets to get you in and out too. They also have nurses that visit and stay with you at home, so perhaps thats my option too. Its back to the scary bit I first spoke of and having to face it, which I thought I had once but finding it harder this second time. I suppose I have had so much happen these last few months, I don’t want it to stop, slow down , perhaps LOL as I’m losing my spoons like they are going out of fashion.
I had a phone call from my cousin tonight. she has a few days off and wants to come down from yorkshire with her mum to see me next week. Really pleased with this news as I was worried I wouldn’t see my aunt again (mums sister) whome I love dearly. I also spent many a happy times with my cousin too when we were in our 20’s as she was a nurse in london and had lots of good parties :O)
Hope you are all bored to sleep by my ramblings…
night night
Clare xxx
Morning to anyone who,s still awake I have forgot what its like to sleep all night since i was diagnosed 8 weeks ago, I am lying listening to my oh having a lovely sleep very jealous, I feel as if i,m in limbo at the moment 3 weeks post mx and have appt to see oncologist on the 7th to plan next step. I have found your posts very informative and helpful, and also inspirational. I have appt with Gp today as my sick note runs out and am toying with the idea of asking for a mild sedative but have never tried anything like this before although i have never had Bc before either. I just want to get back to some kind of normality if thats possible, and that involves sleeping more than a couple of hours. Sorry i,m rambling so will go make a warm drink have a cuddle off the dogs and try again xx
Megs mum,
I would go to the doc and ask for a sleeping, pill, I have tried a selection and they do work, I just have other symptoms that get in the way sometimes with them , so when I am awake, i’m awake. I fiddle on the computer a bit and then try again after a cup of T.
I hope you soon get sorted, there’s nothing like listening to those who are snoring near us to put us in a bad mood for the morning…
Sleep well
Clare xxx
Megsmum
Don’t suffer in silence.
Zopiclone 3.75mg. It’s a sleeping tablet you can get from your doctor which helps to get you off to sleep and then your normal sleep pattern takes over.
I take them occasionally myself and also prescribe them to others as a nurse. Have a word. It can help to get you back into a normal rhythm.
Laurie x
Morning :o)
They are the one’s I use too
Clare xxx