Evening flutterbys ,
Ami you sound so brave… What a B… The trouble with plasters is they are a bit like radiotherapy…you ITCH. Just where you can’t reach…I used a knitting needle for relief when I have been in a cast ( i won’t say plastered) It hadn’t been used for wool in over forty years and then only one bootie resulted. As soon as they are about to leave the room to make me glow in the dark the end of my nose tickles…it is like Chinese torture for eight minutes.
My closest friend from my student days lives in Australia…snakes and spiders abound+++ I have decided at my age I don’t need such encounters. I shall see my days out in good old Blighty. She can come and visit me.
Doz the Letrazole side effects might be horrible but it shows it s doing its job…so bless every drip!!!
Emmy your hair sound lovely… Green, green. I have owl fluff in the shades of Cruella Deville! A badgers pelt would be an improvement.
I wandered the five hour round trip up to London and to see the girls at work today. They are all so lovely. I now know that radiotherapy and chemo are tiring!!! I have had six sessions now and am beginning to go a daity pink. Aqueous now slapped on. A return to work put on hold!’
Jane that dog is great!
Sleep well all
Cackles
Hi Cackles
Thanks so much for your encouragement. And yes, I’ve discovered that it does itch but I daren’t poke about because of the wound and also it’s sooo tender! I try to mentally rise above the itch telling it to b. off and it goes. My arm looks like it’s been dipped in Ribena. I can’t believe surgery to my wrist caused bruising to my upper arm!
Look after yourself papillon - a 5 hr round trip after what you’ve been through, and are still going through takes its toll. Because you’re used to feeling rubbish, by the time radiotherapy comes you think you feel quite well but you’re not - have just forgotten what normal is!! Don’t want to hear you’ve taken 2 steps forward and 1 step back!
Take care
Ami xx
Hi Flutterbys
Had loads of trouble with computer… a friend sent a message or so I thought and I opened it as you do… to find it blocked??? then my contacts received the same?? Yes a scam… so if anyone receives the same just change your Hotmail/mail password!I contacted Windows and its a harmless scam though very annoying.
Well first of 2 nights over and of all days the sun shone straight into my bedroom even more annoying!! So didnt sleep well…Whats new!
Glad you all had a good new year and seem in good spirits…
Hope the wrist is feeling more settled Ami xx
Just had news Daniel is coming home for a few days in March WOOHOO!!!
picking him up from Manchester airport on… Mothers Day 
what a lovely present that will be
Hope you all have a good weekend will catch up soon flutterbys xxxxhugxxxx
I had a rest over new year… then was back full time from Tuesday. Did a full day Tues/Wed… had Thursday annual leave (planning one day off a week for 3 months to use up annual leave and keep the phased return gentler)… Friday I did what I thought was right at the time… colleague really upset with me cause SHE got in to trouble… I should have done it (slightly) differently, but when you’re the one dealing with complex situations, it’s not always easy AND my brain ain’t quite what it was AND I am still beating myself up! Why am I still beating myself up??? Cause I was called out again yesterday evening (two encounters that went VERY well, but we don’t think about those, just the one that could have gone better…) and I’m tired… and on call all weekend… Has anyone seen my confidence please? Is it hiding? was it in my breast? will it come back if I call? and HOW LONG does it take to get over this wretched disease??? Sorry… 2nd mis post in succession… don’t usually do self-pity…
Jane
oh… and I’ve got toothache… anyone else had problems with teeth post chemo?
Hi Jane you are a very brave woman going back full time! I am doing a VERY phased return started with two mornings and beginning this coming week doing three as I am on Herceptin and that seems to knock me back I am exhausted! I used to do a full time job and teach four evenings a week, never bothered me! I sometimes feel so feeble but do give myself permission to be that way after all it’s been a long hard road so stop beating yourself up you have just returned and are doing well to have got this far!! As for the teeth,yep had loads of problems! My lovely dentist saved two of my teeth and told me it is common to have problems after chemo something no one thought to mention? I think you need a BIG flutterby hug and you so need to be kind to yourself one day at a time , your confidence is still there it is hiding under the rubbish you’ve been through give it time and sod others just do what you can sending you a gentle hug, take care Em xxxxxx
Evening All
Jane you sound really down which isn’t like you when you post. This D… Disease messes with our hormones, appearance,stamina plus ,physical and mental well being. Poor you. We have been battered about and now expectations of normality come too soon. My gosh doesn’t that fatigue catch you out when it has appeared to be gone and then it comes and bites you on the butt!!! A bit like Tax chemo. Give Soddit a hug. I suppose there is the expectation that you are back at work and better…but this is not a common cold we have had.
As for teeth, I broke one on the first day of chemo, so now I know my Rads timetable I can go to the dentist. They have been breaking like good uns!
Doz boy home on Mothers Day…what a fantastic thing . Get the wine in to cool and the table at Raymond Blancs booked!!!
Ami how is the arm?
JMR sounds like I have your problem.I didn’t sleep at all last night, so whoever says Radiotherapy makes you tired has got it wrong. Never mind I just played on the forums and watched old Upstairs Downstsirs and Morse DVDs . I have got so used to not sleeping well because of chemo that it will be hard to get back to reality.
Emmy I envy you your thick curly hair, the owl fluffed Cruella Deville look is not good for “”“my shaped head”“”""the problem with the blonde look for 40 yrs is the real colour was an unknown thing!!! Hey hoo.
Hug to all
Cackles
Hi to all, i finished all my treatment 2yrs ago, it has changed me from the person i used to be, i thought by now my immunity would be a lot stronger! Can anybody suggest any remedies to boost my immune system up that will not interfer with the tamoxifen. Am totally fed up with be knocked of my feet.
Hi Featherless… I take bee propolis tablets (when I remember) which are good anti-viral as well as anti-infection… bit pricey, but the bottle seems to be lasting well, and in the 3.5 months I’ve been back in a hospital (with lots of bugs around), I haven’t caught anything (so far… hesitates to say this… but saying it CANNOT give me an infection!!) I also take Echinacea if I feel sniffly or have a slight sore throat. Seems to help too. I’m on Letrazole, so I don’t know if you can take either of those on Tam…
Thanks for the supportive comments and hugs. I feel a bit better today, after a good night’s sleep (fresh lavender beside the bed to squeeze… works sometimes!) I like the thought of my confidence being under all the ***** of the last few months. Emmy, when did you finish treatment? I began my phased return, gently, end October.
Radiotherapy had no effect on my fatigue levels (or sleep!)but I think I was lucky. Just bought “Cancer Survivor’s Companion - a practical guide to dealing with the feelngs after cancer”…seems good… and, reading bits of that, I have very little to grumble about…
Great you have a date to see your boy Doz…
flutter-hugs to everyone…
I’m off to work soon…just for the morning…
Hi Featherless Flutterby
That just about sums up how your feeling I guess… bless ya!
Your amongst friends we named ourselves Butterflys (shortened to flutterbys as the real us flutters by once in a while… long story hon) Regardless to the length of time since treatment we are all still on a journey of sorts and not always a pleasant one…
After speaking with my consultant just before xmas for my first year check up the question of immunity was brought up and she told me the BEST thing to take to keep your immune system up to speck is High strength Vitamin C tablets (1000 mgs daily) rec daily dose is 1250mg so only need to take one a day.
I have been taking them now for 2 months and I work as a Nurse in a Hospital where there are often bugs around… I dont know if its the Vit C but I have managed to stay clear of the colds/chest inf etc and there have been many on the ward… on saying that i’ll probably catch one now tho not good as my lung was damaged through R/T leaving an area of fibrosis (still got plenty of healthy tissue tho I also am on Letrozole but is is safe to use with any meds…
Well done Jane on your return to work its a pretty scary time wondering how you will manage after all we’ve been through… I went back a bit too early I think (2 wks after R/T)as I did and still do struggle now and then with energy levels and just feeling different…
I’m now just putting it down to the norm for me and hopefully one day the sleep and energy will be back to a good level??? I can cope with the dip in energy as my shifts allow me 3 days a week off to catch up but the sleeping problems are a nightmare… ha ha! no pun intended.
I’ve just done 2 night shifts and slept on and off for 4 hrs yesterday today I only slept about 2 and its driving me crazy now…
I dont want to take too many Zopiclone as it leaves me feeling all fuzzed out and thats not good for my job so any non med tips would be most helpful, I’ve tried the Lavender but it just smells nice and i’ve tried sheep… but they stop jumping… OH JOY!!!
I’m off tomorrow so it’ll be another PJ day like today… no change there then
Hi Cackles I think R/T and sleep related problems are a common factor I felt really tired and fatigued about a week after the therapy had finished… which I was warned about at Oncology center tho it does’nt affect everyone the same… and sometimes we are so tired sleep just does’nt happen!
And yes what a lovely present for Mothers Day tho apart from the journey back from Manchester i’m sure he’ll be out catching up with friends most of the time I have a bit of bad news for him I wont tell him till he’s home 
his friend who’s house sitting his Apt went away over xmas/new year and forgot to feed his fish… all dead!!!16 tropical that he adored!! STUPID STUPID MAN!!! AAAARGH!!!
Well on that note flutterbys old and new I hope the weekends going well and those who are at work tomorrow have a brilliant day :)Hugs on the way xxxxhugsxxxx
Hi all! Well another day down and long one tomorrow so I thought I would drop you flutterbys a few lines!
Jane I finished chemo on 31st Dec 2009 and then had ops 1+2 in March at beginning and end of, then rads in June and having Herceptin now till April (end of) and on Arimidex so though I still think I should be all better I am not! The Herceptin makes me feel quite ucky and tired this is getting worse with time! The Arimedix has turned me into someone who is old before their time! I also found the bit of arthritis I had before chemo went away during treatment and has come back with a vengeance! Ah well I keep thinking I will be better soon whenever that is! I went back to work at the start of Oct and as I said VERY part time at 2 mornings a week now 3 mornings but I am finding it hard though I do tend like most of us here to put a ‘face on’ whilst at work so no one is any the wiser!!! I don’t think I could cope with full time! So it is a case of wait and see I don’t know what to do for the best but I think time will tell.
Cackles thank you for the nice compliment but it is still hard to come to terms with the difference both in colour and texture of my hair, I don’t want to sound ungrateful as I am glad to have hair that looks ‘normal’ , when it first came back it was a dirty sort of grey and very soft curls so after first cut it started to grow very coarse and I put a temp colour on it only to find (chemo?) it took the colour so well it stayed that colour since!!?? I know it was a dark brown originally and like you I did it blonde which it had been for about 10 years until DX so I didn’t know what colour it would be either!! Funny hubby tells me it is the original colour I had before the blonde!! Who would have thunk it?
Hi featherless welcome to the flutterby crew! I think you will find these amazing women here make you smile and are there to lift your spirits when you are down. It’s also nice to just pass the time of day with I couldn’t have asked for better!! I still think we are slowly deciding who we want to be which I think is the question we all would love the answer to! Good days,bad days we can share and it really does help!
ami pull ups forever!! it’s strange really how we adapt to change and to our condition, I too hate anything tight! I can’t believe it when I see young girls in oh so short skirts with those ankle breakers and think that used to be me! I think from some of the young girls at work they think THEY have invented it!! I remember hearing someone say if you did it the first time round then don’t do it the 2nd!! So agree couldn’t if I wanted!
I hope you are holding up jmr? It will be finished before you know it and hopefully you won’t be too tired.
It’s this Thursday for the dreaded ‘H’ so I am speaking nicely to my veins and hoping they behave!
Doz whoop! whoop! having Afgan Dan home I bet you can’t wait! Bless you it will be here so fast you will wonder why you worried!
I hope the week is kind to you all and the weather too!! Big group hugs xxxEmxxx
Afternoon flutterbys,
Well I decided today was the start of normality. Porridge for breakfast…1st day of diet but then my husband took me to an Italian for lunch so crepolini put paid to the diet today! maybe tomorrow!!!’
I was going to meet friends after Radiotherapy for a group golf lesson ( we have had them for years but get no better!) I went in early and they blasted me straight away. At each visit I am out before my appointment is due…perhaps I am the only patient. So I trotted to the hospital shop to get yet another wig. I am getting them shorter and whiter each time. When I went to pay I couldn’t find my cash card. Panic …no wig, trip home to look there, phoned husband not responding. Cancel card and now late so decided just to join them for coffee. Get to golf club decide to see if I can still swing a club so go to get balls for range …FIND card in my PURSE. D…m . So I hack a few white things badly , laugh, eat cake and guess what. I AM BACK TO NORMAL. Stupid. always losing things, no will power, and bad at golf.
The normality is different but only all of you know what I mean.
Thank you for being there …
Cackles
Hi all
Doz. Not too long now until you see Daniel, something nice to look forward too, whoopee!! Told you time would soon pass and what better present on Mothers Day? Marvellous. But oh dear, what a blow about his fish - someone’s in for it when he gets back!!
Emmy. I have quite few Indian clothes which I find lovely and comfy. The colours are so rich and vibrant, they really lift you. I’ve had so many compliments from the nurses as I always wore them when going for chemo/herceptin when I needed to let it all hang out for a few hours!!
GiJane. Jane, I don’t know how you cope with full time work. I don’t think I could at all. I’m not surprised you feel as you do, flutterby. You could really do without the mental stress. I’m finding this illness takes a long time to recover from and I’m further down the line, I think, than you? I don’t think any one of us can expect to jump back into what was before. I’ve tried hard to stop feeling guilty or beating myself up over things. I just try to my best at what I know I’m capable of in the hope that given time I’ll get there. Little by little you’ll hardly notice the improvement until one day you’ll look back and realise just how far you’ve actually come. Look after yourself flutterby - you have to - only you know how you feel.
Featherless. Welcome It seems such a setback when your immune system isn’t up to scratch. I also think Vit C, 1 gram is a good one to take. A slow release one over 24hrs to get the best effect It’s water soluble so doesn’t store in the body and any excess will be excreted. And as Jane says propolis and I also think a good honey like Manuka as it’s anti-bacterial.
Jmr. Hope you’re also getting there flutterby, getting back on track, with not too many sleepless nights which can really wear you down.
The wrist is healing a bit. Swelling going down and the Ribena effect has turned to a nice mustard shade but is still painful when I move it.
Lovely to read all your posts,
Ami xx
Hello Flutterbys… I bit of me fluttered in today, and I could cook a meal when I got home from work!!! Woop woop! Confidence put in a brief appearance today as well, which was nice. I’ve been put on antibiotics for toothache, so hopefully that will help on that front.
I was talking with a nurse today who’d also been off for a year (different reason) and she said she’d been told to “do something kind for someone else each day AND do something kind for yourself each day”… Not heard it put like that before, and it seems helpful to me, so I pass it on.
Challenging morning tomorrow, so I’m taking the afternoon off, so that I’m OK for Thursday morning’s challenge!
I finished chemo in July, and rads in Sept… back to work 6 weeks later, phased return… full time as of Jan… too fast? I really just thought I would get over this - didn’t we all? I feel a bit of a whimp trying to explain… sounds like I’m making a mountain out of a molehill…
hope you’re all OK - and thanks for being there…
love
Jane
Hi Jane
I can totally empathize with you on the return to work being a bit too early for the body and mind to be fully healed… I did the same R/T finished in Feb and I did a phased return to work at the Hospital where I am a nurse 3 weeks later… 3x5 hr shifts for 3 weeks then 4x6hr shifts for 2 weeks then back to full time after 5 weeks and it was too much too soon but I struggled through… not a martyr but I needed to think I was ok when in actual fact I was’nt and some days struggled big tome, probably made so much worse by the lack of quality sleep and the head just was’nt focused!!!
I still have off days were I could wrap up in PJs and think nothing of it then I feel like I should be doing something and sometimes it works sometimes I just think it…
As for doing kind things for ourselves and others I agree there is a lot of soul food there
Had a bit of a rotten start to my week but all’s good now so onwards and upwards flutterbys
Love and big hugs xxxxxxxxhugsxxxxxx
I know we’re about the same time scale, Jane, and I don’t know how you all manage to return to work so early. I’m retired thank goodness, but finished chemo and radio at the end of July and still feel really tired most days. My first mammo was today and appt with oncologist who says to take it easy since fatigue can last until 18 months post diagnosis, although it’s important to do some exercise.
In my case linedancing lol!I’m desperate to get up and go and a bit fed up with myself.
Look after yourselves
Margaret x x x
Away to practice my linedancing
Hi Jane how amazing are you??!!! Told you the confidence is hiding it made me smile to think of you rummaging around the rubbish to find it but bless you there it is don’t let it escape back into hiding for too long spurts are good you ,then you won’t get too much of a shock when it all appears at once! I really could not have done with going back full time I still struggle have done 1 full day and 2 half days this week and am pooped! I came home today and had a sleep for an hour it was such a relief to think I didn’t have to do any more! On the other hand have the ‘H’ tomorrow which leaves me feeling really grot for longer each time and my poor tummy really doesn’t like it! But hey ho another one down then 5 to go!! I like that idea doing something nice for someone and yourself it sort of negates the feeling of selfishness we get when we do something for ourselves? I think it is a hangover from when my children were small and money so tight that to get something for myself felt wrong when they needed so much! or I am just completely daft! I so hope you are feeling a bit better and am so glad we are all here for each other it has been the ‘silver lining’ that has come out of this horrible disease!
ami I hope you are getting there? Again I love the idea of wearing Indian clothes so much room in those I think the colours are so pretty and yes I can see it being an uplifting thing, I tend to say I like the pull up thing so I can let my fat breathe!! I don’t like to be uncomfortable I have only just got to a stage where I am beginning to recognise my own body be it different I have to own up to owning it!!!
Hi Margaret I think line dancing sounds like fun and what a way to get your energy levels back! fantastic! I agree with your onc my own says the same thing and I do bemoan my lost energy along with who I used to be but have been working on the new me! I suppose it isn’t everyone who gets the chance to redesign themselves! Not of our choosing but I have to take the positives and run with them!
Doz my flower! So glad things settled for you now you can look forward to Dan coming home! I was just thinking between everyone we are a wonderful crazy mix and my goodness doesn’t it work???
jmr I so hope the sleep thing is settling there is nothing so wearing I think most of us can cope with it from time to time but sleep does help with getting through so I am keeping my fingers crossed for you!
Featherless you too I hope you are feeling less tired? I know it’s a pig when you go through a phase of catching everything under the
sun and that is wearing as well!I think you may have gathered I HAD a doze and am awake now honest!
Cackles so sorry this list is getting quite long! Bless you I like that you lose things (like me!) I keep putting things in a safe place so safe I forget where it is! As for memory yup! non existent! which bless the girls in work are working around! I hope you are coping with your Rads and don’t have too many forgetful days! Well I will check in over the next few days but will be PJ’d for a few days so take care all flutterbys big hugs Em xxxxx
Thanks for the encouragement girls. I took the funeral of an 8-day old baby today - (another one tomorrow…) and after the funeral I went to a meeting about Clinical Ethics… I had a coffee and a chat with the Chair (who is a consultant psychiatrist) and when I said I was disappointed at how long it took me to recover from the emotional whammy of what I deal with, he smiled and said “perhaps, while you were off, you have become more normal”…!!! I was telling him about a meeting I was dreading, and he simply said “you don’t have to go”… what? really? Yes, I do. No, you have a choice. You are dealing with heavy things, you are on call more than any other healthcare professional, and so if there’s something you don’t want to do - don’t do it. Now THAT is revolution in MY head!!! I WILL do it, because my colleagues are right behind me and re-scheduling their lives to be there supporting, so I have to go. However, I do not have to allow myself to be bullied, if that starts. I can leave. More revolution. Useful conversation… I do hope actually saying what I have done doesn’t push any painful buttons for people… I just wanted to give a context…
I took the afternon off… had a zizz and then a cup of tea with good friends - one of whom I hardly ever see… so that was me doing something kind for me today. What about you guys? Have you been kind to yourselves today?
love to you all flutterbys
Jane
Jane what a day for you! And tomorrow, sending you much love and a BIG hug to see you through I am sure all the flutterbys are too take care Em xxxxx
P.s made drinks for everyone in work and had a nod for ME! xxxx
Hi Flutterbys
Just a quickie in between what seems like an endless run of shifts
and am I tired… Oh yes!! Zopiclone at the ready!!!
Its becoming quite heavy on the ward with some really young patients… well young compared to me!! 3 under 35 and so sad… Being neuro we have lots of different outcomes and scenario’s the best obviously being the ones we can send home with a good quality of life but at the moment were a long way from that so onwards and upwards and fingers crossed the energy holds out till next week… Annual leave woo hoo!!!
I hope your all feeling well and send a big hug… Jane I wish I had a choice… no such luck!!! xx
This ones for Em for tomorrow ((HUG))and sending H a message… be gentle with my buddy xxxxxxxxxxxxxxxhugsxxxxxxxxxxxxx