Hi All, warm and fuzzy thoughts to all. I too wrote a long post yesterday and it disappeared into the ether. I was feeling too sorry for myself to have another go so stayed at home, on my own having a good old wallow. Doz, you do seem to be having more than your fair share of challenges at the moment - virtual hugs sent over ((())). Jmr I hope you had a peaceful and relaxing time at Maggies. I am going back to the Penny brohn Centre in Bristol in a few weeks - can’t wait, really enjoyed my first visit.
Been very teary and emotional for about 2 weeks and part of this was the impact of work and the tiredness brought on by working. When I started back to work I was told that if I was ever struggling I was just to ask for help and they would slow things down or make other adjustments. Foolish, foolish me for believing this. I have asked for help and now they are treating me as if I am not fit to do any work at all, I have to get a note from my GP to confirm that I am!!!. An HR person has just reminded me that I already had an extended phased return in a “you should be grateful” kind of way - infuriating. I was trying to take responsibility for my long-term return and not do anything that might result in more time off but now I am wishing I had just kept my mouth shut and scaled back on my hours secretly. I feel there is an enormous need to educate managers (and staff) in organisations about the impct of cancer on people and how long it takes to get over that treatment. I feel that because I look healthy and active treatment is finished that I am seen as a bit of a skiver.
In fact, I think I might give Macmillan a call and see if I can work with them to do something because I sure as h*ll would hope that I can help make improvements for those who have to follow this path in the future. Feeling fired up now and with a positive focus. Enjoy the sunshine, Helen
Thanks for the welcomes, much appreciated. Was feeling really down yesterday so it was very helpful to be able to vent and know that someone in cyberland knows where I’m coming from. Feeling a bit more positive today, must be something to do with the sunshine, although, for some reason I can’t fathom, my feet are freezing and the rest of me is soooo hot.
Jane: My youngest left home last November, which leaves me and hubby roaming around a 3 bedroom house and it’s sooo quiet so can empathise. I miss telling him to turn his music down LOL. It does get easier but I really look forward to visits.
Doz: You are such a busy lady and still find time to offer encouragement to others. Thank You.
Janice: I’m feeling a bit more human today, thanks.
Helen: Feeling like a wimp, don’t think I could have coped with working too. I was made redundant at the end of March, when this was all kicking off, so I have had to get my head around that too, but I certainly don’t have the wherewithall to be ‘looking’. I think you’ve done grand and ‘management’ should be ashamed of themselves.
Hugs to everyone and hope you have a good weekend 
Doz, i hope today has been a better day, its sunny down here. Im still feeling a bit fragile, and trying not to think too much.
I hope the seller has stuck to her word. not that I know much background to your family and Daniel.
i went to a local charity spa day yesterday and it should leave you positive after some good relaxation etc. its done in a converted oast buildings, which are lent out to christian conferences. the owners have an indoor pool for us to use. and they take 2 therapists along, yesterday was cranio sacral, quite gentle but dont really understand how it tunes into your body. then a shiatsu lady which i tried. loved it, gentle moving and working along your energy meridans.
i met 2 ladies with different cancers, who cant be treated anymore. both in pain but positive and making the best of it.
it should make me grateful to have gone through mine and i am but cant shake off this edgy feeling.
I went down to our tkmaxx and tried things on, but the pleasure isnt there like it used to be.
Emmy, good luck with your appointments, whats the reason for your bone scans (only if you are happy to write on here)
time to think about being gentle and putting clothes away.
Cant get rid of duplicate aaaahhhhhhhhh xxx now its gone.
Bobz lovely to have some one new on here, i only found this a few weeks ago and its so nice feeling im not alone, what is normal after all this,
much love to all
Anne xx
Hi Bobz. Love your picture. I too am feeling more positive today and attribute it in part to the sunshine but also to a good night of sleep. The flushes were less volcanic than normal and I am grateful for that.
My elder son has been at Uni for 3 years now and although my other son is at home there is much less noise as the normal brotherly banter is not there. Currently my OH is working away from home and here is just the 2 of us - REALLY quiet.
Anne, the spa sounds lovely and your treatments intriguing - never experienced cranial sacro “massage”? but I do love having my scalp massaged. My new hair is babysoft and I am wondering how robust it is - could it withstand a head massage? I guess there is only one way to find out, and I still have my wigs to hand though I think they would be very hot at the moment.
I am sitting in my front room with the windows open and able to hear the birds sing as I work and surf - it really is good to feel the sun and hear the birds.
Helen
Just a quick line to reassure you Anne, I have bone scans very two years as I am on Arimidex which can thin the bones so am checked to ensure I don’t need additional calcium. I just got wound up as all my apps came together so have them all in two weeks! 
one of them at a time gets me on the old worry wagon but I also have quite bad arthritis and have apps for that, I have gone from a very active working full time woman to almost an old lady who shuffles on bad days 
I do have good days and enjoy them as long as I don’t do too much otherwise I am flat out for a few days which is really frustrating!!! I have never been one to sit around but am slowly learning that life is just as good if I pace myself and if it’s a bad day then it’s not the end of the world!
Helen I am afraid I too had the talk! Ask if you need extra help, tell us if its too much then after a few weeks I got by the way we have changed your job and here is a new job description along with a new contract to sign so you only get paid for the hours you do (they were doing that anyway!) so I had a word with my union who were fab but eventually it all got too much and I had to leave or make myself ill or kill someone so guess what I did? Our lovely ami was telling me to rest as I was still on Herceptin and incredibly tired all the time so looked a total nana when I finally burst into tears in work and that’s when I decided enough was enough the support was none existant though they said all the right things they were not prepared to give me the extra time I needed to do things and I was made to feel an idiot with my chemo brain as I could ask something walk a few steps and have to ask again!! I still have a struggle with words I am famous with OH for describing the things I mean!! I said we had spiky things in the garden and yes meant nettles bless he is used to my charades now but has never made me feel as inadequate as they did in work so less money but I feel much better doing things at my own pace on my terms! Have you got a union? They are good but can’t change attitudes just make them aware of the law which is quite sad as having read that more of us will have cancer with time I think all employers need to get their acts together!
Janice how are things with Phil? Or do I mean grumpy? I am glad you are getting some me time at Maggies you so deserve something nice!! and I am sure grumpy will be back to himself before much longer and you have gained some space for yourself from this stressful time. Do you know when the op is yet? Let us know and you can have the hands back!!
Jane I hope you feel as rested as I did whilst on holiday sadly I feel like it was ages ago already but hopefully when all the rubbish is over I will feel better,specially with some more of that bright thing in the sky! I did feel for you over your daughter it feels like you are happy for her but going to miss the wonderful support she obviously has been to you, it isn’t too far and what a wonderful excuse to get away for weekends!! Hand holding for you too methinks!
Doz my flower it WILL come right for you once you get some me time which won’t be long now , Wimbledon know you are on your way?? I do hope that Dan’s legal stuff gets sorted and Vik gets to do something she really wants whatever that is and gets better for your trip!! Another hand on its way oops! Goodness Janice you are right but they are magical flutterby hands like the spoons some extra when you need them!
To all our beautiful flutterbys I have missed I hope you all have a wonderful,sunny weekend and flutter kindly,gently and sending the usual spoons,love and group hug Emmy xxxxx errrr!! Not quite the quickie I started out to do
Hi Emmy, where are you in your treatment?
I remember clearly the chemo brain - I too had to describe things when I just couldn’t find the word. I would forget things immediately and forget whole conversations completely. I finished chemo 6 months ago and am pleased to say that most of these chemo SEs have gone - I occasionally lose a word and forget things when I am tired, but in the main the old brain function has been restored. I don’t really know much about Herceptin and its SEs as I am ER+ but HER2-, so I am more familiar with Tamoxifen. Are you still on Herceptin and how does it affect you?
Helen
Ditto, helen i was er+ so on tamoxifen, thanks emmy for telling me why the bone scans are necessary.
re the head massage, it should be good for circulation and stimulation, you could always ask for them to go a bit gentle to normal, its all around neck ears etc, so not just on your scalp. i learnt it a year ago, and would love you to be nearby and i could get my stamini up and soothe all the flutterbys, one day!!!
I remember reading that some ladies managed in olive oil, or grapeseed oil when their hair first came back, and rosemary oil is good to add.
Helen how long on tam? i only started in march and the side effect has been big horrible spots, im 46 and still get some anyway but now on forehead, and i havent got a fringe to hide them.
heres to a positive weekend with gentle acceptance that we are doing the best we can, and im the worst one to take this advice!!!
and Janice just read your post,hope you are feeling okay too, hthank you for your help and extra spoons and hugs
Anne x
My goodness the flutterby fingers have certainly been busy what a lot of posts today
Em Phils op is July 11th so 6 weeks away but time to get over the chemo and maybe build up some stamina to aid his recovery as it takes about 6 hours.I think he is also suffering from chemo brain so I am having to be wife helper carer personal assistant and receptionist to mention some of the things I do Ha ha.Finding it hard to maintain sense of humour these days.
On our local news tonight they are trialling a new drug in the fight to cure cancer.It has been developed at the Sir Bobby Robson Foundation it works by getting cancer cells to attack and kill each other so if trials are successful it could be a major breakthrough.It will be able to treat all cancers.Hope its successful but no doubt some other disease will come along in its place.
I am going to try and book a massage soon as haven’t had one for a while and they do help me feel relaxed.
I agree with what you all say about people and their reactions a guy we know said he could remember this mother telling him not to talk to someone as they had cancer as if it was catching.I also remember as a young nurse not being allowed to mention the word when talking to patients and very often they weren’t told what was wrong with them and that was late 60s.How things have changed but not people as Em says Nought so Queer as Folks.
re hot flushes I am fine all day then as soon as I get into bed they start I spent even the coldest nights outside of the duvet.When I mentioned S.Es to consultant all he said was you’ve only got just under 3 years left on it so no sympathy from him.I take Letrozole and so suffer with achy joints as well.The cure seems worse than the disease but if it helps prevent it recurring then I will suffer.
Sunshine today so finished putting plants in garden which is very therapeutic as the birds keep popping down to get worms for their babies and its nice to just empty the mind for a short while.
To everyone keep those wings dry love hugs and spoons Janice xxxxxxxx
Hi bobz
I too have a very sore and hard nipple after the Rads, none of the creams have helped . My daughter has bought me a Medela contact nipple shield ( for breast feeding ) it has stopped the nipple catching on bra or clothes so it less sore its a godsend. She got it in Boots try it as I’m sure it will help you. I have had it stuck on all day under my kaftan (without a bra this time) and it has been great.
Ann W xx
hi ladies, great to read the latest posts,
doz, cant believe the headaches with the windows so much for trying!
quick update on job as i go back to school tomorrow, have been boosting myself up to go with the flow,
had a bummer with extra hours at building society, its a no go, they have just moved someone from another branch. am really upset but cant change it. have asked several friends to look out for a couple of days for me, something local. have to just plod on, i know now is not the time to face interviews. like i said before, i wish i had more of a choice but have to settle for now. no lottery win either this weekend!
so nice in weird way that a lot of the posts echo its not normal. this thing is huge and although i sailed through with minimal side effects, its okay to have the rubbishy days.
have been writing little prayers and positive things to help.’ tomorrow i approach my day in calm and quiet confidence.’
much love hugs and spoons
Anne xxxxxxx
janice hope you and phil have good rest at maggies
Thanks Ann we are going to call in on Friday after Phils scan its just so nice and peaceful and everyone is in the same boat so no need to pretend if you get my gist.Been sunny today but not been out as grandson came for a few hours e is so lush 13and quite sensible asks Phil how he is coping and just so nice.Hope everyone has had a nice weekend and that the sun has shone for you all take care love and hugs Janice xxxxx
p.s Will be ther with some confidence for you tomorrow Ann it’s not easy but you will get there I am sure xxxxx
Hi Anne, hope all goes well tomorrow. Try to pace yourself - much easier to say then do!
had a lovely weekend pottering in the house and garden. Friend gave me some rhubarb and made a delicious crumble - yum, yum. I find that baking is one of life’s pleasures for me; also made ginger biscuits to take into work tomorrow as home baking usually makes most meetings go better.
Helen
Ooooh Helen yummy Ginger biscuits… nothing like a bit of sin food for making us feel better and while your at it i,ll have some I just love GINGER in all forms my latest treat has been chunks of stem ginger in dark Chocolate OMG delicious!! And I wonder why i,m putting weight on again!!! tut tut!
Well I,m sooo jealous listening to all you have been up to, I,m on my last shift for this week and I cant say its been easy i,m so tired its been to warm to sleep and too warm to work and still the heating on the ward gets turned up??
Good news re my sister she is being discharged this week sometime, once they can get carers in to help her with washing and dressing, She had the occupational therapist do a home visit on friday and they are happy for her to go home with a little tweek here and there, it will be such a relief to know she is having daily visits and as bad as it sounds it just takes a bit of the weight of my shoulders… tho i,ll still worry about her, she lives about 15 miles away so its not always that easy to just pop in…
So many posts to catch up on and now i,ve read them I hav,nt got time to answer you all but I am sending love and hugs to everyone and a few spoons thrown in for any one who might need them… oh and yes the hand too its always there to give a virtual sqeeze Flutter gently Butterflies xxxxhugsxxx
Hi All, good news about your sister Doz for her and for you. Hope her move home goes smoothly and all the support kicks in properly.
Ginger biscuits munched and a good day had by all - if I concentrate on my what I am doing then I really like being back at work. But if I think of the politics or lack of management then I just feel anxious/angry - so just not thinking about it.
Hope your day went well Anne, hi to everyone else.
Helen
doz, glad its better news for your sister, and you are fine to be thinking a little about you, 15 miles isnt round the corner.
thank you for your good wishes re school, I did take it in my stride not all enjoyable but I dont think anyone guessed!
and just enjoyed the fact of being home by 4pm,
much fluttering to you all
anne xxx
Anne glad you coped with the day I just knew you would well done.
Helen I am going to make some ginger biscuits when my daughter comes in 2weeks glad you too coped at work.
I was so lucky I didn’t go back to work it was a struggle for a while but we get by and we have done all the hols we wanted to do so now we are just concentrating on getting Philip through his op and look forward to a future together.
Doz good news about Carol hope things work out and at least you will not be worried about her if she has carers to help her it takes pressure from you a bit.
How are our other flutterby a faring hope you are ok and hand there for you Em for all your apps
Love,hugs and spoons to all Janice xxxxxxxx
I seemed to have got through a second day, still feeling that i am pretending to some degree. sitting in staff room and not feeling a part of it, listening to conversations and not having anything to add.
Husband and daughter have just had big chat with me , first time ive cried for ages, that i am being so negative about everything. that i am repeating all the gloom on the phone and its not fair, that people dont need to hear it all. it was about how long since treatment finished and that we havent moved on. a lot of talk about my job, Helen, my daughter is feeling fed up of me being miserable. just giving off a vibe, even if i dont say anything i have tried to share all we have said on here that it has changed me, i dont want to be like this and its not deliberate. and its early days, they feel its been a few months and nothing is different.
from this i now i have to not be so negative on the phone to my family. i have told them i am unhappy in my job and as above in the staff room i dont feel a part of it.
i understand all that they have said, but its not easy. i know they are feeling fed up. i dont know how to make it better,
anne
hello All, hope you are enjoying these lovely, warm days and evenings.
Anne, I can really relate to what you are describing. I sometimes hear myself being negative and feel so upset that this too is what bc has done to me as I wasn’t like this before. Have you considered going for some counselling - what you have had to deal with would have an impact on anyone and sometimes it just helps to have a safe place where you can talk, where someone who is not judging you asks the questions you have been avoiding. I have had 4 sessions so far - some uncomfortable moments but overall, starting to move on a bit. I think it is very upsetting for us (well it has been for me) when you realise that this bl**dy disease has had a negative impact on our family, especially children whatever their age.
I went to see my GP today - to get the “fit to work” note that HR now require. So, that’s done and we discussed my volcanic night sweats;she has given me a higher dose of mirtazapine to see if that helps but has al;so urged me to raise it at my Onc appointment on Monday. Work (tasks) was really good today, lots of exciting projects for me to work on. Tired now so having a cup of decaff and another ginger biscuit (ginger is one of my five a day, right?).
Take care and be kind to yourself
Helen
Hi Anne
Just a quickie as I,m visiting again tonight, only to pop some shopping in and have a cuppa,
Just reading your post brings that dreadful hopeless feeling back and I can only add what Helen has put… Go and talk to a councillor sweetie we’ve all been there and I suspect we’ve all done it, feel so sorry for you as it’s a rotten feeling when the negatives outweigh the positives depression can come in all forms and I suspect you just need to spill it all out and put it all into perspective and what better to talk to someone who has heard it all before, to give you the direction you need… Have you thought of letting your family have a read on this site, not necessarily on this section but on ones that relate to feelings after the shock of diagnosis and treatment… It might help you if they understood just what you have been through and… Still going through xx
Love and hugs to you all and a few spoons for those in need… Flutter gently but keep on fluttering xxxxxhugsxxxx