Regarding hair - I was recommended Aussie conditioner (for hair that’s just not happy!!!) and John (?) Frieda serum - which makes a HUGE difference… with those, I now have soft hair again. Curly, but soft, instead of brillo paddy…
I remember when Billy Connolly hit the TV first of all - I was living in Glasgow at the time, so rolled up. My mother needed sub-titles!!! (and winced at every swear word, so he wasn’t a great success!)
Doz - not selfish; trying to make sense and sharing the grot… It is FAR more painful to watch someone we love suffering. My daughter had ME for 9 years, and I would have swapped places in an instant… refined form of torture to watch a child suffer… So, hugs and prayers and virtual wine or whatever your tipple is! It’s good to feel “heard” - even online…
to repeat what someone else has said - we need to learn to love the new us…
marmalade finished today, cause I ran out of steam yesterday, but it’s done now… supper cooking… wine calling…
Hi Jane, hubby has been a very long time fan he has still got LP’s so that’s how long! He really enjoyed it sweary words and all, it was lovely to hear him laugh so hard it’s been a long,long time since I heard that! I enjoyed watching his face it was priceless and tickets were bought by our son as birthday gift. We told him it was a tribute evening and right till we got on the coach that’s what he thought he was going to! Some of the stuff made me wince but some of it made me laugh so hard that my jaw and sides are still sore!
Regarding watching your loved one suffer I am totally in agreement with you Jane it is so awful to feel helpless in the face of something you have no control over but that wine sounds like a plan!
Still drooling at the marmalade thing but sadly have to have grotty bread as I have a wheat intolerance :(((( Though that did raise some hilarity when I was in hospital, nurse suggested I have a sandwich despite the red wristband so I explained I was intolerant so she suggested TOAST!!! Hubby just looked at me and said so that’s where I have been going wrong I should have toasted the bread! Poor nurse looked bemused I think she was on auto pilot and just went with the usual suggestions. Bless her she did go and get me some fruit which was much appreciated!
Will give the serum a go may even feel like real hair instead of wire!
Well PJ’d up and getting stuff ready for work tomorrow so take care all and as ever big hugs Em xxxxxxxxx
Cackles: It’s very strange to see our hair grow back different. After having a certain type all our life it’s very hard to accept the new! What to do with it needs a re-programming of the brain as does the make-up. Perhaps when yours has some length, the black patches might look very desirable! Many pay big money to aquire that look!
Doz: Good suggestion from Jane about work. Been thinking about you today and hope you’ve rested. Won’t be long before you see Daniel now. I can imagine how helpless you feel though about your daughter, as Jane says it’s like torture when it’s someone you love. So Big Butterly & Little Butterfly, look after yourselves.
Emmy: Really glad you both went out and enjoyed yourselves. Despite the language, Billy Connelly ir really funny.
Jane: Have heard of the Aussie range but never tried it. I’ve used the John Frieda range for years, try others and always go back to it. The serum is my alltime favourite, but even that hasn’t made my hair the same as it used to be. There’s an extra strength formula which I’ve just invested in but haven’t tried it yet.
Janice & Carolyn & all: Been mild weather here today so I’ve really appreciated all my clumps of crocus, snowdrops, tete-a-tete & miniature iris which have opened wide in the sunshine. Makes you feel lifted to see the splash of colour!!
Hugs to you all before you settle for the night
Ami xx
Hi flutterbys , well that’s me done for another week! it seems to affect me more as the week goes on I start the week O.K then as I go it’s all down hill!!?? home and collapse onto chair and slowly come round, eek what will I be like on more hours? Ah well for now I am in the beloved PJ’s and DG.
I am totally c++ping myself got my first mammo next Tuesday but my appointment with onc isn’t till 16th April? letter says I will get results then but it seems like a long time to me to quote Doz ,I will be climbing the walls and back again by then!I don’t know if I can ask for results from BCN sooner? any ideas flutterbys? I thought I would be fine with it but it has come around so fast it is really scary! I know I am a big wuss is it just me or is this a long time to have to wait?
ami the hair thing yes it does not feel like mine and at times I catch sight of myself and it is still strange, I actually now see my mother’s face staring back at me! She always had a perm but her hair was naturally quite straight like mine was and here I am without the trudge to hairdressers (mum would have loved it!)and still I hate it!
Jane have tried the serum it just disappears just goes to show how coarse my hair has become I am going to try some Vitapointe (wrong spelling prob!) but that’s what my mum used and she used to have lovely soft hair.
Janice I hope you have had the lovely weather to enjoy? it has been gorgeous here and so warm I had to take off my coat!
Jane I hope you enjoyed your cooking day ? I am going to work on a recipe for wheat free carrot cake who knows it might even taste nice! such a bind at times specially when eating out it comes down to the inevitable baked potatoes! or if it is a good place a nice salad! BORING! I think the GRED sounds like a wonderful idea!
crabbit I have remembered this time I do hope you too are enjoying the weather, I just wish I had enough energy to go tramping around in it! I will make an effort when the bluebells are out we have a wonderful woods not too far from us and it is magical when they are out and the smell is lush!
Doz lovely I do hope you are not working too hard again! I don’t get that they expect you to work sillyo shifts like nights almost into days? madness! I do hope that Vik is feeling better and her back has settled down? I also hope you are getting that eye sorted out goodness me I have rambled for Britain !! AGAIN! never mind it is lovely to have a catch up and I hope you are all fluttering gently in the sunshine ! Take care and as ever HUGE group hugs Em xxxxxx
Hi Em xx
No the back saga goes on Had to call an Ambulance for her in the end and as much as I hate to admit it I was non too happy with the way she was treated when she got to Hospital…
No such thing for her as patient dignity she was left on a trolley from 6.30am till 9.45 screaming in agony every time she got a spasm it took a good kicking off on my part to get her into a cubicle and some attention, I know they are run off their feet but to have been brought in on a blue light then left in a corridor is beyond me?? They dosed her up on Oromorph and sent her home with Diazapam and Tamadol enough for 3 days which only lastd 2 and she’s still no better I cant believe they didnt do a scan or xray knowing she’s had a discectomy 3 yrs ago??? Had to leave work early today after pleading with them as she had tried to do some gentle exercises and went into spasm again and got stuck on the floor… I’m off now till sunday so I will get something done for her we would’nt let our pets suffer like she has
I WILL get my app, with Dr soon its just everything else has just taken priority a good nights sleep for both of us would’nt go amiss… hoping tonight she will bless her then maybe I will… if I could take the last week and blow it to kingdom come I would!!
I hope your all enjoying the mild weather flutterbys and watching the garden come to life is magical… we’ll be fluttering soon girlies (one can hope) xxxxxxxxxxxxhugxxxxxxxxxxxxxx
p.s Em
There is NO WAY you should have to wait that long???
If some can get it the same day then EVERYONE should!!!
Its inhuman to have to wait after all we’ve been through and i’d not leave till they give you them!!!
You will be fine next week big hug to help you relax sweetie, if I can do it then so can you… sending some spoons to get that chin up high xxxxxxhugsxxxxx
Doz what a C…p time you and yours have been having. How is the back? I had a prolapsed disc about eight years ago. The nerve pain was unbelievable. I couldn’t move without spasm. Going to the loo was something else ,
Do try not to do physical work until that eye is sorted. Your sight is more important than anything, and if you have to rest so be it.
Emmy how lovely to see The Big Yan . Like Jane I remember my parents very Scottish “Low Church” views of his language. Even the Welly Boot song was frowned upon. Now aged eighty six my mother once so tight lipped loves him. It is amazing how people’s perspective changes over the years. I even got her a Connelly DVD at Christmas. Tears now flow with laughter watching him. Perhaps he has matured and Mum mellowed!
Night night girls. Perhaps I am a night moth rather than a flutterby …my hair would be more in keeping I suppose.
Cackles
Hi flutterbys
The list is endless of ailments at the moment but trying to prioritize them one by one i’ve finally got my app, for my results on monday, Vikki had to go back in today with her back for re-assessment of pain relief, its breaking my heart watching the poor girl suffering, and if you dont shout loud enough you dont get anywhere… so today against all my morals I SHOUTED… funny how they can manage to get you in when min’s previous they were too busy!!! I think the new me is becoming a bit too cynical
I’ve had back disc pain in the past Cackles… wear and tear from my job so yes I can totally relate to the pain its debilitating to say the least,and the loo is definately a place of anguish! my only major concern is they hav’nt done any tests? with her having had the Discectomy 3 yrs back?? oh well i’ve managed to get her in to see a physio tomorrow so fingers crossed… she’s as high as a kite with all the meds so maybe we can have a power nap soon.
My eye will get sorted i’m just waiting to hear from the hospital… then we can go sort Vikki’s abnormal smear out!!
One can hope with bated breath that this will be our penance over for the year!!!
On a much happier note Afghan Dan will be home in 18 days can’t believe how the time has flown!!
Enjoy the mild weather flutterbys and… moths we’ve all been there Cackles only these moths will turn into amazing Butterflys one day soon love and hugs to you all alwayz xxxxxxhugsxxxxx
Been a few days since I checked in. Been going to bed very early this week. Put my four year old to bed and then tend to stay upstairs lol!
Doz, no wonder you shouted. It’s one thing to be in pain yourself but when it’s a loved one and you know more could be done it’s easier to speak out isn’t it? I do hope things start to pick up soon and your eye improves!
Cackles, oh yes how perspective in comedy changes over time! My gran developed a quite rude sense of humour before she passed away. Happily my mum seems to be following suit now…sense of humour bit, not passing away!It’s the same with nudity. Children today have half naked bodies thrust in their faces constantly. They can’t believe that we were smothering giggles when we saw the very top of someones bottom in Carry On films etc.
Em, make the most of your time in PJ’s. You deserve it! Mammogram coming up too. I always thought it wouldn’t bother me but now I find myself thinking about it from time to time and I’m a good 5 months away from my first.
Ami, Cackles, Jane and Janice although today was much warmer and quite bright it’s still only just been into double figures earlier in the week. Every now and then I have the ‘anti cancer’ fantasy of ditching my job and moving South to some sun and quality outdoor time. Only problem is I’ve a few years to go yet until they let me!!
Best wishes to all of you. Always make me smile. x
Doz have they done an MRI request for her. My daughter fell down stairs a couple of years ago and had a spinal fracture that was picked up on that. She was airlifted and treated really well by the paramedics and then she got to Casualty…they sat her up although she too was in intense pain. They then sent het home that day from casualty with no investigations done and no regard for possible spinal damage. It was six weeks later the fracture was diagnosed. We really should have done a formal complaint.
I love Scotland and the north but I remember my childhood spent in high winds and driving rain. Wet Macs leaving chapped legs. Yuck. My time doing course at Christies in Manchester was an eye opener. It rained nearly every day for three months. So in the dry old Thames Valley is where I will stay.
Emmy you could ask for your results by post to the GP and go there for them. Some BCNs will give them to you but not all, you can but ask.
Night all
Cackles
Definitely need an MRI or SOMETHING for your darling daughter Doz! Let us know what the physio says… I see what you mean about prioritising what to sort out first - back/eye/smear… thank god for a few days OFF! Off? Probably not!
I will have my mammo a couple of weeks before the appt with consultant, as before I had cancer. At the moment, I’m not expecting to expect anything different (if you see what I mean)… we’re “routine” now… except nothing’s routine any more because it’s not something that only happens to others, it’s happened to us. However, I’m choosing to believe that I’m routine, because I’ve no evidence to the contrary…
I believe it’s been a gorgeous day today, only I didn’t see much of it from inside the hospital. It was lovely when I came out… Today, being St David’s day, and me being half Welsh, there were large vases of daffs in the kitchen when I got up… thoughtful…
I’m pooped… had things on for 3 consecutive evenings (after a day’s work) and not been sleeping very well, so I’m ready for my day’s annual leave tomorrow and a weekend off… forecast is lousy, but I don’t care… I can curl up with a book and stretch my wings from time to time…
night night flutterbies - take CARE of yourselves… Jane xx
Just a quick flutter in to say what a tonic you all are I love reading your posts and yes the twitch of a smile appears in all this doom and gloom…
Physio soon!! We managed a reasonable night sleep last night so it seems the tablets are finally kicking in (5days)
No they hav’nt suggested any scans etc which has me flumoxed???
I’ll see what Physio comes up with today and take it from there, when her disc ruptured he would’nt touch her and advised hopsital asap so I think that will be the order of the day if he thinks we should and we wont move till somethings done!!! Very assertive head fixed in place!!!
Bless you all and take it easy if you work or not…
Jane I know what you mean about routine… its sad as we must be just that to all the staff but so important in the greater scheme of things OURSELVES!!!
Eye’s still holding out thankgoodness and the floater if I dare say it… is a little bit paler?? and not so quick moving in my vision, It feels like an imaginary friend, there one minuite then darts off out of view??? Oh well things are finally on the move so hopefully sorted soon…
Managed a little bit of gardening yesterday in between fetching and carrying for poor Vikki and I SOOOO enjoyed it… stiff today but a good stiff ha ha!! if you know what I mean
Take care flutterbys love always xxxxxhugxxxx
Baby flutterby update…
Physio went well tho could’nt do much to start off with he confirmed its not her disc or lack of it…thankgoodness!! its muscular and will in time ease off though he’s doing a home visit on monday to work some more on her.
She’s been asleep since we got back so healing time welcome
Mummy flutterby is having a chilled afternoon and it feels soooo good!!!
Have a lovely weekend girlies and take good care xxxxhugsxxx all round xx
Emmy: Following my mammo, I had a letter after about 10 days, but mine was only good breast as I’d had mx. I’d have thought if you hadn’t heard anything before April everything is OK. They would surely contact you if not. Could someone clarify this for you? We need to know to stop us worrying, don’t we? Yes, I also look at myself in the mirror and I’m not seeing me, I’m not really like my mum but I get flashes of her now and again. Yes, I’d forgotten about Vitapointe it’s an old favourite and was always very good! Did you try your carrot cake recipe, by the way?
Doz: You both must be hugely relieved that Vicky’s pain is muscular. Glad to hear you’ve both had some rest in order to cope with everything better. When someone’s ill you can’t seem to settle for anything but light sleep as you’ve always got one ear cocked for any noise. Back pain really does make you feel sick and wobbly and wears you out in no time. Now only 17 day to see Daniel!!! He’ll do you both a power of good. Keeping fingers firmly X’d that you eye is improving. You’ll have come down to earth a little bit today probably and hopefully felt some needed calm. Been thinking about you.
Jane, Janice, Cackles & Carolyn enjoy your weekend. Thought you might like this verse. I think it applies to us Butterflies and anyone that’s come through the other side after BC. Don’t know the origin!
Hugs, Ami xx
This is the beginning of a new day.
You have been given this day to use as you will.
You can waste it or use it for good.
What you do today is important, because
you are exchanging a day of your life for it.
When tomorrow comes, this day will be gone forever.
In its place is something that you have left behind …
Let it be something good.
Good words to live by. Got feet up; dog on lap; music playing; mint choc… Was half way through a large box of Feraro Rocher but we have lost them! Nowhere to be found!
Ami and Emmy,
Early morning Girls. You have highlighted one of the most difficult things in my old job. It is really difficult for the BCN or anybody else for that matter to promise to phone with results. It is fine if the mammo is ok but if there is a problem it needs discussing at the Multi disciplinary meeting. Also many feel bad results should NOT be given over the phone or by post if possible. If they are given at an outpatient clinic they have been discussed and a plan already drawn up to give to the patient. The patient for the majority will have somebody with them. The ideal would be for same day results but that is impossible in many cases because a Consultant Radiologist imput is needed. For every positive routine mammo tbere are hundreds that are negative, so reading these films is mot seen as a priority. They have many other commitments. NHSBSP films to read and report, ultrasound lists, imaging outside Breast Care, and MRI s etc to do. I have been caught out in the past having promised to phone as soon as they come through with a couple which held bad news. OK I was able to go to the homes in the evening when they were not alone, but It is so difficult to ensure somebody else is there and in one case the lady was alone when she told me she wouldn’t be. Her husband was very upset that she was told without him.Also no result should be given unless it is in print and signed off by the film reader. Many doctors are of the opinion that they and they alone should give out results of the investigations they have requested.
Right lecture over …I personally did give out results or was alerted to bad ones so the patient had support at the OPD clinic. I think it is horrible to wait and results should be instant. They are in some places but not everywhere.
I have had a lovely day today doing Family History, something I loved doing but didn’t touch during treatment. So I must be on the road to recovery.
Jane you sound really chilled, chocolates yum yum. .
What a lovely verse to learn Ami, thank you.
I’m glad the problem is “only” muscular Doz.
Emmy I feel for you re the mammo coming up. It brings all the buried emotions especially fear out again.
Enjoy your weekends
Cackled
Hi everyone just finished reading all of your posts.chocolates sound good Jane I did that a few weeks ago and didn’t care how much weight I put on as enjoyed them.I too had my mammo 2 weeks before I saw my consultant so he gave me the results I feel as if all my checks are becoming routine now but won’t get to blase about it just in case.
Ami love the poem its true what they say live for the day as no-one knows what tomorrow might bring as we all know.Hope the arm is mending well my neighbour who broke hers is remarkable and she is in her 70s.
Doz what a dreadful time you and your daughter are having I am thinking of you both as last October your “Where did I go” post helped me immensely as I was really depressed and reading it made me realise that I wasn’t alone and since then all of the rest of you lovely ladies have been there for me and for each other.So we are here for you now hope your daughter gets better soon
.
Weather here today is rainy and cold hope we don’t get any snow.
Hope you all have had a nice weekend and hopefully managed to get plenty of rest all you working flutterbys take care love and hugs Janice xx P.S forgot to say it was O.H birthday yesterday so shared a bottle of wine and some gorgeous cake yummy xx
Hiya Flutterbys
Dreadful weekend with a further visit to A&E only to be dismissed AGAIN!!!
My work was non too sympathetic so had to bring a friend in yesterday to look after Vikki as she is on so many meds she should’nt be left alone while I had to do a 12 hr shift Zoppy’d out of my head but got through it…only to get home to manage to get Vikki comfortable and high as a kite so she’d sleep… and did… but I could’nt!
This morning the best news I could ever wish for MY DR IS BACK FROM MATERNITY LEAVE Woohoo!!! and rang at 8 to find out what was going on BLESS HER!!! She has reassessed the meds changed them and is monitoring her for 72hrs and if no improvement, is doing an urgent referal to consultant who did the Discectomy… FINALLY!!!
And even better for me (not selfish I hope) but she is also seeing me re results from xray etc this afternoon… oh my!!! what a relief
Though so disillusioned with Hospital I just dont know where they think they are coming from when they can send someone home who is clearly in absolute distress and agony high as a kite on meds looking like she has’nt slept for a month!!! AAARRGH!!!
Its good to read all the positives coming from all my precious Flutterby friends each and everyone of you are priceless and I dont know where i’d have been myself without all your fantastic input. Bless you all xxxxxxxxxxxxxxxxxxhugsxxxxxxxxxxxxxxx Doz
Ps Just received letter re… Eye 17th April, a bit long to wait but its done Slowly… just slowly all’s happening SIGH!!! xxx
Bless you Doz you must be tearing your hair out by now! I do hope having your doc back will mean you get things sorted. I so wish I had my old GP back but have a young very upbeat young man who I can’t feel relaxed with so going to try a new lady doc and we will see? I spoke to my chemo nurse who thought it was a long time to wait for results almost 5 weeks so she suggested ringing my bcn as she can give me results so hopefully it won’t be too long! Gonna take some pain killers before going so hopefully I will get through without too much of a palaver! It’s been so cold here but sunny brrghhh! Roll on summer! Take care flutterbys Em xxx
Emmy xxxxx I’ll be with you in thought sweetie, relax and try not to tense up…its easy to say but you WILL get through it ok its a giant step forward hon a year on bless ya!! We all dread it but its really not so bad and when you leave you’ll be so proud of yourself
Not only will I be there in thought but right beside you all the way… virtual hand holding (promise I wont look) massive hug and do NOT let them make you wait!!!
xxxxxxxxxxxxxxxxxxhugsxxxxxxxxxxxxxxxxxxxx
Had to call an Ambulance for her in the end and as much as I hate to admit it I was non too happy with the way she was treated when she got to Hospital…
it took a good kicking off on my part to get her into a cubicle and some attention, I know they are run off their feet but to have been brought in on a blue light then left in a corridor is beyond me?? They dosed her up on Oromorph and sent her home with Diazapam and Tamadol enough for 3 days which only lastd 2 and she’s still no better