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I am in a really surreal place.........

icy_k
Member

Re: I am in a really surreal place.........

I have been frantically trying to get back onto the forums. Still don't think I've got them back as I'd like but so glad I've found this thread again. Is there an option to save it to my favourites as before?
Clare, as I've said before, I'm a lurker that has followed from your first posts. Sorry to hear you're not having such a great time at the moment but I also wanted to say how inspirational you are to the rest of us. I don't know if I found myself in the same situation as yourself if I'd be so positive and humorous as you have been throughout these past months.
Sending you lots of hugs your way
Karen xx

moser
Member

Re: I am in a really surreal place.........

hello, Clare, so sorry you are feeling crappy, hope you are starting to feel better now. agree with Jane, the people who were cross will get over it. I decided a long while ago that when I need to visit a doctor or a hospital it is always an emergency cos i only go if have to, so just go for it - selfish perhaps but you get sooo fed up of those places sometimes. Anyway, hope you get a good night and that tomorrow is a good day, take care, love Mo. xx

GIJaneH
Member

Re: I am in a really surreal place.........

Aw Clare - have a hug (gentle one)... stuff the people cross that you got seen, they have no idea what you're dealing with! Hope you got some decent rest, and the antibiotics work AND that there's a bed for you tomorrow! Ditto ST... who's a wise old owl... love Lurkio Jane

scottishlass
Member

Re: I am in a really surreal place.........

Hi Clare (sorry I keep spelling it with an I in it but it is the middle name of my ED!) Just hoping that a bed becomes free for you tomorrow so that you can get sorted out. Good for you for jumping thr queue....you wern't really, but I can imagine the looks you would get! Have a good night's sleep and I sincerely hope a bed is there for you. Love Val

potmaid
Member

Re: I am in a really surreal place.........

Thank you all so much for putting up with me whinging, things were just catching up on me, poor mum,as usual got the brunt of it, as like many of my loved ones just want to take it all awy for me.
congrats on being a grannie, once again raga, I bet its hard to keep away lol
I had an improving day today although no beds free as my next trick is to have the fluid drained under ultrasound guidence so I need a bed for at least half a day to rest after and the hospital is chocca block, so I have to ring every day to check. I'm such a silly moo, on leaving last night, they said to come and pick up my antibiotics today as they wouldn't be made up till then, so luckily had to go there anywhere. But I neary caused ww1 and 2 as i went and sat down for the canula to be taken out, got sorted straight away and the people next to me were up in arms as they had been waiting to see a doctor for 5 hours, so I just hopped it quick!!!!
Then went to surgery to pick up yet more drugs, then home to read and look at all the family tree documents and photos, totally absorbing.......
Hope you all didn't have rain all day. I see ours forcast for the next 3 days to be rain and wind whoopeeeeeeeeee :o(
Luv Clare xxx

slamer
Member

Re: I am in a really surreal place.........

I'm with 'supertrouper' on her comments to you Clare. I've been an 'extra' since your first post & you've given so much support to us all & you have a lovely way of putting your thoughts & wishes forward. Even though I'm an 'extra' I feel like I'm with all of your 'girls' when you are chatting & meeting up. I'm 'running' alongside CM with my bc, maybe a day or two in it, but sounds very similar, only difference being I'm in sunny spain..Just wanted to say that did you know that when you manage to find your fav discussion just add it to your 'Favourites' on your pc. Hopefully the techies will get it all sorted, it is still a very frustrating site, but please, I hope we can all stay with it. My best wishes to you Clare & friends Sue x

ragamuffin
Member

Re: I am in a really surreal place.........

Hi Clare
Wanted to send you love and hugs and hope things improve soon.
Vercors - well done, all that walking - makes me feel tired to think of it.
CM hope the new job is still good and the gallivanting continues!
Like the others say I'm finding it a bit tricky to find my way round the new site but have eventually made it. I seem to have more trouble with my iPad than my PC - is that a common problem?
Tired ++ at present as new grand-daughter arrived on Sunday so lots of Grandmothering over the last 5 days- having a day off today!
Love to all the Claredroppers and Extras xx

dinnp
Member

Re: I am in a really surreal place.........

i really do not know what you said?
supertrouper
Member

Re: I am in a really surreal place.........

Managed to get onto the forum for the first time in ages! I have lurked as an "extra" for quite a while on here and don't know if this message will manage to get posted. Just wanted to say Clare that I have followed this post from day one and admire your determination and courage. If I was in your position I don't know how I would deal with it but hope that I could do it with the dignity and humour that comes across with every post you make. If I was Australian I would say GOOD ON YOU SHEILA but as I am not I will just say "good for you"

scottishlass
Member

Re: I am in a really surreal place.........

Hi Claire, Sorry things are a bit difficult for you right now but hopefully the meds wil do their job and have you in your feet again before too long. Just to say we are thinking about you and sending a huge hug (( )).
Hi katytc, hope you had a grat holiday. Looking forward to hearing about the good bits once you have a time to recover.
I had to nip of to bed ofr a couple of hours late this afternoon so am up catching up on things like missed programmes on the iplayer and avoiding emptying the dishwasher! Will be glad when BCC finally decide to give us an update. Poor show BCC for no more news and feeling as if we have been left in the lurch. But at least some of us have managed to get on the site. I have heard that many have given up trying. Goodnight, Val

katytc
Member

Re: I am in a really surreal place.........

Hi Clare, big huggles to you, hope things pick up real soon, I have just come back from my holidays and have no idea what I'm doing!!! Hopefully it will get easier and I can find posts threads etc am sitting on the "dopey" bench in BENCHLAND, think thats def appropriate!!
So just wanted to say hello to you, all the drops and extras, hopefully I will be able to find everyone soon!! xx

potmaid
Member

Re: I am in a really surreal place.........

Hi there,
No more smily facws for me for a while, so fed up...........Just done another 7 days IV antibiotics and the leg is going down but the other leg has turned bright red, but not an infection, they are just stumped.......so I'm going to do oral antibiotics instead for a while to fully clear the infection. I am also going abit loopy, forgetting things and I even went to the xray department ( where I have an appointment tomorrow ) which is a worry, mayb I have upped the morphine too quickly, I dunno.
The appointment tomorrow isn't set in stone. I have to ring the bed manager in the morning to see if there are any beds. The chances of that aparently, according to the consultantant I saw today is minimal................ But I was supposed to have a scan to locate the fluid which would make my life better as could then breath when I get dressed and bend down to do any task. I am now having oxegen to get dressed it has got so bad. So my living life as though it was my last is slowly becomming more difficult.
The one good thing I did today which really cheered me up was a visit to Kingham ( for all you oxford ladies ) so beautiful the gardens but its artweek too and they have such lovely sculptures as a bonus. Open from 12-6pm weekdays and from 11am at weekends. Its called Kingham Lodge. Such an enjoyable morning. Cheered me up, no end then followed by a 4-1/2 hrs wait in overflow a & e.
Moan over, very tired so will leave you and go off to bed.
Sleep well
Clare xxx

Lavenderlassie
Member

Re: I am in a really surreal place.........

Hi Clare, one of the Extras struggling through the new site to say, I hope they sort out this infection soon, it sounds as if you are confusing them otherwise by being so well. I couldn't make out what all those smilies were saying, it looked as if they were having their own little party!
Post as and when you feel like it, you have a devoted lot of Claredroppers and Extras, but we all understand if you want some time off being inspirational winky smiley whatsit
Love from Lavender
xx

RevCat
Member

Re: I am in a really surreal place.........

Sending you another hug Clare. So frustrating that after the good news of last week.
Take care.
vercors
Member

Re: I am in a really surreal place.........

Clare, sending you a big hug. If you need anything, let me know, I can drop by.
Twinky, How are you doing? Are you on your own this week? I will be driving back from Cambridge via Northamptonshire on Thursday, so if you need anything as well, give me shout.
Take care everyone. A bit of sunshine would do us all the world of good.

Twinky68
Member

Re: I am in a really surreal place.........

Oh Clare. How frustrating for you after all that tripping off to the hospital. Wonder what they will try you with next? Sending you a massive big hug x

Twinky

potmaid
Member

Re: I am in a really surreal place.........

Had a crappy weekend.
I have had a weekend spent hanging around hospital. The infection seems to be not much change, it is recieding but not very rapidly. so its my 7th day tommorrow.The doctor is reveiwing it so mayb not goimg 2 give me any more......who knows grrrrrrrrrrrr.............we shall see 🐵
Another day another dollar. hope you all have a great day
Clare xxx

RevCat
Member

Re: I am in a really surreal place.........

Yeay Clare that's brilliant news. I am so pleased for you.
Congrats Vercors on more miles under your belt.
Good to catch up after a few days away and a wobbly forum.
Crabbit
Member

Re: I am in a really surreal place.........

Hello lovely ladies, so happy to read your ONC report Clare. You go girl!
All quiet here. Lucky enough to be off today too. Spent this morning cleaning son's bedroom and now just chilling!
Think a little self medication is in order now. Not really the weather for it (rainy and cold here) but will crack open a little chardonnay just because I can!
Looking forward to a 3 day week at work and then next week I am off for a residential outdoor activities stay with my class. Cannot blooming wait!
By lovelies. xx

libsue
Member

Re: I am in a really surreal place.........

Fabulous news Clare, I'm so pleased for you.
Take care, and I hope tomorrow is good for you.
x

vercors
Member

Re: I am in a really surreal place.........

Clare, I hope the anti biotics do what they are supposed to do.

The site is indeed a bit tough to get used to. Ho well, it will get better.
Did some more walking with my niece today. We reached Windsor. I was going to go back tomorrow but realised that I need to give my body some rest. Inwishnthe weather was getting warmer, I really need some warm sunshine on my body.
Take care everyone.

moser
Member

Re: I am in a really surreal place.........

Hello again Clare and all, hope you are all enjoying your day, mine is with son and his girlfriend and baby, who are staying with me this weekend. Grand-daughter is a joy I never thought I'd see, she is a star (16 months)! However, it is also nice when normal service is resumed too! Have a lovely day today and tomtomorrow all! (please rxcuse strange spellings, my blackberry can't seem to manage this website and keeps inserting strange repetitions which I can't undo). XX

nicky08
Community Champion

Re: I am in a really surreal place.........

Hi Clare
What great news , how things have changed - all for the good with you.
Struggling with the new site so just a very quick posting from me. Hope all the Droppers have a lovely Bank Holiday, even if it is freeeezing.
Nicky x

potmaid
Member

Re: I am in a really surreal place.........

Hi Moser
It took me a while to register, then it said I wasn'r authorised to be in the secoondary section, a few minutes going back and forth then it was ok.
I've got to give it too the guys though, there must have been millions of mbites to copy and re juggle and I think when we have got used to it after a few moaning mini's have their say LOL it shoul work well.
No plans really for today apart from an hour at the hospital for antibiotics and maybe a visit to my friend Tinas for coffee, thats it then really. Any on else doing anything riverting????
Have a lovely dat, seems to be almost bright here lol
Clare xxx



moser
Member

Re: I am in a really surreal place.........

really fab news. so pleased for you. am reallystruggling to findmy way round this site, glad I have found you again. Lots and lots of love, Mo x

scottishlass
Member

Re: I am in a really surreal place.........

Pleased with your news Clare. Hope you get used to the morphine again. I take it all the time and eventually that first effect wears off. I do not notice any side effects any more at all....except the few times I have forgotton ot take it and THEN I begin to feel spaced out. I know this feeling now so when it happens I just go to my pill dispencer to see if I have or haven't taken it. But as I am on chemo tablets morning and night I haven't missed a dose at all recently. But I do have to have a proper routine or I can easily forget. Hope you have a restful Sunday tomorrow, much love Val

Twinky68
Member

Re: I am in a really surreal place.........

Found you all ....woohoo....I missed you...big hugs to all....and a celebratory jig over Clare's news! Go girl.....

Loved the visit to Cardiff....was there for the only sunny afternoon this week & had a boat trip around the bay. Good destination for shopping too. Main shopping centre has all the big names in shops plus big fashion names too then outside there are several arcades with little unusual shops in too do plenty to explore. Imagine the city is very busy in season. Hope to go back when treatment is over as i was too tired to take advantage of all the shops to explore.

Hope everyone is ok & we soon get used to this new format!

Twinky x x

JulieD
Community Champion

Re: I am in a really surreal place.........

So glad to be able to get back on site and to be greeted by such absolutely stunning and fantastic news Clare! You must be delighted but probably a bit confused too!?Anyway congratulations and keep up the good work!!
Love to all xx
vercors
Member

Re: I am in a really surreal place.........

Brilliant news Clare.
We were all wondering about weaning ourselves off the site, well it was more cold turkey rahter than just a gentle weaning off.
Maybe it is a good thing, this has kept me off the computer for a few nights. I picked up cross stitching instead.
Have a great chilly week end.

GIJaneH
Member

Re: I am in a really surreal place.........

Absolutely Fan *** Tastic Clare!!!! Woo hoo!

good to have some good news in the midst of tohe site-chaos! SO pleased for you....
Jane xx

potmaid
Member

Re: I am in a really surreal place.........

The oncologist said I was stable in everything apart from 1 liver marker

potmaid
Member

Re: I am in a really surreal place.........

Hi all,
I saw the doctor and had a great results as I have gone straight to hospital and written up for at least 5 days of 12 hourly antibiotics, which means I don't have to stay, just a bit of waiting around........... Whats new there????
Off for a reveiw with the doctor at the hospital as I have done 3 already but no change really as yet!
I am still so very tired, XOH was very worried about me as I was really odd and drifting in and out of sleep. I knew that but I have had to reintroduce my body to morphine again, so there was good reason, he just never asked and was going to call mum to get her over here so she could stay with me overnight. Luckily he didn't as I knew what was happening to me and why and I would have been v cross!
Glad you manage the walk verors with your family. A friends parents have a house on the river with moring too, so I often went out in a canoe.
I hope you are all well and have lots to tell.
with luv
Clare xxx

vercors
Member

Re: I am in a really surreal place.........

Rain, rain, rain go away come back another day.
I have had enough of the wettest drought in history.

Just had a lovely four days with one of my brothers and his wife.
We still manage to walk (Shepperton - Staines) on Saturday. It was spitting but not bucketing.
Still I had to behave; no drink for me as I am on antibiotics for a urine infection. Both my brother and I are keen whisky drinkers.
On Thursday one of my nieces is coming for a few days to spend time with my daughter. The following week end is one my sisters and brother in law and then the Jubilee bank holiday, another sister.
My poor hubby will have enough of the Vercors family invasion.
Those are the risks when you marry into a family of 8 very close kids.

@Cackles, Look out for me as you are going up and down the Thames in your boat, and wave while I am walking up stream.
Next week end, weather permitting, I will be reaching Windsor.

@Clare, there are indeed some beautiful houses on the way. A few are for sales, if it takes your fancy. The trees are in full bloom, it is just gorgeous.

@CM, I thought I was bad, as I can't keep still, but you are something else! You enjoy yourself girl. I hope the commute does not get the better out of you.

Extras and all, I hope you are keeping well.
Take care.

GIJaneH
Member

Re: I am in a really surreal place.........

Let us know how you get on Clare.... hugs <<<< >>>>>> Jane

potmaid
Member

Re: I am in a really surreal place.........

LOL ur so BAD!!!!!!!!!!!!!!!!

ChoccieMuffin
Member

Re: I am in a really surreal place.........

Oh, I didn't say I didn't gallivant, there was a fair amount of gallivanting going on, just that I'm feeling a bit tired doing it! Good to read there seems to be a little bit of improvement with your leg. onwards and upwards and here's to a bit of dry weather for a day or so.

CM
x

potmaid
Member

Re: I am in a really surreal place.........

Thank you ladies for your kind words and thoughts.

Maybe I am just an old misery at the moment, or then as there seemed to be no progress on my leg infection untill yesterday. Much of the redness has gone, just left with the original patch although may need to keep off the massage and have another week of antibiotics. I am going to reqest some new blood too, I am constantly boarderline anemic, which I think is contributing to my tiredness.

I hope you found a good berth for your boat Cackles.....hasn't been a nice experience, I guess in this weather.

Mary grace, thanks for your post, I agree that is what I tended to think, she is a very difficult to read lady but with a kind heart, I have known her 10 years. I am actually seeing her on tuesday so am going to ask her to spell it out for me more clearly.

CM you don't half soldier on my dear, I do admire you. its a shame you are so exhausted at the weekend but at least with the weather you had an excuse not to go galivanting, which I guess did you lots of good. Getting back into the swing of things again must be hard, especially a new job, doubly so.

I'll wish you all a good nights rest

With love
Clare xxx

ChoccieMuffin
Member

Re: I am in a really surreal place.........

I agree with the general sentiment, and didn't want this lovely thread to drop too far down - Clare, you are in my thoughts often though it'll be a bit more tricky to come and see you now I've found a full-time job. I didn't even come on the forums over the weekend as I was just too knackered!

I think we could all do with a few days of NO rain, that would make us feel a bit more cheerful. This soggy weather is making everyone around here feel a bit down, and knowing how you like your garden it must be a bit of a drag not being able to get out and about because of the weather.

Hope this week has some nice treats in store for you.

CM
x

Cackles
Member

Re: I am in a really surreal place.........

Morning Clare ,I haven't becomes lurker. I haven't posted because we were moving the boat from the canals where there are lock closures because of water shortages, to a very full Thames. On the river there too were closures but they has too much of the wet stuff.....as did I!!!!
I read what others are saying and concurr For you this has become an important part of your thoughts.....those that keep the hours passing in social banter with others --- others that are so glad to have you in their lives, and have many thought which are similar to yours at times.
It is hard sometimes not to switch on the computer and see if anybody is out there.. For me it helped me through chemo and I met the lovely ladies last Saturday . All we did was laugh and enjoy the fellow feeling..
Coming to see you was another highlight.
If you want to cut down please do. It is your thread for YOUR thoughts. We just join in and are enriched by them
Biggest huggle
Cackles

Crabbit
Member

Re: I am in a really surreal place.........

Just wanting to send you a huge hug Clare,please don't start piling guilt on yourself now. You have been wonderful, honest and uplifting throughout this journey and have dealt with all the crap you have had thrown your way with humour and grace.

Time to get a bit selfish I think and do what makes you feel satisfied.

Take care xx

GIJaneH
Member

Re: I am in a really surreal place.........

Another Lurkio (extra) here... Mary Grace - encouraging words....

Clare - you are being very hard on yourself... from the outside looking in, it seems that you are living each day as if it were your last - and that's brilliant! In doing that, you are planning, caring, communicating hope, concerned for others, resting, sharing... having a laugh and generally BEING a blessing! I can't pretend to know how you handle what's always in your head, but my GUESS is that if you keep doing what you are doing, and focus on TODAY, it'll shrink a little... Personally, I just want to say what a privilege it is to virtually walk with you.... been humbled, inspired and encouraged and amazed in equal measure...
love Jane

Mary_grace
Member

Re: I am in a really surreal place.........

Hi Clare, Claredrops and all extras. I am an extra, I only dip in and out of the site nowadays as I am in the lucky position of being currently NED but I call into to see how everyone is doing every now and again as it is hard to wean yourself a way from a set of wonderful ladies who have followed along the thorn-filled path we have all been trying to navigate this last few years.

Clare, I don't post much because I don't want to appear like I understand how it feels to be in a position that I haven't experienced and I just hope, as and when I am there, that I walk that way with as much grace, kindness and humour and concern for others as you do.

I thought of posting something a while back when you said the last comment your onc made to you recently just before Aisling's birthday. You said:

"I had a call from Elaine, my oncologist yesterday re my scan. My liver has got a bit smaller, so no longer growing at such a rapid pace. I do have fluid round my lungs and round my tummy but she says that it's not much to warrent going down the rout of draining it as it will come back anyway, so I think I'll just have to resign myself look like i'm having triplets!!!!! her leaving comment was that 'didn't we have a family birthday soon?' I said yes, Aisling on Saturday and then she said its your one after that and then said goodbye LOL wasn't sure what to make of that!!"

When I read that, how I interpreted it was as follows. I didn't say so at the time because I didn't want to seem like I was holding out false hope or commenting on something which wasn't my place but as you now seem to be struggling to look to a future because of what the onc had previously said before Christmas, maybe I should throw it into the pot. I hope I am not overstepping the mark, but this is what I would read:

We all know secondary bc can't be cured but it can be controlled. Before Christmas, whatever treatment they were using on you was not controlling it, you had symptoms which were dangerous to you therefore they felt that they had to warn you that if this continued you may not have long. As we have seen, a number of brave and wonderful ladies on here have lost their fight with secondary bc recently and have done so very quickly. SO horrible and so sad, but it can happen. They were trying to prepare you and you took this is the best way and spread love and support for everyone around you and made living for the day an art form.

Now it would appear, whether through whatever combination of treatment you currently have, or your own fantastic attitude or prayer or the love that is willing you on, that your condition has stabilised from where it was.

I'm not an oncologist, but I AM a statistician and I do forecasting. I think they are saying that they have revised their estimate based on this new information and they now think you have responded so well you may well have up to another year. 16 months on from their previous estimate.

And you know what, as you have made such amazing progress from where you were, who is to say you aren't looking at much more than that. I hope, pray and will anything and anyone who can influence this that this is indeed the case and that you have several, many, happy years ahead of you, but at least they seem to me to be saying, phew, immediate crisis over, we are telling you that you should make plans to enjoy this year.

Going on holiday is wonderful. Our wonderful Gingerbud was off to Disney, living every moment and no, tragically that last trip didn't ever happen, but she was so right to be living and hoping and planning fun and love with her family. When my time comes, I so hope that I am doing just that right up until the end.

I really hope this doesn't seem like I am overstepping the mark. None of us can know. No one can make promises or say with certainty because there are so many unknowns, how each individual will respond to treatment, if and when it might stop working, whether each successive treatment works as well or better. But for now, you have got through the pre Christmas crisis and we are all wishing you a fantastic and wonderful time ahead. Long may it last for you

Much love to you and all the other wonderful ladies on here xx

Sascha
Member

Re: I am in a really surreal place.........

Hi Clare - I am fairly new here so don´t know you that well, BUT I think we all need to just remind ourselves that oncologists are simply fellow humans who have done long training courses we have not, looking at health in a fairly one dimensional way.

They are not God, most of them are not female (so do not understand the day to day reality of female hormones, or will-power etc), and you have already proved him wrong........I don´t think it is ever possible to remove the lurking doubt but for 117 days you have proved this man wrong......

potmaid
Member

Re: I am in a really surreal place.........

OOOOOOOOOOOOHHHHHHHHHH I do hate antibiotics :o(

Thank you all for your kind wishes, much appriciated, as you know. I think I'll post 'as and when', Like Rozvi said I'm not sure I would be able to stay away, even from lurking LOL

I have been laid up and feeling sickly for a few days now, due to the high dose of antibiotics. I haddn't put it down to them before I had got a repeat presription from the doc on Tuesday. But instead of just feeling sick I have actually been sick, many times and feel so grotty.
Today I have been on antisickness tabs too which has helped enormously. Although I have also just stopped with the morphine as I have gradually been taking less and less, very slowly and now have horrid aches and pains, which maybe the cause or maybe just laying around 24/7 has caused that...........Grrrrrrr so frustrating!!!!

This is why we need each other so much, not sure many others would understand either the pains or the frustration LOL

I have tried so very hard to live like that Katy, enjoying each day to the fullest but how do you disperse whats always in the back of mind? Thats the bit I find difficult to do. I have told myself to plan more, so have planned a trip for the kids at the end of May. Quite a reasonably large investment for someone who got their last pay check from work last month LOL

I will try and go off to sleep again.........

Do take care ladies, Love you all very much

Clare xxx

JulieD
Community Champion

Re: I am in a really surreal place.........

rozvi! Good to see you! I remember you from the feeling low thread and had been wondering how you were getting on, so nice to see you here!
Clare, hope ABs doing the job now and you are more comfortable and massage can resume soon.
CM, you must be cream crackered! Hope you enjoy the job though.
Twinky hope SE's were better this round.Rev, think South East has morped into Scotland it's ben so wet!!
Hope all the claredrops and extras are doing ok xx

rozvi
Member

Re: I am in a really surreal place.........

Hi Clair and all the other incredible ladies on this thread, yes I am a Extra and have been from the very begining, not quite sure why I havent posted on this thread before, it is so insperational to all whow read it, and Clair you must do what ever makes you feel good. I used to post on the Feeling Low thread but stopped after a while as I got to a point that I was logging in every day and wasnt sure if it was doing me any good or not, but as you can see I still cant keep away altogether.
Love to all you lovely girls. xxxx

nicky08
Community Champion

Re: I am in a really surreal place.........

Hi Donna
My girls chose a very flowing style, all swirls and loops, like old script - not block capitals or ordinary text LOL so they do look OK and not obvious at all. Just something they wanted to do and it's a good motto to have in life. if there's one remotely positive thing to come out of both my diagnoses is to have no regrets, live each day to the full, enjoy all the small things in life and don't sweat the small stuff - it ain't worth it. Pretty much the same as RevCat and katytc said earlier.
Nicky x

donnad
Member

Re: I am in a really surreal place.........

Hi all,
A brief visit from an extra to add my own 'Here here' to recent postings. I'm a secondary girl thinking of returning to work soon and hoping to do as advised and live for the here and now. Having always been against tattoos, a discreet Carpe Diem sounds fab and am now thinking of toddling off to the naughty bench to mull that one over hmmmmm - maybe - can't believe I'm even thinking of that! Imagine the docs' faces when you go for a check up. Upper arm ladies, nothing naughty!
Heres to the here and now everyone!
Clare thank you sooooo much for starting this thread, its such a tonic.
I really hope you realise how appreciated and loved you are and please do whatever you think feels right for you and yours.
Big hugs all round
Donna

katytc
Member

Re: I am in a really surreal place.........

Clare, always remember everything is about what you want to do, it has been a privilege to be with you.
I see a pain psychologist and at the moment, am having to come to terms with not the past, not the future but what happens today.
I find this difficult as having hope for the future is a great aid, but I know he is right.
Enjoy each day to the fullest, whether it be a tiny thing that gives you joy or a huge thing!
Do what you want and not what others expect of you or what you think you should expect from yourself and never feel guilty for putting yourself first,(how you do that when you have kids, is another story) take care xx

nicky08
Community Champion

Re: I am in a really surreal place.........

Hi
Revcat, it is Carpe Diem, seize the day. This has been my motto since being diagnosed with secondaries 4 years ago, not knowing how long I'd be here for - like some of the other secondaries ladies who have already posted. I truly believed I'd had my last Christmas in 2008, although had no real reasons to think that as I responded well to chemo. However I do know that Clare must be even more anxious about what the future holds given her very poor diagnosis back in December. It is difficult to let go of that feeling and to start feeling hope and it has taken me a long time to do that as I don't want to take for granted what I see as these 'extra' 4 years I've had. If I didn't have secs I wouldn't even be thinking they were extra! My advice I would try to take each day as it comes, plan some treats, even a holiday now your results are coming back so good, but don't plan anything that you would be so disappointed about if your health let you down, even slightly, at the last minute. It's what I've been doing LOL. My onc always asks me 'do I think of BC' and I usually say 'yes, because I come on the forum each day!' to which he raises his eyes 😉 I did say last time, 2 weeks ago, that BC is part of my life but doesn't rule it, I come on here to help and connect with other similar ladies as I have virtually no contact with BC in the 'real' world. Clare, you should come on as little or as often as you want, and you don't need our permission to do so. Get out and enjoy the 'extra' days you have, why not? This isn't a dress rehearsal you know - another of my little sayings ha ha.
Nicky xx
Ps my 2 grown up daughters decided to have Carpe Diem as discreet tattoos done when I had my sec dx, so they can remember my words and live their lives in the same way, we forget how it affects our loved ones some times.