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.
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.
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
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.
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
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
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...
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
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......
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
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
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
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.
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
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
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.
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.