*tamoxifen* 31- in the bus shelter with the cheap booze

[Gigondas]

Shiny new thread

Ugh! Another grey day, Off out to take down the Christmas lights. I may be some time. I always struggle a bit putting the deccies away. I still haven't enough confidence in life to be sure of being here to get them out again in a years time, still I've managed to do it 11 times since treatment so perhaps I need to put those thoughts into the box with the new addition to the front garden light display, the Christmas Seal

AtoZ Glad you are feeling brighter and good luck for tomorrow. I hope that you are one of the lucky ones who have no problems. When I had my chemo I was given a lovely shiny pink pamphlet full of positive stories, a promotional brochure for Chemo!!! Such people must exist! The Consultant handed it to me with a straight face .

Don't worry that you are going on about pets, you are amongst the like minded! When goon dog, hyperactive pain though he is, goes to the kennels before we go on holiday the whole family is bereft and the house feels very empty (given we all have to be constantly watching out for his talent for tripping you up). I really would put aside your worries about a cat's long term future, as you say offering a home and love now is the important thing. When we went to live abroad we had to rehome our cat and he was so happy there that I didn't have the heart to uproot him back to our family. He died a month or so ago having had a lovely long life in both homes, after a terrible start born feral on a building site. Now we have psycho cat, who smells and demands attention with menaces and takes great pleasure in ambushing goon dog. Whenever I take him to the vets I get told off about all the scratch marks on his face but what can I do??!! Do they do self defence classes for dogs?

Ned Yeah, a year! I seem to remember Dr Geek dusting off some nice new statistics for me at a year so I think it is a landmark.

Topsy Sleep from being my default state in the past, seems to have become a luxury in the last couple of years. Menopause apparently, means you are short of melatonin. All the doctor can offer is sleeping pills which go unused at the back of my bra drawer and advice on a routine of going to bed early in a cool room with no stimulation from TV or reading, no alcohol, perhaps a warm drink of Ovaltine? Not ready for that yet!!! So I stay tired and lie awake worrying about stupid things at 4 am....................

Phew thanks for the link. I don't know what happened the thread just went and I had not hidden it.

Made me realise what a lifeline this thread is. Thanks for being so wonderful. I am in the middle of a busy day will be back later.

Aaarrggghh - the thread is still not showing up for me unless I go through that link. Also not in my watch list . Sob.

Mas I was told by Onc that lung mets meant 2/3 years .
But then she did go on to say that it could also be 30/40 years .
Basically they don't know .
Treatments are getting better and better on an almost daily basis . And it also depends on how your body and your cancer reacts to the treatments .

Onc said there is no reason why I couldn't carry on indefinitely , just getting treatment as and when necessary .

Phew sorted it. I had hidden

Ned, a whole year! Wow, that's definitely one to celebrate. Put 2012 down and pick up 2013. Won't be hard for it to be a better year.

AtoZ, what you say sounds more than sane and sensible. After all, why wouldn't you feel low and like there's no point in planning lovely things such as a new pet or travel. I'd bet we'd all admit to having planned our own funerals, looked at our DC and sobbed quietly, loudly and mourned ourselves in lots of ways. Thing is though that you do get bored of that after a while. That isn't me being dismissive, as I am still terrified by cancer, but it's just that the further you go post diagnosis, the more you start to see that cancer is now part of your life, but that life goes on. It's like an exhausting conveyor belt or something which you have no choice but to stay on as best you can.

We're all different, but I honestly found the first few months the hardest. I'd say all you can do right now is take it day by day. You don't need to give up hopes of cats/ holidays/ whatever life you might have planned before, as you don't yet know what's next. Yes it could be awful, but equally they're putting you through all of this treatment because there's a point and a strong chance of a good outcome. V.hard to accept that I found, but it's true, and there will come a point when you're blasted by all the treatment and you look ahead and think well maybe, just maybe I do have a full life ahead. Might seem like a distant dream, but it's why you had that op and it's why you're having chemo, so it's got to be there somewhere.

With chemo, once you've done one you'll know how you're hit. I found there were always a few days at a certain point in the cycle when I felt okay enough to do things. Mine happened to be through the school summer holidays which was a sod, but I even went camping and swam in the sea during one cycle. Felt insane at the time, but it was v.life affirming! Are you having Rads too? Can't remember if you said so or not.

On travel insurance, you can get it still though obviously you wouldn't want to go v.far when having chemo and you can't go far if you have rads as you have to be at the hospital pretty much daily. What I've done since treatment finished is to pay for single trip insurance. They give you a choice, so you can opt to cover everything except cancer. That's what I've done up to now, as we're only ever away for a week or so and cancer's not going to make me collapse as if it comes back it'll be an ache or a lump which needs investigating. It's still more expensive than it used to be, but not ridiculously so. Once you're down the line a bit they let you have insurance back like a healthy person. Seems to kick in 2 or 3 years post diagnosis and is dependent on the type of cancer you've had.

Phew, epic post. Sorry! Really good luck tomorrow. Do you have 3G. Can we distract you while you're in hospital?

Topsy/ Copthall, I can't sleep either. The whole menopause hot flush thing is a sod as they wake me up 3/4 times a night. When do they finish, does anyone know? According to my team I'm post menopausal, but it's still hot flush central here. Really annoying..

Yes ned here is to a better year in 2013.

Atoz can't better what others have said here but don't think that it does mean the end of your plans. And echo what others have said about logging in or keeping in touch to post. I used to bombard the thread when I was doing chemo.

Mas my onc said something similar to topsy- no timeline just told years but probably similar average to bc. But incurable was used - not terminal. They don't actually know it will kill me -it could be death by a mountain of big gigs playmobil falling on me.

My shoulder pain creeping into my chest (at least I hope that is it as having a canceritis wobble).

Topsy why not put the wig on top of your hair to try to tame it?

@ being crushed by a tower of Playmobil...

Hi girls, I have a confession - I've been stalking this thread for 12 months now! - does this make me your longest saddest, maddest lurker? Sorry
My brief résumé is I was Dx with bc (IDC) last January, had neoadjuvant chemo followed by mx and prophylactic mx with immediate DIEP recon. I'm not on Tamoxifen, but am on Herceptin - just 3 more to go.
I love the sense of humour on here, and I'd like to join your gang - I have wine and cake!

Welcome snails-can I sit next to you if you have cake?

At stalking us.

Did someone say cake?

Welcome Snails - I'm excited that we have stalkers you are very welcome to the gang, I will scoot my fat bum along the sofa a bit to make room for you.

I was on herceptin too, as was amber - you are doing well if you have only 3 more to go. I'm hoping for a DIEP recon. during the next year (assuming I can lose enough weight), - it's four years since my original surgery, but after a lot of humming and ha -ing I've decided to go for it, - so when the time comes I shall pick your brains for operation tips

Anyway park yourself on a pew and have a

at Gigs being crushed by mountain of playmobil, - I miss the playmobil days, - we had the pirate ship, I bloody loved it! It allowed me to do my comedy pirate voice for an appreciative audience

MAS - stay away from google, - it becomes out of date very quickly, things are changing and outlooks becoming sunnier all the time.

Glad you found us again Pen - are you OK?

waving to Smee, Copt, Jane and basketz and anyne I've missed.

Anyone heard from sparkle recently? - hope you are doing OK sparkle if you are out there and reading this. Also Figgy - don't know if you are still reading the thread, but I often think of you and wonder how you are getting on

Other lost souls - any news of sometimes? Did she post over Christmas? Thinking of you if you're out there sometimes x

Did someone mention cake? Welcome to snails. I was dx March 2012 and have had quadrectomy, chemo, rads, am on Tamoxifen and have had 3 Herceptin so far.

Hope you are ok pen.

1in8 and pink are also missing. Thinking of you.

mas my chemo nurse still goes out to deliver treatment to a lady who has liver and lung mets. She is now 9 years post dx and is doing well. According to the nurse she is always 'racing about somewhere and loves her holidays' so definitely don't get too bogged down with a timescale. As topsy says treatments are evolving all the time.

kurri sounds like you had another good day yesterday. Glad the birthday tea was fun.

Hope you had to celebrate year anniversary ned. Good luck at work this week.

atoz Good luck with your chemo tomorrow. Once you get the first one over with you will know when your good days are and schedule outings, etc accordingly. I had the same conversation with my DH last night as I am really struggling at the moment, basically as others have said grieving for the life I thought I was going to have. I feel cheated and angry but I think it is just a process we all have to go through to enable us to start the next part iyswim.

gigs I will do a stint on the paranoia box for you. I have severe canceritis at the moment due to my shoulder pain which is probably caused by positioning in rads and too much time surfing the net but doesn't stop me worrying.

Pretty miserable day her - hope others are having better weather.

AtoZ sorry I havent been here for ages-sometimes life gets in the way :)
I finished my treatment in May 2007[dx Oct 2006] and had WLE,chemo [fec/t] and rads.
Yes it is doable and it is very exhausting but it passes and you move on to a new normal.
Travel insurance-try eurotunnel insurance-no medical questionnaire,no age limits very full cover and very reasonably priced.It cost us £31.30 for two-me with bc and dh aged 77 with diabetes and heart problems-for a week in France this year.
My friend has mets and her dh has problems but she got full cover easily.All you need is to ask your GP to note that you are 'fit to travel' a week before you go.
miaonline quoted £180 for similar cover.

hello all again. i am on and off mn at the moment, keep trying to do 'normal' things now i only have 16 days left of my 24 weeks of chemo!!!!

but the reality is that each day is worse than the previous day - i think that my body is really beginning to complain about the 11 doses of poison it has endured.

cannot believe how much I sleep - sometimes around 18 hours a day

SO tired, so fed up, so cannot wait for this bit to end and the hoped for recovery to begin...and when does everything stop tasting of celery?

Hi I'm so glad I plucked up the courage to post on this thread because everything that everyone has written just makes so much sense to me. I'm reading all the posts nodding my head off in agreement. It shows me that everyone seems to have gone through the same thoughts and feelings as I am working my way through. Therefore I will definitely get to a point where I can start to live with it.

No 3G tomorow unfortunately. Rucksack packed and raring to go.

Should be an interesting week

OTM, I never had the celery taste, mine was more metallic but it went about 10days after chemo finished for me. 16 days is great, though I'd bet you must feel too wiped out to celebrate. We'll have to have a party for you, even if you sleep in the corner.

v.excited by stalker joining, waving hello to Snails. Lovely to meet you, but what took you so long?! I was diagnosed with BC in 2010, had mastectomy, chemo and rads, then preventative mastectomy like you, though I have silicone implants. Am on Tamoxifen, but didn't do Herceptin. How's your new breast? Do you like it yet or does it still feel odd?

Gracie, I'll shuffle onto paranoia box for you and Gig. I am doing a bit better on that front, though have been there more times than I care to remember and am sure Lady P will revisit me before too long too.

Gig, when they did your MRI, was it just your leg? If wider, surely anything would have been spotted by that. I'd bet your shoulder's stress and mini-gig holding.

I think Kurri's right, MAS, as they don't say terminal as they can't know. All they can do is give you probable outcomes, but as Topsy shows, anything is possible.

Waving a hello to GreyLady, how are you these days?

Hope Ned that you're okay. Good luck with Counselling tomorrow, hope it puts you on a firm footing for return of mayhem your class.

HND, if you're there hope your bag's all packed and ready. Bet you can't wait for the op now it's so close. We'll be thinking of you, so rush back for tlc as soon as you can xx

Pen, are you keeping busy?? Hope you're okay.

Who have I missed? Lots I know. Sorry run out of time. Better go feed DS. I can hear him raiding the fridge..

AtoZ, you'll feel better once it's started. Just give into it and see what your body does with it. Fingers crossed for few side effects. Don't be brave in terms of drugs which might help, tell the team the minute you feel sick/ ache/ anything, as often the drugs which counteract are far more effective if taken quickly. You will get through this. Come back soon. xx

MRI was just groin but was nothing on last ct scan. Have another in week and a half. Am almost certain it is muscular for reasons you said (plus iI only hurts in certain positions ).

And otm would agree that taste back about 2 weeks later (and eyelashes not much longer after- you weren't kidding about how much thicker they come back smee).

Need to get my head round all the open uni stuff this week as have a big box of info and reading to do.

I am ok thanks. I feel a lot better for not having to go to work and put on a brave face. If I have a wobble I can just go upstairs for a bit.

I have been reading about Clare Baldings experiences of thyroid cancer and she had 3 lots of surgery.

I am so paranoid and any ache worries me. Guess I will have to get used to that.

Welcome snails

Hello Snails , what flavour cake ?
Sniffs hopefully ...

Mas another thing about being given averages of survival rates by medics that I have just remembered .
My Onc said something about medical averages being very different to everyday averages . They call it something like "medial averages" ???
Which is based on data from a few years ago (which we all know is a very long time in the treatment of cancer)
So she was very reluctant to give me an average but I insisted !

Hi smee I am absolutely fine atm [fingers crossed] hoping to celebrate 25th wedding anniversary in December :)
Chemo is horrid and the effects are cumulative.The thing is to remember that it will go on getting worse for a couple of weeks after the last one.then it almost imperceptibly gets better.I measured it by trying to walk a little further each day-oh the delight when I walked the 300 yards to the village coffee shop!
it was at least 18months before I was anywhere near normal.It was the early days of taxotere for primaries and I had 4 tax after 4 fec and it was frightening.

Welcome to snails and cake? Yes please

Arrived back home after mad journey avoiding motorways. Warning light on car and though I thought it would be ok, didn't want to pay for a tow off m1 if not...
Dh making Sunday lunch, aargh, already eaten a roast dinner with Mum... Oh just a little then...
We had 18 years without a cat. Don't know why it took us so long - Should have got one years ago! He is such a cutie.

welcome snails - am very chuffed that we have stalkers -especially cake bearing ones..
Waves to otmand greylady
You are all right about stats and possible outcomes etc..google can sometimes be very blunt and it's best not to take any notice.
Shove up on the paranoia box and I'll add my weight to the lid.