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Bone mets - please join in

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Lindyloo, My friendsd was on cap for many years! She swore by the Udderly Smooth cream. It comes In a tub with black and white cow print. I would put apicture on here but for some reason when I try to post a picture it says I don't have enough memory. Yet I put pictures up other places.

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Hi Lindyloo.  Sorry the E/E combo has failed but I honestly wouldnt worry about going onto Cape.  I was on it for three and a half years.  Started off at a high dose and I must admit my poor hands and feet really went throughmthe mill.  But they soon put me on a lower dose, which worked well and. I had no more side effects.  For me it was a wonder drug and as i go on to starting Paclitaxel next week I would give anything to go back onto Cape.  Good luck with it, you will be fine i am sure.  Xx

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Hi Funnyface

Thank you for your kind words and support. I did realise you have been on cap. I have been looking on Amazon regarding uddly cream. I am not sure which one is best as there is so many to choose from.
How are you getting on with E/E?

I am going try and delay treatment for 2 weeks. I just don't want to be poorly and spoil the day.

Take care.
Linda

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Lyndyloo, I'm sorry! I understand the not working and changing before the wedding. Two years ago in July I had a toxic reaction to functioning. It inflamed my lungs. I was so SOB I couldn't even put my own socks on. My daughter was getting married in Aug. I ended up on O2! They changed my meds and thought I would lose my hair. All I wanted to do was go to my daughter's wedding, enjoy it and not feel miserable. Well my lungs healed and I didn't need O2, I didn't lose my hair, but the new drugs had my knees screaming at me.  I ended up on crutches. Not for the wedding though. I took mega pain killers to get through! All and all I did get to enjoy it!! Many moons ago I took cap for 2 years! The normal dose is 1250 twice daily. On 3 weeks off 1 week. I really didn't have any side effects except the bottom half on my feet discolored. It is known  for severe reactions of the feet! The important thing is lotion, lotion, lotion! Lather those feet at least 2x a day. If your feet bother you, call your onc. Do not let them get out of control!!! That's my best advice!  Good luck! You should be able to enjoy  yourself on this drug. Hugs! FF

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Hi Ramade

No they did not say which one had failed. The upside I suppose it worked for 3.1/2 years and before that Letrozole worked for 4 years. Hopefully I will get as long on the new treatment Dont want to go in introvenus chemo. Hopefully something new will come along.

Carolyn

Thank you for your response. I have posted on the Cap thread as well. Hopefully you will get as long as me on Letrozole fingers crossed. Wish someone would find a cure.

Pleased the way it has worked out and managed a lovely holiday with all family. I feel life is mapped out.

Take care.

Linda.


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Hi Lyndy, sorry treatment has stopped working, do they know if it was the exemestane or the everolimus that stopped. As my e/e didn't work at all they're still trying to work out which one failed. Brave girl for taking news so well. We're all together! Wishing you luck with your new treatment, hopefully not too many side effects.

ramade xxxx hugs xx

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Hello lindy loo

Oh dearie me sorry your treatment has stopped working ..it's tough as you sort of get used to it and it's side effects ...like a comfy pair of slippers ..but you can now be a cape crusader ..if you go to that thread ..you will get loads of support as it's a tried and tested chemo pill and there will be so much help and support to ease you into it.
Try not to worry too much ( says me here just on a little letrozole pill a day )

Sending u hugs ..but please stay here on this thread too ...
Xxx
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Evening everyone

Just to let you all know eventually got my scan results today not good news now got 2 tiny spots of edge of liver so changing treatment to Cap which I start next week.

Not looking forward to change of treatment as I have alot of things planned at the end of this month. Daughter and granddaughter are going to be bridesmaids which I still hope to attend.

Can I pick anyone's brains regarding this treatment.

How soon after starting treatment did you notice any sides effects?

Did you have to stop the hormone treatment before starting Cap.?

Did you suffer alot of side effects?

I am starting on the normal doseage I am not sure what they mean by that.

Does anyone know what the different dosages are?

Sorry about all the questions hate going into the unknown.

Not had chance to catch up on the forum today.

Hope everyone is as well as can be expected in our situation.

Night night.

Linda

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HI FUNNYFACE ,

PLEASED TO SEE YOU ARE OK BUT VERY HARROWING FOR YOU TO WATCH ,YET SO NEAR AND SO FAR AWAY BUT BAD ENUGH FOR US IN ENGLAND TO SEE ,,VERY STRANGE WEATHER INDEED AND GRADUALLY GETTING WORSE,

MY DAUGHTER IN LAWS SISTER HAS A HOTEL ON THE BEACH IN ANGUILLA,IT HAS ALL BEEN SHATTERED AND WHILE THEY WERE IN NEW YORK VISITING,NOT GOOD AT ALL.

HJUST STARTED MT CHEMO TABLETS TODAY SO FINGERS CROSSED 

RENEEXXXX

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We are fine we are far from there. We will get rain from it in a few days. Between Florida and Texas  and the hurricanes and other states having forrest fires going on its crazy! FF

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Lyndyloo, very good luck today with your results, am thinking of you.

ramade xxxx

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Hiya
Think we have the tail end of the hurricane here as it's very windy!! ..hubby's garden looks like a flower cemetery and where do all the plastic carrier bags come from ..that fly around and then hang on the phone wires and trees?
Keep safe everyone xx
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Yes, a shout out to FF, hope you are safe! The weather looks very angry and frightening very frightening over there!
Our weather here is horrible, BUT nothing compared to Florida and the Caribbean!
Hugs Janette xx
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Hello ff
Hope you are safe and well there after the hurricanes ...just watching it on TV now.
Wow ..thats a lot of weight loss ...you will just have to tuck the surplus skin in your size 14 pants ..no one will see it under neath !!
Xx
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Carolyn, I wear 10 wide in USA sizes. I wish my feet would shrink! As far as pants I would love to be a 12! I just got into a pair of regular size 16!! I'm finally out of plus size!! Down 80 lbs now! Hoping for 30 more! I figure I will mostly be in 14's when I'm done and some 16's. I won't be able to lose more than that. I don't have the money to have skin fixed. I will be OK in Capris and short sleeve shirts. I won't go out in public in shorts! FF

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Hello nanofthree

Well at least you have taken me seriously ...it's weird isn't it? Not complaining as I like being a size 5 rather than a 6 ...would prefer to be a size 12 in jeans as well though. ..no chance with all the crap food and choc I eat !!!
Happy days xxxx
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Hi Carolyn.  Do you know I was thinking the same the other day.  I just dont get it.  Weird!  Or is it something that happens to ladies of a certain age?????  Cant remember if my mum had that problem.  So you are not alone.  Xx

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Hi FF.  I am going to be on Paclitaxel.   As it is getting closer to the start of this treatment I am feeling sick with worry.  I think it is two things - every time I look in the mirror and see my bald head the reminder of the cancer is there.. Also, what the hell happens if I am lucky enough to get through this, what next?  Xx

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Evening Nanofthree

Regarding treatment I had Fec and Taxetere in 2009. After that I was on Letrozole for 4 years until Feb 2014 when it stopped working. Since then I have been on E/E.

I have only heard of Cap as a tablet chemo did not realise there was so many.

I am now starting to get panicky about tomorrow and scan results.

Hugs
Linda

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Renee, Lotion, lotion, lotion!!!!! It is known for burning feet. Udderly Smooth cream works very well!!! You probably can get it on Amazon. A lot of ladies have to have the dose lowered bc of their feet. My feet were a ready brown on the bottom. It was weird, I was blaming the discovering on my Berkinstocks. It came up my feet to wear the edge of them did. Then months after I came off it I noticed my feet were back to their normal color. I got 2 years out of this chemo and didn't n ed d a dose reduction.  My friend got 7! Good luck! You are amazing!! FF

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Oh Renee
Nice to hear from you ..we were all worried ..phew that's a lot of treatment ...I'm a numpty with regimes but they are certainly hitting your cancer from all directions! !
My friend is on cape and letrozole combo ..and tolerating it well but other sensible ladies here will know about all this ..
Just wanted to pop in and say hello really
Hugs xxxx
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hi funny face ,carolyn and all you ladies ,

nothing to do with this site at all, but have just not felt up to posting

when i first started treatment i was on chemo herceptin and perjeta ,but could not tolerate the chemo as ended up in hospital each cycle ,so they removed it and have just been on herceptin and perjeta ,and for all on these drugs my breast ,lung and liver have all grown ,plus small mets on sturnum and under armpit ,so have now put me on 2,300 grms of capecitabine daily for two weeks then a weeks break ,but also kept me on herceptin ,plus radio therapy on breast as it is bleeding and weeping,so a lot to take in and afraid i get very down when given news like this ,i do know people are much worse off than me but can not change the way i am made,i just hope this chemo suits me better than the last one ,but would be grateful of any advice on these drugs together,or to be truthful any advice at all .

thanks ever so much 

reneex

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Has anyone noticed their feet getting smaller with this cancer lark ? In the last year I have dropped a whole size .. ( pity my bum doesn't do the same) I have two theories :
1. I am abducted by aliens at night that are filing down my toes bit by bit

Or

2. I'm wearing more sensible shoes these days which allow for bunions and swollen feet !

Xxx☺☺☺
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Good morning ladies

Wendy. .I'm sure letrozole will work it's magic for your new mets ..loads of ladies here on it ..Jeanette and I in particular are 2 years down the line with it and it's done exactly what it says on the tin ...kept the little blighters from partying too much in the bones ...don't know for much longer but I hope there is something else oncologist will pull out his magic bag when the time comes .

Well ff ..where's my soup ? I'm looking forward to some too ...mmmm mm. .

Hugs everyone xxxxx
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Hi All

It must be that time of year where we are feeling down but at least it has stopped raining in London. I had my scan results on Friday and tamoxifen has stopped working and I have a met on my spine which is causing my hip pain. So back to radiotherapy and changed to letrozole and the drug that brings on the menopause as I am peri not post. Absolutely gutted but I was coping ok with the news until my Mum who has been very practical and strong throughout got really upset yesterday and now in need of some hope as frightened these tablets won't work for long. On the bright side my daughter is 21 next weekend and determined to enjoy . Enjoy the weekend
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Lyndyloo, There aren't many chemos that come in pill form! They need to get busy on that! You girls are crazy with the cold caps! Not this girl! I'd rather lose my hair than put ice on my head. I'm afraid I d I'd never get warm again! Good luck! FF

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Nanothree, Vinorelbine and navelbine are the same drug. Navelbine is the brand name, vinorelbine is the generic. It is available by infusion or tablets. Epirubicin is a different drug.It is an infusion. I haven't seen it available in pill form. I wish all the drugs were available in pill form. Sure would make it easier. What drug are you going to be on.? Wishing you the best. FF

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Renee, You have been quiet. Hoping all is OK. I know you had an overwhelming amount of appointments to get through! Wishing I could drop off soup to you too! FF

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Maldives, Checking up on you! Hoping your procedure went smoothly! Wishing I could drop off some soup! Hugs FF

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Hello crissy and nanofthree
Life's tough for you both at the moment so I'm sending u lots of hugs and stay with us here for kindness and support when u have the bad days ..but there will be good ones too to enjoy ..
People always say stop and smell the roses ..this can be a little treat ..a nice new lipstick, some choc or even a nice walk sometimes helps ..
Hugs xxxx
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Congrats Nicky! You are going to have a blast shopping, duemp trucks, footballs, work boots, sporty clothes! You will be busy plastering him with kisses! Enjoy! FF 

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Hi Crissy.  I know exactly how you feel.  I have never felt as low as I do today.  I get so envious of people who live a 'normal' life, able to plan.  Of course nobody knows what the future holds but this is something else isnt it.  I too long to see my grandchildren grow up.   I am due to start Paclitaxol in 10 days time.  I have coped so well on the other treatments I have had over the past 8 years witH secondaries but this will be a whole new ball game.  Please try not to worry about your upcoming scans. I did at first and now realise that the energy I spent on worrying and taking it out on my poor husband was all wasted energy.  I am sure you will be fine anyway.  Just to let you know you are not alone. Xx

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Hi Lindyloo.  I am due to start my new treatment on 18 September.  Couldnt sleep last night for worrying about it all.  I was on Vinorilbine and Epirubicin with my primaries 16 years ago and they were horrendous.  I have been on Capecitabine with secondaries, which of course is a tablet chemo.  Would you know anything about Epirubicin (also called Navelbine) which is a tablet chemo.  I was wondering whether to ask the hospital about this.  I really dont want to have to spend a whole day each week there, tablets are so much more convenient.  Unfortunately my hair has thinned a lot on Palbociclib so there isnt much to salvage!  If it was a full head of hair I would definitely try the cold cap. Xx

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Hi all I've been reading but not posting for a while because my treatment seems to be going ok.

CA15 has come down from 377 to 300. I understand that the norm is 30, but only been on Tamoxifen and Denosumab for 5.1/2months since mets in scull and spine diagnosed.

 

I have been reading your posts and the reality of this illness hits when I read how most of you have been on a very cruel rollercoaster ride.

 

It's the arthritus in feet, knees and hip that give me problems.

 

I know that the cancer is dancing around my body and looking for a spot to take a rest and deposit something nasty.

I am to have my first CT scan since diagnosis at the end of October, and to be honest I am terrified what it's going to show. I knew from the start of my breast cancer in 2013 that I would be lucky to go 5 years without secondry as I had 14 lymph nodes removed and they all had cancer in them.

 

It's just so difficult to just get on with it but we have no option. I want to stay around to see my 4 beautiful granddaughter 's  and my great grandson who is due early December to grow into wonderful people, 

 

Sorry to unburden myself on you all but on a bit of a downer at the moment. 

Lots of love hugs and kisses to you all, we are all in the same boat hopefully none of us yet are in the speedboat. We all want to be in that slow boat to China.

 

Crissy xxx

 

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Hi nanofthree

So sorry you have to go onto chemo. Just wondering have exhausted all the tablet form of chemo now?

Like you I am dreading going back onto chemo and loosing all my hair. I was not offered cold cap back in 2009. I would definitely give it a try now.

When do you start your new treatment?

Have a good weekend everyone.

Sending huge hugs. Linda

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Hello nanofthree
I'm sorry that you have to start the big guns chemo and loose your hair ..it's a horrible side effect which most of us fear ..although mine was 13 years ago ..I remember it well ..my fringe coming out in the shower etc etc.
Maybe you could try cold capping. .lots of ladies here do and cope well ..I've seen ladies in he chemo unit ...yes its looks cold though !!

Yes ..got the printer set up eventually. ..think I'm too old for technology these days ..
Hugs xxx
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Good evening everyone.  Nicky I am so thrilled at your news.  A new grandson is wonderful.  Do they live near you so you will see him loads?  I will PM you when I have worked out how to do it!  Any tips?  Well, I went to the hospital today and have been taken off palbociclib and Faslodex and will start Paclitaxol in 10 days time.  Feeling so very down.  I did ask about Eribulin and they said this is probably the next treatment.  So here I go on the wig hunt again.  It is 16 years since I last wore one so I am quite a bit older now so am trying not to go for something too trendy in case i look ridiculous!  I hope everyone picks up soon.  The weather doesnt help does it.  Carolyn I hope you arent still trying to install the printer!  Dont spend all weekend on it!  Xx

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Well the weather has been miserable but where there is rain there are also, occasionally, rainbows.

100_8962.JPG

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Hi Anneemay
Sorry to hear your news. Don't cancel your holiday unless there's no alternative. It will do you so much good. Bonxx

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Hi Nicky
I'm so thrilled to hear your news. Really special for you because of your long journey through cancer and your determination throughout. We can only thank you for sharing all the knowledge and wisdom you have acquired along the way. Bon xx

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Hi Jellytot
I'm sorry you are having bad menopausal symptoms. I know that not sleeping can take over your whole life and drag you down. As others have said, try and find something good to do each day and if you could find someone to talk to who is concerned but not personally involved, it might help you.
big hugs Bon xx

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Hi girls - just checking in too.

 

there must be somehthing in the air as I've been in the gutters too... well, still feel pretty overwhelmed too.  I know I should check back to see what I've told you or not but in between coming home and taking girls swimming so short of time.  Anyway, the latest is that the mets are now in the liver too... although not on the brain I do have mets on my skull which we didn't know ...

now waiting for the onc coming back but think he will say chemo... 😔

got to go but will tell you more later xxxxx

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Annemay, That sure was a lot to take in. I'm always amazed at how fast this cancer can move. I get so upset when these oncs take there good old time with getting people on treatments. Let's  with the simple first. Have you ever had radiation to your bones before? I have not , but have heard most peeps say it can hurt worse for a few weeks b4 it gets better. For your liver and lungs it sounds like you need to get started on chemo to knock them buggers back. Maybe if they get you on a chemo your lung won't need drained. Have you had any oral chemos! I will admit the eye issue would have me worried, but maybe it's just a boney met that can be zapped. It would be great if you could squeeze in all these tests, go away for the week then start treatment on return. If you feel you need to get busy with treatment then do it. I know you want to go away, but maybe you can reschedule when you get things under control. I'm stomping my feet for you in anger! I'm so sorry this has put you in limbo. Not fair at all!! Big hugs! FF

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Update on printer installation ...on step 6 now ..but two tubes of smarties are helping ..should be prescribed on monthly prescription as feel good therapy !!

It's having to keep scrolling through 15 language options to get to the next step. ..pity I can't speak foreign! !
Xxx☺☺
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Hello anneemay
Phew that's a lot of bad news to cope with but I'm sure your holiday will boost you a lot and maybe some clean italian air will help the sob effect.
I think the doom and gloom of winter and dark nights is pulling us all down a bit lately ...
Hugs xxx

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Well the weather is reflecting how I am feeling right now miserable and I think possibly a damn good cry would clear the air. I apologise for being so negative as I normall try to keep this disease in perspective and carry on with getting on with life. I saw my oncologist yesterday for review, following discontinuing Paclitaxol chemo last month as the recent CT showed further progression in the liver. I have also had radiotherapy to my right shoulder and spine due to pain which is still very evident after just over 2 weeks. The plan had been that I would commence Eribulin following a holiday that both consultants had said we would benefit from. So we booked a weeks holiday to Lake Garda Italy by coach and are due to go next Friday the15th we have been so looking forward to getting a way.

 

However after talking about my shoulder and arm re radiotherapy she asked me about my eyes, specifically how long my left eye had been smaller than the right. So now I am waiting for a urgent brain MRI to see if there are any mets there. I also mentioned that I have been getting SOB on excertion recently since stopping chemo. I do have a known right pleural effusion but again has this worsened since stopping chemo? She has also requested a CXR to see if this is the case and if so this will require draining.

 

Now I am in limbo waiting on a telephone call re appointments as until we know what we are dealing with I can't move on and am really anxious about whether I will be well enough to go. Ann xx

 

PS Big Hugs to all who are also feeling low at the moment this disease is constantly giving us highs and lows in our lives. Two steps forward and three back !!!

 

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Well ladies on mission impossible here today ...

Bought grandson a all singing, all dancing Printer to do his homework on ... ( everything is on his I phone these days not in exercise books like mine was !) Anyway...an hour to unpack it so far ..with so many bits and bobs ....the instructions are in 15 languages and I'm only on step 4 ..inserting the ink cartridges !! It's going to be a long day !!
Wish me luck ...I have 2 tubes of smarties on standby to boost my sugar levels !!!
Xx📠📠📠
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Congratulations nicky ...so now it's all about thomas the tank engine and not barbie ( after having 2 girls !) ..you will soon learn all the engine names !!
Jellytot ..there's nothing much else I can say as you have had some lovely replies but hang in there ...there are good days amongst the bad ones! !!
Xxxx
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Awww congratulations Nicky, that is just wonderful news! Hope mother and son are doing fine.
Hugs Janette xxx
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Morning ladies, it sounds like a few of us are struggling at the moment. Luckily for me I have a new grandson, born last night, to perk me up 😊👶🏻 but I fully understand how difficult things are for so many of us. The ones just diagnosed who are mourning the loss of the life they expected to lead and the longer term survivors who worry about how many treatments we have left and how long can we 'dodge the bullet'. It's not easy for us or the family, who support us but who  we don't want to upset. This forum is a good place to offload as we do all know how we all feel, something that even our loved ones and friends do not at times. I used to get so resentful about my 'healthy' friends and even now I can be very honest with them especially about me not being able to plan too far in the future. As I got my head around my mets diagnosis I started off planning a few small treats, a walk, a cinema visit, a meal out to lift me up. Once I got past the first 3 monthly scan I started to plan to do a few bigger things, until my next scan, so I planned in 3 monthly chunks. That way OH and I could still go on holiday and have something to look forward to. We have always booked things we know we can cancel ie hotels with free cancellation, flights that can be refunded (found this trick out by using Avios, all collected courtesy of supermarkets etc) so this took the pressure off us, or off me I should say. No need to claim on insurance and only travelling when everything was stable or I felt well.  It takes a while to get to this stage and everything at the beginning especially feels so awful. If you are feeling really down, Jellytot (and not surprisingly so as you deal with menopausal side effects as well as the loss you and your husband feel about not being able to have a family) it might be worth having some counselling? It's not for everyone but if you find the right person it might help? I have felt very down, borderline clinically depressed, on at least two occasions but luckily managed to get out of the black hole without needing to take any more tablets than I already do! On both occasions I also lost a lot of weight, like you JT, as I had no interest in food and everything seems so pointless. As with you FF my 2 daughters have grown up with my cancer, which is so sad. They were 14 and 12 when I had my primary but I count myself lucky that I have seen them grow up into 2 beautiful adults, gone through all of their education including university, which I didn't ever expect to be around for. My eldest got married last year and now has just given birth to my grandson. I count my blessings but do know that life is not easy for any of us as the big C word hangs over us all the time, but we get on and don't sweat the small stuff!

Nicky x

ps Nanof3 sorry you also are feeling low, do keep coming on here for support, or PM me as we are in a similar position both treatment wise and length of service!