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Anyone in my position?

24 REPLIES 24
Guest user
Not applicable

Re: Anyone in my position?

Hi Susan,
I was diagnosed 1 1/2 years ago with lung mets, and am fine at the moment. I hope all the responses you've got have helped you to feel less alone and given you some practical tips on how to handle this awful situation. My local hospice has a childrens worker who I know I can contact should my son( who's 4 ) need any extra support. There may well be a service like this near you.

I also got married to my long term partner 3 months after my diagnosis, and it was a wonderful day-my son had such a good time he keeps badgering us to do it again!
Love
Nicky

Jacksy
Member

Re: Anyone in my position?

Hi Susan,
I just wanted to say hi as well. I too was diagnosed with secondaries at the same time as diagnosis (March 07) and spent most of last year on chemo. Now I'm on herceptin and tamoxifen.I have three children, the youngest is 10.
I just remember the utter feeling of shock and numbness at the beginning. Everyone else has said all the things I would want to say to you, but the top three are: go easy on yourself, accept all offers of practical help without feeling guilty (people actually want to be able to help - they, like us, feel powerless in the face of this diagnosis), and keep posting all your worries, fears and questions on here.
I've met up with other people from the secondary forums and it's been a brilliant source of support.
Something I found really useful was to email round an update whenever I saw the onc or something changed, to friends and family. So many people have told me how much they appreciated it, so they knew how things were going and didn't have to get over the hurdle of asking each time they saw me. Some people wanted to be informed so they could pray, some would bring round flowers or a card when they knew I'd had bad news or was struggling, and I got loads of lovely supportive emails back from people. It really helped me to feel I wasn't alone and I was supported, and saved a lot of repeating myself. It may not be your style, but i found it quite therapeutic, to order my thoughts and get my head around what had been said by the doctor.
I'm glad you're feeling a bit better already -hope that continues. As others have said, there's a lot they can give you for the side-effects - don't suffer in silence.
Very best of luck
love
Jacquie

Ann_BCC_
Member

Re: Anyone in my position?

Hi Susan

Congratulations on the wedding from all of us on the forum team.

Ann

Guest user
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Re: Anyone in my position?

Hi Susan,
Ian and I got married the month after my sec diag in the beginning we celebrated every month with a card or a meal out after our 25th month we did silver wedding card. Then we thought o.k. we can cope now so we stopped the monthly cards. Next June will be our 5th anniversary we did not expect to make the 5th month so never give up. Congratulations enjoy every second.

Love Debsxxx

Guest user
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Re: Anyone in my position?

I've just come back onto the forum after leaving my original message and can't believe how many responses I've had. Thank you everyone you have made me feel not so quite alone.

I'm starting to feel a bit better now after my first lot of FEC, I didn't think it would kick in so soon!! it was a matter of hours before I was feeling sick.

I do have a partner and he is absolutely fantastic but it's still really difficult to get your head round the fact that you are not going to see your kids to grow up and do all the things you dreamed about.

I met my partner at school when I was 14, so we've had 18 years together (this month) and we've decided to get married and set a date for 6th December 08 my eldest son is delighted and wants a James Bond suit!!

Thanks for all the ideas about memory boxes, I've been worried how much my children will remember of me especially my 3 year old.

Guest user
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Re: Anyone in my position?

I can only echo what has already been said so eloquently by others all of whom have given me tremendous support when times have been difficult, I think because each of us has been in that very difficult place. My secondaries in the lung were diagnosed just over 2 years ago, I didn't have any noticeable symptons and the spread to my lung was picked up on my annual check up,
. I am on my 4th chemo, and dealing with further spread. This year has been very hard and so difficult for my family, my children are 17 and 14 but I can only agree that it is inconceivable for us as mums to think about leavong them at any age
Do keep posting and let us know how you are getting on
Best Wishes Kathryn.

Guest user
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Re: Anyone in my position?

Hi Susan
Jayne here - with secondaries in bone and liver ( diagnosed september) so fairly new to the shock and horror of it all - I'm not yet as wise and knowledgeable as these wonderful women who have responded to you but just wanted to acknowledge your distress - someone wrote me a card the other day and said " you are stronger than you think" ...well maybe we all here have to be ........right now I'm in very early stages of treatment - I find I'm qiute obessive about thinking gloomy thoughts but am taking heart from reading your responses from others who have moved on ( at least at times ) from this - my only escape seems to be distraction - anything that absorbs me - I sometimes feel completly mad around others - when they are talking about ordinary every day things.........and I have a different tape running in my head.........I have just been referred to pallative care team , who can offer some emotional support - so will let you know how that goes........ I just feel i have some thoughts that I can't tell family or friends... but they need to get out -.... take care , Jayne

Guest user
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Re: Anyone in my position?

Hi Susan,

I was diagnosed in June 2007. Have 2 children,4 and 3 yr old. I had FEC first, then Taxotere, then Xeloda and now I'm on Navelbine, which seems to keep things under control. Like you I was devastated when told about secondaries in liver. I have found a lot of help in these forums. One of the hardest things I've ever done was write letters to my kids, but once they were done I felt better. Then Dippykate told me to make memory boxes as well. I have done, some of it together with my kids and that helped a lot too. I know it all seems so awful when you first think about it, but once you start it does help. I don't think I'll ever come to terms with the why me but really, there's nothing we can do to change it and we have to get on with it. On top of everything else I'm having to cope without my partner, who is Gambian and can't get a visa. I do hope your treatment goes well and that you have many more years with your kids

love Maroke

dm1968
Member

Re: Anyone in my position?

Hi Susan

You are certainly not pathetic. I can understand entirely where you are coming from. I was dx in July 07 with bc and liver mets all at the same time. I had 3 x FEC and 3 x taxotere, and then started Herceptin in Dec 07. I turned 40 this year, which I thought I would never see, and I have two children a 4 year old daughter and a nearly 2 year old son.

It is devastating to say the least and the sadness, worry and I felt guilt too, wondering how long I will be around for my beautiful children. But take each day as it comes, and things do become easier, you learn to live with it. And your children will be the ones that help you, as life has to carry on regardless with routine etc, and they also make you smile and laugh even when you are low.

I hope your treatment goes well for you, and ask any questions you need to. This site has been a godsend for me, with information and support.

Take care and lots of love
Dawn
xxx

Guest user
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Re: Anyone in my position?

My secondaries were diagnosed in March - I thnk I have ust got my head round things - but still find it hard to talk to anyone. One round of chemo over and hopefully I am stable - it's a whole new world.

I have two young girls 8 & 4 and my aim is to ensure thay have the best time with me that they can have.

Geraldine

Guest user
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Re: Anyone in my position?

Hi
I'm not usre what else I can add as so much has been said already.
I was diagnosed in april 05 but it was a large tumour andI had a lot lof lymph involvement. I had FEC x 6 before the surgery. I always felt really rough for the first 4-5 days and the nwould improve but always felt tired and was really bad tempered on FEC. It is your first cycle so you are not sure what to expect and often feel quite different to what you thought having chemo would make you feel. No wonder you feel awful. You've had a huge shock plus surgery and now chemo and the news of secondaries. That is a lot ot handle at once.
Make sure you get lots of practical help as well as emotional support and if people offer to do your ironing, housework or take the children out then do let them help you. People wouldn't offer to help if they didn't mean it.
I developed skin spread after my mastectomy in nov 05 and then spent a lot of 2006 in pain with my hip and being short of breath but nothing showed in scans until sept 06 when it was confirmed that I had spread in my bones, lung and liver. At that time i was told I might only live 3 months but I'm still here just over 2 years later. My children are now 8 and 11 and as my cancer is very aggressive, they now understand how ill I am but i'm in a different place physically and emotionally to you. We have had a lot of help from the school who have special emotional support learning assistants who helped the children understand and come to terms with me having cancer and being ill. We also get help from the hospice social worker - I've been under the care of the hospice for 2 years and been going to a daycare session there once a week for nearly a year now where they do all sorts of complementary therapies and have a hairdresser and manicurist as well so it is like a pamper day every week!!
Don't be so hard on yourself - that's the problem with secondaries - lots of times they give no symptoms so you can't blame yourself for not knowing something was wrong.
As you have read, there are lots of women who have young children and have secondaries and somehow we manage to get by. You have to seize the moment and enjoy everyday. I try to create happy memories for my children and my hubby as well and feel devastated that I won't see
them grow up. Like Deirdre, I've done memory books and actually some of it has been quite fun to do and is probably something we all should do regardless if have cancer or not.
I would not have survived physically and emotionally without these forums, BCC days and meeting other women with bc. I use secondary chat a lot and find it is a brilliant place to get that extra bit of support in privacy as only those with secondaries can go onto live chat. I've also found the ask the nurse service brilliant as well as if they don't know the answer they will try to findout for you so they are good at giving some extra support.
Please ask any question or express any fear/worry you have and usually there is someone here that can help you. We are bad at using abbreviations and I know when I first started posting I didn't understand a lot of the abbreviations used so please ask if we use a word/letters you are not familiar with.
You are so recently diagnosed that I'm not surprised that things feel so bleak for you. With time your feelings change - we all get angry at the unfairness of this **** disease especially where children are effected and all get upset that our lives are not going to be the same and much shorter than we all planned for.
You didn't say anything about if you had a partner but often partners and family/friends can struggle as well wth our diagnosis and that can be stressfull as often we want to protect them as wel and sometimes their worry comes across as anger or distancing themselves which also makes it hard to handle. For yourself, counselling can be helpful but it is a thing that not all people want.
Hopefully, this chemo will really work and shrink those secondaries so that you can have some time off chemo and feeling well and not having chemo side effects. There are quite a few options with chemo so in the future if it returns there are diferent chemos out there and if you are hormone positive then there are options there too.
Please post whenever you need to and we'll try to help you. When you feel up to it. secondary live chat on a tues night is very good - informative, supportive and also we have a bit of fun.
I'm so sorry that you've had to join us here and I can understand how devastated you must be feeling.
Thinking of you
Kate

Guest user
Not applicable

Re: Anyone in my position?

I am struck by how many women with young children have responded here.

It is really, really hard to cope with this diagnosis, especially in the early days. I was diagnosed with secondaries last Summer, have had six rounds of taxotere and avastin and am now on maintenance avastin. Nobody has told me how long they think I have left, and I haven't asked. The only thing my consultant said to me a couple of months ago was that he thought they might be able to keep me going for some time yet. Some days, I really don't believe it, I feel so tired and worried about further spread. Other days I feel relatively optimistic.

It's a real rollercoaster having been told you have secondaries - well actually more like one huge drop - but I think the drop for me levelled out after a couple of months and I realised that I just had to keep going. My kids are 17, 15 and 10. I feel so angry, for my ten year old especially, and I do try consciously to create lots of happy memories for her because I just don't really know what may come, and when it may come.

Counselling can be very useful - I have had a fair bit over the six years or so since my first diagnosis. Other things I have found helpful are to visit the local hospice and find out what is on offer there - they are not just for people who are in imminent danger of death. I have helped to confront some of my fears by going along to some of the events there and that's where I get my counselling - they really do know what they are dealing with and don't beat around the bush with me (which is something I have always found a trifle irritating with some of the talking therapies). I attend a fatigue group there which gives useful advice and have regular massages, facials etc there which help me to relax and feel pampered. My kids have also had some support too and the hospice is currently planning some art sessions for children of women who are suffering from cancer.

I have also found that getting practical things sorted out has been very therapuetic - in the early days of my secondary diagnosis I planned my funeral, wrote my will and put together a memory book for my kids. Hopefully these things won't be needed for some time, but it helped me to come to terms with the fact that I am mortal.

Please, please don't beat yourself up for how you are feeling right now. It is natural to feel this way - life has suddenly taken on a whole different colour for you and adaptation is hard. The chemo is also going to knock you for six. Rest assured that there are lots of us here with kids who share your worries and can support you in the best way we can.

Deirdre

ForumMember
Member

Re: Anyone in my position?

Hi Susan

Like everyone else I'm sorry you have to join us. I was diagnosed with breast cancer and liver and lung mets just over a year ago. It is devastating and heartbreaking and I don't thing I'll will come to terms with it properly. I had chemo, EC at first which made me very tired and had mixed results, then herceptin and taxotere which made me even more tired but I did get through it. I'm now on capecitabine (aka xeloda) which is very manageable and I'm still here, feel fine and am back at work full time and enjoying it.

The way i get through it is to find things to distract myself as much as possible. Denial can be very useful That's not possible all the time and at first it is very hard. I give myself space to be sad but only for a time. Then I do something I enjoy and try and have a normal life and laugh and joke as I used to.

It is a cliche but you need to give yourself time to adjust. I found counselling arranged via the palliative care unit at my local hospital very helpful and did a lot of relaxation and other complementary therapies. There is support out there and we are all here for you. This forum has been a lifeline and a retreat and great for advice, support, kindness and lots more.

Best wishes

Laura

Guest user
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Re: Anyone in my position?

Hi - i was diagnosed with bone secondaries last May, a month after my primary diagnose. I am waiting to have confirmed whether it has spread further to my chest. I too have a son of 8 and am desperately scared and worried about not being able to see him grow up. I had Fec last year as well as Taxotere. Make sure you have plenty of anti sickness tablets. I also got GCSF Injections which helped and it meant that I never had to have a chemo delayed or missed
Every day is different -some days I want to scream and shout at the unfairness of it all. But most days i try not to look too far ahead and live for every possible second that i have.
Perhaps you could join us for secondary chat on tuesdays? There are a lot of us who try to join the chat and its really helped me through some black times
xxx Jools

Guest user
Not applicable

Re: Anyone in my position?

Hi Susan,
sorry you have had to join the club that none of us want to be in, but we all rally round to help each other as and when we can.
I was diagnosed with liver and bone secs in May 2004 so it is coming up to 5 yrs an anniversary I am determined to make. As the others have said there are lots of different treatments to which we all react very differently so when in doubt just log on and we will all let you know our experiences. I had fec for 6 months after which I was treatment free for 18 months and life got back to the new normal which I soon adapted too.
Take care.

Love Debsxxx

Guest user
Not applicable

Re: Anyone in my position?

Hi Susan

Just wanted to add my support i was dx May 06 I am still hear fighting I have been on Xeloda. My children are 19 and 23 it makes no difference as to their ages I dont want to leave them. We are all very good actresses on this site and I think we all deserves oscars.

I hope you can find some support here.

Best wishes Beli x

ForumMember
Member

Re: Anyone in my position?

Hi Susan

I know exactly how you are feeling at the moment as do many people on here. It is such a shock to be told news like that. I was dx March 08 with mets in liver, lung and lymph nodes at first dx. My children were 16, 10 and 7. But I had a course of FEC (6 sessions) and my mets have shrunk and are now stable. As Nicky says you feel rough for 3-4 days and then pick up again before the next FEC.

What I am trying to say is that I was also told I only had months to live but I am still here and I am feeling quite well at the moment.

It takes a long time to sink in.

Hopefully you have friends and family who can support you and take any help that is offered,

best wishes
Caroline

nicky08
Community Champion

Re: Anyone in my position?

Hi Susan

It is devastating to be told you have mets but I gained alot of strength from this site when I had my dx in April this year. I have just finished (sept) 6 x FEC so know how awful you feel right now. I hope you get some good results from this treatment and then the follow on treatments are good for you as well. As the other ladies have said there are many treatments out there so please don't give up hope. Going through FEC is pretty rough but get as many anti sickness tablets as you can and try to rest if possible as you do get tired - not easy with young children though. Use this forum to sound off, moan, ask questions, get support as that's what it's here for. We all know what it's like - the diagnosis and the treatments - so you really can 'talk' about any of it to us secondary ladies - unlike close family and friends who won't know how you feel unless they've had treatment as well. Please stay in touch and let us know how you get on. By the way after each FEC I felt rough for 3-4 days, then picked up from day 5 or 6. After that I really did feel fine and carried on as 'normally' as possible. I hope this is the case for you even though you won't feel like things can change at the moment.
Take care
Nicky x

Guest user
Not applicable

Re: Anyone in my position?

Hi susan

I am 31 and diagnosed with secondaries earlier this year, after very good primary diagnosis nearly 4 years ago now. I too have had no symptoms of the cancer, although had to suffer the side effects of the treatment to keep me that way. Unfair - absolutely and utterly. I have often wondered why me, why am I on this side of the statistics, who doesn't in our position.

Jane gives good advise - as always - I have had to learn to know what support is best for me, and how to cope the best I can. Sometimes I do, sometimes I don't, (although those around me love to tell me how well I cope, it turns out I must be a v good actress). There are many treatments, and many women who live with this for a long time, and with that, there are times you can still enjoy yourself, even though right now, it will seem like that will never be possible, I know.

Feel free to PM me anytime.

Take the best care you can.

x KS

Guest user
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Re: Anyone in my position?

Dear Susan

I was diagnosed in Nov 07 with secondaries in the liver an bones and coming up to a year living with this. I wish none of us had to join this awful club and I think I have some idea how you feel as my son is older but he really needs me as he is disabled....its awful. I had no idea i was ill and went along reasonably happy to a normal check up only to find this out. With hindsight I could have picked it up a few months earlier but I really think it doesnt make any difference - now its about the oncologist finding a treatment regime that works...the good news is that there are ALOT of options out there and they can stabilise the cancer and or shrink it, and that the regimes can be suprisingly tolerable. I am a year into this crap and I am still working (which I suspect is easier than looking after young children) and leading a relatively normal life.

If you are having really bad side effects from FEC speak to your medical team, they can tweak your dose or give you more effective drugs to take for side effects...dont be shy. There are also alot of women here who are very supportive and knowledgeable and we even meet up from time to time which is both a good laugh and really helpful as you dont have to pretend everything is fine and you can spend some time with people who understand what it is really like.

As to unfairness ? what can I say i? its the pits and I often think about this...there is no answer there,

take care
cathy

juliet66
Member

Re: Anyone in my position?

Dear Susan,

There are many ladies on here that have no symptoms. Dont worry that you should have known. Why should we even have to think about it. It is so sh..
I was 34 when first diagnosed and my daughter was 3. It was so hard doing the day to day stuff and going through all this. It still is.
I was diagnosed with secondaries in April. I am now 42. I have been blessed with extra time, but it is just as hard especially thinking about my daughter.
There are many wonderful ladies on here that can give you the benefit of their experience and knowledge. People who wont tell you to be positive all the time and people who can tell you that it is perfectly normal to scream, cry, rant and rage at the total unfairness of everything.

Guest user
Not applicable

Re: Anyone in my position?

Hi Susan

One thing you are not...you are not pathetic. You have just been told one of the most devaastating things whch anyone can be told. I imagine you feeling scared, angry, numb, terrified for yourself and your children.

I am much older than you and in a different position with my cancer...but I can tell you there are...very sadly..many other women who use this site in a similar position to yourself...young, with young children and a diagnosis out of the blue of secondary breast cancer. I knwo some of them will reply soon and that will help.

For now I would say try to gather as much help and support around yourself as you can..use BCC services, ask to be referred to local services for support and counselling (if counselling is something which feels tright for you), gather your family and friends to help you in practical ways now as you start chemotherapy.

You would not be human if you did not feel really down...as though stuck in the worst nightmare. But feelings do change, perspectives change, awful as your news is, there will be times when you feel less awful than now, when you will enoy things..if in a different way than before this devastating news.

Cancer is certainly not fair and you have the unfariest end of the lottery...take good care and take all the support there is to help you through this tough time. And when you a re ready you may find that finding out as much a spossible about the kind of breast cancer you have,will help you feel more in control and have more understnading of your range of treatment possibilities now and in the future.

best wishes

Jane

ForumMember
Member

Re: Anyone in my position?

Hi there
Just wanted to give you hope as I had BC + liver mets in 2002 and I am now into my 7th year
It hasnt all been easy but I am still working and fighting
So dont give up hope as there are so many different treatments out there and 1 will be good fgor you
Luv jANE

Sam_BCC
Member

Re: Anyone in my position?

Hi Susan

Welcome to the forums, I am sorry to read of your recent diagnosis. Whilst you are waiting for the other users on the site to reply with their experience you may find it helpful to give the BCC helpline a call. Here you can share your fears and concerns with one of our trained members of staff who can offer you a 'listening ear' as well as support and information. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.

I hope you find this helpful.

Kind regards

Sam
BCC Facilitator

Guest user
Not applicable

Anyone in my position?

I am 32 years old and was diagnosed with Breast Cancer in Sept 08. Have since had full Mast and nodes removed. Had follow up scans and found that I have secondary cancer to Liver and lungs.

I have 2 children aged 8 and 3 and am absolutely terrified of leaving them. I've been told I could live for 12 months to 5 - 6 years depending on how my treatment works. I've just had my first lot of FEC this week and am feeling pretty bad already.

Feeling really down and wondering why this should happen to me when I need to be here for my children. I know it sounds pathetic but it just doesn't seem fair. I've had no syptoms that the cancer had spread not felt ill at all.