Hi everyone,
I was dx with secs to my liver/lungs two weeks ago and started Xeloda yesterday. I just can’t seem to come to terms with this mets dx and all I can think about is that my daughter is only 4 and will be without a mother. Does it get easier? At the moment, I just want to curl up into a little ball and never face the world again.
Hi
I am so so sorry to hear that you have had this diagnosis and I can’t imagine what you must be feeling like. I have secondaries but not to my knowledge in lungs or liver and I don’t have any children.
So, the best I can do is to bump this message up to the top of the latest posts and hope that you get some replies asap.
There are lovely people here and I hope you will get some comfort from here.
Anne xxx
Hi doylej
I’m sorry you’re feeling so down - it’s such a shock for you and it will take some time to come to terms with, but you will get there and it does get easier in time. I have bone mets, no spread to lungs or liver as far as I know, but there are a lot of ladies on here with major organ spread who are doing really well. I’m sure they’ll be along soon to give you some support. I’m not on Xeloda myself but I know that a lot of people here are getting great results from it.
Take care
Lesley xx
Hi doylej
It has been such a short time for you. I’m not sure anyone ever does ‘come to terms with’ living with a secondary/terminal diagnosis. But in my experience feelings do change over time… the intensity changes, perspectives change, new kinds of hope replace the hopes we have lost.
I am a good deal older than you and don’t have children…I think it must be draedful imagining your child’s future without you.
There will be times when yes you do want to curl up in a ball and want it to stop hurting and then days of joy again with your daughter.
There are so many women with young children on this forum and I reckon everyone helps each other in wonderful kinds of ways.
Jane
Doylej, I’d also say that I fully understand the fear of leaving your child - mine are older than yours at 11 and 12, but I’m a single parent, their father is virtually completely off the scene and I have no siblings or other family members who would be in a position to take them on. I think in a way this stops any thoughts I may have of giving in, it’s not an option so I don’t think about it - this may be denial but it’s the only way I can cope with it at the moment.
Lesley xx
Hi Doylej…2 weeks is such a short time…it took me a couple of months to get over the shock of my diagnosis…somehow we do all seem to find a way of moving forward…it’s not easy…I found meeting, talking to others with mets helped me and using this forum to…I didn’t feel quite so alone. Love Belinda…x PS…Good Luck with Xeloda, I’ve been on it a year now.
Hi doylej
I second what everyone so far has said on here. 2 weeks is such a short time, there’s no way I’d even started to get my head around all of IT by then. I did feel more able to cope when I started chemo however, so I hope that you also will get some good results from this and gain hope that you, along with many other ladies on here, continue to live a full and active life. My 2 daughters are late teens but it was still difficult for them, especially as they understood more than when I had my primary dx. It’s worth seeking some help if you need it so you can speak to someone on a professional basis about yourself and your fears. We all have them, I just shut mine in a box most of the time:-) I also found great support on here and, again, felt I wasn’t alone on here whereas in my ‘real’ world none of my close friends have even had a brush with BC let alone had to deal with secondaries. I think that last weeks’ news of 2 of our lovely members who died hasn’t helped any of us as it brings back to us our own mortality despite the fact that we all wanted to support them and their families. Take care
Nicky x
Hi doylej,
I, like you was dx with lung and possible liver secondaries about two months ago, so I know excactly what you are going through.
Once I started capectabine I started to feel a lot more positive, like Nicky, I try to put my fears away in a box and try to enjoy my life.
Also, like Jane new hopes replace the ones we have lost.
I am much older than you, so, I suppose it`s easier, although I would so love to see my wonderful grandchildren grow up, maybe I will, we must have hope!
Take care,
Love,
Jan x
Hi Doylej,
Like others have said it’s completely natural for you to feel in such a state of shock and have the fears you are going through. It’s such early days for you. I do think the passage of time does help. I remember being in total panic when my husband left while I was still on chemo and I was in total panic and used to make a list of all emergency numbers I needed - terrified I’d be taken ill on my own and felt in a rush to plan my funeral and sort everything out - I keyed in all important numbers into my phone and felt the wieght of the world on my shoulders. I can only say that I suddenly though to myself the other day that I don’t know what I’ve done with the list I made and I haven’t thought about planning my funeral for a while and I guess I realise that at the moment I feel more confident that I’m not going anywhere yet! Like you my secondaries were diagnosed in my lungs as well as lymphatic system but as I said in a previous post to you the last 2 successive scans since November have been showing no evidence of actvie secondaries at the moment. The fear doesn’t completely go away but I definitely feel so much more positive that things can get better and the chemo I was on really worked for me at that time.
I hope the same will happen for you. The sheer terror definitely faded for me. It’s not easy and you need to be kind to yourself and get as much support and opportunity to open up to your true feelings.
I don’t have children and so can only start to imagine what it must be like for you but want to give you hope that it really does get better. Thinking of you
Anne
Hi doylej,
I was diagnosed with primary breast ca and lung mets 2 years ago, and have a son who’se 4. i remember clearly the huge shock and despair i felt. but as time goes on, you do learn to cope with it , and have good days as well as bad days. despite having a very supportive family, I also found it useful to speak to someone outside the whole situation-sometimes its god to be able to be completely honest without worrying about upsetting those close to you- i saw a social worker at my local hospice for a few months and also spoke with a child support worker. I don’t see them now but know they are there if I need them
This forum is also very supportive and knowledgeable.
Take care,
nicky
Hello doylej,
I found the early days/ months after secondary diagnoses really really, really tough.
It does get better as time goes on.
I was diagnosed with secondaries in bones and lungs in June 2006, it was an awful time and I wondered if I would ever be able to think about anything else other than the cancer. For me, it never quite goes out of my mind completely BUT it is easier for me to cope with now.
There was a while after secondary diagnoses when I felt like I was in a big black hole and I would never come out. But with the help of my freinds (some of which i met on here) and my family I did come out of the back hole and am now doing well.
Of course I still have my wobbly days but dont we all.
I know it is a cleche, but I take each day as it comes. I will worry about the future when I am there.
I also found my hospice a real help. I was really worried before I went there as I thought hospices were for end of life care only, they are not. They are also a great help and support for people living with cancer. And that is what we are, we are living with cancer. This forum and all the freinds you make on here will also be great help. I have some other secondary breast cancer ladies that I chat to on msn and they are also a great support.
No one can understand quite like other people in your situation.
take care
Fayjay69 x x
Hi Doylej
I think the beginning is really really tough too. I have posted on your other threads before, and have children of the same age as you, and that is my fear of leaving them too.
I hid myself for about 3-4 weeks when first diagnosed, and then slowly starting getting back into routine for the kids and once treatment started it did become easier.
I dont think you ever really accept your dx as such, and I still have some very bad dark days, when I despair and wonder why this has happened, and why I was given 2 beautiful babies only to be taken from them early.
It does get easier, although some days are tough, and I get emotional too. But I just take each day as it comes really like Fay says, and enjoy my children and try to do as much as I can to make memories with them, although I know that at 5 and 2 they probably wont remember that much.
Anyway, hope things start to settle down for you and you start to regain some “normality” back.
Take care
Love
Dawn
xx
Hi Doylej
I agree with Jane, this is a transition time, everything gets chucked up in the air, and comes down different. It’s not the end, but it certainly is different.
The trouble is with this period is no sooner have they told you then they usually start you on chemotherapy, and although we all react differently to chemo, no-one feels better on it, just varying degrees of worse, and all in a very good cause. So we usually assaulted on two levels emotionally and physically. I cannot think of another area of one’s life when this happens.
As everyone has said this is early days and wouldn’t it be odd if you didn’t feel like this. Please do accept all the help and support you can get.
Take care
Hi Doylej - such a hard time for you - i was diagnosed sept 08 (bones,lymph and liver) and still have some very bad days but also have some good ones - i try to find spaces where i dont think about it ( total distraction) my nephew ( 3 years) is good foe that, hobbies? ( I make mosaics) and things that absorb you - reading? TV ? or my nintend ds - might sound a bit trite but i find anything that switches off the voice in my head helps…jayne
Hi Jayne, nice to see another Nintendo ds ‘addict’ on here! Mine definitely helped me switch off last year whilst awaiting for my treatment plan (after secondary dx) and also when I was on the ward for my chemo. A real help and can recommend them to anyone as a way to get the brain involved with something other than BC all the time. The BCN’s were quite jealous as several of us had them on the chemo ward and could while away many a long hour whilst the BCN’s worked and couldn’t justify playing on theirs when they got home. You do have to look at any positives that come along and the fact that no-one was going to tell me to do anything I didn’t want to during chemo was one of them. Hope you are dealing with your situation doylej but please come on here if you need any more support or information.
Nicky x