i’m struggling big time with all this. can’t stand the uncertainty, hate the waiting for scans to see if this chemo works or not, so so sad seeing cyber friends die and realising how real this all is, hate seeing my little boy (4 years old) so unsettled and unhappy and confused when this should be such a lovely time in his life, hate losing my temper with my kids and my husband, hate it that no one understands - hate it when the cashier at sainsburys says ‘how are you today? hope you’re in good health’??? - find it soooo hard when friends talk about when our kids are teenagers, so sad that I don’t have energy to look after my kids properly - don’t have any headspace or time for me but want to be there for them as I won’t be there forever, so want to make the most of it now but it’s just all too much.
Hi Hannah,
Know we had an email chat a while ago - sorry to hear you are struggling! You are not alone. I have now asked my Sec BC Nurse for some counselling as like you, struggle to get my head round it all and wondering how I am gonna live whatever time I have left, with this black cloud following me around. I know if try to talk about it most people say ‘well no-one ever knows how long they have’ but having a bit more of a definite sign like Sec BC is just not the same as not knowing anything!!! As you say, when anyone asks me how I am (who don’t know!) you feel like shouting it from the rooftops - on the other hand, I just want to be ‘normal’ again!!! I, like you, hate it when I lose it at home cos I just want to be that lovely mother, wife, sister, daughter - and I’m so not! You are not alone - not that that helps I know. X
I have no answers for you. Just wanted to let you know that you are not the only one.
Us secondary girls all have days, weeks, months, years (if we are lucky)feeling this way.
Take heart that you are not on your own and to try, if you can, to take things a day at a time.
Have you been on secondary live chat, we would love to speak to you!!
I know it is annoying when people remind you of things like this, but it is the only way i can cope.
Count your blessings, you have children, some cant. Think about random natural disasters Haiti and the like, or sudden random events like natasha richardson and the skiing accident.None of us know the moment.
Sorry if i annoy or irritate you in what i have said. I hate it all too, but we have to find a way to live with it.
julie x
I’m sorry to read you are struggling. As Juliet has mentioned in her post below, we do run a live chat session every Tuesday evening from 8.30 to 9.30pm and every Wednesday day time from 11.30am to 12.30. Here you can talk with others who have a diagnosis of secondary breast cancer in real time on line. BCC also have many other forms of support, I have added the link to web page giving details of the services specifically for secondary breast cancer:-
hi hannah,
I can completely understand how you are feeling, and dealing with all this with no energy is really hard. Things that have helped me include seeing one of the social workers at my local hospice for a time for some informal counselling.She also put me in touch with a play therapist who works with children affected by their parents cancer. My little boy, now aged 5 didn’t see her, but I got some helpful advice. I am not in contact with the hospice at the moment, but knowing those people are there helps.
I also took early retirement, and although I still miss work, now have some time do little things for myself, like having a massage at the local cancer suoport centre and learning to play the piano. I still have days when I really struggle, and I know people talking about their childrens future always really get to me, but I also have days when i am happy.
Take care,
nickyx
Hannah and everyone else, the only thing I can add is to keep reaching out and talking to others stage 4. I have made friends here who I meet and keep in touch with and there are others who I keep in email contact with. They have been my lifeline over the last 6 years.
With Love…xx
You are not alone in this - we all do from time to time, apart from which if i recall, you havn’t long since been diagnosed, which is an awful lot for anyone to get there head around. Lots of women have trouble coping with their kids when they don’t have secondary breast cancer, so please don’t beat yourself up.
I confess I never did find natural disasters or others problems very comforting, what i did find reassuring is knowing that others in the same boat had lived and were still living 10 years +.
The person you really have to focus on now is you - so go book that facial or whatever ‘me’ time means to you. I hope you are in receipt of DLA now so maybe use that to employ a cleaner to take some of the weight off.
Also as Belinda has said - keep using these forums and reach out, and think twice before you turn down someones offer of help.
You take care Hannah - i hope to see you on live chat
Hannah, just echoing what all the others have said and thinking of you - we really do all have times like this, I promise you. I seem to spend at least half my time living in a state of denial - I know it’s not ideal for everyone but it allows me to carry on living normally for as long as I can. I also hang on to as many stories as I can find of people living for years with mets - the latest I’ve found on one of the US sites is a lady with numerous mets who is doing really well 17 years on from secondary diagnosis.
Echo what Celeste says, make sure you have plenty of ‘me’ time whenever you can - not easy with small children, I know.
Hi Hannah, I too have days of despair but also have times of complete denial and I am now 18 months from my secs diagnosis. I have no small children and feel it must be hard for those of you coping with young families but look for and hang on to the stories of Ladies who are doing well years down the line.
Its important you have plenty of ‘me time’ as others have said, easier said than done with small children and keep using these forums, they have been a lifeline to me.
Love Lesley xx
I think we have to accept that we all deal with this individually.
We can only offer you the benefit of what works for us. For me, the disaster thing helps to put the ‘why me’ thing in perspective.
I am personally not very good with denial. The little voice and internal monologue gets the better of me. I am still working and try to live a normal life. I am not giving up and I too look for stories of hope.
Hannah you will learn what works for you. We can tell you all the things that might help and you will make sense of them in your own way.
My heart goes out to you. I find it hard enought it must be so difficult with a youngster who needs your constant care.
I must admit that I have told no-one (except hubbie and cyber friends) about my secondaries diagnosis and it is my way of coping. I just want my life to continue as normal for as long as possible and like all of us I look for inspiration from the wonderful women who post on the forum and have coped with this diagnosis for a long time. When I am having a bad day I remeber the last time I had a good day and know that feeling will come around again.
I echo what everyone else has said and difficult as it is try and get some time to yourself to switch off.
I so know what you mean about coping with the children and tiredness, I have a boy of 10 and girl of 7. I desperately want to spend quality time with them and for them to remember me as a lovely mum but instead I find myself nagging them for leaving their clothes on the floor, never wearing anything more than once, making a mess and leaving it for me to clear up etc etc because as my bone mets are giving me problems and I walk with a crutch and am on strong painkillers, I just find housework such a struggle.
Just as others have said, you are not alone in feeling as you do and in time you’ll come to realise that we all do really well just to carry on leading a normal life whilst living with this awful disease.