As your name suggests, please dream away those horrible fears of death and desolation. We are all here as one big family and you can take comfort from this. How are the little ones coping? are you still working? Thinking of you.
Thank you DippyKate for your trouble and time in setting out all those helpful and practical things in your post. This is the first time I've posted. I have been reading the posts on this site since Christmas when I was diagnosed with further secondary spread, and I have been so down. I was originally diagnosed 12 years ago when my youngest was born. I am on my own with 3 children and identify so much with what all you lovely ladies say. My lovely lady onc retired recently and I have been put in the hands of a new chap and I've told him I don't want to know the prognosis at this stage - I find it better to not know, and the posts here are making me realise that women can live longer than expected and as you all say, no oncologist can actually predict when your time is up. Sending everyone hugs,
It is always terrifying when first diagnosed with primaries, traumatic when diagnosed with secondaries. After all who thinks this is going to happen to us - not me for sure.
I think for me it took a long while for the penny to drop in some senses, a lot of disbelief and shock and then of course barginning and grieving.
Everytime I hear other women say I've been here for * years, I admit it makes me more hopeful, and I do believe I will be a survivor - whatever that may men when you have a terminal illness. I also know that that can change very quickly.
I don't believe that having a positive attitude makes you live longer, but i do believe it helps you live more enjoyably, and so I do. My glass is half full and rising - but that is not always the case.
Stay well and take good care, and go on holidsys
Sorry for not getting back to you all sooner.
Just wanted to say thanks everyone for all your positive feed back and advice on this subject. Once told, I had visions of going down hill fast, but you all seem to be having a "normal life" - That is reassuring in it's self. So I am making plans to do more travelling once this lot of treatment is done.
Seems like a positive mental attitude is going to go a long way in getting us all through this.
DippyKate - You are an inspiration to me, thank you for taking time out to respond. It is really very much appreciated. Your advice and tips on coping, benefits, who to ask for help to fill in the paperwork and advice on memory boxes (my daughter liked that one), have helped greatly.
I now have a mountain of form filling to do. I should get my blue badge for the car today. Also found out that I can get a disabled bus pass that allows a carer to travel free. This will be great for getting to and from hospital appointments. If anyone can think of anything else I haven't claimed for, let me know.
I do however; I still think someone out there should have a standard list of benefits we maybe entitled to. Therefore saving us trawling to the different departments and having to explain our prognosis to all and sundry - Not a pleasant experience when you're still trying to get your head round it all.
Thanks again everyone and good luck to you all.
I too have had sternum mets 4 years ago now! and its fine. I have since had regional recurrence in boob (april 07 -had bilateral m) and also then lung mets and t4 vertebrae in spine in nov 07) i have only had radiotherapy on spine (one zap) and on arimedex and bondronat and haven had chemo and am doin fine - am still working and live life as normal.
so please dont give up yet there is plenty of time ahead!!! think positive!!!! 🙂 and keep fighting!
Re the original post!
Just wanted to say that I was diagnosed with three sternum mets and one to right lung - three years ago. Now I am very well and still working.
So a diagnosis of sternum and lung mets does not have to mean you have only months to live - far from it. There is still plenty that can be done and if you find a treatment that really works for you it can carry on working for a long time.
I was diagnosed with brain mets 3 weeks ago. It's been the longest 3 weeks of my life, not helped by the fact that this all happened 1 day after I moved house so I've been in shock and without my beloved broadband and I can't find anything.
After I heard the stats I thought I'd be a goner in a few days. A few days later I felt like I'd be lucky to make it to the end of the week. After a week I thought maybe I'd see the end of the month. That's what shock does to you.
I wasn't sleeping at all well either, waking up at 4 am like a startled rabbit caught between the headlights of a Juggernaut. So I went to the docs to talk about anti depressents and sleeping pills in case I needed them. I've got some just in case but haven't used them. I preferred the "a glass of red wine is just as good" advice. I've personally found that and using "rescue night" has worked well on me and OH (rescue night's by the same people who make rescue remedy).
I'm not shaking now, and not as scared. Am planning my wedding in 5 weeks and things I want to do, maybe try the same.
I also had MacMillian around yesterday who are going to help me with paper work for DLA etc and things like getting second opinions. You might like to talk to them if that suits you better. I really like the guy I saw and we talked about what it's like dying from cancer and actually a lot of preconceptions I had are very very wrong and it doesn't have to be that way so let yourself get past the fear.
Gotta go shave my head again now back later.
about 3 weeks ago i was told i had secondary breast cancer in my liver.
it is such a shock i have a husband and a six year old boy. the thought of not seeing him grow up is almost unbearable.
but i am going ahead with chemoand that sems to be working.
all that i have read here from you brave ladies is inspirational.
just wanted to say thanks.
Here's a link to the 'talking to children' publications you have mentioned in your post:
Feel bad didn't answer sooner as would like to put my perspective in but as usual have written a book rather than a reply so probably it is more appropriate that I haven't responded before.
I was told I was incurable in Sept 06 and may live only 3 months to 2 years. They don't like to use the word 'terminal' as really you are only at that stage when you have run out of treatment options and your disease is still progressing. It is a term that the 'general public' understand and so I think that is why it is still used. Often the term 'advanced' or 'palliative' is used instead in medical circles. When we were applying for secondary schools in oct 07, my onc was very reluctant to use the word 'terminal' but said if he didn't the schools didn't take much notice.
At that time of secondary diagnosis, I had widespread lymph system involvement in all my lungs and was so breathless I couldn't make it up the stairs without several stops. I also couldn't lift my left leg due to a huge bony secondary in my left hip/pelvis plus another one at T5 in my spine and a small one in my liver and one in my armpit on the previously unaffected side so it looked grim. My children were 6 and 9 at the time and as there was so little help available to them, my onc refrred me to the hospice which was a shock but the best thing he could have done. I got allocated a hospice nurse who could help us with the benefits/grants side of things and visits at home to discuss my psychological needs as well as my husband's, a social worker for the children and also the physio and OT for my mobility needs.
I started chemo and bone strengtheners straight away and by the 3rd dose was not breathless at all and could lift my left leg and walk normally.
I know when we were first told I had secondaries I couldn't sleep and wandered around crying and in a daze and all I could think of was leaving my children behind, my funeral and how my hubby would cope and spent a lot of time trying to work out ways of leaving memories for my children.
The junior and now secondary school have been really helpful and my children have had access to a counsellor there and to the emotional literacy support assistants (ELSAs)who they can see whenever they want to. Not all schools have ELSAs but it is worth finding out and getting help from them.
On the old site, there was a section of useful publications for children - not sure where that is now? Hopefully, the moderator will read this and point you in the right direction if that feels the appropriate thing to do now. There are many leaflets and books and in this forum we did have a special live chat evening about talking to children when you have secondary bc and they did draw togther a list of useful resources = or am I dreaming about that. I know I did a podcast about it around Jan 08 and some more of it was broadcast a few months later as well.
Usually children know something is wrong and know when you are lying so it is putting it in a way that is understandable for your child and using words they understand but at the moment you have no idea how long you will live for (no-one does) despite what the oncs say and only you know whether it is right or wrong for your children to say you may not live to see them grow up or be vague and say your cancer has returned and you're treatment for it now.
With all the media attention about Jade Goody, I'm sure they are aware of cancer and that it can kill so you may need to explain it in a different way and talk about that.
As far as I understand it, when you are diagnosed with secondaries you are entitled to the higher rates of disablility Living Allowance (DLA)for personal care and mobility under the Special Rules. This sounds frightening as the form says you are not exected to live for more than 6 months but then says it will be reviewed after 3 years but it is not income related or taxable and you can claim it whether you are working or not. Claiming under The special Rules means you don't have to fill out realms of paper asking you questions about what you can and can't do for yourself. You need a sympathetic GP or Onc to complete it for you and from memory it is just to confirm that you have a 'terminal' illness and you just fill out your name, address and what bank account you want it paid into. If you are working and getting child/working tax credits you need to tell them about getting DLA as it actually inncreases your money you get from them which surprised me.
Once you get the DLA, you can apply for a blue badge from your council.
There is so much to think about when you are given the news that you have secondaries especially if they are giving you such a poor prognosis but as you have read, many women were given poor prognosis but are still well or relatively well quite a few years down the line. Until you start treatment for these secondaries how can anybody tell how your cancer is going to respond - often they respond well but for some of us, it doesn't but I've had an amazing 2 and nearly a half years since being told I've got 3 months. Yet, I know others have died before me who were given much better prognosis than me - bc is so unpredictable.
I think it gives you a wake up call to get your affairs in order but everyone should do that anyway - think about the people killed in bomb blasts they had no time to prepare anything so to a certain extent you need to be practical and make sure things like your will is drawn up but that is something we all should have done when we reached adulthood but seldom do.
There are so many different places to go for advice and help but don't be afraid of using the hospice service - they do rehab and have excellent resources - often complementary therapies and counselling and can give advice about different charities that can help you do fun things as well as providing practical things like grants.
To go back to practacalities, then maybe discussing funeral arrangements isn't a negative thing to do but another of those things we should have tackled at reaching adulthood but never got round to.
Charities like Winston's Wish give advice, support and information about a whole range of things to do when a parent/adult has a serious illness - like memory boxes and there are 'memory' books which are sold through places like Amazon which are marketed as a social history tool rather than something to be filled in when you know you are ill.I actually quite enjoyed filling mine in as it brought back lots of childhood memories and surprised me by how much society has changed.
There is also advice about the 'hard and horrible' things like writing letters to loved ones but do things a step at a time and enjoy each day you have.
At the moment, from this thread it sounds as if there are a lot of you who have just been diagnosed with secondaries and my advice would be to ensure you have support from family and friends for practcial things like housework and childcare so if the chemo makes you feel bad you have assistance.
Make sure your partner feels included and has access to advice or somewhere where they can work out their feelings - mine has built a patio, redesigned the garden, rebuilt the morris minor as ways of coping and dealing with his anger.
Make sure your children are supported and the school knows what you feel is appropriate.
Do some practical things like your will cos we all should have done that regardless of illness.
Apply for benefits and grants.
Make use of charitable organisations
If you feel you want to speak to the hospice or MacMillan service you get a referral
If working, you are covered under the Disability Discrimination Act so find out your rights
Most importantly, make sure you get plenty of treats and do things you want to do. Put yourself first - women are not good at that especially mums
Have plans for the future - I could only plan a month ahead and even that felt risky after secondary diagnosis but you need to have something to look forward to
sorry - have written an essay but this subject is close to my heart and you read very little about the practicalities and help around is often very scarce.
Moderator - please feel free to edit or move my answer and tell me if I've been inappropriate. I'm sure we all worked hard at getting a list of resources together for those with secondary bc with children
Everyone else - please feel free to PM me, if you feel I can be of any help and please let me know if I've been inappropriate.
I really hope I haven't scared any of you but wanted you all to know that although so many of you are in a black hole and so recently diagnosed with secondaries there is a lot of support and info here on site and bc is such an unpredictable disease, no-one can tell you how long you have.
A rather Worried Katex
My Onc told me that whilst I cant be cured I could have a good many years ahead of me. We agreed at my request, we wouldn't discuss prognosis/expectancy etc. I prefer not to know but will find out if i think I need to. My onc also told me terminal was a term they used for paients they weren't treating anymore pretty much as Petals says.
When I was told I had secondaries in my liver I was told I had a 'terminal prognosis', but as yet not a 'terminal illness'. Basically as long as I'm having treatment to try and keep it under control it's not a terminal illness but once there are no more treatment options then it is terminal.
Ultimately it probably all amounts to the same thing but it makes me feel a bit better.
Also Kookaburra please don't give in to the whole 2 years thing. I was given an average of 2 years in July '07, I had chemo until November '07 and since then I've been on Femara and my quality of life's been pretty much the same as pre-diagnosis. I was expecting to be at death's door by now. If you look on here there's lot's of people who pass the timescales given to them, so just try and keep positive.
Do give the helpline a ring the staff here will be only too happy to talk to you about this and support you as much as possible. Calls to the helpline are free 0808 800 6000 lines open Mon - Fri 9am - 5pm and Sat 9am - 2pm.
Can I join in?
They gave me 2 years last wednesday.
Got mets to the spine and lungs after being diagnosed last oct with breast cancer - Don't know if being triple neg was a contributing factor.
Shock to the system and it's been an emotiomal rollercoaster of weekend telling my family & friends after being released from hospital Saturday.
But what now? Apart arranging my funeral.
Could do with some practical advice on benefits that can be claimed -There doesn't seem to be list anywhere that I can check off.
Any advice at all right now would be a great help to me.
Just don't know where to start now.
Thanking you all in anticipation of your helpful advice.
I have put for you below the link to BCC's publications on secondary breast cancer and hope that some of this is useful to you. You are also welcome to contact the helpline if you wish and have a chat with the staff here who will be able to talk to you about secondary breast cancer.
Publication links: http://www.breastcancercare.org.uk/server/show/nav.714
I hope this helps, kind regards,
sorry to but in on this but I have a question. if you have secondary does that mean you are terminal.I have secondary in liver and lung and although I know that I will never be cured I didnt class myself as terminal.But what I have just read then I am terminal.any comments
well thank you for your support, it shocks me how many people out there are going through so much, you are all brave valiant people, i have so much admiration for you all, and strive to be like you, i am here to fight hard, and live as normal as life as possible, i will look into more support, i just have to learn to adapt and work with what i have at this time, once again thank you from the bottom of my heart, god bless you all 🙂 x
Some of the other women have already given you lots of good advice. I was diagnosed with breast ca and lung mets nearly 2 years ago and now have a sternal met aswell. Am currently feeling very well despote the odd down day that we all get. Please ask yor GP or hospital to organise some more support for you-in my expereince the breast care nurses don't offer much to people with secondary cancer, but I ahve used my local hospice in the past mainly for help with getting DLA sorted out-you are entitled to the highest rate- and for psychological support. This forum has also been a lifeline for me, although I haven't posted very much as have been working up to recently.
Take care of you self
Hi Dawn, I am so sorry to hear of your secondary diagnosis. I was diagnosed with mets in both lungs in Nov 08 as well as mets in the pleura, the chest wall lymph nodes and a large tumour sitting between my lungs. Anyway, I was extremely poorly at the time of diagnosis, very breathless and a horrendous cough but the difference after even one cycle of chemo was noticeable. I have now had 4 cycles of Taxotere (out of 6) and feel really well, the difference in my symptoms is unbelievable and the CT scan at the half way stage showed a reduction in all mets. Do you know what type of chemo you are getting? I really hope that you have as good a response as I have had. I also have Herceptin as I am HER2 positive and will be commencing hormone therapy once my chemo has finished as ER+ to try to keep the cancer at bay for as long as possible.
I must say that I was extremely scared when I was diagnosed. To be told you have an incurable cancer is the most frightening thing I have ever experienced and the thought of leaving my gorgeous 11 year old son was almost too much to bear initially. But is has got easier and whilst the disease is becoming part of my life, I now feel able to get on with living life and hope I am able to do so for many years to come.
You take care and let us know how you get on
Like Belinda says there are lots of us here who continue to live with secondary BC for some years after diagnosis. I was diagnosed with liver and sternum in Feb 03 and I am still here and living a good quality of life. Once the shock of your diagnosis lessens (it will!) then you can start to take control and make more demands of the hospital team for help and support - your local hospice (you do not have to be at death's door for their help) can assist in all manner of ways, emotional, legal and financial, Govt Benefits information such as DLA (Disability Living Allowance) and help etc so ask to be put in contact with them and the Macmillan nurses as they have lots of expertise you can tap into as well.
Life has no guarantees I know but hang in there.
welcome and it goes without saying how sorry I am that you have to join us.
It will be 5 years in May since my secs were diagnosed to liver and bones. I have outlived several guestimates so fingers crossed. Have they said which chemo you will be on? There are plenty of threads on here that you may find useful but if in doubt just shout and one of us will be along to help.
My children have grown and flown the nest but it is still sad if I allow my self to think of the things I will miss. So I try not to visit that dark place, but it is never far away.
I am 44 and just been told i've got bone mets. I have 2 children. I can't offer you any advice cos i am new to this too but you are in my thoughts x
Hi Dawn..like everyone else I'm so sorry you have to join us. I've been terminal with bone mets for over 5 years. Many of us here are doing well, with all types of secondaries. I hope your chemo has worked well. I understand the feeling, despair, of being left to palliative care but palliative care can bring good results. You will find much support and friendship here. Take Care, Belinda..x
I am sorry to read you're having such a difficult time at the moment.
As well as the support you are receiving here you may find it helps to talk to someone on the BCC helpline about how you are feeling. Here you can share your fears and concerns with one of our trained members of staff who will offer you a listening ear as well as support and information. The number to call is 0808 8000 6000 and the lines are open 9am to 5pm, Monday to Friday and 9am to 2pm Saturday.
BCC also have other support available which you might find helpful, for information just follow this link:-
I hope you find this helpful.
Sam (BCC Facilitator)
Hi celticdreamer, so sorry you've had to join us here and can completely understand your fear of leaving your children, being a single mum myself. I have bone mets but not lung mets but I know there are other ladies on here with both and I'm sure they'll be along to help you soon.
Sorry you feel you've been let down by your treatment from the medics - I have to say I don't have that feeling at the moment from my team - there are a lot of treatment options out there for most people and I'm sure your medical team would be concerned to hear you feel this way.
You'll get a lot of support from everyone on this forum, I promise!
I can genuinely emphasise with you. I am a mother of two young and wonderful children and the thought of leaving them is what hurts me most about my situation. I still feel the shock and remember my (wonderful) onc sympathising with me when she told me of my own secondries. I hope that your chemo is as successful as it can be and encourage you and yours to fight and push for guiadnace and care that helps you best.
With love and hugs, Lea X
hi, i am a single mother of 3 beautiful children, i am 40, i thought i had beaten my breast cancer 3 years ago but have just been told i have sternum and both lung mets. has been a real shoock for me being told im now terminal, they are trying 3 months chemo for symptom contol, i dont know if anyone else feels like this but i feel i have been dumped at home to die, they gave me opiate drugs and monthly check up dates, thats it. i have great support from family and friends, i just dont know what i should be doing and how soon? i am still working, i just know i am very weak and not who i used to be, can anyone show me some light at the end of the tunnel, or give me some advice please, i am so scared of dying and leaving my children, sorry i dont mean to moan, i know all you laides are going through the same things, i just want a miricle i sopose! thanks dawn.x