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Coping with being terminal? How?

29 REPLIES 29
Guest user
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Re: Coping with being terminal? How?

I'm with you on this one.... I too am young, 29 actually and have 2 children (babies still to me) 5 & 7...I was first DX when my youngest was 11 months old and for us this has been our life. I was DX with advanced liver and bone mets in Oct 2011 and asked prognosis to which I was told 12-18 months approx...... I was grateful to my onc for his honesty. It enabled me to think of the things I wanted to put in place for my children and appreciate how well I was considering. I've spent the past year having chemo/biological therapy & bone strengthener and to my delight my markers have dropped considerably (although not 'normal')..... I've had a 10 week break and today found out that my markers have doubled which has knocked me. I too get angry thinking of my babies having to live life with no mummy.... It's really unfair. I hate how cruel life can be, but the more I think that way makes me more determined to fIght. I'm no statistic, I'm a person... A unique, one off individual. statistically 12-18 months is right but that's not good enough for me. It's hard, it hurts and I've cried a river today but I won't let it beat me. Thinking of you, and know the place that you are in right now but don't stop fighting xxx
na7asha
Member

Re: Coping with being terminal? How?

Hi there. I was diagnosed with bone mets in June, after a terrible summer I'm at peace. My baby died in May so I feel I'll be joining him one day. I'm in no hurry and I'm not sure I'm helping you here. Guess I'm trying to say you get used to this dx. I have dark days, cried on a colleages shoulder on Friday, but on the whole I'm OK. As everyone else says, we don't have sell by dates, nobody knows for sure. Better you have a friendly onc that will help with the paperwork I think.

Hope you're feeling more positive again, we can't alter the facts. We just learn to live in spite of them.
Hugs xxx
dib
Member

Re: Coping with being terminal? How?

Weepixie,you are truly inspirational and I really hope gem dancer can take some comfort and genuine hope from your post,it will certainly help me and I'm sure it will help others too who arent at the stage which you are at ,at this moment but still fear for their own future,bless you both,
A very humble Di.xx

Guest user
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Re: Coping with being terminal? How?

Hi Gemdancer, we seem to be in a similar place you and I. I was diagnosed stage 4 in April with lymph node involvement and extensive liver and bone mets. At that time before I had any treatment a registrar told me I had 'more than weeks' of course I only heard the 'weeks' part and came home in a panic to plan a funeral and add a few notes to my will. I never dared to dream that I'd see another birthday or Christmas. At that time planning for the end was all I could think to do but I think it's a stage you have to go through in order to move on. I have 2 kids and I couldn't bear that I might have to leave them before any of us are ready. The anger and jealousy of other parents which you express are normal emotions in our situation and I have certainly felt them too.
Since then I've had some success with chemo and my disease appears to be stable for now. I feel fairly well again. I still have days when all I can think about is the end and the things I will never see or do but I have recently found my positivity again and I hope you can do the same. I have taken the rather bold (or maybe totally stupid) step of going back to work a few hours a week and planning a holiday for early next year. I have started to look forward a little more and feel I am reclaiming something of my former life after a nightmare year.
There are so many inspiring stories on this forum that can give us hope. Many women beat the odds and as already mentioned the statistics are by their very nature only a guide and an outdated one at that. You are unique and your disease will be too. I agree that while your onc may be happy to say that for insurance purposes you are considered terminal with a possibility of surviving less than 12 months he may not actually be saying this is likely in your case. My doc was happy to sign a similar form for insurance but also says that he would hope I can remain stable on currently available treatments for years to come. None of us knows the day or the hour, even the most learned physician can only make an educated guess.
Look hard for your positivity but don't beat yourself up on the days you can't track it down. All of us have down days I hope yours are few and far between x
aroma
Member

Re: Coping with being terminal? How?

just a quick message in 2006 i was given 6.9 months ,here i am having beaten it and i had it in my liver and lymphnodes as well as my breast ,ok the treatments wernt nice but worked ,dont write yourself off ,nobody can tell exactly when , xxhugs xxx
VerityC
Member

Re: Coping with being terminal? How?

Hi Gemdancer,
I am SO sorry to read your post. For the moment my fears have receded a little as my treatment to date has been effective, but this time last year I was very scared of leaving my children alone - my husband died some years ago. At diagnosis I was stage 4 and it was terrifying and bleak to deal with. Now I have no evidence of disease. Of course, there is still an underlying fear and I know I am not cured etc, but life for us looks a lot more hopeful than it did last Christmas. I hope amd pray that you will be able to say the same next year.

I agree with others who have already posted very eloquently about none of us having a sell by date, etc. So true! But can I offer this as a thought too....?
You said your oncologist gave you this news when you spoke to her about prognosis because you want to sort out insurance claims. She also said that less than 12 months is normal with such extensive liver mets. It seems to me that she was NOT saying that is all the time she thinks you have, she was saying - on the evidence available etc.etc, that would be normal. ALSO, she was responding to a question about an insurance claim. Insurance companies consider someone to be terminal if it is reasonable to expect that with their condition there is a reasonable chance of them not surviving for more than 12 months. In that, medics can only go on evidence that has accrued - ie in the past, and relating to others.
Could it be the case that your oncologist has not meant to say that she thinks YOU only have 12 months,but that she has tried to answer your question about your claim. I think so. I KNOW none of us even want to think about these things at all, but.....
When my husband was undergoing treatment for cancer I asked his oncologist to help with an insurance claim. My husband was very, very ill, but the oncologist refused.He did not want to give my husband the message that he wasn't going to live. I can see that now, and I think it was very caring of him in a way, but unfortunately ir cost us a lot of money and put me under a lot of added stress when my husband died less than 4 months later.
Thinking of you and hoping you can enjoy Christmas and see your situation improve.
Verity xx

Guest user
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Re: Coping with being terminal? How?

Hi gem dancer and liajon I too am a mummy of small people, a 5 and a 7 year old. They are the only thing that keep me going. I am trying to pack in as much as I can with them. When I think about dying they are all that I thimk about. I know my husband will get through it but I can't bear that someday my babies won't have a mum. I have mets in liver, bone and nodes in my chest. last year the onc said about 5 years which has since shortened since the spread to the nodes in my ches. but I just say to myself that 5 is not my number. On the good days it is easier to be positive. On the bad days nothing helps. I have pretty much built my life around my kids and focus on being as we'll as I can for as long as I can to give them as much of me as I can before I go. No lie, I am broken hearted. I too feel jealous of older people. Absolutely no help at all but I see your pain and I understand it.
pussy
Member

Re: Coping with being terminal? How?

Hi Gemdancer
like all the others my thoughts are with you and i do hope you do not give up your fight i am also grade 4 and though i am not in your situation i was told 2 years i am 9 months pass that now and have seen my daughter married my son and then this year i got my first grandchild and i look at her and hope i will see her grow up i know it is a long shot but she gives me a reason to keep fighting this horrible disease
please try and keep the fight within you for your self and family others who have commented hopefully have given you inspiration
god bless you and your family
fingers crossed things will improve for you
take care
kay

Guest user
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Re: Coping with being terminal? How?

Like all of the above my ear is here with all the others I can only send you best wishes hugs and positive thoughts through cyber world but they are sent to you in buckets full. Angi xxxx
Guest user
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Re: Coping with being terminal? How?

Gemdancer - I recently went through a major scare thinking that I had bone mets but I was lucky and my bone scan was clear. This forum helped me through a difficult couple of weeks and I was so grateful to everyone for their support. I read your post and felt so sad for you and couldn't pass it by. Don't give up hope. I know its easy to say but maybe others on this form can help you through this awful time. My heart goes out to you - don't give up. I wish that I could say something really postive but I just wanted you to know I'm thinking of you and wishing you all the very best. All the luck in the world for the future x
supertrouper
Member

Re: Coping with being terminal? How?

Gemdancer - I read your post today, and for once didn't respond straight away. I am so sorry that you have been given such grim news. The word "terminal" drew my attention to your post. I hope that in your case the end is a lot further away than you currently expect it to be. Like many of the people who have responded to your post, I believe that everyone's cancer is different. And everyone responds differently to the treatments offered. I don't want to offer you false hope but I do want to lift you from the depth of despair. Look up - see the stars - read stories of miracles. They happen all the time!
You are in my thoughts tonight and hope to see many more posts from you x

Guest user
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Re: Coping with being terminal? How?

Hi Gemdancer I also have stage 4 BC and have been living with it for 2 years. I too have hours when Im down about the future and other times when I feel more positive. For now however i'm trying to live rather than preparing to die. I have recently been struck by how transient life is for everyone in the great scheme of things........in another 50 years or so all the people I know will be dead and perhaps its less mportant whether we survive 1,5 10 20 or 50 of them, but the use we make of whatever time is given us.....it doesn't stop me feeling that its very unfair that I should have a life limiting illness however and feel jealous when I see other people who can live there lives without the thought (for now) of death. I am lucky in the sense that both my sons are at uni and more or less grown up but i do have the same regrets about grandchildren etc. I think with younger kids the sadness, regret and perhaps guilt at leaving them would be more intense. I too am rambling but would like to send hugs and best wishes to you.Pamx
Guest user
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Re: Coping with being terminal? How?

Hi Gemdancer,
Ater reading your post I just had to answer. I have a 7-year-old grandson and, as the mother of four sons, I cannot begin to imagine how you are feeling about your boy. I have no answers but echo what others have said about oncs using old statistics to give a prognosis. I wonder if s/he is giving you that prognosis in order for you to get your life insurance payout. Doctors are usually very accommodating in this matter.
I will be thinking and praying for you and hope you feel more positive soon.

Huge cyber hugs, Liz, xx.
Mals970
Member

Re: Coping with being terminal? How?

Hi Gemdancer,
im probably the least qualified to comment in some respects as I don't have BC (3 members of my family do). However I do have a disability and would like to share 2 big medical predictions made about me. One was made when I was born : "if she doesn't walk by the time she is 2 years old she will never walk" And the 2nd when I was 20 yrs old: "you're not ovulating and are therefore infertile- at best you'll need hormones and at worst you'll need ivf if you ever want kids".
i walked when I was 3 and half years old and have been walking ever since.
i have a 4 and half year old son who was, although very much wanted, unplanned and certainly not produced with any outside assistance!
my point? Doctors study a lot to become doctors. They study anatomy, chemistry , cells etc etc in minute detail and then when they specialise - in even more detail. But....
As human beings there is so much more to us than cells, blood, anatomy etc. if there wasn't - let's face it- we would all be very boring as a species. What I'm trying to say is medicine is not an exact science and doctors predictions are just that- predictions not fact. Take care
Mals
scottishlass
Member

Re: Coping with being terminal? How?

Dear Gemdancer, I am sorry that you have been given this news. I just wanted to give you an example of just how wrong they can be when giving survuval times. I needed to ask the same question to decide what to do with lump sum or pension etc. A senior Cnsultant Oncologist told his junior doctor to tell me I had a 50% chance of usrviving 2 years. When was this? Way back in the year 2000. They don't always get the months or years right. I regret wastin my time worrying that this may be my last Christmas/Birthday etc. I can understan how you feel and it is not a nice place to be but you may be one of the luckier ones like me who wil have a bit longer. Please keep posting and telling us how you are doing. We are here for you, to hold your hand, or just to listen whie you open up to your thought. You can be be as frank and honest with us, not something that you may want to shre with your nearest and dearest. I started a new chemo today (Taxol) and may well lose my hair before Christmas. Just try to take one day at a time and try to do the things you want to do. \It is not easy I know but we are here for you. Much love and a hug, Val X

Guest user
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Re: Coping with being terminal? How?

Hi gemdancer
this is my first post on the forum. I haven't got any fantastic words of wisdom but somebody once said about putting the past and the future in a box and focusing on the now. It's called mindfulness apparently. I quite liked it. But blimey, as someone else says we can't be positive all the time. Just last night I was loitering around the In Memory section!!!!!. Carrying around a ticking time bomb. I too have multi liver mets (about 5 at last count I think) and 2 wonderful sons aged 4 & 7. Just the other day i popped out and came back to see my husband putting up the fairy lights around the living room. I sat watching crying in the car thinking he really will be doing it on his own one day.
Just wanted to say I'm thinking of you really. I too asked my onc about my life insurance forms. He said no for now. I was trying to explain to my husband that as much I want the money to do things with the children the day he says yes I know I'll be devasted. i did read about a lady who wasn't given long and was still going 3 years later. There are success stories out there. I spend a lot of time looking for them online!!
big love to you anyway - Lianne xxx
belinda
Member

Re: Coping with being terminal? How?

Hello Gemdancer, another stage 4 and like swanie, Jacqui, I have dealt (well as much as it's possible to) with the burial and practical stuff and it did make me feel it was a few ticks checked off my list and I could then move forward. Be especially kind to yourself, any envy and anger is, I think, completely and justifiably normal...it's too horribly unfair and cruel you are having to deal with this when you're Mummy to a 7 year old. I have days when I'm preoccupied with death...eventually this does pass. It helped me, a little, to try and live in the present, not be overly concerned with what has passed and (the harder part) not to look too far ahead. The only true moment is now, this minute. Not that I will ever fully get my head around this way of living but I've never met anyone else, in the same boat, who has either. We all muddle along as best we can and we need to give ourselves a big pat on the back for getting out of bed in the morning when it's tough. Have a lovely peaceful Christmas, with Love...xx
swanie
Member

Re: Coping with being terminal? How?

Hello Gemdancer = what an awful place to find yourself in. I do have some secondaries but nowhere near as progressed as yours and all my children are grown up and settled with little ones of their own so I know that they are OK. Like Nannie spikies ONC mine will not give a prognosis he believes it is impossible to predict the future, he can only tell me whether things are working well, or not in the present.
One thing I did which has helped me to settle and get on with life is spend a week just sorting out a file which sits in my filing cabinet. I have told my daughter and husband it is there - it is labelled 'In Case of Death'. I have included an updated copy of my will, some financial papers, details of where I want to be buried ( I want a woodland burial) and letters to all I hold dear. Once that was done I felt that I had prepared for the worst - now I can get of with living.
Enjoy life and your little boy - to bady quote someone famous - 'there are lies, damn lies and then there are statistics'. They can occassionally offer some guidelines but cannot tell the truth for an individual situation.
Big cyber hug - Jacqui

applestreet
Member

Re: Coping with being terminal? How?

And me as well...have been looking at your post all afternoon..didn't know what to write but didn't want to end the day not responding to you at all...no one knows what the future holds so as everyone has said...just make each day count..I am not qualified in any respect to give you any answers..what I can do is give you a listening ear..a virtual hug and lots of best wishes to you and yours...apple

Kayteeb53
Member

Re: Coping with being terminal? How?

Hi gem dancer, so hoping that you have support to give you strength. i don't have any answers either, but we are all here to listen when you feel like you need to rant and shout.
hugs and love Kay x
amd66
Member

Re: Coping with being terminal? How?

Gem dancer, i just want to send some virtual hugs, and courage,i dont know what else to write, but like revcat, I didnt want to just read it and go, I hope you have good support around you and i know the ladies o n here are amazing, whatever our journey.
lots of loveAnne xx
Milo1
Member

Re: Coping with being terminal? How?

I am sorry that life is not good for you at the moment Gemdancer, you will find a way of coping,my original prognosis was not very good but my liver mets responded well to chemo although like NannieSpiky mine has grown back in more areas than I started with, I am lucky my son is nineteen so I have seen him grow up I now worry that I wont see him marry and have grandchildren and I have three lovely niece's at whose weddings I wont see and that hurts. On a positive note I make the most of each day and try to have quality time with my friends and family, I don't put things off anymore as I may not be as well as I am in the future. Your consultant can only quote statistics and there are several ladies on this site who have survived their original prognosis, sending you a gentle hug and wishing you the best x
valkeh
Member

Re: Coping with being terminal? How?

Hi Gemdancer,
I have very similar thoughts and feelings very often... And other days i am more positive. Don't lose your faith. Don't lose your courage. I try to remind myself what I worry is to die but if I live a life full of worries it's living death. Live every day as it comes. Enjoy your life. No one knows about the future. Of course we are the ones that probably we will leave before our friends or our family members but who really knows? And why we should live just with apin and despair? It is a very very tough journey but we need to keep figthing girl!!!
Take love from your loved ones. Allow people to be close to you and embraceevery day. I am writting all these with feeling your pain and your frustaration. Life has been harsh with us and we are the unlucky ones. But no one can takes our dreams and our pesonalities. Keep dreaming and fighting.

Send you lots of love
Valia
x x x
NannieSpiky
Member

Re: Coping with being terminal? How?

Hi Gemdancer
Your post made me feel a liitle sad and rather annoyed with your onc that he has put you back into a negative place regarding your prognosis. My onc will not give me a prognosis, thank goodness, as she says everyone is individual with this illness and refuses to look at stats as they refer to a general picture rather than your personal one.
I have bone,lymph and liver mets and before my last chemo I had several liver mets but they responded well to treatment apart from one which is growing again. Now I am waiting for the next stage of treatment. When I ask my onc how she thinks I'm doing she replies that I'm doing very well, all things considered. Maybe she isn't being completely honest with me but she gives me positivity which is so important when dealing with this rubbish hand that we have been dealt.
Don't be too hard on yourself as we all have our negative periods-it's only natural in the circumstances.You WILL pick yourself up again after this 'blip' and I hope that you find the inner strength inside yourself to continue fighting and quietly say to yourself 'stuff your 12 month prognosis-you've got my expiry date completely wrong!'.
Sending you love.
Liz x

Tawny
Member

Re: Coping with being terminal? How?

Hi Gemdancer. I was diagnosed with bone and liver mets in January 2010. I had a course of Zeloda and then hormone therapy which seems to have worked for my liver as now there are no trace of mets (and there were a few - though I never asked how many). Recently, however, I've had a spread in my bones and have gone through a lot of treatment in the past few weeks. I've felt that 'negative' side come back. But it would be inhuman of us to be able to be positive all the time. Although you want to set plans in motion, I believe in trying (stress trying) to live day by day. Oncologists are working with statistics. They cannot predict exactly what will happen. Each of us, and how we respond to treatment, is different. That can be unfair, too. Try not to think about the treatment, nor the pain. These things are not real, they are your worries. I am the biggest scaredy cat in the world, in the past 10 days I've had a blood transfusion, a picc line put in, I've started chemo (IV the thing I feared the most), I've had a bone scan, an MRI scan, got a CT scan next week and I've had 6 separate courses of radiotherapy this year. If someone had told me that I'd be facing all of that together, I would have probably died of fear. But I've got through them...just! I was wondering if you are in contact with a local hospice. Some people are scared of them and associate them only with death but I've found mine (Marie Curie) to be a wonderful place. They are good at helping with alleviating fears. I actually had my blood transfusion there and found it much less stressful than the hospital. However, at the end of the day we are left alone with our thoughts. You have a young son and, obviously, it makes you frightened. All these feelings are natural, somehow through all this we have to live. It's so hard at times, but we must embrace life. Please PM me if you would like. I'm not sure that I've helped, but I do understand. Oh, and not to tempt fate but....in January I will have outlived my original prognosis. So there.

Alison xx

CherryH
Member

Re: Coping with being terminal? How?

My brother (now 74) was diagnosed with terminal liver cancer which has spread to his lungs and no doubt a few other places. Of course, he's 'lucky' in that he's already had a good life. He was given just a few months to live coping with chemo and medication .... but I forgot to say, that was over three years ago! Okay, he won't get better, and I strongly suspect another three years is unlikely, but those guesstimates are exactly that. And for him they've been/are still three good years. Despite my hopeful wishes I do feel so much for you and hope you get the support and care you need. Love MarianneH
mandyj
Member

Re: Coping with being terminal? How?

Hi Gemdancer
Like Revcat I too am not qualified to give advice as not in your situation. I just wondered if you had looked at a website called canceractive and looked at the info Chris Woollams has to say. Its not for everyone as it causes some debate amongst people but I will let you decide what you think. Anything is worth a try.
Look after yourself
mandyj.xxx
RevCat
Member

Re: Coping with being terminal? How?

Hi Gemdancer,
I feel totally unqualified to comment on your thread as I am not in your situation or anywhere near. But how could I read and run?

Your consultant has said 'twelve months' but what does s/he actually know? It's not as if you have an 'expiry date' printed on your back like a bottle of medicine. Hard though it is, try to keep in mind that all stats are based on people treated quite a long time ago (they have to be - five year stats must be people treated more than five years ago and so on; it seems obvious once you know!), and so treatment will have advanced since then. They are probably quite cautious in what they say because they can't know how you will respond to treatment. Please don't write yourself off just because of what they have said.

I think the anger and envy you feel as you look at other mums is normal, natural and, dare I say it, probably healthy - it shows you are not taking this lying down, and why would you not feel cheated just now?

It sounds twee to say try to take it a day at a time, and to fill your good days with things that you enjoy, but that probably is the best I can suggest. Of course you will have 'moments' and 'wobbles' but you are still entitled to enjoy your life with those you love.

Oh dear, I seem to be waffling and saying nothing useful... so just sending a big hug and hoping someone with something useful to say is along soon.
June_BCC
Member

Re: Coping with being terminal? How?

Hello Gemdancer


Whilst you are waiting for support from other users, maybe you could give our free helpline a ring on 0808 800 6000 and have a chat with one of the breast care nurses who are there to support you. Lines are open to Monday to Friday 9.00 – 5.00 and Saturday 10.00 – 2.00.


Best wishes


June, moderator

Guest user
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Coping with being terminal? How?

Hi all.
I am newly diagnosed with bone, skin and liver mets. Lots of liver mets it seems (10 spots). I posted recently for support and found lovely people out there.
At clinic this week, I needed to discuss prognosis because of my life insurance stuff. (want to get money out of them). It was so difficult to hear. Onc says less than 12 months is normal with such extensive liver mets and because I've had lots of treatments already. Has put me back into negative place again. Think I had put myself back into place of denial quite happily. Even though I know I have lots of liver blobs, I had decided to imagine I had a few years left. I think one of you went trekking - gave me inspiration!
On my other thread, I know some of you said you were doing Ok with liver mets after some time. I just need some positive thinking at the moment. Struggling to keep going. I love Christmas normally, but it is so hard knowing this might be my last one!! I cant quite get into the spirit of it properly! Especially, sad as have 7 year old. I want to keep living in the present and not just exist to plan for my death. But hard as I know I will be facing lots of pain and so much treatment. It's so hard to take it all in. Not helped by the fact I watched my Mum die of tisi disease 12 years ago - I know whats coming. I know I could go downhill quite fast.
Not sure what my question is! How do you all keep going? I find I am constantly thinking about death at the moment. Counselling does not help really. I am getting help in thinking about my boy, which is useful. I have good support mechanisms, but they dont live in my head! I look at other Mums with envy and anger. I imagine them seeing their 7 year old become a teenager when I wont!
Sorry...I just seem to be posting the same questions...... it just helps me to do this.
Gxx