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

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

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

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.

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

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

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

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

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

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