I got really bad news today. Basically Vinorilbine has now worked after 5 cycles. The tumor in my liver is now 8 cms with a lot of new tumours forming. Basically I have no real options left and my Consultant was pretty blunt in saying that I have only months left. My hubby and I are heartbroken and had to break the news to our 2 beautiful kids one of 13 and 7. The only chemo option is one called Liposomal Doxorubicin and he said that it only has a 1 in 10 chance of working and it will only give me a couple of months and this will have lots of crappy side affects and he thinks it will destroy my quality of life. Where do I go from here, I always knew that death was down the line but never thought it would be so soon. How do you prepare for death? How do I live now knowing that my life is fading away. I dont want to be really sick i think I have suffered enough with this last chemo being my fourth. This is a very scary place to be and I feel so scared and helpless I have no control. I love my hubby and kids so much. Sorry to burden everyone but I need help! I am 38 years of age and I was diagnosed nearly 5 years ago.
My heart gos out to you and your family. I am 44 with liver secondaries and a son aged 13 and a husband as well, I can imagine the pain and heartbreak that you are feeling. Have you sought a second opinion from another oncologist ? There may be other options or something else they can do. I am sure other people will come on with suggestions along this line,
Can your GP refer you to a hospice now - I hope that doesn’t sound awful - but I have had some help from the hospice people already, talking to them and organising things. The can help you medically and personally…I have talked to them quite a few times now and its difficult but helpful,
I am so very, very sorry that you have had this terrible news. I do not know how you prepare yourself for the coming months, only that you will be enveloped in the love of your husband, children, friends and family. You are not alone.
My hope for you is strength and peace.
I am sorry to read your news Cheryl and just wanted to say if you feel it would help to talk through how you are feeling please call our helpliners who can offer you and your family support and information about other support you can access during this difficult time. (0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm)
I’m so sorry - in a similar place to you but have had more time to prepare for my death.
I’m 46 with twins of 11 and a boy of 8. I was diagnosed in april 05. I’m on my last chemo option which is not doing as much as we’d hoped. I was told sept 06 I may only live a few months but am still here. We told our children gradually that my cancer was spreading and then got onto the part that I will die soon. We have had lots of support from the hospice nurse and the hospice social worker. Also our junior school has specially trained learning assistants that have specialised in children’s emotional needs and they have ben very helpful.
Lik Cathy said I would ask for a second opinion. I’ve had FEC, taxotere, vineralbine,capecetabine, gem/carbo and now weekly taxol. For me the tiredness and diarrhoea are worth it on taxol for the extra time it is giving me so I would be tempted to ask for a second opinion and ask about the epirubicin (its been altered I think to make it less cardiac toxic) or other drugs around.
How do you prepare for death? That’s quite a personal thing. For me as I love writing, I’ve written memory books for the children and hubby and letters to them all and other memebrs of the family. I’ve made memory scrap books and boxes and used winston’s wish little cards to put in which say why I love them and am proud of them. I’ve done a synopsis of my life including all the daft things you do as a teenager/student as I never met my hubby till I was 31 so have a ‘history’ he is not always aware of!!!
You’ve just been given this news your GP, maybe your BCN - mine are usless but we have a macmillan centre who are brilliant as is the hospice who I’ve been seeing for 2 years now.
If you have a religious belief then they can help. Macmillan helpline can help and so can the helpline here.
some people cope with their impending death like me who are such control freaks that i have lists everywhere for my hubby and then you get other people like my dad who just didn’t want to think about it and took each day as it came and just stayed at home till the end.
Children are very adaptable and do cope really well. When we told mine - they listened for a while and then they decided they would prefer to play monopoly as they like ‘normal’. The school need to know at some point what is happening to you and so does your hubby’s work.
sorry - probably have written too much for you to absorb at this time but as time passes reread it if you feel it maybe helpful or just have a rant at me if you feel I’ve been inappropriate.
Please talk to a ‘professional’ asap as they can listen to you and you can cry,rant or whatever with them and do get a second opinion.
my heart goes out to you and your family and friends at this time.A day doesn’t go by when I shed a tear for the fact I won’t see the end of this year and leaving my children, hubby and family and friends behind. It feels like an unreal dream and one day I will wake up and be told it was all some dreadful mistake (like Bobby Ewing in the Shower in Dallas!!) but then i look at my battered body and know it can’t go on for much longer and it just tears me up.
There’s live chat on tuesday evenings - you should join us at some point and it is very supportive.
Just so sorry
Kate
Oh no poor you. I’m so sorry. I had some bad news a couple of weeks ago (and people on this site were very helpful and supportive) but not as bad as yours. I have been thinking a lot about how much it is worth going through horrible medical treatment for a short amount of extra time so I really feel for you. The fear and the sheer sense of grief when thinking I might have little or no future is hard to bear.
I support what people have said about seeking help from professionals including a hospice might give you some support. I saw quite a few staff at my local palliative care unit over the last few months and they were very clear they are not just there for the end of life, but can really support and guide through hard times and treat everyone as an individual.
Please don’t give up yet. I am sure we are all here for you.
Thanks everyone for your kind words. Dippykate I am going to do some of the things you suggested I am not much of a writer but I will try my best. I have been awake now for hours its only 6.20am now so I have had lots of time to think and think! As for a second opinion my consultant is lovely and would try anything if it was available. I have a CT scan in two weeks and after that I will decided about treatment or not. I felt so good today when I got my picc line out and coming out of hospital knowing I dont have to go back every week no more bloods or chit chat to the nurses. I think I have had enough. But never say never as maybe in two weeks I will say different. As for faith I am a christain and my faith has got me through that last 5 years it wont let me down now. I am going to take each day as it comes and enjoy it and maybe that you Kate I will get a lot longer that the Drs think. Going back to bed now to see if I can sleep I will sign on again and let everyone know how things are going. Thank you all for your kind words.
I am so so sorry. I’m on my last chemo option too, well that’s what my onc said, but have decided they have to keep on trying (thanks Kate). I was in a panic after the results of last scan came in. I started writing the letters to my children and found that although it’s hard to do it also leaves you with a sense of peace. The memory boxes are another good idea. Your children will know who you are and how much you love them, it’s a sense of security. I know how you feel when you say you don’t want anymore chemo. My onc said if the Navelbine doesn’t work she wouldn’t try another one. But thinking about it I do want to keep trying, no matter how much it takes out of my body. Even if it only helps for a few months, it’s a few months longer with my kids and family. Btw, I am 43 and kids are 4 and 3 yr old. I do hope you’ll feel a bit better when you wake up.
Hi Cheryl
I popped onto this thread as your name was mentioned on ‘Prayers in Chit Chat and Fun’ by Ann who was asking for us to pray for you in the decisions you have to make.
I noticed from your posting that you are a Christian and you talk of how your faith has sustained you over the last 5 years.
I don’t know if you have ever looked in on prayer thread but there are people there who are praying for you and would love to meet you.
I am posting the link below .
Much love
M x
I am so sorry to hear your news but would also get a second opinion and keep fighting, never give up hope. I know that’s easier said than done you must be devasted, I am sitting here with tears in my eyes terrified when it will be my tun to face the music like so many others have done on this site.
Have you spoke to your doctor about all the lisenced medicines that are not available on the NHS because he can apply to your trust to pay for these medicines “in extreme circumstances” Well i’d say this is pretty extreme.
My heart goes out to you and your whole family, I hope you find another alternative which will provide you with new hope.
Like you, I was told 2 years ago that I had to get my affairs in order as I had about 3 months to live and I have never known so much fear as I did at that time. I was also told that I could try Xeloda but they didn’t think it would work but I thought it was worth the try.
This threat is still hanging over me even though my oncologist got it wrong then because I’ve been in that very dark and scary place and the emotional side of it I just couldn’t explain to people. I kept thinking ‘this is the last birthday I’ll see of my son’s’ and things like that. I didn’t want to go up to bed by myself because I was scared of the thoughts that were going round and round in my head.
Also, I felt extremely ill and found everything an effort (it’s in my liver and spine and it was my liver beginning to fail) so that was hard as well.
My heart goes out to you because unless you’ve actually been told that you only have a certain amount of time to live you really have no idea of the emotions etc that come with it.
Kate’s advice is spot on and hope that you can use it - but best advice I can give you is to be yourself and just do what you feel comfortable with. I have done the memory boxes for my 10 yr old but stopped at the letters - it’s just not me. Be honest with yourself and those around you.
I have just spent 13 weeks in the local hospice but have now come home and progressing well, so be comforted that the Doctors are not always right in their prognosis.
I don’t have children and am a lot older than you…59…my cancer is progressing slower than expected (regional recurrence which is now causing pain and pressuse on voice box so can’t speak properly). I’ve used up most of my chemotherapy options, but did get a second opinion from the Royal Marsden a month ago…and that really helped me focus on the boundaries of the possible. I was diagnosed witrh primary bc 5years ago too…had AC and taxotere then, and over the last 17 months have done xeloda, vinorilbine, carboplatin, gemzar and now on weekly taxol. I think we each have to make the decisions which are right for us about whether to try another chemotherapy…it is that weighing and balancing act which is so hard.
I don’t know really how to prepare for death though I’ve thought a lot about it…and have scrapbooks on the go, and half written letters. I don’t have much close biological family and have lived quite a varied and unconventional life in fragmented pieces…didn’t meet my current lovely partner till I was 47 so lots of bits of my life are unknown to her and I want to leave a record. I’m not religious so for me this life is it. I only live on in the memories of those I have known. I was a teacher for many years and at times a charismatic one I think and I like to think there are hundreds of my ex students out there who might sometimes remember me fondly and smile. Eevn the ones who didn’t like me! That helps.
Prognoses are very difficult…I think our doctors want to forewarn us but they can never tell for sure. I don’t think contemplating death is necessarily giving up hope…I think somehow we can do both…create new bits of hope for ourselves. But I know thats easier said than done…I know the sad black hole and terrified feeling…even though intellectually I feel lucky and incredibly privileged to have lived longer than so many of you younger women with cancer and young children. Mind you I am incredibly jealous of my well friends who are anticipating lenghty post war baby boomer generation retirements.
I think we give each other courage and practical ideas and that in itself is a hope.
I write this with tears in my eyes for all of you, esp those with children, I just wanted to try to ease your fears but I don’t know how, if I could wave a magic wand I so would over all of us. I live in fear of being told what you are going through, I fell so humbled by you all. Dippykate, you’re incredible.
But remember, altho C may cut our time short, it does not destroy all the good that the world has to offer, you are so loved and you have loved, and you are still loving, not everyone can say that.
Also hold on to the hope, that the Doc’s are giving you an educated guess, but it is still a guess.
thank you all for your support and kind words. Today i do not feel just as bad, its the reality of it all that is so hard. Like christmas and birthdays I might not be there to arrange and enjoy them with my children. My son of 13 picks his subjects at the end of this school year, my heart breaks that I can not advise him etc. I feel for my hubby today as he will be left to sort everything out all the things that us mummys do that know one sees. I have been married for 17 years and I met my hubby when I was 15 year of age, I never had any other boyfriends he is my soul mate and I feels that same about me. How does he put his life back to together again? I wish I could help but this is out of my hands. I sometimes feel angry. As for a second opinion I feel that I dont have to do hospital’s chemo etc for a while and this is a good thing right now. I am babbling on and on but I feel this is the only place I can express my true feelings.
I will write again soon and let you all know how I am doing
Thanks for letting us know how you are. I am glad that you feel able to express how you feel here, there are other ladies who do understand and can be of strength to you.
I have not been able to write here as I do not know what to say. This makes me feel so useless. You have been in my thoughts since I read your message last night.
One thing I do want to say is, other women I have known have made kind of ‘manuals’ for their husbands or partners. I have to say that I have not done this yet but I realise that at some point I should. I would list everything from birthdays to remember, where the christmas decorations are, what the children need doing for a new term, what we need to take on holiday… All those jobs that we as women, mothers and house-keepers (and I mean this in the broadest sense - home-makers, not cleaners…) do.
Just sending you love and hugs and wishing you and your family peace and happiness together. I am not very good with words but I will be thinking of you.
Cheryl-
How heartbreaking your news is…I am so very very sorry that you are going through this. Words are really useless at this point. If we could, I am sure we would each reach out to hug you and let you know that we do care about you.
so {{{{{{{{{{{{{{{{{{{{{{Cheryl}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
I am sure that what you need to do – the most important things – will come to the forefront once this horrible news sinks in. Just trust yourself.
You are in my prayers daily. And know that some very faithful women in the Prayer thread (read that chain) are lifting their prayers up also. You are very loved dear.