Hi OMG. I am so sad to read your story, I was in a similar situation with my husband who unfortunately passed away from pancreatic cancer just last week. I'm only 36 and have 2 children. When we first found out he had it we asked many different people about a time frame and about chemo. We were told 3-6 months and he got just 3 (obv a different cancer)  we were told that palliative chemo could add 2 months onto his life but before he could get that he needed a stent to get rid of his jaundice, unfortunately he took an infection and passed away a week later. Was it an oncologist that you spoke to? I think they would be able to inform you although they won't know exactly the time frame. My husband and I had spoke about chemo as it can affect people differently. There is always hope and I found that even though we were in this awful situation that we had to try and stay as positive as possible. inhope this helps you a little bit, I totally understand what you are goi g through.  Thanks 

thanks for the replies, it's just a bit hard for me to watch her go through this and not being able to do much for her. her first chemo session was ok as she didn't have many side effects but the second session she had has been worse as she's being sick every day (she's on her 3rd different anti sickness tablets) and not able to eat much and even when she does eat she'll just vomit it back up again a few minutes later, she has spoken to the chemo nurses who have spoke to her consultant and they told her to try to take 2 of the stomach lining tablets to try and stop this, her next chemo session is tuesday 17th nov and they are reduceing the strength of the chemo this in the hope she won't suffer as bad this time. 

Hi - I was interested to read your post because I am going through something of the same with my husband, We have been told the ONLY option is more chemotherapy in an attempt to shrink the lung tumours but that there is only a 20% chance of this working. I feel that, after 10 years of various surgery/chemo/radio and really 'dark' times, we need to know what the eventual outcome will be (although in our minds we know) I have arranged a consultation with the oncologist and have been asked to write down anything we need to know. I want them to be totally honest with me in preparation of what to expect - time span, prognosis, palliative care etc. but feel scared of asking the questions !! I think my husband will refuse to listen but personally feel I need to know. Tell me, was your wife in the interview with your oncologist? What type of questions did you ask?  Did you give her the results? How did you cope with the responsibility? I feel awful having to ask you but I feel 'alone' with my feelings and unable to speak to anyone. At the same time I have to keep my husband positive and upbeat. Many thanks

Hi mo - I was told the same. That my wife would be on chemo but the cancer will eventually become immune. When that day will be, ive no idea. The most worrying part. They say to carry on as normal but how can you? I understand you wanting to know more as we, as the carers, have every right to know as much as we want to. It doesnt just affect the person with cancer but also the family. My wife outright refused to stay in the room when I had a list of questions ready for our oncoligist. She just left me there and have to respect her decision i suppose and is probably one of the hardest things ive ever had to do. I asked questions like, likely prognosis, treatment options available (cetuximab was one also but due to the mutatation of the cancer it just wouldnt work, sadly). Also asked about side effects, how long chemo would keep working, would she likely to have to be hospital for periods of time, how long after all treatments have been used, would the cancer progress and how quickly it causes the detoriation (that depends on how agressive cancer is), what stage the cancer was and how far into the stage it was, how long was she likely to have had advanced bowel cancer, when did it get to the advanded stage, what support me and kids would during and after and a few others. I was also informed me it would be genetic so my children would be at threat but reassured me they would be checkec at the earliest time. Felt like someone had just taken a sledgehammer to my life. Basically told, the aim of palliative care is to stem any pain, symptoms and prolong quality of life and extend survival. Every person is completely unique so it just depends.

How did I cope? Well, I did it and was a wreck in that room. Couldnt hold back the tears. I aswell as making the decision to tell her dad and brother and my parents and sister. After all, they have a right to know. As im writing this im still in knots as am not coping with it very well. Its all I think about all day long, the cancer, life without my wife, preparing for 'the day' etc. I just can not stop thinking about it and like you, dont want to talk to someone about it. Just our own ways of dealing with things I suppose. Just how I deal with things.

Hope this helps in some way x

Hi - You have just written my thoughts into words !!  It's so dificult, I know but we have to keep going somehow for the sake of our loved one and the rest of the family. Sometimes I feel useless - I want to take the pain away from him and make everything OK but I've got to the stage where I know this isn't possible so I suppose I'm trying to be more practical now ! Your answer was very useful and I've added a few more questions to my list when we see the oncologist.  Let's hope we can achieve what we are aiming for (whatever that may be) Thank you for responding - it's good to know there is somebody feeling the same as me.  Take care of yourself and those you love x

my wife and her mum was in with the consultant at the time, my wife suffers with panic attacks so when the consultant handed her the bits of info including the piece with what treatment she was getting on she freaked out and gave them to her mum who has them, from other letters we have recieved it has also said what type of cancer she has and what treatment she is on (but i have kept that from her as she doesn't want to read it). i'm more interested in the words they have used like (paliative chemo) as from things i've read this isn't a good thing. her consultant has said that her last 2 sessions of chemo are shrinking the tumours she has and has also been told after her 4th she could be doing maintenance chemo (which i know nothing about). i am also torn between this quality/quantity and quantity/quality thing as i want my wife to be able to do normal things and not be so sick from the chemo all the time. i am doing my best to look after her and also to sort out daily things for my kids.

Hi - You sound as if you are doing all the right things x It's just my husband and I at home now and I don't know if that is a good thing or a bad one because I have to cope with things on my own with nobody else here to help. Our daughter has her own family and is finding it difficult too but we try and support each other. I just think this is a 'secretive' disease and kept 'behind closed doors' from the outside world. As you can imagine I feel quite lonely and sometimes, when hubby is having a really bad day, don't speak to anyone. TV is a good distraction !!!! Keep up the good work and thanks for your reply. x

Firstly - I am so sorry to hear of your loss Linda.

Hi generally to Mo and Greeneyedman and Omg .....  this is kinda a general question - i empathize with how you and your families are coping trying to deal with a partners incurable diagnosis. As an 'incurable' patient I would be really grateful if any of you and/or the nurses/moderators here would answer me one question based on what I have read on this thread......

Are you saying that your partner's oncologist and treatment team will discuss all the full details of their disease with you without your partner present even though they have made it perfectly plain to all concerned that they do not want to know this information. Also give you a patient's written notes to read and keep?  Or has your partner given their full (and written) permission for you to have access to all this info and to discuss their case without them being present and without knowing the details of a proposed conversation about them and what info may be imparted to you?

I hope I am misinterpreting what has been said because I would be mortified to think my oncologist would even dream of talking about ANY part of my illness or treatment with another person unless I had discussed this with him first and given my permission. I would also not dream of seeking this information if my own partner were in my situation and didn't want to know the ins and outs. I would respect their wishes totally. I would not as one of you has said, feel that I had every right to know as much as I want to from the oncologist dealing with my partners care. It's one thing asking a professional if you could maybe given some guidance when they may feel you are at a stage where your partner is needing someone with them to keep them safe, but quite another to ask all the other questions mentioned here.  How undermining! Your partners idea of quality may be miles apart from your own and maybe they would go through gruelling treatments for even a 1% chance of living an extra month.  We are all different.

I really am confused as I was under the impression that medical information was 100% private to a patient and that the treatment we receive was an "I" decision and not a "we" one where my family have any influence whatsoever.

I look forward to hearing some clarification and send you all the best at a very stressful time. X

hi max

thanks for your comments and understand where you are coming from but my case isnt where i have gone behind my wifes back. i was with my wife getting the diagnosis and asked the second time if we wanted to ask anything. i had already spoke to my wife the evening before and she said she definately didnt want to know anything else but respected that i did. as a father to two young children i need to know exactly all the information so i can best prepare for everything. when the next day arrived, our oncologist asked about questions and my wife told him that i wanted to and granted him permission to do so so she went back to waiting room. had she not granted me permission i wouldnt have been happy but at same time would have respected her wishes.

hope that makes it a bit clearer for you.