Hi there

Im sorry to hear about your wifes diagnosis. Although slightly different, my wife was diagnosed with metastatic colorectal cancer five months ago. We were infomed by our oncologist that they would get my wife started on chemotherapy asap and mentioned palliative care but was not curable. That was the start of it but I wanted to know more as couldnt just leave it not knowing anything more, although my wife didnt want to know anything else and said she wanted to take it one step at a time.

I stayed behind, looked at the initial ct scans and asked questions such as prognosis, stages of illness, support amongst other things. Palliative care is basically for pain control, maintain quality of life and extend survival (think thats what it was anyway). My wife cant have surgery due to the amount of tumours around her liver so palliative care is only option and think he said when chemo stops working they may try injecting radium beads into her liver to try and shrink tumours but again, wont cure it. The prognosis wasnt what I was expecting at all and devastating but each case is different and oncoligist said it all depends how aggressive the cancer becomes and every case is completely unique.

For us it is now a waiting game and just find the whole situation daunting and frightening but somewhow have to carry and fight on. The best advice I can offer is to write down a few questions you want answers for, leave some space for some notes and go and speak to your oncologist, ask the questions and write it all down. Thats what they are there for afterall. I found it so helpful and still read over them to try and get my head round it all.

I even thought of more things to ask later on, and again, he answered them as best as he could.

Another thing which is what I keep being reminded to do, take care of your wife but equally important...take care of yourself. Stay strong!

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.

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