I know how you feel. My Dad diagnosed with this awful cancer back in April. Some days I just feel numb about it all. Please keep asking questions any getting information about what the next steps are for your husband. Just try and listen and support. I know I've been surprised by support from people I've not heard from a very long time while others I'd thought would be more in touch nothing.  I did have a call with a nurse the other week partly for my own sanity to check all that I was doing was right. I guess with all this going on there are no rights or wrongs it's just taking each day as it comes. 

Hi, 

I hope you don't mind me replying here. I've found myself in the same position as you. My dad has just been diagnosed as well. At least T3N1 and its looking like it may have spread to his thigh, which I've read online (medical journals) doesn't have a good outlook. Its sounding like its advanced. I am absolutely heart broken and I don't know what to do. I am so consumed by it all that day to day stuff is difficult. For example, I am meant to be working right now!

I know what you mean about being numb. I am mostly numb, and if I'm not numb then I'm sad and crying. 

We are just waiting for more tests and scans before finding out what the treatment options are... if any... 

I wish there was most I could do. Its a lonely and helpless feeling isn't it. 

I understand nothing you do or say to anyone seems to help. I'm having a particularly bad day usually doing a bit of work helps distract me not today. I find the conversations are getting more difficult even though its the same things being asked. I spoke to one of the hospice community nurses earlier today so hoping more support by way of my dad talking to others will help. Hope you get the answers to the tests you are waiting on soon and can move forward. It does feel a dark lonely place for those suffering and supporting even with people around you  

Sorry to hear you are having a particularly difficult day. Work usually helps me too, for a while, then my mind drifts off to dark places. Perhaps taking a little break from work to clear your head or have a little cry will help? I like to take my dog out for a walk across the field so I can cry away from everyone else. Then I can properly ugly cry! ha

Can anyone call the nurses or does it have to be done with your dads permission? I'm not really sure who I am and am not allowed to talk to. My dad says he is being open about it all with us, but he's not the type to ask any questions at all so he has no answers. I'm not going to the appointments with him either, my mum is, and she's not the sort to ask questions either and wouldn't remember the answers anyway. 

Thank you for taking the time to reply to me. It's nice to talk to someone who is going through the same thing at the same time. 

Hi SH85

I am so sorry that you find yourself in this situation.  I was the same when my Mum was ill in the run up to being diagnosed with secondary breast cancer.  Mum couldnt remember what was said in appointments and Dad was hard of hearing and just overwhelmed by it all.  I felt like I was constantly questioning them trying to find out information.

In the end, I just came out and asked if they would mind if I attended the appointments instead of Dad, I said that I wasnt wanting to push him out, but I was better able to take notes and therefore follow up with telephone calls etc, if required.  It turned out that they were both really relieved that I had asked as they both felt really out of their depth.  Then each time we met a new nurse or consultant, I made sure that they wrote it in their notes that Mum gave her permission to discuss her medical details with me. It made it alot easier when I had questions that needed clarification.

I wish you all the best, I know how hard it is to be so scared for a parent and to feel so helpless.

Annie

Hi SH85

I am so sorry that you find yourself in this situation.  I was the same when my Mum was ill in the run up to being diagnosed with secondary breast cancer.  Mum couldnt remember what was said in appointments and Dad was hard of hearing and just overwhelmed by it all.  I felt like I was constantly questioning them trying to find out information.

In the end, I just came out and asked if they would mind if I attended the appointments instead of Dad, I said that I wasnt wanting to push him out, but I was better able to take notes and therefore follow up with telephone calls etc, if required.  It turned out that they were both really relieved that I had asked as they both felt really out of their depth.  Then each time we met a new nurse or consultant, I made sure that they wrote it in their notes that Mum gave her permission to discuss her medical details with me. It made it alot easier when I had questions that needed clarification.

I wish you all the best, I know how hard it is to be so scared for a parent and to feel so helpless.

Annie

Thank you Annie. Maybe I should just be upfront and ask them if I can go along as well!?

I'm glad that your parents were willing to have you attend the appointments. It sounds like it helped all of you to understand and deal with the situation much more effectively. 

It's certainly worth a try, worst that can happen is that they say no, but at least they will know how much you care and want to help.

It really did help me and them, I was able to hit the phones and get things moving and made me feel like I was helping.

Good luck!