Oesophageal cancer - advice

My husband, got diagnosed with oesophageal cancer last week after an endoscopy.  He had problems swallowing for a while and whilst i am grateful for the endoscopy doctor tell us there and then, we were in state of shock, especially when he said things like "established" and "quite large."

Things moved quick and we had the CT scan on Thursday last week and we are just playing the waiting game now.  We were given cards for the team but didn't want to ring on Friday, if we don't hear anything by Tuesday lunchtime we will chase, but we are scared and I feel very very alone.  I've spoken to MacMillian and had a good cry done the phone with them.

We have both jumped to worse case scenario, which I know isn't helpful and I am trying to be "the strong one" when inside I am falling apart.  34 years is a long time to be together (particularly for 2 guys)  and as I keep saying to him, battling to keep the tears back, "our story isn't finished yet"

Friend are saying the right thing by text, but unfortunately they don't translate into action, when I think about how I was there or them at various points in their lives....but now the boot is on the other foot....it hurts.  I've had to limit social media, at looking at people being happy makes me resentful. (which it shouldn't)

There are people worse off than me and ultimately this isn't about me, it about him.

Do these feelings of loneliness, confusion and sadness pass, or any tips on how to manage them.

  • Hi Adquelo, 

    I just wanted to offer you a very warm welcome to the Cancer Chat forum and let you know your post has been seen.

    I'm really sorry to hear your husband has been diagnosed with oesophageal cancer. This must have been very difficult to find out, but I'm glad you've reached out to us, as so many of our members will know what the both of you will be going through right now, so you are not alone, and I'm sure you will receive some support and advice from our community soon.

    A cancer diagnosis can bring about so many thoughts and feelings, and this news impacts not just the person diagnosed but their loved ones as well, so don't be too hard on yourself for how you are feeling.

    I'm glad speaking with Macmillan has helped, and I hope you've managed to get in touch with your husband's team for more information too, but if you'd like to discuss any of this further with one of our cancer nurses, they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very easy to talk to and will do all they can to support you and answer any other questions you may have at this time.

    Do keep posting if you find it helps Adquelo and remember that we will always be here for you.

    Kind regards,

    Steph, Cancer Chat Moderator

  • 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. 

  • Hi there, 

    I'm so sorry to hear about what you are going through. I have found myself in the same position, but instead with my dad. 

    I'm feeling all the things you have described and I'm also sat here hoping it passes soon. 

    I hope your feelings of loneliness, confusion and sadness have passed or at least subsided to a manageable amount now. 

    I hope you get some answers soon. Not knowing what's happening or going to happen is the worst! 

  • 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

  • Offline in reply to annie123

    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!