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Mesothelioma

Jojo2006
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I don't where to start really. My dad was diagnosed with stage 1 mesothelioma two years ago ( if anyone doesn't know this asbestos related cancer which initially affects the lining of the lung) He had surgery in 2015 followed by aggressive radiotherapy. The cancer he has is biphasic. Unfortunately there is currently no cure for this cancer. He had surgery and although they removed what they could, the Consultant said it would come back. So this year dad started to get excruiating pain and the cancer had reappeared. He did have  second line chemo and that didn't work.  He had an X-ray last week and it showed up something ,so monday he is having an urgent ct scan. He is so frail, I'm not holding out much hope. He is so negative too. I've been so strong up until now but finally it's got to me. Lately I feel like I'm on a rollercoaster of emotions. Yes I accept he is going to die.... but can't face it. He is only 67. I feel that I have no one to turn to really, who understands the complete and utter saddness I feel. It's one of the worst things I have ever been through I think. It's made me feel ill at times. I'm finding the whole thing hard too as I don't just live around the corner,plus I have young children. I'm not exactly sure when my dad will be end stage palliative care, however I feel on tenterhooks all the time worrying about coping. I was a nurse for years I don't think this had made it easier, when it's your own relative it's the hardest thing in the world. I also don't think others understand what you are going through. I think you have to have walked that road yourself. I'm really just looking for support on here really! Just wanted to talk with others going through similar, or get advice from those who have been there xx

  • Offline in reply to Callmeclaire

    Hi Claire

    I really feel for you, it's hard facing it alone. Glad to hear you have some lovely friends.  Please private message me and can offer my support. My brother is far away and also single so he must feel like you. He's also always wondering. Its very tough for you, and I feel for you. 

    Re: Hospice. I'm not sure how it works really, but think my dad was referred by someone at the hospital. I know you can be referred by your GP. A palliative care nurse came out to assess my dad, and talked about the day centre. I felt he really ought to go. I sort of talked him in to it. I know it isn't for some people. He likes it because he can chat to people, he doesn't have to explain, plus they really care. 

     

    Part of of the reason I wanted him to have hospice input is because about a month ago, he was just sleeping all day. My brother came down from lancashire and managed to work out my dad had been overdosing on some medication. He'd been given some anxiety meds which can impact on your breathing, no good for someone with his condition. We managed to get him  to the GP with a list of stuff we were concerned about. Felt after this more support was needed. My dad is with it alright, but just getting totally anxious. 

     

    I know what you mean about plans for the future. You sort of feel in a limbo. We booked a holiday for August, however we may need to cancel dependent on what happens. I came off Facebook as couldn't cope with seeing the 'so called' wonderful life everyone is having. To be fair, it was getting on my nerves anyway.  It's a very tough time. 

     

    Glad you got away to Dublin. I love it there. its great you got away.  I know what you mean about being on edge! 

     

    How much support has your mum got around? Does she manage to do stuff for herself? I think it's hard to get the right support sometimes. I wonder how people cope if they haven't got relatives like us. You can't help worrying. How is your mum in herself? 

    Anyway sending you lots of hugs. 

     

    P.s yoga sounds great. I'm pretty much broken after my gym experience yesterday. I did enjoy it though. I must admit! Xxx

     

     

     

  • Offline in reply to Jojo2006

    Evening Jo

    I added you as a friend and was going to private message but you need to accept me first apparently

    I arrived home last night and can definitely see a difference in my wonderful mum. Her breathing is bad, she needs oxygen after the slightest bit of movement. The shower really takes it out of her and it's so hard to see. I had a good cry with her when I got back, anxiety had been building on the last part of my journey and it hit me when I got back. 200 odd miles of driving definitley gives too much time to think! I can appreciate how your brother must be feeling, it's so hard to feel so torn between your life away from family and being there for the ones who need you. I selfishly didn't want to come home, I wanted to bury my head, but now I'm back I feel a little bit better.


    Does your dad have anyone at home with him? Mum mentioned yesterday that day visits to the hospice have been mentioned, but I don't know whether she'll take that option. She's on a whole load of meds, morphine was added into the mix last night which helped her sleep better. She's also on anxiety meds as she gets panicky when she's short of breath. She has nurses almost daily who are all wonderful. Bloods taken today to check whether she's anemic. And a wheelchair delivered this morning. A month ago she would have point blank refused a wheelchair but now she's excited by it because it means she can get out and about and get some fresh air!

    She's still determined to have control, she can shower herself and is mobile but not for very long periods of time. Mentally she's incredible! When I was crying last night she was comforting me and I couldn't help but think it should be the other way around! A month before we found out Mum and Dad moved out of family home and into lovely little flat in the middle of a forest, mum's dream home, and it has definitely helped her mental health. At first I was angry at how unfair it was that she was finally where she wanted to be and it's all being taken away but now I can see it's a blessing and if they had stayed in the family home her mentality wouldn't be the same as it is now.

    How about your Dad? How old is he if you don't mind me asking?

    I wonder too... we met a lady in mum's chemo last year who had no one at all, no partner or parents or sons or daughters and I felt so so terrible for her. But I've not met one person who is going through this dreadful illness with a negative outlook, it amazes me.

    Anyway... thank you for your replies! I appreciate it. Hope you and your dad are well today. I get through my days by thinking about how strong this is making myself and my brother and sister, we will carry on mum's strength and do her proud! xxx

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