Adjusting to a new life

Hi, I'm new here. I was diagnosed with Warthinlike Mucoepidermoid carcinoma in May. Had the tumour,

half the salivary gland and some lymph nodes removed. I've got facial palsy where the nerve was damaged. Can't Close one eye. Can't smile. But I don't have anymore cancer. 
Thing is, at the moment, I'm a little lost. Like I don't know where I fit anymore. I feel differently about everything. And it's difficult to explain to people. It's almost like I need to do a factory reset on myself. 
I know it's really common to feel very different after an illlness- and not just when it's left you looking very different. 
 

I suppose I'm wondering if anyone else has found themselves almost having to reconfigure who they are? 
 

LJ 

xxxx

  • Hi LJ,

    So sorry to hear what you're going through. 
     

    Im afraid I don't have any advice but I just want you to know you're not alone, I feel exactly the same way. I was diagnosed with breast cancer earlier in the year and have now finished my active treatment but I'm finding life harder now that it's "over". I don't feel like myself anymore, I'm not sure who that is and I'm finding it hard to for back into my life. I also find it very hard to explain to people. People just expect you to be fine now that the cancer is gone but I feel like life has irreversibly changed. I'm trying to work out the positives and what I want from life now and as a result of that my world has gotten a little smaller but that's ok, I think we just need to take one day at a time.

    Just remember there are people who get it and feel the same way. 
     

    Sending hugs xxx
     

     

  • Hi LJ,

    So sorry to hear about your facial palsy, that's tough.  I feel exactly the same if it helps any and can't imagine just being me any more.  They say it's a new normal (like Covid) after cancer.  There's a good article to read online that a nurse sent to me.  It's called After the Treatment Finishes - Then What? by Dr Peter Harvey, a Clinical Psychologist.  It's easier being around others with cancer as they just get it.

    I guess we'll find our way again but it might just take time.  I'm not done with treatments just yet but already feel quite different.  It's a whole lot to get through so not surprising it changes us. It's not like recovering from an illness at all.  

    I saved a meme to my phone.  When something bad happens you have three choices.  You can either let it define you, let it destroy you, or you can let it strengthen you.  And I hope it's the third option we all go for.  This is a life changing experience but I think it also teaches us a lot about life.  And how very strong you can be.  

     

     

     

  • Hi gracemac

    im 6 years out of  breast cancer 

    dcis and idc mastectomy reconstruction 

    I think I coped well I had just retired when all this hit 

    I didn't need any other treatment 

    I had some bone strengthening infusions for 3 years 

    lm now recovering from squamous skin cancer 

    Has wide incision in my and leg skin graft from my hip

    I feel like I have been in an accident so sore everywhere

    im feeling very upset angry maybe even depresssed

    it's the whole why me thing

    nobody seems to understand my partner and family just expect me to bounce back 

    I'm 70 this year I was slim fit and mobile 

    now I feel very old 

    the stress is awful I had good results good margins don't need any other treatment 

    had to go private because the waiting times to see a dermatologist were so bad 16 week had passsed 

    and still a possible 10/16 weeks to wait 

    I see other people sailing through life I'm glad for them wouldnt wish this on anyone 

    my partner is a good man but doesn't get how I'm feeling my sons have there own things going on 

    I'm not sure what to do I have to rest as the wound is ion my shin and very difficult to heal 

    it looks horrible I know it will heal but just now I'm finding everything such an effort 

    im pretty sure cancer will get me in the end 

    I don't know how to get out of these feeling 

    Joanie B 

  • Thank you so much for replying. I'm sorry for everything you've been going through. What a terribly hard time. 
     

    it's a strange feeling to try and navigate isn't it? I was ok last week. Exercising, thinking positively. Then this week I've had my oncology check up and appointments about my facial palsy me I'm reliving it all. But I have five years of these appointments so I need to find a way to let them get the better of me. 
     

    I think you're exactly right. One day at a time. My husband says to go with the feelings. To people on the outside, the 'all clear' seems to means you're ok. But it's that feeling of, 'all clear for now' and how do I find a way to accept who I am now. 
     

    small steps. I'm sure that as we get further away from the trauma, the less it will emotionally hurt. 
     

    sending love and best wishes 

  • Hi Joanie B

     I'm sorry you're feeling so low. I think these feelings of anger are perfectly reasonable and understandable. All my anger is channelled at my GP who told me the lump was nothing to worry about. Thee times. Without my dentist- who knows where I'd be. 
       Life sends out some horrendous blows sometimes and we've been unlucky enough to be on the receiving end. 
    I too have the fear about it coming back. Have you read up on things you can be doing? I don't know how effective they are, but it gives you a sense of control- which cancer takes away. So I'm dunking myself in a freezing sea a few times a week, throwing tumeric into drinks and meals and have knocked alcohol on the head completely (never drank much anyway). I'm forcing myself outside each day. Some days these things don't help at all, but some days they do. 
     

    My friend who had breast cancer two years ago tells me it's having to get used to living with a shadow. And I guess the thing we need to tell ourselves as often as we can is that we're still here. 
     

    sending love and best wishes