Feeling alone

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Hi everyone,

I'm really struggling, I have Terminal Squamous Cell Carcinoma larynx. My consultant has said the cancer has progressed and I could bleed out anytime and they won't be able to save me.

I feel so tired all the time and I haven't got much energy.

I have been aspirating on food and drink. I cannot eat or drink anymore, everything has to go through my peg feed now.

I also have other complex medical conditions which cause dislocations and severe pain all over my body. I am in a wheelchair most of the time. I don't go out anywhere apart from the hospital.

I'm so scared of dying, I'm only 51. I feel like a ticking time bomb, I don't know what day will be my last.

I have no support at all. I used to have support from district nurse's, but they don't bother to support me anymore, they told me that they haven't got time. I do have a carer come for an hour in the morning and 45 minutes at tea time, but they haven't got time to talk and I have a different carer every day.

I have major trust issues and find it hard to talk to people. I was abused from being a baby and throughout my childhood and I suffered domestic and mental abuse until I was 34 years old by one of my parents.

I haven't any family or friends. The friends I thought I had have all disappeared as soon as they found out I had cancer. My wife is suffering with her mental health and cannot support me at all. I keep asking myself why am I here? I feel like I'm sitting here just waiting to die. I feel so alone and isolated.

  • I feel so alone and isolated.

    H Summer. I am lost for meaningful words of support  as I feel really out of depth here but I am so really sorry for the fix you are in. 
    I know you posted earlier in the year and I remember urging you to ring MacMillan where you did get some help. 
    I know now you find yourself in a much more urgent and precarious situation. 
    Please give MacMillan support line a ring again. . The number is at the bottom of this post 

    There will be somebody to talk to you there. 

    Do you have hospice care in your area. They might be able to help. It doesn’t mean you have to stay there till the inevitable but a few days being looked after will surely help. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Dear Summer475

    I am so sad to read your post. You should be supported and loved by your friends and your family in such a terrible time. It is crucial that you talk to someone at Macmillan's. I am sure they will be able to listen to you and direct you towards the support you need and should have. I am so glad that you came on here and expressed how you feel. We are all here for you. 

    Sending you loads of love. 

    Fab1

  • Thank you. I'm so used to having to deal with things on my own and find it hard to ask for help. It's taken alot of courage for me to say something.

  • Please never hesitate to come on here and share how you feel. I think that this community is like a large family. We are all here for you. 

    Fab1

  • Thank you that's really nice to know. I really appreciate it.

  • Hi Summer

    I can't say anything other than my heart breaks for you and your wife. 

    Dani's suggestion of contacting the local hospice is a good one.  I've experienced then with both my mother and my uncle who I was primary carer for.  They both found peace at the hospice or at home under their care.  The hospice workers had time for them and made their last weeks and days as maningful as they could.  They are also experts in pain relief.

    I hope you find some peace soon.

    Peter
    See my profile for more details of my convoluted journey
  • Asking for help is one of the hardest things we can do. I am also so very glad that you came on the site. 
    I do hope you get comfort from the forum, I find folk on here are incredibly genuine. I wish there was something I could say to ease your pain, both physical and psychological.

    Please do call the MacMillan support line that Beesuit mentions and seek out your local hospice as suggested by your fellow members. Our Journeys are all different but your anguish might ease when you talk to someone. A call might open some doors and you will get more appropriate care and support.

    If you feel up to it, I (and I’m sure I speak for all who’ve responded to your post) would be keen to hear how you get on.

    It’s nearly 2am and I’m wishing you a good nights sleep xx

  • Hi  

    Thanks for joining in. I've read your profile and can only wish you all the luck in the world and give you a big virtual hug

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge