Lost left “die in your own home” so lonely

Hi Savvy,

So sorry you are feeling so lost and alone. It sounds as though you do have friends and family, but you are so busy being brave and strong to make them comfortable that you have not let anyone in to how you are really feeling. I know not everyone can take honesty and face the truth, but is there someone you can be real with? Your fears about death are those we all recognise and many of us have chosen to read about the process of death so we can face those fears head on. My go to reccomend is "with the end in mind" by Kathryn Mannix.  You need support and you need to talk to someone about your fears, including your palliative team. Alo try joining us on "The Living with incurable cancer forum" - we are a supportive lot.

xx

Hi Savvy,

I completely understand how you feel. I live alone and I have incurable, untreatable ovarian cancer. I also don't want to talk to my visitors about my fears. On the one hand, I worry that they won't come and visit me if I'm always crying, and on the other, I do find that just chatting to them about normal things cheers me up. I'm lucky that I have counselling once a week thanks to a local cancer charity. I find it really helpful to have a space where I can cry and express my fears, so it might be worth looking to see if something similar is available in your area. Maybe Macmillan offer something or your palliative care team might know.

I'm also going to look into the possibility of going to a nursing home if I reach a stage when living independently at home becomes difficult. I'm worried about the cost but think I would prefer it to just having nurses or carers popping in. There is a local hospice but they only take people in their last week or so of life. Not sure if other hospices take people for longer.

Anyway, sending you a virtual hug and warm wishes,

AisB

Hi Savvy,

I second what ownedbystaffies says, join the incurables, it's an active group supportive and irreverent in equal measure. Also ask your liason nurse for help, pain can be treated, speak out. 

Liaison nurse? What are they …district nurse? Morphine ? They try to throw that at people ..hastens 5he end and shuts people up surely? 

Hi Savvy, beware of scare stories from people who think hospices etc just want to speed up death. There is much more emphasis on pain reduction these days, and plenty on the incurables forum who have lived with and are living with controlled pain and often well past sell by dates. Please join us, and speak to others on there who will have their own stories to tell and advice to give. Liaiason Nurses are usually attached to Oncology Depts, a nurse able to liaiase and explain procedures etc. Please dont despair

Hi Savvy, I am sorry that your experience is so negative, my liaison nurse is part of my oncology team and has been great when I have needed help. I admit that although I am I am incurable I haven't needed much in the way of pain relief so far, but my experience has been  that they want me to let them know of any problems  so that they can help me to deal with them.

Thank you … bad day today ..hey Ho but must get myself together 

What is an oncology team? Seriously asking ..

diagnosed secondary liver metastasised from they don’t know where from …sent home to die in own home

year later not dead but marooned now I  think seriously depressed just crying being horrible am lost want to die but don’t know how I am so weary of being brave 

Seriously I don’t have a liaison nurse…liaise with whom? Where does a liaison nurse come from? I have carers 4 times a day who are awesome …but the rest? 

Thank you AisB take care of yourself…very very best to you x