End of life advice

Hello everyone

im really hoping someone can advise or put my mind at ease. I have terminal bone cancer, main site is my left lung pleura (my whole left lung is essentially chocka with cancer) and then some further mets here and there. I ran out of treatment options around mid September when we found cancerous fluid in my heart and had to have it drained. Since then I’ve been living at home with the help of palliative nurses and doctors and daily visits from district nurses and carers, as well as my parents and husband who live with me and are carers for me too. I’m very lucky to have them. Around September I lost a lot of my mobility - I cannot go from sitting to standing and I have a lot of fluid retention, I think it’s called edema. I tried staying in the hospice but had a horrible time because they had no way of assisting me open my bowels whereas at home my husband hoists me up from my recliner chair and either wheels me to my electric toilet or helps me walk with a frame which I can sometimes do, although it’s increasingly hard.

Back in September I accepted that I had taken a major turn and more or less said bye to everyone. I am ready to go. But I’m still here. I just want to know when this will end. I am on 150mg of prolonged release oxycodone twice a day and then take regular 50mg “booster” oxynorm tablets for the breakthrough pain, but this still isn’t getting rid of the pain. How much do others take? I also gag all the time even though I am rarely actually sick, and this puts me off eating. I have no appetite and really have to force myself to eat. I can’t go near food supplements as they really do make me vomit. I want to give up and just stop eating but all the nurses and my family insist I have to eat. I drink loads of water. I’ve read that in the last few days people stop eating; can I just give up and stop eating and be left alone? It’s causing me anxiety. I also can’t find a way to balance my constipation from medication with laxatives so I’m not opening. Peels regularly. I had to have an enema the other day which was still embarrassing. I have a catheter so at least I don’t have to worry about that one thing!

As you can see, I’m basically in a living hell. This is my second night not sleeping thanks to pain and anxiety. Does it sound like I could be days away? Does anyone have any advice? This is not a life worth living anymore but I don’t know how to escape this hellhole.

 

thank you all

 

Rebecca

  • Thanks for your reply Dave. I agree that pain management is a priority. Sorry about your mother but I’m glad to hear her last days were as comfortable as they could’ve been in the circumstances.

    Best wishes

    Rebecca

  • Rebecca don't know if she can help but I'll see if [@marj58]‍ can help, best wishes.. Billy 

  • Hi Rebbeca, 

    First off I just to start off by saying how brave and strong you are. Times are so tough for you and of course you are in so much pain. I can't give you advice or tell you how to feel but I can tell you how brave you are. The pain you feel must not be easy, it must be hard, very hard and I know the easier option is a way out but I can only suggest you speak about your struggle and your pain with loved ones and nurses and anybody else you can kick up a fuss with. You have people around you who love and care about you, so you are no bother to them at all. This is your time. You are still here and thats a sign, life is holding onto you a little longer, so please try and enjoy the last momments regardless of how tough they are, with loved ones especally as they will struggle. 

    I can only ever imagine what you are going through and my thoughts are with you. I am a firm believer in god and I pray he makes things easier for you. Everybody has to leave this earth one day, like me and you so I only pray its easy for you and if your time is not now, may you feel better. 

    Sorry if I am not much help, all the best x