A series of disconnected (but kind of connected) thoughts and feelings, courtesy of mementomori

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Hi all,

I'm so glad to have found this community to be able to speak to people who know how I'm feeling.

I am struggling with mobility at the moment, due to a tumour in my spine. Hopefully this will get better with the radiation treatment I'm having, but all of this is palliative now so I know it's probably only going to get worse. I'm really worried about losing my mobility and what that would mean. I am yet to meet with the Palliative Care team so suppose that will help to clear things up. My doctors don't really want to do any more chemo due to the rare complications I seem to keep getting, but I just feel like I'll decline so very quickly without it. I'm scared of the possibility of deteriorating rapidly - not necessarily of dying overall, but of becoming too sick to do anything I want to do anytime in the near future.

I didn't ask for a timeline - my doctors probably wouldn't be able to give me one anyway, given how rare my set of circumstances are. I have a feeling that it's shorter than my family thinks it is, and I don't really know how to handle that either. I just feel like I don't want to talk about it at all, it makes me uncomfortable to discuss with people in my day-to-day life. Avoidance/distraction is working in a way, but I worry that it's not productive. But do I care about what's productive anymore, or am I just aiming to get by as happily as I can?

The steroids that I'm on are also affecting my sleep, which is obviously not ideal and makes me feel even more off-balance. Just feels like everything is piling on, and I don't know where to even start! I'm always the problem solver, but I've been presented with a problem that I can't solve and it makes me very uncomfortable.

I guess I just needed to rant a bit, which is what this discussion board is for, after all. If you have any advice or just want to commiserate alongside me, please feel free to do so.

Sending love, prayers and good vibes <3

  • There is a way to type without hands, speach recognition but the software is very expensive, there are times I don't respond to post that's because I have osteoarthritis in my hands and it gets painful.

  • Sorry to hear that Ulls, my wife has osteoarthritis in her hands and can't manage a few things she used to do. Because I have certain spinal nerves trapped, my grip between my thumb and forefinger is compromised and it's difficult to pick things up etc.

    My mother in law had rheumatoid arthritis and her knuckles were mis-shapen and sore.

    Take care Ulls

    Tvman 

    Love life and family.
  • Hi Tvman, osteoarthritis in feet, knees, hands, and neck. Rhumatoid arthritis in neck, and osteoporosis everywhere else, I don't like missing out on anything, year right! 

    How are you and mrs Tvman doing 

  • Aw Ulls that's a lot to deal with. It must be hard to keep positive. What troubles me is programmes when someone who is walking alongside a river and they climb over a stile or walk over some rough ground and I realise that I can't do that anymore because I can't walk, I am a wheelchair user! Pensive However it's one of life's little trials.

    Mrs Tvman is having great trouble with her back too but she's fine when she's with me. That stands to reason! 

    Tvman 

    Love life and family.
  • Hi Tvman, I do have spinal problems but nothing like yours, and you amaze me haw well your coping with your C and still managed to garden with such excellent results 

  • Hi Jules this is being typed using voice recognition free on Google, ok it's spelt your name wrong but I haven't collected anything

    Sarah 

  • Hi ulls, this id typed, without correction , I tbinknthe free voice recognition is pretty good these days

    Sarah 

  • Are you using phone or PC 

  • Im using an android tablet, i can do it on my phone as well, i haven't tried it on the pc

    Sarah 

  • I've just purchased a new PC windows 11 Daughter set it up and did what was necessar, but didn't have time to show me how to work it, as I've been to busy as the wind snapped on of my fence posts, new post in hange gate tomorrow with a bit of luck.

    Will try and get the phone to type something tonight