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

mementomori
  • 59 replies
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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

  • in reply to Salis

    Hey Sal, How are things? Lovely to see you on here. Hugs. Rainie x

  • in reply to Rainieday

    Hi Rainie, I am good thanks, I don't get on here as frequently as I used to. Since I have been feeling better I am getting about more and have even volunteered for some admin roles in my choir and become the local organiser for my Women's group, NWR.

    I had another scan at the weekend but won't get any results until March 20th.

    I will be visiting Norfolk in May with all my kids and their partners and my husband and all the family dogs. My eldest daughter will only be two weeks off her due date, so her midwife has said that if she is travelling she must bring her hospital bag and a car seat for the baby just in case!

    I hope that you are doing well 

    Love and hugs xx

    Sarah 

  • Hi   We haven't heard from you for a while.  How are you? 

  • in reply to Mmum

    Hello  , sorry it’s taken me so long to respond! I’m still here, however am now completely paralysed from the waist down which has been a bit of a bugger. Still enjoying the good days and getting through the rough ones, as we all are I suspect. How are you?

  • in reply to mementomori

    Oh no, I am so sorry to read this :-(  I'm wishing you more of the good days.    We're all here to chat if you need.   xXx

  • in reply to mementomori

    Ho my goodness Memento Mori, what a brave and stoic person you are, able to look on the bright side, I'm not sure I could handle being paralysed, God bless you 

  • in reply to mementomori

    Hi Mementomori, I've just seen your last couple of posts and more don't know if you remember but I used to chat with you when you joined. I've gone back to those chats and you spoke then about the possibility of paralysis and now your fear is here. How are you coping and is your faith a great help? I'm really so sorry to hear of your demise but I can't think of anyone else who can accept it as another step in your progression. I'll ask how you are but you'll say I'm fine, how are you?

    I've been fairly stable lately, my next appointment in the cancer unit is tomorrow and I'll learn the latest blood picture then. 

    One more important event in my life is that my wife was diagnosed with rectal cancer on Good Friday of this year. Three days ago were her last chemo tablets and radiotherapy session. Now there's a 10 week wait whilst the radiotherapy continues working and then she'll have a scan to see if there has been any reduction in size of the tumour. I can handle my own cancer but I am not doing well with her cancer but hiding it from her of course.

    Hope to hear from you soon

    Tvman xx 

    Love life and family.

  • Sorry to hear this MM, we’ve missed you your such a positive light. How are you coping physically and mentally? Much love to you

    Jac x

  • in reply to tvman

    Hey Tvman, wow sometimes life can just bloody suck can’t it? Sorry to hear about your wife. I know my partner and I withhold information to protect each other even thought it undoubtedly makes things worse!

    It’s been a bit tricky not resenting able-bodied people but hey these things happen. I’m very worried about losing my arms, thus losing work, social media, games - plus basically every other piece of independence I have :( 

    Ah well - I’m going to make a thread elsewhere that’s a bit more positive - “see’ you there/

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