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

  • Hi MM, it's good to get your feeling out. Quit understand how you feel. As for a time line, there only an estimate. With all the newer treatments about they just don't know. I hope  the radiotherapy works well on your spine and you manage to stay mobile. We are here for you to tell all the things you don't want family/friends to have to deal with. Pain and lack of sleep put in the mix doesn't help you deal with your prognosis. Keep posting MM, I'm off for an ultrasound later on my lumps, deep joy lol xx

    Moi

  • Hi  , really sorry to hear of your predicament. On the subject of the mobility, I was faced with almost the same problem in sofar as being forced to move into a wheelchair. Having said that, maybe it's instilled in the northern Irish but when I go to the shops, whether people know me or not, several people in say Tesco or Lidl but not limited to them, I am amazed and so grateful that there are so many customers and staff offering to help me with reaching items from the top shelves, taking my shop bought purchases out to my car, loading them into my car and one lady in Tesco who was clocking off her shift actually did my shopping for me. All I had to do was name the next item and follow her to where it was in the store and take it out to my car.

    She was so lovely and caring and of course I wrote a letter of praise to the manager. 

    So mementomori, I hope that the radiation treatment benefits your mobility enough that gives you a lot more freedom than you currently have and perhaps you could learn a new skill (see my new thread). Whatever happens mm, it's an honour to have met you.

    Tvman xx 

    Love life and family.
  • Good luck Moi with your ultrasound xx

    Love life and family.
  • Hi Tvman , there small lymph node's,  the consultant recons at this stage no more scans needed, but he'll leave it to my doctors. As far as he's concerned nothing to worry about xx

    Moi

  • Sorry to hear about your situation 

    im in a similar situation, due to a brain stem tumour my mobility has been impacted 

    unfortunatly for me radiotherapy made it worse

    its not expected to improve as they can’t remove the tumour but I’m just working on it not getting worse

    20 years ago I had another tumour wrapped around the brain stem and spine and from that I was completely paralysed including not able to breathe

    the drs said it was permanent and I’d always be attached to a ventilator but 8 months later I was breathing unaided and could take a few steps so drs don’t always get it right 

    this time mobility was not mentioned but they said my fertility and cognitive ability will be both of these are fine 

  • Hi Moi,

    Thank you so much for your message. I woke up this morning and feel even less stable than I was yesterday, but I know that mornings are worse than afternoons so hopefully I'm better later on today.

    I'm glad to hear that your ultrasound results were okay and that your doctor wasn't concerned.

    MM

  • Hi , thank you as always for your support.

    I am actually looking forward to my Palliative Care appointment today, as I'm fearful of injuring myself without walking aids. I do not know how a wheelchair will fit into my house but even a walker or a walking stick would be better than nothing. My poor partner has only just moved in and I think it scares him how quickly I'm declining. I don't blame him, it scares me too.

    I know with radiation, things often get worse before they get better. I hope that this is not the case here but I have a feeling that it may be.

    It's great to hear how helpful people have been to you since moving into a wheelchair. I am getting lots of stares at the moment as I am covered in bruises (steroids and low platelets!) and limping, so I think they think I have been in an accident or something. It's strange as I feel like people stared at me much less when I was bald from chemotherapy than they do now!

    Sending love,

    MM

  • It sounds like you've been through a lot, but I'm glad you proved the doctors wrong. Thank you for your message and I wish you all the best.

  • Hi all I've just done a reply and reported myself to the Moderators,  think I'm loosing it 

    Moi

  • I sense relief from a lot of people who know and love you Moi xx

    Love life and family.