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

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 mementomori. , 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 

Good luck Moi with your ultrasound xx

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 tvman, 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