u/Enough_Duty9594

Suddenly paralysed

Hope this is allowed here. I was paralysed as a side effect of a cancer treatment I received. It all happened in 24 hours, and it affected my brain too in that time. So I sort of blacked out, and when I came to, I couldn’t move my legs. 5 weeks later, I still can’t. They think it’s inflammation at at T10 that’s pressed on my column it went into shock. Neurologists can’t tell me anything about when or if anything will come back, and if it does to what extent. The inflammations probably gone now but it’s up to my body to repair the damage if it can.

I can’t really wrap my head around it. Up until recently I was just focussing on getting back to my two young daughters. They’re only 4 and 1. Having a birthday party for the 1 year old in the same hosp I gave birth to her in a year ago was a headfuck. But recently, I’ve begun to realise that, if I don’t regain the ability to walk, I might just be impacting their lives for the worse. Having to make alterations to the house, destroying its market value, they won’t be able to do things all their friends can with their mums. I would need looked after by my husband, taking time away from them. And I would’t be able to do all the things I used to for them - cooking, picking them up when they fall, climbing playground apparatus with them, showing the baby how to go down a slide. I wouldn’t be able to safely be left alone with them for a long time, if ever. And all of this makes me realise….i think I might remove myself from the picture if I don’t get my legs back. My kids deserve better, and they won’t remember me at this age too much.

This has been a rollercoaster. I was so determined to beat this cancer (results still pending), but now I just want to give my family the best chance at a normal, fulfilling life. It hurts to realise that that may be without me in it, but ultimately I need to do what’s best for my children.

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u/Enough_Duty9594 — 2 days ago

Hi all,

Had a bit of a rug-pull in my DLBCL treatment. Was diagnosed as stage 2A, limited disease. I’m 37F, and my doctors’ key message at the time was that this was treatable, I was r-ipi 0, and there was absolutely no reason not to think this would be a few months of R-CHOP misery and then I could get on with my life. Which I really clung to, as I have two young children, the second of which I had in August ‘25.

Except it’s resistant to R-CHOP. The PET scan today showed it was active as ever and my docs have referred me to the CAR-T team. And while my main focus is keeping it together for my kids (4y and 8m), which sort of keeps me going…..I am terrified. Not wanting to plant things in the garden type of terrified, because it’s a reminder of how short my life might end up being.

I have a healthcare background so I understand the risks and implications of having a refractory disease. I think I have a good idea of what CAR-T has achieved in terms of giving those with r-chop resistant disease another shot of a cure….but I’m under no illusion that this isn’t a step towards my absolute worst fear: leaving my kids. I’m heartbroken everytime I look at them.

I guess I just need some positive stories, or encouragement from those who have gone through this. I can find literally no stories of people who have had such early-stage disease and not responded to r-chop. It feels like 0-100 real quick. There’s a little voice in my head telling me that it must be extra-bad to be this tricky so early on.

Thanks for reading 🙏🏻 keep fighting the good fight, everyone.

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u/Enough_Duty9594 — 4 months ago