Dexamethasone

Hi I’ve been on Dexmeth for months . I’ve got 5 stage 4 cancers .The steroids really helped I came on and off them for 4 months . They do work I was depressed coming off them and they weened me off em slowly. Yes I was irrational and my appetite was phenomenal. I’m now off them but unfortunately started to see flashing lights today and recently. They probs wanna put me back on them but I got aoon face u know when ur face swells up . I don’t wanna go back on them until after 29 June as I’ve got a wedding I wanna go to . I know totally bein but let’s see . I’ve told my oncology nurse abouthe lights today do we will see . So I mean they go work for me but are horrible for emotions so I guess it’s upto u . Sorry I can’t be more helpful Be positive honestly that really works 

much love Rehana

I'm so sorry to hear what you're going through, sending lots of love.

It's not vein at all, completely understandable and if you can be without them for a while I don't blame you for working it around events that you want to enjoy! Great to hear you're doing things like attending weddings.

My mum was completely healthy as far as we knew until 10 weeks ago. Her symptoms started as severe sickness and took the hospital weeks to investigate other options and we only received her diagnoses of stage 4 NSCLC very recently. She hasn't left the hospital since, she's gotten so poorly so quickly and hasnt been able to enjoy anything at all.

i still have hope that if we can get her through to actually having some trestment then she may feel better for a while but the way her journey has gone so far I don't know if I'm kidding myself.

She has actually been complaining of blurred vision today which I think is a side effect of the steroids too. I will call the lung nurses tomorrow and see if there's a reason she's back on them and if we could try a lower dose for now.

Thanks so much for getting back to me, wish you all the best x

Hi yes definitely get that checked. My blurry vision was my brain cancer so please get checked asap . I’m only 54 I mean my primary was lung . I thought I had asthma so was totally shocked last October honestly I just get through by planning things I’m so blessed with a huge family. Listening to u guys is so inspirational. I was hiding how unwell I was from my kids but realised that it’s not the w to go. I mean everyone is gonna go back to thier  maker one day it’s just my day will be sooner then others. I’ve shown my kids my pain so it’s easier for them to accept it when I finally have pce . I’ve been in so much pain today so had a lot of oramorph . Now I’m feeling abit normal. I really wish u well just stay positive it really helps. I’ve told my kids let me go in peace and just enjoy every moment we have together.

My mum is 54 too, I'm so sorry that this is happening to you and your family. She has had brain scans and as far as we know there is no further spread other than lung and lymph nodes but it is progressing rapidly.

That's lovely, I hope you guys get to plan and enjoy lots more happy times together. At the moment it feels as though my mum will never make it out of the hospital. I know she's not going to get better but I really did hope we would be able to get some more time together to make the best of. But it has been relentless for her and us and she can't seem to catch a break.

I try to make the best of the days she has enough energy to even talk at the moment but watching her suffer and deteriorate has been almost unbearable.

So glad you have lots of family to look after you and get you through this, keep fighting x