Retroperitoneal liposarcoma

Hi Scarlett62 and welcome to our community.

Sorry you have not had any answers, my wfie's form or sarcoma is different - Leiomyosarcoma but she too has been down the chemotherapy route and in the end it made her cancer stable. She has not had any treatment now for some time but it doing really well and we are in a position of living with cancer - and are at peace with that.

Scans are always a bit of a challenge, we often refer to this as scanxiety.

<<hugs>>

Steve

Hi Steve 

thanks for your reply and I’m glad to hear your wife’s cancer is stable. Mine is at the moment, I’d be very happy if it stayed that way. It’s all the uncertainty I find difficult to deal with. Any tips? 
hugs and love back to you x

Hi Scarlett, I have retroperitoneal liposarcoma too. I haven't been offered chemo. I am no longer operable. It is so tricky just waiting around and worrying about what's going to happen next isn't it? I guess my only advice is to take time in chunks, say the next day or even hour and make that next chunk of time the best it can be, whatever that might mean for you. Try not to project too far ahead. I find mindfullness works, alongside other meditations to simply switch off from all the uncertainties. Hope that helps a little. Sparky2  xx

Hi Sparky

thanks so much for your reply, I feel less alone now. Whilst I know that our diagnosis is very rare, I had hoped that I would hear from a few more people! So again, thanks for replying. 
your advice about chunks of time is very helpful. I have divided my future into phases (I called them stages at first but it sounded too much like the cancer stages!). I’m currently in phase 3 - chemotherapy, however this has several phases to it, so I might have to rethink! I find mindfulness really helps me to come back to now, particularly when my mind is racing ahead. I am finding the book by Kathryn Mannix ‘With the end in mind - how to live and die well’ very helpful, although it’s a very tough read. I do hope you’re receiving good support, and send you all my very best wishes. I’d love to hear any other thoughts you have. 
scarlett62 xx

Hi Steve 

I hope you and your wife are okay. I just wanted to let you know that your words ‘ living with cancer’ have given me a huge boost. Someone else said it to me recently and it’s changed my thinking from ‘I’m waiting to die’ to ‘I’m living (with cancer)’ 

So thank you, it’s really changed my perspective. Sending love and hugs.  
Scarlett62 xx