No contact after op

Hi Kaz 

sorry to hear your still waiting for your results. I had my operation 3 weeks ago and was lucky to be looked after by a sarcoma specialist centre and I have had my test results to confirm it was a liposarcoma. I’m not sure if it’s because of the lack of knowledge about sarcomas but I’ve not felt very supported during my journey. 
I’ve been told that they think they have removed my mass which was in my pelvis and was the size of a beach ball and they also had to take away my right Fallopian tube/ovary and shave a section of my womb as it had penetrated the wall.  I’m now to have regular MRI’s to check it doesn’t come back. 
Im concerned that something still isn’t right as I’m still in the pain I was before surgery and experiencing the same symptoms. They have now referred me too spinal surgeons. 
There doesn’t appear to be much knowledge or support out there for sarcoma patients. 
It would be nice to have someone to talk too about it all. I think a lot of people don’t understand as it’s “been removed” so all is ok. I feel so lost and alone and don’t know who to talk to who will understand how I feel. 
look forward to your reply. X

Hi Lulu8710

Thank you for your reply. Totally get where you are coming from regarding people's reactions. Once I told the few people I shared my news with that my tumour had been removed then I was all of a sudden cured. If I try to tell them I may need further intervention they don't understand. The general surgeon who told me I had leiomyosarcoma said at least in wasn't breast cancer, then told me I had something that was rare and aggressive, wow that's sounds so much better than a cancer that has been studied and has a higher survival rate.....

I've come to realise you have to make a noise to get support, the last thing we feel like doing and with covid it's even worse. I'm being drip fed information. I now know my tumour results will be discussed on 12th May and then I'll hear something shortly after. It's the waiting that is the awful thing. 

You are only 3 weeks after surgery, you are bound to be in pain but if it doesn't feel right contact your cancer nurse specialist. It's very scary, I have melt downs when I least expect one, I don't want this, I'm a very healthy person, I don't look ill, I don't understand any of it and I expect you feel the same. Do you have a clinical psychologist? They are quiet useful to empty your head and tell them things you can't to anyone else.

Please don't feel alone in this, I may have a different sarcoma but I'm sure we feel the same and have similar thoughts. Xx