Hi there, recently learnt I have a very rare type of sarcoma with probably poor prognosis. I am mid 30s and my life turned upside down. I need your help and support to cope with this. I have my staging scheduled for tomorrow...
Hi , I am sorry to hear about your news. Is it a biopsy that your having tomorrow? I hope the thought of it isn’t keeping you awake. It’s very understandable to feel that your life is being turned upside down, I’m double your age, and that’s how I felt when I had my diagnosis. I found some comfort reading the information and support pages to know that how I felt was normal and that somehow made it easier to deal with. My cancer is different it’s metastatic melanoma but I’ve been through a poor prognosis discussion, well actually I zoned out when I was being told. I only realised I’d zoned out when I suddenly became aware that the dr was quoting a Robbie Burns poem at me. I’m am still unsure wether she did this to check if I was listening, or because the drs crackers, or because she astutely thought that was the best way to gain my attention again without wasting her time.
Trying to put a positive spin on the situation, it’s not long to wait now, although time goes faster when we are enjoying things, and slower when we are waiting for things to happen, I hope a way forward for your treatment can start soon.
I must admit I’m not 100% positive from your short post which cancer group to direct you to but I’m thinking soft tissue sarcoma and I apologise if I’m wrong, I’ve put the link below, to help you find people with as similar experience to yours as possible.
i hope tomorrow is do able for you, I had asthma as a child and at various times needed to concentrate on just breathing and staying calm, and so when I had my biopsies that’s what I concentrated on. I had one biopsy guided by a CT scan, and another one guided by ultrasound, each time the staff have been really nice and supportive.
If there are any questions that you feel I can answer please ask away by pressing reply. My last tip would be make sure you ask for a contact name and number for someone at your hospital who can answer any further questions you have. I was luckily given the details of a Macmillan nurse and she was great in my period of uncertainty before treatment could start.
I'm so sorry to hear about your situation. I'm 24 with glioblastoma with poor prognosis and can relate to your feelings so very much. Right now it is a lot of informations for you to take in and thinking about prognosis only makes it harder to cope with. I don't have much advices for you as I am only at the start and do struggle myself, and telling you not to overthink I know won't help, but stick around here, read and listen to the people and talk about how you feel. I will keep everything crossed for you today and further on and will be thinking of you.
