Hi,
My mum was diagnosed with a myxofibrosarcoma in her leg a few months ago. Since then, she has had 3 surgeries (biopsy and 2 further to try and clear it) and has recently started 6 weeks of radiotherapy. She had a chest ct scan last weekend, it has been 3 months since her last one that was clear and we are currently waiting for the results. I have never felt anxiety like it before. The whole process of diagnosis and the treatment plan has felt so prolonged and hard as initially struggled to diagnose it. It had to be sent off for other opinions and then the wait for multiple pathology reports each time she had a surgery to see if margins were clear etc. It has felt like every few weeks we get some shocking news and then there is a period where we process it, all be positive and try and get through it until there is another wait. Opinions have kept changing so at times we have been given reassurance and we feel a lot more hopeful to then have it followed by a conflicting opinion/information another week. We are all very academic as a family and like to know facts, but the thing about this type of sarcoma is it is so rare so there isn't a lot of information out there, nor have doctors seen it a lot which definitely makes it more scary. My mum is the most amazing person and mother I could ever imagine and my best friend, we have the closest relationship, there isn't more than a couple of hours that goes by where I am not texting or calling her so her going through this is the worst thing I can imagine happening in my life. The thing that is really heartbreaking to see is to see how her life has changed and her mental being from this and I think at the moment she doesn't see light at the end of the tunnel because she just feels like she will constantly be worrying about it reoccurring and scans and waiting for results. I have been so positive from the beginning and tried to get her through it but I am struggling now. I don't want to show her or my family that as I need them to all keep going too. My family and I have been fortunate enough to have not had a close member have cancer before so this is the first time which means it is a struggle to navigate. She is my whole world so it is heartbreaking to see her go through any pain and I wish I could make it better. Any advice or positivity or hope would be great that I can pass to her or for me. Thank you, sending anyone else or loved ones going though this sunshine, positivity and happier times ahead.
Welcome to our community, I hope you find it both informative and supportive.
I am Steve, one of the community champions and my experience of cancer is via my wife who has Leiomyosarcoma.
I can very much relate to the issue with taking time to get a diagnosis, Janices route was - difficult - but they got there in the end.
Many people find waiitng on scans and the results really difficult. At one point when I first reached out for help I walked in to our local Maggies centre and spent the best part of an hour braindumping throught the tears.
Something that helps me on here is looking at your emotions when someone has cancer as being able to recognize the emotions and accept them as normal and valid can help to make them less overwhelming.
For us most of this was about 10 years ago, as the second round of chemotherapy managed to render the cancer stable. Janice talks about living with cancer and that it does not bother her and she is not bothering it.
Do post on here whenever as someone is always listening.
<<hugs>>
Steve
