I've been dealing with cancer for over 5 years now and never really reached out in any community group such as this before. But lately I'm really struggling with the mental load of it all.
The short version of my journey is i had synovial sarcoma in my knee, removed in 2019 followed by radiotherapy. All went well until September last year when it turns out i had developed another cancer (spindle cell sarcoma) likely caused by the radiotherapy. I had surgery to remove that in december.
My latest scan wasn't great but my doctors don't know whether it's cancer still/again or if it's just fluid. I feel like the ongoing theme of my life at the minute is just uncertainty and I'm so sick of waiting around for appointments and results I just want to know, for better or worse. I'm also waiting on results of genetic testing to check for a TP53 mutation as I've now developed two very rare cancers by my late 20s.
Hi Halz and a very warm welcome to the Macmillan Community but sorry to hear about your journey.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. "
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
