Going through a tough time. My son was diagnosed with Hodgkins Lymphoma 8 years ago and had 6 months of chemo. He only got the all clear 2.5 years ago and was diagnosed with another cancer at the end of January this year. It's not related to HL and it's a really rare cancer with a cancer gene mutation and MDT can't find anyone, anywhere with this cancer with the gene mutation. He's had surgery to remove the tumour but they couldn't get it all. He'll be starting targeted gene therapy probably next month and then more surgery and probably more treatment after that.
We are absolutely devastated and I'm heartbroken for my son. He seems to be coping better than me. He was getting his life back on track, is in 1st year in University and enjoying himself as all 19 year olds should be. As the cancer isn't agressive there is no rush on the treatment and it took the team a while to come up with a treatment plan so at least he'll get to finish 1st year at university.
Finding it very difficult to talk to people, have been avoiding situations as I just get so upset. I'm going to counselling, my friends and work colleagues have been fantastic. But it's so hard trying to get on with life. And so hard watching you child going through this again and wondering is this what his life will be like - constantly fighting cancer.
Rare cancers can be challenging - my wife has Leiomyosarcoma and before coming on here I had never met someone with the same. I remember though before cancer visited my family how uncomfortable a conversation was around that. I can be amazing how typing on here with people who just get it can be helpful though of course we are welcome to speak to someone on the helpline too (they are amazing!).
I did a living with less stress course that really helped me - a key element was focusing on the here and now rather than worrying about a future that I could not control. I was also much better at coming up with disasters than actually happened.
<<hugs>>
Steve
