I am desperate for someone to talk to, desperate and I find myself scrolling through precious posts on here and finding some comfort in the fact that there are other people who have gone through and go through what I am going through.
I feel suddenly selfish after all of those “I’s” but actually I wish it were I. I wish it were I that had the tumour in my leg.
I am new here. My son has had a malignant aggressive tumour found in his femur. It has all been INCREDIBLY quick. Our world has been turned upside down.
Within the last 3 weeks he has gone from a slight limp out of nowhere (reason I got him checked) to being bed ridden in a hip spica with almost a 3rd of his femur bone gone.
Within these 3 weeks we have visited 3 hospitals, been admitted once, had 2 x rays, 3 sets of bloods taken an MRI scan and a biopsy which we are still waiting for.
I am terrified it is all happening so fast and spreading so fast, and still have 10 days to wait for diagnosis (LCH/Osteosarcoma/Ewing sarcoma)
I have no family close by it is just me and him. I believe I am coping relatively well in that I enter into survival mode, take care of him, and get through the days without breaking down (too often)
But all I think about and research is what is to come, possible outcomes, and I have no one to talk to. I am already upset at how many times I’ve watched him scream mummy no, while they put him to sleep or struggle to take his bloods, or as I force medicine into him 7 times a day (I’ve tried everything)
I think the words I fell lost are an understatement. I don’t really know what I am looking for in writing this, but it helps to get out how I am feeling.
Hi ,
My wife has Leiomyosarcoma and like all sarcomas they are quite rare. There is a specialist charity sarcoma uk that only concentrates on that that could be a helpful source of support. Clic Sargent is another charity that specialises in support children with cancer and their parents. You are so right that trying to face this alone is very difficult. I ended up doing a living with less stress course with Maggies when I came close to breaking with my wife's cancer balanced with bringing up a young son - at one point he was in the Children's hospital and at the same time my wife was in the women's centre and it felt like I was torn it two.
The course helped me realise I was living in fear of a future I had no control over and that was robbing me of the joy of the here and now. It also helped give me tools that when something came out of the blue I could take a moment to gather my thoughts and do something useful rather than be swept away - even if useful it just holding hands or a hug. Transcendental mediation though just made me laugh and I could not take it seriously but respect to those it helps.
None of us can be strong all the time but if we can form a little team that helps when times are tough we can celebrate success together and help to hold each other up when times are tough.
You can do it and do post on here or phone the helpline whenever you need because there are many good people who will reach out to help - true friends in need.
<<hugs>>
Steve
