I've stumbled upon this through curiosity and possibly even desperation. An outlet as such. To shout and scream to people who get it, rather than my lovely family who (fortunately) don't.
My then 33 year old husband had huge surgery January 2024 to remove a paraganglioma that had been there since his teen years but had only just been discovered. Cancerous, sadly.
He'd had 3 rounds of nuclear therapy to try and shrink it a little to help with the surgery. It was been his kidneys, massive, wrapped around all sorts of vessels and organs. The surgeons done a miraculous job in getting it all out!
The after care wasn't as good as it should have been. He had a single scan in April 2024, which was clear. And that was all!
Roll on to April 2025 and the symptoms started again. I rushed him to hospital, to be told later that day that the cancer was back. This time in his lymph-nodes in his abdomen, chest and neck. To hear "we can't cure it", "1-3 years with treatment", "palliative team" etc, is just devastating. He's 35! We've only been married for 3.5 years! This isn't fair!!
And now the downward spiral has begun. He isn't coping, understandably, prefers to live in denial. He won't take his chemo tablets correctly, if at all. He's turned to alcohol. I keep track of the appointments, follow ups, the team generally direct their words to me, I ask the questions and do the research.
And I just don't know how to support him anymore! I have 2 children, 18 and 7, his by name not nature. I constantly feel like I'm sinking, trying to be there for the 3 of them and not really knowing how to be there for myself. Denial is a lovely bubble, how does anyone accept this? Prepare for the inevitable? Tell the younger children what's going to happen without destroying their world and innocence? Help their loved one get through self destruct? How does anyone do this!
For anyone who made it this far, thank you!
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.
One of the issue with rare cancers is that useful statistics are hard to come by, with my wife she was clear she never wanted a prognosis and I really struggled with that as we had a young son.
Something that really helped me was a living with less stress course. It helped me appreciate the day to day rather than worrying about a future I could not control and often imagined worse that actually happened.
There is quite a good guide on here talking to children and teenagers that I also found helpful and we got great support from our son's school too. One time Janice asked Michael if he was ok and he said no not really - but at least we could deal with it honestly.
Do post on here whenever as someone is always listening and remember you can always speak to someone on the helpline too.
<<hugs>>
Steve
