Hello, my husband (35 years old) has been fighting a rare bladder cancer for the past 5 years and in August this year we were told it had spread to rapidly and he had days to weeks to live. He had been on an experimental targeted gene treatment and we really thought it would work, we had so much hope. We were told separately, my husband on his own, while I joined on the phone at work. It was devastating. I didn’t know what to do with myself, I’d always promised him it would be ok and it wasn’t going to be. Since that day we’ve not heard from his oncologist (we had a relationship with her for the whole 5 years) after she passed us on to the hospice. I feel really angry about that. I feel abandoned and as it was only her and myself who supported Dan through this I feel like I’m the only one with the knowledge of what we really went through and what medications he can handle.
It’s now the end of October and my husband is still here. He was doing so well, but now his stomach is protruding, with a swollen liver and a tummy filled with fluid. He’s a deep yellow with jaundice and won’t stop itching, with little cuts from his nails all over him.
I’ve been trying to work out how long we have, I feel like this is going to go on for ever and it breaks my heart everyday seeing my love shrink and become someone I don’t really recognise. He seems to have no real interest in interacting, so I feel so lonely.
I have read about the dying process over and over again and it says the first thing to shut down is the digestive system and he will stop eating, but he is eating HUGE amounts and I worry that might harm his already very bloated stomach. Why is this so hard and why can’t I find any information about others who have died from secondary liver cancer and what to expect. The hospice nurse and GP don’t really know what’s going on.
Even writing this made me feel a lot better, I feel I can’t share with anyone.
Thank you for listening to me and I wish you and your loved ones peace x
