Dad has terminal bladder cancer

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Hello

My dad was diagnosed with terminal bladder cancer last autumn. It’s spread to his lungs. He had five cycles of chemotherapy which he found unpleasant but bounced back from reasonably well. He’s had a catheter in since diagnosis  

He then recently had three sessions of radiotherapy and has been suffering from unpleasant stomach symptoms for the last week or so. He’s lost lots of weight and also isn’t drinking nearly enough because he gets leakage from his catheter and gets pain with it, so he’s dehydrated as well. He’s not taking the recommended tablets for his stomach or for pain relief, and now is refusing to go to hospital to get his catheter changed even though it is partially blocked. He had a horrible experience with a previous change and is no doubt worried about the stomach issue and infinity of wait in a&e.

My mum is the one there taking care of him and is super stressed and worried about his condition and the fact he’s not doing what the medical professionals are recommending, as well as feeling abandoned by the system. I’m stressed because I’m not there to help and because I thought we would have time to spend together as a family over the summer and now I’m worried this is it and he’s just going to fade away in horribly degrading circumstances. I really don’t know what to do. My dad is very stubborn and just not the sort of person who it’s easy to persuade (he has an unrelated brain injury from the years ago which increased his stubbornness) and I don’t want my last times with him to involve me badgering him. 

  • Dear EleanorCatLady, just a sad welcome to this very helpful group as it is quite late so no-one else around.

    Can I suggest you get on to the MacMillan helpline 0808 808 00 00 (7 days a week, 8am-8pm) as soon as you can. They should be able to point you and your parents in the right direction of MacMillan or Marie Curie nurses who could come out and help sort out your dad's current problems. There is no way he should spend his last days in as you put it horribly degrading circumstances.

    I would also suggest that your Mum registers with the local Carers' association. the help they offer varies but any support would help her cope. This is both now and later on, many areas offer get togethers for former carers ie whose loved one has died.

    Hope this proves to be of some help.

    There are other forum groups for carers and for those with terminal cancer that may be helpful too.

    Denby

  • Thank you so much for taking the time to reply and for being so kind. 

    He was in a worse state this morning and had also fallen and hit his head so the GP said he needed to go to hospital. It’s not what we wanted to happen but I hope they can sort him out a bit so he can come back home with some  care in place. He has a referral to the local hospice service but they have a backlog - will push for that to be sped up given the current situation. 

  • I’m so sorry to hear about your dad.I hope the hospital can make him more comfortable and provide a plan.Best wishes Jane