Dads got bladder cancer need advice please

Hi Kat,

I am sorry to hear about your Dads diagnosis and send best wishes to you and your family.. Before the meeting on Friday you could speak or communicate online with the Macmillan support team. They have info and expertise which may help you through this and ensure you know the options,advice and help available ... https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/macmillan-support-line. 

Regards x

Dear Kat, you can probably see at least 18 people have seen your post. Welcome to the forum anyway, I have found everyone an immensely kind and caring bunch over the last couple of years.

I can't improve on sbsj2 s suggestion you tap the MacMillan resources for all the support you can.

My personal take is that although Mum's current thinking is surely driven by caring for Dad, if she stuck to it it would deprive him of the chance to make whatever farewells, bucket list etc he might want, until he realised too late to do this if at all. It would also place an unbearable, to me, burden on you and others and she would be preventing you from possibly having those special conversations with your Dad. Then you and she would have to live with that between you for the rest of her life. It just seems to me a lot of potential for bitter regret. However, I don't know any of you so I could be totally wrong.   

Whatever you end up doing, I think you have summed things up when you say you think you know that answer isn't going to come. Yes there are a few experimental treatments which have helped some, but I have no idea who is suitable to be offered them. But I hope typing your thoughts has helped you make a beginning of getting your head round this. There are also, though I haven't been on them, forums for carers and, I don't know if as a daughter you would be accepted on it, for people with a terminal diagnosis. 

Meantime, we often say to newcomers and oldies on the forum, feel free to rant on here to avoid bottling things up. Thinking of you tonight, 

Denby

Thank-you so much for your reply. I have been looking at the bladder cancer information leaflet on here and will continue to use this site to try to get lots of info and advice. I really appreciate your support and time taken to reply to me xx 

You're welcome. it's what we're here for Kat. Don't forget if it would help eg your Mum to have paper copies of the booklets, they will post them out free for you.

Night night, Denby

Thank you, I appreciate your message so much. Typing my thoughts has helped a little but I go from feeling very matter of fact and strong to being quite upset which I suppose is normal.

I agree with your thoughts on depriving him of learning the truth. I feel it's his right to know and at least he can hopefully get his head round the situation. There's lots I want to speak with him about that I couldn't if we were pretending all was OK and this wasn't happening.

I really do appreciate your thoughts and kind words and I'm sure I will be here asking more advice or just talking rubbish in the coming weeks. 

Take care  x

Yes this is definitely something I will look at! Night night, kat x

Hi . Some good information above. One thing we always tell people is to avoid Google as there is a lot of misinformation out there. Macmillan have produced some comprehensive information on bladder cancer if you click HERE . Also if you need to talk to someone in person, you can call the free helpline on 0808 808 0000 (9-8pm). You will find them very understanding and knowledgeable. I am sure you will know a lot more when you have the meeting on Friday. You can ask for a copy of the meeting notes which helps as it is easy to forget or misunderstand what is said in these meetings. You can ask about any clinical trials and if you are not happy, you are entitled to a second opinion. Best wishes.

Another thought I am known for pushing. Have you looked up your local County Carers' Association? Joining is free and informal, and they offer, varying from area to area, a lot of phone advice and support and in other times, coffee mornings, massage to de-stress and suchlike. They often get NHS funding for some of their work. Your Mum might well benefit as well as you, and later on some areas even have groups for former carers whose cared-for person has now died, so you don't suddenly drop out of any support. They may also help with benefits advice if needed. On that, may I ask if your Dad is of State Pension age or younger?

Really about to switch pc off now....Denby

Hi Kat, so sorry to hear about your dad's diagnosis. My heart goes out to you, it's very hard to be carrying such an awful burden ahead of the meeting on Friday. For my own part, as a bladder cancer patient I have always wanted to be told the truth about my situation for the reasons Denby has described so well. In the meantime I hope you can access support from Macmillan, and after Friday I would expect the palliative care team to introduce themselves and the amazing service they offer. Let us know how you are coping, we are always here to listen. Sending love. xx

What an awful bombshell for you all. I would hope that the medics will be honest - unless your dad has significant cognitive impairment, it's his right to be told the results & prognosis, but perhaps let him steer the direction of any questions. The hosp should involve a palliative care team to ensure that he is comfortable and give you all support. I believe it is important to be as open as possible to avoid the situation where maybe he suspects but won't say & you know but feel you have to avoid talking about it.

Best wishes to you all.