Hello,

I'm brand new to this site, but have found so much encouragement googling peoples similar experiences over the past months that I thought I would get involved in the hope it might help.

My Father discovered he had Bladder Cancer towards the end of last year. After his Cystectomy, the surgeon confirmed that my Dad has a very rare, very aggressive cancer and advised the best course of action would be a Radical Cystecomy. After long discussions he decided that this would the right thing to do. At this stage, his main worry was living with a stoma bag...how wrong we were.

In March of this year he went in for surgery. He spent a few days in the high dependency unit and then was moved to various wards. He endured many set backs and then ended up with a horrible bacterial infection. To cut a long story short, he spent 7 weeks in hospital. He lost 3 stone in this time and he was never a heavy man to begin with. The deterioration was heartbreaking to see as he just became a shadow of his former self. The dietitian only arrived on his discharge day and apparently was not made aware of his case. She was angry that she had only met my Dad at this stage and could only apologise for the mix up. Angry as we all were that my Dad had been forgotten about in this way, we just wanted to get him home. We were so upset at the lack of support he received that was promised to him prior to any operation. We were made to believe he would have a strong team behind him and sadly this was not the case. He was discharged but had to travel to the hospital every day for nearly two weeks (45 minutes away from home) to receive a 30 minute anti biotic drip to try and help with the bacterial infection. This trip each day was a massive struggle for him as he was so weak.

We waited 8 weeks for the biopsy results. We were told, very coldly, that the aggressive cancer had spread to the near lymph nodes and that they discovered he also has prostate cancer. A different cancer that wasn't AS aggressive, but more cancer none the less. The Surgeon did not explain how serious this was and just said he will need to come back in 6 months for another scan.

Terrified of this diagnosis, I researched day and night and got in touch with Macmillan who were a fantastic support. At last, I felt someone was being honest and kind to us. They advised me to call his GP who has also been fantastic. After a very long discussion with him, he confirmed that this is not going to end well and that its not a case of 'if ' the cancer will spread but when. I was then left to pass this information onto my Dad and family. Heartbreaking conversations to have with my family who are all look up to my Dad as much as I do. 

A Macmillan nurse was out to visit him within a week and was so gentle but direct in her approach that I think it was finally sinking in with my Dad. I saw him cry for the first time throughout this horrible journey and I seen how scared and vulnerable he really was. 

My Dad has decided that he isn't going to have anymore treatment which we all completely respect and understand but the road ahead is just so terrifying. As my Dad wants to stay at home and be cared for by my Mum,  the district nurse visited him yesterday. She brought the 'Just in case' box which was absolutely huge! My Dad was told that it contains all of the things he might need for the end and he quietly went to bed without saying much. 

I am hurting so much for him. He is my absolute hero and I have been there every step of the way throughout all the consultations and hospital visits so feel closer than ever. He is a very proud man and hides behind his fears with jokes, but I know he is scared and just so sad that this is all happening so fast. 

Its so difficult feeling there is nothing we can do and I'm just so worried that he will sink into a bad place and not be able to lift himself out.  I worry for my Mum too who is anxious for the road ahead. Although she cared for my Grandparents at home, this is a different scenario. It is her Husband, so the emotions are running high. We have never had to deal with Cancer this close and we are all muddling through, but no idea what to expect. I have constant butterflies in my tummy and feel I need to just put these nervous feelings to one side for the sake of my family and 11 month old baby. 

Sorry for the ridiculously huge post, but even writing this out seems to help.