Dying with CUP

My father is dying with advanced cancer of unknown primary

He has gone from someone climbing up a ladder in Feb to bed bound, confused, anorexic. 

He was initially misdiagnosed with cholecystitis and there was a 6 week delay before they found the cancer, by that time he had massive ascites and omental tumours. He was offered palliative chemotherapy but the cancer was very aggressive, he spent a month in hospital trying to get symptom control by the time he got home it had spread to his liver and the oncologist refused him for chemotherapy.

Just feel so hopeless and angry how slow the doctors and NHS system is. I feel like my dad missed his window for chemo because of ineptitude.

I feel so sad, none of us siblings are married or have children so he'll never get to see any grandchildren, my mum is 10 years younger and touch wood very healthy and she will have to try to live a good chunk of her life without him. 

Just have this horrible ache in my stomach constantly since we found out he had cancer of unknown primary, it's been so hard watching him go from walking and talking to bed bound in a matter of 3 weeks.

 

Parents
  • Hello [@LostCentipede]‍ 

    I wanted to reply as your story sounds, largely, very similar to my mum's diagnosis in January. I'm so sorry you're going through this. It's really cruel 

    My mum was taken into a&e end of January, and kept in hospital for a month at which time she was diagnosed with lung cancer that had spread to her spine, brain and liver. They said she wasn't a candidate for chemo, and had to have her lungs drained as she has ascietes, the put on oxygen. When she was discharged from hospital to the hospice I couldn't believe it was my mum, she was bed bound, had lost about 4 stone and just was the shell of the woman I have known all my life. 

    Whilst this may be a controversial opinion to some, I agree, like you, the NHS failed my mum hugely. Misdiagnosis, loss or time, discharging her too early for her to be readmitted and just moving her from place to place which caused her so much anxiety and stress. My dad in the end insisted she was moved to our local hospice (which is not NHS funded) so we could spend sometime with her all together 

    I just wanted to share my story with you, so I hope it eases some of the feeling of you being by yourself in this, as you're not. If you're really unhappy, I would suggest contacting the PALS office at your hospital to try and find some answers, but at the moment would say try to spend every moment you can with your dad. I can tell you that I spend most days being thankful I got to tell my beautiful mum everything I wanted to, and tell her how much I love her. Even though she was taken from me too young. 

    Sneding you and your family a huge amount of love for the coming time. Take care ️ ️

Reply
  • Hello [@LostCentipede]‍ 

    I wanted to reply as your story sounds, largely, very similar to my mum's diagnosis in January. I'm so sorry you're going through this. It's really cruel 

    My mum was taken into a&e end of January, and kept in hospital for a month at which time she was diagnosed with lung cancer that had spread to her spine, brain and liver. They said she wasn't a candidate for chemo, and had to have her lungs drained as she has ascietes, the put on oxygen. When she was discharged from hospital to the hospice I couldn't believe it was my mum, she was bed bound, had lost about 4 stone and just was the shell of the woman I have known all my life. 

    Whilst this may be a controversial opinion to some, I agree, like you, the NHS failed my mum hugely. Misdiagnosis, loss or time, discharging her too early for her to be readmitted and just moving her from place to place which caused her so much anxiety and stress. My dad in the end insisted she was moved to our local hospice (which is not NHS funded) so we could spend sometime with her all together 

    I just wanted to share my story with you, so I hope it eases some of the feeling of you being by yourself in this, as you're not. If you're really unhappy, I would suggest contacting the PALS office at your hospital to try and find some answers, but at the moment would say try to spend every moment you can with your dad. I can tell you that I spend most days being thankful I got to tell my beautiful mum everything I wanted to, and tell her how much I love her. Even though she was taken from me too young. 

    Sneding you and your family a huge amount of love for the coming time. Take care ️ ️

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