My Dads bladder cancer journey and the now the hospital has said “no further help” - looking for some advice

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My Dad currently 89, noticed some blood in his wee about a year ago.  Doctor sent him off to specialists and cut a long story short they also found he had an aneurysm so possibly not a good idea to operate.

Fast forward 12-18m and he has now twice been to hospital for deranged bloods, he had a transfusion the first time not sure what they did this time but they tried to insert a catheter on a local but this failed.  Below when it says “family” it wasnt me or my brother but his elderly wife (not my mum) and her daughter in law.

the document he came home with said:

Clinical Summary

Mr my dad presented to the hospital with deranged bloods taken at sm local Hospital by the renal team

PM: Bladder cancer, known R hydronephrosis, CKD, large AAA

On admission,eGFR 10(20) creatinine 409 (240), magnesium <0.2, Calcium 1.51, Hb 85

Asymptomatic of all symptoms. still passing some urine naturally

US renal showed extensive bilateral hydronephrosis

Reviewed by urology - Mr “my dad”  declined nephrostomies, urology informed him this would mean for palliative care Converstation with Mr “my dad” and his family, informed them that he likely has weeks only to live, although as he is passing urine this may not be accurate. Mr “my dad” had thought he would still have 2-3 years remaining

Referral made to local palliative care hospice for follow up at home

Unfortunately due to workload palliative team unable to review as an inpatient

Magnesium replaced intravenously

Advised Mr “my dad” not for routine blood tests unless symptomatic and able to treat underlying cause of symptoms such as hyperkalaemia

Reviewed by therapies team prior to discharge

so i get why he doesn't want to risk further invasive surgery, but is it right they will not help him further as they have been doing before?  Currently he is at home and baring going to the toilet often he is in amazing shape and spirits.  He says he is not ready to chuck in the towel…  any thoughts or advice would be massively appreciated.

 

  • Morning Ferrit, so sorry to hear your dad's news which must be difficult to bear. x  It is particularly upsetting because of the Palliative Team's inability to come and see him in hospital, which should have given you all some hope that his care would continue although no cure can be attempted. No one can accurately predict how long a person has to live. All sorts of factors like your father's spirit will affect his longevity. He has after all reached a good old age already thanks to his fitness and attitude. The most important factor seems to me to be his comfort and quality of life, which can be managed very successfully by a good palliative team. I hope they will make a home visit asap. Things may well be slower because of Christmas and New Year but I would expect the palliative team to visit soon nonetheless. I had a good friend who was a palliative nurse in the community, their care was wonderful and many of her patients did live years rather than months. The crucial factor is the quality of his life. Sending you love and best wishes H x 

  • Thank you for this reply.  We are in a bit of limbo, hopefully someone will be in touch soon

  • Hi there,  hope you're OK,  nothing to add sorry,  my Dad passed away end of September,  I'm still finding things pretty rough.  

  • Hi,

    Sorry to hear.

    Keep positive spirits and mood. 

    Drink warm or hot water.

    Eat boiled millet organic soup.

  • Thank you, what is your reasoning on the "millet organic soup"?

  • Hi,

    It is organic,  and most suitable food for stomach while not being well.

    I blame myself as I didn't find all these information while I was caring for my beloved one.

  • so a few weeks on and since out of hospital.  We are still waiting for the conversation with the Palliative care people.  My dads elderly wife is doing her best.  He is weeing normally ish, when I say ish he is going to the toilet a lot, some times three times and hour and its wearing him out.  He is hardly eating, mainly soup and water.  He had an accident last week and wee'ed out a lot of blood, we have been told this normal????

    Is there anyone here can outline what could be happening and what we can expect over the coming weeks?

    I am guessing once he stops weeing he is trouble?

    I have been out of the country for the past two weeks but now back so my brother has been doing as much as possible, now I am on duty next week

  • any other suggestions?  Information would be appreciated

  • Sorry to hear.

    Something wrong with health care system including NHS.

    At the end of the day is human terminate human.

    Rare human realising and learning 

    Sad