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.

 

  • Hi Ferrit, While you've got a week to focus on things I'd be inclined to make contact with the palliative team yourself. You definitely need advice ref diet etc, also access to all the living-aids which a good OT can organise and can make things so much easier. At the appropriate time you can get a hospital bed on the ground floor etc. Have you tried ringing any of the Macmillan help lines? I'm sure there will be people who can help and advise on what to expect.  

  • Certainly call 999 or macmillan help line.

    Any unusual things must be reported to medical people that is their job.

  • I agree.I’m sure you will be able to get some advice on how to help your dad.It’s sad that we have to make a fuss to get things done but sometimes it is necessary.My late mum was disabled and I fought to get her extra money for nursing care.It made her final months easier.From what you have written my understanding is that your dad would have things like abnormal magnesium etc treated if he presents with symptoms.His aneurysm’s location makes surgery too risky.It’s worth getting his urine tested just in case he has an infection which are very common in the elderly.I got mum lots of aids to help and a hospital bed via the occupational therapist who was very helpful.Best wishes Jane 

  • I wondered when each of us reach our old age , what we are going to do. Inwas no longer my partner's next of kin, hospital rejected to speak to me. 

    I doubt the purpose of life.

  • Thank you for your words but the hospital and doctor have done all this and sent him home for palliative care to take over, well that's what everyone has said..  meanwhile they are on their own, baring me and my brother hundreds of miles away.  I will speak to the Macmillan helpline on Monday

  • Be strong,  at least you have sibling who can support you. 

    I had none. My beloved one's friends even turned their back to me , accused me and influenced the family of my partner's not to contact me.

    I was not informed my partner’s time in hospital,  my partner’s passing,  funeral. 

    How cruel is that. 

  • Hi  . The Mac Helpline is open 7 days a week up to 8pm on 0808 808 0000. Best wishes.

    Best wishes to All,   rily.

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  • I’m sorry I wasn’t sure what care had been put in place already.I hope you get some help soon and Macmillan are able to advise.Best wishes Jane x