Terminally ill brother with Bladder cancer and Mets. to Lungs

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My 76 year old brother, with no immediate family apart  from two sisters who live in Kent, was sudendly diagnosed with this awful disease.  He is currently in hospsital (3rd time) he is unable to have chemo as they said it would potentially kill him. His prognosis is 12 to 18 months with chemo, and who knows how long without.  My concerns are around this latest admission to hospital and the urgency to get him home with carers, palliative care nurses, etc.  This in our opinion is putting the patient in an uncomfortable situation, as we know, as soon, as this is an option, I will be calling on his behalf, the CNS, 999 etc. from Kent.(He is not good on the telephone)  He lives in London//  Is it unreasonable for me to ask the palliative care team and OT team who are looking after him in hospital at the moment, to find a nursing care home, under continuing care, and then a hospice, rather than all the hullaballo which comes with getting care in the community.  We know him, and he is such a private person - never married had no family etc., and the fact that he could not manage before going into hospital, how can they expect him to be on his own at night and has also  gone down hill rapidly.  To me it does not make econmic sense on all third party involvement.  I want him to be settled in his last weeks/months and this plan sound horrendous to me.  Can anyone share any opinions on this ?  I am meeting with the palliative care team tomorrow - and I have raised these concerns.  Thanks for reading.  

  • Hello  

    Thank you for contacting the Online Community. I am sorry to hear your brother has been suddenly diagnosed with cancer and is unable to have chemotherapy. That’s such difficult news to receive and I can hear how worrying it is feeling just now: him being in hospital, and there seeming an urgent move to get him home with care in the community, but you feeling it is not the best fit for his needs.  I am really glad you have got in touch.

    It not at all unreasonable to raise concerns over the ongoing care being arranged and considered as part of a discharge plan. It’s important the team have a full picture of your brother’s needs and take into consideration your brother’s wishes for ongoing care. It’s understandable you want your brother to feel safe and settled.

    You mention you were meeting with the palliative care team yesterday, Glann. How did you get on speaking with them? Were they able to give information regarding continuing health care, nursing home and hospice options?

    If you’d like to talk the situation through further and ask questions about what you could expect from palliative care options, it may be useful to speak with one of our Cancer Information Nurses on the Support Line: you can speak with them 8am-8pm, 7 days a week on:0808 808 00 00 (selecting options 1 then 3) or via web chat (just select the subject: ‘questions for a nurse’).

    Our booklet Coping With Advanced Cancer may also be a helpful resource just now.

    With it sounding like such a worrying time, it also feels important to check Glann, do you have support for you just now? Please know we are here on the Support Line to support you and any other loved ones too: you can call us on the number above for emotional support, a listening ear or a place to ask questions when feeling stuck.

    I hope this information is helpful.

    Take care,

    Jenna 


    Information and Support Adviser


    Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days
    a week, 8am-8pm) or by email

  • Hi Jenna, thanks for this.  Yes, the team took on my concerns and at the meeting with my brother they explained all scenarios of care... He is understanding of the home situation, and the nursing care home etc.  It was all explained to him and us expertly.  At the end of the meeting (which took place at his hospital bedside) they said he did not have to give them an answer now, (as they still had to sort out differing meds etc., to help) he said he had already made a decision and it was continuing care in the care home.  I was quite relieved for myself, and I know he would be more supported in that situation.  ie moving him from bed to chair his pain goes through the roof, so I know, discharging him home with community care was fraught with anxiety for both him and us.  I feel much better (if that is the right phrase to use) that he will be monitored 24 hours... I am in my 70s and one year out of chemo myself, so I know having a caring husband 24/7 helped me through the horrible nights I had with chemo.. so I do think I know what the emotions can be like.  We can't change the outcome, but we do need to speak up for those who live alone in scenarios like my brother as he is not a very communicative person.  So for the present, a nursing home will be found in his immediate area of London, and both my sister and myself can get into London from Kent by train.  Thanks very much for responses, this site is so invaluable, and when I went through my treatment, it gave me a source of comfort to get information and comments from people in similar situations.