Palliative Care for Bladder Cancer

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My partners Cancer returned a 3rd time, and we are not at cycle 6 of chemotherapy, as this is all that can be offered. this will hopefully slow the onset of the aggeressive cancer, which has already escaped the bladder and his lymph and is travelling up his back. i am his partner of 47+ years and guide him through treatments/ attend appointments/help manage with life etc.

i am also managing my own treatment of breast cancer following the major treatments, ie surgery, chemo and radiotherapy, ie long term drugs.

Its getting difficult... because he almost doesn't or cant accept the importance of having to inform the doctor of all and any minor bleeds.

I'm concerned some days he may not be fully concentrating when driving, taking risks. i drive some days but he likes driving and insists on doing so.

He became nauseous after a morning bath - i'd suggested for safety best to have at night, rather than in the morning... but and then he fainted and fell onto me and the pavement. i put him in recovery position, but was frightened... I'm not sure how to move forward, i don't want to begin nagging as i've seen others, but struggle to find the right way of guiding him, any suggestions.

I'm exhausted, and we had an incident at work yesterday of which i've literraly just discovered, my friends horse had to be put down due to twisted gut.

I'm struggling with technology, the ilogic of it, neither of us having a smart phone,..why is everything so complicated... how do we pick up...

  • Hi  . Sorry to hear your partner's cancer has returned on top of your own issues. Are you getting any help ? It may be an idea to give the Mac support line a ring on 0808 808 0000. They may be able to advise on what help you could be entitled to, both practical and financial. Best wishes.

    Best wishes to All,   rily.

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  • Hello Yavapi.  Welcome to this friendly forum. It was your thread title that caused me to respond quickly because there may me some aspects that I share with your partner.  You are clearly trying to help your partner in diplomatic, tactful ways resulting from your long relationship, but you do need to seek further help so that both of you can withstand the stress of coping with cancer. Have you got a receptive GP or other medical professional with whom you could discuss your situation and thus receive advice as to the next step(s) e.g. an assessment to see how 'the system' may be able to offer physical help or other treatment options? Perhaps try the Macmillan organisation by using an appropriate contact from the green section below (scroll down)?

    I'm 75, male, still driving and was signed off by Urology in 2019 after a traumatic 2017/2018 period of treatment which included medium dose radiotherapy then two TURBTs, with many blood transfusions and over 5 weeks in hospital. My bladder cancer (7cm lesion) has never been 'graded' because severe bleeding made sample collection impossible. However, judging by the fact that it is now 2025 and my care is 'palliative' i.e. treatment is designed to ease pain/symptoms rather than attempt a cure, I can only assume that the cancer is marching relatively slowly. I do not suffer from nausea or collapsing now, but did in 2018. I do have a Foley urethral catheter which blocks frequently and rosé urine makes an unwelcome appearance at least 25 times per year. I live independently but seek medical attention whenever my symptoms cause me concern. My son and daughter do regularly assist with house upkeep because my mobility is poor (I walk with 2 sticks or have other mobility aids).

    I sincerely hope you are able to get the help and advice you both need.

    rily has said much the same without writing an essay Smiley.  Keep in touch!

    Ray

  • Dear Yavapi, have you thought of contacting your local Carers' Association? I can't promise miracles, as what they offer varies widely from area to area. However they should be able to signpost you to what help is available in your area. And many offer coffee and chat groups, some offer telephone support, many have the local council contract to do a Carer's Assessment, which is free and you are legally entitled to. This might be face to face or by phone, so you can keep it tactful as you prefer. Often there are events like summer trips too. 

    Do stay in touch with this forum anyway, we would all like to support you at this tough time.

    Denby

  • Hi Yes i picked up a leaflet when we wer last at christies, but they are not easy to get to and parking is extremely poor, but they are on the list for a visit when the weather improves. We are due at the hospital tomoz for his Nephrostomy change, and i intend to spend my waiting time at macmillans. I thank you for your speedy replies. unusually i don't check my emails daily, but am trying to catch up this weekend.

    Although i am caring for him, i haven't actually thought of myself as a carer, as he is my partner, and we care for each others cancer care.

    yavapi x

  • Thank you Ray, my partner not much older than you. and yes it is supportive care, no cure. Its the speed and everything different that i keep asking is this his cancer?

    Today he had a swollen ankle, the last time he had this, was an interim, break from his Fragmin, and the swelling around the ankle in the area of lymph - under reflexology. today i ensured he elevate his foor with shoe off, and flex every so often, after 3 hours the swelling had gone down. But he did mention feeling dizzy earlier. And this is never when driving.

    the journey to the hospital is horrendous in commuter time, but i've changed my own appointment to ensure i'm with him. and like i've just sadi to Denby i intend to have a chat at macmillans during the nephrostomy change.

    thank you for being on hand, i don't do facebook chat, but value your support, Yx

  • Hi yavapi,I’m so sorry to hear how difficult things have become for you both.Do try and get help if you can.I cared for my late mum and when I got cancer I had to reluctantly get some extra help.It did make a difference even having someone to sit with mum while I had a few minutes on my own helped.It’s tough enough caring without having cancer to deal with yourself.I hope you can get some help to allow you to rest a bit.I got ours through social services.Love Jane x

  • Hi Yavapi, I just saw your post and it reminds me so much of life in our household. Everyone has given you much good advice but maybe I can tell you how I cope with a husband of 49 years.

    Both of us have had/have serious illnesses (I'm the one with bladder cancer - currently in remission but before the operation it was touch and go whether they'd operate before the tumour escaped.) Since that time he drives me to appointments even if I say I could take the train  or a bus. (And, though I don't say it in case he feels hurt, might like a short time on my own trying to relax and not be a backseat driver.) He's looking after me in his own way.

    He's 80, still driving and while competent enough mostly I have noticed small lapses from time to time. (Though he managed to get us  back OK from a weekend 90 miles away earlier today.) 

    He feels he needs to protect me because but I generally insist on taking my turn. Luckily he had a knee op a few months ago and I had to drive then so he usually gives way for me to do my  bit. Shouting doesn't help so I try and say eg, I need to keep in practice or we'll both be stuck.

    I wonder sometimes whether he feels that if he steps back that'll be the end and he doesn't want to feel like that. At least not yet. Being on palliative care is scary I should think. But you shouldn't feel scared about saying what you need either. Maybe humour could help there. It must have been hard when he fell onto you. I'd have been scared too.

    At our time of life we do need to start having difficult conversations. Perhaps Macmillan or carers' organisations can help you with starting that. And also with the technology. We both have mobiles and couldn't manage without them. Or do you know any teenagers? They can help you get set up - it really isn't hard once you know how. 

    Good luck and all the best,

    Latestart x

  • Thank you so much, your words have hit the spot. i was glad i went with my partner to the hospital on monday because they have changed the layout. WE had to walk to the far end of a corridor just to book in, and then all the way back to go to the lower floor. It would have helped had they let myself go and book him in with the letter. Had i not been present he told me he would have gone home.

    They changed his nephrostomy only for it or the top dressing to come apart overnight, thank good ness for the overnight nurses.

    Whilst i was at the hospital, and he having his treatment i went for a long chat into Macmillans, they knew my name form the car park passes we've had before the blue badge.

    I offloaded and felt great afterwards. I needed to off load about technology also.as with my Brain fog i struggled to set up EETV. i even fogot how to do a Zip file that i learnt how to do only 2 weeks earlier. WE don't have anyone to ask, Friends just say "Its dead Easy", at which i cringe. I do subscribe to the helpful book company and they help with my laptop use. As for mobiles we have none smart devices, as i'm not confident having 'laptop' information to hand.

    We've just managed to secure the new fencing before the rains arrived, but 'sorry men, why do you take so long finding your tools and  not having them to hand to do the job, then putting them away without getting side-tracked. i just had to be patient.

    He did accept he needed to chase up his appointment times, seems the consultant forgot to follow up, good job the nurses are on the ball, and i had made notes last time.

    Thank you to everyone who has replied, I must go and complete my christie questionaire, now. yavapi

  • Although we don't know the Ct results not even had the Ct to check on if chemo is working, we've decide and booked a coupl of short week holidays to  a favourite cottage we know in north Yorkshire. we will plan, and hopefully that will helo keep us positive and something to focus on.,

    At least when the nephrostomy bag fails, or leaks, my partner is now quick to chase up the district nurses and get it checked, without out recourse from me.

    I still cry daily, and my sister explained its not Brain fog, but because myplate is full, new pressures just slide off, or have no-where to go, and so i cant remember stuff.

    thats better than the alternative i was worried about.

    Yav xxx

  • It is a lot to take in and process.The break should help you both and it’s something to look forward to.Thinking of you both.Love Jane x