My Dad has been given a terminal diagnosis.....

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Dad has been given a terminal diagnosis but had a first and final blast of radiotherapy last October along with 5 blood transfusions because he was bleeding so profusely.  Thankfully the radiotherapy did stop the bleeding, until now.

Dad is now having regular shows of blood in his urine (which he is having extreme difficulty passing).  He was due to have a repeat cytoscopy on 25th Jan which they aborted as they could not insert the camera so he is now going into hospital on 10th March (providing his pre-op checks he had on 1st March are approved) to have a cytoscopy with an epidural.

My dad also has end stage heart failure, only 20% of his heart is working along with kidney damage following sepsis in June last year.

Dad is also suffering bowel incontinence now on quite a regular basis and I don't know if this is connected to his cancer or something else entirely.  He won't call the Dr about it so things are getting very messy and he is getting upset and depressed about it.  He will only leave the house to go food shopping and is eating far too much (I guess it is really the only pleasure he has left now).

The consultants have failed to give some sort of prognosis but I feel if he knew, he could settle himself, knowing it is not going to go on forever.  I don't really know what else I can do for him so wanted to reach out for anybody who has / had a similar situation and for any information or advice people can offer.  I am also disabled and the stress, worry and everything else that goes along is taking its toll on me too.  Any information or advice would be gratefully received.

Thank you so much.

  • Hello,

    I'm afraid I can't give any advice as such, other than ask whether it might be worth you speaking to your dad's Macmillan nurse (if you haven't already done so, of course); I just wanted to send you a massive, massive virtual hug at such a horrible, horrible time. My dad has just been told his bladder cancer has metastisised to his liver and he's been given three to six months to live, although he has been offered chemo to give him a little more time. Cancer really sucks, doesn't it? I hope your dad's - and your - situation is resolved as painlessly as possible, and wish you luck in adjusting your life when the time comes. XXX

  • Thank you so much.

    Heartbreak doesn’t cut it.

  • Thank you so much for your very kind words.  Cancer has had a massive impact on my life before now with my 34 year old step-son who didn't survive it.  Cancer really does suck.  Dad doesn't have a Macmillan nurse and now his cancer is terminal, oncology have sent him a letter saying basically good luck, get on with it there's nothing else we can do.  If you have any problems contact urology.  This is what we did the last time he was bleeding (heavily with large clots) and they left us sitting in A&E for 7 hours.  Where is the dignity and care??  I'm sorry you have this awful situation going on too.  It just feels so frustrating doesn't it.  Hugs back sweetie. xx

  • Dear Spannermommy, so sorry to hear the situation. Try Marie Curie??

    A big e-hug from me too. Have you contacted your local Carers' Association? Some offer more than others but you are legally entitled to a free Carer's Assessment. Possibly over the phone if more convenient. In some places Social Services do this but in others they have contracted it out to the Carers' Association. You are entitled to support for yourself. Also have you looked at the Carers' Forum on here?

    best wishes, 

    Denby

  • We live out in the sticks in a very rural area and seem to be limited to what help we can get.  We struggle to get an appointment even with a Dr so heaven knows what it will take to get a carer.

  • Hi, when I wrote carer's assessment, I meant that you are a carer for your Dad and are legally entitled to some support.

    Whether Dad should have carers calling eg to help clean him up is a separate question.

    At least you may get advice for yourself by phone, and maybe Zoom 'coffee n  chat' groups where you can sound off, get tips, and generally feel less alone. Many places also offer former carers' groups to join when you are bereaved.

    Hope this helps,

    Denby