Dads Diagnosis Limbo

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Hi, I’m completely new here and feel completely lost.

After a fall my Dad was taken into hospital.. a long story short with only unexplained weight loss symptoms my Dad has been diagnosed with Kidney cancer which has spread to his liver and spine. I haven’t had his biopsy results back yet but they are due this week and the MDT meeting is Wednesday.

Im totally a rabbit in headlights. My best friend has become so unwell in the space of 4 weeks. Morphine side effects alter his awareness and he’s had multiple infections and has causes him delirium. I can’t believe how un symptomatic this cancer has been? I am absolutely petrified to be told that it may just be a matter of time and palliative care is all they can do but at 75 and in a frail state I know that is almost inevitable. I know this will be felt by many but my world feels like it has fallen apart and I don’t know how to process this. 

Can anyone please suggest any help groups? I am my dad’s next of kin. My sister lives on the other side of the world. My mum and dad are divorced but have a good friendship but I feel the weight on my shoulders. I want to get support for myself so I can give him everything and be strong. 

  • Hello AHZ,

    Welcome to our group, it’s the one no one wanted to join, but we are friendly and supportive….and above all do have some understanding of what you are going through, ( although everyones experience is different).

    What I can say to you is that this is an extremely difficult time when you have a diagnosis and no treatment plan…..as you have said, you are in limbo ….and it’s horrible. Try if you can not to go down the “what ifs’ until you know something for definite. 

    There is a macmillan helpline who are very supportive and you can always post on here……..you are right, you do need to look after yourself to be able to help your lovely dad .Sorry this is a shirt message, but I am short of time.

    Sending you a big hug. Jules x

  • Hi - try Kidney cancer UK website.  They have some support groups, mostly on zoom I believe.  Where are you based?  This forum started up a Glasgow meet-ups.  Also do you have a Macmillan centre near you?  They do F2F support, informal 1-2-1s and they have themed sessions too.    

    There's the helpline on here, too; freephone 0808 808 00 00 from 8am to 8pm every day.

  • Thank you to all replies.

    Cancer doctor has given dad 6-8 weeks …. This news has shocked me to the core.

    Does anyone know if prognosis has been longer before in any cases? He has aggressive cancer in the lining of his kidney which has spread to other areas of his body.

    Desperately trying to get him in a hospice but waiting for beds. 
    He doesn’t want to go home as it became a burden to him before he left due to stairs and size etc and he felt trapped there so we’ve opted for hospice I have heard they do great work x

  • Snap I am lost too......mum has hidden an open wound on her breast probably been there for 5 or 6 months.  This has spread to rest of body.  No treatment 

    Who do we speak too

  • Hi AHZ

    I'm so sorry you've had this news, it must have been a shock. The oncologist will have based their prognosis on lots of factors, but it is an educated guess. It does sound though, as your dad was finding being in his own home quite difficult, that the hospice option is the best one for him.

    It will probably be the best scenario for you too....you will know that he is safe, comfortable and very well cared for, and you will be able to visit with less restrictions than if he stayed in hospital.

    I do hope that a bed becomes available soon, and that you keep posting on here! 

    Virtual hugs

    Candysmum

  • Hello Kibs

    You might get more suggestions and answers if you put up a separate post about this.

    I would suggest phoning the Macmillan helpline first! And her GP.

    Hope you can get some help and support

    Candysmum

  • Im SO sorry you are going through this. My mum had breast cancer 10 years ago…. She’s in remission still now thank fully.  My Dad sadly isn’t as lucky. Please don’t feel alone if you speak to nobody else speak on here!!!!  I have seen they have a chat online here and also a number which is 8am 8pm.

  • Thank you so much!

    Has anyone used the helpline?

    This may sound silly but I don’t know what to say… or start with. I just feel numb 50% of the time then when I’m home alone it seems to flood over me like a wave and I find myself petrified and upset x

  • Has anyone used the helpline?

    Yep, a couple of times.  Professional, open and friendly.  Can't fault them.  

    You could just start with describing the situation . . . .  they'll have heard it all before.  

  • Thank you x