One month in, and still no prognosis

Hi All,

My dad went into hospital with high calcium levels around one month and they discovered he has stage 4 cancer. He's 80 years old, but is young at heart and has a very young family with lots to live for (i'm only 29, my mum/his wife is 60). They had a fantastic life, often going out for walks (he was on his electric scooter as he has athiritus) , mini breaks, and just enjoying their time together. 

We were due a prognosis on Thursday, up to that point they thought it was kidney cancer and we were expecting to find out how much time he might have (according to statistics ) and what treatment  & care can be offered to help manage it as we know it's incurable. However,  we were told on Thursday it is lymphoma cancer (still stage 4), that has spread to his kidney and also a few small spots in his spine. They couldn't tell us anything else about timings or how aggressive it is.   

The hospital have not got back in touch yet as we were being passed over from kidney specialists to blood specialists, so we have no official prognosis, no next steps, no treatment offered (apart from the one dose of radio therapy he's already had) and no body to contact to find out what is going on. 

He's been in hospital for the last week, he was taken in due to being very slurry and out of it. His blood pressure was 69 over 40 (the doctor couldnt quite believe it) but since then his blood pressure he returned back to normal,.He has had instances of slurring his words, and not really knowing what's going on before going back into hospital this time- however these have passed and he's returned to his usual sharp mind. 

However, the last 3-4 days he seems to be more slurry than usual,  slower in responding, isnt eating much and feels generally pretty rubbish. He is sleeping most of the time. He is also diabetic (type 2) but had a hypo this morning due to low sugar levels.

 

I am terrified we might be near the end and we don't even know it?!!  I live in London so am 4 hours away from my parents (Cardiff) and am returning every weekend, usually thursday or friday to Sunday. Given we are completely in the dark, i wondered is if worth me going home ASAP this week?  And does anybody have any similar experiences? I know timings are all personal, but i'm really worried he's deteroriating and it might be close to the end - and we literally have no idea or anybody to ask if this is the case!

The original doctor that diagnosed him said we were probably looking months to years, based upon assumption of kidney cancer. However, we had have no official prognosis since that first conversation (which was by a consultant, not specialist) 

So sorry for the essay, literally don't know where else to turn. 

Really appreciate any guidance/info!/sharing experiences! 

Rach 

  • Hi what your dad had was same as my partner its its called hypercalcaemia its calcium leaching off bones it makes you incredibly sleepy they should be monitoring it lizs came back after 3 weeks her calcium levels started to go up allso if your dad is not drinking enough water that makes it worse hydration is so important to cancer patiants i can't understand nhs not stressing it more .i would be on the phone chasing them up in the morning . If you cant get any joy contact the paitiant liason team all hospitals have them there independant and will chase it up.as to how long your dad has no one can realy tell cancer is so unpredictable thats one of the cruel things about this rotton disease . I would spend as much time with your dad as you can sorry i sound a bit harsh but thats cancer . You realy have my sympathys and your mum and family best wishs paul ps we were alocated a mcmillan nurse theres a mcmillan advice line numbers on internet they can arange pallitive care for your dad but its a post code lottery ime afraid ime from doncaster and althoe its not a town with best of names they realy look after there sick the backup liz and i got was second to non liz didnt make it but not for want of trying .