23/5/20. My dad was diagnosed with advanced prostate cancer which has spread

to his spine pelvis ribs knees etc. PSA into the 1000's. He is starting to deteriorate. He's had blood

transfusions. Hormone therapy. Zoledronic acid

infusion.  Looking for any support advice anyone can give.  Watching him in the Pain he is in.  Is heartbreaking.  Oncologists. Have been shocking. Along with their team. Any advice greatly appreciated x 

My Dad was diagnosed in April 2020 during a covid lockdown hospital admission due to neurological falls , where he was told on his own aged 79 that he had prostate to bone cancer - exstensive. Less than 12 months prior a urologist told him no cancer. 
he was put on hormone therapy which I think sent him crazy , now on research I think it irritated the bone mets (degarilix) . 
he rollercoasted into terminal agitation with only district nurses being our stalwart (covid). And passed away in July leaving me in a state of blame. 
no health professionals, no support , nobody but the amazing nurses would come out. Covid hastened the passing of my dad (he never had that but no medical support because of covid) and has put the weight of his death on me . I asked for the meds. 
prostate cancer is a silent killer. Dads psa levels where always low. 

Oh I know the feeling. 2 years after losing dad I still say sorry to him every night.  He went to GP in pain and not eating and they sent him home with indigestion tablets for a week. I found out and dashed up to see him, got more doctors appts, went on 3 week wait list for ultrasound scan, but he collapsed well before then and I had to call 999.  I then find out a year previous he was discharged from hospital by consultant after diagnosis, to GPs care with hormone therapy only,  no other help, no care, no nurses. This was all pre Covid.  I find it hard to cope with feeling I let him down,  because I didn't realise how bad the system can be here.  It pains me every night.

I hope your dad gets the treatment he needs quickly. Covid has caused so much effect on people like our dads where support is weak or non existent.

ive been off work since loosing dad I thought I was going mad but after seeing (phone)an occupational therapist (work stages when off) she was clear that what we had been through was very traumatic, the hospital admissions under covid as we couldn't go , half information being passed, nobody listening when I rang in and missing relevant facts, he came back worse every time to the point I said he wasn't going back (which I have to live with) 

dad did not get prognosis they said age and other health conditions, only the degarilix , I rang his hospital prostate keyworker asking if it can cause confusion she packed me off to check for infection (it wasn't) now when you read mets on back can cause severe pain following treatment I think it sent him crazy. 
I have a lot of haunting thoughts I have to learn to deal with around the decisions I had to make. But I'm also getting clarity that nhs was not good it was the time covid first occurred and nothing else mattered.

4 months Saturday. Deeply disturbed

Thoughts and hopes your dad is better cared for xx

Daisy w - it's just awful isn't it . 
dad lived 4 months after being told on a ward on his own. Systems are terrible

Yes, it was so bad pre Covid, i also lost my mum the day before her long wait for her appt with the hospital consultant to discuss her test results and working elsewhere I didn't get the chance to see her, that  I constantly think about what people are going through in today's situation with the extra heartache and 'what ifs' it brings.  Replay it all in my head.  I wish I could go back and change it all or at least be more prepared and have known what to do.  I spent hours on the phone, then when in hospital looking for a nurse on his final days to help with the pain, dehydration and his discomfort, with no luck,  when I should have been with him, talking to him. I mean, aren't hospitals meant to have pain relief?  He wanted to be home we wish we had managed to get him back there, so you did the best for your dad.

Work let me take off the time to his funeral, then told me  I couldn't take unpaid leave I had to use my holiday. It didn't do me any good going back so soon as it's so busy trying to organise funerals you don't have time to grieve,  so I think you really need that time off so take whatever you can xxx

My goodness you have been through so much Trauma I'm so sorry about both your mum and Dad.

you are right , pain relief should be the first thing addressed for anybody but certainly whilst sat in a hospital bed. My Dad kept being admitted with infections but each time he came home he was worse than when he went in and I couldn't visit or speak to the same person over the telephone so I totally get what you went through. Our brains have to keep churning through things and my torments currently are the usual what ifs ... if he went I. Could they of made him better to be here longer but I think and certainly going off your experience he was better at home.

nhs focussed on covid so we no chance.

Be strong and know you where fighting for him till the end. 
I asked for pain relief and got it but that started the end really so I feel that I made that decision and it's my fault. But that's our brains but I think now after reading your experience it was good he got it. 
nobody can ever say anything to make it easier we have to learn to deal with it but one things for sure what we did and tried was for complete love of hot Dads. How lucky are we to have had them ️

We certainly are lucky to have had the best dads in the world to us :-)

Yes, if I had had more time, I would have sorted out pain relief and had  him at home, that was what he needed.  He went downhill in hospital. They confined him to bed.  It was only a few days hence I didn't have time to take it all in.   No-one monitors if they eat or drink, drinks left out of reach all day, food left in room for hours uneaten out of reach.   I took in some vitamin drinks and straw but he used to slide down those slippy beds and it was hard to get help to sit him up so he could drink. 

 To make it worse we nearly had to cancel the funeral and would have had to leave it until after  Christmas because it was a hospital he died in, they took him off for post mortem.   Everything is controlled by the hospital, we couldn't stop it.  I cried when I finally got to see him in the chapel of rest.    

If I had to do it again, he would be at home where he wanted to be and not in a hospital environment.  Neither my mum nor dad wanted to be in a hospital, I understand why now so believe me you made the right decision. I spend time wondering how I could have avoided it X

PS I know its not right decision for everyone, but your instinct was telling you what to do,  as you and your dad had given hospital a go already, and especially with today's situation you did what was best for your dad.X

I also have some slight closure with mum now as she died very suddenlly at home and I often wondered if we should have taken her to hospital again.  But I now know she would have hated it X

It's just awful to think that the NHS is not the best place to be when your unwell at at the most need for medical and personal care. I wish for your mind you could of got your dad home but he'd know you tried your best. It's so hard seeing them when they have passed. My dad looked at peace and rested more than he had the weeks before.

it's took a while for me to be able to talk about things but talking and on sites like this make you realise your not alone and not alone in the ways your brain is dealing with things. Have you tried counselling ? Just talking and advice on dealing with your thoughts really really helps, it does not change a thing but it changes the way you cope with it. You have lost both parents in different traumatic ways it's a fair challenge to deal with.

even our conversation has helped me , it's realising we are not alone , and we have both experienced failures In the support our parents received when most needed. 
it's just awful.

Did you just look online for counselling?  It may give those around me a break, as I think this, like many things,  is something you only really understand when you go through it, so it's hard for those around you too. My mind is often elsewhere, concentration sort of gone as thoughts still drift back to everything that has happened at odd times. Less frequently now, so it's going in right direction, but people around expect you to be 'back to normal' so quickly and to just go on as before.

I think that's part of it being so hard, people thinking your ok now. I'm very much aware of people saying how are you doing and just expect a yeh ok how are you. But they really don't want to here well I feel awful , I'm traumatised, I'm sobbing at night and feel terrible during day .... they just don't and that's when people start avoiding. 

I had been off work so got referred to occupational therapy (they do it with everyone) she was a nurse , I told her what happened and how I felt, the thing that first stuck in my mind for me was that she really feels for anybody needing medical help non covid during covid times and that what happened was traumatic. She said counselling which I was sceptical about. She wrote back to my work. 
my gp had given me a number but I believe there's a waiting list but I'm very fortunate work has paid for four sessions. She isn't a specific Grief counsellor (which I think would be better) but what's helping is someone who doesn't know me or what's gone on actually saying No This Is Traumatic. She's explained why my brains doing things and it's normal and how to handle myself when I get haunting thoughts. 
last one I had about two hours later while driving I got an affirmation thought on why id done something and what led me to that decision. I did lift a bit in my head.

I think at the point you are at it's worth a try. 
 

The NHS system keeps blaming covid. Covid will have killed far more people  through lack of treatment and diagnosis. Just had a pals response to my late step father who was being treated for bladder cancer. Many irregularities in their findings with notes and info I have. Last April my step father was supposed to have a resection to remove a recurrent tumour at grade 3 non muscle invasive . After 7 failed spinal anesthesia injections they put him to sleep and only did a biopsy of the tumour which would have been the same as his first diagnosis in 2019. Something went very wrong with this operation. My father told me it was a disaster. The surgeon who did the biopsy was certainly not as well trained as his first surgeon. In June 2021 I took my step father to A&E as he was complaining on back pain and sickness with some constipation. They had left the tumour in situ. In these two months following a mri scan he was told alone he had widespread metastatic disease on his spine. I have the mri scans and would love it if somebody medically trained would give a second opinion. Taking hime to A&E was probably the worst decision of my life I feel so guilty. Needless to say they offered him little hope slapping a dnr notice on him which we knew nothing about until his death. He was prescribed a cocktail  of medicines enough to kill of anybody inc morphine which he never really needed and refused to take. He was placed in a ward with no social distancing with other very ill patients. Aventually he was moved to a rehab centre where he was given a room of his own but went down hill from here on. He caught pneumonia on his hospital stay and died on 16th July from DVT and Pulmonary Embolism. The pals report stated he was given a drug to prevent that but I  found no mention of that drug in his medical notes. There only goal along with useless social services was to discharge him home with a hospital bed in lounge with a mo lift and 2 carers twice a day . They expected my 86 year old mother to cope with this when she had been so dependent on my father. The only positive thing was this nightmare never happened. The NHS really have written off frail patients over the last few years and I am sure I am not alone here with people who have suffered similar. I may now take my complaints to the parliamentary ombudsman as neglect of surgury and hospital care can not be allowed just because someone has a serious of life limiting illness. My father walked in to A&E and after 6 weeks in NHS care was unable to look after himself or get out of bed without mechanical assistance. 3 x Mri scans showed no interval changes on his spine and were only given to him on admission to A&E. It is my belief failure to perform the turbt caused his cancer to spread.

The NHS system keeps blaming covid. Covid will have killed far more people  through lack of treatment and diagnosis. Just had a pals response to my late step father who was being treated for bladder cancer. Many irregularities in their findings with notes and info I have. Last April my step father was supposed to have a resection to remove a recurrent tumour at grade 3 non muscle invasive . After 7 failed spinal anesthesia injections they put him to sleep and only did a biopsy of the tumour which would have been the same as his first diagnosis in 2019. Something went very wrong with this operation. My father told me it was a disaster. The surgeon who did the biopsy was certainly not as well trained as his first surgeon. In June 2021 I took my step father to A&E as he was complaining on back pain and sickness with some constipation. They had left the tumour in situ. In these two months following a mri scan he was told alone he had widespread metastatic disease on his spine. I have the mri scans and would love it if somebody medically trained would give a second opinion. Taking hime to A&E was probably the worst decision of my life I feel so guilty. Needless to say they offered him little hope slapping a dnr notice on him which we knew nothing about until his death. He was prescribed a cocktail  of medicines enough to kill of anybody inc morphine which he never really needed and refused to take. He was placed in a ward with no social distancing with other very ill patients. Aventually he was moved to a rehab centre where he was given a room of his own but went down hill from here on. He caught pneumonia on his hospital stay and died on 16th July from DVT and Pulmonary Embolism. The pals report stated he was given a drug to prevent that but I  found no mention of that drug in his medical notes. There only goal along with useless social services was to discharge him home with a hospital bed in lounge with a mo lift and 2 carers twice a day . They expected my 86 year old mother to cope with this when she had been so dependent on my father. The only positive thing was this nightmare never happened. The NHS really have written off frail patients over the last few years and I am sure I am not alone here with people who have suffered similar. I may now take my complaints to the parliamentary ombudsman as neglect of surgury and hospital care can not be allowed just because someone has a serious of life limiting illness. My father walked in to A&E and after 6 weeks in NHS care was unable to look after himself or get out of bed without mechanical assistance. 3 x Mri scans showed no interval changes on his spine and were only given to him on admission to A&E. It is my belief failure to perform the turbt caused his cancer to spread.

I am so heartbroken reading this, I lost my parents pre COVID and had dreadful experience with my dad in hospital, he went in terminally ill but capable, still trying to do his internet shopping, but after a few days in there went downhill, in pain still and unable to get our of bed, severely dehydrated I believe.

I too still have severe guilt of taking him to hospital, but several years on I realise that it really should have been the best place, so I did my best.   A doctor said she wanted to stop treatment as he was 'taking up resources' as the nurses had to help turn him every 2 hours.  I was distraught as in his 80s he had worked since 16 and only been in that hospital a few days and never taken up their time before.   I don't think I will fully get over it.    Yes, treatment of 'geriatrics' as they call them can be appalling but just remember you did your best, we just aren't prepared for this.  I see so many cases in one particular hospital that I wouldn't now allow anyone I know to be taken there but that is with what I know now,not back then.

Thanks for your kind words Daisy. yes his consultant a Dr of Geriatric Medicine was one of the coldest uncaring people and enough to scare any patient to death.   Even she admited she did not know what was causing him to be able to stand up or get out of bed! Even my dad told me i think they are trying to kill me. No wonder he stopped taking his morphine.

so much for the governments war on cancer. great video on brandnewtube about it by a now infamous DR!

I am really genuinely sad for your loss.

you are more than correct and as I already believe the number of people dying due to non related covid but due to the covid restrictions will far outweigh covid deaths. 
my Dad was during the first lockdown became unwell, he was regularly discharged being treated an issue not a cause, the rush to pack people put leaving empty wards was astonishing. A lack of diagnosis caused further admissions, on his own , unable to hear us over a telephone. Told on his own of a terminal diagnosis. 
he told me things on the way home from one admission I will take to my grave , nobody passed anything onto me on discharge giving no reason to disbelieve what he told. An intelligent and until then active man written off. 
He was I've no doubt. 
My horror is the rest of my life questioning if I had only, what if I ? 
failures where massive , unless of course you was admitted with covid.