Sudden big rise in PSA after moving to Prostap

User

Posted 18 Sep 2020 at 17:11

Hello all,

I am writing this about my grandfather who was diagnosed in May with Advanced Metastatic Prostate Cancer, he did have a PSA test in November 2019 and it was low but during lockdown he lost appetite, lost weight and had a change in taste.

He was taken into hospital and his PSA was around 550, they started him on Degarelix monthly injections and his PSA had drastically dropped to 0.7 I believe but a few months into injections they put him onto Prostap 3 monthly injections and sent to his doctors surgery for them to administer, he has had a bloodtest after being on Prostap for roughly 2 months and his PSA has drastically jumped to 700.

The oncology nurse said the sudden raise could be due to a UTI as he has a catheter in, but he has recently began losing appetite again and increased bone and joint aches since being on Prostap. The oncology nurse said they cannot do anything at the moment because he still has the three month course of Prostap in his system but they will re-do his bloods and check it again.

I feel worried at the fact his PSA is very high at the moment and they can't do anything, I also thought it was bad that I had to call the oncology nurse to find out the blood tests results as surely that kind of PSA reading would be worthy of a phone call to the patient to let them know?

I did speak to a specialist nurse on here and they said the cancer could of become resistant already but it is rare that it happens this fast.

Sorry about the massive amount of information

User

Posted 18 Sep 2020 at 17:28

Lots of questions about this. When he was changed from degarelix to prostap, was he also given 4 weeks of tablets (called bicalutimide or casodex) as well? And do you know why they changed from degarelix to prostap?

If his PSA went from normal last November to 550 in May, it does sound like a very aggressive form of prostate cancer - has he had biopsies and if so, can you get hold of the diagnosis details for us? Specifically, does it say that he has adenocarcinoma or is it one of the other types of prostate cancer?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Sep 2020 at 17:31

He needs a testosterone test, to see if he's at castrate level, or if the hormone therapy isn't working.

Lyn, bicalutamide isn't normally given when switching from Degarelix to GnRH Agonists. I don't understand why not, because from my understanding of the mechanism, a testosterone flare would still be generated.

User

Posted 07 Oct 2020 at 11:10

Pain meds can do that, as you say it’s a rollercoaster but with Covid adding unwanted twists.

Take care.

Ido4

User

Posted 07 Oct 2020 at 15:04

Very true indeed! He seemed more with it today when I managed to get hold of him but now he has tested positive for COVID, one thing after another.

Just read your profile Ido4 and very glad to see how well you are getting on

User

Posted 07 Oct 2020 at 19:49

Thanks, so sorry your Dad has Covid to add to everything else.

Ido4

User

Posted 07 Oct 2020 at 23:13

You could ask for a Zoom meeting with the oncologist or lead oncology nurse afterwards, on the basis that you don't believe your grandad has capacity (quote the mental capacity act) and will not be able to make decisions (about withdrawal of treatment, etc) or recall the essential information to pass on to his next of kin afterwards.

They may say that they need your grandad's permission to share info with you but if you keep pushing the mental capacity act at them, you might get somewhere. Who actually is his next of kin?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Oct 2020 at 18:23

I am so, so sorry - if they can get him into a hospice, that will be much better for him and your family. Hopefully, the hospital & the GP can get their act together to put the hospice referral in asap and he can transfer straight there without another humiliating stay on a ward that can't meet his needs.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Oct 2020 at 19:54

I’m sorry to read this. I hope they can get him in a hospice and make him comfortable. Thinking of you all.

Ido4

User

Posted 12 Oct 2020 at 20:23

Really sorry to hear this... hope you/they can get the your grandad comfortable and free of any pain.

Its so sad you/we have to fight for basic humane treatment for our loved ones....

my dad (84) is currently advanced prostate cancer, and while he is not quite end stage, things are starting to become a struggle for my mum etc... basic things like them not sorting his Abiraterone and 10mg steriod prescription - he run out for 3 days, no idea about Abiraterone but you can’t just stop 10mg steroids! No one followed up or apologised and my dad was not so good for a couple of nights and could not eat.

Hope your grandad gets the dignity and treatment he deserves.. I will be fighting for my dad.

xxx

User

Posted 12 Oct 2020 at 21:19

Originally Posted by: Online Community Member

I’m sorry to read this. I hope they can get him in a hospice and make him comfortable. Thinking of you all.

Thank you very much, I hope you are well

User

Posted 20 Oct 2020 at 20:15

Thank you for everyone on here that gave me hope and support, my Grandad was transferred to another ward where the nurses seemed to be very understanding, they did not have a single room for him but he ended up on a ward with others (not ideal as they were all going home) the nurses told us they would take it in turns to sit with my grandfather when we weren't there.

I had multiple visits with him but the last few days we was completely out of it and the hospice said he was too ill to move there, my lovely grandad passed away on Sunday whilst one of the nurses were holding his hand. I guess his cancer was just too aggressive and they also believed it had infiltrated his bone marrow so he was at risk of dying from a big bleed but thankfully that didn't happen.

If any of you are reading this, please have a toast to my grandfather. I send my love and well wishes to everyone with PC and also their families, actually sod that I send my well wishes to everyone with cancer or a terminal illness.

User

Posted 20 Oct 2020 at 20:55

Joey

So sorry to hear of your loss, please accept my sincere condolences. I will raise a glass to him tonight. Love and hugs, take care of yourself.

Thanks Chris

User

Posted 20 Oct 2020 at 21:26

Originally Posted by: Online Community Member

Dear joey

I will raise my glass for you dear grandad... so sorry ..it sounds like he had a peaceful passing, though probably I am sure you would have wanted him out of hospital. its a total crap disease...isn’t any terminal one?

My dad is not doing good (maybe a similar age to your grandad 84?), he’s at home, but he spent his lifetime very fit and healthy, so now he’s becoming very weak to get up, eat etc ... he does not like to make any fuss but has mentioned the doctor twice in last 2 days but no answer back from Macmillan nurse ...it goes to answer machine.

Sorry dear Joey, sorry you have lost your beloved grandad to this disease and bless you for thinking of others.

best wishes

anne

Thank you Anne, I am sorry to hear that your dad isn't too good, if he doesn't make a fuss usually but he has mentioned the doctor in the past few days I'd maybe recommend calling out his GP to visit him at home or maybe even worse case scenario call an ambulance to get the ball rolling.. After all your father does have advanced prostate cancer so it isn't like you are wasting the ambulance crews time, for us it was like an endless loop when trying to call oncology/urology or even the GP but the only progress that was made was actually during my grandad being in hospital.

I hope your dad is helped soon and all of you keep strong,

Joe

Dear Joe

thank you so much for taking time to advise this when you are going through the toughest time. It is so crap....

i have left a message for the Macmillan nurse on their voicemail so hopefully she will respond tomorrow. I just hope we can keep dad out of hospital now as it seems with Covid visiting would be very difficult.

you take care & raising a cheers to your grandad and brighter days for you.

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User

Posted 18 Sep 2020 at 17:28

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Sep 2020 at 17:31

He needs a testosterone test, to see if he's at castrate level, or if the hormone therapy isn't working.

User

Posted 18 Sep 2020 at 18:20

@LynEyre in November he only had the PSA test and had a normal reading but they did not give him a prostate exam, he has had no biopsies I believe because of his age (91), they did a CT scan at the hospital and then diagnosed him with Advanced Prostate Cancer with multiple sclerotic lesions on the bony pelvis and spine.

I am not 100% sure why they did change the course, but I believe it was to limit him having to go every month for the Degarelix, he didn't have any side effects with the Degarelix and after his first Degarelix injection his PSA dropped to normal range. He was not given a course of tablets before starting on the prostap, the hospital gave him a one month course of Prostap without saying, it was only when I read a copy of the letter they sent to his doctor discharging him to his doctor for 3 monthly Prostap injections.

I am not sure how true this is but the doctor at his doctors surgery said the NHS are having trouble getting hold of Degarelix because of COVID

Thanks,

Joe

User

Posted 18 Sep 2020 at 18:25

@Andy62 yep, I didn't understand why either if it would still cause a tumour flare. I believe they are going to repeat his bloods and see if the result is the same there and see where it goes from there, the ONCO nurse said it could be a UTI but we did give the Urology department a sample so she should of had it when she was saying that, I think I will have to chase it up again like I did with the PSA results

User

Posted 18 Sep 2020 at 19:05

Update, his testosterone levels are fine

User

Posted 18 Sep 2020 at 20:53

What does that mean? They shouldn't be 'fine'. What is the level?

Degarelix is being given to men admitted to hospital with COVID-19 as part of the HITCH trial in the US (and maybe elsewhere too), with it being very fast acting hormone therapy. That could be causing a shortage. The monthly injections also don't fit well with minimising physical contacts with clinicians.

Edited by member 18 Sep 2020 at 20:58 | Reason: Not specified

User

Posted 18 Sep 2020 at 21:12

@Andy62 The oncology nurse said that his testosterone levels are fine which I'd say means it is still at castrate levels? She does not seem worried about the testosterone levels rather the PSA levels

User

Posted 19 Sep 2020 at 00:11

Originally Posted by: Online Community Member

I was thinking the other way round - that the GP / surgery nurse had perhaps not realised that and had given him bical as they usually would with a new patient starting on prostap ... the rise could then have possibly been a very dramatic AAWR as the bical stopped.

I think the theory is that there is no tumour flare if the patient is already on degarelix and therefore at or below castrate level. Tumour flare needs some testosterone to be floating about.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 19 Sep 2020 at 00:20

Joey, this is a horrible situation but if he was my dad I would:
- ask the GP practice to confirm that it was indeed the 3 month dose that was administered and not just a 1 month dose by accident
- if possible, confirm where the Prostap was administered - did they put it into his thigh, bum or stomach?
- ask the oncology nurse to get an urgent view from the oncologist about whether it is possible for him to revert straight back to degarelix since that seemed to have worked well
- also ask about a referral to pain clinic or similar to get his pain meds sorted out properly

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 19 Sep 2020 at 10:01

Originally Posted by: Online Community Member

Thank you and good morning Lyn, I think it was the three month course, I am almost sure it said Prostap3 on the box as we had to collect it from the pharmacy and take it to his doctors surgery but I will call his doctor or pharmacy and double check on Monday.

I believe his doctor administered it in his stomach/groin.

I did ask the oncology nurse if it was possible to bring forward his oncology appointment as he is yet to have one but she said it is not possible, he has a Urology appointment next week and she has asked the Urology nurse to give him a thorough check over and repeat the PSA test then if needed get someone else to come and see him.

For pain meds he is currently on Co codamol but he isn't taking them as he should which I don't think helps, he rather waits for the pain to start and then takes them and is currently only taking about 4 a day out of the 8 total he can have.

When he was sent to his doctors for the injections we were not told that the doctor has been put it charge of ordering the PSA tests and he had gone 2 months plus without having one.

I feel very worried at the moment knowing his PSA is so high and they cannot do anything until the prostap is out of his system, been awake all night just thinking of it.

The oncology nurse said that it may be due to an infection from the catheter, his urine has been very dark and smelly recently and we gave a sample to Urology last week but have heard nothing yet and the Oncology nurse didn't seem to mention any results from it.

Before they changed him to Prostap we did ask if he could stay on degarelix because why change something that is doing the job? But they insisted prostap is just as good and three monthly courses will minimise him having to keep coming out every month.

With the degarelix his appetite picked up and he had an interest in food and gained a few kilos but since of recent on prostap he has gone downhill and lost his appetite, the oncology nurse has said if he gets any worse call an ambulance.

Sorry for the long message

User

Posted 20 Sep 2020 at 00:23

So he had 2 months with no hormone in his system at all and then they gave him a 3 month dose of Prostap without any bicalutimide?

If that's correct, I don't think he is castrate resistant, I think his cancer had a party while it could! Shocking care - make sure the oncologist & oncology nurse record in his notes that this is what happened.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Sep 2020 at 16:19

Sorry Lyn, I wrote that running on minimal sleep I meant that for the 2+ months he has been switched to the Prostap injection he hasn't had a PSA test. I understand Degarelix and Prostap do the same thing but in two different ways, I was wondering if for some people the Degarelix is more effective than the Prostap and vice versa.

Not sure if this is worth noting, the day I took him for his latest PSA test he had trouble with his catheter and fresh blood coming out of the top of it, the urology nurse saw him and believes he was letting it get too full and it was pulling and making it bleed, she cleansed his bladder, took a urine sample (still no results) and then I took him for a PSA test the same day.

I am going to call his GP tomorrow morning to double check he did administer the 3 month Prostap and the urology nurse to see if he has a UTI, also retry his PSA test in a weeks time.

Thanks for your response

User

Posted 20 Sep 2020 at 23:11

Originally Posted by: Online Community Member

I understand Degarelix and Prostap do the same thing but in two different ways, I was wondering if for some people the Degarelix is more effective than the Prostap and vice versa.

It is not unheard of - that's why I suggested that you might ask the nurse to contact the onco now about switching back - if you wait until the next injection is due before asking, it will be too late & he will possibly be destined to another 3 months of rising PSA. There are also some men who have oestrogen based HT instead, and even though it is now an old fashioned treatment, it works for them where the newer HTs fail.

Someone needs to explain to him how important it is to take the pain meds correctly - waiting until it hurts is too late. Having said that, co-codamol causes its own problems which is why a pain meds review would be useful.

Edited by member 20 Sep 2020 at 23:13 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 21 Sep 2020 at 00:13

Thank you Lyn, I will do both of things. Appreciate the advice

User

Posted 23 Sep 2020 at 23:44

Lyn in regards to your question about the type of PCa my grandfather has would this only be found out via biopsy?

He has had history for around 15 years of an enlarged prostate and has been on medication for it with frequent PSA tests.

Going to Urology tomorrow for them to give him a thorough check out. He does have a UTI and I only found that out by chasing the hospital for nearly 2 weeks! Very frustrating feeling like you have to chase them up to find out things such as a big jump in PSA level and also a UTI

Thanks

User

Posted 24 Sep 2020 at 19:28

After seeing the oncology nurse today as I requested, they agree he should be put back on to monthly degarelix but they aren't willing to do it because of covid so they have told us to go to his GP and see if the GP will be willing to give him the degarelix and also pay for it out of the GPs budget.

Not holding out much hope for that, if the doctor doesn't agree then they will keep him on the prostap 3 monthly even though it isn't working and refer him to the Royal Marsden for Radiotherapy to ease symptoms.. I need to let them know what the GP says and then the oncology team will discuss their approach in their group meeting next week

User

Posted 03 Oct 2020 at 22:49

UPDATE:

as of last few weeks change in taste and lose of appetite, keep requesting food that he then decides has changed since he last had it. He seems like he is fading within himself, losing energy and becoming confused.. Still waiting on oncology appointment this week, have tried him with CBD oil spray to ease pain and also taking co codamol as instructed.

Seems like he is fading as a lot of different meals he is trying are sickly or not as he remembered (he has not teeth anymore which make it an added struggle)

Hospital called on Friday evening saying he needs a blood transfusion as platelets are low and so are haemoglobin levels (maybe to do with the fact PSA levels are currently out of control until he is able to go back on degarelix when the prostap has run its course, I hope it does make a difference)

He is trying to hold out until Monday to go into hospital for the transfusion as he does not want to be kept in the whole weekend, also when diagnosed he lost a lot of weight in hospital because he could not eat the food

He has become very weak and out of breath recently maybe due to the loss of appetite and the rise in PSA but I am hoping for a miracle and that he holds out long enough for the degarelix injection at the beginning of November.

User

Posted 04 Oct 2020 at 17:10

Sometimes, the blood transfusion can have a huge impact and gives the patient a new lease of life - fingers crossed that it goes ahead and his appetite returns a bit.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Oct 2020 at 17:14

Originally Posted by: Online Community Member

Lyn in regards to your question about the type of PCa my grandfather has would this only be found out via biopsy?

Sorry Joey, I missed this. Yes, a biopsy is needed to determine exactly which type of prostate cancer it is. There are occasions where a prostate cancer behaves in such a specific way that the urologist / oncologist can hazard a guess at one of the rare types - for example, where it goes straight to the brain or the HT doesn't work at all, right from the start - but it would only be a guess.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Oct 2020 at 01:07

Thanks Lyn, I hope it helps too.

That makes a lot of sense regarding the biopsy now!

Appreciate all of your advice it was very helpful.

Sending well wishes to you and your family

User

Posted 05 Oct 2020 at 14:48

Took my grandfather in to A&E this morning, his hemoglobin levels were 78 on Friday and now today they had dropped to 67. He is going to be given two units of blood today and he is going to be admitted to hospital under the Oncology team, A&E nurse has told the Onco team that he needs more treatment because his PSA levels are now at 1400 up from 770 about 4 weeks ago.

The oncology team were saying he had to hold out until the beginning of November when the Prostap should be out of his system for further treatment but I have no idea, last week there was a mention of referring him for RT at the Royal Marsden to ease pain but I am not sure he is strong enough at the moment. Really hoping for a miracle and that switching him back to the degarelix makes a difference for him but I know that this is unlikely

User

Posted 05 Oct 2020 at 19:39

I really hope that oncology respond to the request for intervention from the A&E nurse.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Oct 2020 at 20:46

Thanks Lyn, me too!

I had been reading that during COVID that the NHS have been giving abiraterone for newly diagnosed advanced prostate cancer but I am not sure why this wasn't put forward for my grandfather, he does have cardiac history though.

I found initial paperwork from the hospital regarding his diagnosis and it says "Diagnosis Details: C61 - Malignant neoplasm of prostate" multiple sclerotic lesions in spine and bony pelvis. It says he was started on GnRH analogue (Degarelix) because it would be better than an LHRH due to cardiac comorbidities.

It is worth noting that all of these notes are typed up on a computer but on the back there are scribblings that say the following "RRP Feb '20 G9 T3b N1 M1B, Enzilutamide 29/05" I am beginning to think these notes were scribbled on my granddad's notes by accident as the Feb 20 date is unfamiliar and he has never been on Enzilutamide and he has never had a biopsy, he definitely has not hid anything from us as he is unable to go to the hospital unaided. He was started on bicalutamide to prepare for the prostap initially but then they changed the course of action to degarelix and took him off the bicalutamide straight away

User

Posted 06 Oct 2020 at 22:08

Have been trying to contact the ward my grandad is on all day today with no luck, my grandad has trouble answering his phone sometimes due to his limited vision.

Had a call saying he may be discharged today but then one hours later being told he will not be discharged as he needs another transfusion.

Hours later I managed to get hold of my grandad and he did sound like he had given up, he said the priest had been round to given him his last rights which was VERY alarming due to the fact we had not been contacted by the hospital.

I managed to get hold of the head nurse of the ward and she said that it was definitely not the case, I begged her to go and let my grandad know as he must be delusional and he sounded like he had given up because what ever he imagined he believed was real! Poor man, not sure if it is because they have him on different pain meds or what but he definitely got confused... Not being able to go into the hospital is making this all ten times more difficult, the poor man really thought he was going to pass away tonight and his family had not been told.

PSA currently 1400 as it seems his first dose of the 3 monthly prostap is not working (diagnosed at 570 and degarelix bought it down to 0.7 after first injection)

This whole journey is a rollercoaster! I send love and best wishes to everyone going through the same

User

Posted 07 Oct 2020 at 11:10

Pain meds can do that, as you say it’s a rollercoaster but with Covid adding unwanted twists.

Take care.

Ido4

User

Posted 07 Oct 2020 at 15:04

Very true indeed! He seemed more with it today when I managed to get hold of him but now he has tested positive for COVID, one thing after another.

Just read your profile Ido4 and very glad to see how well you are getting on

User

Posted 07 Oct 2020 at 19:49

Thanks, so sorry your Dad has Covid to add to everything else.

Ido4

User

Posted 07 Oct 2020 at 21:19

Is any one able to give any advice as I have done some reading online and it has worried me quite a bit, they have given my grandad three units of blood but his hemoglobin and platelets are still low, his first hormone treatment is no longer working as PSA is high.

The nurses have said he is very mobile and quite strong but the hemoglobin and platelets makes me quite alarmed, oncology team are apparently seeing him tomorrow and I know my grandad has been confused so I am quite nervous at the fact he will be talking to them alone, they were meant to see him today but the positive covid test threw that off.

User

Posted 07 Oct 2020 at 23:13

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 07 Oct 2020 at 23:39

Originally Posted by: Online Community Member

Thanks Lyn that sounds like a very good idea, my mother is his next of kin and has previously requested for Oncology and Urology to call her and usually attended appointments with him. Will have to get a hold of Onco tomorrow and push the mental capacity act. Appreciate the advice!

User

Posted 09 Oct 2020 at 10:50

Latest update after we had all been told to self isolate for two weeks because we had been in contact with my grandad and after he had been moved to a covid ward... We get a second call a day later to say his second test has come back negative!

In the meantime his oncology appointment was cancelled and the Clinical Nurse Specialist said she can't help because he is an inpatient and they only deal with outpatients, left emails and voicemails on the Oncology Clinicians phone but still no response and now discharge team are trying to discharge him but we just want him seen by Onco first, this has been communicated several times to nurses etc but nothing has happened.

User

Posted 09 Oct 2020 at 17:23

This is absolutely dreadful - is it worth complaining to PALS to see if they can get anything sorted - you would think that people would be able to communicate effectively in this day & age.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Oct 2020 at 17:47

Originally Posted by: Online Community Member

This is absolutely dreadful - is it worth complaining to PALS to see if they can get anything sorted - you would think that people would be able to communicate effectively in this day & age.

Thank you Lyn, I will have to do that after my next and last attempt on Monday.

They discharged him today and it seems they have put him back on Bicalutamide tablet, not sure why.. It also says "Thrombocytopenia ? Cause" and "Anaemia" Hb 57 on admission and Hb on discharge 93 (3 units of RBCs with good response)

Platelets 72 on admission and rapidly dropped to 44, received one bag of platelets (discharged at 67) and blood thinners discontinued will be reviewed on Tuesday after bloods at the Ambulatory Oncology Care Unit

User

Posted 10 Oct 2020 at 19:29

Your grandad's cancer is managing to feed despite the HT but because he hasn't been on HT for very long, it would be unusual for him to have become castrate resistant already. This suggests that the HT simply isn't working well enough to block all testosterone production so the bical will disguise the testosterone that is floating around to make it harder for the cancer to find.

Edited by member 10 Oct 2020 at 20:47 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Oct 2020 at 15:56

Thanks for that information Lyn, I hope that is the case. He was discharged yesterday and he was so weak, we currently have him at home and he is not drinking or eating much at all but he also isn't in pain so he hasn't been taking cocodamol.

Appreciate all of your help Lyn

User

Posted 11 Oct 2020 at 20:22

I feel let down by oncology and the hospital if I am honest, if it turns out that introducing the bical helps control his PSA since switching him back to Prostap then I feel like they left it too long, we let them know a month+ ago that he was in pain and losing appetite and they advised that they cannot do anything until the three month prostap is out of his system but since being admitted to hospital they decided they can put him back on bical!

Not to mention the fact he had a false positive covid swab and was moved to a covid ward, they said he was strong and ready to be discharged but he had not made bowel movements for 4 days so they won't discharge him until they sort that... Yesterday when we picked him up I found out he had been given 3 enemas in the morning (I picked him up at 12:30) and it had completely zapped an already weak man (they just wanted to solve the constipation to free up a bed)

When we got home he had several accidents which very much hurt the pride of a 91 year old man, this left him saying things to us like "I will be happy if I just go in the night" not to mention his back side is very painful from all of these enemas.. I am truly heartbroken that they would put an elderly man with a terminal illness through this just to free up a hospital bed.

He actually felt strong and was able to go up and downstairs before they put him through this. He sat awake all night worrying about further accidents and is now refusing food but I can only take comfort in the fact he no longer needs cocodamol or any kind of painkillers

User

Posted 12 Oct 2020 at 14:39

We got the GP out to see him today as he is very confused and out of it, the GP came and said he has just received a copy of the CT scan and it has spread all over including his lungs.

The doctor wants to admit him to hospital, he said it doesn't look good at all and he has called an ambulance. My grandad is very confused and doesn't want to go anywhere, he said he just wants to be left alone but when he was well he always said he wants to end up in a hospice. This seems like such a short journey but I hope everyone reading this stays health and positive as possible

User

Posted 12 Oct 2020 at 18:23

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Oct 2020 at 18:44

Originally Posted by: Online Community Member

Thank you for everything Lyn, I really appreciate it and wish all the best for you and your family

User

Posted 12 Oct 2020 at 19:54

I’m sorry to read this. I hope they can get him in a hospice and make him comfortable. Thinking of you all.

Ido4

User

Posted 12 Oct 2020 at 20:23

Really sorry to hear this... hope you/they can get the your grandad comfortable and free of any pain.

Its so sad you/we have to fight for basic humane treatment for our loved ones....

Hope your grandad gets the dignity and treatment he deserves.. I will be fighting for my dad.

xxx

User

Posted 12 Oct 2020 at 21:19

Originally Posted by: Online Community Member

I’m sorry to read this. I hope they can get him in a hospice and make him comfortable. Thinking of you all.

Thank you very much, I hope you are well

User

Posted 12 Oct 2020 at 21:24

Originally Posted by: Online Community Member

Really sorry to hear this... hope you/they can get the your grandad comfortable and free of any pain.

Its so sad you/we have to fight for basic humane treatment for our loved ones....

Hope your grandad gets the dignity and treatment he deserves.. I will be fighting for my dad.

xxx

Thank you, I know it is a horrible feeling having to fight for basic humane treatment.. I know covid has made things harder but we can't take any comfort in that! Keep on fighting

Sending love and strength to you, your mum, dad and rest of the family!

Take comfort in the fact there are some very kind people out there that do their most to help, are we explained to the ambulance crew the situation they were appalled and they put on the blue lights and flagged him as possible sepsis even though they knew he hasn't got it just so he would get seen quicker.

Edited by member 12 Oct 2020 at 21:30 | Reason: Not specified

User

Posted 12 Oct 2020 at 21:35

Thank you so much for your kind words.

We will keep fighting for my dad... there are certainly some amazing nurses, consultants and doctors out there. My dad has felt he has had good treatment to date and to be fair he has had all scans, blood tests etc.. sadly it may be his cancer is just too aggressive now for anything to work and it’s his time.

All we can hope for, and for your grandad too, is that they are comfortable and peaceful.

all the best for you, your family and especially your grandad

User

Posted 13 Oct 2020 at 16:46

Thank you Anne

I had to fight today to be able to see him at the hospital, they first said no but then allowed me to visit him for 30 minutes but nurses kept coming around asking who allowed me in.

My grandad was so confused about where he was, I let him know I was there and he said where have you been I have been looking for you. I feel so broken having to leave him after 30 minutes knowing he has days or a week or two left. I tried to keep strong for him but when I had to leave I got a bit choked up and he told me to take care.

Bollocks to COVID and Prostate cancer.

User

Posted 13 Oct 2020 at 17:16

Glad you got to see him but heartbreaking to have to leave him. What a situation.

Ido4

User

Posted 13 Oct 2020 at 18:01

Hi Joey

This is a really crap situation and extra stress and sadness for your grandad and you - can they get him into a local hospice do you think?
I cannot begin to imagine not being allowed in to see my dad if he was in hospital. Each time my dad has an appointment at the oncology clinic or surgery for blood tests, my mum has to fight to go in with him... he can hardly walk now so they have to let my mum in too but not happily!

While Covid19 is a serious disease so is terminal cancer - NHS need to give priority patients and their families the treatment and backup they need.

I really hope they can arrange something more suitable and comfortable for your grandad and your family sorted ASAP so you can spend as much time with him as possible.

Anne
Xx

User

Posted 20 Oct 2020 at 20:15

User

Posted 20 Oct 2020 at 20:28

Dear joey

Sorry dear Joey, sorry you have lost your beloved grandad to this disease and bless you for thinking of others.

best wishes

anne

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