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Second opinion -fast tracked home

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User
Posted 10 Jan 2020 at 00:13

My dad is being fast tracked home after presenting with two lower legs swollen and being unable to walk.  It’s not spinal cord compression. 

He has a urinary tract infection and ended up in hospital after he started to lose ability to walk.  His lower legs are still swollen with fluid and it seems I have been misinformed several times of what is actually going on. 

Initially I was told it was due to low albumin and prostate cancer progression. But now I have been informed his albumin is normal.  

I have been told his lymph glands in his legs are swollen thats the reason why he cannot walk.  But no one can confirm is it metastatic deposits in the lymph nodes.   

so he has been told he has 3-6 months to live, is being sent home - fast tracked within 48 hours and told he will not be resuscitated. 

what a shambles,  my dad feels great and his only issue is his legs, difficulty urinating fully, and he is constipated. 

Finally after 3 days in hospital , he has had a bladder scan and they fitted a catheter and this led to 2 litres of urine and his stomach swelling went down.  He has opened his bowels.   3 days of mentioning I can’t pass urine well and my stomach is swollen and big.  I am so angry. 

I had to fight for everything, and he will be seen by oedema team soon for possible stockings.  Only because I asked after doing research.   I have asked for a copy of his medical records and all scans, and will go for a second opinion privately.  It seems unless you do a lot of research and ask specific questions and be persistent you could easily be led down wrong path. 

His PSA is 171, he is feeling fine after finally having catheter fitted and suppository supplied after many days of asking.   

No one asked him if he wanted to be resuscitated.   He does not even know what it means.  

I will get that second opinion and will fight his corner.  So totally shocked how he has been treated. 

Let them continue their 48 hour fast track home.  Seems he has been written off. 

I’m not allowing that to happen to him and will go through his scans and records myself and research. 

User
Posted 10 Jan 2020 at 06:33

You may possibly waste time and effort that could be spent on being with him and making memories. He has done well to have 61/2 years with metastatic cancer.

Does he want stockings? Have you asked him? They are hot and uncomfortable and will not cure the oedema.

Have you discussed what he would like for the end stages? Now is the time to talk about whether he would prefer to die at home or in a hospice, if given the choice? Home care will need to be planned now so that referrals to the local authority social care team, district nursing, occupational therapy / physiotherapy, etc are all made and a package put in place ready for when it is needed. If hospice care is preferred, he needs to be referred by the GP or hospital. Any equipment to help him stay mobile and comfortable in the coming weeks or months needs to be ordered or possibly purchased by the family.

There may be benefits he can claim to help with these additional costs but claim forms needed to be completed by his nurse, GP or oncologist and then submitted for fast track. You will need to speak to his travel insurer about whether they are still willing to cover him for the imminent holiday.  

Edited by member 10 Jan 2020 at 08:19  | Reason: Additional info added

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

User
Posted 10 Jan 2020 at 23:14
That is the way that advanced prostate cancer generally proceeds. You can go for many years with no symptoms at all (I believe your dad has had over six years, hasn’t he?) but when the end comes it all happens in a matter of weeks. The important thing is to make the most of your remaining time together, and to find out your dad’s wishes for when the end does come.

Chris

User
Posted 10 Jan 2020 at 23:19
The palliative care team (if he gets a referral in time) may help dad to talk about those things and will also be a good source of support to you and the rest of the family in talking about arrangements that are needed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jan 2020 at 23:49

Originally Posted by: Online Community Member

Lots of tears today and after speaking to the oncologist more I finally understand and accept what is happening.

 

I'm sad to hear this. Yes asking for the second opinion and possibility of immunotherapy are good for you, as you will know you did all that you could. But as others have said you probably can't fight this. 

Originally Posted by: Online Community Member

I would do anything to see him walk and laugh like he used to even if it’s for 3 months.   

You may or may not get lucky, but it sounds like you already have memories to cherish, maybe you will have to go forward with your own life soon, and take those memories with you. 

All the best

Dave

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User
Posted 10 Jan 2020 at 00:41
Looking at the information in your profile, all the treatment options seem to have been exhausted. It's not a case of being "written off", but accepting that no further treatment is available. Have you discussed hospice care for when the end does come?

Best wishes,

Chris

User
Posted 10 Jan 2020 at 06:33

You may possibly waste time and effort that could be spent on being with him and making memories. He has done well to have 61/2 years with metastatic cancer.

Does he want stockings? Have you asked him? They are hot and uncomfortable and will not cure the oedema.

Have you discussed what he would like for the end stages? Now is the time to talk about whether he would prefer to die at home or in a hospice, if given the choice? Home care will need to be planned now so that referrals to the local authority social care team, district nursing, occupational therapy / physiotherapy, etc are all made and a package put in place ready for when it is needed. If hospice care is preferred, he needs to be referred by the GP or hospital. Any equipment to help him stay mobile and comfortable in the coming weeks or months needs to be ordered or possibly purchased by the family.

There may be benefits he can claim to help with these additional costs but claim forms needed to be completed by his nurse, GP or oncologist and then submitted for fast track. You will need to speak to his travel insurer about whether they are still willing to cover him for the imminent holiday.  

Edited by member 10 Jan 2020 at 08:19  | Reason: Additional info added

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

User
Posted 10 Jan 2020 at 17:30

One further thing with the stockings is that they are a struggle to put on, the reason I don't wear mine. In my case this results in swelling in the ankles but I minimise this by by wearing socks that do not have elasticated socks. But your Dad's case is more severe.  Oedema Specialists can best advise. Somebody I know who is affected finds appropriate massage helpful.

Edited by member 10 Jan 2020 at 17:30  | Reason: Not specified

Barry
User
Posted 10 Jan 2020 at 23:05

Thank you for the replies.  I have just come back from the hospital.  

Lots of tears today and after speaking to the oncologist more I finally understand and accept what is happening.   His legs are swollen because the prostate cancer has spread to his pelvis lymph nodes, and this is affecting his fluid drainage from both of his legs.  It has spread to the lungs, and all the lymph nodes in the stomach.    This explains why his stomach feels numb.  

His oncologist told him he has 4 weeks left today, may be 3 months as my dad is such a strong character and will put up a fight.  I am annoyed she told him 4 weeks, as he has now declined in mood. 

My dad is amazing and we have put up a strong fight,  used wheatgrass daily juiced at home, saw an amazing homeopath, and tried all sorts like CBD oil.  Ginger, garlic, turmeric, green tea,  etc...

I asked for a second opinion and if immunotherapy could work.   I got the second opinion booked for tomorrow.  Still worth asking even though I may have ticked of his oncologist.   But it’s my dad and I want a second opinion for him. 

I asked about immunotherapy, but was told no it won’t work.  I will try and ask again tomorrow. 

I have been informed the reason not to resuscitate is because my dads ribs could break as they have metastatic deposits and he would be in a bad place even if resuscitated with broken ribs and risk of pneumonia.

The final stages are reduced appetite, lowered blood pressure and increased heart rate.   But this could take weeks up to a month.  May be even days.  But no pain.  He will sleep lots in final days.

Its hard because within a week my dad who was going to the gym and enjoying life is unable to walk, unable to clean him self and requires assistance after bowel movement.   He has lost a lot of independence and on top of that told 4 weeks.   (It was 3-6 months earlier in the week).

He wants to live a little longer to sort out his financial affairs, we have left it a little late I think. 

 

This is hard to take and I’m still hoping for a miracle.  I don’t really want to ask him his final wishes and hopes for his children and my mum.  His dreams for us and how he wants to continue without him.   Because we are all in shock and disbelief how quick the prostate cancer has taken over.   

We did not realise it could be this quick. 

I would do anything to see him walk and laugh like he used to even if it’s for 3 months.   Take that holiday he has booked and take more photos of us laughing together!  

Another sleepless night for me, dreading a phone call from that hospital. I even told them I am taking him home today but they stopped me as no care in place yet. 

 

 

 

 

 

 

 

 

Edited by member 10 Jan 2020 at 23:11  | Reason: Not specified

User
Posted 10 Jan 2020 at 23:14
That is the way that advanced prostate cancer generally proceeds. You can go for many years with no symptoms at all (I believe your dad has had over six years, hasn’t he?) but when the end comes it all happens in a matter of weeks. The important thing is to make the most of your remaining time together, and to find out your dad’s wishes for when the end does come.

Chris

User
Posted 10 Jan 2020 at 23:19
The palliative care team (if he gets a referral in time) may help dad to talk about those things and will also be a good source of support to you and the rest of the family in talking about arrangements that are needed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jan 2020 at 23:49

Originally Posted by: Online Community Member

Lots of tears today and after speaking to the oncologist more I finally understand and accept what is happening.

 

I'm sad to hear this. Yes asking for the second opinion and possibility of immunotherapy are good for you, as you will know you did all that you could. But as others have said you probably can't fight this. 

Originally Posted by: Online Community Member

I would do anything to see him walk and laugh like he used to even if it’s for 3 months.   

You may or may not get lucky, but it sounds like you already have memories to cherish, maybe you will have to go forward with your own life soon, and take those memories with you. 

All the best

Dave

 
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