Dad's excruciating pain

User

Posted 22 Mar 2023 at 15:52

Hi everyone, this is my first post here and I'm new to the group (F, 27).

Last year (June) my Dad (67) was diagnosed suddenly with advanced prostate cancer, following an onset of pain in his hip and pelvis. Upon multiple scans and tests, it was found to have spread to the bones and lymph nodes. He was given what I now know to be the standard diagnosis of around 2-5 years.

He continued with hormone therapy and radiotherapy, but by November he was told treatment was no longer working. Then December came around and the consultant looked at his disease progression and said the prognosis was now due to be 3-6 months.

Up until two weeks ago, despite a decrease in mobility and gradual increase in pain, my Dad was still managing to enjoy the daily habits of life. However, the sudden onset of a few days of excruciating pain in the night led my Dad into our nearby hospice for "pain management" - basically to try and get on top of the pain he is feeling. It has been the most horrific thing to witness.

However, the problem is that he's been in the hospice for 2 weeks now (we thought it would be a few days), and they have been unable to get on top of the pain. Nothing seems to be working, and there is no light at the end of the tunnel. We have no idea now when he'll be able to come back out again, and it is getting pretty desperate for my Dad, who is a very active, sociable and independent person but one that has no idea what is going to happen to him.

Does anyone have experience with this stage of advanced metastatic prostate cancer? It is so difficult because while the focus is on the pain, we have no idea where the disease itself is actually at. He doesn't appear to have started the "dying" process at all, yet the pain is just excruciating. I don't feel misled - just confused, as the hospice said he would be going in until the pain is under control and then he could go back to a normal life, but now I'm worrying that he won't come out again or ever be the same. It is so hard.

Any advice or support would be appreciated. X

Edited by member 23 Mar 2023 at 17:27 | Reason: Not specified

User

Posted 22 Mar 2023 at 17:20

Really sorry you find yourself here. I have no direct experience of this situation, sadly we have many members who have died, quite often it is the wives and daughters who are posting to get answers. In the two years I have been on this forum I have not heard of anyone for whom they could not get the pain under control.

There are a number of people who are resistant to morphine, but there are plenty of other drugs to try.

Hopefully one of the more experienced members will be more helpful than I can be.

Dave

User

Posted 22 Mar 2023 at 17:53

Sadly, men do not actually die of prostate cancer; they either die of organ failure (e.g. due to the mets or lymphodema), dehydration (they become too ill to eat or drink), infection (e.g. pneumonia) or as a result of the large amounts of pain relief. Some men slip away gently but for many it is a complete loss of mobility followed by a very painful, drawn out death. The problem is getting the balance right - enough morphine to kill the pain without putting the person into a state of constant unconsciousness. The hospice is the best place for finding this difficult balance.

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

User

Posted 23 Mar 2023 at 14:52

Thanks both for your replies. Although it is difficult to hear, it is also helpful to know what to expect.

Unfortunately due to where the cancer is and how it has spread, Dad is experiencing extreme amounts of bone and neuropathic pain from his tumours pressing against the nerves, which is notoriously difficult to manage. However, the hospice have said it is unusual for them to have this much difficulty.

He is still able to get up and about with a zimmerframe, chat normally, eat normally and we even sang together in the hospice yesterday (they gave him a keyboard to play) it's just that the pain fluctuates extremely. They are trying to get the balance of pain-relief drugs right - that will help him to cope with this pain but that also does not leave him in a 24/7 heavily sedated state and that will allow him to leave the hospice and be managed from home.

So here we find ourselves in the same position each day, hoping that some new drug or combination of drugs will be our answer and that he can finally go home. Yesterday my visit was a lot lighter and full of laughter, whereas the day before he was screaming out in pain. We will just keep muddling through and making the most of each day and the moments we have together.

I will keep updating this thread, in case useful for others too.

Edited by member 23 Mar 2023 at 14:53 | Reason: Not specified

User

Posted 23 Mar 2023 at 17:21

Has anyone mentioned palliative RT? Again I have no experience of this, but some people have had RT on a tumour pressing on a nerve, to shrink that tumour and give relief. The consultant might not be aware of how much pain your dad is in so hasn't thought this a priority, the hospice may think it is not their responsibility to request it.

It is quite possible palliative RT has been looked at and rejected for some medical reason, but it is worth asking questions.

Palliative RT is not curative and may only last a limited time.

Dave

User

Posted 23 Mar 2023 at 18:13

I‘m sorry I can’t help with any advice Ally but just wanted to say how sorry I am to hear about your dads situation. I really hope they can get his pain under control and that you can make the most of spending quality time together.

Very best wishes

Elaine x

User

Posted 27 Mar 2023 at 21:25

Hi there, so very sorry that you find yourself here and that your dad is struggling so much with pain.

i lost my dad back in September and check in every now and then just to see what’s happening out there. It sounds silly but in some ways it helps me feel closer to him.

I wondered about palliative radiotherapy too. My dad had a session for pain about a year before he died and it worked incredibly well. I would say it’s definitely worth a conversation with your dad’s consultant - there may be a reason it’s not an option but, from what we were told, this sounds like the exact type of pain it was intended for.

Sending love and hugs xxx

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