I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

My dad terminal

Email this conversation Print this conversation
User
Posted 17 Aug 2021 at 08:47

We found out yesterday that my dad is terminal with approximately 3 months to the end of life. 

We are devastated. The struggle we have is, my dad is a very proud military man who wants to do it all himself, but he is not really talking to us other than small bits. we are worried that when the time comes and he is unable to talk to us, we get his wishes wrong. All he told us, he will arrange his funeral and he does not want anyone to know other than his daughters / husbands, grandchildren. 

My younger sister is going over to try and workout a check list with him (fingers crossed). My mum is struggling with it all. My dad is trying to be prepared so he doesn’t leave her with any worries but it’s also upsetting my mum. She isn’t getting him to process this herself. 

at the moment my head is going around and around. 

on top of the cancer, we also found out my dad has a heart condition. Before the shocking news; they planned to operate, now this is not going a head. He has to have 3 blood transfusion this weekend. He then asked the doctor to sign him out as he just wants to go home. His medication has yet not been sorted out my the GP. He has only been given paracetamol for the pain!  

As you can imagine, my head is going around in circles. I feel angry, upset at the world. Because I can’t talk about other than to my partner and sister, they are going through the same as me. This is why I am reaching out to the group. 

sorry if this doesn’t make any sense, my head isn’t with it. 

thank you for listening. 

User
Posted 17 Aug 2021 at 21:56

Hello Scottishlassie 

I am also a Scottish lassie and sadly too my dad has advanced prostate cancer and I think we are approaching the start of the end now.

for you it sounds awfully sudden….how old is your dad? When was he diagnosed? My dad is 85 and was diagnosed in 2018 but did ok until 2020 then his treatment stopped working. It seems the cancer journey can be very different for each person.

Regardless it’s an awful shock…. Have Macmillan nurses been in touch? Is there any treatment they can try? It all seems very sudden. Over the past year I have felt similar emotions…my dad is also very proud but now I feel we have no choice but to accept….keeping your dad comfortable (whatever that means to him) is most important and supporting your mum…it’s a hard road .

anne

xx

User
Posted 18 Aug 2021 at 08:16
Echo Dave's comments. I suspect he needs the blood transfusion because his bone marrow has been depleted by the cancer invading his bones. This means he is very poorly BUT because he has not had androgen deprivation therapy previously it could have a miraculous impact on the cancer.

So hopefully 3 months really is a worst case scenario and he may have many more.

Keep on top of the hospital and medical staff the NHS may be great but it is also forgetful and incompetent at time too!

User
Posted 18 Aug 2021 at 15:33

Ver6 sorry to hear this. Sending you strength.

Show Most Thanked Posts
User
Posted 17 Aug 2021 at 19:46

Scottishlassie 

Sorry to hear your news, replying to your post will push it back up to to top and I am sure someone will be able to offer some advice.

Thanks Chris

User
Posted 17 Aug 2021 at 19:58

Thank you Chris. 

User
Posted 17 Aug 2021 at 21:40

Hi Scottishlassie,

Sorry you are here. I can't offer much practical advice. Hopefully some other members here can post details particularly about hospice help. Most importantly getting help from a hospice doesn't mean he has to go to a hospice, the staff will be able to offer help in the community.

How old is your dad? How long has he known about the prostate cancer? 

Dave

User
Posted 17 Aug 2021 at 21:56

Hello Scottishlassie 

I am also a Scottish lassie and sadly too my dad has advanced prostate cancer and I think we are approaching the start of the end now.

for you it sounds awfully sudden….how old is your dad? When was he diagnosed? My dad is 85 and was diagnosed in 2018 but did ok until 2020 then his treatment stopped working. It seems the cancer journey can be very different for each person.

Regardless it’s an awful shock…. Have Macmillan nurses been in touch? Is there any treatment they can try? It all seems very sudden. Over the past year I have felt similar emotions…my dad is also very proud but now I feel we have no choice but to accept….keeping your dad comfortable (whatever that means to him) is most important and supporting your mum…it’s a hard road .

anne

xx

User
Posted 18 Aug 2021 at 06:30

Hi Dave. 

he turned 71 this July. He was only diagnosed on Saturday after having to go into hospital for blood transfusion as he had blood poisoning. He has been feeling unwell since March, but with Covid he couldn’t be seen, so he put it down to shingles. 

User
Posted 18 Aug 2021 at 06:35

Hi Anne,

he turned 71 this July. He was only diagnosed on Saturday after having to go into hospital for blood transfusion as he had blood poisoning. He has been feeling unwell since March, but with Covid he couldn’t be seen, so he put it down to shingles. He to start injections nexts week along with a tablet to prolong the end. Since coming home from hospital on Saturday, he has not seen and nurse or GP. My sister went and chanced them up yesterday. Thank you for listening x

User
Posted 18 Aug 2021 at 08:00

Hi scottishlassie, 

OK that is a lot to take in since Saturday. The people on this forum will be able to help you process the information, which at the moment is just going around your head in circles.

The first thing to say is that the words "incurable" and "terminal" sound like the same thing when you have no experience of cancer, but they are quite different.

If he is terminal then the doctors think he has a clear path to death, and it is of the order of three to six months. If he is incurable then it means the cancer will never be cured and he will always need treatment, we have people on this forum who have had incurable cancer for over ten years.

If he went into hospital on a weekend with no knowledge of cancer, then no oncologist (cancer specialist) will have been planning to see him. I do not doubt that as part of his treatment for blood poisoning a blood test will have been done and cancer discovered, but I do doubt that anyone was around in hospital on a weekend to give him all the information he needed in a way which is comprehensible to someone already ill with blood poisoning.

The most important figure to help people on this forum understands what is going on is his PSA, the smaller this number the better, if it were under 4 he would be normal, so clearly it is above 4. If it is more than 4 but under 100 he probably does have quite serious cancer. The fact he has been put on tablets straight away and injections shortly suggests his PSA was in the thousands and cancer is present without doubt. Can you find his PSA number and post it here?

I am now going to be slightly optimistic and assume he has been told he has "incurable" cancer and misinterpreted that as "terminal" cancer. If that is the case, the tablets and injections are for hormone therapy (HT) also known as androgen deprivation therapy (ADT). It can not kill the cancer, but it can make it dormant for many months, usually at least two years and sometimes for over ten years. It is effective for about 95% of men, it has side effects they are quite manageable. I was on ADT for two years it was not a big problem. 

I think your dad should be asked to be copied in on all correspondence between the hospital and GP. These letters have a lot of useful information, you can post the details on this forum and members can explain what it really means. 

Good luck, keep posting within a week or two you will have this sorted out in your own mind a lot better. 

 

Dave

User
Posted 18 Aug 2021 at 08:16
Echo Dave's comments. I suspect he needs the blood transfusion because his bone marrow has been depleted by the cancer invading his bones. This means he is very poorly BUT because he has not had androgen deprivation therapy previously it could have a miraculous impact on the cancer.

So hopefully 3 months really is a worst case scenario and he may have many more.

Keep on top of the hospital and medical staff the NHS may be great but it is also forgetful and incompetent at time too!

User
Posted 18 Aug 2021 at 08:44

Hi,

 

Thank you for your reply. 

we has been in snd out of the hospital going through tests for the past 5/6 weeks, MRI/CR/Bone scans. He had bloods taken on Friday with a call on the Saturday morning to go in for the transfusion, blood poison - secondary infection. The oncologist was also there waiting on him. After the transfusion he went for a further X-ray / CT. 

from all the tests over the past few weeks he received the news on the Saturday and he passed them to his daughters on the Sunday. 

we have had a looked at the letter which he was discharged with stage 4 Advanced prostate cancer. My sister has also spoken with the consultant for advice. He was given the options of the injection to prolong life, he was told it may or may not work due to how advanced the cancer is. He is now at home awaiting on the Marie cure nurse to come in to make him comfortable  

so the answer is Yes - Terminal 

 

User
Posted 18 Aug 2021 at 09:09

Hello

hopefully the injections will help give him more time… what tablets will he get?

My dad was diagnosed 2018 and was on injections for nearly 2 years - he did very well on them but they stopped working. The cancer then spread and he was giving tablets which never worked….he was classed as 6 months or less terminal last August but is still here…. He had a small amount of radiotherapy in December which really helped him for 6 months so it maybe there will be options for your dad.

Is the cancer in his bones? If yes I would imagine he has pain and will need more than paracetamol…you may have to chase the doctors…we have had to all the way…

I would try and speak with his oncologist direct to get more details. 

 

User
Posted 18 Aug 2021 at 09:27

OK that is good information and pretty clear. Yes the ADT has a good chance of making the cancer dormant, eventually one of the cells mutates and becomes ADT resistant and the cancer starts from that cell, but this time all the cells generated from that one cell are ADT resistant so that treatment fails. 

With so many cancer cells in his body, it may not be long before one of them develops resistance. So yes the ADT may not be effective for long. Whilst it is effective it should relieve the symptoms and give him time to put his affairs in order in some comfort. 

I'm glad he has the Marie curie nurses available, sadly it is a case of managing things till the end. We have on this forum family members of people who passed away, who sometimes post and may be able to help with advice on pain medication etc. naturally it is not easy for them to always post on such an emotional topic. 

Feel free to keep posting, even if we can't do much to help, at least we can lend an ear and help you deal with your own feelings. 

 

Dave

User
Posted 18 Aug 2021 at 09:34

Thank you Dave. He is working on his affairs as we speak. Almost everything is in order. He wants to make sure my mum and us don’t have to worry. All he wants is to have 1 more pub day his friends and 1 lunch date with my daughter his granddaughter before he goes. We are hoping the injection help.  

thank you again. 

User
Posted 18 Aug 2021 at 15:33

Ver6 sorry to hear this. Sending you strength.

User
Posted 19 Aug 2021 at 07:56

Hi,

amazing news and well done to your dad. 

sadly it is everywhere in my dad including the bones. He has been told it’s to far gone for any therapy. He been offered the  injections & a tablet for the hormones to see if it will give him a better quality of life and to try a pro long the end but no guarantee it will work. 

right now, the most important tasks is managing his pain. Once we get this managed he maybe able to go for a small game of golf, taken his granddaughter for lunch and a pint with the boys. His bucket list is small but important to him. 

I wish your dad the very best and long May his treatment work. X 

User
Posted 19 Aug 2021 at 18:43

I am so sorry that your Dad has had such devastating news. My husband battled with the disease for nearly ten years. His last option  was chemo and with hindsight I wish he had not had to go through it. The chemo itself was ok but the side effects were awful..  He was given 4 months after the cancer accelerated and psa reached 3000. We took him back to see the sea at his home town three weeks before he died . He planned his own funeral service and saw his children on his last evening. Sadly this is an unpredictable disease and affects each man in a unique way. I hope he can be pain free and peaceful when his time comes. It is a very difficult time for you all. Xx

 

 

 

 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK