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User
Posted 21 Dec 2016 at 22:12
I last posted here back in Jan/Feb when Dad was first diagnosed.

At diagnosis, PSA was 6.2. However, an MRI established that the cancer had spread to the lymph nodes and also the lungs. The bones were fine.

Dad started on the hormone injections and the PSA went down to less than 0.5. The only symptoms were needing a wee more often.

Unfortunately, a CT scan in September revealed that the cancer had spread to the bones and the cancer in the lungs had grown. Yet there was a reduction in the cancer in the prostate and lymph nodes.

The CT results were given to us early November. He started on abiraterone and steroids on the 15th December.

In the past few weeks things have taken a turn for the worse (these symptoms predate the abiraterone and steroids):
- He's developed a cough and hiccups that won't go away
- He's barely eating or drinking because swallowing is too painful
- He's in agony, especially when he sits up
- He's constipated
- He sleeps around 8 hours at night, and 3-5 hours during the day
- Worsening urological symptoms

He saw the GP today who checked him out for spinal chord compression. But she didn't listen to his chest or look down his throat. She's prescribed something for the constipation and written to the oncologist, requesting that Dad be seen sooner rather than later (his next appointment with the oncologist is scheduled for March, though he's starting to have monthly checkups with the nurse).

This is horrendous to see. I don't understand how it's all happened so suddenly. He's in so much pain and over the counter painkillers don't touch the pain.

Do symptoms usually come on so suddenly? What if the oncologist doesn't bring the appointment forward? Are these symptoms normal (he hiccups and the painful swallowing)? Is there anything we can do to help?

We don't know what to do. It's very worrying. I'm terrified that this will be the last Christmas we'll spend with him. He looks so frail and weak. Any advice, comments, kind words will be much appreciated.

Thanks,

Tegan x
User
Posted 22 Dec 2016 at 00:49

Dear Tegan


So sorry to hear about your dad and your distress - I don't have the experience to give you any medical advice I'm afraid but words of kindness and empathy you can have in bucketfuls along with virtual hugs. It's so tough to see someone you care about in pain but thank heaven your dad has you fighting his corner.


Please do contact the oncologist direct - your dad doesn't have to put up with constant pain and clearly needs to be seen by a specialist. Sometimes you have to hassle...when my partner was in severe pain I phoned the hospital every half hour until I got to speak to the consultant who called us in then and there and took the time to sort things out properly for us. I was given the confidence to do this by the speaking to the Prostate Cancer nurse on this site first. She was really helpful. And if you don't already have a Macmillan nurse supporting your dad, do ask for one.


Good luck - do let us know how you get on. Will be thinking of you.


Hugs


Eleanor


x

User
Posted 22 Dec 2016 at 09:08

Hugs aplenty from me too Tegan although I can't offer much help either.

I would however, second what Eleanor suggests. Contact the Oncologist's secretary and explain, and also mention that his GP has written and requested an earlier referral.

Emphasis his current quality of life. Does he have a specialist nurse you can contact on his behalf..

Hugs to you in abundance.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 24 Dec 2016 at 00:25
Tegan my heart goes out to you.
If dad is still in pain then my advice would be to either drive him yourself to A&E or call an ambulance. It is unacceptable that a cancer patient should suffer.
All of the normal contacts will be unavailable now because of the Christmas break.
Trust me I am not a time waster on NHS reserves Trevor has been blue lighted on several occasions with several heart attacks and a stroke . The last two times he drove himself for help with the pain from his pca .

Take dad to A&E don't let him suffer he will probably argue because he feels to weak to be bothered ( just had that with Trevor) and it is understandable the sad fact is someone Mc Milan anyone should be there to help but unless you demand it they won't be.
I know this is not what you wanted to hear and certainly not what the adveverts tell you, but you have to take control. Get him to A&E and demand help.
BFN
Juliex
NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Dec 2016 at 13:10
Thank you for all of your advice, everyone.

I did try MacMillan straight after my last post. Thankfully their lines closed at 5pm yesterday so I managed to get through. The MacMillan nurse I spoke to was fantastic and really had a wealth of knowledge (just like all of you wonderful people!).

After my conversation with her, I knew exactly what we needed to say when we had the GP appointment. We went to the docs armed with a long list of Dad's symptoms and wrote down the number for Dad's oncologist. I also wrote down everything that the MacMillan nurse had said, and the advice that was given to me by the nurse at the hospital who I spoke to on Wednesday.

The GP didn't know much about PCA, but he listened so attentively to everything we had to say. He's prescribed some cocodamol and also some medication for the hiccups (which have been painful for dad). He also made an urgent referral to the local hospice.

He phoned the oncs secretary whilst we were with him but the oncologist is now in a different country! So he's made an urgent referral to one of the other specialists at the hospital, so he should have an appointment in the next couple of weeks.

I'm definitely going to mention the 'Ensure' nutritional drinks when we next see someone. We haven't even considered anything like that but I'm sure they'd be fantastic in dad's case.

If things do get worse over the Christmas period, we'll make sure we get in touch with out of hours, or get him to a&e if need be.

Thanks again everyone. You've all been so fantastic and we wouldn't have known what to do had it not been for your advice. I'll let you know what happens, but in the meantime have a wonderful Christmas and I hope you and your loved ones have a happy and healthy 2017 xx
User
Posted 24 Dec 2016 at 18:20

pleased that you have finally received some help.  You can buy Ensure drinks at the chemist or use similar milk based drinks ,usually sold as protein drinks or for slimming.  Also soups can be blended  and pure fruit juices are also good . Enjoy your Christmas as much as you can. E. 

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User
Posted 22 Dec 2016 at 00:49

Dear Tegan


So sorry to hear about your dad and your distress - I don't have the experience to give you any medical advice I'm afraid but words of kindness and empathy you can have in bucketfuls along with virtual hugs. It's so tough to see someone you care about in pain but thank heaven your dad has you fighting his corner.


Please do contact the oncologist direct - your dad doesn't have to put up with constant pain and clearly needs to be seen by a specialist. Sometimes you have to hassle...when my partner was in severe pain I phoned the hospital every half hour until I got to speak to the consultant who called us in then and there and took the time to sort things out properly for us. I was given the confidence to do this by the speaking to the Prostate Cancer nurse on this site first. She was really helpful. And if you don't already have a Macmillan nurse supporting your dad, do ask for one.


Good luck - do let us know how you get on. Will be thinking of you.


Hugs


Eleanor


x

User
Posted 22 Dec 2016 at 09:08

Hugs aplenty from me too Tegan although I can't offer much help either.

I would however, second what Eleanor suggests. Contact the Oncologist's secretary and explain, and also mention that his GP has written and requested an earlier referral.

Emphasis his current quality of life. Does he have a specialist nurse you can contact on his behalf..

Hugs to you in abundance.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 22 Dec 2016 at 10:29
Thank you to the both of you. Your words really do mean a lot. I'll get onto that today - I've dug out so many numbers so I'll have to start working through them.

We've found that drinking through a straw helps, but it's still painful. I hate that he's in pain, especially at this time of year.

We've had 10-11 months where he was relatively symptom-free. Hearing the initial diagnosis was tough, but I really wasn't prepared for this. Dad's always been so strong. Even when he had the stroke in 2012 (it was a serious one, he had to take early retirement), I wasn't this scared.
User
Posted 22 Dec 2016 at 19:20

Hi Tegan


Any joy today in getting some practical help and support? Do hope so. I'm also responding in order to push your post back up the ladder...things might be a bit quieter on this site with Christmas chaos going on so that gives people another chance to reply.


Best wishes and more hugs


Eleanor


x

User
Posted 22 Dec 2016 at 20:03

Hi Tegan,

It seems to me that at the most urgent thing is to sort out is effective pain relief and It might prove helpful to discuss Dad's situation with one of the experienced nurses at this charity and to press hard for the earliest possible appointment with his oncologist. If this is not forthcoming very soon, and the GP cannot help, perhaps a visit to A&E might help push things along on the pain front, although one is not keen to do this at Christmas time. The progression of PCa can be erratic, difficult to predict and efforts to constrain it can work for varying lengths of time in different patients.

Barry
User
Posted 22 Dec 2016 at 23:24
Thanks Eleanor and Barry.

I called the hospital today and spoke to one of the nurses (we've not come across her before). At first she was inviting us to come in, but when she realised that Dad isn't currently having chemo (he's having the injections and abiraterone), she changed her mind and told me to contact the GP again.

She said that the GP can refer us to MacMillan and can prescribe painkillers. She also said that the GP can call the oncologist if they need to speak to him.

I'm off work tomorrow so I'll give the GP a call and get him booked in again. I just don't want it to be a wasted trip - it really tires Dad out.

Even if they do prescribe pain management, I'm very concerned about him struggling to swallow.

Hopefully we'll get some answers soon x
User
Posted 22 Dec 2016 at 23:54

That's frustrating for you (an understatement!). What did she say about the problem he's having swallowing? I agree that's very worrying...as well as following up the Macmillan route (which will be useful but will take a while to put in place) maybe you could have a chat to one of the specialist nurses on this site to see if they can suggest a way of getting your concerns addressed quickly?


My partner hadn't started chemo when I got worried so I don't really understand why in your dad's case that led to the nurse suggesting that you stick with the GP for help. I think you should keep trying to speak to the oncologist if you can - or to his/her secretary. I know it's really hard but try not to take no for an answer. Macmillan nurses will be a big help once you are linked up to them I'm sure, but that takes time and your dad clearly needs help right now.


Do hope you have a better response tomorrow. Will be thinking of you.


Hugs


Eleanor


x

User
Posted 23 Dec 2016 at 08:51
Hi Tegan,
My advise would be keep Banging that drum and don't give up until things are sorted for your dad. We have just been in a very similar situation with 2 trips to A&E which didn't really help we were promised McMillan for pain management that was over 2 weeks ago and we still haven't heard anything. Eventually our oncology nurse arranged for a home visit from our GP and he prescribed morphine (even had it home delivered) . It has worked wonders in controlling the pain and Trevor is now back up on his feet, not entirely pain free but able to manage.
There are various types of pain medication including a liquid morphine if your dad is having problems swallowing.

Ring dads GP and request an urgent home visit explain that he is to weak to get there himself and he needs help.
Don't accept a no , it makes my blood boil that we have to ask repeatedly for help .
I will be thinking of you.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Dec 2016 at 10:05
Thanks for the advice. I can't believe that this is a common problem - it seems so unfair that we have to chase like this. I dread to think what it must be like for people who don't have a support network to go through something like this.

I called the GP this morning and the receptionist said that it doesn't look as though the onc has been contacted! I asked about getting a call back from one of the docs but there aren't any call back slots until this evening. She's booked us in for a follow up late this afternoon with one of the partners at the docs. Dad's not happy about having to go there again, but he needs to get seen.

I'm going to take up your advice and give one of the nurses on this site a call in preparation for the appointment. Wish me luck x
User
Posted 23 Dec 2016 at 15:22
So, I just tried to call the nurses on this site and they're closed for Christmas. Services resume at 9am on the 28th!
User
Posted 23 Dec 2016 at 15:31

Oh no!!! Are the Macmillan nurses still working? Worth a quick check.


Either way, as Julie suggests do insist that the doctor looks at his throat and deals with the pain he is having swallowing and the pain he has sitting up. Sounds as if something more powerful than codine is required - plus a proper examination.


Might also be an idea to get a prescription for Ensure compact drinks (used to keep nutritional levels up when people are not able to eat) for your dad - the strawberry ones are quite nice straight from the fridge and might also help soothe his throat.


Keep at it...


Hugs


Eleanor


xxx

User
Posted 23 Dec 2016 at 15:33

PS 0808 808 00 00 is the Macmillan number...

User
Posted 23 Dec 2016 at 16:35

If no help elsewhere try your local hospice and explain your father  in severe pain.  I hope one of these routes works for you and please let us know what happens.  lots of hugs ,Elajai . 

User
Posted 24 Dec 2016 at 00:25
Tegan my heart goes out to you.
If dad is still in pain then my advice would be to either drive him yourself to A&E or call an ambulance. It is unacceptable that a cancer patient should suffer.
All of the normal contacts will be unavailable now because of the Christmas break.
Trust me I am not a time waster on NHS reserves Trevor has been blue lighted on several occasions with several heart attacks and a stroke . The last two times he drove himself for help with the pain from his pca .

Take dad to A&E don't let him suffer he will probably argue because he feels to weak to be bothered ( just had that with Trevor) and it is understandable the sad fact is someone Mc Milan anyone should be there to help but unless you demand it they won't be.
I know this is not what you wanted to hear and certainly not what the adveverts tell you, but you have to take control. Get him to A&E and demand help.
BFN
Juliex
NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Dec 2016 at 13:10
Thank you for all of your advice, everyone.

I did try MacMillan straight after my last post. Thankfully their lines closed at 5pm yesterday so I managed to get through. The MacMillan nurse I spoke to was fantastic and really had a wealth of knowledge (just like all of you wonderful people!).

After my conversation with her, I knew exactly what we needed to say when we had the GP appointment. We went to the docs armed with a long list of Dad's symptoms and wrote down the number for Dad's oncologist. I also wrote down everything that the MacMillan nurse had said, and the advice that was given to me by the nurse at the hospital who I spoke to on Wednesday.

The GP didn't know much about PCA, but he listened so attentively to everything we had to say. He's prescribed some cocodamol and also some medication for the hiccups (which have been painful for dad). He also made an urgent referral to the local hospice.

He phoned the oncs secretary whilst we were with him but the oncologist is now in a different country! So he's made an urgent referral to one of the other specialists at the hospital, so he should have an appointment in the next couple of weeks.

I'm definitely going to mention the 'Ensure' nutritional drinks when we next see someone. We haven't even considered anything like that but I'm sure they'd be fantastic in dad's case.

If things do get worse over the Christmas period, we'll make sure we get in touch with out of hours, or get him to a&e if need be.

Thanks again everyone. You've all been so fantastic and we wouldn't have known what to do had it not been for your advice. I'll let you know what happens, but in the meantime have a wonderful Christmas and I hope you and your loved ones have a happy and healthy 2017 xx
User
Posted 24 Dec 2016 at 18:20

pleased that you have finally received some help.  You can buy Ensure drinks at the chemist or use similar milk based drinks ,usually sold as protein drinks or for slimming.  Also soups can be blended  and pure fruit juices are also good . Enjoy your Christmas as much as you can. E. 

User
Posted 28 Dec 2016 at 11:39

Hi everyone,

Hope you all had a lovely Christmas.

Unfortunately Dad was in pain. He has been unable to swallow the painkillers. For the past week or so he had been having bright red blood when having bowel movements, GP put this down to constipation.

Yesterday he went to the toilet three times. The first time he went his poo was almost black and there was a fair bit of blood. The second two times everything was brick red.

After trying every number we had been given, I called 111. Dad didn't even want me to do that - he does not like accepting help and was really angry with me yesterday for contacting 111. They sent an ambulance (not a blue light). 2 hours later they arrived. One hour later, and after a few arguments and a lot of persuasion, Dad went with the paramedics.

A&E were amazing. The doctor who saw us had a brilliant bed side manner, but he was left with the task of telling us dad's cancer has spread again. It's now in the bowel and liver, and there has been more spread in the lymph nodes, spine and lungs. He also has a UTI.

He's been in overnight in the Acute Medical Unit and will be seeing one of the oncologists today. I'm terrified that they'll be telling us that we have weeks. I hope I'm wrong, but he really is quite poorly.

Hate that we had to leave him in AMU - whilst A&E were brilliant, the nurse tending to my Dad in AMU was horrendous - very ignorant and dismissive. Thankfully someone I knew from school was also a nurse on his ward and she was fantastic - she was the one who spotted the urine infection.

I'm just so scared right now, I can't imagine how my poor dad is feeling x

User
Posted 28 Dec 2016 at 14:26

Well you did the right thing Tegan and I'm sure dad knows that even if he was initially cross with you about it.

He's getting the help now that he needs in order to control the infection (which will be making him feel like carp) plus he gets to see an oncologist who I hope can offer more help to him..

Chin up love, you need to be strong for your dad and I know that will be very hard for you to do under the circumstances.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 29 Dec 2016 at 08:52

So sorry to hear your news Tegan. Hope that today is a bit calmer and clearer in terms of what can be done and what will be done to help your dad. As Sandra said, you certainly did do the right thing - well done for keeping at it and for getting your dad to accept help. Must have been so tough leaving him in the hospital but it's clearly where he needed to be. Thank heaven you were there batting his corner.


If you haven't already been referred to Macmillan (or their equivalent), please do ask the consultant to make an urgent request. If your dad is able to come home they can be on hand to assist and can prescribe pain killers etc. or if he needs to go to a hospice they will sort that out too.


Take care. Let us know how things go.


Hugs


Eleanor


xxx

User
Posted 18 Jan 2017 at 23:34
Hi everyone,

I'm sad to announce that after 3 weeks in hospital, Dad passed away yesterday morning. His family were around him and held his hands as he stepped into another world. Dad was one of the unlucky ones and died just under a year after being diagnosed.

Thank you to everyone for your support. Honestly, this website and these forums have been a God send and kept me sane when I was ready to lose the plot.

I wish you all well and hope that you and your loved ones are okay.

Xxx
User
Posted 19 Jan 2017 at 00:17

So very sorry to hear your sad news. Lovely though that you were all there with your dad at the end. I hope that it was a peaceful death. Hope you are able to continue to get support from members on the website - and from Macmillan.


Take care of yourself.


Love


Eleanor


x

User
Posted 19 Jan 2017 at 04:09

I'm so sorry to hear this Tegan.


David

User
Posted 19 Jan 2017 at 06:45

Hello Tegan
Offering my sincere condolences to you all and sending strength to get you through. I so hope there is a new world waiting for everyone who moves on.
Chris

User
Posted 19 Jan 2017 at 07:20
Tegan

So sorry to hear of your loss, please accept my condolences.

Thanks Chris
User
Posted 19 Jan 2017 at 08:30

Hi Tegan


Such sad news. My sincere condolences to you and your family.


Chris

User
Posted 19 Jan 2017 at 08:47

Tegan lovey, I am so sorry that this was the end result.

Be proud of yourself that you fought so hard to get dad some pain relief and try and remember your dad as the lovely man he was before the evils of PC took over.

I'm sure he would have been equally proud of you and I'm so glad that you were all able to be with him at the last to say your goodbyes.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 19 Jan 2017 at 20:47
Hi tegan,
Sending my sincerest condolences to you and your family. I hope he had a peaceful and painfree ending.
Cherish your wonderful family memories.
Lesley xx
User
Posted 19 Jan 2017 at 22:13

So sorry to hear about your dad Tegan. Sending my condolences x

User
Posted 20 Jan 2017 at 09:08
So sorry to read this Tegan .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Jan 2017 at 10:02
So sorry to hear the sad news about the loss of your father. MY wife and I send our sincere condolences to you and your family love Tom and Colette xxx
User
Posted 20 Jan 2017 at 12:24

Tegan,

Condolences on your loss. Dad's pain and anguish is now over but memories live on.

Barry
 
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