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User

Posted 02 Feb 2016 at 16:44

My dad was diagnosed with advanced prostate cancer 3 years ago. Up until now I have been really good at coping with it all. I moved to university 3hrs away from home in September and being away from my family is taking its toll. At Christmas my dad got some bad results back, his PSA is up again and they are changing his treatment to the cyberknife treatment after having already done various other treatments which also all stopped working. I don't know if that means this treatment is also going to stop working quickly. I don't understand it all. I am very bad at expressing my feelings or talking to my friends and family. I hate putting myself in a vulnerable position and I have been spending a lot of time crying and feeling really alone. I really hate living with this uncertainty especially when I am so far from home. Its all of a sudden just got the better of me and I don't know what to do with myself.

Edited by member 02 Feb 2016 at 16:54 | Reason: Not specified

User

Posted 03 Feb 2016 at 12:36

Johsan,

This is a huge area and I'm glad that this has been raised.

So often it is the patient that is the main concern for family and friends. But it goes far deeper than that.

Their families are directly involved and care and assurance should be made easier for them. Children of patients ( whatever age they are) most probably never attend an appointment and rely on what their parents choose to tell them.

You are obviously very involved in your partners cancer and you have been so helpful to so many on this site, including me.

My wife ,whilst very supportive, now finds talking about cancer difficult away from the routine appointments . She doesn't block it out but wants as normal a life as possible . And I do not begrudge her that. I'm not sure how I would feel if it was the other way around.

She found it difficult that everyone was asking about me but never how was she coping. Not even her own sister.

I had to speak to my sister in law whilst going through RT and ask her to take my wife out so that she could have an opportunity to talk.

I wonder if PC UK could set up a support line for patients children - or maybe it exists already ?

Just a thought.

John

User

Posted 03 Feb 2016 at 13:15

just a thought
have you considered writing down your concerns/questions and explain to dad that you may get to emotional face to face, you could take it on your next visit
may seem a bit impersonal but hey if it works then that's good

pleased you have spoken with your mam as she will need you also, and you could ask for her thoughts on the letter

I think for you at the moment any communication with dad will be good

have a good weekend with mam and dad

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

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User

Posted 02 Feb 2016 at 17:14

hi
I am having to make some assumptions re dad, that his PCa has not spread from his prostate and this is one of the reasons they are offering cyberknife, I don't know how much you know about this procedure, if no one comes along who has had dealings with it I would suggest give the specialist nurses a call

the university will have some councillors and it may do you good to have a chat with them also, what about having a talk with a close friend, its a difficult time for you but their are people to help you along the way

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 02 Feb 2016 at 17:29

Hello EL2016 and welcome to the site.

Nidge is right in suggesting you seek help via counselling while you are away from home or from the nurse on this site but hopefully a member will be along who has investigated the cyberknife technique and may be able to help you.

Prostate cancer treatments are evolving all the time with trials being undertaken on the best way of dealing with this disease so please don't despair.

You don't say whether you're male or female, not that it makes a difference to how you feel about your dad of course but it might help us to help you if we knew whether you were a young female or a young man.

We pride ourselves on being supportive of each other and helping where we can with advice so you don't have to feel that you are alone any longer because now that you've found us we can give you a shoulder to lean on. It might not seem much when you are feeling so desperate about your dad's future but talking about it all does help, so remember, here we are.

When you get the details of the next step for him, or you need any other answers please ask

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 02 Feb 2016 at 19:08

Hello and I am sorry that you are here.

I have two daughters now aged 21 and I know that it can be difficult for them with a Dad suffering from cancer.

Yesterday there was several post under "introduction request for advice by Bill C".

Here several of us posted about how we dealt with taking to family members and even friends when breaking the news for cancer.

It may help you to read some of them.

One point I know has been shared is that is often far worse for the patient's family than it is for the patient himself/ herself for any disease.

Many people do not know what to say. But I like my family acknowledging that there is an illness in the family so we can talk about when we need to.

And not shy away from it. One of my daughters finds it extremely hard to even mention the word cancer , but is quite happy to see me struggling the never ending hot flushes I have from the hormone therapy. And laughing with me rather than at me.

But she struggles too. She is at university and we saw her this last weekend. I checked with her best friend ( house mate ) that she was ok. I'm told she's sometimes sad but knows I'm being treated as well as is possible.

Use the prostate cancer telephone support line - they're wonderful.

Or is there a cancer centre locally that offer counselling / complementary therapy .

Ask student support services - they will have come across this before.

But the best advice I can give is to talk to your father. Cancer can be a lonely place and he may really need your support. And he'll be happier knowing that you have support. I love it when my girls call for a chat. And are not afraid to mention the C word.

My very best wishes to you.

John

User

Posted 02 Feb 2016 at 19:30

Hi thank you for all your lovely comments. I am a 19 year old girl. My dads cancer had already spread to his lymphoids and other places at the time of diagnosis apparently part of the cancer has settled for now which is why they are doing the cyberknife treatment. But I know and have known from the beginning that this is definitely not a cancer that can be cured they are simply juggling with options to keep it under control. I will definitely try some of these different people to talk to. Perhaps I would find it easier to talk to a stranger than someone I know because I do find that really difficult. I really do not feel able to talk to my dad about it and i don't know why, i find everything out about the treatment etc through my mum.

User

Posted 02 Feb 2016 at 19:40

EL there are a number of men on here who have cancer with spread and have had it like that for some years.

Their consultants change their treatments periodically to give them the best chance possible and a number of them are still here many years after they would have been had it been just a few years ago. Cancers that can't be cured can be lived with for a very long time.

Treatments, are changing all the time. Even the old ones are being given a new lease of life (chemo) because they have found that changing the starting point of it is better suited to some cancers so there is always hope.

Please try not to worry about your dad. He is in good hands if they are talking cyberknife because they haven't written him off have they. They are looking for a way to help him.

Give the nurses on here a ring (0800 074 8383). They may well be able to advise you on where to get counselling. You can also email them if you would prefer that.

Look for the Help / Get Support heading at the top of the page and go from there

Edited by member 02 Feb 2016 at 19:42 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 02 Feb 2016 at 20:16

Hi EL, sorry that you find yourself in the position that you are and glad that you have turned to this site (the best) for help and support, it is what this forum is all about.

I have no experience or knowledge of cyberknife treatment so cannot help on that one but what I do have is a daughter that I have been able to discuss my condition with and she has given me tons of help and support whenever I have needed it. Why not mention to your dad that you have been on the PCUK site and read about what is involved generally with PC sufferers and also say that you have sought help and advice on the forum because you want to help him, he may be in a similar situation of not knowing what to say or how to bring you into this illness of his. He may be waiting for you to make the first move, you may have to be proactive for a change and it could be for the better. It still does not change things for your dad medically but you could end up with something that works for you both.

Just like everyone else I think a chat with the specialist nurse on this site would do no harm at all.

Best wishes, Chris/woody

Life seems different upside down, take another viewpoint

User

Posted 02 Feb 2016 at 20:36

Hello el2016 sorry you are feeling so alone, there are a lot of people here who will help you through this difficult time. As suggested please seek support from the university counselling service you are right sometimes it easier confiding in a stranger with no connection they can help you understand and see a way forward. I have a son studying a levels when there was an indication his dad had pc I went and spoke to his heads of sixth form they have been supportive and as they said to me if they don't know they can't help. I hope you will get help for you. Jayne x

User

Posted 03 Feb 2016 at 10:31

Thank you so much everyone, I feel so much better today and you have really helped push me to speak to someone, I spoke to a friend yesterday and also spoke to my mum today. I am going home this weekend and I will try and build up the courage to speak to my Dad about it then. I'm so glad I have joined this it really is nice to hear from people who are going through the same awful experience. xxx

User

Posted 03 Feb 2016 at 12:00

I am so pleased that you are feeling better. It's good to talk and it must have taken courage to contact us here on this site.

And you're away from home too, I guess in your first year at university. That's challenging in itself.
I'm pleased that you've spoke to your Mum too.
It will help her as she will need support too.
When you go home try to talk to your Dad if you are able to. I'm sure that it won't be as difficult as all that and once he knows that you are able to talk about it , then he'll feel happier knowing that you mother has support from you as well. I know that I'm glad my own children can support their mother as well as me.

As you'll see from all the messages sent to you , having cancer can be bearable for many and indeed treatable.
Many survive and/or are able to live decent lives for years .

My local cancer centre is open to all relatives of cancer patients. They offer counselling and complementary therapies too.
You may wish to explore this as a option locally to you or there again you may not.
Telling your friends is really positive . It's good that they should know what you are going through and can help you.
Your experiences may also help them in the future .
My own daughters will talk about my cancer but now it's just become part of your way of life but I'm really glad that they can turn to their friends.

I think that you are doing really well. And I hope that all goes well for you and your family .

Keep posted if you wish to.

John

User

Posted 03 Feb 2016 at 12:05

Maybe your mum and dad would benefit from looking at the site.

We have a number of wives and partners on so can give a good perspective to your mum if/when she is feeling down.

Even those men who wouldn't normally dream of spouting their personal feelings or asking for advice on personal issues find that the anonymity helps.

Just a thought

We can't control the winds - but we can adjust our sails

User

Posted 03 Feb 2016 at 12:36

Johsan,

This is a huge area and I'm glad that this has been raised.

So often it is the patient that is the main concern for family and friends. But it goes far deeper than that.

You are obviously very involved in your partners cancer and you have been so helpful to so many on this site, including me.

She found it difficult that everyone was asking about me but never how was she coping. Not even her own sister.

I had to speak to my sister in law whilst going through RT and ask her to take my wife out so that she could have an opportunity to talk.

I wonder if PC UK could set up a support line for patients children - or maybe it exists already ?

Just a thought.

John

User

Posted 03 Feb 2016 at 13:15

pleased you have spoken with your mam as she will need you also, and you could ask for her thoughts on the letter

I think for you at the moment any communication with dad will be good

have a good weekend with mam and dad

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 03 Feb 2016 at 18:43

Well done EL for making the mental decision to chat with your dad and good that you have started things with your mum. Perhaps you could start a conversation with your dad with "mum has been telling me about your treatment ..........." And take it from there.

Some people tell everyone and others keep it to themselves, it is how we all deal with it differently.

I agree with you John about families, wives and children being in need of some sort of advice line, even if they can call a specialist nurse on here, they are all involved and trying to cope and are affected by PCa. Maybe on diagnosis leaflets can be given to cover this side of how to cope/live with a parent, partner or relative that is the patient.

Best wishes to you EL and good luck with the forth coming chats with your dad.

Chris/Woody

Life seems different upside down, take another viewpoint

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