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So fed up of being told to stay positive

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User
Posted 03 Aug 2024 at 23:23

My partner and I had only been together a few weeks when he was diagnosed with advanced prostate cancer in February 2020. Despite everything we are very much in love, very close and have a fantastic relationship. We got engaged two year ago and tried to just get on with living the best life we could.


 After Aberaterone failed he began six cycles of dexamethasone but unfortunately the chemo was having no effect on the cancer and due to that and the severe side effects he was experiencing his oncologist has stopped the chemo. 

We have until Sept to decide if he wants to try Radium 223. If not then that’s it there’s nothing else. 

The last three weeks have been very hard, for the first time it feels very real. For four years there’s always been another drug to try when the psa starts to rise etc, but now there is nothing and I feel I am already grieving for the loss of what is to come. 

Im so fed up of people telling us to stay positive, keep your chin up, they are finding new things every day. 

I have to stop myself from shouting out that I can’t feel positive right now because I’m too angry, scared and more than anything so very sad. I’m trying to keep strong for him because I know that he is scared and angry and desperate for a miracle. It’s just so very hard right now. 

Some days you just have to create your own sunshine...... 

User
Posted 03 Aug 2024 at 23:23

My partner and I had only been together a few weeks when he was diagnosed with advanced prostate cancer in February 2020. Despite everything we are very much in love, very close and have a fantastic relationship. We got engaged two year ago and tried to just get on with living the best life we could.


 After Aberaterone failed he began six cycles of dexamethasone but unfortunately the chemo was having no effect on the cancer and due to that and the severe side effects he was experiencing his oncologist has stopped the chemo. 

We have until Sept to decide if he wants to try Radium 223. If not then that’s it there’s nothing else. 

The last three weeks have been very hard, for the first time it feels very real. For four years there’s always been another drug to try when the psa starts to rise etc, but now there is nothing and I feel I am already grieving for the loss of what is to come. 

Im so fed up of people telling us to stay positive, keep your chin up, they are finding new things every day. 

I have to stop myself from shouting out that I can’t feel positive right now because I’m too angry, scared and more than anything so very sad. I’m trying to keep strong for him because I know that he is scared and angry and desperate for a miracle. It’s just so very hard right now. 

Some days you just have to create your own sunshine...... 

User
Posted 04 Aug 2024 at 16:07

You are definitely not alone. The classic phrase I hear is 'its the good cancer to have'. I am quite good at the retort these days.

Others have already mentioned the support groups. Honestly I have PCa nurses on here invaluable for the advice they have given.

User
Posted 04 Aug 2024 at 06:33

Originally Posted by: Online Community Member
Im so fed up of people telling us to stay positive, keep your chin up, they are finding new things every day.

Unless you've got a life threatening illness, or you're the partner of someone who does, it just doesn't seem to be possible to relate to something so profoundly serious and potentially able to cause death.

I'm in Australia so I'm not familiar with the system over there. I'd suggest that both you and your husband should be able to find support groups of people who can relate to you in knowing and understanding what cancer means. The PCUK specialist nurses [see home page] would be a good starting point. Decho, who posts here quite frequently, speaks highly of a men's group he joined. MY Maggies Centre perhaps?

You're in a hell of a position and the fear, pain and anger are going to be slightly different for both of you. There's a number of women who post here as partners of prostate cancer sufferers and maybe they might be helpful contacts.

I wish you both well in finding the strength and some peace of mind to deal with this challenge.

Jules

Edited by member 04 Aug 2024 at 06:57  | Reason: Not specified

User
Posted 04 Aug 2024 at 08:51

Oh Annie, I feel for you, those of us with this horrible disease know and understand what you’re both going through. And staying positive sometimes IS very difficult.

As Jules says I am always banging on about Maggies, but it  sounds to me as though you BOTH really need some support and might benefit from trying it. Find out if there is a centre near you and both of you just walk in ask to have a chat, no appointment is needed. there will probably be many groups within the centre you Can join, or you can just pop in anytime for a chat and one-to-one support.

For me it has been my saviour helping me get through this, and I still go along whenever I can to help others just starting on their journey. I’ve seen so many men who join the groups and really struggling, but always go away from the meetings feeling better.

Good luck.

Derek

User
Posted 04 Aug 2024 at 11:17

Hi Derek,

We have used Maggies previously when he was under treatment at The Christie and we  have been recently and have the timetable for both the mens support group and relatives group. We are back at the Christie on Tuesday to see the Trials Consultant. But from the leaflet they sent with appointment we don’t think they will be offering anything that could help, but you never know😊

 

Some days you just have to create your own sunshine...... 

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User
Posted 04 Aug 2024 at 06:33

Originally Posted by: Online Community Member
Im so fed up of people telling us to stay positive, keep your chin up, they are finding new things every day.

Unless you've got a life threatening illness, or you're the partner of someone who does, it just doesn't seem to be possible to relate to something so profoundly serious and potentially able to cause death.

I'm in Australia so I'm not familiar with the system over there. I'd suggest that both you and your husband should be able to find support groups of people who can relate to you in knowing and understanding what cancer means. The PCUK specialist nurses [see home page] would be a good starting point. Decho, who posts here quite frequently, speaks highly of a men's group he joined. MY Maggies Centre perhaps?

You're in a hell of a position and the fear, pain and anger are going to be slightly different for both of you. There's a number of women who post here as partners of prostate cancer sufferers and maybe they might be helpful contacts.

I wish you both well in finding the strength and some peace of mind to deal with this challenge.

Jules

Edited by member 04 Aug 2024 at 06:57  | Reason: Not specified

User
Posted 04 Aug 2024 at 08:28

Originally Posted by: Online Community Member

Im so fed up of people telling us to stay positive, keep your chin up, they are finding new things every day. 

Annie,  some people are dreadful at expressing their concern and sympathy.  They say things that they think will help but  do the exact opposite.

User
Posted 04 Aug 2024 at 08:51

Oh Annie, I feel for you, those of us with this horrible disease know and understand what you’re both going through. And staying positive sometimes IS very difficult.

As Jules says I am always banging on about Maggies, but it  sounds to me as though you BOTH really need some support and might benefit from trying it. Find out if there is a centre near you and both of you just walk in ask to have a chat, no appointment is needed. there will probably be many groups within the centre you Can join, or you can just pop in anytime for a chat and one-to-one support.

For me it has been my saviour helping me get through this, and I still go along whenever I can to help others just starting on their journey. I’ve seen so many men who join the groups and really struggling, but always go away from the meetings feeling better.

Good luck.

Derek

User
Posted 04 Aug 2024 at 11:17

Hi Derek,

We have used Maggies previously when he was under treatment at The Christie and we  have been recently and have the timetable for both the mens support group and relatives group. We are back at the Christie on Tuesday to see the Trials Consultant. But from the leaflet they sent with appointment we don’t think they will be offering anything that could help, but you never know😊

 

Some days you just have to create your own sunshine...... 

User
Posted 04 Aug 2024 at 16:07

You are definitely not alone. The classic phrase I hear is 'its the good cancer to have'. I am quite good at the retort these days.

Others have already mentioned the support groups. Honestly I have PCa nurses on here invaluable for the advice they have given.

 
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