When they were first diagnosed

Thanks all I will find out prob the end of the month I hope and no I don't want any treatment I want to be with my wife so I can only hope there is another place we go to that may sound very dispondent but I'm afraid that's my feelings

Hello Mel

I think we've said before how similar our experiences  have been and that your Paul and my John also were quite alike. Reading  what you said above about Paul taking it quite calmly, 'like he always did' - you could have been talking about John. He was so accepting of his fate, he took everything they threw at him, so cheerful, so philosophical even though it was relentless. I started to grieve when we had first had the diagnosis out of the blue in November 2016. They said 2 to 5 years but we only got 2 and a half. The hormone injections and the chemo  worked quite well for the first year, but the injections had some nasty side effects - hot sweats, had to change sheets at night sometimes,  and of course it was chemical castration, with all its implications. John was put onto enzalutamide, similar to abiraterone, but it didn't work.  The second round of chemo didn't work either and they cut it short. By that time the PSA was 1500. I suppose  we were lucky in a way because although the cancer was in the lymph nodes right from the start, it was about 18 months before it went to the bones and he only had one session  of radiotherapy, but like with Paul,  it spread to the liver and then to more of the lymph nodes. That was  in January and by March John had lymphodema,  which was possibly the worst part of what had become a nightmare journey. Like you, I had up to then hoped that something would work, I knew it was incurable but it was treatable......but then we had the 'terminal diagnosis' in January and all hope was gone.  I really understand what you mean about the pain and anxiety. I feel like I have been grieving right from the start of this horrible journey. 3 months now since I lost my soulmate and best friend, and all the joy has gone out of my life.

Thanks Mel for your thoughtful and sensitive posts.

Anne x

Hi Jane,

i did the  grief when Jerry was first diagnosed last July and like the grief I have suffered since June when he died it's been unpredictable and sometimes overwhelming. This next bit is how I felt,  not a criticism of anyone just my raw emotions at the time of his diagnosis.

The guilt was worse how do you grieve for someone still with you, I felt so selfish as I should cherish the time I had  not the time I  may not have. 

So the guilt has eased but the grief is raw. X 

Hello, I relate to the starting if the grief at diagnosis, and Mel, your journey sounds very familiar. Our journey started with a prosectonmy a few years ago and all was well until Christmas last when infection then showed cancer had returned, however radiotherapy was undertaken and later scans showed it has been successful. We saw the consultant in June who gave prognosis of 10 years + and went on holiday, making plans for our future, we hadn't been together for long really and were very happy to have found each other, so very happy. Then we returned from holiday and he was unwell and an infection  and meant antibiotic so stop the cancer medication, ended up being 2 weeks, and subsequently it turns out the cancer mutated in this time and spread and grew rapidly. He went from years + to a numbr of months and we cried. He asked me to marry him and that became the focus but just a week later was rushed into hospital and we thought we wouldn't be able to, but the next day they arranged it for us in hospital. It was v special. And we cried still. The diagnosis was now weeks although on the notes they actually thought hours/days but couldn't tell us although we thought that's what they meant, we knew. We said everything we needed to say to each other. He was so brave and pragmatic, I became brave and pragmatic too to help him. Is that when I dissociated? He then was moved to a hospice and I moved in too...and he lived for an extra month but last week finally let go and passed away. I cried then again and for a couple of days after. But now I well up but then it stops. I want to cry but now I'm worried I'm coping too well and it's going to hit me bad at the funeral or something or I'll breakdown when I go back to work. I want to grieve now while I have the time and space but I think I'm numb and in shock, it was just 8 weeks it all happened.  I don't know if I'm doing ok or just in denial. 

It will come when your body is ready it's a horrible time for you and I guess it's your body's way of protecting itself just a guess 

Hi mouche ,I can totally relate to your feelings , I went through exactly the same emotions, and I found out after he died I was experiencing Anticipatory Grief. Reading about it it put so many things into perspective, even things like my 2 minor car scrapes , after none in 41, because my head was elsewhere

Please google it I think it will help

I don’t cry a lot any more,I cried all mu tears away before he died, so maybe grief won’t hit you as it does some people.You are not coping “too well”, your brain has said enough and given you some peace

I still grieve very much ,but it is in the form of a deep deep sadness and feeling “half a person”.I am trying my best to accept it

 My best wishes to you

Hi all, 

I’m glad we are talking about this, it helps us all see we are in  fact ‘normal’ in how we react & grieve.

Personally, I have been a lot like Lancashire lass1, I know I had anticipatory grief but perhaps didn’t realise quite how much at the time.

My husband was diagnosed as incurable at the start, there was no agreed treatment plan for over 2 months, even the palliative surgery he had, the MDT didn’t agree on, & was only agreed on the day he went to theatre. I spent a lot of time fighting for him- for info, for treatments, our oncologist was brilliant but Gp was terrible. Right up until he died  I was having to fight for his care & I cried every day from the day of his diagnosis, normally in the shower, or silently at night while lying in bed just listening to him breathe, trying to absorb the enormity of my big strong husband & father losing his health & then his life. 

This may sound weird, but as well as the children, what kept me going in the early days of our loss was the fact we managed to keep him at home as he wanted & I felt if I was powerless to stop it happening, then at least I would make sure he got the death experience he wanted. I hoped I would cope, I worried about the children coping with him at home especially as he had numerous seizures, & yet we did it & in the early days that helped me a lot, not something I had forseen but it was a small comfort.

I don’t cry enough now probably. I am also filled with this very deep sadness & at times an anger for what we are all missing out on, me, the kids but most of all my husband & I don’t ever think I will feel alright about that. It’s so wrong. 

What I have noticed though is that I now seem to have far more health niggles as well as low level anxiety at times because my future  just seems so uncertain, I never thought about it before, Just took it for granted. I thought we would be together until we were very old. Instead we said goodbye on our 26th wedding anniversary. 

I still feel married & yet there’s only one of us in the relationship. It’s so very very hard. 

Love to all 

Sarah xx

Hi again,

well I had a good cry tonight, looking for photos for people and found one that made me sob,  combined with some music has set me off totally! Feel better for it although so so painful. No one in the house either tonight so space to let it come too. 

Hi there sarah2nd,yes I think we were both experiencing Anticipatory Grief

So interesting to read you suffer from minor health niggles, so do I . I get theses silly rashes on my arms and body, in particular if I kneel on the floor for any reason ,cleaning etc I get a short lived rash on my knees, how strange 

My GP asked me to try Citalopram because of my heightened anxiety, it does help, but as I said before I have this deep, deep sadness and emptyness, that my friends and some relatives cannot understand. It like any extreme trauma none can understand unless they have experienced it

Sending best wishes

Something else , probably trivial to other people, I meant to mention.I hate the term widow, to me I am still married , he’s is just not here

Does anyone else feel this?