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Advanced prostat cancer part 2

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User

Posted 19 Jun 2017 at 22:46

Oh Julie. I'm so so sorry. Nothing I can say is even remotely adequate. All I can do is send my love and affection and thoughts and I do so with all my heart.

Love

Eleanor

xxxx

User

Posted 19 Jun 2017 at 22:53

Julie I feel your pain and helplessness. Is there a local hospice? Or an alternative hospital? Would a phone call to Macmillan Nurses or the nurses on this site give you any help? Both of you need care and Trevor doesn't seem to be getting what he needs at this time. Sorry I haven't got any answers but send both of you lots of love.

User

Posted 20 Jun 2017 at 00:13

I wish that you had time to read the riot act and get him home where you can care for him properly but perhaps that will not be possible now - shocking that in one way he has outlived every prediction tenfold but then the end-stage has come so suddenly. Do you have people that can look after the boys so that you can spend the time you need at the hospital? You might have to be there to make sure he gets the meds at the right time and all that stuff. Is he eating anything at all and is he still drinking?

So, so sad for you. T will know that you are there, hearing your voice will soothe him and feeling your touch will give him reassurance. You have been as brave as a mountain lion for 4 years and now I am sending you extra strength; dig deep Julie and give them hell to ensure he is as comfortable as possible xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Jun 2017 at 06:35

Julie I am so sorry. Since losing Mike in February I only visit the site occasionally but feel I have to check in. In my lowest times you always made me smile with your funny stories about your wonderful Trevor. Is there any chance of moving Trevor to a Hospice? It is so hard for you to see the man you love not being treated with dignity. Please look after yourself also. You, Trevor and your boys are in my thoughts and prayers

With love Molly xxx

User

Posted 20 Jun 2017 at 07:13

Julie

All my love and best wishes to you.

Ulsterman

User

Posted 20 Jun 2017 at 07:30

Hi Julie

i am so sorry to read your latest news, if you need me to help with the dogs or giving lifts just let me know.

Hope you manage to get Trevor comfortable.

thinking of you and the boys

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 20 Jun 2017 at 07:36

Julie I just want to add my love to all the other posts. I can really relate to what you are experiencing with the hospital: My oh went intonkidney failure lrecently and had to spend 8 days in hospital. After an incidence where they were 3.5 hours late with his medication I arrived at 7 Ithe next morning and stayed there. I have him home now. We shouldn't have to fight for dignified and proper care for our loved ones at any time but especially not at this most difficult time for you and Trevor but it seems more and more often we are finding ourselves in the battlefield that the NHS has become.
Stay as strong as you can for you and your man Julie.
Yvonne

User

Posted 20 Jun 2017 at 07:46

Julie, I am so sorry to read about how badly you are both being treated, I know I don't know you but you and Trevor have all my love and thoughts right now. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 20 Jun 2017 at 09:03

My love to you both and for your boys too.

I know you won't need any encouragement to raise a stink Julie, you'll fight tooth and nail for your man, as you always have.

Is it possible to get on to PALS and demand that somebody sorts this out, at least to give Trevor the dignity he so deserves.

I'm routing for Trevor, I know he is really poorly, I understand that, but I hope so much that he can rally enough for you to have a conversation with him. He will know you are there though so like Lyn says, he'll hear you.

Love and support to you both

******

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

User

Posted 20 Jun 2017 at 09:46

Look after yourself in all this Julie, I know that can be difficult. But if Trevor rallied you will want to be there for me.

User

Posted 20 Jun 2017 at 15:52

Julie

my SS

I haven't been on the forum in ages almost everyone I knew on here has either gone or I keep in touch on a more personal level. Like Devonmaid I got a little person on my shoulderr telling me I should look in. Well that's if it is fair to call Si superman a little person!

When we last chatted I told you that I had become tired of being the person that people only seemed to associate with the partners about to lose their loved ones, as if my loss somehow made me a tower of strength or gave me a divine power to make things seem better. It really never did and does not now.

I am so sad to read your latest posts and that Trevor is quite probably facing his final battle wih this s*** disease. The war against PCa is not over for you Julie and it never will be as long as you have a breath in your body. You will fight for Trevor to have the dignified death every person should be given and you will silently pray for a miracle of some sort to happen. All those blue light incidents wih the amazing reoveries from ambulance rides to ride on mower resurgences ...please, you will ask, let there be more of those?

Trevor's battle is also yours and after 4 years of rollercoaster riding you are exhausted.So please let others help and when that proverbial fat lady starts wobbling on her vocals, you yell at her to sing as loud and strong as she can. Trevor deserves the biggest finale possible after the brave fight he has fought.

I can offer you very little comfort or wise words. Moving him now may not be an option so fighting for the best care and just surrounding him with the love and knowledge that you are there with him and for him as always is the most you can do.

I do hope his family can come and give you some support and help and take the time to help with the boys too.

I will be thinking of you,and wishing that when the end does come it calls him gently as it did for Mick just 3 years ago ... swing low sweet chariot

xxxx

Edited by member 20 Jun 2017 at 15:55 | Reason: Not specified

User

Posted 20 Jun 2017 at 17:05

Dear Julie,
I am saddened to read your recent posts , I feel a bit awkward writing this as it's to someone I don't know, yet have read their thoughts and experiences . My thoughts are with you and your family. I have read your posting laughed, cried and reflected on them, your are one wonderful lady, and a dear wife. This is a cruel thankless disease yet somehow you have squeezed laughter memories and life from every corner for Trevor and you and your family.

Leila x

Edited by member 20 Jun 2017 at 20:26 | Reason: Not specified

User

Posted 20 Jun 2017 at 19:40

Sending you, Trevor and all your family love Julie xx

User

Posted 20 Jun 2017 at 21:43

My thoughts and prayers are with you and all your family, stay strong

The only time you should look back is to see how far you have come

User

Posted 20 Jun 2017 at 21:52

Julie

Thinking of you all, big hugs.

Thanks Chris

User

Posted 21 Jun 2017 at 10:48

Julie, I am another who doesn't use the site very often now but I have continued to follow your posts as you gave me strength and laughter through our worst times.

I am so very sorry to hear your news and so angry for you both about the lack of care Trevor has been receiving. To not notice that he hasn't peed for so long is unforgivable and he hasn't received the basic needs of washing, eating, drinking etc. I agree with Johsan that you need to speak to PALS asap. Is there no possibility of a hospice bed or support for Trevor to return home?

You have been so strong and I know you will continue to fight for Trevor. Just do try to take care of yourself and your boys. You know we are all here rooting for you. I do hope you have people there to support you too.

Big hugs

Rosy xx

User

Posted 21 Jun 2017 at 10:59

So sad for you, Julie. You have been such a tower of strength, not only to Trevor but to so many of us on this forum. You both deserve better than this. It is a complete contrast to the loving, sensitive care that my Tony received in our local hospice. I know Trevor couldn't ask for a better advocate and supporter, and I hope you manage to get him the care he needs. And take care of yourself too.

User

Posted 21 Jun 2017 at 11:29

Julie

I am so sad to hear of Trevor's condition, but also angry that at this point in the journey you are not receiving the care we should all expect, but I know you will fight tooth and nail for your man.

Thinking of you all

Roy

User

Posted 21 Jun 2017 at 20:37

Julie, how are things? Worried about you x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 21 Jun 2017 at 23:37

Oh Guys thank you so much for your messages. Even my SS has popped up just when I needed her most.

Firstly I want to say a huge Thank you to a certain person who has offered to help with taxi fares to the hospital firstly it made me cry and secondly it restored my faith in human beings.

So were are we well.

Trevor

The Man

The Myth

The legend

Is still in the building but only just he is hanging in there by the skin of his teeth , this has been such a Catalogue of NEGLECT it is hard to know where to start.

The catheter was fitted via the normal route so we didn't need the op that was a huge sigh of relief.

I managed to speak to Claire our wonderful oncology nurse who was baffled by Trevor's prognosis as far as she thought he had been admitted for break through pain the Abbi was temporarily suspended due to fluid on his lungs and was to be reintroduced on Tue /Wed this week when he would be probably be sent home.

I was so confused because this didn't tally with what I had been told and how unwell Trevor seemed.

Arrangements for today was both Claire and the Palliative care team would meet me on the ward. I arrived to find Trevor slumped in a chair totally zombie like unable to talk / and still with the lunch tray sitting on his bedside table food untouched . This has been the case every time I have visited .

The next thing I know Claire appears like a guardian Angel she felt his hands and feet and said Julie he has Sepsis.

She flew into action she got him straight into bed with an oxygen mask on , IV antibiotics / informed the ward she wanted obs done every 15 mins

He has been moved to a single room and his vital signs have slightly improved. They are now saying they are cautiously optimistic, he has been placed on an Amber pathway. Basically if no improvement in 48 hrs then his treatment will be withdrawn.

So I am publically naming and shaming Peterborough Hospital for the NEGLECT of Trevor .

If he dies of this it won't be the cancer / his heart that ends his life but the terrible neglect he he has had.

I told them on Sat when his face erupted and burst he needed antibiotics if they had administered them then he would not know be having Sepsis and the huge struggle that he is facing.

The infection and not the cancer has made him unwell because of this he has been unable to eat or drink that I n turn has made him dehydrated and needing a catheter plus IIV fluids.

The infection was detected on Mon but only when Claire saw him today where they instructed to act on it even though I told them on Sat it was necessary .

I also told them on Sat that he wasn't eating or drinking .

The next 24 hrs are crucial . I can't praise Trevor's oncology team highly enough they have helped him have the 4 years that he has had , THE WiZ and Claire have been outstanding .

I will be taking this further and I will not rest until I get heard . This terrible treatment is not just happening to Trevor but all over the Country people are being let down in there hour of need

At the moment I need to concentrate on Trevor he is my priority, I am so sad and upset that my wonderful man who has fought so hard over the years to know be given such shocking care . Sorry lack of care !

I have said I want him moved to oncology Ward ASAP.

BFN

Julie X

Edited by member 22 Jun 2017 at 00:06 | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON

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