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Advanced prostat cancer part 2

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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

User

Posted 22 Jun 2017 at 00:10

Is he on a general ward? Did Claire think there was a chance of a bed coming free on oncology?

If anyone can survive this it will be Turmeric Trevor - hoping and praying for you all xxx

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

User

Posted 22 Jun 2017 at 00:15

Thank you for the update Julie

I have been so worried today and have checked back frequently for news.

He is, as you say, such a strong man, but even strong men need help.

I pray. I'm not sure that there is anyone there to answer but it do it anyway.

Keep strong my lovely.

You have a hard road ahead of you and you will be constantly in my thoughts for the next crucial 24 hours.

Please don't forget to look after yourself too because Trevor and the boys need your strength.

You know we are all here willing you both on

Best Wishes

Sandra

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

User

Posted 22 Jun 2017 at 00:55

Yes Lyn he is on a general ward but on my Insistence and with Claire's help he will be moved as soon as a bed becomes available onto Oncology. Apparently there are only 18 beds on Oncology as aposed to 30 on a general ward.

I have told all of them that he needs ro be moved ASAP and I don't want him on the ward that he is on a minute longer than he needs to be .

I have reported it to PALS but just by phone and I will be taking it further . At the moment they are very apologetic on the ward and have organised a electronic bed / an air mattress. The ward are are know trying to bend over backwards but it is all to little to late.

I am not a very assertive person but back me into a corner a watch this Lioness Roar.

Trevor is fighting and as long as he is fighting I am right there behind him .

It ain't over till the fat lady sings and from Trevor and myself she ain't singing YET.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 22 Jun 2017 at 08:07

Hi Julie

I too haven't been online yet a while and am so sorry to here of Trevors struggles.

I so empathise with you, it's a particularly hard time for you and your family.

Sending you lots of love, take care lovely lady!

Lesley xxx

User

Posted 22 Jun 2017 at 16:59

Keep fighting Julie make yourself heard. It is so hard on you and as you say after all the battles to not react to infection quickly enough is inexcusable. I do hope the anti-biotics kick in and you begin to see more hope. It sounds as if he can beat this infection then there is so,e short term hope. I do hope so, I do hope so.

It must be so hard for you and in the midst of all this make sure you care for yourself and get some rest. Hopeful for better news soon. Thinking of you and Trevor.

User

Posted 22 Jun 2017 at 17:11

Julie, I lost a mother in law last year to Sepsis which the NHS hospital seemed unable to control. I think there are various antibiotic-resistant bacteria at large in hospitals. It seems to be a matter of luck whether they pick the right antibiotics to deal with the problem which their neglect caused. Keep on their backs! This thing can be a killer, as I know. You may find a change of ward will help, but oncology will not necessarily be best versed in dealing with Sepsis. Would a change of hospital be out of the question?

Battle on as only you can and be merciless with the bureaucracy
AC

User

Posted 22 Jun 2017 at 18:26

Dear Julie,

What a nightmare, and what criminal neglect. You do need to roar like the lioness you are.

After all Trevor has gone through, this is unforgivable.

Reading your posts have had me absolutely boiling mad at the treatment you've both been given.

Be strong Julie, stronger than ever.
As you rightly say, Trevor has never stopped fighting and neither have you.

Big warm hugs from George (and Lynn ....she's even angrier than I am).

B2PCa

User

Posted 22 Jun 2017 at 22:35

Lovely Julie

I am so furious to read this update, sadly it doesn't surprise me having experienced some of the worst treatment (or lack of) in the last couple of years. I cannot believe that they didn't check him for passing water, the absolute shame of it! They have made your husband sicker than he is and if he dies of this, it is their fault. Shame on them. There is so much neglect in the NHS nowadays, simple daily procedures seem to have gone by the board. I can't tar everyone, there are some wonderful people, but this is too awful. Julie, if you need any financial support for taxis or incidentals, I'm happy to chip in, I know things aren't easy. We all adore you here, you have been an absolute joy to follow and read about your antics, even in the worst of times. If there is anything we can do, just say the word. Are you getting PIP? Please say yes, if not phone tomorrow first thing and get that sorted, I'll help in any way if you need it. I know what you need to do. Just send me a PM.

I hope that Trevor is able to fight the sepsis now that he is being treated. How the heck is that even possible in hospital today?

Massive hugs my dear friend.

Devonmaid xxxx

User

Posted 23 Jun 2017 at 08:59

Hello Julie

I don’t do much on the Forum these days but I follow a number of posts, including yours, to see how Trevor and you doing. I cannot say much to add what others have said except, as we know, NHS experiences can be excellent or rubbish. When experiences are not good sometimes people may struggle to cope with them and to find out what they can do.

I cannot say much more than has already been said except I agree with George’s comments and many of the other reactions. I do hope that the belated improvement in Trevor’s care continues but as you have said the changes are a little to late.

You may remember I put together a posting about complaints and representation a few years ago. This was carried forward when the website was changed some time back and you can see the posting under ”General discussion / prostate cancer treatment guidelines/ Complaints and representation etc – Part 2” or go directly to the link below.

http://community.prostatecanceruk.org/posts/m141866-COMPLAINTS-AND-REPRESENTATIONS-ETC---PART-2#post141866

Not everyone chooses to follow up on bad practice but there may be something in the note to help you.

Very best wishes

Alan

Edited by member 23 Jun 2017 at 12:13 | Reason: Not specified

User

Posted 23 Jun 2017 at 20:21

Just a really quick update Trevor is now on the oncology ward and the difference in the level of care is like night and Day.

His bloods show that he is responding to the Antibiotics and his Liver scan showed nothing untoward , his kidney function is responding to the IV fluids.

My Man is fighting back he still isn't eating but I did manage to get him to have a mini triffle .

He is still confused and hallucinating when I arrived he thought we were in Beirut apparently there has been gunfire and explosions all night and he was worried that we wouldn't get a flight out . I have worked in care homes for years and have experience with Alzheimer's patients and one thing I learnt was go with it and don't try and bring them back to reality but join them in there world. So I told him that I had booked us a first class seat on the first plane out of there .

He was really happy with that but then the pirates and the long boat arrived and he wanted me to cut someone's throat I told him I only had a hospital plastic fork but I would stab them in the eye 😱

So we are very much still in Shark Territory but we have a huge sprinkle of HOPE and I feel so much more confident with his level of care . He is Shamazing and I don't know how or why he has so much fight in him but he does and as long as he does I will stand shoulder to shoulder with him wether we are battling bombs and gunfire in Beirut or Pirates in a long boat. He is fighting and I am right by his side.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Jun 2017 at 21:22

Quote: "He is Shamazing and I don't know how or why he has so much fight in him but he does and as long as he does I will stand shoulder to shoulder him wether we are battling bombs and gunfire in Beirut or Pirates in a long boat. He is fighting and I am right by his side. "

Of course you are and you are also the reason he has so much fight in him.

Thank you for the update. Fingers crossed it continues.

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

User

Posted 23 Jun 2017 at 21:33

I've checked in a few times today to see if you had any update for us and I'm so pleased to hear Trevor has some slight improvement, keeping everything crossed for more progress

🙏🏼X

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

User

Posted 23 Jun 2017 at 21:34

That is amazing and you are amazing. I've been following your posts and I'm in awe of your strength of character. May the road ahead be smoother for you

User

Posted 23 Jun 2017 at 22:08

Extraordinary, awesome, amazing, brave, powerful, determined, glorious, loving, funny. You are a force of nature Julie. So pleased to hear that there's some hope, and better care, and that you and your wonderful man are shoulder to shoulder whatever the pirates of Beirut throw at you.

Not for the first time, you give me courage to cope.

Love and hugs

Ruth/Eleanor

xxx

User

Posted 23 Jun 2017 at 22:45

Always like a bit of good news on a Friday night and you have provided Julie. It sounds as if this corner is being turned, the rocky road continues.

User

Posted 23 Jun 2017 at 23:44

Thank God for small and big improvements

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

User

Posted 24 Jun 2017 at 07:20

Your post brought a tear to my eye. Wherever you both get your strength and determination from I do not know, I have nothing but admiration and best wishes for you both. Thank you for being there for Trevor, and sharing with us.
cheers
Graham

User

Posted 24 Jun 2017 at 10:37

Julie,

Trevor will be so proud of you, as we all are on this forum for fighting for your man. Fingers crossed this will be the turning point for you both.

All the best

Roy

User

Posted 24 Jun 2017 at 11:02

Hi Julie just to let you know that I can't pick up messages on fb at the minute but will be back home tomorrow night xxx

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

User

Posted 24 Jun 2017 at 14:17

Wow Julie

What an amazing man he truly is, with a most wonderful lioness by his side. It goes to show that proper treatment can and does work, we are with you every step of the way.

With love and awe

Devonmaid xxx

User

Posted 24 Jun 2017 at 22:30

HB dropped so he has had a blood transfusion today, he has lots of pain in his tummy which is very swollen he hasn't pooped in days so they are thinking this might be the problem . Scans have been ordered on his abdomen and bowel .

Bloody pirates are still hanging around .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 24 Jun 2017 at 23:02

Well get 'em to walk the bloody plank then.

Go on, you know you can do it. See them off. Pretend they are the original ward staff!!

Hope Trevor gets a result soon

Edited by member 25 Jun 2017 at 18:35 | Reason: Not specified

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

User

Posted 24 Jun 2017 at 23:04

My money is on you Julie - bloody pirates don't stand a chance. Go girl!

Lots of love

Eleanor

xxx

User

Posted 25 Jun 2017 at 17:29

Very worried for you Julie - it sounds like his body functions are all switching off one by one. I hope the boys have been able to see their dad over the weekend and that the medical staff are liaising with you properly now?

You are all on my mind xxx

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

User

Posted 25 Jun 2017 at 18:46

Julie

You are in our thoughts, I hope the boys are with you

With love

Devonmaid xxx

User

Posted 25 Jun 2017 at 21:41

The force is with you

hugs xxxxxx

User

Posted 26 Jun 2017 at 00:36

He had a bad night last he has become quite aggressive with the nurses he is refusing medication tried to get out of bed and pull out his catheter and cannulas.

He is adamant that they are trying to kill him , he told me it is a conspiracy and they don't work for the NHS. Part of me actually agrees with him !

My Man is not going down without a fight and I take my hat of to him but it is very hard to watch . They are going to put him under a light sedation and the plan is to scan his tummy to see if either his bowel is impacted or cancer spread is causing a blockage . The other thought is he may have spread to his brain which is causing the confusion his bloods are showing a improvement in the Sepsis but in himself he is getting worse.

The Wiz is in tomorrow so hopefully the scans will be organised , he is filling up with fluid his feet and legs are swollen.

The boys are quiet but worried it is so difficult to get boys to talk , James is doing his exams so an extra worry for me .

Us mums are hot wired to protect our children and I feel so helpless because I can't protect them from this.

I am under no illusion which way we are headed and I suppose knowing Trevor as I do I am not surprised that he is fighting as hard as he is.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 26 Jun 2017 at 01:05

I am so sad and worried for you - try to get some sleep and let's hope the Wiz can mobilise the right tests and scans quickly. Have you let James's tutors know what is happening? They will be able to apply to the exam board for special consideration.

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

User

Posted 26 Jun 2017 at 09:39

I've been thinking of you all night Julie, this is such a devastating time for your little family. I think the vast majority of us would wish to go peacefully and in my humble experience, a morpphine driver does make that possible. I believe they only offer this once there is no hope for any recovery, my father's passing from this life was made gentle by it, as was my sister's earlier this year. Given everything you've said I'm hoping that Trevor gets one so that the boys and you (and Trevor) do not have to endure this awful phase any longer than absolutely necessary.

I'm with you in spirit you fantastic wife, mother and human being. As always Lyn gives great advice re James, my daughter is a Teacher and I'm sad to say there is always at least one child having to cope with this every year, they will understand and do what's right for him.

Hugs

Devonmaid xxxx

User

Posted 26 Jun 2017 at 10:55

Hi Julie.
I am right there with you and can understand the anger and frustration you have experienced; graham has also suffered at the hands of incompetence whilst in hospital recently for kidney failure and he too is now walking the same road as Trevor. Stay strong Julie but lean lean lean as much as you like on all your friends and supporters on this site.
Yvonne

User

Posted 26 Jun 2017 at 11:51

I tried to post a reply early this morning but either the site wasn't having it or my computer is duff

Like Devonmaid I was awake a lot last night and your were all in my thoughts.

Thinking of you and the boys now Julie and hoping the Wiz can put a squib up the staffs' backsides and get to the bottom of what the main problem is.

I know the boys are a worry but you've proved yourself a tiger for Trevor and i've no doubt your cubs know they have you fighting for them and their dad.
They need you strong so make sure that you look after you (as much as you can anyway)

I wish there was more that we could do to help out, XXXXXX

Edited by member 26 Jun 2017 at 12:15 | Reason: Not specified

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

User

Posted 26 Jun 2017 at 15:34

Still sending love Julie. I am so so sorry you are all going through this. Definitely let the school know. You shouldn't need to do anything other than that - the school examination officer should be able to do everything else for you. I hope you get some proper answers soon x

User

Posted 26 Jun 2017 at 19:51

Love and hugs to you Julie. If this is the end I do so hope that it can be pain-free and peaceful. You and your amazing man have touched so many of our hearts.

Ruth

xxx

User

Posted 26 Jun 2017 at 22:24

Hi Julie

If they are suspecting brain mets maybe they should be also doing a mri scan of brain. Bob was started on high dose of steroids when they suspected brain mets and he responded well to this treatment.

Julie you are doing a terrific role caring for your Trevor. Sending you lots of love.

Lesley xx

User

Posted 27 Jun 2017 at 23:56

Trevor had some tests today that indicated no tumours in the bowel or abdomen - although he does have a chest infection.Still waiting for MRI.

Julie says his bloods are all over the place but he does look better than at the weekend.

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

User

Posted 28 Jun 2017 at 00:17

Thanks for the update Lyn we are all thinking of them.

Roy

User

Posted 28 Jun 2017 at 04:22

Julie reading your latest post brought back the memory of Mike in the Hospice he became very agitated and thought the nurses were being cruel to him. He thought he was strapped in the bed. It was very upsetting as I could see how kind and caring they were. It turns out he was very sensitive to the morphine and they had to switch to a different opiate the difference was remarkable. He also had a urine infection. Stay strong Julie we are all thinking of you Trevor and the boys.

With love Molly xxx

User

Posted 28 Jun 2017 at 05:46

Hi Julie
Just catching up. Not sure what to say but sending you lots and lots of love and hugs to you Trevor and the boys

Bri xxxxx

User

Posted 28 Jun 2017 at 07:02

As ever not sure what to say on your posts Julie , but Elaine and I have everything crossed for you all each day at the moment. Xx

User

Posted 28 Jun 2017 at 07:57

Thanks for the update Lyn.
Glad to know that the MRI was a positive sign.

Please pass on our best wishes

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

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