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User
Posted 19 Sep 2019 at 19:14
XXXXXX
User
Posted 20 Sep 2019 at 09:09

Thinking of you all, Allison. I know how hard it is, but am so relieved to hear John is more peaceful. Remember John can still hear and feel the love around him, and in time this will bring comfort and strength to you all.  Love Janet, xx

User
Posted 20 Sep 2019 at 12:38

It is such a difficult time for all involved. We experienced this only a matter of weeks ago and reading your posts is so familiar. My heart breaks every day and had done from long before my daddy left us so I know how you and your family are feeling. Such a distressing time. All you can hope for is the strength to get by and the peacefulness your husband so deserves. They go through so much towards the end and its extremely hard to watch. I feel your pain completely and wish it could be taken away from you all. 


My thoughts are with you. 

Miffy
User
Posted 20 Sep 2019 at 16:27
Xxxxxxxxxx
User
Posted 22 Sep 2019 at 00:18

My beloved John died tonight at 8.20pm. To say the journey was traumatic is to say the least. We are still waiting for someone to certify the death before we can contact the undertakers. The final days were awful and last 24 hours were beyond belief, he developed pneumonia and we ended up having to put him into the recovery position to drain the vile liquid from his throat and chest. John was a tough cookie and didn’t give in and so the passage from this world was drawn out and upsetting for all concerned. My heart is broken.


love Allison 

User
Posted 22 Sep 2019 at 00:39

Oh Allison ,


my heart goes out to you and John and your lovely family, Trevor also passed from pneumonia and so I understand how awful that end can be .


your man was so strong and has fought so hard to stay and be with you all and although this has made his passing so long and and stressful for all of you it is a testament to his strength. Not immediately and certainly not in the near future but in time to come once you have all started to heal from this you will be proud of how much he wanted to stay with you all and how strong he was . 


My heart is breaking for all of you but as I have recently said to someone else , life in the future will be OK I promise it doesn’t seem like this at the  moment But it will be ok .


lots of love 


BFN 


Julie XXX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Sep 2019 at 01:24

Even when we know it is coming, and that it is by far the best thing for our loved ones, this hits you like nothing else can, doesn't it, Allison.  I am so sorry to hear your news, and send condolences to you, and your family.


Like Julie, those of us who have been through it know a little of what you have been through, and can understand how you must be feeling. But everyone's path to this stage is different, and indeed different going on from here.  You have shown incredible strength and love over the years since diagnosis, and particularly in these last months and years.  Julie (who in my eyes is the font of all wisdom) also gives good advice - there is a path forwards in time.  I was worried that my lasting memories would be just of that last stage, but in time the better memories come forward again.  I hope that you and the family can share all those wonderful memories together soon.  Take up any offers of support now, and get as much rest as you can. 


Sending love across the oceans, Teacups

User
Posted 22 Sep 2019 at 06:27

So very sorry to hear about John passing . He is at peace now and this damn cancer can't hurt him anymore.


My sincerest condolences to you all and hope you can find time for some rest over the coming days. I know how mentally and physically draining it all is. It feels like a relief sometimes when it actually happens.You just want their suffering ( and your own) to end.


Love and best wishes


Ann x


 

User
Posted 22 Sep 2019 at 06:45

So sorry to hear your news. Please accept my sincere condolences. Remember that there are lots of us here any time you need a chat.


Phil

User
Posted 22 Sep 2019 at 07:19

I’m so sorry to hear about John. My thoughts are with you and your family.


i hope that I can be as strong as you have been when the time comes. You have been an inspiration to us all. 


Take care of yourself now Allison. 


X

User
Posted 22 Sep 2019 at 07:30
Dear Devonmaid ,my thoughts are with you and your family .
Debby
User
Posted 22 Sep 2019 at 07:54
Sincere condolences to you and yours.
Keep the Faith.
J xxx
User
Posted 22 Sep 2019 at 07:56

Allison


Please accept my sincere condolences. Take some comfort in the thought that John can now rest in peace. Look after yourself. Lots of love and hugs.

 

Thanks Chris
User
Posted 22 Sep 2019 at 08:25
Allison

So sorry to hear this news this morning. You and John have been the heart of this forum and his loss affects us all. Sincere condolences. My mum died from bronchial pneumonia in 2003 so I know very well what this awful end means. Take care in what must be a very distressing time for you.

Dave
User
Posted 22 Sep 2019 at 09:12

Allison, I so sorry to hear this news , although we all knew that it was coming.
John is at peace now , this Cancer cannot hurt him or you any more 
My heart aches for you and yours 
Barry xx

User
Posted 22 Sep 2019 at 09:12
Dear Allison

Sorry for yours and your families loss, you have been so strong. At last John is at peace now.

When our bodies die we live on in the memories of our loved ones and I'm sure you will have many happy ones.

Good luck for the future.

Cheers
Bill
User
Posted 22 Sep 2019 at 09:17
Dear Ali a blessed relief and release for you all. RIP John now. Sending our love xx

If life gives you lemons , then make lemonade
User
Posted 22 Sep 2019 at 09:19

So sorry to read this Allison.   I know how awful the end can be after seeing my dad go through it and it must be so much worse for you with it being your husband.   Sincere condolences to you and your family.  I'll be thinking of you all xx

User
Posted 22 Sep 2019 at 09:20

Sorry to read this. Condolences to you and the family.


 

Ido4

User
Posted 22 Sep 2019 at 09:39
My heartfelt condolences to you and your family Allison.

My thoughts are with you.

Rest easy John.
Roger
User
Posted 22 Sep 2019 at 10:32
So sorry to hear your news.

May John rest in peace
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 22 Sep 2019 at 14:03
😢

xxxx
User
Posted 22 Sep 2019 at 14:18
Dear Allison.

Please accept my sincere condolences at the loss of your John.

I know it is currently difficult for you to think over all the happy, funny times you shared but I really hope that at some stage in the not too distant future, you will be able to sit and think of John and remember.

Sandra
We can't control the winds - but we can adjust our sails
User
Posted 22 Sep 2019 at 14:32

May he rest in peace, you have been the most wonderful wife Allison. 


I hope one day you will have enough healing to have special memories. 

User
Posted 22 Sep 2019 at 16:42

Dear Allison,


I am so deeply saddened to know that your John has passed on.


Words are never enough at times like this, and I can only try.


 


You belonged together and always will do. John was a lovely man, a true gentleman, and so very strong.


His pain is over but yours must be awful to bear.


 


May I say that any of us men blessed with a wife such as you is feeling your pain more than we ever feel our own.


You have been a wonderful wife through everything that you've gone through.


We husbands with PCa  understand only too well how we wouldn't cope without our devoted wives. They are absolutely precious.


 


Sincerest condolences to you from us all.


 


George & Lynn

User
Posted 22 Sep 2019 at 20:25

Allison


Heartfelt condolences to you and your family.


Your posts where one of the first that I read when I joined this forum ,the strength and positivity that I gained from them has helped me through year one of this disease  and I am inspired by yours and John's courage to the end. 


Much love and respect


Chris.

User
Posted 22 Sep 2019 at 20:58

I am so sorry to read of your loss. My sincere condolences, you could have done no more. 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 22 Sep 2019 at 21:26

Thank you my friends, I’ve got great comfort from your words. I didn’t know how things could be, I think I had a romanticised view of it all and no longer do. I will though, never regret looking after John at home even though it was not easy for any of us. Some nurses were definitely more sensible and others were in the “we mustn’t sedate him” camp (lunatics one and all). I can’t imagine life going forward but another part of me is grateful for the nine years of extra love I had and am glad I know I did all I could do for my love. Hospice or home? It’s a tough one, I am glad I managed what John wanted but it took a massive toll on me. It did give the girls much more time with him as they live close and the Hospice is further away. it’s a personal choice but a hard one, I don’t know which is best, certainly for medical help Hospice is immeasurably best. We were subject to the individual choice of nurses about whether John got pain relief or not, and I had to fight (and didn’t always win) a few times. Palliative care is not a simple course when people have strong views (nurses mainly) I did not realise that and waiting, the endless phoning for help and waiting, please consider this aspect when deciding, it’s appalling having to wait hours for support, I can’t bear to think of the time we spent waiting for a nurse to come. And as for the last two days, it would have been so much better handled in hospice, but John was far too ill to be moved. Such a tough decision to make, always worth knowing, I didn’t know how bad things could get (here I’m talking about pain management and pneumonia), beyond my capacity to manage and thank god for the carers who knew what to do, even though it was ghastly. I know this is a bit muddled (the last few weeks have been like that) but I wanted to get down how tough this decision has turned out to be. Rest in Peace my darling John, a fighter of the first order. 

User
Posted 22 Sep 2019 at 21:38
Heartfelt condolences to you and your family, no more suffering Geoff.
User
Posted 23 Sep 2019 at 02:55
A very hard post to write Allison but you did what John wanted, and it became harder for you towards the end, but cherish the good times over the 9 years of his suffering that has now come to an end, now it’s time for you to get your health back to normality and for the grieving to start, for which take all the time you need.
We are all behind you in thoughts and spirit.
xxxxhugsxxxx


Chris.
User
Posted 23 Sep 2019 at 11:40

So sorry to hear of your loss Allison , please accept my sincere condolences. RIP John.


Roy

Edited by member 23 Sep 2019 at 11:41  | Reason: Not specified

User
Posted 23 Sep 2019 at 12:56

Sincere condolences to you and your family.

User
Posted 23 Sep 2019 at 13:18
Sorry for your loss Alison

Bri xx
User
Posted 23 Sep 2019 at 16:59

Dear Devonmaid, 


I have only recently joined this forum when we found out my husband has advanced prostate cancer. Yours was thefirst positive post I found where diagnosis was similar and have followed your story since.  


Very sorry to hear of your husband passing and what you have been through. You have both been so brave.


Love Mrs MAS x

User
Posted 23 Sep 2019 at 21:40

I am so sorry to hear your news and wish you every comfort and peace during the coming days. You have all been wonderful through all of this. Thinking of you.

User
Posted 24 Sep 2019 at 14:43
So sorry
User
Posted 24 Sep 2019 at 15:05
My lovely friend, I remember when you first joined ... advanced already and such a dire prognosis. Well, if it was a competition, you and John won and the cancer lost right until the last few minutes before the bell. I cannot think of anyone that has been more dignified and resolute than him, I can think of only two or three wives / partners that have been such fierce lionesses, I can't think of a more distressing end to the story. Once the initial busyness of arranging everything has passed and you have time to start finding your new normal, the comfort that you will perhaps find will be knowing that John died in the place that his heart knew as home, that his fears will have been calmed by the quiet voices of those he loved most in the world and that he felt the loving touch of hands that he knew as well as his own.

You were amazing, you were strong, you gave it everything and more for 9 years. I am holding you in my heart xxx

Fly free, John x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Sep 2019 at 19:43

I am so sorry to hear your sad news but at least John is at rest now.


 


barbara xxxx

User
Posted 24 Sep 2019 at 23:46

I just want to applaud you in how you have managed and coped but also for your honesty Allison , your posts have been no holds barred and telling it how it is . 


Our birth into this world is sometimes natural and easy just as nature intended with no intervention, for others we need medical help and that help is usually immediate, because it’s a new life starting .


sadly when it’s a life leaving this world emergency is not the first thing on the drained NHS resources.


I really feel you have highlighted the issues , yes we all want our loved ones and our selves to pass away peacefully at home , but for the vast majority of cases that is not the case . Our drained NHS just doesn’t have the resources to cope .


so where does that leave us , for yourself in the terrible situation that you have been in and I can truly understand what you have been through , did any of you including John benefit from that awful situation, I really don’t think so 


did Trevor’s passing in hospital make me feel better than him passing at home , I have to say yes because every thing was at hand when he needed it , would he have known the difference absolutely not he was unaware at that stage . 


Would I have preferred option 3 him being in the hospice absolutely, the end of life care would have been handled by experts . 


None of us can predict our ending but as you say the image you had predicted in your head certainly didn’t match the reality.


my wish for you and your family going forward is that in time you can push the last few weeks that you have endured as far back in your memory as possible and be proud of yourselves because you are all Heroes and your John was a true Warrior.


BFN


XXX Julie 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Sep 2019 at 00:24
Well said by one of the other two or three lionesses - love you Julie xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Sep 2019 at 09:03

Julie and Lyn


Friends and supporters forever. I did debate whether to be so graphic (and it could have been a lot more graphic) because I was never once told that the extreme symptoms could occur and had to deal with that at home. I was never told that if he was to be admitted to hospice, this or that might be the best time to do it as it could be too late. I didn’t know that the syringe driver and the stat doses would be an ongoing problem, I didn’t know about the waiting, phoning, constant repetition of “end of life help” would wear me down to the floor. I will never know if being at home was the actual right course, though I genuinely feel that it wasn’t in the end. I take comfort from it being easier for us to be around and the familiar home noises must have been some comfort to John.


I wanted though, to make people aware of the things I did not know and you don’t find on the internet as it should form part of the decision making. I wish the hospice had visited me to see how things were going with John and stepped in to advise me earlier. I will gently feed that back to them. Some nurses who came here were lovely, some were off hand and I was told on several occasions that they did not want to over sedate John, seriously this was the worst comment ever, it meant that he was aware until the end, and that hurts me dreadfully. I asked him, a couple of hours before he died, if you can hear me wink, and he deliberately winked. When the girls came in a few moments later, he did the same to them. It was a very deliberate act. 


I know that this horror will calm down and we will be ok but please for anyone reading this and wanting to be at home, think about when and if it might be right to go to hospice, find out beforehand and make your decision based on what I’ve told you here. It’s raw and real and something to think about that you won’t find in the sanitised reports.


i don’t want to scare anyone, but Julie makes the point about birth and that’s what I was told, birth and death are processes that have to be gone through, some are easy and some are not. I don’t think there is anyway of knowing which you are going to get, maybe the fact that John’s dire prognosis and the fact that he survived it for so close to nine years should have warned us that we were dealing with a strong man, and that he would not go easy. I don’t know.


sorry for the long post, but I need to get this stuff off my chest. I hope it doesn’t upset those who will come after too much but I’m hoping that it will be useful advice when thinking about the end game. I can’t take the emotion out of it as it’s a totally emotional event.


Love to you all


Allison xxxx


 


 

User
Posted 25 Sep 2019 at 10:21
I have found following these threads moving beyond belief, and my heart aches with sadness for what you, and so many others have gone through.

We are three years into this cancer situation now, and right at the moment things seem to be going well. It has been a rocky ride, and as you all know it is a rollercoaster of emotions, anxiety and learning to live with the changes to the life and relationship you have shared.

At the moment some very close friends are approaching the end of life situation, and it is very difficult to be just on the outside, trying to offer help and support, but not to interfere, and at the same time knowing that there but for the grace of God, we may one day find ourselves. I hope I can use what I have learnt from your posts to offer advice to my dear friend.

I hope that you and your family can find peace, and accept that you did all within your power for your beloved John.
User
Posted 25 Sep 2019 at 14:13
Thank you Alison. I think your post reflects the selfless person you are. You are thinking of others at a very difficult and overwhelmingly sad time for yourself and your family.

I think the information you have shared is essential to help others think about their options and to plan for the circumstances most of us tend to avoid thinking about.

Thank you but also please think of yourself and your daughters at this time.

Bri xx
User
Posted 25 Sep 2019 at 16:16

Allison, I think you have done exactly the right thing to open up this conversation, and especially at such an overwhelmingly sad time for you and your family. 


None of us can know what can happen. As with all stages of this disease there are so many variations, and all we can do, at best, is to try to plan for what we want, and you certainly did that for John.


So much can change at the end, minute by minute sometimes. We all do the best we can with the knowledge we have, and have to adapt as circumstances change. 


I did find that communication wasn't always as good as I had expected, either in the hospice, hospitals or local services. I really feel we should be able to talk more as so much seems to be unsaid and there is often confusion at a time when we all need compassion and understanding.


Take care of you, Allison, you've had such a long time of dealing with so much, and you must be exhausted. In time memories will become more comfortable, but initially you are doing well if you manage to put one foot in front of the other, taking life an hour or minute at a time if you need to. 


Love Janet, xx

User
Posted 25 Sep 2019 at 22:15

Dear Allison - I am so sorry for your loss but I also wanted to thank you for your brave honesty. There are many of us following the same path and - difficult though it is to read this detail - it is so valuable to read your experience to help us make informed choices. 


Sending you love x 

User
Posted 28 Sep 2019 at 15:15
Dear Allison so sad to read that your beloved husband had passed away.He had suffered for long enough and is now at peace. All my love and good wishes to you for the future ... Tom
User
Posted 01 Oct 2019 at 18:50

John’s funeral will be held next Tuesday, lots of RAF attendees to honour his 45 year service. Planning the service has been emotional and cathartic, lots of tears and laughter as we discover so many little things he saved, such as an IOU from our daughter dated 1998 (it was funny). The service will be humanist as John remained an agnostic throughout his life but did say to both girls that he would be waiting for them when their time comes, so I think I know his views on an afterlife. We went to see him, all suited and booted and wearing his RAF tie and looking absolutely gorgeous, at the chapel of rest, I’ve never done anything like that before and am glad i did as I have a much nicer image in my head now. 


The local community health tram have asked me to come in and talk at one of their training days about how I experienced their service as they have noted that things went wrong for us and shouldn’t have. I won’t be complaining, just giving a positive view of how they can talk to people in our situation and help us to make decisions that would work better (knowledge is power in my opinion). They looked after us well as far as it goes, and I won’t forget many of the lovely people (especially the NHS urgent care team) who looked after John as well as anyone could have wanted. 


I have been out and about a bit, it’s weird after so long having had a thread to home always bringing me back quickly. It’s a sense of freedom, I don’t feel guilty about it as I have done my absolute best for my love and now I need to live some sort of life. He would never wish to deny me a life, that much I know. 


I want to thank you all for your kind words, I know I was very, very upset at what happened but I’m trying to let it go, with the exception of trying to help improve things in a gentle way.


lots of love


Allison 

User
Posted 01 Oct 2019 at 19:09
Alison, your posts have been simply beautiful whilst sad to the core at the same time. Thankyou so much for sharing and I know it’s helped you also. You are WAY up there on my list of people who deserve respect to the full xx

If life gives you lemons , then make lemonade
User
Posted 01 Oct 2019 at 19:22
Lovely words xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Oct 2019 at 09:02

Dear Allison


i am a wife who has only just begun this journey. My husband has been recently dx with advanced prostate cancer with mets in his bones, bladder and lymphadenopathy in his groin and para aortic glands and a Gleason of 9. 


Reading about your incredible journey has been very sad and heartbreaking but really importantly it highlights to rest of us that will face this inevitable end some of the challenges but also the choices we can make or consider. 


I wish you all the very best for your future and like you say your John would want you to go on living and enjoying life. 


With love and thanks for sharing your journey so bravely  


SunnyJane 😍

 
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