Next Treatment Please

Hi everyone

we held John’s funeral on Tuesday, it was a humanist celebrant and was well attended by friends far and wide and was a tearful, but joyous occasion. We made it not just about his 45 years RAF service but about us as a family and a few jokes. Our daughters lit a candle and one read a poem, son in law sang House of the Rising Sun and a wonderful friend read his RAF citation. The after party was a lovely reunion, lots of chat about the olden days (!) and a good time was had by all. On Thursday we interred his ashes, so now just a headstone to arrange. I’ve spoken to the chaplain at the hospital (he phoned me) to talk about John’s care, it was really helpful for them as well as me. 

So what now? Well I’m back to work tomorrow, needs must and all that. The motability car is going back tomorrow (they don’t hang about) so I’m back on shanks pony for a bit, quite looking forward to walking more. I don’t feel able to choose a car at the moment, too big a decision to make right now. 

The family have all gone home and life keeps going, so must I. Not sure how, but one foot in front of the other, one day at a time I’m told, and it works. 

I feel surprised that I haven’t fallen apart, but I did make a promise that I wouldn’t so maybe that’s what’s doing it (or his loss hasn’t hit me yet, or nine years of grieving for our life together has already taken it’s toll). Anyway, thank you all for the kind words of comfort, I’ll still pop in from time to time and am hopeful that our journey (not the last couple of weeks) will give some hope that a Gleason 10 is not necessarily an immediate death sentence. 

Love to you all

Allison xx

Edited by member 14 Oct 2019 at 21:05  | Reason: Not specified

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. 

What a terrible and constant ordeal you have gone through. It must have taken a lot out of you. Probably for the best that you are working for what must be a coming to terms time and relief for what John experienced. Despite all this you have also supported others on this forum as they have been impacted by this rotten disease. You are a truly wonderful person.

Hi everyone

a few things have happened (I've mentioned on other threads but wanted to keep it here too). John is now very comfortable on a syringe driver at home, his brother arrived a couple of days ago from Sweden, I called him on advice from the district nurse at 11pm his time and he arrived in the UK at 9.30 am. I don’t want him to miss time with his only brother as he missed his mum by a day and that hurt for years. Since then we have had lovely night sitters to allow me to have some rest, they aren’t in the least intrusive and I’m deeply grateful for their help. I did have a right old chase around yesterday to get some morphine ampoules as our pharmacy (usually excellent) were not good and my phone conversation went like this “the district nurses ask me to check if the morphine will be delivered before two so they can update the syringe driver, my husband is at end of life and needs this” “we only for the script yesterday” “ok, but this is urgent and he’s at end of life” “we only got the script yesterday and it won’t be in until four” “right, what have you got available and can I collect as I need two ampoules for the driver, we have four here” “you can collect the morphine but not the cyclosine” “ok, I’m on my way” phone put down. No, sorry to hear that, we will do our best, nothing. I popped into the GP surgery and mentioned it to them and they swing into action, taken into a room, cuddled, tissues, sit there, we will sort it all out, don’t worry, and they did. I did have to go to another pharmacy rather then the attached one, but two hours later I had enough supplies to last a few days. So far, that is my only encounter with a faceless, unkind person, I think they need an empathy transplant! 

John was asleep most of the day yesterday but ok and managed to eat something in the latter part of the day, he’s out of pain at long last and comfortable. I wish for nothing but peace now.

with love Devonmaid (for those that don’t know I’m also Allison) xxxx

Hi everyone

we have managed to get John downstairs thanks to St John’s ambulance (apparently the CCG paid for it thanks to hospice intervention). We have a hospital bed and have had the room set up for about a week now. John has managed to get over the infection but he is in a bad way, very cold and clammy and poorly. The hospice nurses have been amazing and have pulled the stops out to help me. I didn’t get a hoist as John did manage to walk that day, just a few steps but I hoped he would get better, he didn’t sadly and hasn’t walked since. We’ve tried to get him out of bed but it’s very hard, he’s only 70ish kilos, probably less now but it’s so difficult to move someone who can’t help you. My brother in law went home today, I don’t know what I’d have done without him, he was amazing. I don’t know what will happen now as I’m alone and can’t manage by myself so i think I do need carers now. Our nurse is coming on Friday so will organise it then. We may have to pay, depending on whether she decides that John is far enough into his end of life journey. I just don’t care really, I just know I cannot move him by myself, even to change sheets or his damp clothes. Our girls have both said they realise that dad is dying and accept it as his life is just awful. We don’t want to let him go but I can feel it coming. I think there seems a moment when you do accept it for obvious reasons and we have reached it. John is very upset, he feels utterly dreadful and frightened and I wish I could help that. I have no idea of timescale but nothing would surprise me now. The hospice nurse said that the cold and clamminess is a sign of his body being under severe stress, I wish he could be calm and happy but that’s just ridiculous isn’t it. I’m calmer than I thought I’d be, though my daughter called it numbness, and I think she’s right. I’m still working, I find it helpful to think of other things and John says it comforts him that I will have a life for myself, I even made it to a super dooper high powered meeting in London yesterday and really enjoyed it, (I’m not high powered but it was nice to be invited), I’m rambling again, but that’s what happens when you don’t know how to finish a post. So I’ll just say, bye for now, I’ll update soon.

Thank you for the kind words of support, I appreciate every single one of them. Being able to download here is helpful.

love Devonmaid xxxx

HI Devonmaid 

I wish you and John all the luck in the world with the bone scan and whatever further treatment you embark on.

It was good to see an update from you.

Kind regards

Kevan 

Just an update, a good one. hospital rang this afternoon asking me to bring John in Monday afternoon to see the head man. What a relief! 

Devonmaid

Hi all and thanks Lyn

its been a hideous day here, had to call the GP out as I thought John had sepsis again (I’m still not sure to be honest). He has been very confused today, GP says that it could be brain mets (I don’t think it’s that), the increased meds (patches now raised to 75mg) and morphine mix coupled with low sodium and high phosphate plus very high platelets (no idea why that is the case). He did give antibiotics as he likely has a urging infection, which also causes confusion. The girls came round and we spent the day as a family, not knowing if we would still be complete in the morning, we still don’t know and it’s  hard to sleep while John is so poorly. If he gets through, we have oncology on Thursday, district nurse is coming to do the bloods as I can’t face another hospital trip, I’ve no idea how we will get there on Thursday if we make it that far. 

The hospice have offered a hospital bed for downstairs as he can’t really go up and down at the moment, but I’m pretty sure we are going to put our own bed downstairs for his comfort. We have crazily bought a special chair (cost a fortune) so that he will be able to sit. I hope it arrives in time.

it’s a weird time, very sad but lots of laughs as well. I don’t know how long we have left together but trying to enjoy our time left as a family.

lots of love

Devonmaid xxx

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

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

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 

Hi Allison

Good luck with John's bone scan and ongoing treatment. How old was he on original diagnosis?

Hi JasperM

John was 61 on diagnosis and swore he’d make 70, guess what, he’s going to do it. 

Love

Devonmaid xx

Hi A, so good to hear your news. I will have done 7 years come January and though the last year has been challenging in many ways enzalutimide is still holding back progress (17 mths now) so hopefully that or Abby will bring some respite, maybe even pain relief. Hope you and John enjoy Xmas and we continue to keep going as long as we can thinking of you both.

Edited by member 23 Dec 2018 at 20:03  | Reason: Not specified

DM

Hugs to you all, not much I can offer in the way of practical advice but hopefully knowing we are here for you might help.

Thanks Chris

Just wanting to send my love and say that you are in my prayers.

Steve x

Ian

Thanks my lovelies

just had a really bad day, the comfort blanket has been received and is being snuggled as i sit here. Things are much the same, John says that he feels the same as he did a few NYEs ago when things went badly wrong (twice now, this is the third awful NYE). we have our SIL's party to get through tomorrow somehow and then i don't know, into battle i think. Katie, i don't have access to palliative care doctors yet but that may change as of next week when i start to kick off at being left unsupported. 

spirit is back, Devonmaid is back fighting for her man.

xxxxx

DM, well done for regrouping and finding the energy to keep going. Sometimes it's all just too exhausting and the energy goes into battling doctors/secretaries/nurses when what you really want to do is enjoy what you can. Hope you enjoy SIL's party, have a vino collapso for us.xx

I do so hope that you see some effects from the Enzo quite quickly. We did with Abi last year, so I am crossing my fingers that it is the same for you.

Hello friends

i haven’t updated for a while as I’ve tended to tell our story on Kentish’s post but probably need to update this thread now. So John has been doing well on Enzalutimide, PSA now 12 and the LDH and ALP in normal range though red cells HB low and blood volume low as are white cells. John is extremely tired but we will take that thank you. 

However, he is currently languishing in hospital with sepsis. He is doing ok at the moment, so out of immediate danger. What happened was that I was away for work in Bradford and was stuck on the motorway but received a call from my daughter to say that she hadn’t had a responding text from her dad and had gone round to find him on the floor, having fallen four hours previously. He’d hit his head in the bathroom on falling, crawled out (unable to get up), eventually tried to pull himself up on the bed and had fallen backwards and hit his head on the wardrobe and just couldn’t get up again. She found him rather confused, got him into bed, gave him tea and some weetabix and called me. I called the GP who asked me to get someone to get him over there as we suspected a UTI. My other daughter did manage that and he was seen at around 6pm and given antibiotics for a UTI, he was still a bit confused at this point and obviously unwell. My daughter stayed until I got back at 10pm, and at this point he was still speaking to me, but I put the bins out and came back and he was shaking like a leaf, when that stopped I took his temp and it was 39.8, he was grimacing and unresponsive except for muttering along to five men apparently in the bedroom with us. I then called 111 who were amazing and sent a paramedic, who diagnosed sepsis after a few tests, bloods, BP etc, temp now over 40. Ambulance blue lights off to A&E and we spend the night and next day in there. He is now finally on a ward and much better, although he is still poorly. The UTI was so bad his blood was full of bacteria and frankly, I could smell it when I got back into the room after I put the bins out. I can only thank the much maligned 111 call operators and paramedics. And also I must admit that the horrendous delay on the M42 that kept me from home until 10pm probably saved his life as otherwise I’d have been asleep in the other room by then after a long day. He would not have been able to call me. What a day. Thank god for the current focus on sepsis too as the paramedic over ruled the call centre who tried to downgrade his priority 1 call. 

Phew!

Thank you

The oncology team has stopped the Enzalutimide, subject to a review on Monday. We were warned about the dangers of falls and enhanced infection risk but frankly I’d rather take that than abandon treatment, but I doubt my voice will count. I’ve activated a scheme to get an alert necklace put in place for when he comes home. Currently he is on a ward where he is comfortable enough but seriously, the lack of staff at the weekends is very concerning. I no longer fear for his immediate safety though, just worried about whether they will allow him to continue the Enzalutimide and if not, we only have steroids and or trials left as our fall back.

Trying not to anticipate the worst, but you guys know how it is.

lots of love

Devonmaid 

Thanks for the kind thoughts my friends,

we’ve upgraded the patches to 37.5 mls of Fentanyl as of today, the additional patch takes 18 hours to work properly so still on the morphine and it’s not quite hitting the spot. There is a nasty smell at the site of the SPC but I’ve had a district nurse check it and she says it doesn’t look infected. Catheter change is Tuesday and in future they will do it more often and at home. Of course I’m worried about another dose of sepsis especially as I’m off to Bradford for work for a couple of days next week. The pain is in the hip, leg and knee, both sides now. I suspect some is the cancer spread and some is because of walking differently with the pain so putting pressure on joints. We’ve had yet another chat about me getting a Zimmer frame for him as his legs keep collapsing under him, it would be safer. Then he backtracks and says it’s probably his muscles and he will be ok. 

I think I need to make an executive decision on that one.

love Devonmaid xxxx

Big hugs to you

love Barbara xx

Thinking of you both, love Janet, x 

Happy anniversary Devonmaid. Hopefully some RT can be used to reduce pain.

Dear DM ,just want to say I’m thinking of you .
Xxx
Debby x

Edited by member 23 Jul 2019 at 02:57  | Reason: Not specified

Thinking of you and wishing you a time of love and sunshine. Do whatever you can to make each other happy and have fun with those precious grandchildren. I pray that you will have longer than you think and that you will have lots of support. X

None of us oldies will escape this

Hugs Barry

Keep the Faith

Love and hugs.

J.

As you know DM I don’t very often drop in on the forum these days but have been silently reading and watching from behind the scenes .

my heart goes out to you and John in what is know such a sad time in your journey, I will always remember your kindness and help in those terrifying early days of Trevor’s diagnosis and I will be forever grateful to you for that .

i tried to locate the comfort blanket for you but couldn’t find it but to be honest the last time I saw it , it was filthy covered in tears / chocolate and wine .

i will confess to not being much of a knitter but have managed to knit you a super duper huge comfort blanket big enough to wrap your whole family with love . 

It will arrive am tomorrow by DPD . Xxx

BFN

Lots of Love and best wishs

Barry

My amazing superman has turned the corner today and is lucid again! The vile muck coming out of the catheter tells the story of what was causing his illness. For the first time in three days he’s not hallucinating and is coherent. Antibiotics seem to be working. I can’t believe it but am so happy for today. I know it’s a reprieve but it’s such a relief for now.

love Devonmaid xxx

I am so so pleased to hear this as I'm sure everyone will be. Here's hoping you get many more days of being together as every day must be so precious to you all now. Long may they continue.

Thinking of you all

Ann x

I feel so sad for you both. We are nearly 10 years along this trip and thankful for every new day. My oh has coped so well with treatment and side effects and tries not to be down for long. So much has changed for us that we never expected and we have become closer in some ways. I don't know how we will cope if things get as bad as it has for you. Sending prayers for peace and freedom from pain. 

Best wishes to you and your family.

Debby

Keep the Faith

J. Xx

This makes really sad reading DM. My thoughts are with you and your family. 

Xx

I don’t write much nowadays but read everything. My heart goes out to all your family and hope that you get some smiles amongst the hard times. Thinking of you all.

DM

Thinking of you, take care of yourself.

Thanks Chris

Pretty sure it contributed to his eventual death but he was comfortable and not stressed and we were all there when he went.

XX

Barry

Love Tom xxx 😍

Things have quietened down now, John is less responsive and sleeping nearly all the time, it’s much better than the extreme agitation. Last night was spent with hiccups but I had a brainwave this morning and gave him some lorazepam and it’s stopped it so he can rest again now. I’m grateful for the carers coming in, it’s nice to see him washed and clean, much better than I managed it and safer for him. They always ask him if he wants to get out of bed but he never does. It was my birthday (and our little granddaughter’s) yesterday, so he got past the family birthdays thank goodness, no one wanted to have the sadness of him leaving us in those days, least of all John. He can barely speak now, reading up on the signs of dying, he is close now but much more settled and peaceful. I ask for nothing more.

with love Allison xxx

So sorry to hear about the stage John is at now but good that he is more at peace. Just before my mum passed the worst thing for us was mum's extreme agitation. I asked  the GP if he would consider increasing her midazolam ( she was on syringe driver by that stage) but he refused although the nurse agreed with me. Thankfully over the next 2-3 days she lapsed into a more settled and peaceful state although we could no longer have any conversations with her.

John will of course still hear you some of the time and all you can do is hold his hand and tell him how much you love him which I'm sure you are all doing anyway.

Just wishing you all peace over the coming days.

Ann x

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

Bri xx

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.

You deserve great credit for your love, support and bravery, you are one in a million.

John x