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Next Treatment Please

User
Posted 17 Dec 2018 at 22:22

Hi all


its been a while since i posted an update on John’s progress. A quick saunter through the last eight years, PSA 25 on diagnosis, gleason 10, spread to lymph and bones. Usual treatments for the times, however, the addition of Stillbestrill halted the progress of the cancer for more than three years and we've had Radium 223 (didn't help) and now chemo (hmmm, not sure whether it helped but ended up with PSA slightly lower than we started but with disease progression we think, but with ten chemos under the belt still here, so yay). But, health not good, pain not good, now on fentanyl patches and morphine, collapsing hips, now waiting for a new bone scan before decision to be made about abiraterone or enzalutimide, hoping this decision is made quicker than the currently scheduled two months. Hospice has stepped in to order blood tests tomorrow due to severe itching (thank heavens for wonderful hospice nurses). 


As a summary, we have been incredibly lucky to date, i have a feeling our luck is running out but maybe we still have a way to go as we still have options (i hope).


I would have gladly taken this eight years ago, i remember begging the heavens for four years and I have had double that so far. I am grateful for every day I get to spend with this wonderful man. Wish us luck for the coming bone scan and potential liver troubles.


love to all here, so happy to see so many familiar names still here and fighting on 


Devonmaid xxxx 

User
Posted 13 Oct 2019 at 22:01

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

User
Posted 19 Sep 2019 at 09:49

We passed a quiet night and John is peaceful at last, his breathing is shallow but regular and he is warm. It is a more comfortable situation for all of us. The end cannot be far away but his strength is legendary. 


love to you all and thank you for the kindness, I can't tell you how much it means, though I know how hard it is to write anything.


Allison xxx


 

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 04 Sep 2019 at 12:20

Poor John had a terrible night, he’s been very sick, so I called the district nurses this morning and they’ve come and put a cannula in his arm and given him anti sickness drugs through that. I’ve had to call them again to administer morphine as he can’t take it by mouth right now. They are so good and kind, I can’t thank them enough for their help. I tried to get John on a bedpan but the agony was dreadful, his pelvis is where the worst of it all has been. I think they will start a syringe driver beforehand many days have passed. 


I see utter weakness in him and it’s pretty bloody awful if you’ll forgive my words. I asked him if he wanted to go to the hospice but he said he wanted to stay here so that’s where he will stay, I’m very glad.


love to you all, please don’t feel the need to respond, I know how hard it is to say the right words. I know that people on here think of us and that’s enough.


love Devonmaid xxxx

User
Posted 17 Oct 2019 at 00:22
Allison

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.
Barry
User
Posted 21 Aug 2019 at 22:54

DM, 


Very sad to read your post but I can identify with your words especially the part of reaching acceptance , those last few days with Trevor I had reached that point and was incredibly calm .


I definitely think when as we both have had such  long and stressful journeys and in all of that time dreading that finale day , it’s not just a release for the person suffering but for the whole family .


you have such a lovely close family to help you through the next phase of Johns journey , if I could wish you both anything at this time it would be Peace 😘


Today would have been Trevor’s 70th Birthday and as a family we have had a thoughtful reflective day  with  laughter remembering the funny times .


BFN Julie XXX


 


 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Sep 2019 at 07:17

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


 


 


 

User
Posted 18 Dec 2018 at 08:01
Your men may be suffering with PC but they have certainly been blessed with their women!!
User
Posted 21 Aug 2019 at 21:18

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

User
Posted 25 Aug 2019 at 12:01

Hi everyone


I had to call 111 yesterday as I was certain that the infection was back (one advantage of a catheter is that problems can be seen quickly in the urine (and smelt)). At 2am the most wonderful German doctor came out to us and was simply brilliant. What a bedside manner he had. So kind and gentle and reassuring. He gave John an injection to stop the terrible spasms (no one has ever offered that before) and of course antibiotics for the obvious recurrent infection. Luckily I found four of the right type of antibiotics in the house so with the doctor’s permission  was able to give one straight away, which I think was lucky as poor John has become more confused again and very sweaty, but not hot. I do think that the infection risk is massive with an SPC and as John has become more vulnerable this risk has increased. The hospice are sending the hospice at home team from tomorrow with a view to a full care package once we have got used to it. They do things gently here and it works well. I do feel hugely supported and the kindness of others has been a great boost to us both during this difficult time. I don’t know how John continues to fight these infections but so far, he has. He even managed to walk a little yesterday but of course, that may have made the infection move around (technical option there). Every day is a bonus. 


Love Devonmaid xxxx

User
Posted 18 Dec 2018 at 09:04

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 

User
Posted 29 Dec 2018 at 22:36

Saying a quiet little prayer to both devonmaid and kentish , tough times for you . Your posts have inspired guys like myself who are new to this disease


 Where there is life there is hope. Good luck and much love sent.


Chris.

Edited by member 29 Dec 2018 at 22:51  | Reason: Not specified

User
Posted 11 Jan 2019 at 16:38

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

User
Posted 17 Jul 2019 at 21:10

Just a quick update, it’s our 43rd wedding anniversary today and I managed to get John to eat something nice, which was great as his appetite is poor and his tastes have changed so much recently. His pain levels are not nice, he’s now on 30mg of morphine every four hours and a 50ml fentanyl patch plus amitryptillin for nerve pain. The hospice and OT have been out thankfully offering help and guidance. We see the oncologist on Monday(can’t come soon enough as I prefer to know what’s actually happening rather than speculate). It’s a waiting game as usual, I’m hoping they might be able to do some RT, but it will depend on the calculation of what he’s already had. Other than that, I don’t know.


I will let you know what happens after Monday.


love Devonmaid 

Edited by member 17 Jul 2019 at 21:10  | Reason: Not specified

User
Posted 10 Aug 2019 at 01:04

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

User
Posted 05 Sep 2019 at 17:44
Remember our old mantra - who cares for the carer? It is so important to look after yourself as best you can otherwise who will be there to look after everyone else xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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 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 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 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 18 Dec 2018 at 00:56
Hi Devonmaid

Hope John is able to get on another treatment and hope they get the itching sorted (poorly kidneys can cause this sort of itching) I am the same as you Tony is gleason 9 and I was pleased to get to 5 years and now its 12 years on. Tony is on his 3rd of 10 chemo now 4th one 28th dec. Hope John gets his pain sorted out and hopefully more options there seems to be so many more than when Tony was first diagnosed. good luck



love barbara xx
User
Posted 18 Dec 2018 at 08:49

Hi Allison


 


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

User
Posted 18 Dec 2018 at 13:49

DM


Sorry I don't know the answer to your question, but love and hugs to both of you.Take care.


Thanks Chris

User
Posted 18 Dec 2018 at 15:46

Hi JasperM


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


 


Love


Devonmaid xx

User
Posted 21 Dec 2018 at 18:19
Sadly it's not true in every case but it seems to me that an increasing number of men these days are living well beyond the predicted time given by their oncologists. Perhaps this is largely due to the benefits of new treatments and protocols not taken fully into account because oncologists understandably base their predictions on past experience.
Barry
User
Posted 23 Dec 2018 at 20:02

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

User
Posted 23 Dec 2018 at 23:42

The most amazing thing is that John is still abi / enzo naive. It doesn't matter so much that the PSA didn't drop much; all the indicators are that the chemo will make the abi or enzo more efficient. I hope you can get the onco appointment brought forward though; he has already had more pain than anyone should have to endure.


I remember you first joining, and Barry & Yorkhull. Amazeballs that you are still here on the platform with your sandwiches, as Julie would say.


Lots of Christmas love to you and all the family xxx


 

Edited by member 23 Dec 2018 at 23:43  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Dec 2018 at 22:01
Sending you hugs. Sorry John is having all those problems and hope he gets some help very soon.
User
Posted 29 Dec 2018 at 22:18
Sending you the comfort blanket, I've had it for a while and it sounds like you could do with it right now.
I've always felt a bit of a fraud each time I've taken oh to a&e or had the emergency Doctor out but in reality, every time it was the right place for him in that moment.
There is never a good time to make the call and I feel weekends in a&e are the worst (except for Mondays, everybody waits until Monday ), do you have an emergency Doctor on call system where you are?
I have a palliative care team number which prioritises oh for the doctors to come and see him. They then make the executive decision about whether to go to a&e or not. Do you have anything like this? If you are already in contact with your local hospice, they may have details of who to call to help you decide what to do.
Wishing you all the best.
Katie xx
User
Posted 29 Dec 2018 at 22:58

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


 

User
Posted 30 Dec 2018 at 01:47
Oh love, I don't know what to say except if you are worried then A&E is the right thing to do. Not everyone has pins and needles.

Sending you lots of spirit xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Dec 2018 at 03:26

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


Steve x

User
Posted 30 Dec 2018 at 08:36
Big hugs and hope you manage to get things sorted.

barbara xxx
User
Posted 30 Dec 2018 at 18:35
Sending hugs and love to you all DM. Hoping things can be sorted so that John feels a bit better soon.
Ian

Ido4

User
Posted 30 Dec 2018 at 18:41
Thinking of you and John
private consultation on Jan 2nd a very good idea
Barry
User
Posted 30 Dec 2018 at 22:21

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

User
Posted 31 Dec 2018 at 00:27
Love you loads xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Dec 2018 at 11:33

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

User
Posted 12 Jan 2019 at 14:13

That’s a good turnaround. Hope you get a positive outcome treatment wise.

Ido4

User
Posted 14 Jan 2019 at 21:37
Yaaaaaay ❤️❤️❤️❤️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2019 at 21:44

DM


Great news, lots of love and hugs.


Thanks Chris

User
Posted 14 Jan 2019 at 22:04
great news xxx
User
Posted 14 Jan 2019 at 22:26
Good news.xx
User
Posted 14 Jan 2019 at 22:37
Good news. My husband started it just before Christmas and so far so good. Hope it works for your husband.
User
Posted 15 Jan 2019 at 09:59

Hi, just picked up on this thread today. Id like to wish you best of luck with enzalutamide. my husband is just completing his first month of it. so far so good.


Susie

User
Posted 15 Jan 2019 at 22:41
Great news. Still on enzalutimide after 21 months so hope you get that return and more. Thinking of you both.
User
Posted 22 Jan 2019 at 00:48
Aaaaaaarrrrrggggghhh!

Hopefully tomorrow is a better day x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jan 2019 at 01:13
I'm with Lyn, Devonmaid. So frustrating for you, at a time when you least need it. I don't have a clue about how your prescription system works, but reading this makes me thank my lucky stars that our consultant or GP just writes them, and I just take them to our pharmacy and have them filled.

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.
User
Posted 27 Jan 2019 at 10:29

Well of course i sorted it all out and John started taking enza last tuesday. I’d say no change yet but its early days. We see the oncologist on Feb 4th for a review so next week i guess. on the plus side Indiana (Indy) John was born Friday lunchtime with me in attendance along with his  daddy. Can’t write much of a catch up due to the word processing issues on this site driving me nuts. Safe to say its a joyous weekend here though.


love Devonmaid 

User
Posted 27 Apr 2019 at 09:21

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!

User
Posted 27 Apr 2019 at 11:35
Oh Devonmaid

Don't know what to say but he is in the right place for now and hope it clears up quickly. I had wondered how you were doing so pleased to hear an update. My husband continues on Enzalutamide which has now been working for 5 months, longest anything has worked for so we keep hoping and only appointments every 2 months.
User
Posted 27 Apr 2019 at 16:00

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 

User
Posted 02 May 2019 at 10:12

Thanks everyone 


John is home, he’s very tired and sleepy. But he’s home. Happy Devonmaid.


 

User
Posted 22 Jun 2019 at 19:52

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


 


 

User
Posted 23 Jun 2019 at 10:47

Since you've mentioned it, it's worth pointing out that things like extra banister rails, grab handles, and other mobility aids can be fitted by Social Services in many cases where there's a need, in order to be able to stay living at home. These can make an enormous difference to the persons confidence (and safety). They can also fit an external keysafe so that emergency workers and health visitors/carers can gain entry, and the firebrigade will keep a record that the house has a restricted mobility person living there, and where in the house they are likely to be in the event that emergency evacuation is required.

User
Posted 02 Jul 2019 at 19:55
Sending wishes and thinking of you both x

If life gives you lemons , then make lemonade
User
Posted 02 Jul 2019 at 20:22
Thinking of you both - it breaks my heart to read of some of the hard times all our men have to go through. Tears are never far away but it hurts I know. Sending prayers.
User
Posted 02 Jul 2019 at 20:59
Thoughts are with you both, it is so hard to stay strong and hold it all together when all you want to do is break down and cry with them, I hope you get the emotional help that is so needed from the hospice nurse.


Big hugs to you

love Barbara xx
User
Posted 02 Jul 2019 at 22:18
Virtual (((((((((HUGS)))))))))) sent to both of you

Bri xx
User
Posted 03 Jul 2019 at 07:58

Thinking of you both, love Janet, x 

User
Posted 18 Jul 2019 at 09:06
Happy Anniversary Devonmaid. Just wanted to let you know that I am thinking of you both. There is nothing I can do or say that helps really, but did want you to know that I think of you often, and check in quite regularly to see how you are going. Watching the pain is so hard, isn't it. And the wait until appointments sometimes seems interminable.

Crossing fingers and toes that they come up with something to help.
User
Posted 18 Jul 2019 at 11:28

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


 

Ido4

User
Posted 22 Jul 2019 at 22:57
Heart wrenching to read, I have shed a few tears for you. What a warrior John has been; I hope that the final stage is comfortable rather than swift, if that is at all possible, and that you at least get the rest of the Summer.to create memories ... I guess even with a prediction of a swift parting, that doesn't mean immediately after the dose of enza runs out?

Being in Bradford would take your mind off most problems though :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Jul 2019 at 00:58

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

User
Posted 23 Jul 2019 at 01:40
Tears flowed here this morning for you and John, dear DM. Such a hard message to hear I know. I'm hoping they can keep the pain under good control for him and I know you have good hospice support which should ensure that. And I am wishing you both some time for fun, new memories, but also some time to reflect on your life together.

Keep blowing off steam here as much as you can. Sending virtual hugs across the waves xxx
User
Posted 23 Jul 2019 at 07:44
Hugs. At least treatment for another month. Just hope they can keep pain under control.
User
Posted 23 Jul 2019 at 08:21

Hi Devonmaid


So sorry to hear your news, even though expecting something like this it is still I big shock when told about it, I hope you can make some good memories and John can get some quality time with you all. Have a enjoyable time in Bradford. big hugs xxx


 


barbara

User
Posted 23 Jul 2019 at 13:59

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

User
Posted 23 Jul 2019 at 17:22

Thinking of you both.


Sending hugs,


 

Ido4

User
Posted 23 Jul 2019 at 19:44
So Sorry to read this news ,
None of us oldies will escape this
Hugs Barry
User
Posted 23 Jul 2019 at 23:25
(((((((HUGS))))))))

Please have a lovely summer together.

Bri xx
User
Posted 24 Jul 2019 at 08:18
Take care both.
Keep the Faith
Love and hugs.
J.
User
Posted 28 Jul 2019 at 23:03

Just a brief update from me. So we’ve now done our DNR form and have also said that John will no longer have any acute admissions to hospital or IV antibiotics. He is getting weaker by the day, although the steroids are helping with some energy, at least he isn’t asleep all day. I’d say the pain is increasing and spreading but isn’t yet unmanageable, I’m hoping it stays that way. I don’t think he will go out again very much as it’s too difficult now, though we have booked a family meal next Sunday, I hope we can make it. It’s been a rather traumatic week but my adult children (girls) have been magnificent, tearful but very helpful to us both. We’ve all been tearful of course, but somehow our military black humour often surfaces and it helps. I went off to Bradford for work and yet again it took seven hours to get home to Swindon, why oh why, it’s mean to take three and a half but I’ve yet to make it under seven by car. It was a good thing really, our daughter looked after her dad and they wept together and talked and laughed and I had a couple of days away from it all and it was strangely an altogether good thing. The weirdest thing is I have now worked seven straight days, fourteen hours a day the last five (from home), the longest stint I’ve worked since 2010. Why now I wonder? It’s been quite helpful to me really as it certainly stops me dwelling on it all. 


The hospice nurse has explained many things to me and I’m grateful for their care, the GP has said he will come out to visit us (shock!) so I know that we are in the final stage, even if I didn’t know already.


I'm rambling, so I will sign off now. Just wanted to let you all know we are all currently ok, if sad but as always (well nearly) wondering how lucky we have been to have for nearly nine years out of this bloody disease.


with love


Devonmaid xxx


 

User
Posted 29 Jul 2019 at 00:19

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


 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Aug 2019 at 01:15
The big thing about having a hospital bed is that they have all the gizmos for preventing bed sores etc - if you move your own bed downstairs, is there anyone from district nursing / community physiotherapy / occupational therapy that is going to be able to come and move him regularly or provide at least some gizmos? Obvs not thinking that you would need those things right now but if he rallies and fights off the infection?

I would be tempted to cancel the oncology appointment or ask for a phone consultation - J probably needs a journey somewhere like a hole in the head. Bunker down together and let everyone come to you, my lovely friend xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Aug 2019 at 20:50
I am so sorry to hear this news about your John
Lots of Love and best wishs
Barry
User
Posted 10 Aug 2019 at 21:56

I will echo Lyn's point about using a hospital bed.
I went through this with mum, and she finds it much easier to get in and out of, because it has motorised height control, not to mention motorised head and knee support, and also a waterproof anti-pressure sore mattress (not the air pump type - I believe it gets switched over to that if she has to spend much longer in bed).

User
Posted 11 Aug 2019 at 12:59

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

User
Posted 11 Aug 2019 at 13:26

DM


Great to hear things have improved a little. Urine issues can so often cause strange effects. Love and hugs to you all. Thanks Chris

User
Posted 11 Aug 2019 at 16:10

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


 


 

User
Posted 15 Aug 2019 at 00:09
I had a private ambulance to move mum - they were wonderful; kind and gentle. Nature sometimes has awesome powers - the brain's ability to recognise that the body is failing and control food intake in order to produce a natural pain blocker may be the reason he needs less morphine. The downside is that it may also be contributing to the confusion. Unfortunately, nature has no superpower that can make this better for you so just know that we are all thinking of you and wishing you strength, peace of mind, and a solid team around you.

Ramble away - we are here xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Aug 2019 at 00:13

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. 

User
Posted 15 Aug 2019 at 00:20

As Lyn says, DM, ramble away.  I hope that just getting some of it down in words helps - I know it always did with me.  But we are all different, and must cope with this in our own way.


As you can imagine, tears are threatening the viability of my keyboard as I type (but perhaps they can just join the chocolate crumbs).  The confusion is indeed so hard to watch, and deal with.  I'm glad you have good support,  the strength of your family must be a testament to both you and John.


Sending love - you are in my thoughts. 

User
Posted 15 Aug 2019 at 00:49
Dear Devon maid ,just to say that you are in my thoughts at this sad time .
Best wishes to you and your family.
Debby
User
Posted 15 Aug 2019 at 06:31

I am thinking of you all at this sad and scary time, I hope John manages to get more comfortable and pain free, big hugs to you all 


 


Barbara xxxxxxx

User
Posted 15 Aug 2019 at 06:50
Thinking of you all.
Keep the Faith
J. Xx
User
Posted 15 Aug 2019 at 07:21

DM


Very sad to read your post, thinking of you. Love and hugs.


Thanks Chris.

User
Posted 15 Aug 2019 at 08:04
Awfully sad to read. Love and strength as ever xx

If life gives you lemons , then make lemonade
User
Posted 15 Aug 2019 at 12:29

This has brought tears to my eyes. Thinking of you at this time...

User
Posted 15 Aug 2019 at 13:26
Thanks for the update Devonmaid sorry it's not good news.
User
Posted 15 Aug 2019 at 14:02

Love and hugs DM. So sorry to read this.

Ido4

User
Posted 15 Aug 2019 at 15:46

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


Xx

User
Posted 16 Aug 2019 at 20:40

Stay strong
Hugs 


Barry

User
Posted 16 Aug 2019 at 21:51

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.

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 21 Aug 2019 at 21:24
Hugs
User
Posted 21 Aug 2019 at 21:46

DM


Thinking of you, take care of yourself.


Thanks Chris

User
Posted 22 Aug 2019 at 08:39

sending you and your wonderful family big hugs xxxxxx



barbara xx
User
Posted 22 Aug 2019 at 09:04
The hospice put my dad on a syringe driver when he got to that stage, It really helped him, even when he couldn't speak we would communicate using hand squeezes.

Pretty sure it contributed to his eventual death but he was comfortable and not stressed and we were all there when he went.
User
Posted 22 Aug 2019 at 17:12
Thinking of you all DM

Take care

Bri xx
User
Posted 22 Aug 2019 at 17:33
Sadly I agree with some others. Having experienced it first hand , a syringe driver seems the best way and certainly ( I think , who knows ) what I would want to choose when it comes. Dying under terrible duress is awful for all parties. I send all the wishes and love I can xx

If life gives you lemons , then make lemonade
User
Posted 22 Aug 2019 at 19:03

Thinking of you all.

Ido4

User
Posted 22 Aug 2019 at 20:32
Sending prayers that you will have peace and that your support network will help you. Although it is desperately sad, he will be relieved that you do have your work life too. Sending mental hugs to you all.
User
Posted 25 Aug 2019 at 15:22
Sending best wishes at this very difficult time. Pleased to hear that the hospice will be looking at a full care package and hope it works well. Do try and take care of yourself as well.
User
Posted 01 Sep 2019 at 01:35
Wishing you a quiet family Sunday x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Sep 2019 at 06:12
Xxxxxxx
User
Posted 01 Sep 2019 at 07:49
Always thinking about you and John
XX
User
Posted 01 Sep 2019 at 17:36

DM


Love and big hugs.


Thanks Chris

User
Posted 01 Sep 2019 at 17:38
Thinking of you. Big hugs xx

If life gives you lemons , then make lemonade
User
Posted 02 Sep 2019 at 07:19

Dear Devonmaid


😊


“Family, friends, a good laugh and beautiful weather are the best cures.”


Regards,


Bose


 


 

User
Posted 04 Sep 2019 at 17:48
Virtual blanket on its way xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Sep 2019 at 17:55
You are a star Devonmaid.
User
Posted 04 Sep 2019 at 20:33
XXXXXXXXXXXXXXXXXXX
Barry
User
Posted 05 Sep 2019 at 08:47

Thinking of you all, xx

User
Posted 05 Sep 2019 at 15:00
((((((((((((Hugs))))))))))))

User
Posted 06 Sep 2019 at 19:31
Dear Devonmaid you are an angel and my heart and prayers go out to you both at such a difficult time xxxx💕
User
Posted 07 Sep 2019 at 08:11
So glad John out of pain now ,thinking of you all,Geoff
User
Posted 07 Sep 2019 at 08:28

DM


So pleased to hear things have settled down a little. Lots of hugs to you all.


Thanks Chris.

User
Posted 07 Sep 2019 at 12:05
Dear Allison so pleased John is now more comfortable and with his brother
Love Tom xxx 😍
User
Posted 11 Sep 2019 at 17:48

Like others have said Alison my love goes out to all of you , it reminds me so much of Trevor’s last few days .


i Remember how hard it was and how utterly exhausting watching but unable to do anything like John Trevor’s agitation and confusion  was awful and the deepest part of me was willing him to let go but also not wanting that finale moment .


i am thinking of you all xxx


BFN


Julie xxx

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Sep 2019 at 06:28

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

User
Posted 14 Sep 2019 at 07:17

Hello Devonmaid


So glad John is more peaceful now and that He got through yours and your Granddaughter's birthday. 


 


Thinking of you all


 


Barbara xxxx

User
Posted 14 Sep 2019 at 07:59

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


 

User
Posted 18 Sep 2019 at 19:36

Dear Allison,


Sending you the biggest, warmest hug ever.


I only wish I could do it in person.


 


It's been a while since I was last with you and John, and all the memories of our meetings are such happy ones, so knowing how terrible things are now has me choking back the tears.


 


You're both in our thoughts and prayers, we can't possibly understand what you're both going through now, and we can only imagine your pain.


 


All our love to you both,


 


George and Lynn

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 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 10 Oct 2019 at 15:38
Belated condolences Allison, John is now at rest after a momentous struggle.
You deserve great credit for your love, support and bravery, you are one in a million.

John x
User
Posted 14 Oct 2019 at 22:22

Allison


Thank you for your post , I just want to say thank you for the support you have given over the years. It took me a long time to grieve properly when my mum passed away. Lots of love and hugs and take care of yourself.


Thanks Chris

User
Posted 15 Oct 2019 at 00:46
I hope that if I am ever in the situation you have been in recently, I will be as brave and dignified as you. Lots of love to you, my dear friend x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Oct 2019 at 15:32

Allison, if you’d be kind enough to let me have John surname then I can add him to this years Absent Friends list at our annual All Souls Service next month, names read out and a candle lit for all.xx

User
Posted 17 Nov 2019 at 20:31

My heart has been heavy reading your posts and not knowing if I should respond or what to respond, as I am fairly new to this forum.  I know I will face what you face and we already agreed Arden wants to leave this earth in the comfort of his home.  We hope we are years from that decision but with spread now to organs we are realistic.  


With emotions all over the place I have finally come to acceptance, reading your posts over the last few months has been extremely helpful to me.  While you and your husband were going through this very challenging time you were willing to journal here on this site so that others can benefit from your wisdom.  I am truly grateful. 


Our faith is strong so we focus on eternity together one day.  I wish that for you and your precious John.  Yourbravery and resolution in the face of so much pain and uncertainty is honorable.  I prayed for you today and your family that you find peace, and your thoughts gradually turn from sadness to memories filled with joy.  


God bless, 


Judy in Saint Paul

Show Most Thanked Posts
User
Posted 18 Dec 2018 at 00:56
Hi Devonmaid

Hope John is able to get on another treatment and hope they get the itching sorted (poorly kidneys can cause this sort of itching) I am the same as you Tony is gleason 9 and I was pleased to get to 5 years and now its 12 years on. Tony is on his 3rd of 10 chemo now 4th one 28th dec. Hope John gets his pain sorted out and hopefully more options there seems to be so many more than when Tony was first diagnosed. good luck



love barbara xx
User
Posted 18 Dec 2018 at 08:01
Your men may be suffering with PC but they have certainly been blessed with their women!!
User
Posted 18 Dec 2018 at 08:49

Hi Allison


 


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

User
Posted 18 Dec 2018 at 09:04

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 

User
Posted 18 Dec 2018 at 13:49

DM


Sorry I don't know the answer to your question, but love and hugs to both of you.Take care.


Thanks Chris

User
Posted 18 Dec 2018 at 15:46

Hi JasperM


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


 


Love


Devonmaid xx

User
Posted 18 Dec 2018 at 16:16

Hi Devonmaid,
How strange Tony was 61 as well and didn't think he would make 70 and he did  and now hoping for another few years at least hopefully .


 


Love barbara x

Edited by member 18 Dec 2018 at 22:08  | Reason: Not specified

User
Posted 18 Dec 2018 at 18:55
Hi DM

Sorry to hear John is in pain and hope they can get this under control

The itching could be non liver related. Hasn’t he had this in the past?

Fingers crossed there is nothing untoward with his bloods and hope he gets his bone scan soon so his next line of treatment can begin. Hopefully still happy years ahead

Hope you can both have a lovely Christmas

Bri xx
User
Posted 18 Dec 2018 at 20:08

Hi Allison


I hope John gets sorted quickly


70 was always my aim DX Feb 2011 


70 in Jan


Merrry Xmas to you both xx

User
Posted 18 Dec 2018 at 21:43

I expect you didnt think i would pop up but yes i am your secret stalker 🤗 very silently watching behind the scenes .


i think what i would like to add is the obvious really , enjoy every day , enjoy every hour , enjoy every moment and especially enjoy xmas 


much love to all of you xxx


Juliexxx

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Dec 2018 at 04:18

Awake at 3.30, a dose of morphine, not for me, i had tea. popped in here and saw our lovely Julie has been here, Merry Christmas xxxx

User
Posted 21 Dec 2018 at 18:19
Sadly it's not true in every case but it seems to me that an increasing number of men these days are living well beyond the predicted time given by their oncologists. Perhaps this is largely due to the benefits of new treatments and protocols not taken fully into account because oncologists understandably base their predictions on past experience.
Barry
User
Posted 23 Dec 2018 at 20:02

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

User
Posted 23 Dec 2018 at 23:42

The most amazing thing is that John is still abi / enzo naive. It doesn't matter so much that the PSA didn't drop much; all the indicators are that the chemo will make the abi or enzo more efficient. I hope you can get the onco appointment brought forward though; he has already had more pain than anyone should have to endure.


I remember you first joining, and Barry & Yorkhull. Amazeballs that you are still here on the platform with your sandwiches, as Julie would say.


Lots of Christmas love to you and all the family xxx


 

Edited by member 23 Dec 2018 at 23:43  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Dec 2018 at 21:08

Hi lovelies


well we did get through Xmas and enjoyed it, just SIL’s birthday party to host on NYE to get through now, with a sickly daughter (hideous chest infection at 37 weeks pregnant, similarly a sickly four year old to boot) and then there is John. still heard not a thing from the specialist nurse or the hospice nurse about bringing the bone scan forward. meanwhile John continues to become weaker overall, his legs are weaker and his sensation of collapsing is now daily. i am beyond frustrated. So much for symptoms of SCC being considered a emergency. He doesn't have pins and needles and he has an SPC so no idea about bladder weakness of course. bowels are loose as opposed to the usual constipation. am i worried, you bet.


i am going to ask for a private consultation on Jan 2nd, i think its all i can do apart from calling an ambulance, which i don't feel comfortable  doing.    


sorry for the typos. the ipad and this site are not friendly and i don't have the energy to correct them anymore, despite being a paid up member of the grammar police.


Sorry for the miserable update, I'm rather at my wits end and fresh out of faith in the NHS.


love Devonmaid xxx


 

User
Posted 29 Dec 2018 at 22:01
Sending you hugs. Sorry John is having all those problems and hope he gets some help very soon.
User
Posted 29 Dec 2018 at 22:18
Sending you the comfort blanket, I've had it for a while and it sounds like you could do with it right now.
I've always felt a bit of a fraud each time I've taken oh to a&e or had the emergency Doctor out but in reality, every time it was the right place for him in that moment.
There is never a good time to make the call and I feel weekends in a&e are the worst (except for Mondays, everybody waits until Monday ), do you have an emergency Doctor on call system where you are?
I have a palliative care team number which prioritises oh for the doctors to come and see him. They then make the executive decision about whether to go to a&e or not. Do you have anything like this? If you are already in contact with your local hospice, they may have details of who to call to help you decide what to do.
Wishing you all the best.
Katie xx
User
Posted 29 Dec 2018 at 22:36

Saying a quiet little prayer to both devonmaid and kentish , tough times for you . Your posts have inspired guys like myself who are new to this disease


 Where there is life there is hope. Good luck and much love sent.


Chris.

Edited by member 29 Dec 2018 at 22:51  | Reason: Not specified

User
Posted 29 Dec 2018 at 22:58

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


 

User
Posted 30 Dec 2018 at 01:47
Oh love, I don't know what to say except if you are worried then A&E is the right thing to do. Not everyone has pins and needles.

Sending you lots of spirit xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Dec 2018 at 03:26

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


Steve x

User
Posted 30 Dec 2018 at 08:36
Big hugs and hope you manage to get things sorted.

barbara xxx
User
Posted 30 Dec 2018 at 18:35
Sending hugs and love to you all DM. Hoping things can be sorted so that John feels a bit better soon.
Ian

Ido4

User
Posted 30 Dec 2018 at 18:41
Thinking of you and John
private consultation on Jan 2nd a very good idea
Barry
User
Posted 30 Dec 2018 at 22:21

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

User
Posted 31 Dec 2018 at 00:27
Love you loads xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Dec 2018 at 11:33

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

User
Posted 01 Jan 2019 at 21:14

Well the party went well, though John spent all but ten minutes of it in bed. i did manage to speak to the specialist nursing team (well one person was manning the phones) and it turns out that they haven’t actually ordered the bone scan. shortly afterwards the hospice nurse rang (mid celebrations) and i had a few tears down the phone to her. hopefully we will now get the bone scan sorted. John has rather worryingly lost his apetite and all things considered i need them to move him onto new treatment ASAP. you only need to look at him to know what's happening.  So, thank goodness the world returns to normal tomorrow so i am hoping for something to happen quickly now. we have also been put on the list for the hospice doctors so can now call them for help if needed.


Devonmaid xxxx 

User
Posted 02 Jan 2019 at 18:53

So finally got called back and the bone scan is on the 15th, I'm not ecstatic as that’s hardly closer than it would have been anyway. If anything hapoens to my man as a result of their incompetence they’d better watch out.


 


devonmaid  

User
Posted 08 Jan 2019 at 00:00

Oh DM ,


i dont know why as i haven’t looked in on here for such a long time but felt the  need to check on you and John .


im so glad the comfort blanket i started is still doing the rounds , but i can feel your despair at not  being  heard  i can so remeber the frustration of not being listened to when you are at desperation level .


i think of you both often and am sending love and hugs and thensome .


and what the **** is happening with the forum typing situation its like being stuck in a wind tunnel 😫


 


BFN


Julie X

Edited by moderator 08 Jan 2019 at 00:35  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Jan 2019 at 07:27
Devonmaid, sorry that you now have more delays. Fingers crossed that the scans lead to some new plan.

Julie, I am not having any typing problems or forum glitches????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Jan 2019 at 21:22

Well


i spoke to the specialist nurse yesterday and today and she told me that John may not get any further treatment due to his current condition. The appointment isn't being brought forward from 18th Feb either. scan is next week so all i can do at the moment is to try to feed him up, get him moving and after the results come in, get a private appointment and hope for the best.


i could say more, but typing this has taken ages due to whatever glitch affects the i pad and t his site a nd i give up!


 


Devonmaid 

User
Posted 10 Jan 2019 at 21:43

DM


That's not great news, thinking of you both.


Not having any issues with typing on an android phone, I do sometimes type my replies in Gmail then cut and paste the text into the reply on here.


Thanks Chris

User
Posted 10 Jan 2019 at 22:31
Well let's hope that the CNS is an idiot or a newbie. I don't understand why s/he says they wouldn't try abi or enza - his response to the Stilboestrol was really good and I think he is still LH / GnRH naive .... surely it would be worth a shot.

I take it you are going to try for a private appointment before the 18th rather than after?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Jan 2019 at 07:06
So sorry about what is going on, I hope the scan is ok and second what Lyn says about the abi or enza.

kind regards barbara
User
Posted 11 Jan 2019 at 07:45

Yes Lyn


will wait for the scan results and see what happens from that. I’m utterly disillusioned and shocked at the moment. If there is nothing more to be done then i can accept that but not like this . the typing of this has been painful.

User
Posted 11 Jan 2019 at 16:38

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

User
Posted 12 Jan 2019 at 14:13

That’s a good turnaround. Hope you get a positive outcome treatment wise.

Ido4

User
Posted 14 Jan 2019 at 20:08

Well folks good news, John starts Enzalutimide on Monday. His PSA was 99, ALP and various other blood markers were elevated but onco was pleased that he was just about well enough to be given the drug. What a day, massively relieved though we have been given loads of warnings about blood pressure, infections and it not working but he is getting it. He said he thought that he had been suffering after effects of chemo and disease progression and now was the right time to start a new treatment. He did say that he will need careful monitoring and three months will be enough to know if its working. Failing that its a low dose steroid and entry on to a trial.


a relieved wife today! 


We live to fight another day.


Devonmaid

User
Posted 14 Jan 2019 at 21:37
Yaaaaaay ❤️❤️❤️❤️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2019 at 21:44

DM


Great news, lots of love and hugs.


Thanks Chris

User
Posted 14 Jan 2019 at 22:04
great news xxx
User
Posted 14 Jan 2019 at 22:26
Good news.xx
User
Posted 14 Jan 2019 at 22:37
Good news. My husband started it just before Christmas and so far so good. Hope it works for your husband.
User
Posted 15 Jan 2019 at 09:59

Hi, just picked up on this thread today. Id like to wish you best of luck with enzalutamide. my husband is just completing his first month of it. so far so good.


Susie

User
Posted 15 Jan 2019 at 22:41
Great news. Still on enzalutimide after 21 months so hope you get that return and more. Thinking of you both.
User
Posted 16 Jan 2019 at 06:53
Great news and fingers crossed

Bri xx
User
Posted 16 Jan 2019 at 08:17

Just wanted to mention a blood marker i hadn’t heard of before we started chemo called LDH (lactase dehydrogenase i think), a measure of tissue and muscle damage and this was particularly high. ALP had raised to 123 from 68 in five weeks and blood volume decreased again. I just hadnt seen mentione of LDH before on here (may have missed it).


I feel much better and am sleeping at last, full body bone scan yesterday, so we will have the full picture soon.


Thank you all for your support.


love Devonmaid xxx

User
Posted 16 Jan 2019 at 10:52

Hi Devonmaid, 


Just wanted to wish you both all the luck in the world with this next stage of treatment and hope that it really works well for him.


Steve x 

 
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