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User

Posted 11 Aug 2019 at 13:26

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 11 Aug 2019 at 16:41

Very pleased to hear that DM.

Ido4

User

Posted 12 Aug 2019 at 06:17

So pleased for you both
Barryxx

User

Posted 12 Aug 2019 at 09:41

sorry to hear about john,he always answered my problems to help me,i know its sad but try and be brave.x

User

Posted 12 Aug 2019 at 19:09

So pleased to read this DM ,

These men certainly give us a roller coaster ride and I remember oh so well the stress and drama .

have to agree with Lynn on the bed with gizmos , you can’t beat a good gizmo in times of stress 😘

BFN Julie

XXX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Aug 2019 at 23:40

Another update from me, John is still with me but is still incredibly poorly, still having some hallucinations and confusion though the infection looks a little better. We now have a commode and a bed and hoist on the way as he can no longer walk. He fell yesterday and really hurt himself and now cannot get up as the knees won’t hold him. We are working with the hospice to get him downstairs once the bed is in on Friday. Looks like we have to get a private ambulance and pay them to bring him down safely. I don’t really care as long as he is safe. He cried to me last night, saying that it had all happened so quickly he was very frightened. We broke our hearts together and I cuddled him to sleep. I’m so glad my brother in law (and some friends) were here when he collapsed on the floor, I could not have got him up again. My bil was been amazing, keeping John company and moving all the stuff out of the dining room to make way for the equipment. I don’t know if I told you but he has an ugly lump which is at the top of his tibia, you can see it. We have cancelled our onco appointment for tomorrow as it’s impossible to get him there. I don’t know if he will survive for long as he is declining day over day and now he is bed bound I think it can only get worse. The confusion is so awful, I find it hard to cope with but try not to make a point of it all. He knows he’s confused though. Sorry for the ramble but you know I can let off some steam here. I’m so sad, I think this is worse than death. The suffering isn’t all about pain, being frightened to go to sleep is horrible. The pain is ok at the moment, morphine has been reduced a bit as he doesn’t often ask for it as much at the moment. I hope this isn’t too painful to read, I know when I used to read the stories here I’d sometimes be stuck for words but that isn’t why I’ve posted, so don’t worry. I thought you’d like to know what’s going on as I always did when it was our lovely men. I don’t say that to exclude those we share with here whose husbands are still here, I’m so glad about that, it makes me very happy actually. I wouldn’t wish this on anyone.

With love

Devonmaid xxxx

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

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

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.

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 21:18

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 21 Aug 2019 at 21:24

Hugs

User

Posted 21 Aug 2019 at 21:46

Thinking of you, take care of yourself.

Thanks Chris

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 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

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 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 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 31 Aug 2019 at 23:34

Just an update from me, fentynl patch has had to be raised to 100 mg due to severe pain in the legs and it seems to have worked. Consequences are that John is very sleepy and slightly confused but should pass in a couple of days. Other than the increased pain again, not a lot has changed although I can see that I need to beware of pressure sores as I can see some very angry looking skin. Life is very difficult for us all but we continue to try to enjoy the small things and are very grateful to the NHS staff helping us. District nurses come round randomly, luckily a nice lady came on Friday and changed John’s supra pubic catheter as he had an infection, that’s was good. The GP has popped round twice and it’s nice to see him out of his environment, he played with our granddaughter and she was intrigued by him but was chatting away like he was an old friend, mainly about unicorns and what colour they are (he has a six year old daughter). It made us all smile. I’m coping alright at the moment but I am very much a carer now, roles have changed in our house for sure. Steroids are going to be stopped soon as they make you more vulnerable to infection, then we will only have the zoladex in the tool box. I will update again when thing change again, which they will.

lots of love

Devonmaid xxx

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

User

Posted 01 Sep 2019 at 17:36

Love and big hugs.

Thanks Chris

User

Posted 01 Sep 2019 at 17:38

Thinking of you. Big hugs xx

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 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 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 17:55

You are a star Devonmaid.

User

Posted 04 Sep 2019 at 20:33

XXXXXXXXXXXXXXXXXXX

Barry

User

Posted 04 Sep 2019 at 21:08

Thinking of you. X

User

Posted 05 Sep 2019 at 08:47

Thinking of you all, xx

User

Posted 05 Sep 2019 at 15:00

((((((((((((Hugs))))))))))))

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 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💕

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