Next Treatment Please

User

Posted 29 Jul 2019 at 15:41

I am thinking about you all - what an amazing family you are xxx

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

User

Posted 29 Jul 2019 at 20:33

Thinking about you all. Love and hugs.

Ido4

User

Posted 29 Jul 2019 at 21:19

Always thinking of you both
Barry xxx

User

Posted 29 Jul 2019 at 21:29

Sending love and strength to you all as a family. Xx

User

Posted 31 Jul 2019 at 23:09

Thinking about you Devonmaid and hoping John's pain is being controlled as much as possible.

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

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 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

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.

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