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Next Treatment Please

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

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
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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