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User

Posted 27 Apr 2019 at 14:07

All my wishes to you both x

If life gives you lemons , then make lemonade

User

Posted 27 Apr 2019 at 14:33

Sending best wishes DM.

Ido4

User

Posted 27 Apr 2019 at 15:00

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 27 Apr 2019 at 16:58

I Hope everything goes ok and he can get back on he Enzalutimide, thank goodness for the paramedics.

regards Barbara. x

User

Posted 27 Apr 2019 at 17:18

Sending Hugs XX

User

Posted 27 Apr 2019 at 17:51

Devonmaid,

I am so sorry to hear about your husband. A very worrying time for you all. I'm sure that he will soon start to feel a little better with the wonderful support that he is getting.

I know a little of how you must be feeling as my husband was also blue lighted to A & E with suspected sepsis earlier this week (luckily it wasn't sepsis!). He was taken straight into resus and I must say that the staff at the hospital and the paramedics were amazing. He is in the middle of chemo at the moment and had so far coped well with it along with daily steroids and 3 monthly hormone injections. We had just got our heads around the diagnosis and we were getting along quite nicely with our new 'normal'. However, this has put us back and we feel as though we are back at the beginning with it all again emotionally. ☹️. Chemo hopefully finishes at the end of May and then they are giving him a month's break before radiotherapy starts. I'm sure that we will get back on track again soon.

I send my best wishes to you all and I thank you for the positivity that the likes of you and Kentish have provided in these forums.

Take care x

User

Posted 27 Apr 2019 at 19:46

How frightening for all of you, especially your daughter. I hope he is home soon x

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

User

Posted 27 Apr 2019 at 21:02

So sorry to hear. Your are amazing at supporting all and I hope your voice gets heard. Cx

User

Posted 27 Apr 2019 at 22:07

Dear Devonmaid ,sending best wishes .

Debby x

User

Posted 28 Apr 2019 at 07:58

Dear Devonmaid, so sorry to read this update. So frightening for you all. I'm glad that the sepsis was recognised and acted upon. And I do hope you get the outcome of the enza continuing on Monday. I know they said there was an increased risk of UTIs on Abbi too, and H had an SPC that heightened that risk too. He did have a couple of UTIs, but thankfully it didn't go to Sepsis.

I have been thinking of you often, and wondering how you were getting on. And yes, we do know how worriesome the waiting for the decisions is. Will be thinking of you.

User

Posted 28 Apr 2019 at 08:00

Just thinking of you all and sending my best wishes, x

User

Posted 30 Apr 2019 at 08:24

Dear DM,

Sending best wishes for a speedy recovery from the infection. Xx

User

Posted 02 May 2019 at 09:12

Thanks everyone

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

User

Posted 02 May 2019 at 10:35

Pleased to hear this and hope things continue to improve.

User

Posted 02 May 2019 at 11:14

Great news! Glad John is back at home with you.

User

Posted 02 May 2019 at 13:37

That's good news DM.

Ido4

User

Posted 02 May 2019 at 15:35

So happy to hear he is home. Take care and hopefully all will be well.

😸

Edited by member 02 May 2019 at 15:36 | Reason: Not specified

User

Posted 03 May 2019 at 04:56

So pleased for you both that John is home. xxx

User

Posted 03 May 2019 at 06:23

Good to hear is is home.

Thanks Chris

User

Posted 21 Jun 2019 at 08:29

Hi everyone

A little update from me, John has been suffering pretty severe pain down his right side this last week or so, given that he is already on a Fentanyl patch (25ml), it must be pretty bad. It has led us to believe that his main tumour in his right hip is growing again and that the Enzalutimide is now failing after five months. We are up in front of the oncologist on Monday so will discuss with them but in the meantime I will be talking to the hospice nurse today about whether it’s better to increase the patch dose rather than take morphine due to severe constipation issues (resulting from RT to the prostate a couple of years ago) and the ongoing impact on his supra pubic catheter (the pressure makes him more prone to infections).

We were told that this is the last treatment bar steroids so are trying to face up to that but also trying not to jump the gun. Frankly, we’ve been around this disease long enough to know that symptoms are everything though.

Wish us luck.

love Devonmaid xxx

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