Next Treatment Please

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

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

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