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Ever Decreasing Circles part three

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User
Posted 04 Feb 2016 at 18:48

Nowhere but here could someone say "I have loads of drugs and can travel" and no-one bats an eyelid.

Paul, are you taking the painkillers systematically or holding on / delaying in a "perhaps I can manage another half an hour without" approach?

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

User
Posted 04 Feb 2016 at 18:48
Hi Paul

.... I know I live quite close by and in truth just one text message and I would be there to help any way I could. Even if it is just making cuppas and tasty food or running errands. Never ever be stuck without help I would be mortified at the very thought.

You may be single but you are not alone.

Piglet has a really valid point, getting medication to a preventative level is a bit trial and error and in the time it takes to establish the best dose and frequency use the oramorph. I think I mentioned to you once before it does have a shelf life once opened so if you have not taken it for a while get a new supply.

Casodex cessationn can cause a withdrawal bump or tumour flare, hopefully revised timescales for treatment plans will take care of that and quickly.

Si reckons Julie would take days on the ride on to get to you, he hasn't seen her turbo charged broomstick (she borrowed it from me!!) I am intrigued to see what Lyn has up her sleeve but suspect that HD of John's might feature?!

all my very best wishes and a big friend hug

xxx

Mo

User
Posted 04 Feb 2016 at 19:11
Sorry you are not feeling the best Paul, hope that quacks can get you up and running ( sort of!) soon. Take care, Kev

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 04 Feb 2016 at 19:30

Sorry to hear you are going through some tribulations Paul. On the bright side, England did well against South Africa.

I hope you have a sense of humour mate? Will buy you a beer, if you are drinking?

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 04 Feb 2016 at 20:38
So sorry to read about the pain Paul, I'm in full agreement with the others about ensuring you take the painkillers regularly, this is my biggest battle with John. Plenty of help and support here Paul, I hate to think of you being lonely Nd in pain, makes me feel sad for you.im glad to know that your son is there for you.

Lots of love

Allison xx

User
Posted 04 Feb 2016 at 20:51

Thanks for all the kind thoughts. The flare happened quite quickly so though I was taking medicine regularly it was not strong enough. I have also used the oramorph sparingly but it was suggested by the nurse I should use it more. GP was really helpful and sorted a prescription for tramadol. Said I should look it for hallucinations and the image of Julie charging up the country to see me as probably one such hallucination. So getting my head around pain management which I do understand but this came on so quickly. Maybe the flare will calm down too.

I know I am not alone with you wonderful lot but just felt a little vulnerable this morning as the pain was all over the place but is settling a bit now.

User
Posted 04 Feb 2016 at 21:11
😷💉🚜👼💃leaving in 20 minutes be with you sometime on Tuesday.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Feb 2016 at 21:13
Hi Paul

Aren't you the lucky man having all these lovely ladies on here concerned about you! What a lovely group of kind people.

I do hope tramadol and increased oramorph helps with your pain and enables you to get about a bit better.

Lesley x

User
Posted 05 Feb 2016 at 12:17

Good day to you Paul - has the pain settled at all?

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

User
Posted 05 Feb 2016 at 17:24

Beginning to get it under control. Tramadol certainly has had a positive effect. All these painkillers make me a little drowsy but otherwise no other side effects. Went to Halifax today which was a good test of how I felt. The worst pain is my right pubic bone which was subject to RT relief last July. This has flared again and just sitting is a problem, and walking sets it off too. So this hurt quite a bit at lunch but I can avoid it when I am at home where my own chair does not set it off.

But I hope I have some control now and that the flare may also begin to recede. Feel a bit drained but less frantic than yesterday where I was struggling to do anything. Thanks for your kind words of support, invaluable to how I feel!

User
Posted 05 Feb 2016 at 18:02

It may not be the PCa Paul - lots of people need painkillers before they visit Halifax!

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

User
Posted 05 Feb 2016 at 18:30
Especially Huddersfield folk.
User
Posted 06 Feb 2016 at 07:52

I hope the pain has receded Paul...lots of kind offers of help as always. But you have my mobile number and I am literally down the road should you ever need anything or anyone

Take care

Bri

User
Posted 06 Feb 2016 at 08:54
Hi Paul,

Hope things are improving for you now, sorting out the right combination of drugs always seems to be a challenge. I suppose that is because we are all unique individuals, the way our bodies react to illnesses such as cancer prove that point.

Please take advantage of the help and support offered, it shows how much we all care about you.

Have a good weekend and don't be surprised if there's a queue of women outside your door at some point.

Best Wishes

Steve

User
Posted 09 Feb 2016 at 19:15

Just a quick update. Saw my oncologist today who fitted me into a busy appointment list, quite impressed with that. He thinks I am experiencing a form of tumour flare as a result of stopping the bicultimide and that he believes it will settle down, clinically my signs are good from the CT Scan etc so there is no reason for more permanent difficulties. So he said I could start enzalutimide immediately, or wait to see if PSA responds positively and if I went for the latter return if there was any continued difficulties.

As I understand what he is trying to do with the waiting to see if PSA drops which could mean a longer period before I start enzo I have decided for now to go down that route. The idea of a flare fits as this came on all of a sudden and is now in control with pain killers and if it does not abate he is happy for me to go back. In fact I was impressed with his willingness to see me. He also will give me radio therapy if the pubic bone problem continues as this is this most painful of the areas.

So not back to 100% by any means but resting up this week so hopefully by the weekend I will begin to get off the strong pain killers. Let,s hope so.

Nurses and my onco been really supportive, even GP so happy with that too.

User
Posted 09 Feb 2016 at 19:31

I'm glad that you have a supportive onco and nurses. Rest up and hopefully symptoms will settle down a little for you. My dad just started arb, hoping its successful.

User
Posted 09 Feb 2016 at 19:43

Good that you are being given proper support Paul. Take it easy of you can.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 09 Feb 2016 at 19:52

Hi Paul,

Take it easy.  Pleased to hear you're getting good treatment and a little happier about things.

All the Best,

Steve

User
Posted 09 Feb 2016 at 20:13
Paul

Sounds like good news,look after yourself and take care.

Thanks Chris

User
Posted 09 Feb 2016 at 20:14
Paul

sounds like a good supportive hospital and GP , a rational explanation for the sudden pain and so if it is under control sticking to a later switch to enza seems sensible.

Now sit back and enjoy the cricket, rugby and footie

very best wishes

xxx

Mo

 
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