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Ever Decreasing Circles part three

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User

Posted 11 Aug 2018 at 14:08

Thanks Ian. It is such a variety of potential symptoms that you can fail to link it at first as I did with the recent anxiety. But once I did it helped in tackling it. Never an easy decision to retire I hated it as I loved my work but having worked on for three years after diagnosis I began to realise through my close colleagues that it was unsustainable. I did take on a new pro bono role which was s good transition but now with the CRF much worse I am stopping this. I have learnt to understand my body and make decisions which preserve what energy I have.

User

Posted 11 Aug 2018 at 21:56

Hi Paul

Glad to read that the transfusion has made a positive difference to you, i hope that continues for some time.

i read your blog on tiredness and like Ian, feel that your words perfectly describe how this disease and drugs can affect you. To date I am still lucky that physically I seem to be able to do stuff but the mental side I definitely have similar to you. I am not sure if you have ever needed to but personally I have struggled to make others understand what it’s like, in particular my colleagues ( and HR team ) at work. I may well show them what you have written if that’s ok? Any other tips in this regard most welcome.

I will keep reading what you write and look forward to many many more to come.

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 11 Aug 2018 at 22:16

Happy for you to share of course. Just one point the blog was about fatigue not tiredness. Tiredness is a subset of fatigue but this term allows for discussion of a range of issues. Thanks for reading.

User

Posted 12 Aug 2018 at 03:23

Superb writing as usual. Considering the number of queries on here about fatigue and the interest that PCUK has shown in support programmes etc, I think you should copy and paste the blog into a new thread here and / or that PCUK should consider using it as a resource.

I would also be interested in whether it resonates with Devonmaid's John.

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

User

Posted 12 Aug 2018 at 07:57

Hi Paul

Just read your Blog really good, lots of things in there that I can relate too

Glad the transfusion has done its job

Stay healthy

Barry

User

Posted 12 Aug 2018 at 09:32

Kev, I have also struggled to get some of my work colleagues to understand the fatigue. My boss has openly said to me “I can’t imagine what it’s like for you so I won’t attempt to!”

Paul is absolutely right to point out the difference between fatigue and tiredness. Tiredness will abate with rest.

I have decided to take the advice given to me from occupational health and my doctors and retire early.

Getting up at 5:40 a.m. and not getting home till after 6 p.m. was leaving me exhausted so I will be retiring 26/9/18.

I hope Paul‘s blog helps you get some of the message about understanding fatigue across.

Best wishes,

Ian

Ido4

User

Posted 12 Aug 2018 at 10:17

HI Paul

I was very pleased to read that the blood transfusion has given you a well deserved boost and I am sure that you will be a tad relieved that we are benefitting from cooler weather now.

I have read your blog which has helped me to a better understanding of what everyone suffering with fatigue is going through. I only get a bit tired but I guess that having been retired for 5 years and only having started treatment 3 years ago I didn't have work pressures to contend with as well.

Thank you for sharing your experience and I doff my hat in the direction of all of our members who are experiencing the symptoms of fatigue that you have described.

Kind regards

Kevan

User

Posted 12 Aug 2018 at 12:53

Ulsterman, I have tried to respond to your private message but it’s full. Can you create some space?

User

Posted 12 Aug 2018 at 14:14

Hi Ian, work are suggesting I speak to occ health too but I need to work still at 53 with kids in education still I need the income. Not all outcomes of such a meeting would work for me so hoping to delay such a discussion as to date the flexibility given me has been perfect. Glad You feel that the Right outcome for you has happened though.

I will use Paul’s blog though as support to continue with the current arrangement as physically I can do big challenges that help me mentally cope with the other stuff and mental fatigue.

have a Great sunday

kev

Edited by member 12 Aug 2018 at 20:29 | Reason: Not specified

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 13 Aug 2018 at 11:47

Thank you for sharing this , hubby is struggling with fatigue - he loved to walk and cycle -onco advised that because of lack of hormones you have to try harder !

User

Posted 13 Aug 2018 at 11:50

I have many physical limitations around mobility I did not have six years ago but you can make sense of that. Fatigue is more subtle and multi-dimensional and I hope the blog illustrates this.

User

Posted 05 Sep 2018 at 12:45

Ok latest 4 weekly catch up a bit disturbing. Suddenly PSA has jumped from 12 to 19.26. It is either the start of rejection of enzalutimide or an anomaly. Onco checking every avenue. He thinks that my clinical signs remain good so we continue for four weeks. But CT Scan to be done to check there is no disease progression in soft tissues. Also urology tomorrow to see how far the problems there might be interfering with PSA. Unsettling times. Felt a bit down last night but I keep going as always.

User

Posted 05 Sep 2018 at 13:34

Hi Paul,

Good to hear you are still keeping going. Sorry to read about that jump though. Hope it pans out okay?

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 05 Sep 2018 at 15:53

Sorry to read about the jump in PSA Paul. I sincerely hope it’s a blip rather than a trend.

Good to see you co to fight.

Best wishes,

Ian

Ido4

User

Posted 05 Sep 2018 at 17:53

Eeeeek - let's focus on the possibility that it is an anomaly

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

User

Posted 05 Sep 2018 at 18:15

Fingers crossed for you Paul.

We can't control the winds - but we can adjust our sails

User

Posted 05 Sep 2018 at 21:36

Paul

A bit tish, hope it is a blip,keep going mate.

Thanks Chris

User

Posted 05 Sep 2018 at 21:54

Fingers crossed, mate!

User

Posted 06 Sep 2018 at 18:28

Ok urology report. Not too much to stay. No infection. Retention smallish (119 ml). Immediate strategy, self-catherisation at night after lower drink intake post 6 pm. Monitor intake and expel of urine over three days. Return in a few weeks to see if this has made a difference. Possible to add a tablet which increases bladder control. Will consider this after above has been tried. If both fail last resort find ways to keep dry at night through a sheath. They want to see if they can stop it first. So pretty thorough and let’s hope I get some improvement.

The joy of self-catherisation again but only once a day.

User

Posted 06 Sep 2018 at 19:02

Paul - sorry to see the trials you're going through. Hope things settle down.

Ulsterman

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