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Ever Decreasing Circles part three

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User
Posted 17 Apr 2018 at 21:56

Well said, Lyn. Was attempting to think of some encouraging words for Paul, but yours really hit the mark.

User
Posted 18 Apr 2018 at 21:04
Hi Paul, sorry to read that PSA rising, hope nothing else bad comes out from tests and rise slows. 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 18 Apr 2018 at 21:29

Best wishes Paul and here's hoping for a Splendiferous Summer !!

We can't control the winds - but we can adjust our sails
User
Posted 15 May 2018 at 14:29

So four weeks on and we have another check up. So the results are in, sort of....the good news is my PSA has stabilised, slightly down at 13.69 so same treatment continues which is excellent. Bone scan reported some progression but oncologist doubts this and has referred it for further analysis. It did not look much different to me. CT scan not been reported back so he is chasing it but hopeful that this will show no change. So not clear cut but present regime retained which was main purpose. So am content.

I have not been feeling well of late but I think these are ancillary problems and the longer enzalutimide is working the better for me as it avoids the next steps. I want to enjoy the weather but still lacking energy so hope I can sort these issues out a bit and make the most of this respite, at least for four weeks anyway.

User
Posted 15 May 2018 at 15:15
Good to see your results are more or less where you hoped they would be and to read that you are content with those results.

Sorry that you are not feeling so good but hoping that things will perk up so that you can get some enjoyment from this spell of fine weather. It has certainly been hot down here in Wiltshire but being a southerner it's not possible for me to function properly in the cold.

All the best

Kevan

User
Posted 15 May 2018 at 17:58
Good to hear your PSA has stayed roughly the same and you can continue on current treatment Paul.

As Kevan has said I also hope you start to feel a bit better soon and are able to enjoy any decent weather.

Ian

Ido4

User
Posted 15 May 2018 at 21:23

Small victories but victories nonetheless. I hope you feel more zippy soon x

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

User
Posted 16 May 2018 at 10:10

Well more good news today on two fronts. The hospital phoned this morning. The good news is I was reviewed at the MDT last night and the scans show my disease to be stable. No soft tissue spread and bony mets stable. So that is a good start to the day.

Secondly I seem to have overcome my gastro problems feeling a lot better yesterday and today so hope this continues forward.

Diabetes consultant today so just that one to sort and the summer starts here.

User
Posted 16 May 2018 at 11:27
That’s good news Paul. Out and about from tomorrow then?

Ian

Ido4

User
Posted 17 May 2018 at 18:45

Good news on a couple of fronts. Long may it continue ...

User
Posted 17 May 2018 at 18:59
Good news Paul

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 22 May 2018 at 18:38
Good news Paul .

BFN Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jun 2018 at 18:00
So 4 weeks comes round quickly but PSA stuck around 14, ALP normal and all other markers good I get another four weeks unchanged treatment. I’ll settle for that. Still getting very tired at times but I guess I can live with that given I stay on enzalutimide for longer.
User
Posted 12 Jun 2018 at 18:35

Hi Paul,

milk that Enzo for as long as possible .

always thinking of you and Si .

xx

BFN Julie x

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jun 2018 at 18:37
Thats a good result Paul

Keep it going

User
Posted 15 Jun 2018 at 17:59
Go well brother

Bazza

User
Posted 15 Jun 2018 at 20:31
Really pleased to see it is holding steady x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jun 2018 at 09:59
It is good news, no doubt but 4 weekly appointments does mean you are never far from a check-up. I wish I felt better in myself too the impact of various drugs making daily living a little challenging.
User
Posted 10 Jul 2018 at 15:58

So another four weeks gone. Some good news some less so. Firstly the cancer appears stable, PSA down a little to 12.8 and everything ok to continue. But haemoglobin levels (low) and lots of proteins in my kidneys and combined with how I have been feeling it calls for kidney investigation. So referral to renal unit. Also checking out whether I am retaining urine again so ultrasound and the potential return of self-catherisation. Changed my anti-sickness drug because current one, domperidone has contra-indications re  heart problems so all change there. So mixed bag really but the core results re cancer still good so can’t be bad.

Edited by member 12 Jul 2018 at 13:35  | Reason: Not specified

User
Posted 10 Jul 2018 at 23:09

You are just one of the Guys that I like to keep my eye on 😉 the other starts with S and ends in I 

Good news Paul on the  psa .

i am keeping fingers crossed that the bladder issues are sorted soon 

small steps lead to bigger steps and you have certainly sorted the small steps .

loads of love as always 

xxx

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Jul 2018 at 23:38
Thanks Julie, it’s good to hear from you and here’s hoping I can keep going for a while. Don’t get many comments now on here I guess it’s just the changing nature of the forum.
User
Posted 12 Jul 2018 at 07:03

HI Paul

Certainly a mixed bag of results for you but good news that the PSA has come down a little.

Let's hope that the appointment for the renal unit comes through soon and that you get some helpful results from that.

It was lovely to meet you at the Mill the other week as I have followed your posts since I joined the Forum and admire the way that despite everything that is thrown at you you crack on dealing with it all and sharing your experience.

All the very best and keep us up to speed with your progress.

Kevan 

 

User
Posted 12 Jul 2018 at 08:33
Keeping my fingers crossed for you Paul
We can't control the winds - but we can adjust our sails
User
Posted 12 Jul 2018 at 11:13

Hi Paul, I follow your story closely. As Kevin has said good news on the PSA front but a few other issues to sort.

I hope you have been able to enjoy some of the nice weather and have been tearing around on your transport!

All the best, Ian.

Ido4

User
Posted 15 Jul 2018 at 18:55
Any news on how soon you can be seen at the renal unit, Paul?

On the bright side, I take it you haven’t had any cricket rained off while I was away?

Love as always xxx

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

User
Posted 15 Jul 2018 at 19:01
Sorry I’ve not replied Paul. At a loss as what to say ( for once ) lol. I’m glad your psa stays stable and your QOL is manageable. As you say the forum moves on and some of us disappear. I’ve been on here 3 1/2 yrs now yet it seems like yesterday. Thank god for Lyn and Johsan and others that are always there for people. I back off a bit as although I look daily it is a source of impending doom for me. I wish you well x
User
Posted 15 Jul 2018 at 21:05

... & thank you also to Ian, Kevin & countless others who share this awful illness but who give us strength and a positiveness to see it through with fortitude. Thank you all ... 

 

User
Posted 16 Jul 2018 at 14:42
Thanks guys. No call to the renal unit yet but I don’t think it was seen as urgent more a precaution. I’ll let you know, also due an ultrasound to check if retaining urine again, could mean a return to self-catherisation, that would be fun. For now I just keep going.
User
Posted 17 Jul 2018 at 18:18

Just seen your post Paul

Keep up the good work , always on the lookout for you

 

Barry

User
Posted 07 Aug 2018 at 18:14
So it’s appointment time again with another long day at the hospital. But some good news and maybe some actions which will improve things. Good news is cancer remains in good control, PSA was 12.76 and so treatment continues. Nothing to worry about with the kidneys. I need to see urologist to check nighttime problems. We then discussed how I have felt which has not been good, high level of fatigue and also some anxiety and she thinks part of this could be linked to low haemaglobin, down again to 84. They thought a blood transfusion would help. Decided to go for it, happening tomorrow. All in all ok just six hours of blood transfusion tomorrow. i could be a new man by then but it will be a long day. After a difficult few weeks feel like there are plans in place.
User
Posted 07 Aug 2018 at 19:10

Thank you for the update Yorkhull I always follow your updates. I wish you all the best for tomorrow and will be thinking of you.

User
Posted 07 Aug 2018 at 19:41
Good news Paul. My dad just had a blood too-up and it’s cured the fatigue totally. Best wishes
User
Posted 07 Aug 2018 at 19:42
The trouble is, there is no way of knowing how much of the recent fatigue is down to this sustained hot & muggy weather; I think lots of us without any health problems feel worn out so it must be worse when you are already weakened. I so hope that the transfusion gives you the boost you need x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Aug 2018 at 20:11
Good luck with the transfusion Paul

Hope you are feeling better this time tomorrow

Bri

User
Posted 07 Aug 2018 at 20:20

Hi Paul,

Thank you for the update ,

Good point from Lynn 

I know i feel like S'''e with all this heat

 

Barry

User
Posted 07 Aug 2018 at 20:38

Good news on cancer control and kidneys are ok. Hope you get the desired boost with the blood transfusion Paul.

All the best,

Ian

Ido4

User
Posted 07 Aug 2018 at 21:22
Good to see the update Paul, thank you.

Blood transfusion will give you a huge boost, especially if the temperature drops a bit as well.

Good luck tomorrow.

We can't control the winds - but we can adjust our sails
User
Posted 07 Aug 2018 at 23:01

Paul

Hope all goes well tomorrow.

Thanks Chris

User
Posted 11 Aug 2018 at 10:09
Ok i’ve Had the blood transfusion and it has certainly given me a boost. I am been reflecting on the phenonmenum of cancer-related fatigue and have written a blog. Hope it might explain the issues which can surround this notion of fatigue. Be interested in your thoughts.

https://yorkhull.wordpress.com/2018/08/10/cancer-related-fatigue/

User
Posted 11 Aug 2018 at 13:50

You have described the fatigue really well in your blog Paul. I relate to a lot of it even although I haven’t been through all you have been. I find that my speech and my thinking processes are affected when I get over fatigued. Also my toilet issues become more pronounced. I have decided to retire early from my job as a curriculum leader of science and physics teacher. I have eventually accepted the advice from health professionals, my family, and my close friends that what I was doing was unsustainable. The diet/eating anxiety you describe I haven’t experienced but it sounds very difficult. I hope the boost and the increase in  mental clarity you describe lasts for a while. 

I liked the pictures in your blog too. Nice times with people you love.

Wishing you all bes wishes,

Ian

Ido4

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 !

 
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