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A New Chapter

User
Posted 18 April 2016 13:58:32(UTC)

Hi,

I start a new chapter in my life when I'm due to end my treatment at the end of June following two years of Hormone therapy and four weeks Radiotherapy. 

It's been hard going at times, especially in the last couple of months where fatigue has been overwhelming but I was looking forward to it finishing.

Last week, I saw my GP, following a day in hospital last Tuesday and he thought I should have a complete set of blood tests done.  He added a PSA test to the request as I mentioned it was November since I last had one. 

I rang this morning to see if the results had come through, hopefully that the downward tread since radiotherapy would have continued to an even a lower figure.  In November, my PSA was 0.027.  The results today were 0.043.  The first rise I've had for 18 months.  I was a little disappointed.  I know they can vary a bit so perhaps I shouldn't be concerned but my GP wants to see me about my other blood results so I'm curious why that would be. Hopefully nothing to worry about (easier said than done).

Steve

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User
Posted 21 March 2017 01:04:54(UTC)
Hi,

So pleased to have completed the Reading Half Marathon on Sunday, the first one I've competed in for over 30 years. A very slow time (3hrs 14mins 06secs) but the only thing that mattered was finishing ok and not taking any chances with my heart.

It brought back memories of why I used to do these, it's so much fun.

I'm suffering now with aching muscles and the worst blister I've ever had, on my ankle, but doing it was so worthwhile, in spite of the pain.

There were times, after my heart attack, when I thought I would never be able to do one of these again. But this proves to me that everything's possible, if you want it enough.

Thanks everyone, especially my wife, for the support you have given me throughout everything.

Steve
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User
Posted 17 February 2017 23:36:34(UTC)

Hi,

Finally discharged from hospital this evening.

I did the Treadmill Test this afternoon.  I beat my previous best times. 11 minutes 25 seconds, during a difficult test where the speed and inclination of the treadmill increases every three minutes. You're not allowed to run, only walk, so it really pushes your heart rate to it's limits.

I was really pleased with how I did but when the results were reviewed by the consultant, he decided that they showed I did have a problem with my right coronary artery. It may be starting to block again (for the third time!). It's minor at the moment but he wants to see me again in two months time to decide if I need another operation. 

The good news was that he did give me the go ahead to do the half marathon.

It's good to be home.

Steve

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User
Posted 06 March 2017 19:47:31(UTC)
Hi,

Just had my results from a PSA test done last week. I'm really pleased, they have increased but not by as much as I suspected they would.

The figure has risen to 0.21 from 0.136 three months ago.

I'm happy with that.

Steve
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User
Posted 18 April 2016 14:41:29(UTC)

Hi Steve

I think you have hit "ultra-sensitive psa test anxiety". You are down at such low levels of measurement that something like the time of day that you had the blood sample taken might alter the result. My GP (who I trust) is happy that any result under 0.1 is treated as effectively unmeasurable.

In Wales, the NHS is desparately short of funds, so we only have the less sensitive PSA test. As long as I keep clocking up <0.1, I'm happy and I can reserve my stress levels for other things. All the same, the family can tell when I am in the waiting period between each blood test and the result - that bit of anxiety doesn't go away!

If you want something to stop you worrying about PSA, start supporting Leicester City.... or Lewis Hamilton.... or Andy Murray.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
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User
Posted 18 April 2016 15:49:50(UTC)

Hi Tony,

You're right of course.  I think my main concern is about the other blood test results as my general health and fitness have got worse over the last two months.  I can't even run much more than twenty yards without being totally exhausted.

I've edited my post to put my last line next to my previous sentence instead of starting a new paragraph.  It seems to make more sense that way.

Don't worry, I'm more stressed by the fate of Leicester City, as Bill Shankley once said talking about football "It's not about about Life and Death, it's more important than that!

Steve

User
Posted 18 April 2016 17:47:23(UTC)

Know what you mean. Last year, testosterone virtually zero, so on Testosterone Replacement Therapy, this year, thyroid too low so pills for that and now have to see haematology because my full blood count is too high. Good grief, falling to pieces.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
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User
Posted 18 April 2016 17:59:49(UTC)
Steve

As T say PSA is still low, but I know how you feel, any rise gets the brain working overtime. Hope the other bloods are nothing major.

Thanks Chris
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User
Posted 18 April 2016 19:58:41(UTC)

Wait to see what the GP says.
It is natural to worry, so it is allowed, and you don't need to worry about that reaction!
Best of luck.
Henry

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User
Posted 22 April 2016 22:52:39(UTC)

Hi,

Saw a GP today and he said that my blood test results showed that I was anaemic.  He's sending me to have more blood tests at the hospital to try and find out why this is happening.  So hopefully, it will be sorted soon.

Facing a really interesting weekend as I'm working as a photographer for Prostate Cancer UK at the London Marathon.  I'm really looking forward to it.

Last Sunday I covered the Brighton Marathon for them, which they seemed pleased with, so hopefully, I can do the same for them this week.

Have a good weekend.

Steve

User
Posted 23 April 2016 06:18:22(UTC)
Steve

Have a great time at the marathon and remember not to join in with the running.

Thanks Chris
User
Posted 23 April 2016 06:23:13(UTC)

Glad you are feeling more able to do stuff again Steve. Those light sunny mornings help me loads. Boosts me completely.
Chris




If life gives you lemons , then make lemonade
User
Posted 23 April 2016 09:50:53(UTC)
Thanks,

Chris, I don't think I will joining in as I'm finding it difficult to run at the moment. My energy levels are really low. I'm being checked out by the hospital but really need to have the Cardiac MRI scan.

Chris J, feeling good about being able to do some of my work for PCUK, they've just asked me to be their photographer for the London to Amsterdam Cycle Ride in June, so that should be interesting.

It feels good to feel that I might be doing something worthwhile.

Thanks guys.

Steve
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User
Posted 23 April 2016 11:51:28(UTC)
Great news Steve, and lovely to see you posting again in such a positive frame.

I hope that they can sort out the anaemia issue, as this will be sure to be making you feel tired out and with all this work coming up you will need some extra energy!

ATB

Alison

User
Posted 23 April 2016 12:07:16(UTC)
Thanks Alison,

I feel very much as if I need a new set of Duracell batteries for my body. Looking forward to ending my hormone treatment in June to see if that gives me an energy boost. Hope so.

Hope everything is ok with you.

Steve
User
Posted 23 April 2016 13:22:47(UTC)
Steve,

I'm really envious of you stopping HT in June. I've been given a further year now and am due to finish in August 17 ( 36 months ). Being on HT is really draining so I hope that you gain the extra energy coming off this summer. Fingers crossed for you. I could with some of that energy right now !

John
User
Posted 23 April 2016 17:40:08(UTC)
Hi Steve

We are okay at the moment thanks, breathing a sigh of relief after the blood in urine incident on Easter Sunday.

My OH finished the HT about 6 months ago and starting to feel a little more energized, I know it takes time, I hope you will feel the same.

keep in touch

Alison
User
Posted 23 April 2016 21:08:55(UTC)

Not long now before the end of HT and increased energy as it's effect diminishes.

Have a great day tomorrow - will be watching on TV.

Barry
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User
Posted 24 April 2016 16:37:21(UTC)

Hi Steve
I'm very envious also that you're coming off HT. The fatigue really does get to you.

I've just had my 6 th 12 weekly Prostap jab and whilst I'm still running I'm struggling to do much more than a 10k.
I have to say though that after I've run that I do feel recharged so exercise for me seems to help.

I hope everything goes well for you and look forward to you reaching the "cured" camp.

Paul

Ps Hope you enjoyed photographing the London Marathon

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User
Posted 28 April 2016 23:28:27(UTC)

Hi,

Good News. 

I've finally received the date for my Cardiac MRI Scan (after a three month wait).  It's booked for the 22nd. May at 9am.  I was surprised to see that it was a Sunday but when I received the written details this morning, I found out that it's going to be done at a private hospital.  Probably my regular hospital is trying to catch up with the backlog of appointment requests.

I hope this scan helps to find out if my heart is performing ok and the arteries are not blocking up again.  If everything is ok then it will be a big relief and give me confidence that I'm not going to suffer a heart attack again if I push myself too hard.

I suppose if the heart was blocking again it would be a reason why I've been feeling breathless and so lacking in energy in recent months.  I feel so exhausted most of the time, far more than I've ever done before.

I know finishing HT in June will help with the fatigue and if I get the all clear for my heart in the next month, it will help me to feel as I used to before these medical issues started (if that's possible for any of us here).

Steve

 

 

User
Posted 29 April 2016 06:27:32(UTC)

fingers x steve it all goes to plan

regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
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User
Posted 29 April 2016 09:59:02(UTC)

Hope all goes well for you
Very Best
Gary

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User
Posted 29 April 2016 12:50:17(UTC)
Steve

Hope all goes well with the scan.

Thanks Chris
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User
Posted 29 April 2016 15:24:09(UTC)
Another wait Steve, til 22 nd May, but I hope all goes well for you and they can get to the cause of the heart problems.

Sounds like you are still feeling quite upbeat, good for you!

ATB

Alison
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User
Posted 29 April 2016 19:27:02(UTC)

Steve
Wow I'm not surprised if yore feeling upbeat.
Heart scans in May hopefully will show all is well and coming off HT in June well don't we all want to be off HT.
All the best
Paul

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User
Posted 13 May 2016 18:33:05(UTC)

Hi,

I just realised that it's two years ago today that I was sent to hospital for blood tests which resulted in me finding out that my PSA was 48.85.

I didn't even know what PSA was and didn't realise that I was beginning a journey that was going to change my life forever.

Perhaps 13 was an unlucky number for me.

Steve

 

User
Posted 13 May 2016 18:47:32(UTC)
Steve

I think we have both had an "interesting " two years, let's hope the next two years turn out to be good but uneventful. Take care.

Thanks Chris
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User
Posted 13 May 2016 21:00:39(UTC)
Hi Steve

Maybe 13 is your lucky number. Just think if you hadn't had those tests things might have turned out even worse.

I can understand your feelings though as I always think similar on my "anniversary".

Sending you my best wishes.
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User
Posted 13 May 2016 21:39:11(UTC)

Good luck for the 22nd Steve. I'll be thinking of you and keeping everything crossed.

I'm not surprised you're exhausted. A combination of HT, anaemia and stress is not a good cocktail.

Best Wishes to you as usual

We can't control the winds - but we can adjust our sails
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User
Posted 14 May 2016 00:06:51(UTC)

Hi Steve
Let's hope the next two years will be better, they can't be any worse than the last two. Keep on going, you will do that half marathon yet.
All the best
Paul

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User
Posted 14 May 2016 06:47:29(UTC)
Steve,

I'm approaching my second anniversary since dx too. But I think my journey has been slightly easier than yours. However you will soon be released from HT whereas I have a further year to go.

Good luck for the 22nd.

John
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User
Posted 15 May 2016 11:43:34(UTC)
Hi Steve thinking of you on the 22. Jx
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User
Posted 19 May 2016 01:24:55(UTC)
Hi,

Thanks for your messages.

Starting to feel anxious about the outcome of the Cardiac MRI Scan l'm due to have on Sunday. I suppose I feel worse because I've waited so long for it. If it reveals that I'm suffering further problems with the arteries then I may face the possibility of further treatment not only this year but in future years. If no problems are found, it raises the question of what else could be causing the total lack of energy and severe breathlessness. I've suffered with fatigue during the last two years of HT but never as bad as this.

I haven't slept well the last couple of nights, which doesn't help.

Hopefully, taking part in a planning session with PCUK later today about my role as the photographer for the London to Amsterdam Cycle Ride in a couple of weeks time will take my mind off things.

The trip should be fun providing health issues don't get in the way of me going. Feeling that, somehow, you are helping with the work of the charity really helps raise your spirits.

Must try and sleep now.

Steve
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User
Posted 19 May 2016 06:22:41(UTC)

Two forty five in the morning and you're still up and on the computer!! Hope you got some rest. I do know what it's like to be awake when the rest of the world seems to be able to get its head down. It's a very lonesome feeling.
It also allows the mind to wander, probably down paths you shouldn't be looking at because there are no distractions.

Hope the planning sessions go well. Yes it's something to focus on as well as helping PCUK, but this is for you Steve.

It's what you do, what you are good at. I know you'll give it your very best shot. You'll need to find the strength and energy from somewhere but I'm sure you'll do it.

Go Steve Go !!!!!

We can't control the winds - but we can adjust our sails
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User
Posted 19 May 2016 06:49:14(UTC)

hi steve
hope you managed to get back into the land of Nod, the bike ride gives you a good focus at the moment have you posted any pics from the London marathon

regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
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User
Posted 22 May 2016 06:10:42(UTC)
Hi Steve,

Wishing you all the best for today, hope it goes well

Arthur
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User
Posted 22 May 2016 06:44:51(UTC)

Hi Steve best wishes for today and I hope all goes well

Regards Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 22 May 2016 06:50:26(UTC)
Steve,

I hope that all goes well for you today

John
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User
Posted 22 May 2016 07:34:51(UTC)
Hi,

Thanks.

Just arrived at the hospital, about to go in.

Funny, I'm sitting in my car next to the flat I lived in for five years before the building was bought by the hospital for use as offices. So many happy memories of that time.

Have to go.

Steve.
User
Posted 22 May 2016 12:26:50(UTC)

Hi,

Home now, following the Scan.

Scan seemed to go Ok but quite hard going.

Made me feel really tired, going to have to have a sleep before giving more info.

Steve

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User
Posted 23 May 2016 12:00:16(UTC)
Good luck Steve

Bazza
I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.
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User
Posted 23 May 2016 12:44:05(UTC)
Steve

Look forward to hearing good news from you.

Thanks Chris
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User
Posted 23 May 2016 13:03:24(UTC)

I hope the results don't take too long Steve

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


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User
Posted 25 May 2016 09:29:19(UTC)

Hi,

I managed to speak very briefly to the cardiologist who wanted me to have my Cardiac MRI. 

The good news was that I do not need any further treatment just at the moment and  she ok'd the Amsterdam trip. 

Not so good was that she said the MRI showed my heart has been damaged as a result of the heart attack and other operations I've had and unfortunately it can't be repaired.  So it looks like things may not improve.  I'll have to live with it. 

 

At least I'm alive.

Steve

User
Posted 25 May 2016 10:32:37(UTC)
Steve

Not the best news, but as you say you are still alive. Still being here always gives a hope of improvement. Enjoy the Amsterdam trip and don't do anything silly.

Take care.

Chris and Dawn
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User
Posted 25 May 2016 10:46:44(UTC)

hi steve
not the best of news, but you are still going to Amsterdam, stay off the wacky bakkie

regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
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User
Posted 25 May 2016 11:32:58(UTC)
Steve,

After all you've been through you still have the green light for your Amsterdam trip. Shame about the other news though but as you say you're still with us.

John
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User
Posted 25 May 2016 12:24:24(UTC)

Sorry it wasn't better news Steve but forewarned is forearmed.

It presumably explains your constant tiredness?

Enjoy that Amsterdam trip

We can't control the winds - but we can adjust our sails
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User
Posted 25 May 2016 12:31:09(UTC)

Sorry the news was not the best.

Enjoy your trip to Amsterdam.

 

KRO...

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User
Posted 25 May 2016 13:31:06(UTC)

I guess at least you know where you are now and can plan accordingly. Hope you really enjoy your trip.

Best wishes

Rosy

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User
Posted 02 June 2016 00:23:59(UTC)

Hi,

Just had my last (hopefully) Zoladex hormone implant at 5.40pm today (Wednesday).  I really look forward to feeling a little better over the next few months.

Steve

 

User
Posted 02 June 2016 05:55:18(UTC)
Steve,

The word 'envious' comes to my mind, I'm really pleased for you that you've had your last jab. Hopefully the side effects from the last 2 years will wear off for you soonest.

John
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User
Posted 02 June 2016 06:39:22(UTC)

Good news for you Steve.

Now it's just finding patience!!

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