A Long Tale of Illness

[Lady_Ava_Hay]

It took me a long time to post this as i felt that there is enough doom and gloom about to last us a lifetime anyway. As I say, it has a happy ending and i thought that that might carry it all through.

 

In July 2013 I was diagnosed with type 3 locally advanced prostate cancer. My wife and I were devastated although I was given a 70% chance of a successful cure.

 

For those who are interested my PSA test result was 59 and my Gleason score was 9. I was apparently riddled with it but only in the prostate gland itself and in the immediate vicinity of that gland.

 

I was nearly symptomless and had volunteered for the PSA test because one of my acquaintances in the model railway world had discovered that he had the disease.

 

Looking back there WERE symptoms but i had put them down to Anno Domini.

 

Anyway, i tried to carry on as normal with a dose of chemo in my arm.

 

Whilst away in Torquay in September 2013, my friends and i decided to walk the ten minutes from the pub to our hotel. Needless to say i had quite bad chest pains and had to stop frequently only for the pain to go away in seconds.

 

So I went to the Doctor. Treadmill followed by angiogram gave a further additional diagnosis of a severe stenosis of the dystal left main coronary artery. I Googled that and was horrified by what i had. Although I was now on additional drugs, my quality of life plummeted yet again. I decided to defer any treatment until my radio therapy was completed. I started that in October 2013 and went every day, five days a week for 7.5 weeks. Empty rectum, full bladder every time. There is a video of me on the machine and I will direct you to YouTube if you are interested. Awesome machine. The sound of it will remain with me forever.

 

There were no good days at all. Indeed there were one or two where I considered that, if I felt this unwell very much longer........well enough of that!

 

My radiotherapy finished on the 23rd December and the side effects were, by now, difficult to ignore. They did start to fade as promised.

 

On the 10th February I had two stents fitted to my heart. i was on the table for an hour and a half and in overnight. The cardiac people had dovetailed the procedure so that I was healing from the radio therapy as they went for Gold in my heart. No anaesthetic for any of this and again, if anybody wants details I will be happy to provide them by private message. 

 

None of this was a walk in the park.

 

Now for the happy ending.

 

On last Monday 10th March I had the results of my first post therapy blood test. My PSA score is 0.3! The oncology department passed my back to my Doctor and said 'see you in a year'.

 

Today 11th March I went on the treadmill again. Cardiac signed me off as well.

 

I feel ten years younger and can now contemplate doing that overhead underboard wiring.

 

All this treatment was done under the NHS and cost me nothing. I will not have a word said against them apart from me feeling lucky that we have the finest radio therapy machines in Europe in Poole Hospital and the finest world class stent fitting Cardiac Intervention Unit in Bournemouth Hospital and i live within bus range of both.

 

So now you know.

 

The only advice I can hand out is not to ignore any symptoms that you have and, in particular, don't think that anno domini is the reason for anything unless your Doctor agrees with you. Oh, and DON'T trust to luck.

 

Thanks for reading this far. I won't post again or reply on here, just use the 'like' buttons or send me a message asking for details.

 

[Kenton]

 

My PSA score is 0.3!

 

PSA of 59 was not exactly astronomic (there is an age related increase in all men) and not always indicative of risk.

 

but 0.3! - no wonder you feel 10 years younger. Or even 40 years younger. Although getting there sounds as if it was hell, arriving also sounds worthwhile. Hope you have many happier years ahead and free of hospitals - they are generally good places to be when you are really ill but best avoided if you can.

 

Oh, and thanks for sharing the history with us. Very difficult subject and if you (everyone else) are in one of the higher risk groups and getting on a little in years ... get it checked out.

Edited March 11, 2014 by Kenton

[trisonic]

Annual check ups help - for everything. Being pro-active is the key for old farts like us.

 

Best, Pete.

[34theletterbetweenB&D]

Yup, and get you to a medic as soon as anything feels slightly amiss. It is pretty amazing what can be done now, and early entry is almost always better for outcome than checking in when already in a poor state. (That said there will always be some who were essentially symptomless up to the point of the major problem; luck of the draw stuff which has carried off a couple of my friends far too young.)

[Lady_Ava_Hay]

Just a quick update on this the tenth birthday of RMWeb.

 

Another blood test with a PSA score of 0.09 ( yes that '0' is in the right place BEFORE the '9'.

 

Oncology were pleased as well and informed me that i would come off the chemo in December.

 

My heart has settled nicely and i can do all of what i want to do without pain or other problems.

 

Not yet cured but looking good.

 

Unfortunately I took the decision that Readstoke was no longer a viable option for me so I sold all bar a few items last August. I can still run trains in the inimitable style of settrack on the carpet but at least all the locos have sound!

 

All the skills I learned on the way are still with me and i have some great memories and own some beautiful models which i treasure.

 

Plus the DCC sound forum has settled nicely and seems more amenable these days.

 

So a happy tenth for all of us I think.

[Mallard60022]

I am so pleased for you David. Too many friends and some contacts on here, have not taken the step of getting checked regularly and they are no longer here.

Tests can help enormously but, one knows one's own body quite well after 60+ years and I urge folk to not just rely on tests (as proven above). If you don't feel right, get it sorted and ask for second opinions if you still think things have not been satisfactory.

May you continue to enjoy your 'second chance' and enjoy life to the full.

Phil

[Jol Wilkinson]

David,

 

I have only just stumbled across this thread. You have my sympathy and understanding.

 

I had radical prostate robotic keyhole surgery one week ago, which will hopefully provide a complete cure. I had a psa of 5.9, Gleason score of 7 (3+4) and no apparent spread beyond the prostate.

 

Stats vary but 1 in 12 men will apparently get prostate cancer. Since being diagnosed on 5th January, it is also remarkeable how many others have "come out" when they found out my situation.

 

My experience through my diagnosis, hospital visits, scans, etc. (I cannot praise the NHS highly enough) has rather changed my view on things. I shall continue modelling but frankly I have lost interest in much of of what is written here on RMweb, not so much the subject, more in the way it is expressed. It is perhaps an awareness of how bad things could be, that makes some people's unhappiness with the latest model, price rises, kit instructions, etc. seem rather trivial.

 

Best wishes,

 

Jol

Edited March 17, 2015 by LNWRmodeller

[TheSignalEngineer]

................ I shall continue modelling but frankly I have lost interest in much of of what is written here on RMweb, not so much the subject, more in the way it is expressed. It is perhaps an awareness of how bad things could be, that makes some people's unhappiness with the latest model, price rises, kit instructions, etc. seem rather trivial.

 

 

I felt the same after sitting through three days and nights at my Father's side as he was dying. I came back to RMweb with 22 pages of unread posts and on flicking through them I read only a handful before deciding I couldn't stand any more of things like those you mention. I then went to another site and a former member was still whining on about RCH 7-plank wagons. 

[Lady_Ava_Hay]

David,

 

I have only just stumbled across this thread. You have my sympathy and understanding.

 

I had radical prostate robotic keyhole surgery one week ago, which will hopefully provide a complete cure. I had a psa of 5.9, Gleason score of 7 (3+4) and no apparent spread beyond the prostate.

 

Stats vary but 1 in 12 men will apparently get prostate cancer. Since being diagnosed on 5th January, it is also remarkeable how many others have "come out" when they found out my situation.

 

My experience through my diagnosis, hospital visits, scans, etc. (I cannot praise the NHS highly enough) has rather changed my view on things. I shall continue modelling but frankly I have lost interest in much of of what is written here on RMweb, not so much the subject, more in the way it is expressed. It is perhaps an awareness of how bad things could be, that makes some people's unhappiness with the latest model, price rises, kit instructions, etc. seem rather trivial.

 

Best wishes,

 

Jol

I understand that last comment very well indeed. One's perspective on near everything changes, partly on facing mortality and partly from the chemotherapy in my case. It does settle but foolishness and unstructured whinging becomes near intolerable. Funnily enough this is counterbalanced by a patience with new members asking the same question that has been asked many times before plus you ser new, younger faces taking your advice and expanding on it in new fields.

[Allegheny1600]

Hello David,

I've only met you the once but you struck me as a very nice Gentleman indeed and your posts on here were always informative and reasoned and I had wondered where you had got to.

I'm relieved for you to have come out of this much better than you went in, it must have been very trying for you, good for you and long may you continue.

All the best,

John E.

[Robert]

Great to hear that the story has a happy ending!  Long may it last.

 

Stories like this tend to indicate just how trivial some of our worries are.

[jonny777]

Hello David.

 

What an emotional story of agony then ecstasy. I cannot even begin to imagine the lows that you have been through, but the 'all clear' must make that all worth while 100 times over. I often think about it but have no real idea how I would react mentally in the long term if the doc said "sorry Jonny, it's cancer".  Therefore, I have the utmost admiration for those, and their families, who have been through it.

 

Congratulations on coming out the other side feeling like a spring chicken again.

 

Yes, we do have a wonderful NHS and although a few mistakes get hyped up from time to time, the millions of satisfied patients after successful treatments are the things we as a nation ought to be concentrating on.

 

Thanks for your post. You have made me think far more seriously about what I ought to be doing from a good health standpoint.

 

Best wishes for a long and healthy future, and the many decades of modelling ahead.

[Giles]

Just for reference, these are the 'normal' cut-off levels for different age ranges (over which your GP will usually take an interest, in my experience....)

 

PSA Cut-off

40-49 2.7

50-59 3.9

60-69 5.0

70-75 7.2

 

 

It was carefully explained to me that a higher PSA can be caused by things other than cancer (such as prostatitis). I am no expert - except in my own conditions and circumstances...!

Edited March 18, 2015 by Giles

[Barnaby]

Hello David

Thanks for sharing your experiences of over coming your health troubles. Inspiring to read your very positive attitude now & looking forward to doing some modelling.

 

Great read.

[The Bigbee Line]

A second chance is a wonderful thing. I got mine in 2010 when I had Toxic Shock after a burst appendix. I had no idea how close to death I was.

The hospital treatment on the NHS was A1.

I still have reminders; scarring from Acute Lung Injury and a weak left arm and hand from muscle wastage. But I'm much more aware of my mortality.

I try and make the most if things, don't get too worked up about the unimportant, have no patience about the important.

 

I do things now I never thought I'd do. Yesterday we went to Nottingham to see Lionel Richie. Great night. You'd be surprised by the age profile of the audience.

 

You only get one life. Make the most of it.

[Lady_Ava_Hay]

A second chance is a wonderful thing. I got mine in 2010 when I had Toxic Shock after a burst appendix. I had no idea how close to death I was.

The hospital treatment on the NHS was A1.

I still have reminders; scarring from Acute Lung Injury and a weak left arm and hand from muscle wastage. But I'm much more aware of my mortality.

I try and make the most if things, don't get too worked up about the unimportant, have no patience about the important.

 

I do things now I never thought I'd do. Yesterday we went to Nottingham to see Lionel Richie. Great night. You'd be surprised by the age profile of the audience.

 

You only get one life. Make the most of it.

You would barely believe how I spend a lot of my leisure time these days!

 

I have neverthless booked a seat for a Joe Satriani concert in Portsmouth later this year.

[Lady_Ava_Hay]

Just a quick update

Oncology were pleased as well and informed me that i would come off the chemo in December.

 

My heart has settled nicely and i can do all of what i want to do without pain or other problems.

 

Not yet cured but looking good.

 

 

Note that it is now December and I can announce that I stopped taking the two chemo therapy pills yesterday, Sunday 27th.

 

Strangely I am a bit apprehensive.......

[Mallard60022]

Go for it David. You are a bl**dy inspiration mate.

Phil

[Jol Wilkinson]

Note that it is now December and I can announce that I stopped taking the two chemo therapy pills yesterday, Sunday 27th.

 

Strangely I am a bit apprehensive.......

David,

 

I can understand your apprehension, I've just been to get a blood test ahead of a three monthly review at Addenbrookes in a couple of weeks. My previous result have been satisfactory but there is always that slight nagging doubt.

 

However, we have to be positive and thankful that we live in a time when medical science is wonderful compared to twenty or thirty years ago and getting better all the time. 

 

Best wishes,

 

Jol

[Lady_Ava_Hay]

The best laid plans of mice and men...........

 

I finished my hormone therapy in December and was feeling absolutely fine. L1b1do returned and part function of the dangly bits.

 

I went for my first Oncology appointment last Tuesday 21st March and the results of my PSA blood test was a reading of 9.6. Last September it was 1.2.

 

Oh dear! Oncology are near certain that my prostate cancer has returned.

 

I am now starting a raft of tests to see what has gone wrong and to decide on the best ongoing treatment. I must say that a lifetime on hormone therapy is unattractive and, in view of the current regression, possibly not really trusted in the long term.

 

There is the option of orchidectomy and I am tempted although I will do more research into that option as it is so permanent and, if it fails to work for some reason, is a waste of time and effort and narrows the future options. I do know that the hormone therapy that I would be on if I choose that route or if it is recommended as the best alternative, might well put undue strain on my heart and advance the heart disease at an unacceptable rate with little chance of a surgical fix because of the cancer and its treatment.

 

Rock and a hard place come to mind.

 

Sorry to burden you all but if anyone has any experience of this scenario or knows a urological surgeon who has done the orchidectomy in relation to my specific diseases then a referral would be nice.

Edited March 23, 2016 by dwhite4dcc

[Giles]

David, I'm extremely sorry to hear your news - and I certainly have no information that could be of any assistance - but I do wish you well, and very much hope that you find yourself in competent and reassuring hands.

 

All the very best,

 

Giles

[Barnaby]

Sad news indeed David.

 

I can not suggest any Specialist Surgeons to assist with your medical condition but I do wish you success with your existing surgical team.

 

Thinking of you.

 

Mark

[Kelly]

Sorry to hear of your relapse. Hope your doctors come up with an acceptable solution for you and you recovery as best as is possible, etc.

[pointstaken]

Also having had a double stent and a pacemaker inserted, plus Type 2 diabetes, I can sympathise to a degree. I am not in any way in as bad condition as yourself, I can only offer you my profoundest sympathy and I hope, understanding. I hope that in 10 years time, we will all still be here,

and have an electronic reunion, with Mallard (Phil) as master of ceremonies. One can dream, can't one ?

 

Dennis

[Lady_Ava_Hay]

Progress!

 

I have spoken to an Oncology nurse today. I won't bore you with the content of the two conversations we had apart from the Urology surgeon's comment to her that an Orchidectomy is a simple operation under local anaesthetic, is a fair option for me and 'should give (me) a long period without cancer'.

 

The usual cautious response but that 'long' and 'without cancer' are sooooooo attractive.

 

Nevertheless the options will be discussed in greater detail after my scans which have been requested by Oncology.

 

BTW just to lighten the mood a little, I went to this appointment fully dressed. Some of you may know that I am a transvestite. The look on their faces was a picture and I had a lot of fun even though the news was worrying.

 

I also wanted to show them that the loss of masculinity caused by the prostate cancer and its treatment was not a psychological problem for me; in fact a lot of the side effects were a dresser's wet dream! Every cloud has a silver lining.