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Post RP and SRT journey - October meanderings

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Hi all

I thought I would start a fresh thread as things have changed dramatically.

My PSA has rised to 0.24 and I have now started HT (casodex with two three monthly injections of Triptorelin).

Back story.

PSA rose to 4.0 early last year.

Biopsy suggested G7 (4+3).

RP surgery (bilateral nerve sparing) confirmed the Gleason with staging marked as T2c, with 3% of organ marked as tumour.

PSA rose to 0.17 at the end of Feb and 0.24 at end of March. Total 7 months

Aww crap.

Saw the onco on Tuesday.

Quite direct, told me straight out I was going on HT (6 months) and RT (months 4 and 5).

Flatly refused to discuss PSADT / nomograms / outcomes / forecasts on the grounds that "every case is different". Basically "we will treat you and respond / react / change treatment according to your blood tests as and when". Told me no scans as it would be too small to detect and could never tell if local of spread. I worry that he is pessimistic but won't let on because my records note my anxiety.

Got given all the info about side effects which I already knew.

Basically I feel on a conveyor belt now.

Unfortunately I am a high functioning pessimist at the moment so I have written myself off given the early (ish) relapse and the (relatively short) PSADT.

I need someone to shout at me and tell me to stop being a worrier and get on with it.

Cushions

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Indeed it will :)

Just wanted to thank you all for your kind words helping me with my fears.

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Cushions,

My next is at the end of March and I am at the moment at least quite cool about it despite the fact that I know that I am running on fumes with respect to ADT, etc so the chance that the cancer will return is increasing.
Wife keeps on saying that I am cured, yeah right!

Best wishes,

Georges

Josephg
Posts: 232
Joined: Jan 2013

Yes, I believe that all of us were/are anxious, prior to the next visit to the doctor for a PSA reading.

I know that for me, during the early years of my PCa journey, I'd start to become anxious up to a month or so, prior to the visit.  At first, I was not even aware that I was becoming anxious, but the folks close to me were aware.  I'd get questions like, "Are you feeling OK today?", or "You seem distracted today.", or "Geez, you seem irritated about something today.".  And, after some reflection upon these comments, I would realize that the upcoming doctor visit was in fact the source of my anxiety.  The point here is that your anxiety does not only impact you, but it also impacts the folks around you, and not in a positive way.

Over time, as I finally fully and totally accepted the fact that I had PCa, my anxiety prior to each periodic doctor visit subsided for the most part.  Sure, I still do get a little bit anxious prior to the doctor visit, the fear of the unknown new PSA number, but only a small fraction of what it was in the early days.  And, I make a very concerted effort not to let any of my small anxiety spill over onto the folks around me, as it is simply not fair to them.

I believe that a major part of the solution to anxiety prior to the doctor visit, and to the whole PCa journey as well, is to totally and fully accept the fact that PCa has crossed your path in life.  It does not matter how or why it happened, and the lack of acceptance does not change any of the future outcomes associated with PCa journey.  Accept the fact that PCa has crossed your path in life, and move forward in life, day by day, making the most of each day.  Yes, it is not an easy acceptance, and some PCa patients may never reach that point, but it is very much required, and the sooner the better, for both your personal state of mind and the relationships with the folks around you.

In my opinion, life is like an extended game of cards.  You are dealt many hands of cards during the card game of game, and you have absolutely no control over the cards that you are dealt in each hand.  What you do have control of, however, is how you play those cards that you are dealt.  Play the cards that you are dealt in each hand in the card game of life to the best of your ability, and then you have done the best that you can do for yourself, and equally important, for the folks around you.

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Georges

Cheers

 

Joseph

I think you hit the nail on the head. I am still to a greater or lesser extent "in denial" in that I want to be "cured" and am praying for the numbers to drop to support that desire.

Your mental position reflects the Stoic / Taoist mindset of embracing the here and now and letting things play out. The challenge I have is that like Indiana Jones in the Last Crusade I need to step off the cliff edge and trust there is an invisible bridge of acceptance and let things play out and deal with them as best I can. The irony is that we are all going to drop off the perch and we do not know when so we might as well stop wittering and get on with it. I am focusing on that right now and trying to get some meditation going.

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Cushions,

I would rather have sponge cushions down there before stepping off the cliff. Let's play safe. I wonder about the PSA result and above all if you finally got that job you wanted so much. They want IT specialists down here in the Algarve. You may need now a newer passport to cross the Chunnel but you are always welcome for whatever reason. I hope that Boris has not stepped off the cliff by leaving the EU.

Best,

VG

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Hi V

I had my blood draw yesterday and the results call early next week. What will be will be.

I would dearly love to work in the EU as this country is going downhill at a rate of knots. I'd emigrate if I could but I doubt a middle aged cancer patient would be let into Portgal :)

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi there,

That is slow, I go in during the morning and I have the result for most things like PSA, etc in my personal results account online in the evening.
I have the results before the doctors, sometimes it is only me that has the results because the dafties lose them.
Testosterone takes a week because they accumulate the samples and run that one once a week.
I have a strange attitude towards Brexit I feel that my country has left me, passport runs out in 2025, I think I will be French before that!

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Why changing nationality? Will that bring you any benefit?

UK nationals are Europeans in the eyes of everyone here and nobody is unwanted for their nationality. With the Brexit, rules and directives may change and so are public benefits. I wonder if UK patients like Cushions can continue using their free-of-charge NHS cards in EU's national health programs. However, in your case, married to a French girl, you may not need to worry about medical matters as you are included in the French system automatically. My wife is English (a Chester girl I met in Tokyo 42 years ago) and she has just renovated her UK passport but she enjoys all social benefits of EU's (including EU's NHS) for being married to a Portuguese. She gets 50% discount on tickets (travel, entertainment, etc) and has a GP like anyone resident here. Cushions would need a working permit if he prefers to continue as a resident of UK, or move to EU as resident paying taxes here and do what he wants. I cannot think on restrictions by employers due to the fact of his PCa case and age. It all depends on what he wants to do and on what's available. IT specialists can do their job independently of age. There are thousands of UK residents in EU that like to be assisted by UK based business. I believe that one of those companies would be interested in Cushions if he has a local resident status. Expat status gets lesser interest. 

Well, I am also expecting to read about your remission case. Let's celebrate it again.

VG

 

 

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Vasco,

I am not going to change nationality, just add one to the one I have already.
This will make things easier for me in terms of continuing residence as I will avoid the need to have a residence card, etc.
I am an IT specialist as well and although my French is not bad I have accepted the fact that it is not good enough to work in an office.
It is possible that I could do other work but I am now 57 and my health has suffered as a result of the treatment.
Before February 2018 I had a lot more bounce and energy than I have now. For instance I have been a keen gardener for many years and I thought maybe I could start a gardening business but I no longer have the ability to do a full days manual work, I get cold quickly so I cannot stay outside for long periods of time.
It is possible that I may recover more but that may be offset by aging as well.
I have not done too badly considering, I have got over the incontinence completely, I hope that more of my sexuality will return, etc, but at the end of the day I have to accept that I have lost some things.

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

I had a look for IT jobs in my skillset and they are all in the big cities like Barcelona.

I would move abroad like a shot if I could get a job, persuade my wife and could guarantee the medical care but neither is likely.

I am totally disenchanted with the UK and the attutude and culture of the mass of people here.

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Been a tough week. Major anxiety for various reasons (no job, cancer worries, my entire life has been a series of cock ups) and flu. Today switched from anxiety to real deep anger. Results tomorrow. What a rollercoaster the unknown is.

Josephg
Posts: 232
Joined: Jan 2013

Hang in there Hew.

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Cheers

I know I am being weak but so many things have gone wrong for me it is hard to keep fatih in myself.

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Cushions,

I feel it as well.
I was diagnosed two years after I had upped sticks and moved to France to start a new life with a woman that I had been conducting a long distance relationship with for some time.
We were just over two years into living together with all the adjustments that involved plus learning French, etc when it hit us.
It has had a huge effect on me, I have lost that 'it will come right in the end' feeling and I have lost a lot of energy and drive.
I find that I always feel a bit down at this time of year, when the weather improves and things are really growing again life does improve.
We have daffodils and mimosa but it still very grey and cold and a long way from April.
Valentines Day on Friday, one more step into the new year!

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

I suspect late middle age has an effect regardless :)

Guess which idiot got his day wrong - it is tomorrow I get my call :)

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Cushions,

Best of luck for tomorrow, pull a below the limit of detection out of the bag!

Regards,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

0.09 "very stable" according to nurse and next test in three months.

Now for a little relief cry and a glass of malt :)

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi there,

That is very good, so the wind is set fair for France for you!

Best wishes,

Georges

Josephg
Posts: 232
Joined: Jan 2013

That is a good low number, Hew.  I'll celebrate your success tonight with a glass of red wine.

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Thanks chaps!

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Blood test yesterday. Results Tuesday. Probably the most nervous I have been to date. Fighting a running battle with negative self talk. Lockdown and unemployment does not help.

I hate PSA tests :(

eonore
Posts: 98
Joined: Jun 2017

I hear you brother.  My test results in February were good, but the negative self talk hit with a vengeance with the coronavirus.  Hang in there, and let's look for a great result on Tuesday.

hewhositsoncushions
Posts: 367
Joined: Mar 2017

It's. it fun, is it!

Georges Calvez
Posts: 470
Joined: Sep 2018

Have you got a mild case of stress induced doolally tap there Mr Hew? :-)

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Hew,

I know it gets to me too.
I have set the 26th of June for the next test, I am going to shoot up to the lab in the morning, results at 6pm or thereabouts.
It is a Friday so the cold beer will be ready!
You will be fine, no worries.

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Good luck with yours.

Im not sure I'll ever get over the stress of testing.

Justhave to suck it up.

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Hi all

 

Latest results: 0.05

 

History

 

Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

 

Nurse was pleased but seemed surprised at this large turn around. We both agreed it’s trend not numbers that counts but this looks good to bank.

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Hew,

I would say that the trend is flat, the difference between 0.09 and 0.05 ng/L is a fly fart in terms of PSA assay.
The assay itself has a considerable error and depending on the technique used you are close to the limit of detection there.
If you look at my results you will see that my latest results are reported as < 0.05 ng/L, this means that if there is any PSA there it is less than the technique can detect.
That is zero in biochemist terms, what doctors think is another matter.
So very well done, fall out that man and go and have a glorious drunk that will astonish the druidy druids! :-)

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Yes, Bla bla bla ...

This is a remission level. Congratulations. There is no reason to think otherwise. The results are real and now it is time to celebrate.

I love the red wine made in Alentejo just north of Algarve. I know you can find it at your local liquor store and I want to invite you for a drink together.

We do it pandemic style keeping the distance. Lol

Hip hip hooray.SealedLaughing

Best,

VG  

Josephg
Posts: 232
Joined: Jan 2013

Great news, Hew.

I will toast your great results tonight with a glass or two of red wine.

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Hey all

Thanks for the kind words and reassurances. I shall indeed be hoisting a glass in all our honours tonight.

Take care, stay drunk and enjoy the good weather if you have it!

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Vasco,

Sadly the French like to drink their own wine so anything non French is in very limited supply, the only Portuguese wine I have seen in a supermarket here is a rare bottle of Vinho Verde, specialist suppliers have more but not a lot.
G & T has to wait for the weekend so I will have a 1664 and a drop of Bio Merlot that I got out of the wine pump today. This is a green venture by one of our supermarkets, you arrive with your refillable bottle, fill it up with the wine of your choice, pay for your wine and off you go, bottles are reused.
Another pat on the back and a big cheer for Hew!

Hip hip hooray!

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

I just realised I have my next test in a few weeks.

I have not even thought about it since the last one. I am going to be too busy to worry between now and then.

Here is hoping it is a good one.

 

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Hew,

I mosey down to the lab when I feel like it so I am going in around September 21 / 22.
We are hiding out in Jersey at the moment having endured the CV-19 tests, etc to escape from France.
Not much CV-19 here so life is pretty normal, we will see what Brittany is like when  we get back, it will still be there as they say!

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Have been told this is well within margin of error and can be considered stable. Was offered six monthly testing but said would think about it so three months for now.

What do you good people think about going to six months?

Josephg
Posts: 232
Joined: Jan 2013

Do whatever you are comfortable with.  The frequency of testing is completely independent of what the PCa may or may not be doing within your body.

Maybe a testing frequency somewhere in the middle will make you more comfortable, and still reduce the frequency of emotional swells that accompany each testing cycle.

My Oncologist recommended a 4 month testing cycle for me, and I am comfortable with it.

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Wonderful.

You have been in remission since Feb 2019. I think we got reasons to have a Bitter. Let’s meet at your pub. Here there are yet some corona restrictions.

Congratulations.

VG

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Hi Joseph

 

I like the idea of four months. I might just ring them back and change to that.

 

Vasco

 

Thanks. I took your advice and now have a hangover. I have never used the term remission to refer to myself to date because I have always been in that "am I or aren't I" mindset. I think it is healthier to think like that now.

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Cushions,

Congratulations on your latest result.
The chance of it coming back to tap you on the shoulder declines with time post radiation but it is always there.
I reckon that you are one of the penguins at the back! :-)

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Hi George

Yes, I am starting to see it like that now.

Hope all is well with you.

Steve

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Got my letter for the next test - three months. May change to 4.

She added a check for Testosterone on top of the PSA. I never asked for it but I did honk about bouts of fatigue so I suspect that they are doing a routine check. They never tell you why they do things do they?

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

They will if you ask. Testosterone should pair the PSA at least one time each year. In any case the important is that you feel being looked well.

UK is no more requesting quarantine for those returning from Portugal. How about a trip to Tavira to relax and get the strength back.

Best,

VG

hewhositsoncushions
Posts: 367
Joined: Mar 2017

I never did ask. Guess it is just routine. I am OK apart from bouts of fatigue which I am starting to suspect are related to sleep apnoea and chronic hyperventilation. I am going to look into breathing exercises.

I would love to go back to Tavira. We had a fabulous time. The music festival was on and we had flamenco, classical, a Queen tribute act and more.

The restaurate D'gusta away from the main area was my favourite restaurant.

I just wish I had a job to pay for a holiday :( :)

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Steve,

My level of testosterone had recovered to just below the normal range in March and I think it has improved since then; more body hair growth, beard sprouting again with renewed vigour, etc.
But I still feel tired. I am eating well, I can go for long walks, but I reckon if I had to do a normal days work I would be exhausted, by the weekend I would be all in.
I am going for my next PSA test and I will do a testosterone test towards the end of September.
We are back from three weeks in Jersey. It was OK as there is very little CV-19.
We took the cat with us, she managed to catch two mice in the garden and she dug quite a few holes for cat business as well, no need for a litter box when you have a nice fresh flower bed only metres from the door.
We are back in Brittany by the sea now and it is raining but the CV-19 is not too bad down here! :-( :-)

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Had a chat with Nursey and said "can we go four months as I want to delay getting wifey wound up with my pre-test hump too often". She said "well that would put you just before December. January?". I said "You have done this before" Laughing

So five months between tests now. They seem relaxed so I am.

Josephg
Posts: 232
Joined: Jan 2013

Good news, Hew.  That should reduce the frequency of those high-stress pre-test periods.  That will be good for both you and your wife.

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

I agree with your decision. If something "out of the obvious" arises, the next sequential would be hormonal and that would work well at any level.

Let's celebrate the delay too.

VG 

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Hew,

Welcome to the weird world of remission, we both made it! :-)
Hopefully PSA tests and visits to the doctor will stretch out until they are yearly check ups. :-)
When I stopped the ADT in September 2019 I was full of plans about what we were going to do this year.
Sadly they have not come to much due to COVID-19 which has put many things on hold.
I am hoping that we will do some of them next summer, until then it is small steps.
It is going to be three for an at home Christmas, wife, cat and I, and it is likely that quite a bit of it will arrive in a big box early December.
Fingers crossed that we might turn some sort of corner next spring / summer.

Best wishes,

Georges

hewhositsoncushions
Posts: 367
Joined: Mar 2017

Sorry for the delay in replying.

Well one can hope. I am too busy worrying about being unemployed and fighting the urge to drink too much becauwse of COVID to worry about PSA tests right now :)

Our Christmas may be two, three or four people, depending on whether students and parents are allowed to "bubble".

Lets hope the COVidiots don't jeff up the lockdown with their deranged selfish entitlement!

Georges Calvez
Posts: 470
Joined: Sep 2018

Hi Hew,

We are just finishing another three weeks of isolation with eleven days to go, but they are sure to extend it in some way.
We are on a regime of being able to go out for shopping, visits to the doctor, etc and a short walk every day for up to an hour.
It has cut the rate of COVID-19 but it is limiting, so too much time on the computer or watching the TV.
The cat seems pleased with it all, both cat parents are in constant attendance for feeding, cleaning, combing, scratching, cuddling, paw warming, etc.
We are not doing too bad on the alcohol front, I have a couple of small 250ml beers per night plus the odd gin and tonic and the other half is on occasional glasses of wine. It is tempting to drink more, this is France and the shops are stacked with tempting low price bottles.
I miss going for a drive along the coast or out in the country and long walks.

Best wishes,

Georges

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