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Ever Decreasing Circles part three

User
Posted 09 Feb 2016 at 22:57
Any delay (that doesn't hurt you) in starting a new treatment is a win I think Paul. Good news that your Onco was available and willing to fit you in, better than ours last year as we waited 19 long days to see ours when John was in severe pain from his hip met.

I hope you are managing to rest up and relax and starting to feel better

Lots of love

Allison

User
Posted 09 Feb 2016 at 23:01
Paul sounds like a plan to me,

Enza still in the box for know is brilliant news the longer that you can delay the better. Keep circling my friend keep circling (or should that be ovoiding) 😉

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Feb 2016 at 23:46

Well after the problems you had before - dismissive and too happy to let things slide - I am pleased that the new guy is on the ball and attentive. I think delaying Enzo just a little while longer is a good strategy

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

User
Posted 10 Feb 2016 at 10:51

Thanks folks. To be fair Lyn that was an isolated uro, all my other medics, Uros, oncos and nurses have been excellent.

If I continue ovoiding Julie I would be avoiding the inevitable. So I think circling remains my goal, even if last week I was in a quick spiral of decline, I am hoping it levels out this week!

If the flare diagnosis is correct things should settle, I can then reduce the strong pain meds and hopefully get a good bounce from stopping bicultimide and stretch out the time a little longer. It sounds a plan.

User
Posted 10 Feb 2016 at 11:10

Hi Paul,

I do follow your journey on here, as I do all the other 'senior members'

For obvious reasons I can't comment or offer any advice to you regarding treatments.

Just want you to know that I wish you well, and admire the attitude that you and the others have in fighting this disease.

Best wishes
Luther 

 

User
Posted 14 Feb 2016 at 10:02

When I was finally diagnosed with incurable PCa I first told my two children. They had known the cancer diagnosis but we had been hopeful after a CT Scan that it would be on the cureable side. This was abruptly ended when the bone scan revealed bone mets in a number of places. My daughter, naturally upset, confused, angry, came up from London that same evening. The following day I was due to take my son to a wedding reception. I suggested to my daughter that we find a restaurant near to the reception and enjoy a relaxed meal and chat. This was the first visit to a little place in Humberside, Barton upon Humber. We had a lovely meal, shared emerging thoughts about the future, cried, and began the process of getting our collective head around what faced us. I said that night we should return here once a year to mark the passage of time, not knowing how many I could achieve as the prognosis had been 18months to 2 years.

Last night the three of us returned to Barton for the fifth time, celebrating four years survival, enjoying probably our best meal ever and still here, still battling, still living. It also marked the end of the worst couple of weeks I have experienced, the tumour flare, now definitively in remission, just normal aches, pains and tiredness. I hope I can build up my resilience once again.

So four years on and still counting. I have said before I am not under any illusions that this will last forever. I know my circles are decreasing and I know too what Bazza calls the uncertain certainty of the end game will arrive one day. But each year I have a dinner date to remind me I am still going strong and as long as we can we will book our annual dinner, always around Valentines, always in Barton, always at Elio's, to mark the passage of time, the accumulated memories of another year. I am glad of two things here, the restaurant remains open (it is a most inconvenient journey of about one hour from home but it's just fate) and it serves good food, fancy revisiting a place where the food was poor! Appropriately valentines as I am with the two loves of my life, my two children!

Have a good day everyone!

User
Posted 14 Feb 2016 at 10:26

This post warmed my heart. You have learnt to savour and value every year spent with your loved ones . Sadly we often can't or don't do this so well without that dagger hanging over us. Long may your yearly celebrations continue. Georgina

User
Posted 14 Feb 2016 at 11:12

Great post Paul
Many rendezvous yet I'm sure. I'm gunning for you along with everyone else. Don't let your groupies down ok
Chris

User
Posted 14 Feb 2016 at 11:59

I'm so glad that you get to do this Paul. It not only marks the time for you but (selfishly) it marks the time for others on here.

A lovely inspiring post as usual. I'm also pleased that the restaurant is worth returning to !!

We can't control the winds - but we can adjust our sails
User
Posted 14 Feb 2016 at 12:15

So glad you had a great time with your family Paul. Although we have a terminal disease, you are such a positive force in showing that the terminus is literally beyond the horizon. Here's to many more Barton Valentine dinners.

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 14 Feb 2016 at 16:22

Top post. Top man.

User
Posted 14 Feb 2016 at 18:13
What a lovely post Paul I can just picture you and your children enjoying a wonderful meal together . Long may this tradition continue.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Feb 2016 at 02:22
Hi Paul,

Really hope this tradition continues for a long time to come. I can't think of nicer way to spend a day than to enjoy a good meal and a couple of drinks with your loved ones.

I hope things go better for you in the coming months.

Best Wishes,

Steve

User
Posted 15 Feb 2016 at 08:21
Paul

Lovely to hear your Barton traditional meal went so well. I hope you get to do this over and over again.

My very best wishes

Xx

Mo

User
Posted 15 Feb 2016 at 08:52

Hi Paul. Just adding my support along with your legion of fans !

 

Fiona.

User
Posted 15 Feb 2016 at 10:07

Great to hear you had a good night. Really glad to hear the pain is subsiding also

Take care

Bri

User
Posted 15 Feb 2016 at 11:10
Nice reading that you had a good night out. I have 2 daughters too and being with them when they're home is just fantastic.

I've followed your posts since joining and just want to wish you the best in these uncertain times for you.

User
Posted 15 Feb 2016 at 20:06
Absolutely heartwarming post Paul, many more meals are ahead my friend.
User
Posted 15 Feb 2016 at 21:17
Hi Paul

What a lovely post to read. Glad to hear the flare up seems to be subsiding. Enjoying quality time with the most important people in your life is wonderful.

Long may it continue.

Lesley x

User
Posted 08 Mar 2016 at 18:50

So back for the latest PSA today and discovered it had gone up to 53.75, an increase of five so not the hoped for reduction but not jumping quickly either. I was rally impressed with the discussion with the onco who took a holistic view of my situation before advising options. We decided to delay on new medication (either enzo or chemo) until I have retired. I was very impressed with the consideration towards my final weeks at work and the risks that introducing a new drug regime or chemotherapy might bring. So I have been given steroids ( dexamethasone) and some tablets to ward off any stomach problems which is designed as a supportive treatment for the aches and pains I have had. But I will only start this if my pains return and stop me working, a sensible short term solution and I am happy with that. It was a sensitive discussion and the consultant was listening!

This is a new area for me so wondered what advice/experience have of this steroid and its impact. I am not immediately going to start it. At the moment since the tumour flare, I have been a lot better pain wise though not without pain.

I had not anticipated this as a next step so it has taken me a little by surprise but I think it's a good option.

 
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