Ever Decreasing Circles part three

Ok oncologist check up today and I saw yet another one in the team, this time a man! Bad news is PSA has begun to rise from a steady state of mid twenties up to 38 which takes it back to what it was like a year ago when I started casodex. So the casodex journey is over, the onco considers me as hormone refractory. Bit of a blow just before Christmas but not unexpected. I am having a CT Scan and further PSA to create a baseline before enzalutimide starts in about five weeks. Enzo chosen because of my diabetes. Xmas slows down the CT scan process so a short wait but PSA has only returned to what it was a year ago so I do not think a few weeks will make a difference.

I suppose I was expecting this with some increased pain in the last few weeks and increased tiredness and he has given me some oramorph if the pain returns. At the moment when I rest well it's not too bad but I got too tired at the Euston Flyer and the discomfort of the seats led to a bad reaction and I really had a bad week after that. I could have done with better pain relief then so it's good to have some in reserve.

So can I wish everyone a great Christmas wherever you are on your journey. My circles have narrowed a bit more but let's hope the new drug will give me a back in the new year.

Thinking of you Paul and hoping the pain becomes manageable, especially at this seasonal time.

Christmas makes everything so much worse doesn't it, and yet the situation is the same.

As you say, your circles may be decreasing but the ripples on the pond that reflect your journey with PCa can only have inspired others given your determination and optimism in the past. Indeed, into the future too since you are already thinking in terms of a new year.

Best Wishes and as Happy a Christmas as you can have with this hanging over you

I am saddened to hear this but not at all surprised. You looked to be in significant pain when you came for dinner the other Sunday.

Talking of pain, the theory in the hospice is that once the pain gets a hold it is really hard to shift it. The consultants there advise patients to ask for more pain relief if the pain reaches a level 5 on a 1 to 10 scale.

Also be mindful that once oramorph is opened it has a fairly short shelf life (90 days rings a bell)

Our pharmacy used to dispense it in smaller bottles when Mick first started using it.

I know you well enough by now to know that you will just carry on as you always do with amazing fortitude and a significant dollop of stoicism.

All my best wishes

Xx

Mo

Sorry to hear about your latest development,your calm attitude to the situation never ceases to amaze me. I know you will have a good Xmas and I will raise a glass to you on Xmas day.

Love Chris and Dawn

You have responded well so far, I hope the enzo is long-lived and without too many side effects.

Have a wonderful Christmas my friend xxx

I'm so sorry to read this, I was hopeful you'd get longer on Casodex but John only lasted 3 horrible months and yet 2.5 years on Stillbestrill - there's no rhyme or reason sometimes is there? Rest and pain relief is part of the answer, I know your enquiring mind will be reading and enjoying some down time after so long working, not many men make it to four years and working with advanced cancer. I'm pretty sure the Enzo will give you significant relief my friend. Here's to a lovely festive season, surrounded by family and friends.

Much love

Devonmaid xxx

Edited by member 08 Jan 2016 at 18:39  | Reason: Not specified

We do feel for you, Paul; Tony's cancer started romping away beyond the reach of hormones by October. At this stage the pain had returned and was getting quite severe. He had been taking various analgesics in a rather haphazard, as-needed way, but eventually phoned the GP who was great. She prescribed Solpadol (paracetamol plus codeine) plus ibroprofen, four times a day, no messing about. Within a day or two he was pain-free.

He started Enzalutamide, but continued taking the pain relief for a month more, until he was sure it was working. When his PSA went down again, he phased out the painkillers and is still pain-free. He had a few nights when he felt a bit strange and jumpy, probably because of stopping the codeine, but that was brief. Today he is in the middle of shifting two tons of gravel from our gate to the far end of the garden by wheelbarrow (not all today, this is a work in progress!). He doesn't have the energy he did, and needs to sleep more, but we can live with that. Otherwise he feels and looks well, and is enjoying his food and drink. We know we're on borrowed time, but that will do nicely for now and will at least allow us a Christmas that is something like normal.

I hope the "magic beans" work as well for you, when you get them In the meantime, be kind to yourself and keep taking the tablets to stay on top of the pain.

Marje

Thank you, Mo. The support and understanding on this forum, from you and others, has been really valuable to us during this last 15 months, and I'm sure this will continue in the difficult times ahead. But for now, let's all enjoy Christmas in the best way we can.
Season's greetings to all,
Marje

Thanks everyone for your kind messages, I am feeling ok really. It's just another keg of this journey. Thanks too to Allison I seemed to jumped a bit in my journey but you are right I have had four great years working and this year will be retirement and new opportunities. And let,s hope I can report back in 2017!

No need to say put it to the back of your mind I know you to well it's in the back of your mind out the door and down the road

Have a great Christmas mate and look forward to seeing you in the new year

Si ness and the girls