Chris J's Journey

On a lighter note , can 4 days of Bicalutromide knock you flat on your back for 3 hrs , or was it 3 pints of St Miguel sat in the beautiful New Forest sunshine , after nearly the worst week of my entire life ?

Absolutely torn with what to do us both ( Chris and El ). We now 60/40  non-surgery / surgery .

Kind of wish I didn't have the choice anymore . It is Sooooooo tough. Enjoy bank holiday everyone

Chri J

Hi Chris and El,

Meds and beer may take it out of you, but stress is also known to make one very tired and prone to sleeping. And you are probably stressed at the moment, handling it as you normally do, but still feeling it.

So, choosing the best of the bad?

FWIW, and I am no medical expert and thankfully I have very limited experienced and knowledge of PCa unlike many here, so I am lucky, so far, no one can really say what is the best treatment. If they could then all the others would be unemployed.

As I understand it the earlier you get diagnosed and the fewer symptoms you have the better your chance of recovery, or continued long term remission?

The specialist will all promote their specialism, in my experience. If you base your decision on what you read from members here bear in mind that you are only reading a fraction of all those men who have been where you are now, where we all have been not so long ago. Also bear in mind that with few exceptions mainly those with issues will be prominent here. I suspect that the majority of men fade away quietly and get on with their recovery? Lucky things.

Which ever choice you make, bar in ind that the range of side effects listed are just that "a range". And there may be other side effects, you may be the one in a million that cops it, or you may be the mango the many who make a full and complete and marvellous recovery. Sorry if this sounds confusing or grim, but the more you know about the after math, the better for you to be able to choose wisely.

When you go for your final meetings before deciding perhaps you would ask what other treatments may be available if needed later, back up treatment? Find out if any treatment option is off the table after your initial choice has been completed.

Take a notebook and a pen with you and someone to write and listen for you, you will be surprised what you will forget when something is said, especially if it is serious, the next few words tend to get lost in a fuddle of blur.

I hated being where you are now, and once I made my choice I went for it full pelt, no looking back. And try to not et worrying about tomorrow soil your enjoyment of today. That is one thing, those of us further along the journey", what a parc term, have all learned to a greater or lesser degree.

atb

dave

Damn it Sandra you started the tears up again -- and I actually thought they had completely dried up .
Very kind words and thanks Dave and Luther for taking the time for me.
It really doesn't help that ive suffered depression for 23 years and am bi-polar . My self -esteem is critically low at the best of times, and I find the things in life that bring people pleasure so hard to do . So yes its going to be maybe even harder because of my stupid head. And my poor poor wife having to put up with this aswell. Im not so sure we are strong enough for the times ahead , but have been advised that actually we are .
Wish hubby a happy birthday and first anniversary Sandra . My birthday is 7th June . I'll be 48 . it will be tinged im sure .

My husband's Brachy anniversary is 3rd June.
It would appear from his latest PSA that the treatment is/has worked.
He will be checked for the next 5 years which he says will do him as it makes him getting on for 80!
We shall certainly be celebrating with a glass or two of wine. ! I might even buy him a good bottle of red instead of expecting him to drink my home made white. Now there's love for you!

As for your "Stupid Head" and your "Poor Wife" well you are very attached to both and I'm very sure that if she is prepared to kill you if you don't accept treatment then she is well able to cope with the future, even if she will sometimes feel like kicking you too at times.

You are aware that you have mental health issues and that may make it difficult for you. Make yourself (and your wife) a promise that you will always take whatever medication is necessary to help you along the road to recovery.

And yes, you WILL be strong enough for the times ahead because you have to be.
Take it all one step at a time and please, If or when you need help because it's all getting too much, ask for it before it gets out of hand.

Best wishes
Sandra

You are doing a brilliant job staying chilled enough to imbibe the San Miguel

You readily acknowledge your BP so that is a really positive thing as you will recognise when doubts and worries start to over power you. I am sure El is fantastic support too.

Take all the informative support from those posting nurture these contacts because once you have decided and started treatment you will always have us here to chat with.

In Bruges today and I don't drink beer but I will think of you when friends have one and say cheers and good luck.

Xx

Mo

Hi Brian
Thanks for your time. Had a bit of a relapse mentally last night where I was shaking "internally" . Vivid awful images involving me etc etc . I remembered that I had been in that state before . I am fully medicated up for my Bipolar and always take my pills . My Psyche is fully aware of what is going on , as ive already had some BIG wobbles . It has left me fearful of how I will cope in the near future , and which decision will be more "mentally Friendly" for me . I personally don't think I will be able to cope with what is ahead . Im not just saying that for sympathy . Ive been like this for 23 yrs .
Apparently my surgeon is the bees knees with loads of experience , and helped pioneer the robotic stuff . He said it would be laproscopic and that he could deffo spare the nerves due to the position of the tumour . Its bloody annoying as when I saw Onco I was Sooo relieved I didn't have to have surgery , but now we are slowly edging back towards it due to my estimated recovery time , and expected success etc . I am obviously shallow , as the only thing about the surgery that bothers me so much is the sexual things . Ill be honest -- im terrified of the whole shorter penis , no ejaculating , weird orgasm thing ? What the hell is that all about ? For the rest of my life .
Oncology choice just seems nicer , but then 3 years of feeling rough , and then eventual inevitable impotence and continence problems .
Felt very ill last night as I sais and that's not a good sign . Maybe some more San Miguel ?

Hi Chris,
just to be clear - whichever treatment you end up choosing, the impotence and incontinence are not inevitable. And the PSA score does not directly correlate to the severity of your disease; if it was that easy the doctors would be able to group men into treatments based on their PSA rather than waste money on all the additional tests, etc. There are men with advanced disease whose score was less than 10 and men in the 100 - 130 range with no spread. The highest recorded PSA result our uro ever came across was something like 160,000!

What I would say (based on a husband, father and father-in-law) is that it is essential you choose the treatment that gives you the best chance of getting rid, rather than opt for the treatment whose side effects seem most manageable. My husband was 50 at diagnosis and would have had brachy if it had been available but it wasn't. He opted for the op at which point they realised it was already in his bladder so he ended up having the RT/HT as well. If he had understood that the surgery might not get it all, he would have gone for RT in the first place. He is now happily chugging along towards official remission :-)

Just out of interest, did the rise from 34 - 43 come after the biopsy? It could be a bit of infection.

Thank-you Lyn for getting back to me, I appreciate it . And all comments the last week well taken on board and I think they are massively going to help make a decision later this week . I genuinely cant thank people enough for their kind and factual input to both my posts.
Lyn no my PSA wasn't after a biopsy , but I take your point about " higher isn't worse " - I think its the alarming rate of climb which is important . I took the time to read blog of your husband and his op and your story . It was important info for me thank-you.
Maureen thanks for replying again with your comments . The silly thing is that El and I agreed if anyone can probably adapt sexually then its us !! I wont add detail to that haha.
El and I actually get to have a whole day and night together today -- something we never manage due to no parents around etc. But friends have rallied round to make it happen . So lucky us .
Its strange that surgery was the worst thought in the whole world , yet I might be slowly getting drawn back towards it . But im hopeless at making decisions . I think I already said that ! Any way for 24 hrs starting now im not even going to think about it !

Chris x

Not rambling Chris, San Miguel or not.
You are expressing your thoughts on today's events. San Miguel may be in the background but he can't make any decisions for you can he !!

The choice - no choice- well as you say it's been made.

At 48 you have many many years ahead of you. It may be a different life but it will still be an interesting one.

El is there by your side. She is fully aware of what the consequences of your op MAY be.

You can tell from the operation results of the men on here that not all are the same. Some are far worse than could have been expected given their original scores, some are better off than they ever thought they could be.

Keep focussed on your wife, your little lad and the fact that you want to be there for many years to come, to watch that little fella grow up and make you proud.

I can't comment on your bipolar mode except to say you are very aware of how it affects you so hang in there until you can come out the other side.

Best Wishes to you and El Chris.
All the best
Sandra