Hello Lee & Buddy (Mama Bluebird), and forum members,
Thank you for your thoughts... we are playing the waiting game now (surgery pending April 17th). Have already posted a reply once this morning (and lost the lot!!) so working with my technology skills now, and posting again tonight (6pm Sunday).
The past 3 weeks have been very hard for us - lots of appointments - frustrating in part, I guess. We ended up skipping the on-line meetings and support groups we spoke about earlier. The gentlemen we spoke with were very traumatised themselves still, and even though they were kind enough to contact us personally to assist, CJ found it "brought him down" a little at this stage in our path (pre op). We decided in the end to go back to our Surgeon with about 20 -25 extra questions. ie. just for one example:- CJ cannot tolerate an epidural (the preference for post op pain relief according to our surgeon's assistant), and is therefore going to negotiate an alterative (PCA) as he has a pre-existing injury which means the epidural is a "no way" for us. Once this is cleared up next week, and I know he will get the traditional PCA machine post op, I will feel better. We still struggle with matching our experience to the older men we have spoken with (as it still seems completely different with a young family to consider), so I have been grateful for the info posted by Courtney and Kurt (thanks guys!). Good luck with the March op & thinking of you both.
We have downloaded some of your excellent tips Mama and Papa bluebird, for immediate surgery and post op. I have booked a hotel across from the hospital; organised 5 weeks off work (special leave); organsing to purchase a reclining chair for post op recovery; stocking up on DVD's and novels for this time of rest and recovery; plans going ahead to have our son minded well away from us - for 3 weeks in the initial surgery time and post op as he is too young to be involved at this stage (will be 7 years soon). However he will be well cared for, and completely occupied. By the time we get him home, things will have settled I think. He will be enrolling in another school for that time - so it all takes quite a bit of planning at this time. We have been honest with him about his dad having a big operation, but avoided the "C" word as I honestly think he is too young to take it in at this stage. He will know all in future no doubt, as he is our top priority (along with CJ's adult son), in terms of prevention/monitoring of Pca, for the next generation of boys in our family.
Just stressing about the op now, and trying to mentally prepare. CJ is by nature a very shy person and our experience is that due to this, medicos seems to direct all their comments to me (I'm not really a loud mouth, just happens as I can speak their "lingo" when I have to!)... CJ has therefore booked another appointment this week with both GP and specialist to go to alone, and really try to develop a trust and rapport with his surgeon alone, and get them to know him. and he get to know the Surgeon, as a person ( a real person). We apparently have one of the best (surgeons) in this country, for which we are grateful, but it is all hard - terribly hard. I guess everyone knows that.
The saving grace is that I now know more and more each day, why I married such a precious man (CJ). We are at the moment, each others best comfort; best clarifier; best support; and best "buddy" and best resource in a way. The person to person, and "phone to man" support groups just did not work for us, but I honestly think it was an age thing. Different ages have different motivations and priorities. The theme is the same, but we search now for specifics....maybe that is why this forum is useful for us, moreso than our local comtacts who seem to have the Aussie "You'll be right" attitude when they find out that CJ is in the early stages (we hope and pray from first biopsy resultsn that this is so). Not to discredit the advice we have been given by older men and families (it is helpful in many, many ways), we just find our experience is different in some ways.
Lee, thank you for remembering us. I was delighted to hear of Buddy's excellent news recently with the zero PSA (Feb 07). Way to go!! And the posts which have similar good news... We are still reading and learning from you all. I also remember "lawinks" (from Texas) message to me once, that each time we post, we assist others. That is the only reason I am "venting" now. As I explained we are pretty private overall... venting and what we see as "dumping" on others, is not usually our way.. but I trust you - if it helps others to share, then here we are with you all!!! As hard, as complex, as complicated, as scary - yes, we do experience it all.....
Finally, may God bless us all here, as well as our families, our sugeons, our pathologists and our friends. Will post an update on CJ's epidural and pain management post op options for discussion and comment later this week, once CJ has had a good talk to his surgeon.
We have had good times and bad times in the last month, but overall just the process of grief and adjusting to change. Nothing different to others I am sure. Thank you for the rainbow Lee! I am absorbing it, and feeling the rainbow (colour, music, hope, faith).
Be assured that each time I look to heaven to support our needs, I also think of those posting here with exactly the same needs, and think of you especially (Mama Bluebird & Buddy) - a chirping rainbow over us all!' Thanks for your useful and practical tips on how to manage it all.
Kind regards and good wishes for each and every indivdiual recovery. I will be in touch soonish.
Lana and CJ
Husband diagnosed 8/12/06 on his 49th birthday. 1 (5%) core of 12 positive. Gleeson 4 + 3 = 7 according to biopsy. Routine PSA (Nov 06) 3.5. Awaiting RP (open) scheduled 17th April 07.