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Husband just diagnosed and we are both very frightened.

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Posted 6/20/2012 11:04 AM (GMT 0)
Thank you so much for your replies. I did not receive an automatic email that there had been a response to the thread so that is why there is a delay in replying. I am really grateful for the lengthy reply BillyMac, you explained the system very well. Peter had his scans today and the staff were very nice with him. I always worry when he has to go in somewhere himself, with him not being able to speak properly. However I was sitting outside the door and I could hear him laughing as they were having a bit of a joke with him. He had the CT scan in the morning and in the afternoon we went back for the body scan. He slept through that one whilst I chatted with the operator! I have the films but I have left them unopened until next Thursday 28th when we meet a radiologist oncologist from The Alfred.
Since last Thursday I seem to have just thought non stop about PC day and night. I don't know what is going on in Peter's head, but I am sure it is constantly on his mind as well. Peter was always a worrier so I can't think that's changed.
Bronwen Matheson is an oncologist at The Alfred but she consults at other hospitals, where they have satellite clinics. I did find out today off the radiologist doing Peter's scans that Frankston Private is brand new and all the equipment is state of the art, and that is where Peter would receive radiation should we go with that treatment and this oncologist. We also have to find a new urologist as that other one is definitely "off the bus".
I have to admit to having been completely bowled over by this diagnosis, so much so that I had to visit the doctor today for the first time in years. He said my blood pressure was high. I laughed and said if you take it when I am really feeling stressed, then it must be off the richter scale LOL Our GP is very supportive and we are both very happy to have found him. We have only been on the Mornington Peninsula for three months and this is our third move in 18 months! Now I don't even bother unpacking most of our things and the garage is full of boxes! One minute I want next Thursday to come quickly and then the next minute I don't!
I really want to thank each and every one of you for caring and for the information you have provided. I will let you know Peter's results from the scans as soon as we have them. Kind regards Carole (Picco was my husband's nickname at school and at work).
PS I have started a journal so that I have all the information at hand. I did this four years ago, and it proved invaluable.
Posted 6/20/2012 2:08 PM (GMT 0)
Picco,

My husband was diagnosed in April ... after a biopsy and CT Scans, bone scan's ect.  He had a PSA of 177 and the biopsy showed a high of Gleason 9 (5+4).  Surgery is not in the cards for him either, not because of any condition, but because the cancer has spread out of the prostate.  He is on hormone shots and casadex (sp).  His PSA was checked about 3 weeks ago and it is down to 3.44.  So, that is working.  Hang in there - as others have told me - enjoy today as we never know what is going to happen in the future.

Posted 6/21/2012 3:41 AM (GMT 0)
Carole, I am sure there are ways to control your blood pressure - maybe a massage and time in a hot tub?  :-)    Seriously, that was one thing we have often discussed.  We wives, partners, and daughters get so involved and upset that we let our health care go.  However, we DO need to be in good health to help (and take care) of our guys!  Great idea about the Journal!

Debbie, so happy to hear your husband's PSA is going down!  YAY!  You are right about enjoying each day even when there's not much to be happy about.  We have found our young Grandchildren bring things into perspective.  For us, the laughter of the children highlights our day.

Much blessings to all,

Aimzee

Posted 6/21/2012 7:14 AM (GMT 0)
I have decided to stop reading the books about PC because I think this is what is helping to push up my BP. Last night I was on YANANOW until very late reading about diagnosing and staging. It was all gobbledigook to me and I thought, I could have spent my time relaxing with Peter and forgetting about it for a while. This is not "ostrich - head in sand time" at all, it's just that I am getting myself more and more scared reading the books. I have learned from this site that the most important thing is to make sure you have the best doctors who are specialists in PC and the best equipment for the treatment you decide upon and make sure that you get a second or third opinion. So that is what I am going to do for Peter. Get him the best people in the best facility I can. It is no use my stress levels rising even more, reading about some things that may not affect Peter. I have to remain positive about this illness, as I did his last one. One thing I did learn from Peter's last illness was to get on with life, don't put things on the back burner. On my 60th birthday I spent the day sitting next to my husband's bed where he lay in a coma. Unbeknowns to me, Peter had booked for us to spend a week in Venice, a place I had always wanted to visit. My son told me about the planned surprise trip, which he had had to cancel. I whispered in Peter's ear, "thank you so much for the trip darling". A couple of hours later whilst my son and I were talking to Peter, we saw the slightest flicker of his eye lid but never told the staff, because they were so negative regarding Peter's chance of survival they would have poo pooed it. That was the best birthday present I could have received. The following day at 5.15pm. Peter opened his eyes and I was ecstatic! To me he was now on the path to recovery. Against all the odds he survived a massive bleed, complications of DVT, septacaemia and pneumonia. The will to live is a very powerful medicine. It is a week since we got the diagnosis of PC and my insides have just started to calm down a bit. Hopefully, I will still be calm after the oncologist visit on 28 June LOL. Peter and I know we are not alone in this. I read the posts to Peter. One person, sorry can't remember who it was, suggested that Peter type if he can't speak. Unfortunately, Peter is able to read words but not write them. Must be another part of the brain.
Posted 6/21/2012 8:28 AM (GMT 0)
Carole, you and Peter have been through a lot.  Praying for peace of mind as the time will surely seem to pass very slowly.  Peter is quite lucky to have you as a caregiver/mate.  Take care!

Peace,

Aimzee

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