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Wife dosen't want to hear about it, PART 2

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Posted 4/15/2013 3:23 PM (GMT 0)

      I'm starting this new thead to reach those of you who posted on my first one who might not read this reply at the end of it.

      I do thank all of you who took time to reply. I thank you for all your suggestions and your words of incouragement. I have read all of them everyday since.

      Some of you suggested I meet in some type of group.

      One of our local hospitals has a meeting once a month for prostate patients. It ranges just like in here from those who have just found out to those who went through it already.  I have been going to it since 8 weeks after my surgery.  I have gotten alot of support from them and alot of info also.

      BUT

      Last month I brought up the fact that it seems that it is always the same group of men meeting. Why are  they not reaching more. There have been only 3 or 4 new people in the year I have been going. I had an old friend find out he had prostate cancer and on my last visit to my URO the guy checking in in front of me was there for the first time.

     Why was I not told about this group when I first found out I had prostate cancer? Why aren't the doctors at the biggest clinic in town letting others now about this group? Why is only 1 of 3 hosptials in town advertising this meeting.

     The answer I got was unbelievable.

     The doctors are afraid that they are giving out medical advice at these meetings and NOT sharing thier problems, experiences and help answering thier questions.

      That is why THIS FORUM is such a blessing to all of us and anyone new that comes her.

      I hope someday I can really help someone else like you have helped me.

        Thanks

     

Posted 4/15/2013 4:56 PM (GMT 0)
Wessy,

You have such a valid point! I have been asking the same questions and even wrote in Healthglades which is a Dr Review website .I was not even given a phamflet or any type of help what so ever to cope . One of my daughters friend who had PC told me about this and It has been the most help .I am doing what I can to spread the word about HW and have joined other groups as well ,it is up to us to keep this ball rolling and ask the Uro's why over and over where is the support , Look at Breast Cancer ,They have so much help and awareness it is unbelievable ,but it is because of people that have been relentless in fighting it. My health insurance called me like 9 mos after my diagnosis and asked if I needed a nurse or help , I'm like where have you been? They got interested after about 280K in claims and then called . There are prostate cancer sites and
charities out there we just need to do more .Here is one I got from here last week that I hand not seen before http://www.ustoo.org ,check it out.
Hang in their bud and it is ok to practice with your pump , and keep it up .
After all it is therapy and Dr recommended .

Gams
Posted 4/15/2013 6:32 PM (GMT 0)
Wessy:

I'm gusessing that the majority of men with PCa do't want to dwell on it and choose to move on. Also, many men don't know of available groups and/or don't have one nearby.

I know my town which is fairly large and has a big hospital has one meeting a month. I've never been as I prefer the anonymity that a site like this provides.
Posted 4/15/2013 10:26 PM (GMT 0)

Guys,

 

I too in the beginning wanted the anonymity, and probably was a bit shy and frightened of attending a meeting of fellow suffers.

 

However, after a time I wanted to learn more about this horrific disease. I decided to bite the bullet and attend. I now attend every meeting. I am so glad that I do because I have learnt so much in the 18 months of attending. I was given very little information by my urologist when I was diagnosed I have been able to fill in lots of gaps. At our meetings we have a Doctor ( urologist, oncologist, pallitive care, etc) come and give a 20 minute or so talk about one area of expertise. I have found this so encouraging and enlightening. And then there is a short question and answer time at the end of the talk.

 

Attending these meetings I was also able to find support for my depression.

 

The problem also seems to be getting the message out to our fellow sufferers and encouraging them to attend. Unfortunately a lot of men do not discuss their medical problems and choose to keep quite. I have been a lot more vocal and ask guys who I come in contact if they have discussed PC with their Doctor. This has resulted in numerous replies of NO, and subsequently a visit to their Doctor.

 

I think the PC community has been very slow in getting financial support from the Governement for research, education and support for PC sufferers. We need to get organised better, look at aout sisters with Breast Cancer. 

 

I have found this forum to be very good, it has certainly answered a lot of questions I have had, and informed me about SE's and other reactions, as well as peoples person experiences with different treatments.

 

Thanks

Posted 4/16/2013 8:59 AM (GMT 0)
Davidg, I think you are on the money. It has surprised me how many men I know have had PC. Had no idea before but once I had it, I am learning of friends and coworkers who have been where I am. I really do think we men are a lot more private ( I know I am) and like you say choose to move on. Fortunately we have a community such as this one to lean on for support.
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