Hello jilly and welcome to the site.
As Allison says, the Toolkit is a must really as it contains so much information. If you have questions then apart from us you can approach the nurses on here during their hotline hours. Tel: 0800 074 8383.
This is a real roller coaster ride you are on. Things look very black to you at the moment, but serious as your fiance's situation is, there will be other members on here to advise you because they too know what it feels like to get that diagnosis.
We have all, to a greater or lesser degree (those of us in the curative camp for instance) been where you are now and have felt that fear too.
I don't have experience of metastatic PC or the treatment for it but many do and I'm sure they will be along to offer help.
The only thing I can think of initially is that for the men in our lives who are on HT, you have to be prepared for them to become a bit emotional as that is how the hormones often affect them. He might be snappy, he might be tearful, but he might have no side effects at all!
When he is attending appointments go with him if he'll let you and take a notebook and pen as there is a lot to take in.
Best wishes
Sandra
Edited by member 02 Mar 2016 at 14:43
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi Jilly
I can only reiterate what has already been said.
It's important to prepare for your meetings with Oncologist so if you think of anything at any time, write it down, as it'll go straight out of your head when you actually see the Onco!
It's a rollercoaster journey. My OH has advanced metastatic with mets to pelvis, spine, ribs and sternum but we're 3.5 years into treatment now and he has just started a new treatment.
Take care
Glen
User
Thanks for your replies. It helps to know that there are others that can offer support and advice - although I am obviously sorry that you are all going through this. x
User
Hello and welcome from me too.
Your situation will unravel in time. And then you will know where you are and what is ahead of you.
All I can say is that there are many of us here who have been through the different stages of this disease. Amongst us we all have experiences which hopefully can help you when you need it.
It's important to keep your nerve and not jump to any immediate decisions . I thought I'd be having surgery but that wasn't possible for me though.
As said above prepare yourselves before any appointment .
Just keep us posted . I know we will all help you as we can.
John
User
Hi Jilly
This is so difficult because everyone is different , the disease and how we cope is so varied, great advice from Alison about the toolkit is fab , writing things down when you go for appointments is also another good tip.
If I had to add to your situation then never give up hope, there are so many new treatments know, we are nearly 3 years on from diagnosis with ext mets , lymph node and kidney involvement and a PSA of nearly 13000.
When they said to us always have hope I could have laughed in there faces but it is so true.
Keep going , keep posting there is so much support and wisdom on here.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Jilly,
Your fiancée condition sounds wee bit similar to mine. Gleason 9, high psa, mets but don't have nodes. I've been do since May 2015 and having HT and just finished chemo. All I can suggest is keep using this site as a sounding board as you get lots of good advise and help.
When in any meeting i found it a good idea to record the meeting on my phone, I did ask them before at the start and they all thought it was a good idea. Very helpful when you needed to go over things.
It was a shock at the start, worrying throughout and although don't know what's ahead, just keep positive. I've had a relatively smooth ride and aim to be around for a very long time. The condition has really affected my life as much as I thought!
Good luck with the next step.
User
I think a good tip for anyone with PCa is to try to exercise as much as you reasonably can, clearly not over doing it or beyond medical advice. I remember someone who was a member (Old Al) for whom regular swimming radically improved what he could do and quite likely extended his years.
Barry |