Keeping positive

Love the "panic first, then carry on".

Ps

I think the fourth letter of your post should have been an R rather than D.

Hello AH and everyone - I actually think that admitting to our weaknesses shows our strength and our humanity. There should never be shame in tears , having down days etc. Hugs this morning to all those who are struggling 

Thank you. 

It is now....

The oncologist like patients can be different. I am still a t3 diagnosis this might change after the pet scan.A lot of them rely on standard statistics ie the five year survival rate... bbc news today revealed a family history dad,grandad and also living in Scotland diagnosis and treatment varies from country and region. I hopefully will eventually get mine .I spread the word as much as possible     ...GET CHECKED! 

Hi Big Col and thank you for the post. Good that you have come out of those dark places as hiding in them serves no useful purpose. I drop into the forum most days as I also find it helps me to keep positive and although I don't know anyone on the forum, I still feel as though I have a lot of friends and they all give great encouragement. I rarely post as I find it hard emotionally. Just wondering what your PSA is now. You say re-occurrence was determined nearly a year ago but mention 6 weeks for a scan to be arranged. I'm in a different situation where it was determined immediately after my RP that the op had not been a complete success, despite the surgeon being very positive when he informed me I had clear zero margins. My PSA has risen over the two years from 0.1 to 0.4 (two weeks ago). I had been told all along that I would not have a PMSA Pet scan and no further treatment would happen until it reached 0.4. I know some medical teams work on lower readings and some give salvage radiotherapy immediately after the op. It seems there is wide variation in the views between teams. Just wondering if you are still waiting for a similar reason. I was expecting to have a scan almost immediately once it had reached 0.4. However, my specialist is going to wait it would seem until at least next year as she says the accuracy of the scan will improve.

Hi Robert1.

Many thanks I am very sorry to hear that you are in the same boat my friend.

Yes it is always best to remain positive as this makes our journey's much easier.

All the best  

Prostate Worrier.

Hello Static 

I think that's a great post.

Static said:

I drop into the forum most days as I also find it helps me to keep positive and although I don't know anyone on the forum,

We are a peer to peer support forum - we are all friends - I have been here for 33 months - yes I chat to everyone, I see your posts and I know that you have history here and I thank you for posting. - I count everyone as friends all including you, Your posts are important.  We are all bound by the same bond - prostate cancer,  - if you said "I will be in the pub tomorrow" I would make an effort to shake your hand!!

As mstev2 said we are all different - but that mutual support will get us there.

Best wishes - Brian.

Hi AFLMF,

I'm very sorry to hear about your husband's diagnosis. I agree with all you say and the Chris Hoy news also shocked my husband and he has since asked me 'has someone told you something that I don't know?' That's because I made one or two early phonecalls back in May when he wasn't well and I needed some answers from urology and a response.

The initial news is always a shock. It is heart breaking. The bad news date for us (9th April 24) will be forever etched on my mind.

It seems very variable what heath professionals say to each individual. Our bad news was drip fed to us. First we were told over the phone it was 'in the bones' and my husband asked 'how long have I got'. The reply was 'Oh I can't possibly comment on that'.

Next time we heard the cancer was in the hip and pelvis and lymph nodes.

A week later we heard it was also in the liver. Several weeks after that we heard it was also in the femur.

This gradual progression of the cancer was not as a result of extra scans. It was simply that we hadn't been given all the information from day 1. I'm not sure that it was deliberate withholding of information - as each time we saw a different individual and it didn't seem clear that they were aware of what we had already been told. Perhaps their protocol was to try and soften the fall. I really don't know. I think we were so shocked at the time that we didn't ask the questions we might have asked. Maybe it's because my husband had been diagnosed with serious heart failure one year earlier and they didn't want him to have a heart attack on the spot.... hmmm.

Several months on I would say that things have normalised for us. I try not to think too much about the cancer. We don't talk about it although we do have a chat about sleep (have we had any?) every morning. 

Please stay strong and know that it becomes easier to accept things over time. We are praying for another ten years for us. Perhaps this won't be the case and perhaps my husband's heart failure will be the more significant issue. We don't know and we try hard not to make guesses about the future. We try to focus as much as possible on the here and now and make every day count in a small way.

Hugs and kind thoughts to you both

Jenny x

Thanks Jenny

I recognise everything you have said here. Our date was a couple of weeks after you..again forever etched in my mind.

I agree with you in that you do come to live some sort of normal...I guess we have to or we would just crumple.

I think this group is fantastic and I take a lot of comfort in it,  I hope you do also.

Hugs back to you

X

Hi Amanda , I’m so sorry that your husband is having a rough time as no doubt you will too. Hope he feels more positive today . It’s so hard and  I understand Chris Hoy making a statement but to say “terminal” resonates in all our ears.  I prefer the use of a “chronic illness”  as nobody can put a time scale on when !!!   My OH turned the tv off when his name came up  as he doesn’t want to listen. He asked me  ( I read it) but replied that’s not fair as it will frighten many people who had a similar diagnosis . Treatment is changing all the time and hopefully Chris Hoy outlives the predicted.  

hugs to you both 

Liz & OH 

XX