My torment goes on despite all the support on here.

Hello Alan (Al985 ) 

I understand where you are with this - just a few observations from me:

* In your profile you stated "I was desperate to get the cancer out of my body ASAP". Did this not influence your choice of treatment?

* I know at the start of a cancer journey, we know little or nothing about it. When I was told I had Prostate Cancer I said, "yes I have seen the publicity - i in 6 OTHER men get it. I know lots about it now.

* The NICE guideline for dealing with Prostate Cancer are HERE. What to tell the patient and all the failure rates are there for all to see.

* You are doing what you need to do about your surgeon to protect others - it's not revenge.

* Help is available for your mental health - please seek the help that is available.

* You have a new oncologist. She's aware of the past - you are moving forward with her. Make sure she's aware of everything to do with your prostate journey and you will be fine.

I hope my observations help, you have my support and if I can do anything for you please do let me know.

Kind regards - Brian.

Hi Brian. There is absolutely no point in trying to fib. The fact is I have totally lost the plot. I will admit I enjoy a gamble. I go to the races. I love a night at the casino. I play games on my phone. However the one thing I will not gamble with is my health. You are correct when I say I wanted it out on my body but  if I have been told there was a one in five chance It was going to fail within the first year.I would not have gone with surgery. Every person I spoke to along the chain told me my treatment was curative, failing after eight months is not the idea of being cured. I know there are lots of people on this s forum that are in a much worst position than I am so perhaps I should stop moaning.  I certainly missed 1 in 5 failure rate in all the research that I did do. So I suppose, really, that  that lies with me.   I do have a psychology/ counselling session booked for next Tuesday so help is on the horizon. I also have a holiday booked for the fifth of june, and the consultant has arranged the to see me  before. I go. My wife did suggest putting the holiday on hold but she insisted that we go, she said it will help the pair of us. Whilst we are away she said she will organise the scans and my planning meeting. If, of course, my p s a has reached the magical 0.1, which she expects it to do.

And the sooner, the treatment starts, perhaps the better.

Kind regards.

Al 

Hi Al985

It’s Wayne here from Macmillan’s Online Community team. I saw your post and wanted to offer some additional support.

I’m so sorry to hear that you are struggling with your mental health. It's understandable that you're finding things difficult after your cancer diagnosis, especially when you feel that you haven't been supported by your medical professionals. I hope that you have a better experience with your new oncologist.

We would always recommend discussing how you are feeling with your GP or medical team. If you need help and it’s outside of your GP’s opening hours, please call the non-emergency NHS 111 on 111 for England and Scotland. NHS Direct Wales on 0845 46 47 if you are from Wales. If you’re in Northern Ireland, you can find details of an out of hours service here.

 Additionally, there are different charities that can offer guidance and support with your mental health in mind:

• Mind is a UK-based mental health charity, which you can call on 0300 123 3393 or text 86463 for mental health support.
• Hub Of Hope is the UK’s largest mental health support directory. It’s a great way to locate services which are best to serve the help you need.

If you would rather speak to someone directly, we have our Macmillan Support Line when you want to talk things through with someone for advice, emotional support or even just a listening ear. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00. If you would rather speak to them via message, you can also do so via live webchat.

I hope the above information is helpful. If you need any assistance using the Online Community or need some additional support, please don’t hesitate to email Community@macmillan.org.uk or send a private message to the moderator account.

Hi Alan 

as a wife of a husband who went through the wringer by a very untruthful specialist  prostrate nurse . We get why you feel pretty vulnerable with a new consultant . 

it took us to our third appointment to put out trust in him. We now feel more at ease , can talk openly of why we felt vulnerable with the first medic. We can ask anything and he is open and honest and to be frank very supportive and on first name terms .

It might be that you put all your cards on the table with your new consultant . Fully explain why you feel the way you do .  No doubt the new consultant will help you get through this very big blip. 

you and your wife need to trust someone who can work with you in a manner that suits you all.  

due to the actions of the 1st nurse we both attend our local maggie centre and receive counselling. This helps a lot. 

best wishes to you both  & sending hugs 

liz & OH xx

All I can say Al985, is stick in there. I too was and still am bewildered. Although the information I have been given is going in the right direction. Please stay positive. GedExe

Hi Al985 , I want to start by saying that I don’t believe looking back helps unless you want to learn from an experience.  You feel you have been wronged and I can fully understand your regret at being tricked, but my friend, you have to put yourself first and move forward.  The only thing that matters now is to focus on a curative option.  Dwelling on the past is already having a detrimental impact on your health.  You must be in the best physical and mental health to help your own body fight this horrible disease.

I hope you don’t feel I am being unsympathetic but for your own good, take holidays, enjoy life and give yourself the best chance.  Try and get information on any options available and take time making your decision when you have all the facts.  Good luck with the session on Tuesday and keep in touch.

Hi Wayne.

I feel so weak. I worked for 49 years as  mental health nurse so you would think I should be able to manage my own thoughts and emotions, but I cant. The system as changed ay my GP's and it is almost impossible to see the one GP I trust. There are 3 others in the practice but each of them denied my request for a PSA test each using the false positive/ negative as the excuse. I eventually got a locum to say yes. He does 1 day a week but you have to go through triage to see him. So far no luck.

It is good that this forum exists, it has been there for some of my worst days.

Regards

Al

Hi Al,

It’s Megan here who works alongside Wayne as part of the Online Community team. You mentioned the forum has helped you on your worst days, and I hope you will continue to post here when you need some peer support.

Do you think you could speak with your new consultant and be open about the experiences you have had with the previously? That way, you can have a place to be honest about your thoughts and feelings in regards to your treatment options from the start.  

If you need some additional support, the Information Nurses and Cancer Support Advisors are in the Ask an Expert section of the Community. You could speak to them about accessing support for your mental health and obtaining information about treatment options.

I hope you don’t mind me saying that it takes strength to ask for support, and I'm glad you have found the Online Community. Hopefully, some of the information shared with you can help you access the support you need right now.

Thanks for your support. At times this forum has been a godsend. I only hope I am strong enough soon to offer the support I have received.

Al

My problem is the comments from the surgeon about some of the oncologists being and I quote " useless" This isnt a good thing to hear. I struggle to understand why he would say this. I considered asking my GP to transfer my care to Leeds or Manchester but the logistics just wouldnt work. He has overstepped the mark on this comment.

Not sure I could tell the oncologist what he said .

Warm regards

Al 985.