Have you received wellbeing coaching?

I am 18 months post RARP.I attended a well being session last week ,it was organised by my local hospital.A very good session ,very informative.To be honest it would have been more beneficial if I had it available much earlier on my treatment.

Regards

Swannie

I am afraid there is no joined-up thinking almost for any treatment in the NHS. Consultants may see you a couple of times before your treatment and once after. Then nurses and others are supposed to support you. There are lots of cracks in the system for patients to fall into and suffer in silence. I had my prostatectomy in one of the supposedly top London hospitals. The consultant was as helpful as he could be but aftercare was abysmal. No advice or pads given on leaving the hospital; my catheter was quite leaky. The catheter was removed, five weeks later, in a nearer private hospital and that night was the worst one in my life: I was totally incontinent, no pads - only toilet paper - and in the early morning a kindly Rumanian nurse went to the maternity unit and helped me to put on a giant nappy. My room looked like a war zone with smelly tissues on the floor. The nurse apologised because she wasn't allowed to pick up the tissues. That was 15 years ago. I wish I had my treatment in an NHS hospital but than I couldn't have chosen one of the top surgeons in London. I had private health cover.

Edited by member 20 May 2026 at 22:43  | Reason: Not specified

I haven't had wellbeing coaching, but I did get some Cognitive Behaviour Therapy about 6 months after having my prostate removed in a non nerve sparing operation. The therapy was very valuable and helped me to come to terms with all the changes especially the loss of my ability to have erections. My main criticism would be that my wife was not allowed to join in and I so think that would have helped even more, as we go through this together.

I am currently facing more treatment as my PSA has climbed to 0.21 and I also have a carcinoma on my face that is due to be removed on 28/05/26. I have been offered no support from a wellbeing point of view, bar a good talking too by my wonderful wife. I needed that talking too as I had slipped into a dark place. The talking too worked as I am now back and finding the joy in every day!

Hi Sannie, Pratap, Paul, Antoinette

Thank you so much for your answers. Your testimonials confirm my conversations with different patients who are going or went through prostate cancer.
I know that MacMillan Horizon center in Brighton is providing counselling and coaching to patients post treatment which is proving very valuable. I heard another hospital in Norfolk is doing the same. There is limited information about coaching patients with or post cancer and I am trying to identify centres that are offering it.
When I went through my treatment at UCL Hospital ten years ago I had good advice from the clinical nurses and received CBT.
Since then I spoke to a couple of Life with and beyond cancer managers who try to provide information but no formal coaching.
Obviously there are prostate cancer support groups (See Tackleprostate.org) but they are not providing formal coaching support.
The NHS does need to understand the benefits for patients of an ongoing support for wellbeing and dealing with the implications of having gone through the diagnosis and treatment beyond the CBT that some trusts offer (but not all). 
If you are willing to discuss further and happy to talk, you can reach me on my email [email protected].
Thank you for your insight. 
Bruno

Edited by member 22 May 2026 at 14:40  | Reason: Not specified

Thank you CeePee for sharing your experience. I would like to approach UHB.

Do you know who contacted you for this wellbeing workshop?

Thank you.

Bruno

https://www.uhb.nhs.uk/services/cancer/patients-and-visitors/living-with-and-beyond-cancer/cancer-information-and-support-service-ciss/