We are just innocent men! Prostate Cancer and Men supporting each other

Some of you will know that I was diagnosed with a rather rare form of prostate cancer earlier this year – I have now completed 20 days of radiotherapy … I have no idea if it worked or not. This blog is not about poor me! I want to share one of the things I learnt during radiotherapy and the action I took – I want your responses to that!

Just before I press on I just want to say that in response to my diagnosis one of my sons is running the London Marathon next year raising money for Prostate Cancer Research – it would be great if you can support him – the link is here.

ANYWAY!

I had radiotherapy for prostate cancer and the treatment finished a month ago. During that time the following thought occurred to me.

There are three key players during radiotherapy for Prostate Cancer.

• The fantastic technicians who manage the process and make the machines work.
• The incredible machines that scan and irradiate us.
• Us men who are being irradiated.

I want to talk about the men.

The NHS rightly focusses on ensuring good clinical practice however it fails to recognise just how important patients are – both individually and collectively.

During my treatment for a period of time each day (about 40minutes to an hour) I was part of a group of men who together were waiting to be scanned and treated. 

This was peer support – we were an informal support group.

We got to know each other, we chatted about our concerns and most importantly how we manage the FBEC rule. FBEC means Full Bladder Empty Colon that is the status we had to achieve before treatment each day.

The chat was usually dry, caring and a bit humorous. Before radiotherapy you are scanned to see if you have met the FBEC test. If you don’t you are sent out to rectify the situation – you have three goes – if you fail all of these then another day is added to your programme.

Prompted by this experience I produced a badge.

I wanted the badge to commemorate our experience, in a small way to raise the profile of this treatment and to flag up to other men who are also going through this process that they are not alone. 

In a gentle way the idea is to flag that a group of men sitting together and chatting is actually an important part of the process. 

I sent the badge with an Badge Letter to the 25 or so hospitals in the UK that provide radiotherapy. Suggesting they might want to make the badge freely available to men who are members of this club and also suggesting that very short leaflets written by patients about what they learnt could be included.

After three weeks I had three replies. One from Prostate Cancer UK and the other two from hospitals. 

I suppose I should not have been surprised – but responses so far have included – and I paraphrase:

‘We already provide personalised communication about this issue for patients – one to one’ This is great of course – but rather misses the point that a group of adult men talking and sharing their experiences brings a different sort of value.

‘If we provide this badge to prostate cancer patients then everyone would want one’ I really don’t think this is a particularly strong argument!

What I learnt

I suppose I should not be surprised. Despite the excellent clinical expertise it feels that the role of patients as active partners in supporting each other is not really understood by many clinicians. 

Of course it could just be that the badge idea is really naff!

What do you think?