If you read my first blog you know that I think my job is brilliant. Why? Because I get to meet and hear from so many amazing people involved with this charity. And this month was no exception, when I was having a chat with our Community Support team up in the North East. They told me an inspiring story about Leti Hawthorn and the work that she and our North East team have been doing to support men who’ve had treatment for prostate cancer.
To set the scene, Leti has designed a 12-week programme that aims to help improve quality of life for men with prostate cancer – and last year she got eight men to sign up and trial it for us.
The main focus of the programme is on physical activity, which we know can be hugely beneficial to people with cancer. But the course also covers things like managing fatigue and nutrition and dealing with the range of emotions that can come with a prostate cancer diagnosis and the side effects of treatment, not to mention the affect it can have on their relationships at home.
Two issues really struck me when hearing about the results of Leti’s programme. Number one is, sadly, the drop off in support from the healthcare system for many of these men once they’ve finished their treatment. And secondly, that we need to remember it’s not just men that are affected, those around them need our support and attention too.
One of the most difficult side effects of prostate cancer treatment men can be incontinence. And for one man taking part in Leti’s programme, it was even more of an obstacle. He had experienced mistakes in surgery, which were causing persistent pain. This severely affected his daily life. And on top of that he had to deal with the frustrating battle to try and get enough incontinence pads.
He was initially quite reluctant to take part in the exercise sessions, because he was anxious about his continence issues. But he soon started to overcome his reservations and began to see great results from taking part. Talking about his progress Leti said, “He found that he could manage very well in the exercise sessions and started to get back into simple parts of his daily routine, like walking the dog.”
That simple regaining of control was a huge step for him. And a great sign of progress for the rest of the group.
A great bond developed between group members who supported each other, and they even took action to try and remedy the lack of practical assistance some of the men were experiencing. This was particularly important in finding ways to get hold of incontinence pads.
And it wasn’t just the men that were benefiting from the programme. Leti found how one man, having a very difficult time, attended each consultation with his wife. “They were both still reeling from the shock of his diagnosis, the effects of the treatment, and the feeling that they had nobody to turn to.”
The wives of the men on the programme played a key part in its success. And it soon became clear that they were having a tough time too.
Leti said, “They experienced a range of issues from feeling that there was no support for their husband once surgical treatment was completed to the assumption that they were readily available to care for them 24/7. This was despite the fact that some of them were working or caring for others. They appreciated the opportunity to meet with other women in similar situations and meet with me and with Prostate Cancer UK staff to ask questions”
Some of the wives felt that the programme had enabled their husbands to open up more about their feelings, which resulted in them being more physically active, changing their eating habits and generally taking better care of themselves.
People talk a lot about men ‘surviving’ prostate cancer but what does this actually mean? It’s clear that Leti’s programme is about so much more than that. It’s about men finding an environment where they can share their emotional issues, and get back a sense of normality in their daily routine that had been lost.
When the sessions came to an end, all the men involved where keen to continue the work, and become ambassadors for the programme. In fact some of the men and their wives have already accompanied Leti to new venues, encouraging other men to sign up to the programme and give valuable insight to health professionals and potential funders about their experience.
The men are also keen to speak about their prostate cancer journeys and to offer support to newly diagnosed men and their families. What’s more, the wives also decided to continue supporting one another and all of the men and women decided to get together to exercise on a regular basis too.
So if you’ve been inspired by Leti’s work and the work we’re doing across the country, get in touch with one of our representatives in your region to see what we’re doing in your area and how you can get involved.