Today, with kind permission, we reproduce a post written by Chris Lewis a good friend of our Cancer, Older People and Advocacy work and first published on his own blog recently:
The work that I do in cancer support has changed dramatically over the years, and I have had to adjust with the increase of demand on my time. My speaking engagements and charity take a bulk of my time now, with writing filling any gaps. But one thing I was determined to continue with is my monthly prostate group facilitation, which I have been doing now for 8 years. This is done at my local cancer centre and we have a group of approximately 30, with new members every month. We have professionals from the local community as guest speakers and everyone shares their experiences to try and improve the offer for patients coming into the system now.Our members come from a very local area and in general visit the same few GPs and mainly three hospitals for their treatment.
But what continually shocks me is the mixed messages being brought back to the group. There is a huge amount of experience amongst our members which is why the group is busy. Most have learned to be proactive with their own care because they have to be! The guys are a great cross section of prostate treatment with some starting, and others dealing with the side effects of their treatment. This particular cancer has many different options of treatment with different outcomes of course. All have different side effects, and for most people, making a choice is one of the most difficult things they will have to do.
Of course, everyone is affected differently, even when two people have the same disease and treatment which we all know. Treatment is changing rapidly now and even in my time of working with the group, surgery is now being done by robotics, and radiotherapy has become much better targeted to leave less peripheral nerve damage. This is progress of course, along with the more tolerated drugs etc, but why am I not shouting from the roof tops? Simply because our communication is still as poor as ever. With this particular cancer, the treatment decisions can be complex, but it is after treatment where the complications can really begin. Some of the basics of life for men, being embarrassingly difficult. Unable to control accurately when you need to go to the toilet, and wearing nappies, in case of accidents. Erectile dysfunction being also very common for many, after treatment. Having to take hormone therapy for several years, changing your physical appearance, getting regular hot sweats and growing breasts. You can’t begin to imagine those sort of changes can you?
However there are many things around now that can improve life after prostate cancer, but it certainly is a lottery whether you are told about them or not! Many of them are available on the N.H.S, but it seems very few are actually informed what is available. A quick example would be the pads that men wear. People spend a lot in supermarkets buying their own but apparently there is service that delivers them free of charge. Some people know about it and others don’t. The same applies for problem with erectile dysfunction. Tablets, machines, pumps and under the skin valves are all available, but so many people are just not aware much of this exists. It is so strange listening to the group sharing their own experiences. Many looking on in amazement as one mentions a service that nobody else was aware of. Why is this still happening in this day and age?
My initial thought was cost, as that is always one of the first things mentioned, but maybe that is the cynic in me? How can it be that people living in the same area attending few hospitals get very contrasting information? Not being told some of the key elements of what might actually improve their physical and emotional wellbeing. This really shows why it is important for patients to talk to each other and the value of support groups whether online or physical. I have always been proactive with my own treatment and encourage others to be the same. But let’s be honest at the time you are feeling most vulnerable it can be difficult to be ‘pushy.’
We are doing some wonderful things now for people affected by prostate cancer, but what I have learned is that like with most other cancers, it’s the psychological and emotional issues that follow, is where the biggest problems are.Why oh why is it still so ‘hit and miss’ that people get the treatment they require? Whether you have a particular urological nurse or not? If you see a certain Consultant or you don’t?
Communication is still the major obstacle to helping these people. Despite the Internet, and information from many different charities and the health service, it is just not being delivered in the right way. Leaving people to their own devices after they have had traumatic treatment will not help them with their quality of life. Surely after they have been treated, they deserve the best opportunity of returning to as normal a life as can be achieved? It is no longer good enough to think the job has been completed once you leave the hospital. The after effects of many of these treatments can continue for years after, and sometimes for life. We must do more to ensure that each case is looked at individually, how that person lived their life before and what ambitions they may have for after.
In my opinion we must make every effort to improve the quality of life after treatment for people affected by cancer. Not having the services available is one thing but for them to exist and people who need them not to know about them is a disgrace. My experience has shown me that there are still too many ‘cooks’ without real effective collaboration. It can no longer be a matter of luck whether we find what we need!!
This video will help explain some of the issues that people can face.
As always I have share my thoughts and experiences above, and please feel free to share your below. It’s your help that gives me the information I need to ensure positive change can happen.
Chris Lewis: Twitter @christheeagle1