Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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It’s a lottery, even in the same postcode!

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:

 

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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! post code lottery 3 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?Post code lottery 1 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 


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The Changing Face of Cancer Support by Chris Lewis

I would like to start this piece by thanking Marie and the OPAAL organisation for inviting me to write a guest blog. My own experience got me into cancer support, and I would like to explain how that happened, and a bit about what I do now.

In 2007 I was a self-employed business consultant, specialising in the ladies fashion business. I was flying around the world buying and selling, and generally enjoying myself. The landmark of fifty had been passed without any health issues at all, so I was looking forward to a few more years of work, then early retirement, to travel with my wife.

Unfortunately I got sick soon after those decisions and I was told I had a rare incurable blood cancer, (Mantle Cell Lymphoma) and it was stage 4. I had aggressive chemotherapy followed by a stem cell transplant in an attempt to give me more time. This has left my immune system compromised and I now suffer from a regular onslaught of infections and viruses, meaning I have required treatment constantly since.

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Chris Lewis

Realising I would never be able to return to work, as my health had now become unreliable, I decided I wanted to focus on a project. I had seen for myself the total lack of effective support for people after treatment and decided I would try to improve that. I was so shocked at how bad things were and I felt that too many people were just happy to accept that as reality for people after a cancer diagnosis.

I needed to understand better how the current system works, so did a lot of volunteering with local and national charities, and in between also spent a year on a course to learn more about cancer and its effects. This was a fabulous fit for me, because with my unreliable health I could volunteer when able, and it gave me the focus I craved.

After several years, people were noticing my work and I won some national awards and my profile in the cancer community was raised. I was doing a lot of public speaking but I knew that there were so many more people I couldn’t reach. My friends suggested that I take to the internet and write a blog, to help contact more people, and this I did. Very slowly things progressed and the audience grew, and today we are read in most countries around the world. Not only by people affected by cancer but also clinicians and people working for large health organisations.

Social media has helped me work with so many people I could never have imagined, and my reach is larger than I could ever have achieved without it. I still work ‘face to face’ with support groups regularly, but I am finding more people are enjoying the freedom of social media. On these platforms you are not constrained by time, weather, transport and health etc. You can also be anonymous if you choose. But I am also aware that there is still a part of our community that is not yet used to that method of communication.

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My work covers people affected by any cancer, as many of the issues we face are common with every disease. I also work with all ages and I am delighted that the popularity of my work is now increasing in the teenage and young adult area. I do my best to collaborate with existing organisations, as resources are scarce so no need for duplication. However there are currently many gaps in service and I do my best to fill some of those.

I was interested to see the work that Cancer, Older People & Advocacy does with peer support, and reading the criteria I realise that I fall under your umbrella myself! It is such an important aspect of my work, but of course there is only me, so couldn’t work in the way that you do. One of the biggest issues I have seen with cancer is that it makes people feel isolated, and I do my best to connect with as many people as I can to help with that issue.

My experience also shows me that there are many organisations out there doing fabulous things, but are not being found by the people that need them. Many of the larger ones seem loathe to signpost to services that are not associated to them. Therefore I do my best to share resources and encourage people to collaborate much more.

That is a brief idea about the work I do. Please feel free to visit my site where there is a lot more detailed information. You will be able to see videos etc explaining more, and you can read from the back catalogue of my own blogs.

Chris Lewis