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.
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.
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.