Why people need online cancer support

Posted in: Wellbeing Last updated: 17 Apr 2014

There is no doubt that online and social media has become more and more prevalent in our everyday lives. People are choosing to turn online for all manner of things and the same goes for cancer support. There has been an interesting shift from offline to online support with an increasing number of cancer patients and their families turning to blogs and forums for guidance.

We caught up with blogger Chris Lewis, the founder of ‘Chris’s Cancer Community’ to hear his thoughts about review for cancer support online and about his own remarkable journey.

Engage: Can you tell us when your cancer journey began?
Chris: It started in 2007 when I was diagnosed with stage 4 Mantle Cell Lymphoma at 51. I was a self-employed businessman travelling all over the world. At the time I got more and more tired but I didn’t recognise the symptoms. I avoided seeking medical advice because I thought going to the doctors to tell them I was tired wouldn’t get me anywhere. After a while my wife convinced me to go and the doctor gave me some blood tests. The very next day the doctor called me up and I was told that things were not right in my blood and I needed to go to hospital. One thing led to another and I was told the problem was my tonsils and I needed them out quite quickly. After my tonsillectomy I went back to work and felt much better but after a couple of weeks I got a phone call from the hospital asking me to go in for a check-up. I thought blimey, this is very good service! I then got the news that I was covered in tumours and if things didn’t go well I wouldn’t have six months to live. The disease was incurable and my only option was aggressive chemotherapy and a stem cell transplant. Of course, that all went very favourably, hence why I am able to talk to you today. I say favourably but of course I’m still under treatment and have been for 7 years. I’m in remission from the disease which is a miracle but I now suffer from rejection problems from my stem cell transplant which is still ongoing.

"I can’t change my own situation and I thought whatever time I do have left I want to help other cancer patients."

Engage: How did Chris’s cancer community come about?
Chris: People had been so kind to me in the health service and allied professions that I thought I need to do something. I can’t change my own situation and I thought whatever time I do have left I want to help other cancer patients. I then started my own charity in the hospital to help buy specialist equipment to assist with stem cell transplants. This made me realise I could help people and put a smile on people’s faces and I wanted to do more. I went to MacMillan and started a data entry clerk position which was great because I was weak at the time so it was nice to be able to leave the house and have something to do. Still wanting to do more, MacMillan then paid for me to go on a course and get some qualifications around cancer. I used this knowledge to go out into the community and help people face to face. After a while my profile grew and I started getting recognised in the cancer community, and I was asked to go on a television show called ‘You deserve this house’ a documentary by Channel 4 where homes of local community heroes received a secret make over. This programme led to people wanting to know more about my story and I thought the best way to tell the story was to start a blog. Before this I wasn’t on social media but my friend helped me set up a blog and encouraged me to write about my experience. I’d never written before but once I started writing people started following and my audience grew quite quickly. The blog has been running for 2 years now.

Engage: Why do you think people reach out for online support?
With cancer a lot of people feel that they’re alone and my blog tries to remove that feeling of isolation. Cancer patients can often feel like they’re the only ones feeling the way they do and actually they’re not. I’ve found cancer is a bit like talking about money to your friends or sex with your friends, it’s a subject that people don’t like to talk about. As much as they would like to and they could benefit from it, it can be difficult. So what I’ve tried to do is open my life quite openly to try and encourage people to think about their own situation and read my experience and think a lot of good has happened to this guy but he still has dark days, just like me. The advantage of the blog is that you don’t need to be face to face and some cancer patients don’t want to look someone in the eye and share their problems. The great thing about the blogs and social media in general is that you can be who you want to be, it’s up to you how involved you want to be. You can choose to partake actively by becoming a member or choose to read quietly on the side lines, it’s entirely up to you.

Engage: Do you think people prefer online support opposed to face to face?
Things are changing but I’m not an advocate of replacing one with the other. I think the combination of both is needed because people need to talk. Time is a valuable commodity and people don’t seem to want to give it freely. When you go and see the doctor their main concern is your medical progress, they’re not there to discuss that you’re out of work or that your marriage is crumbling because you don’t feel physically attractive. Professionals in general don’t have the time for what I call the ‘holistic’ approach that online support can offer.

Engage: What would you advise someone who’s looking for support online?
I would advise them to start with forums first as it can offer them guidance. In terms of health there is so much out there that you don’t know where to start. When you first get your diagnosis they advise you to not go onto the internet but of course that’s the first thing that you do. Going on the internet is like going to a library with no staff there. You just end up fishing around. It takes time to find stuff and there are different levels too. There are blogs out there that are quite to the point and if you’re not ready for it, it could be upsetting.

Engage: How are people engaging with your blog?
My blog is a type of therapy, its cathartic. I love helping people with cancer and it’s my passion now. Whether its patients or their family or health professionals. It’s like an Encyclopaedia which covers a range of different cancers and patient experiences written by myself or guest bloggers. People leave comments on my blog or they can message me on Twitter and Facebook. It’s really private and I try to share my experience to help as much as I can. The other day I was messaged on Twitter by a lady whose husband had been diagnosed with the same diagnosis as me, she’d found me online and she said that she had just read my story and it’s made her feel so much better. That blew me away! I guess with my story I provide hope and sometimes people need hope. If you want to find out more about Chris and his cancer community you can visit his blog. You can also follow him on Facebook or on Twitter @christheeagle1

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