The blogging revolution in healthcare

Several blogs ago I mentioned that my diary was mostly empty and I was enjoying it that way. My major professional engagements were successfully completed, and it was now time to review my strategy for the rest of the year.Emails and phone calls then came along, with some varied and exciting opportunities, which set my juices flowing, so I am back in the game!

I have chosen today's subject, as a lot of the opportunities that are coming around for me,are linked in some way to my blog. Many more people are aware of what I do now, because of the power of the internet. It is such an effective method of communication. Anyone who wants to know my story, or what I am currently working on, just has to check it out via the blog. It saves me so much time, phoning or mailing people.It also means that people can do things when it is convenient to them.

 

My blog was started just over a year ago. I needed an internet platform for people to find me when my tv programme was broadcast. I didn't know what to write or who my audience was. It was just a focal point for anyone who was interested.But today the picture is very different.There is now an audience, and demand for a certain style of content. The audience expects high quality and interesting content. All this for free!

Bloggers get wound up by lack of comments, but do we comment when we read a newspaper? There is plenty of area for thought, but generally we move on to the next unrelated article, having consumed that one.Also, more of us are reading from smart phones and tablets on the go, which is not conducive to writing comments, even if we are thinking them.

More than 5 years ago, when I started working to raise awareness, of the psychological and emotional issues of cancer, social media was in it's infancy in the health sector.Facebook, was busy, with people's holiday pics, but nothing much else, and Twitter was starting to be used by celebrities as a method of promoting their work. It appeared that blogging was for 'would be' authors, who wanted to dip their toe in the water, and test their work, with very little expense.

How things have changed in such a relatively short space of time! Obviously the subject of cancer is a niche market, but you would not think that. If you look around the internet thoroughly, you can find information on virtually anything. It seems like people are embracing the freedom that they find in social media.When I started writing, I felt that an open and honest blog was what was required to encourage people to think about their own issues differently.I now find so many people are opening up about their illness in such an intimate style, that at times I feel like a family member!

Reading other peoples stories is very powerful, and people can find a sense of release, when writing their own.The slightly unseen, and so far relatively untapped benefit, is when the professionals get involved. Patient blogs are a wonderful tool of understanding how cancer and it's treatment, affects people in their lives, and I feel that many health professionals lack even a basic understanding of social media, and there is still a feeling that it is not valid in their work.

However there are clinicians and other professionals around the world who are fully engaged in social media. They blog, they tweet and run websites. Happy to share with the knowledgeable and the less so. It is quite obvious from what they write that they are all well informed, regarding patient blogs.These are such a rich vein of information, and much more interesting than books.Everyone has a unique way of communicating their experiences and emotions, and dealing with the highs and lows that occur during ill health.

I don't think I can claim credit for the revolution in health blogging, but I am certainly proud to be a part of it. There is never a day goes past where I don't read somebody's blog.I feel I know those people so well even though in 'real life' we have never met.Social media generally, is a very powerful glue, binding like minds together, and helps forming strong bonds, enabling you to deal with difficult times slightly more easily.

In recent weeks I have been shocked by the demise of several members of my 'community.' Mostly, young people, taken by bowel cancer. #never2young Truly terrible. The thing I find so powerful is that all of them were so open and honest about their situation and shared a lot willingly, with everyone.This is a massive change to how things were with cancer even just 10 years ago, when people rarely dared to even mention the word.

 

It feels very perverse, to say that things have progressed when we now talk openly about death on social media. My view is that we can't deal with something properly until we understand it, and by talking about things, hopefully we can learn more. There is a lot more to come from blogging, so watch this space!

I would like to dedicate this post to the brave young lady that is #katiescarborough Katie has just written, what may possibly be her final post entitled 'a brick wall.' I have never read such an incredibly brave piece, and I remain in awe of this young lady and her family. My thoughts are with you all. This sums up the power that can be generated through a blog.

#never2young bowel cancer, Hayley's story

One of the great benefits of social media, is that that you can see a lot of up to date information quickly. With Twitter and this blog, I am in contact with people around the world, not just involving blood cancers, and stem-cell transplants, but many others too. I enjoy keeping up with other aspects that I may not be quite so familiar with.

Over time, it seems that I have connected with a lot of people affected by bowel cancer, and I am benefiting from their knowledge and support. Just over a week ago, my Twitter time line went crazy with a new campaign, #never2young. It was raising awareness about early diagnosis in young people. Bowel,is the 2nd biggest cancer killer in the UK, and like many, it is treatable, if caught earlier.

Raising awareness is a passion of mine, so I started re tweeting etc, and I received a massive response from around the world. People wanted to know more! With the campaign building, and Bowel Cancer Awareness month approaching, I asked Hayley, who appears in the below video, if she would like to share her story with my readers.

It is an incredibly moving, personal story, and I am extremely grateful to Hayley and her family for letting me share it with you.

"My journey with bowel cancer first started in June 2011, 6 months before I was even diagnosed. I was 23 weeks pregnant at the time, in the middle of one night, all of a sudden I awoke with an excruciating pain in my left side. I was unable to walk properly and was very uncomfortable. My husband, Paul, called the out of hours doctor. I was told to attend the surgery at 3am. The doctor felt around my abdomen, listened to our baby's heartbeat and all appeared normal. The doctor diagnosed me with round ligament pain. I went home, rested and felt a lot better the next morning, and so thought nothing more of it.

At 27 weeks pregnant, I was rushed into hospital as our baby had stopped moving. After a couple of hours of scans and traces, the obstetrician decided the best course of action was to deliver our baby, 13 weeks premature. Out baby was born on 24th July 2011, named Autumn. Autumn was only the size of a 23 week old baby, she'd stopped growing at the same time I'd had a pain in my abdomen. Two weeks after the birth of our little girl, the terrible pain came back in the same place and I went to see a midwife about it. We could both feel a palpable lump, I was told this is probably due to just giving birth, or a possible bowel infection. I was given antibiotics and the pain went away again. Our little girl survived for 4 weeks, she was incredibly brave, she passed away peacefully in our arms after a second operation on her under developed small bowel to rectify a blood clot. It was and still remains, the worst day of our lives.

Mid December came and I was feeling very low, depressed and exhausted. All of this, I put down to depression. The pain in my side came back and when I pressed on it the lump felt bigger and really hurt. The abdominal pain increased and I was vomiting and having loose bowels, I went to the GP and she could feel the lump in my side. The GP could see I was severely dehydrated so I was sent to the hospital to be put on a drip with suspected diverticulitis or Crohn's disease. After a ultrasound and CT scan, it was discovered that I had a thickening of the bowel lining. The surgical team came to my room and broke the news that they'd have to operate the next day as it was suspected tumour in my bowel. I couldn't believe this. I asked the surgeon whether this was the reason our daughter was premature, he said that was almost definitely the case. I couldn't believe my body had let me and my daughter down so badly.

Luckily, I was able to have IVF treatment before I started my treatment and a few weeks after my operation. Radiotherapy and chemotherapy can make a person infertile so I'm very grateful we have nine embryos frozen!

I had three months of chemotherapy, which was six sessions every two weeks, then I had twenty five sessions of radiotherapy (five days a week for five weeks) then another three months of chemotherapy every two weeks, so another six sessions. The treatment was very aggressive. I was very sick on the chemo, and I was allergic to one of the chemo drugs, so I had to take a lot of antihistamines to get me through it. I did complete all sessions in October last year and after a CT scan was declared free of cancer!

I'm very lucky to be cancer free, at the time of diagnosis, I was 32 years old and a stage 3 bowel cancer patient. It's quite rare, but not unheard of for someone of my age to be diagnosed with bowel cancer. I am currently involved with Bowel Cancer UK's 'Never Too Young' campaign. I feel so strongly that many young people aren't being diagnosed early enough, we need to change this!"

If you would like to hear more from Hayley, you can find her on her own blog

You might also like to contact Bowel Cancer UK for further information.