Sunday, 28 December 2014

A Summary of 2014...

Seeing as it is almost the of the year I thought it would be a good time to do a review of the year, both from my personal point of view and from what has happened with the blog and other related events.

To start with is the more personal side of things, followed by the blog stuff, so scroll down if that is what you are interested in.

November last year I ran a 10k and picked up an injury, then Christmas, chest infections, moving house and life got in the way. Over the last 4 months my wife and I have picked this back and up and are again running 3 times a week for 30 minutes and I am pushing the buggy. My foot is still not hurting from doing this and I am still so grateful for how well the radiotherapy worked.

Badminton Coaching: 
At the end of last year I passed my final badminton coaching exam and I am now a fully qualified coach. I am trying to build up the amount that I am doing but normally manage to at least do 4 hours a week. A lot of that time I also spend playing and although my foot is sometimes sensitive afterwards but it never really hurts for long.

This was probably the major event of the year, this year we moved house. This has made a massive different to our lives and it seems like we have been in the house for such a long time.

Mini Manley Bakery: 
My wife started her business after we moved as she now had the spaced required. Her skills have come on leaps and bounds in the last 6 months and her cakes look amazing (see below), I hope the business takes off as she has worked so hard on trying to make her dream a reality.

Feel free to check out her website and blog.

The Mini Manley: 
This year my daughter has grown up so much it is crazy, she walks, talks, sings, signs, asks for cuddles and gives kisses. Seeing her grow up is a wonderful thing and much more enjoyable with the use of my feet. She has already had a taste of badminton after grabbing a racket so perhaps I can combined my love for her and badminton in the future.

My Nan: 
One of the biggest things this year was the passing of my Nan due to pancreatic cancer, it was was quick and a shock for the whole family. She is going to be greatly missed, especially over Christmas and I expressed all of that in my memorial post.

The blog: 

The blog is something that my Nan was proud of and I am hoping to keep on taking it to the next level and help and reach as many patients as possible. This year I have been contact by patients from all over the USA and UK and from many countries including Argentina, Brazil, Australia, Holland, Germany, Italy, France, Hong Kong, Sweden and more.

Activity on Facebook has increased greatly. The Facebook page has gone from 86 likes to over 275 in 1 year!!!! To me that is crazy but also great as it means that I am reaching more and more patients with the (hopefully) helpful posts I am making. This year we were also asked to set up a group and this now has nearly 200 members. It is a private group and there are lots of great discussions with patients all over the world and the odd doctors. Again this is another way for patients to interact and help each other as a lot of people are on Facebook it is easy.

Contact with the Media; 
Over the last month or so I appeared on BBC South East today and appeared in a couple of local papers. This led to several patients contacting me and I am trying to get the condition mentioned in some higher profile media outlets but I doubt it will come to anything.

I have also had my story written up for the Dupuytren's practice which will hopefully be helpful to any patients that are visiting their site and new Facebook page.

Patient Series 
October / November also saw the launch of the patient series, this is a set of posts about other patients that I am going to follow over the next few months / years to see how their condition progresses. After al I am hoping that my condition will never progress again and so it is better to follow more patients than just me. This already seems to be a hit and receives a lot of attention on the blog.

Patient Interviews:
This year has also seen some new interviews added to the collection with both a doctor and patients linked to laser therapy having been interviewed and patients from RFA and TPA also answering my questions. It would be great to be able to hold some live / video interviews with the patients even if I don't have the facilities to edit the videos.

Patient Survey: 
The patient survey was also launched this year and has been answered by over 2000 patients and is hopefully going to give us some interesting results to look at.

What next? 
Next year we are looking forward to presenting data at the International Dupuytren's Symposium and looking forward to analysing the data and seeing what interesting results have been obtained.

Continue the patient series and monitor what is happening to all the patients, it is so kind of them all to take part.

Hopefully get a few more stories in the news to increase doctor and patient awareness of the condition and the different treatment options.

Who knows, perhaps having some video chats with patients and hopefully interviewing more doctors and patients to add to the ever increasing collection. Hopefully the Facebook page and group will continue to expand.

On a personal note I would love to lose all the excess weight I put on whilst I couldn't exercise because of my foot. This is something I need to do and would love to be able to get down to a sensible weight this year and banish the largest remaining constant reminder.

Finally thank you to all of my friends and family who have always helped and supported the blog and of course to all the patients who have ever sent me a nice e-mail or commented on a post and especially to those that have done an interview etc.