An Update on Me - 12 years post Radiotherapy

I wanted to give a detailed update on me and my Ledderhose and more around my lifestyle in general. 

For new visitors please read the following post to see my background.

In short my journey prior to successful treatment:

• Noticed lump in foot around 2009.
• Got sent for physio! And was rightly told that they could not help.
• Advised to wear supportive running trainers. Note I weighed around 18 stone, so at 5ft 9 this didn't help.
• 2011 started to become more painful. 
• Had Steroid injection and it helped for a few months then it came back angry.
• NHS Foot specialist advised that surgery would likely result in it coming back so not worth it except as a last resort. 
• I was working towards a PhD in Cancer research so delved into the science and started this blog. 
• Referred for and fitted with orthotics which helped a little as well as having diagnosis confirmed with an MRI. 
• Became super painful but told other than surgery, which is a last resort, there was nothing the NHS could do. 
• I started using a walking stick to get around and take some weight off of my foot. 
• My wife found radiotherapy with Dr Shaffer as an option. 
• I was treated in May / July 2012 and combined with moving away from the lab to a desk job I found myself recovering quickly.
• Throughout 2013 my foot continues to improve to the point where you wouldn't realise I had it. 

The Ledderhose:

So firstly the Ledderhose. In terms of pain I am still in a great place, I have very little if any pain from the Ledderhose disease. I can sometimes feel an ache around where the nodule is when I have been doing a lot of running but nothing prohibitive. Now you will notice that I said where the nodule is... In the last 6 months or so the nodule has grown again. So it was very small and dormant for the best part of 9-10 years and in this last year it has grown a little. It might even be bigger than it was before however, even with my running, it is not causing pain above 1/10 let alone the 9/10 I was getting on every step before.

In terms of my journey since the start of 2015 I collected a whole bunch of patient data and presented the results at the Dupuytren's Symposium in 2015. That was a great experience, I got to meet so many specialists and live blogged about the conditions (which was surprisingly popular!). 

My Diet:

Something that can be very divisive but I am convinced that a proper human diet is high meat, low carb and that this isn't even bad for the environment or the animals. This might sound crazy but I, and many others, have done the research and there is just so much money in food and keeping people sick that it is had to impossible for the required research to disprove it to take place. You air these views and are seen, at best as being eccentric and at worst as a conspiracy theorist. Speaking from my own experience, and from many others I have spoken to, the lower in carbs and plant matter people go the better they feel. There is a transition period and a mindset adjustment but it just works. 

Now it might seem odd to mention this on a blog about a foot condition? Well I just wish I knew what I knew now back then. If I had weighed 10 stone (which I do), rather than topping the scales at 20 stone(which I did), had I known how great carnivore (zero carb) can be for auto-immune and its anti-inflammatory effect, could I have saved myself the cost and impact of the radiation therapy and years of stress? My gut tells me probably not but my brain and the results I have had suggest that it would have made everything much smoother, more effective and honestly I do wonder if I had been low carb my whole life if I would have even developed the condition. 

I say that because of the massive impact that reducing carbs has had on my physical health and that of my wife. I think it is shocking that we are being pushed more and more onto a plant based diet and despite these shifts the world continues to get less and less healthy. Anyway I won't say anything more on this other than to say to get in touch if you have any questions. 

Exercise:

Obviously back when this condition was bad I could barely walk and my physical activity was massively hampered. Looking back I wish I had done some weight training or something but motivation was severely lacking. Now I am one of the fittest people I know. I do a lot of weight training and am comfortably able to do pull ups etc. and I am one of the the best local runners, normally finishing in the top 3 at my local parkrun. In fact out of the 15,000+ people that have done the parkrun I am in the top 75 of all time. I try to focus on the process and mental health as well and last year ran 2750 miles, many with my daughter on her scooter, with my wife or with the dog. Since my treatment all those years ago I even (badly) completed a marathon for the British Dupuytren's society and still proudly wear my BDS running vests now. 

The Treatments:

Honestly not a huge amount has changed. I would love to be able to say there have been advances and there are some great new injections but the treatment landscape looks much the same now as it did back in 2012. Hard to believe that it has been 12 years.

Finally...

I am now hitting the 12 year anniversary of starting radiotherapy with Dr Shaffer. Having that radiotherapy was one of the best decisions of my life and something I am so grateful for every time I step out the door for a walk or a run. Honestly I am concerned by the growth I have seen over the last 6 months but also optimistic as the lack of pain I am suffering. 

In the future I am hoping to keep on running, getting quicker and pushing through what I ever imagined possible 12 years ago. Hopefully it provides some inspiration and hope to other patients and I continue to keep an eye on research in the hopes that better treatments come along. If I get the time I will try and do a review of some of the literature but accessing and understanding it is much harder now that I am not longer in science. 

Happy feet everyone and please get in touch if you have any questions. 

Update on everything

The Update

This is just one of my updates to say that I am still around and working on things in the background. Again in the last few weeks I have had patients contacting me and it is nice that I am now able to put them in touch with patients that are fairly local to them and in some cases have had treatment with the same doctors that they are considering seeing. This is really good as it means not only can I try and give out the information that I have but I am also able to spread this and let them get knowledge from someone else.

I am hoping to turn this into a network of sorts. It would be great if I could have a list of contacts, just name, e-mail, home city / country and treatments had / specialists seen. Then when someone contacts me I can point them in the direction of this person, or to the network page where they can find someone with a similar experience and ask me for their e-mail (I would not want to publish these on the internet.

Interviews on the way from both professionals and patients although they have been "looking" at the questions for several months so I am starting to doubt whether they are going to come or not, at least I have tried. It would be great to get some more information on Verapamil and Cryo so hopefully I get some responses. I am also working with another patient and a professional on 2 separate posts which I hope to find the time to do soon.

How you can help:

As always don't forget that there already is a network or sorts, the Facebook page is building likes and so there are a growing number of patients that will see your post should you share your experience.

Please consider hitting the plus 1 button on the right if you found the site useful, this will hopefully help others find the page and will help to moves things forward.

Volunteer your story. It is always great to hear from patients, if you have had treatment and think that sharing it with others might be helpful then please contact me and I will post it, or send you questions to do an interview as I have with many others. Equally it would be great if people would let me know if they are willing to be contacted by other patients should I think that their experience and knowledge might be useful to them.

 My foot?

I have been really busy in the last few weeks. As I have mentioned previously I have started running, my foot has been coping well with that and I have started to enjoy it. As part of a charity run for work I managed to run 10km, a great achievement for me. I am also back playing badminton and working towards becoming a fully qualified coach. My movement around the court is still flatter than it was before my foot got bad but hopefully I can lose weight and get back to where I was. My foot has been coping great, in fact I would say that the post run and post badminton soreness is decreasing so the only thing that still gets to me is standing for long times.

The baby
 
Amelia is growing nicely and continues to develop every day. She is well trained and sleeps through the night, as she has done since she was 8 weeks old. She is a cheeky monkey and thinks she can get out of any situation by smiling sweetly and to be fair to her that works on most people excluding her Mum. She has an infectious laugh and it is wonderful to see her starting to develop her own personality and beginning to try and become mobile.

And Finally...

Thank you everyone for your continued support, the blog went over 90,000 page views recently and it should go past 100,000 in the next 3 months, it still seems crazy to me that so many people want to view my blog and find it helpful. I will certainly have to do a review post once I reach this milestone, after all I did suggest I would do it back when I got my first 1000 page views.

My week, pain today and probably pain tomorrow

My Weekly update:

For starters I am going back through old posts and trying to eliminate spelling mistakes and typos to try and generate higher quality content for all visitors to the blog, this is important to me as I want to make sure that all information is clear for everyone to understand. So if you spot a mistake please message me as I really want to get rid of all of them.

Next on to myself, well my foot has been hurting quite a bit at different times and there seems to be no logic between when it does and doesn't hurt other than it is exacerbated by standing and walking. I also went swimming earlier in the week and found that although it didn't hurt when I was in the water once I came out it was really bad and I was hobbling all over the place. 

Although swimming is not weight bearing I guess that doing the breast stroke will put extra strain through the fascia and I did notice myself not using the bad foot to the same extent as my good foot when in the water. My foot is becoming more and more of a pain and I am continuing to struggle with the everyday work tasks but it can be so bad sometimes that I don't want to stand for 5 minutes to shave followed by 5 minutes for a shower but of course these things have to be done and many people have it worse off than me. 

Today was a really bad day, I don't know why and to be honest I don't really care I just want the bad days to stop as they make me feel so rubbish. I am sitting at work, working as hard as I can but I don't feel I am working hard enough and this is because I feel I am being held back in this job by my foot. This is a horrible feeling as the last thing I want is to let people down, this then means I work harder and try and get through the pain which means the pain gets worse and worse to the point I can't walk so I can't do this and I have to pace myself just to be able to make it from 8:30 until 5:30 and I know this can be prevented if I was seated. It also means I feel I can't start that awesome experiment just in case it means I am going to go over the edge with my foot because of course I can't take my strong pain killers as they send me to sleep.

I am still yet to have confirmation of my radiation appointment which is really annoying as I need to book a hotel, confirm time off work, plan how to get there etc. etc. and I can't do that when I do not know for sure that I am going on that week but Dr Shaffer's PA has been very helpful and is chasing the matter up for me. I am almost looking forward to radiotherapy now, just the fact that it might help is really big thing that keeps me going on the hard days. It does make a difference knowing that it is less than 3 weeks until the appointment but I just want to be off of my feet now as I am sure if I was in a job where I didn't have to stand and walk I might not even be in the position where I need radiotherapy. 

Since I typed the above my appointment has more or less been confirmed, yay. 

That is my rant over for the day but I sometimes wish there was a Ledderhose simulation device so that people could understand what it is that I am putting up with all of the time, but of course they get to take it off. This might help increase understanding and get everyone together to do it at the same time and you might increase awareness. I guess all people need to do is to stick something to the arch of their feet and this might replicate the condition in some respects even if they can't feel the pulling on the toes they will feel the constant annoyance and pain.