Time for a long overdue update

Well firstly i’m going to start with an apology as my website has been down for some time whilst i focused on moving on with my life. I have to be completely honest and admit that i completely lost the motivation to share updates about my health and progress.

However, a recent invite to a fabulous IPSEN workshop in Paris gave me the motivation to get my website back online! I attended this same IPSEN workshop last year with my friends from KANGA HEALTH. KANGA and IPSEN are developing an exciting new website for patients who are in the process of being diagnosed with or living with acromegaly. All being well their new website will be launched in 2017. Honestly…..it will be a fabulous resource for patients and families and i really appreciate being involved! Thanks to IPSEN and KANGA HEALTH.

Getting my website back online means that i am able to offer ad hoc support when i can to people that may have recently been diagnosed with a pituitary gland tumour or acromegaly.

So what’s happening with my condition and treatment?

My residual pituitary gland tumour is stable and albeit active the cells remains too small to be visible on an MRI. Despite this my IGF-1 level is outside of range for my age albeit only marginally at 305 ng/ml. In myself and apart from the occasional onset of a fuzzy head and lethargy i am really well and moving on with my life. But what about the IGF1? It is out range and could be causing problems but at present i am on sando shots every three weeks at The Christie and these are kind of doing the trick. Prof and his team at the Christie are all over me literally and as it stands they are waiting too see what happens with the IGF1. Down the line the options are either new medication, further neurosurgery or gamma knife radiotherapy. I am ok with all of this.

As you may recall my tumour and acromegaly had caused significant problems with my teeth alignment and the bite going wonky. I have had braces on both sets of teeth for over three years and i was due to have a bilateral osteotomy. This however got delayed as my maxillofacial surgeon discovered that my elevated IGF1 was causing one side of my jaw to continue to grow. I know how scary/weird is this. It was all revealed during a nuclear isotope scan earlier this year.

So the current priority is stopping this bone growth and so with this in mind at the end of November i am in for jaw surgery at Manchester Royal Infirmary to have a condylar shave on one side of my lower jaw. The plan is that this will stop the growth and then once it is healed and my IGF1 is totally chemically controlled then i can have further jaw surgery to correct my wonky jaw.

Here are a few photos from this last year:

What about everything else? Well life is really good. Here are some quick headlines from this last year…..

  • I spent a few weeks in January on a Tropical Ecology field course in the Brazilian Amazon which was amazing
  • I started working part time for another Ecology Consultancy in Manchester. More bats and newt work
  • I finished my undergraduate degree at the University of Salford and came out with a first class honours. God knows how i did it
  • I found love! More of this in coming weeks….
  • I spent six weeks working in Sulawesi leading groups of students deep into the forest to carry out habitat surveys. This was unreal!
  • I have a started a Masters in Primate Behaviour and Conservation at Liverpool John Moores University
  • I am still running and have done a few more races this year including the Liverpool Half Marathon, The Great North Run half marathon, next weekend i am doing the Conwy half marathon and i am already signed up to run the Rome Marathon again in 2017 for charity
  • My sister completed Bolton Iron Man! She is a machine lols
  • i am going to Tanzania to carry out a small chimpanzee research project in February next year and i am currently in the process of sorting out my masters final project which i am hoping to complete in Cameroon carrying out great ape research

Ultimately life is going really well and other than losing our beloved cat Charlie and my dog Josh this year i could not be happier! I’ll always particularly cherish the times i had with these pets during my period of ill health.

Well that’s it for now. If there is anything that i have missed or anything specific about my health then feel free to drop me a message via the contact page.

Thanks for reading.