Hi and thank you for visiting/stumbling/falling on my JustGiving page.

On the 9^th April 2017 I will be running (or more likely crawling) along the storied streets of the City of Love as part of the Paris Marathon. I have taken leave of my senses to embark on this challenge as both a bucket list ambition to complete a full marathon {London ballot was just not happening} and also to raise valuable funds and awareness for the Pituitary Foundation.

Now you may be asking just who the Pituitary Foundation are and in all honesty I would have said the same back in December 2014. However my world was to change when I was visiting the doctor over a troublesome knee injury only to be told 2 weeks later after a “marathon” series of test, scans and physicals, that I had a Pituitary Macro-adenoma.

Me: In English please Doc?

Endo Specialist: Oh right, yes, you have tumour on your pituitary gland about the size of a golf ball – Merry Christmas!

No matter how intelligent I think I am, I still had no idea what any of this actually meant. I had heard the words 'brain' and 'tumour' and you can't help but let your mind start racing – was this cancer? How do we nuke it? What is this alien thing doing to me? The doctor, the lovely chap that he was, was not one for bedside manner {I had been referred to a specialist by this point, and while I would come to appreciate his expertise, he didn’t really sugarcoat the diagnosis for easy consumption}.

In the world of Pituitary Adenomas I made for a fascinating case. Not only are they very uncommon, affecting approximately 0.0012% of the UK population, but it is also extremely rare to have it at such a young age {I had just won the worst lottery without ever realising I purchased a ticket}. The medics have since estimated, based on my tumours large size and the depth of symptoms I was presenting, that I probably had this tumour growing inside my conk for ~15+ years.

The biopsy on the tumour fortunately showed it as benign and relatively slow at growing. While that may make it sound lazy this nasty lump was in actual fact wreaking all sorts of havoc on my body. 

The pituitary gland, sometimes referred to as the master gland, is located just below the brain in middle of your head, and controls functions such as blood pressure, metabolism, sexual organs, adrenaline, and growth to name but a few {the very functions that underline how you feel on a moment to moment basis}. In my case this presented itself as a constant ludicrously high human growth hormone level, nearly all my testosterone production was suppressed {that of an 80+ year old man} and the large tumour was also starting to squash on my optic nerve reducing my field of vision. As I had had this tumour from my teenage years and in a time when you are still growing - the symptoms where I look starkly different to my family in terms of size {I would put weight on easily; a lot taller then my family, have very broad shoulders, pronounced jaw/brow etc}, the chronic tiredness, constant migraines, inability to sleep more then few hours and joint pain was explained as just growing up and my lifestyle choices {Should I have spotted this earlier? Yeah i looked unusually different from my family but there was no reason to think that was being caused by anything other than just developing. I should have been quicker to notice that my feet were continuing to grow well past the age of 21 - at 18 i wore size 8/9 shoes however just 10 years later and i would be wearing size 12!}

All the physical ailments mentally took me into some pretty dark places and it really was the mental side that was the most difficult to overcome. I pretty much became a closed shop and I started churning all these what-ifs through my head. {What could I have achieved if i wasn’t so tired all the time? All my willpower for the achievements i have made without the debilitating illness - I could have been the "king of the world"?  What would I have looked like without all the excess growth? All the effort to get fit but my body was predisposed to swell and put weight on? …. Karma? Why had this happened to me?}

With the rarity and all the potential for variation in symptoms when you have a pituitary tumour, it was extremely difficult to find information that I felt was relatable.  With this illness being so scarce and my circumstances so unique that i struggled for a confidant who could understand what I was faced with. The turning point for me was when it was suggested I look into the Pituitary Foundation , the wealth of information they made available really dragged me out on the other side. They offer a library of documentation on what it would be like living with this condition going forward {While I have successfully had the tumour removed and have been in recession for 18 months now, damage to the pituitary gland has been permanent. I have to take measures such as Testosterone replacement therapy for the rest of my life, frequent blood tests to ensure it doesn’t return etc}; hire and offer support from specialist nurses who really understand the life changing nature of the illness; run excellent seminars (and socials) where they spread awareness and advice from leading medical experts in the field of endocrinology and put patients in contact with other sufferers via events/forums where I can humbly say experience is always the best reassurance.

The Pituitary Foundation is not the biggest charity but that does not mean their work is any less important for the patients who come to rely on them. I will always be forever grateful with how they assisted and continue to help me - for that reason, while only a small gesture, I am incredibly excited to get the chance to try and give back just a little bit!

Thanks for reading my story! Ketan