It’s not how many times you get knocked down

As I look back at the last twelve months, since i was diagnosed with a pituitary gland tumour under the brain and a rare condition called Acromegaly, i literally can not believe how much my life has changed! Apart from the obvious, i’d say at least 95% of the change has been for the better :)

For some of you visiting my blog we may have a few personal things in common or you are even are a friend or family member of someone affected by a pituitary gland tumour or a related condition. Before you read on about where i am currently at, I wanted to quote one my mantra’s which i borrow from George A. Custer (1839-1876) U.S. Military:

It’s not how many times you get knocked down that count, it’s how many times you get back up”

So much of what i have experienced this last year or more has been psychological, emotional and spiritual. Don’t get me wrong it’s also clearly physical but what i’m getting at is that it’s how we deal with the things that come our way that determines to some extent what happens tomorrow, next week, next month and next year etc.

I’ll admit that there have been times when i’ve hit rock bottom, I have relied heavily on my family and friends but most of the battles i have won have been on the inside.

So if you are going through something similar to me or worse it’s not empathy or sympathy you need, it’s probably time and a firm grasp of reality that you need to keep hold of along with the ability to draw strength from somewhere to fight on.

I’ve mentioned where my strength came from and don’t get me wrong i’ve had up’s and down’s but throughout in those moments of reflection, i’ve spent time second checking my thought processes and staying positive. At times my weird condition seemed to develop its own inner voice muffling out my own thoughts. It took time, support and the fabulous NHS but I won and i am thankful for where i am today :)

Ok so i’ve waffled for a bit but i hope this all makes sense :)

So where am i up to.

In November 2012 i had neurosurgery to remove as much of my pituitary gland tumour as possible to stop the Acromegaly and other things happening. The operation went really well but around March 2013 some residual pituitary tumour became active and put the acromegaly into first or second gear again. I had a few months of a new treatment which ended in August 2013. Then i had to have a month or more treatment free, have an mri then start next set of treatment. The MRI came back positive but there was a hint of either residual tumour or unknown tissue in the area of my previous tumour. Balance this with heightened IGF1 and various symptoms such as tiredness, concentration and lethargy, it was clear that there was some pituitary tumour and acromegaly activity :(

In October 2013, i started monthly injections of Sandostatin LAR 10mg. The plan was to see how i get on in terms of reactions etc then based on the results increase the dose for a few months.

So how have i been?

Well only one word will do …….. FANBLOODYTASTIC! :):):)

My IGF1 is still hovering around the 350 mark which is far too high and after next weeks growth hormone day curve and blood tests they will probably increase my dosage and again see how the levels do.

So far i have had no negative reactions to these injections and i feel fine. It seems as though my energy levels are back up, i’m more alert than i was and i have a greater sense of wellbeing albeit this things have been on the up for a few months now ;) Oh my testosterone has finally started to increase too as that was about to get some focus at The Christie.

At my last appointment with the finely socked Professor, he mentioned that i was a candidate for gamma knife radiation to kill of my little tumour but due to my age, some risks and the fact that i have responded to chemical treatment prior he was happy for me to stay on chemical treatment for now. All good.

Oh yeah i mentioned changes in my life well the biggies are i’m running longer distances than i ever, i started university and am doing a degree which I am loving! Lucky to have met a fantastic group of people, i’m a student rep for our school of science and i’m also not the oldest mature student :) Life is good.

So what else????

Well the last bit of positive news is in relation to my jaw prognathism which was caused by the tumour and acromegaly spitting out super excessive growth hormones. Basically, my jaw and teeth alignment has changed over the last few years and my bite has gone well wonky.

After 12months of support from my fabulous consultant at The Christie, i got in front of an extremely accomplished and respected maxillo facial surgeon and his super orthodontist. The news is that they agreed that they should take action and work on the miss-alignment. They acknowledge that i have the tumour and elevated levels but didn’t want me to wait any longer which was great! So in January 2014, i have having braces on both’s sets of teeth for about a year or so then i’m having bilateral jaw surgery.

Basically, once the teeth are all aligned they then break both jaws (nice) and put me back together again. It’s a lengthy process but whilst i’m at university is pretty much ideal and university has been fab too.

So lots of change and i’m doing really well. Sorry if i’m rubbing this is but this is as much my diary as it is a blog. Positive thinking all round too :)

Thanks for reading.


Oh i have already signed up for the Wigan 10k next year and applied to The Christie to run the Great North Run for them next year too!