Thank you for visiting, I hope you will find this blog of my journey both interesting and inspiring.

Sunday, 7 October 2012

Light across the Water

As you will have read I have felt a little more despondent this week; a combination of side effects caused by new drugs and a encroaching shadow of my next tests. I am sure I am much changed as person through my experiences and will carry on to grow and develop this way; indeed I will strive to do so. These changes are not about trying not to be me but rather be a better me and more authentic me, defined by who I am and what I do rather than how I look or what I own. It is my opinion that by doing this that my life will be more fulfilling,  I will be in better position to help both those I know and those I have yet to meet have more fulfilling lives and perhaps make an impact on the greater society which I see as currently diving off a precipice of unhappiness like lemmings!! A pipe dream perhaps?

This is where I want to spread the Imagine It ethos with you www.imagineit.org.uk where we want to show you that there is more to life than being a slave to media, labels and negative thinking. However I won't lie to you this isn't an easy process, if it were, everyone had figured it out by now, no it takes grind, determination and inner strength. I like anyone get tired of trying especially when physically run down and feel like all I do is hit brick walls.

I have some amazing medical contacts but at times it is easy to rail against them, get angry and make villains of them! The truth is that, tests do go missing, the outcomes are not their fault, and that not one of them actually wished this upon me. Frustrating as this situation is ACC is a very rare cancer and there is little to be done! I had a long discussion with my GP yesterday and he admitted his own feeling of redundancy at only being able to do so much. It is also a frustration to all of us that my age means I am even more unique than the "normal" ACC patient if there is such a thing, in fact I may be the only 28 year old female with stage IV? Or even the "normal" cancer patient who tends to be older.  How many of those terminally ill people email their doctors asking if they can go skydiving? Start running? Have a bucket list that include shooting a gun, jet skiing, climbing a mountain? Or probably the biggest thing on there, Drive Route 66?

When I feel down I see these things slipping away from me, when I get weaker, when I wonder how much time I will have and if I will leave others feeling they need to complete these tasks for me? Not helpful thoughts I know but they can sink in their claws regardless. I have plans for between now and Christmas for many things on the list and the one I am most excited about is our anniversary trip to Rome. Having a degree in Archaeology the layer upon layer of attraction need not be explained, plus if I am well enough the food and wine!! The city includes at least two bucket list points in the form Colosseum and Vatican too! I am really really excited to spending our anniversary there, my husband loves to travel and last year we spend our honeymoon in Paris, a perfect trip after the perfect wedding. We owe so much to everyone to helped that happen the way it did in just five weeks as once more I find the same situation of not knowing what will be around the corner. Yet through love and luck we found no need for compromise only perfection. http://poppiesandepiphanies.blogspot.co.uk/2011/12/serendipity.html

I have digressed from my point however. I have been worrying a lot about how these next tests will go, how many side effects will involve me facing up to change or making immense efforts to hide them. For example if I don't want to look pregnant on a evening out, I have to not eat more than a few measly mouthfuls that day. Not my idea of fun. Or in the extreme go back to IV chemo, retire to the sleeping and hope thatit has enough effect to have another break or maybe that is the start of my decline... morbid huh?

Despite all these worries my husband and I are striving forward with the Trio of Half Marathons Challenge; well he is, currently having come in from an early morning run and is icing his knee. Later it will be the gym and in exactly a weeks time he will have already started The Great Eastern Run. We have had some really generous sponsorship from all over the world and we have had some press attention too but the voices inside me scream this is not enough. "What can I do make people sit up and pay attention?" Then out of the blue someone did. A very specific someone. This morning we received an email from someone who is to me a mythical figure. Ever since I got ill and looked in my condition there is a big name that will reoccur time and time again.

Try it now on Google "Adrenal Cancer Dr": Who is quoted in all the top results?

The answer: Dr Gary Hammer.

This morning I received an email from him, acknowledging my husbands efforts and heart for the cause. I couldn't quite believe the story had made it that far or that this Doctor had taken the time to contact us. Below I include a link he included to us, I find it a comfort and a reassurance that when times are bleak light can appear from the most unexpected of places.

"In short I am deeply moved by your presence

I share the following:

I wish you all you dream


Gary D. Hammer, M.D., Ph.D.
Millie Schembechler Professor of Adrenal Cancer
University of Michigan

Director - Endocrine Oncology Program
Director - Center for Organogenesis"

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