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

Tuesday, 24 July 2012

A little bit of numerical panic!

Since my last round of chemo I have managed my fatigue and my state of mind so much better than before. I have felt more content to go at a slower pace and rest more. It is certainly true that the effect of treatment is culmative; for those of you who remember reading about my first round I was back on my horse after a couple of days and completed the 11 mile Lexham ride a week later. Now things are slower; I am into week three and whilst I have been out and about I still suffer from a huge energy debt afterwards, sometimes for as much as three days!

I hope this means that my treatment is working. At the last scan there was certainly some effect and my cortisol levels have dropped to what can be considered an almost normal level. If that is the case then I can be patient with this fatigue. However life does like to throw us all a curve ball but when I feel low it seems me more than most. I received an email from my endocrinologist saying could I please come in and have a blood test as a the previous one had thrown up an odd result. She wouldn't tell me what this "odd" result was... which was worrying.

Of course of I went. I was tired having had a very busy day previously and had to sleep in the car on the way there (don't worry I wasn't driving!) After a lot of hanging around and a few needles, although I have to say that an needle in the crook of my arm is nothing these days, I'm pretty sure I could do it myself.... It is the hands thats I dread!! Perspective for you I suppose when you can have a preference for where you have your blood taken! Anyway I ramble. My doctor came to see me and told me that my blood test had shown a steroid profile of 900. Previously it was about 100 so 900, thats a leap. A leap into mania and panic. I had to go hide in the toilets and have a private cry... my mind was absolutely whirring as to what could have caused this!

Does it mean that my drugs aren't working? And if so, which one? I can't tolerate that level of cortisol; it will quite literally kill me! Or could it be that the tumours are producing a different type of steroid? What and why? Surely the chemo should stop that!! In short not a good day, I felt horrible and that I had to swallow it in order not to panic anyone else. Sometimes I think the amount of mental strength I exert each day is where my energy goes!!

24 hours of internalised pain before sweet, sweet relief. An email from my doctor pronouncing my steroid level was 90, not 900 and it was highly likely to be lab error. Thanks lab monkeys: that one "0" couldn't have tortured me much more. I know I couldn't feel any difference or symtoms which would have undoubtedly been there with a steroid level that high, but it is so hard to persuade yourself that the numbers are wrong. I mean most of the time I can't actually believe I have terminal cancer... it can't be true. In fact I have started to think that if I go far enough into denial I will trick my body into acting upon the the belief that I will get better. Miracles do happen right??


  1. I know we are all human but how cruel of them to make an error like that and have you unnecessarily worrying!!! Keep positivily thinking and in denial who knows wot benifit it can have on your body, our minds are very powerful, im trying to get into that frame of mind myself! Your a fighter! Take care

  2. 'In fact I have started to think that if I go far enough into denial I will trick my body into acting upon the the belief that I will get better. Miracles do happen right??' - I absolutely love these sentences, you are on the right road thinking like this lovely lady as miracles do happen - keep it up! ;-)
    Much love, Kaori xx