Welcome to my blog! You can start by getting to know a bit more About me or for a more detailed explanation of how I was diagnosed, have a read of my posts The Journey to Cushing's Syndrome and Part II the saga continues. Bienvenue sur mon blog! Vous pouvez commencez par decouvrir Mon Histoire avec Cushing's

Saturday 24 November 2012

D Day

So I finally heard back from the hospital and I will be meeting the Multi-Disciplinary Team (MDT) on the 11th of December to discuss my IPSS results and what my treatment should be. The nurse I spoke to on the phone did say that they are suggesting another pituitary surgery which was to be expected since the source of my Cushing's is pituitary. However, we will be discussing alternatives including Signifor, the new medication, and bilateral Adrenalectomy (BLA). I want to make sure I explore all my options as the long-term effects can be very difficult depending on my choice. Every procedure carries its own risks and complications and nothing is every 100% sure. After all, people can die from even routine procedures like appendectomies. I know that no choice will be perfect but I want to make sure I make an informed decision and that the doctors realise that I want to be involved in the treatment and management of my own disease. After all, I'm the one who's going to live with the consequences for at least another 40 years (I hope!).

I am grateful that my parents are coming to visit me over Christmas and my mum is even flying over early so she can attend the meeting with me. I think it will help having an extra pair of ears listening to what the doctors say. Sometimes I feel overwhelmed by my emotions....

If we decide to go ahead with surgery (which is looking 80% likely), it will probably happen quite soon after Christmas. Although I'm glad I will be able to start the new year on my road to recovery, it also means that it will upset my studies, AGAIN! I'm starting to get used to it but doesn't make it any less frustrating. To think I'll be nearly 32 by the time I'm fully qualified!? I guess I should take comfort in knowing that I will have been  gaining some work experience (even if it has been mainly part-time) and will definitely have extensive life experience that no college or university can teach. It's a good thing I chose the field of Psychology. Probably one of the few professional areas where age is actually an advantage!

Tuesday 20 November 2012

Spice up your life

Well after all the drama of the last few weeks and the still impending test results, at least there has been some slight joy in my life lately. I finally brought home my new dog last week. Her name is Pepper! Her racing name was Hot Stepper and she seemed to respond to Stepper in the kennels so I wanted to change it to something that still sounded familiar. Though to be honest she's only just starting to respond (slightly) so I could probably have changed it to something else. Never mind, Pepper is a cute name though apparently extremely common in the UK as about 3 people have already told me that "OMG, [insert relative's name here]'s dog was called Pepper!".

Monday 12 November 2012

What doesn't kill you

There is an old adage that I often use which says that what doesn't kill you only makes you stronger. I wonder if the strength you gain is proportional to how close to death you come or how much you actually suffer. Because if it is, I should be as strong as an ox by now! (Or at least a very strong cow!?)

On Thursday the 1st of November, I checked in to the National Hospital for Neurology and Neurosurgery in Queen's Square, London. I showed up at 9am, having fasted from the night before and mentally ready for the Inferior Petrosal Sinus Sampling (IPSS). But I don't think I was prepared for the day ahead of me. Firstly it turns out that contrary to what was stated on my letter, I did not need to be there for 9am as I wouldn't have the procedure until 2pm. Which also means that I didn't have to start my fast until later that day. But because the nurses were unsure and as usual no doctor was around to give correct advice, they refuse to let me have anything except a small glass of water.