Postponed

For those of you who follow my blog you may be wondering why I haven't given you an update following my appointment. Well it's because my appointment was postponed to the 18th of December. They actually told me a little while ago but I forgot to post it on my blog.

Thanks to those of you who expressed concern and asked about whether I had received any news yet.

I will definitely provide you all with an update after the appointment.

In the meantime, you'll be pleased to know that I'm doing quite well. I've been super busy working on several projects for Genetic Alliance UK, a charity with which I have been doing work on and off for since 2009. It's interesting work involving research and is for a great cause. They represent patients and patient organisations concerned with genetic diseases. They also have a project called Rare Disease UK which is specifically concerned with rare diseases. So you can imagine why I am so happy to work for this charity and thrilled that I am able to contribute something useful.

Also, Pepper (my beautiful greyhound) is settling in well. She's starting to show her personality a little more but is still a very chilled, easy going dog who adores cuddles and food. They do say dogs resemble their owners....

So I leave you with some pictures of my beautiful new best friend:

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!

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!".