Not all leaks are enlightening....

SOOOOOO much has happened in last few weeks I barely know where to start! I guess the logical place is to start from the beginning.

As you may recall from my last post, I had my fourth neurosurgery on the 16th of September. This time I had a complete hypophysectomy (they removed ALL of my pituitary gland). It was tough! I had a real hard time coming out of the anesthesia, feeling very rough and even throwing up several times. But thanks to a strong cocktail of painkillers and anti nausea meds, I was feeling "normal" within a few days. On the 20th of September, exactly 3 years since my first neurosurgery, my specialist nurse told me that my cortisol results had finally come back low enough to consider me cured. I was over the moon!!

By Saturday I was home and I thought this was the beginning of my road to recovery. Boy was I wrong...

Fourth time lucky?

Hey all! So it's been a while since I posted (seems like I've been saying that pretty much every post!) but I've been pretty damn busy. Been working hard at uni and freelancing for my charity. Plus, I've actually been having something which resembles A LIFE!!! Now don't get too excited there folks, it's nothing to write home about (though I guess I found it worthy enough for blog writing) but it's a hell of a lot better than what I had before.
Basically in the last few months I've been really feeling better energy wise. The fact that I've lost over 20kgs might have something to do with it but I also think it's thanks to the correct medication dosage I'm now on. If you remember the doc started me on cortisol lowering meds and after surgeries 2 and 3 messed up my pituitary I've also been replacing a whole host of other hormones. Although it's a pain having to take so many pills, it's totally worth it. I'm able to walk an average of one hour every day, I'm not sweating as much and my mood has been pretty stable. All in all, I've been feeling pretty awesome.

Groundhog day

Monday last week, the 8th of April was Cushing's awareness day. Unfortunately because I was traveling from London to Hong Kong I was unable to write a special post or even put anything on Facebook. By the time I landed in Hong Kong it was late at night and I was so exhausted that I just couldn't bring myself to write anything. But as one of my fellow cushies pointed out, EVER DAY is Cushing's awareness day for us!! Because we suffer from this terrible disease every single day. In the last 10 or so years I've been suffering from symptoms, not a single day has gone by when I have felt "normal".

Leave a message

Apologies for not posting on Wednesday evening as promised but I just couldn't bring myself to do it. It is with a heavy heart that I write this post already and if I had written it on Wednesday it would have been filled with anger and despair. That is not to say that this post will be full of joy and optimism but at least after a couple of days I've been able to digest the bad news and vent my emotions out.

3 is NOT my magic number

I wish this was a good news post but unfortunately it appears the 3rd time wasn't that lucky after all. That isn't to say that all is lost but so far it's not looking very encouraging. Cortisol level day after surgery number 3 was 133 which had us very hopeful but unfortunately, after that the following days were all in the 300s. On Friday, the day I was discharged, it was 330 which was a little lower than the day before but still not low enough to consider me cured.

3rd time lucky?

Well it looks like luck is not really on my side! I had my 2nd surgery on Friday the 25th of January. It went well, no obvious complications though I did have a diabetes insipidus scare for a couple of days, but it failed to cure me. 

My cortisol post-op was as follows:

• Day 1: 800ish
• Day 2: 400ish
• Day 3: 189
• Day 4: 136
• Day 5: 200
• Day 6: 400

What a disappointment!! After Tuesday's level of 136, I really thought it was going to crash and I'd be able to go home so when I found out on Wednesday that it was going up it felt like a shot to the heart. The nurse came to tell me and said the neurosurgeon would come speak to me herself about what we should do next.

The day before I had been told that there was a chance I might need a 3rd operation but the nurse said she didn't think that would be the case for me! Boy was she wrong but in a way, I'm grateful she alleviated my fears as it allowed me to sleep that little bit more soundly that night.

Anyway, back to Wednesday evening. At about 8.20pm my surgeon finally arrives to my room, has a seat and informs me that she does firmly believe that a 3rd operation is necessary and that this time they might even need to remove up to half of my pituitary. Now I am an information hoarder and I like to read up a lot on my disease and treatments etc, so I know that removing half of the pituitary can have serious ramifications on my hormone functions (as I mentioned in my previous post). But I have to say, after speaking to my surgeon for about 20-30 minutes, I was convinced. Both she and my endo truly believe this is my best chance at a cure and I trust their judgement. They are both some of the most experienced and well respected medical professionals in their respective fields in the UK and I couldn't be in better hands.

Sure, I'm worried about what pituitary function I will have left but if I'm rid of Cushing's it will be the start of a new and better life for me. All the other hormones can also be replaced and strange as it sounds, I will have a longer, healthier life even if I'm on 5 pills a day. Because at the end of the day, Cushing's kills!

So this evening I'm heading back to the hospital. I've been at home the last couple of days as I asked for a "weekend leave" so that all this could sink in and I could digest everything that was happening. I wanted to spend some time with my dog and chat to several of my friends and family on the phone and using Skype. I will be having my 3rd surgery tomorrow morning, Monday the 4th of February. Let's pray that, like my driving license, it's 3rd time lucky for me and I'll finally be rid of this stupid disease... 

Surgery, the sequel

Well folks, the time is now! In a couple of days I'm being admitted to the National Hospital for Neurology and Neurosurgery for my 2nd pituitary surgery. I must admit, I'm feeling a little apprehensive but also kind of looking forward to it. I mean, of course I'm worried about the risks and possible complications but I'm also excited about the possibility of finally being cured. Nothing wrong with being optimistic and hoping for the best!

I'm realistic, I know the odds are against me and I'm likely to suffer from some pituitary damage and loss of hormone function, but the thought of getting some of my life back keeps me strong. My mum is arriving this evening and she'll be here for 6 weeks to help with my recovery. I'm grateful to have the support of my friends and family, and feel blessed to be alive and loved. I'm also really happy that Pepper (my retired greyhound) will be here to help keep me motivated during those long weeks when I feel terrible and all I want to do is sleep. 

I've decided I want to document this time better than the last. In 2010, I took a few photos here and there but didn't keep a strict journal. This time I'm gonna do it right! Take a photo of my face every day over the next few months so I can really see the changes. When you see yourself in the mirror every day it's hard to notice and you sometimes feel defeated. This way I'll have photographic evidence!

If I'm bold enough I might also take full body shots. Don't worry, they'll be fully clothed...

On a positive note, the last few nights I've been having dreams in which I'm back to my normal size. I'm taking it as a sign that I will soon be able to find clothes that fit me on the high street and begin exercising again! This year I AM making New Year's resolutions and they're gonna be the typical diet and exercise ones but at least this year they might work...

2012, a retrospective

Well here we are, the end of the first week of 2013 and a good time to look back on all that's happened in 2012. But let me start off by informing you all that I received my letter from the NHS and will be admitted to hospital on the 24th of January. I'm guessing that means my surgery will be happening on the 25th. I'm actually quite impressed by how quickly I got a date as I was expecting it more to be around early February. So my mum flew back to Hong Kong with my dad yesterday and she will be returning around the 23rd so as to spend time with me whilst I'm at the hospital and during my recovery. Last time she stayed around 6 weeks and I can honestly say it was a blessing having her around. 

2013, a promising year

It was my birthday yesterday! I turned 28. I can't believe I'm already edging closer to my 30's. I honestly feel like I should get a refund on my 20's! But I'll save my ageing rant for when I actually turn 30...

I wanted to let you know how my appointment went. On Tuesday the 18th I met with my endocrinologist, a specialist nurse and a neurosurgeon. As you may recall, I've mentioned in previous posts having several questions I wanted to ask regarding my treatment options. For example, why was I not being offered medication or an Adrenalectomy? So on Tuesday I finally saw my usual doctor and was able to ask all the questions I wanted. In fact, I was really impressed by how informative and sensitive my endo and the neurosurgeon were. They both took the time to explain their findings to me and why they felt that a 2nd pituitary surgery was the best way forward.

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!".

Quick update

Just a quick update this time. I've not forgotten about you but I've been pretty busy actually having a life (nice change!) My doctoral course has started, I'm attending more social events and have started going to the gym 3 times a week so my days are starting to fill up which is nice.

So the update is that I have a date for my IPSS. I have a pre-admissions assessment on Tuesday the 23rd of October. This is when you undergo a series of tests that check that you are suitable for the procedure e.g. blood pressure, weight, etc... Then, provided I get the all clear, I am being admitted on the 1st of November. The procedure will take place in the afternoon and should last a couple of hours max. I am required to stay overnight so they can monitor me. 

I've had mixed reviews about this test with some people saying it's a horrible experience and others saying it wasn't so bad. Thanks to a friend of mine I'm able to think about it in a positive way and am feeling more relaxed about the idea now. She encouraged me to visualise it as a positive experience by switching my way of thinking. Kinda like going from seeing it half empty to half full. So instead of thinking: "OMG, I'll be able to feel everything" (in a panicked, nervous way) think: "Wow, how fortunate I am that I'll be able to feel everything, they won't be doing anything without my knowledge" (in a calm, optimistic way). It's easier said than done but I've been practising every day and I really feel like I've made some progress. So much so that I will not be asking for full sedation, maybe just a little something to calm my nerves. We'll see...

US vlog

I have decided to attempt to document my US trip using video blogs or vlogs. I will try and upload a video to my YouTube account (CushieSteph) every day or at least whenever I have access to the internet. The new videos should show up here on the blog in the little video box on the left hand side. But the easiest thing is to subscribe to my YouTube channel: www.youtube.com/user/cushiesteph

I'm really looking forward to this trip as I will not only be attending my friend's wedding and seeing my sister and a friend of mine who recently moved to NYC, but I will also be meeting up with some fellow Cushies.

I can't wait to meet more women who have been through and are still going through the hell that I endure. I hope that we can share and learn from each other.

Back in London town

It's been over a month since I last posted and a few things have happened since then. Firstly, I flew back to London on the 15th of July to attend my endocrinology appointment on the 17th. But after finding out that I was suffering from recurrence I had pretty much decided that I was moving back to London anyway. Although this was slightly disappointing as I'd hoped to stay in Hong Kong a little longer, I just felt more comfortable being treated in London where they have most of my medical history and more importantly, I speak the language (i.e. English).

Though I was unable to see my usual endo and had to wait for about an hour, the doctor I met with was very friendly, understanding and took the time to listen to me. He also confirmed (again) that he agreed with the diagnosis of Cushing's recurrence. He then went on to inform me that he wanted to act on it fairly quickly for 2 reasons. 1) Medication to treat Cushing's is toxic for your liver and very difficult to dose accurately therefore it is highly discouraged and 2) the neurosurgeon that did my first surgery and is arguably the best neuro in the UK is retiring soon. In fact, he told me he was retiring in 3 months which kinda freaked me out because I knew that I had my trips to France and the US planned and I really didn't want to have to cancel them. Luckily it turns out he isn't retiring until December but I only found that out a couple of days ago so until then I was stressing wondering whether I'd have to cancel my US trip and miss out on my friend's wedding.

So on the health front, the next step is a T3 MRI which is happening at the end of the month and if the tumour still isn't visible then I'll probably have to undergo IPSS which I think I've explained before. Basically it's a test where they thread a catheter up your thigh all the way to your brain so that they can take blood samples along the way and see where your body is excreting the cortisol. Apparently the procedure is as nasty as it sounds because you have to be awake for it! Needless to say, I pray I won't have to go through it...

Apart from the health worries (which have become part and parcel of my life), everything else is going pretty well. I am so proud to have been accepted on a Counselling Psychology course. I was supposed to start in September but which everything going on I think that I will be requesting for a January start instead. I think it's more sensible because I'm likely to have surgery in the next few months and recovery is no joke.

Roller coaster of life

We're always told that life is like a roller coaster, it has its ups and downs. But I don't think I ever realised how high up or how low life could really go until I was diagnosed with Cushing's. In the grand scheme of things I can't really complain as I'm still here, still living and breathing. But to be honest I wouldn't mind having a go on the merry-go-round for a while. The wooden horses only go up and down a little but mostly go round and round in circles. Sure it would get boring, but the slower pace would be nice once in a while.

I guess it just seems like since I've been suffering from Cushing's things go from one extreme to the other! And I'm not just referring to my mood swings...

Just a few days ago I was ecstatic because I found out that I'd not only completed my Masters, but I'd gotten 9 As and only 2 Bs meaning I would be awarded a mark of Distinction. And today, I find out that my Cushing's recurrence has been confirmed. I failed to suppress on both the low dose and high dose dexamethasone tests. It was such a crushing thing to hear. Sure I was somewhat prepared but still... You always hold out hope...

Forget you

Here it is, Friday's Cushie music video. I'd like to say that I will keep making more but I'm not sure I will still have inspiration. But I will definitely try.
In the mean time, please enjoy this one and feel free to SHARE with as many people as you want/can.
It's important to raise awareness for Cushing's whether it be through a humorous way like this or by talking about the more serious side.

Have a great Friday and weekend!

BSc, MBPsS and MSocSc.

It's been a while since I last posted and I apologise for that. I went from posting every day in April to barely posting once a month! But I've been MIA for good reason. A lot has been happening especially as my Masters has now come to an end.

This challenging but extremely rewarding year culminated in a 3 day workshop in which we were encouraged to explore our inner selves and get in touch with our strengths and weaknesses. We did several very interesting exercises which I will go into in a different post. Sufficed to say that I realised that I'm stronger than I thought and that no matter how much others try to break me down, I will still keep going. The title of this post are actually the initials I can now add after my name! They stand for Bachelor of Science, Graduate member of the British Psychological Society and Master of Social Science. I achieved all of these in the last 2 years whilst simultaneously being diagnosed with Cushing's, undergoing neurosurgery and moving 6000 miles across the globe. Not too shabby if you ask me....

I can't believe how quickly this year in HK studying has gone by. It seems like only last month I was packing up my things in London and getting all excited about being back in the city I grew up in. And now, here I am, making a blog to sell all the stuff I bought when I moved here. If any of you happen to live in HK and are interested in some cheap items check out the blog: stephstuff4sale.blogspot.com

September in the USA

I will be publishing a new post tomorrow but today I just wanted to let you all know about the map I added to the bottom of my blog page. It's a big map of the USA and includes places I intend to visit when I go there in September.
If you fancy meeting up with me, are willing to travel to meet other Cushies or can offer me a place to stay, please add yourself to the map.

Don't forget to include your email address so that I can get in touch with you. (don't worry, only I will be able to see it!)

You can also access the map by clicking HERE.

See you in September!! :)

The Cushie song

Today is Friday and I have an extra special treat for you all. I've been working on this for the last couple of days. It's my first real video project and I did everything from video to audio so please bear with me.

I also wanted to thank those of you who joined and liked our new Facebook page (http://www.facebook.com/cushiesunited) and our YouTube channels.

Mine:
http://www.youtube.com/user/cushiesteph

and our CushiesUnite channel:
http://www.youtube.com/user/cushiesunite

I hope that you will pass all of these links and videos on so that we can all work towards raising awareness for Cushing's.

So for now, enjoy your Friday treat! I wanted to remind people that it's essential to maintain your sense of humour even when life throws you a curve ball.