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.

Embrace the highs and push through the lows

So it's been a pretty tough week with a follow-up appointment on Tuesday where I found out I had to have all my pituitary removed, but today has been a good day so I decided it would be a good day to post.

I often find that if I try to blog when I'm feeling down, all that comes out is sadness and venting. I don't like to put too much negativity on my site. Not to say that Cushing's isn't a bitch to deal with and the reality is that there's a lot of negativity involved. But I think that the other Cushies out there who might read this have enough pain and suffering in their lives that they don't need to hear all the doom and gloom in mine too.

I think it's important that when I feel good, I share my positivity and good mood with others. After all, they say laughter is contagious so maybe I can send my good vibes out too!?

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".

Still here!

Hey everyone! Quick post to let you know I'm still here, still around fighting the good fight. I haven't posted in a while as I've been pretty down and to be completely honest a bit depressed after this whole ordeal, but I'm starting to see the light at the end of the tunnel again and am slowly regaining some enthusiasm and positivity. That's not to say I've completely recovered all the energy I had pre-surgery, especially since I'm having extreme nausea and fatigue in the mornings. But I'm getting used to life with shit loads of medication to take morning and night, and I realise my life could be worse. At least I'm still here in one piece!

At the moment I take about 12 pills a day which address my blood pressure, stomach acidity, bone density,  thyroid and cortisol. I will soon have to add a few more as my periods haven't returned and my sex hormones are pretty much down the toilet. Luckily the growth hormone readings aren't too bad so that's just being monitored.

The meds I take to control my cortisol seem to be working fairly well so I've decided to stay on them for a few months so my body can have a rest. Once I feel things have stabilised and I've lost a few kilos, I'll have to think about having the BLA (removing my adrenal glands). But I'm in no rush as it will mean having to take another couple of months out of my studies. For now I'm just going to try and enjoy some "normal" time, starting with spending 10 days in Hong Kong in April with my parents. Hopefully I'll be able to relax and spend some quality time with family and friends when I'm there. When I return, it's a busy term at school for me, doing 3 modules to try and catch up on time lost.

There was some good news for me last week. I got back my paper I handed in for my first module last term. It was a year 2 module I completed online on the topic of Existential issues. I'm proud to say I got a distinction. I was only hoping for a pass as the grades you get don't matter at doctoral level but I must say, the ego boost was nice. Good to know my brain still functions well and that some things are still right in the world. If you work hard, you will receive the recognition you deserve. Now if only my health could follow that principle...

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.