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...

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!

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!

Day 30: This is not the end

This is not the end

Well here we are, day 30! I can't believe I got through this entire challenge blogging every day. I only resorted to other people's material on 4 or 5 posts. I must admit, I'm pretty proud of myself. And I'm so pleased with the response I've been getting. My blog hasn't exactly gone viral but I know that a few people have been reading it and they've given me some great feedback. Even my own parents have told me that they kept learning new things. This is a very positive sign for me and I'm so pleased I took part in this challenge.

Day 29: Overcompensation and the inferiority complex

Overcompensation and the inferiority complex

One thing I've noticed about a lot of movies or TV series, the fat person is always portrayed as funny and struggling with their weight. That is, if they want us to like the "fat person". If they don't, they will be sour, lazy, overindulgent people who seem to lack self control. Where is the overweight, well adjusted woman who enjoys having her large pizza but is also capable of working hard and being productive? Don't tell me she doesn't exist because I meet these kinds of people all the time!
The reality is that we are made to believe that being fat is something we should be ashamed of and should therefore compensate for in other ways. I'd like to say that I have not been brainwashed by this notion especially since I KNOW that my weight is due to a health problem however I'm just as "weak" as the others. What I mean by this is that because my weight is something I feel I have no power over and am very ashamed of, I tend to try and overcompensate for it in other ways.

Day 28: Which came first, chicken or egg?

Which came first, chicken or egg?


One of life's philosophical questions is: Which came first, chicken or egg? One of my evolutionary psychology lecturer asked us this question back in year 1 of my BSc and we came to the conclusion that it cannot be answered. After all, it appears one cannot exist without the other.

Day 27: Radiation therapy

Radiation therapy

Radiation can be given in small doses over a six-week period, or by a technique called stereotactic radiosurgery or gamma-knife radiation.

Day 26: Bilateral Adrenalectomy

Bilateral Adrenalectomy a.k.a. BLA

Many patients opt to have a BLA after several unsuccessful pituitary surgeries or when a pituitary tumour is not visible. Sometimes BLA is the first option if the Cushing's is caused by tumours on the adrenal glands. In my case, the tumour was on the pituitary gland but I don't know where the source of my recurrence is.
I have met several people who after 3 pituitary surgeries finally have a BLA as they still have Cushing's symptoms.

I couldn't find a good video explaining what BLA is as the only videos on YouTube are of the actual procedure which again, freaks me out! Feel free to have a look for yourself but I'm staying clear.

Here's a description from a website:

Open adrenalectomy
The surgeon may operate from any of four directions, depending on the exact problem and the patient's body type.

1. In the anterior approach, the surgeon cuts into the abdominal wall. Usually the incision will be horizontal, just under the rib cage. If the surgeon intends to operate on only one of the adrenal glands, the incision will run under just the right or the left side of the rib cage. Sometimes a vertical incision in the middle of the abdomen provides a better approach, especially if both adrenal glands are involved.
2. In the posterior approach, the surgeon cuts into the back, just beneath the rib cage. If both glands are to be removed, an incision is made on each side of the body. This approach is the most direct route to the adrenal glands, but it does not provide quite as clear a view of the surrounding structures as the anterior approach.
3. In the flank approach, the surgeon cuts into the patient's side. This is particularly useful in massively obese patients. If both glands need to be removed, the surgeon must remove one gland, repair the surgical wound, turn the patient onto the other side, and repeat the entire process.
4. The last approach involves an incision into the chest cavity, either with or without part of the incision into the abdominal cavity. It is used when the surgeon anticipates a very large tumor, or if the surgeon needs to examine or remove nearby structures as well.

Laparoscopic adrenalectomy

This technique does not require the surgeon to open the body cavity. Instead, four small incisions (about 0.5" [1.27 cm] diameter each) are made into a patient's flank, just under the rib cage. A laparoscope enabling the surgeon to visualize the inside of the abdominal cavity on a television monitor is placed through one of the incisions. The other incisions are for tubes that carry miniaturized versions of surgical tools. These tools are designed to be operated by manipulations that the surgeon makes outside the body.

I think that the majority of patients have Laparoscopic surgery now (thankfully!!)

So what are the pros and cons of this one?
Again, apart from the obvious risk from the surgery itself. Cons:

• Longer recovery time
• Bigger risk of infection as there are more wound sites
• Lifelong medication (your body will no longer produce cortisol therefore you must take medication to replace it)

I actually struggle to find many pros apart from the fact that it has high success rate of curing Cushing's! I know a few people who have had a BLA and now lead happy, healthy lives. But the truth is, this procedure scares me. The idea of removing my adrenal glands completely.... Well let's just say I'm exploring my other options first.

Day 25: Transphenoidal Surgery

Transphenoidal surgery


So, as some of you may recall I already underwent transphenoidal surgery back in September 2010. The procedure itself was not really painful but recovery was a long and painful process.

Rather than explaining it in words, I have found this video on YouTube which is very easy to understand and provides some good visuals. I opted not to show you a graphic/live version partly because I don't want to watch it myself. If I have to go through it again I don't think I can bear seeing it in such details. Feel free to search YouTube yourself for those videos.

Contrary to what this Dr says, after surgery you have a lot of packing (bandages) placed in your nose. This is done in order to prevent any kind of leakage from the wound which could be very serious. Actually, the most painful part of the procedure was removing the packing a couple of days after.

So now to the pros and cons. Well without going into extreme detail like listing all the possible things that could go wrong with the surgery itself e.g. adverse reaction to anaesthetic, damage to optic nerves or carotid arteries. Here are a couple of things that are a serious threat (I compiled this list using information I found from reliable sources i.e. people who've suffered these problems post-op)

• CSF leak (CerebroSpinal Fluid is the liquid that surrounds the brain and spinal cord) - I think it's pretty obvious why it would be a bad thing to be leaking brain fluid...
• Developing Diabetes Insipidus - This is not the same as the commonly known diabetes. This one causes excessive thirst and urination
• Developing a serious infection at the wound site i.e. in the sinus
• Damaging the pituitary gland - this can lead to many complications including messing up other hormones which are also critical to functioning

On the other hand, transphenoidal surgery has some advantages over other treatment options:

• Minimally invasive
• "Been there, done that" i.e. I know what to expect as I've been through it before
• Good chance of remission
• Less likely to have to be on medication for life

What do you think? Would you want to go through this? AGAIN!

Here's what I looked like after the first one

Day 15: Is it too soon?

Is it too soon?


Earlier this week I was staying with some relatives and a distant cousin of mine who is 5 years old asked me: "Do you eat chocolate every day?". When I replied no, I was glad that she moved on to something else. But I wasn't so lucky after that. A few hours later, she started stroking my arm and laughing about how fat it is. "You have a fit thigh" she said, confusingly using the word thigh to mean upper arm. I was not offended by her comment as she was right but I simply replied: "Yes you're right, but this is my arm not my thigh". She then proceeded to ask me why my arm was so fat. I didn't know what to say!! I replied the usual response that any panicked person being questioned by a 5 year old gives: "Just because". What I failed to anticipate was that this time she wasn't going to let me off easy. "But WHY?", Why, why, why, why, why???? (Any one with kids or who's had to deal with kids will know how persistent they can be when you do not give them a satisfying answer). As I was debating in my mind whether to tell her it was because I was sick, I decided to distract her with a question of my own "Why is your hair black?". I'm not going to give you all the details about how she quite intelligently pointed out that it was because everyone in her family had black hair but basically, I got outsmarted by a 5 year old!!!

But the reason I'm sharing this story with you is because it really got me thinking, when should we start telling people/kids about things like disease and how they can affect you? How can we expect children to grow up without prejudice or misconceptions about overweight people if we do not provide them with an alternative explanation. It is normal that a 5 year old will assume that someone overweight eats chocolate every day because that's what is being portrayed around them. When I learned about the body in biology I don't remember being told that hormones affect weight. All I remember is being told that only a healthy diet and exercise will keep you slim and fit, and that eating badly will make you fat. So if even I didn't find out until I was 25, how can I expect this 5 year old to understand?

I remember I watched a program on TV a while back about people living with disfigurements. One of the guys on the show talked about how kids would often stare at him and either ask him (if they were brave enough) or their parents, why he looked like that. The man very rightly said that he understood their curiosity and in fact liked the opportunity to provide them with an explanation as this helped educate them. Part of me really wanted to tell my cousin that I was fat because I was sick and my disease affected my body but I think I was just too scared about what else she would ask. I was unsure about whether I could explain it to her properly and if it was really appropriate. I guess I was afraid of getting too serious with her considering how young she is. But with hindsight I regret not taking the opportunity. I think that she could have handled it and worse case scenario, she would have just changed the topic or stared at me blankly. Either way, I don't think it would have done any harm but it could have helped. We shouldn't be afraid of sensitising young people to the realities of life. It's not about scaring them it's about making them open, well rounded individuals. It's never too early to start education and awareness.