Showing posts with label Chronic Illness. Show all posts
Showing posts with label Chronic Illness. Show all posts

Sunday, 9 February 2014

My baptism testimony.

On what was probably the coldest day so far this year, I gave my testimony and was baptised at Grange beach earlier today. Many thanks to everyone who came, and all my family and friends who have supported and prayed for me over the years.

If you missed it, here is the transcript of my speech, complete with excessive punctuation and incorrect grammar, used in an effort to slow down my talking, and make it flow better for reading aloud.


Hi everyone, my name is Rohan, and today I would like to share with you some of what God has done in my life, and why I’ve chosen to be baptised. Along with several of our awesome youth kids; Jacinta, Tim & Kirstie, we have made the decision of taking a public step of commitment and faith in God by being baptised today; although they’re doing it a tad earlier than I am.

I’ve been coming to Grange since before I was born, brought up in strong, loving Christian family home with my parents, and two brothers. While I’d thought of myself as being a Christian since I was 6 or 7 years old, I didn’t fully understand who God was, or what being a Christian really meant.

This changed to a more serious faith at a Franklin Graham outreach event I attended when I was 13 years old. There wasn’t anything earth-shattering being said compared to what I’d heard for years at church, but God really spoke to me at that point, and I felt a strong push to go up the front, and declare my faith in Jesus as my saviour.

After struggling a with bullying and social exclusion in primary school, knowing that Jesus would always love and accept me, even if most people didn’t, was a great reassurance.  Now, I’d like to be able to say that my life since then has been amazing, happy and easy. However, after a couple of years of a regular life as a teenage boy, eating ten Weet-bix for breakfast, without much to challenge my faith in God’s goodness, I stumbled onto a rocky, difficult path of chronic illness, that has tested my faith to the breaking point time and time again, over the course of many years.

As some of you may be aware, I’ve struggled with some very debilitating and serious health problems for a long time. It all started in January 2000, with a chronic food poisoning infection in my digestive system which has prevented me from living a full life, being able study and work like everyone else my age. To give a very brief outline, this infection has caused the muscles in my stomach to become paralysed, and completely unable to digest any food or water.

 So as of today, I’ve been unable to eat even a mouthful of food or drink for the past 1,221 days, or 3 years and 4 months if you don’t have a calculator on you. Instead, I receive liquid nutrition for 13 hours a day, pumped by a machine through a feeding tube, which was surgically inserted into my intestinal tract, just below the stomach in November 2010, and is essentially what keeps me alive.

 At times, these symptoms have been so severe as to render me hospitalised, then bedridden, and completely unable to function for nearly a year at a time; namely during 2002, 2006 and 2010. Overall, there hasn’t been a single day since I was 15 years old where I’ve felt well and healthy, which has caused enormous struggles with my faith, healing, the effectiveness of prayer, and the concept of God’s kindness and mercy.

 How can suffering through so many years of debilitating illness be his great plan for my life? What kind of God just sits back and watches people suffering, when he could so easily heal them? It’s hard singing praise songs in church, when you’re feeling too sick to stand up and take part, and difficult to align God’s goodness, with being simply too ill to even go to church in the first place, month after month.

Perhaps one of the reasons I haven’t chosen to be baptized until now, is that while I’ve been a Christian for a long time, for much of the past 14 years, when I have prayed, cried out and begged God to heal my body, my prayers seemed to go unanswered, with no response, or even a feeling of God’s presence; just the torturous physical suffering, while feeling terribly alone and abandoned. 

And while baptism is a declaration of commitment, not warm fuzzy feelings, I feel that 5 years ago, I would have had to come up with a testimony that would be forced, and just something that I thought was what a testimony “should” sound like. But as I’ll explain, I think that now is the right time for me.

So clearly, I’ve had a very tough journey for the second half of my life. However, in the midst of all that suffering, there have been numerous examples of God stepping in as an answer to prayer, showing his love and care, and reassuring me that I’m not battling through this alone.

On March 16th, 2012, I was diagnosed with testicular cancer; six weeks before I married my lovely wife Sally, and the day between her birthday and bridal shower; incredibly poor timing at best. Later that afternoon, we were also told that the house Sally had been renting, which we planned to move into following the wedding, had to be vacated a few weeks afterward. Obviously, the cancer diagnosis was some shocking news, and for a couple of days afterward, I was freaked out, tense, shaky and upset about what was going to happen to me. But after visiting a friend’s house with Sally, at first discussing, and then praying about the cancer and upcoming surgery with them and Sally, the feelings of terror and dread melted away.

This might sound a bit weird, but despite having already gone through so much with my stomach problems- only to have this dumped on top of it- the times surrounding my cancer diagnosis, surgery and recovery were accompanied by the strongest sense of God’s presence and comfort I’d ever felt in my life. This feeling was amazing, as well as surprising, considering how much I felt God had abandoned me in my times of need with my stomach problems, and that it would still be a while before we knew whether the cancer had spread, or if I would need further treatment.

For the first time, I finally experienced the emotions and calmness described in Philippians Chapter 4, Verse 7; “And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Now, it’s not like my heart rate wasn’t a little elevated while lying in the hospital bed, waiting to go into surgery, particularly considering they were hacking through a fairly sensitive area to remove the tumour. But by praying, denouncing Satan and any power he tried to hold over me, and running praise songs through my head, I was at peace with what was about to happen to me, feeling safe in the knowledge that God had his hand over me, and that everything would be ok.

Not only was the strong sense of ‘peace beyond all understanding’ present, but God’s practical and material blessings were also abundant during this time. While trying to sort out living arrangements, it came up in conversation with my parents that a house owned by extended family had been empty for several years, and made the suggestion that couldn’t we live there for a year or so, until the property was sold?

In a humbling display of generosity from family, friends and strangers, hordes of people descended on the messy and overgrown house and jungle-like yards, putting in lots of hard work to transform it into a suitable home, where we could live rent-free for some time. This was an amazing blessing, with my health too poor to work much at all, allowing Sally to study full-time at TAFE and Bible College, as well as work 25 hours a week.

And just in case we hadn’t noticed this blatant display of God’s provision, he made sure of it with the house literally being a 30 second walk away from Sally’s work across the road. In addition, an internet car enthusiast community, which I’ve been a part of for many years, banded together after hearing about my health problems. A group of people, many of whom I've never met in person, threw $6000 in a hat as a wedding gift for us , and helped to clean up the house inside and out; the abundance of God’s blessings was even clearer. The only thing missing was God plonking a flashing neon sign on the front lawn, quoting the first part of Isaiah 41:10; ‘Fear not, for I am with you’.

On our wedding day in April 2012, we had to contend with a fairly significant number of problems compared to most newlyweds our age.  Such as me having a feeding tube plugged into the left side of my intestinal tract. A bag of antibiotics, liquid feed bottles, and enough medications to tranquilize a small herd of elephants. Recent surgery to remove a cancerous tumour, with a gaping wound that needed frequent dressing changes, and uncertainty about our ability to have kids following that. Unable to eat or drink, lugging around a feed machine instead.  Very little income besides a disability pension and occasional photography work. 

But God had blessed me with an incredibly generous, loving and understanding wife in Sally who was OK with all that! Well, apart from the wound dressing changes anyway, which I did myself. Apparently, it’s not considered ‘romantic’ to spend half an hour with a dressing kit, cleaning out a gory wound on your husband’s torso, while lying on your bed in the honeymoon suite.

Life has still continued to be very difficult since then, with almost permanent nausea and fatigue at various levels, and some days where the stress, frustration and anger at my dysfunctional body boils over, and I break down in tears. But again, when I settle down and think about it, God has quietly provided moments of mercy when needed in recent times, of which I’d like to give just one example.

While spending 2 months in hospital at the end of 2010, a skeletal 50kg and clinging on to life, the idea of going on an overseas holiday, or even a plane to another city, was far beyond something I would have comprehended as being possible, being barely able to muster the energy to sit up in bed. But, a couple of years later, not only was I able to spend three amazing weeks touring New Zealand, but was at the point where I even went skydiving and bungy jumping!

Another more recent example of God’s timely intervention was during a weekend trip on Peter and Vikki Hart’s houseboat a couple of months ago, with our small group. After mistakenly trying to get to Blanchetown via Murray Bridge, which while being a lovely drive, is NOT the fastest way to get there, I had already been feeling pretty awful the few days previous, with severe nausea and fatigue putting a dampener on things, that I would otherwise enjoy doing.

The first half an hour was rather unpleasant; my already high nausea levels exacerbated by the gentle rocking motion of the boat, as we putted down the river. While everyone else was sitting around on the front deck, chatting and laughing while tucking into a plate of cheese and crackers, I was pacing inside the kitchen area, trying to breathe slowly and settle the nausea, without much success; calculating and dreading the remaining hours of the weekend that I would have to spend feeling like this.

 Noticing my distress, Sally brought Vikki over to pray for me. In a frustrated and angry mood, I was not expecting anything to happen, like so many other times when people have prayed for healing for me. But over the next few minutes, after the heartfelt request to God for healing, the nausea gradually dissipated until it was at a low enough level where I could actually enjoy the weekend, rather than being forced to endure it. Not only that, but I was able to jump on a jet-ski, and went knee-boarding behind a speedboat, albeit in a somewhat uncoordinated fashion for the most part.

So while my body is still stricken with illness, preventing me from living a ‘normal’ life, which can at times be frustrating, scary, upsetting and depressing, God has still blessed me many times in the midst of all my times of trouble. These blessings are not full physical healings, and certainly not a complete return to good health. But, these ‘small mercies’ have allowed me to experience hope, joy, love, peace, and fulfilment in what can be very trying circumstances; keeping my hope, and faith in God, and helping me to appreciate what I do have. So whatever the future may hold, with this public declaration of faith and commitment, I trust that God will guide my amazing wife Sally and I in making the most of our lives, working for his glory.

You will more than likely have experienced some incredibly difficult circumstances in your own lives, be it through illness, family difficulties, death, or loss. But I would like to leave you with this thought. If you sit down and really think about it- and maybe even write out a list of them- what are some of the many blessings God has shown you in your life, or in the lives of others? Does it change the way you feel about His mercy and grace?

It doesn’t mean your life will be easy; or that God will fix all your problems for good. Two weeks ago, I had to leave the church service after about 20 minutes, because simply standing, then even just sitting up, was more than I could physically tolerate. I almost fainted while trying to drive home, swapping seats with Sally halfway there, before spending several hours curled up in the foetal position on our couch. Writing this testimony made me feel so sick; I couldn’t even look at my first draft for a week.

 But, God is always there, carrying you through your troubles, even if it doesn’t feel like it at times. And if you haven’t made a commitment to follow Jesus, I hope that my story has helped give you some understanding of what he is capable of doing in your life, no matter how trying the circumstances, if you will just open your hearts and minds to him. And, for those of you still awake at this point, thanks for listening, and I’ll see you down at the beach!










Wednesday, 27 November 2013

Around the web today; November 27th, 2013.

Some very cool pics of the 2014 Chevrolet Corvette Z51 coupe at sunrise:

http://www.rides-mag.com/web-exclusives/2013/11/2014-corvette-stingray-z51-sunrise/




Amusing photos of a dog who can balance pretty much anything on his head:

http://distractify.com/fun/humor/scout-is-the-single-most-composed-dog-on-the-planet/




Some etiquette tips for family and friends of a child who has a feeding tube:

 http://www.feedingtubeawareness.org/for-friends-family.html




Some cool footage of a variety of Nissans and Toyotas drifting up and down winding mountain roads in Japan. Seeing the big four door sedans like the Toyota Crown smoking their tyres while gracefully arcing through a bend is pretty impressive:

http://vimeo.com/79388916



Jean-Claude Van Damme teams up with Volvo Trucks to create a very memorable tv commercial:

http://distractify.com/people/amazing/the-epic-split-featuring-van-damme/



Parenting; doing it right: http://distractify.com/fun/amazing-dinosaur-parents/



The guy standing next to this Subaru WRX during a rally was lucky to escape death here:

http://www.carthrottle.com/this-mitsubishis-kamikaze-mission-proves-that-an-evo-and-impreza-can-never-be-friends/







Thursday, 21 November 2013

Around the web today; November 21st, 2013.

A very expensive corner:
http://www.youtube.com/watch?v=by7wraE8eug



The painfully cliched trailer for the upcoming 'Need for Speed' feature film. Should be plenty of cool car action though:
http://www.carthrottle.com/the-outrageous-need-for-speed-movie-trailer-has-landed/



The new Jaguar F-Type Coupe R both looks and sounds absolutely phenomenal. Turn up your speakers and enjoy:
http://jalopnik.com/mother-of-god-the-jaguar-f-type-coupe-r-sounds-psychoti-1468021418



Gastroparesis sufferer Megan Kondilas has started a blog about her experiences with her complicated health problems and illness during pregnancy:
http://gppregnancyandme.blogspot.com.au



An awesome short film featuring an 850hp Trophy Truck and Nissan GTR having some fun in the Mojave Desert:
http://www.youtube.com/watch?v=Mmh-ew1swD4



Another Trophy Truck executes a full barrel-roll and near perfect landing:
http://www.youtube.com/watch?v=jsrgeoa_70M#t=121



If you have a fear of flying in planes you probably shouldn't watch this:
http://www.liveleak.com/view?i=70c_1384839266



Liberty Walk's outrageously modified version of the Ferrari 458. It certainly polarizes opinions; while it may not drive all that well with the ride height and size of the rims, it certainly looks very tough indeed:
http://www.speedhunters.com/2013/11/not-afraid-to-shock-liberty-walk-458/



They're not afraid to take an angle grinder to Lamborghinis either:

http://www.speedhunters.com/2012/11/jdm-widebody-lambo/

http://www.speedhunters.com/2013/02/lb-performance-aventador/



Monday, 2 April 2012

Battle scars.

My torso is looking rather mutilated after the surgery.



Lots of fluid started seeping out for the first time last night, which was a little unsettling. The wound was ok overnight with some gauze dressing just in case, but mid-morning after replacing the tape and gauze with tissues, they looked like this after 5-10 mins,









Tuesday, 20 March 2012

So six weeks before I get married, a doctor tells me I have cancer...

* I wrote the bulk of this post yesterday afternoon, Monday 19/3/12. As it stands now, I'll be going in to the Queen Elizabeth Hospital tomorrow morning at 7am, for surgery to remove a tumor which is 98% likely to be a malignant cancerous growth.

Just when I thought things were relatively stable with my health, despite today being Day #528 since I've been able to eat, this bombshell was dropped on me last week.

I'd noticed my right testicle was a bit swollen and hard over the past couple of weeks, so went to see a GP about it last Wednesday. After poking around he said he was quite concerned about it, and ordered an ultrasound the next day, which just happened to be my amazing fiance Sally's 23rd birthday.

The radiologist looked quite concerned during the scan, mentioning that with the last few younger guys with similar symptoms she'd had come in, the lump turned out to be something nasty. From the expression on her face I could tell what she was thinking...I've noticed even doctors seem very hesitant to use the 'C' word.

Went straight back up to the GP after the ultrasound with results and report, where he used terms like 'prepare for the worst', 'cancer' and 'sorry', before calling a urologist to organise a specialist appointment ASAP. All this was not part of the birthday surprise I'd planned.

So on Friday afternoon I went in to the Queen Elizabeth Hospital with my dad and Sally to see a couple of urologists.




After a look at the ultrasound images, the report and a brief physical examination, they sat me down and said there's a 98% chance that the lump is a malignant tumour...testicular cancer, to be precise.

For a little bit of context, Sally lost her mum to brain and lung cancer when she was only 15 years old, so hearing doctors telling her that I now have cancer was obviously enormously distressing. I'm not sure all this has sunk in for me yet...it's a lot to take in. I've been waking up hoping the events of the past few days were just a bad dream...it's a bit surreal.

Either way, they said it needs to be surgically removed as soon as possible, biopsied to see what they're dealing with, and then work out if I need any more treatments like chemotherapy or radiotherapy. Hopefully I've caught it early enough that it hasn't spread anywhere else, and surgery is all I need. Since I'm already too sick to eat and drink, anything more than surgery would probably finish me off, so hoping and praying the operation gets it all in one hit.

After briefing me on what would happen moving towards surgery, they sent me down to the IMVS to get some blood taken to test for cancer/tumour markers.



   I was impressed with the blood collection guy, as he actually tapped one of my veins successfully on his first attempt, something few people have been able to achieve over the years.



 Besides the unfortunate timing of the diagnosis in relation to our wedding, as mentioned above, Thursday was Sally's 23rd birthday, and she had her bridal shower on Saturday...so this news fell neatly in between those two events. And in another unhelpful twist, that night we discovered that the house that we had been planning to live in, which one of my friends had been renting for nearly 5 years, is going to be put on the market as the owner wants to sell. It was pretty much perfect for us with the size, location and cost...but now it needs to be vacated by June 1st. The wedding is April 28th.

I've been getting a disability pension for a couple of years now, but this will get cut in at least half once I get married, despite living costs going from minimal to a lot. With the ability to be well enough to work constantly up in the air, I'm getting pretty concerned about the financial side of things. So that's quite a few curve balls to be thrown in such a short time, things were already going to be tough with my gastroparesis and related issues, and getting this news weeks out from my wedding seems a bit rough. Here's a recent post I wrote about the events leading up to my surgery to install a jejunostomy feeding tube in November 2010: http://carscameraschronicillness.blogspot.com.au/2012/03/my-jejunostomy-tube-swap-1-back-story.html

On the upside, I hear it's one of the most treatable cancers, and it's relatively common for surgery to be the only treatment needed for testicular cancer, so I have much better odds of coming through this ok, as opposed to something like bowel cancer. I got a call from one of the specialists about an hour ago telling me to come in at 1:50 this afternoon for a pre-op appointment with doctors, surgeons, anesthetist, pharmacist etc.

The surgery will be Wednesday morning, where they will make an incision near my hip and pull the tumour up and out through there...which for whatever reason strikes me as preferable compared to slicing me open from the bottom. I will stay in hospital at least overnight, and if the pain has settled down enough I can go home Thursday, and wait for results on the biopsy, blood and urine tests.

*Back to present tense*

I'll be having a CAT scan after the surgery tomorrow to determine if the cancer has spread, and if so, how far and where it has gone. The tumour itself will be sent to a lab and subjected to a range of tests, to work out what type of cancer it is, how aggressive the growth is, and if I need any further treatment in the way of radiotherapy or chemotherapy.

But the results from the biopsy will take another week or two, as if the few weeks leading up to the wedding weren't stressful enough. I'm mostly concerned that some of the nasty cells have made their way elsewhere, that idea scares me a lot more than going under the knife to cut a lump out.

I would strongly recommend you steer clear of a google image search for this topic, however the Australian Cancer Council website has some good information about symptoms, diagnosis, treatment and recovery: http://www.cancer.org.au/aboutcancer/cancertypes/testicularcancer.htm

If you're a little braver, the wikipedia page has a couple of pictures along with loads of detailed information about the disease: http://en.wikipedia.org/wiki/Testicular_cancer

So after spending several hours in a waiting room at the QEH yesterday going through the pre-admission process, which involved seeing a nurse, the anesthetist, my urology specialist doctor and a pharmacist, I'm all ready to go under the knife tomorrow. I have faith that whatever happens, God will help give me the courage and strength to get over this hurdle, along with support from lots of family and friends. Your kind words, encouragement and prayers are very much appreciated.

And for the guys reading this, if any of the symptoms I've described ever come up, get to a doctor as soon as possible; because the faster you can get a diagnosis and treatment, the better your chances of beating this nasty disease.

I think my experience so far in this specific instance shows how well the Australian public health system can work sometimes; considering that I went to see a GP on Wednesday about the lump, had an ultrasound with results Thursday, urology specialist appointment on Friday, pre-op admission on Monday, with surgery on Wednesday morning. Can't get much faster than that.

Thursday, 8 March 2012

My jejunostomy tube swap #1: The back story

After having a fairly lengthy tube attached to the inside of my jejunum since November 2010, I finally had the feeding tube changed over to a very small and low profile 'button' version on February 21st.

*Just as a warning, there will be some mildly graphic medical photos of the tubes and stoma in this post.*

Here's what it looked like just after the initial surgery to install the tube in November 2010. It hurt way more than it looks here for something small...pretty much any movement at all was excruciating for the first couple of weeks, even on heavy doses of Panamax 3 times a day.



This post recalls some of the events leading up to the lengthy hospital stay in September/October/November 2010: http://carscameraschronicillness.blogspot.com.au/2011/06/my-story-hospital-2010-1.html

You may notice I wrote that quite a while ago now. I want to tell the rest of the story, but recalling such horrific memories about what happened and focusing on them is quite distressing. 

I started writing this blog post on the 23rd of February while the tube swap experience was still fresh, but due to the writing process unearthing more nasty memories, it's taken me a little while to get back to finishing off this part.

However, I will cover some more ground as I split this up into several different posts.

This post about my car has some photos and descriptions of what was happening around that time as well as my very slow road to recovery:

But anyway, back to the tube stuff. It had been suggested for the past few months, by my doctor, parents, fiance Sally and friends Daniel & Emily that I should get a low-profile version of the roughly 20cm long feeding tube that had been hanging from my abdomen since the surgery.

Despite keeping me nourished and alive, having a tube dangling around was pretty inconvenient for a lot of things. Because it would easily catch and tug on the stoma site, for the vast majority of the time I had it safety-pinned to my boxers. While stopping it from going all over the place, it also meant that the open wound of the tube site was being constantly rubbed and stretched, as I moved around doing normal daily activities like walking, driving and sitting down. This led it it getting very red, sore and irritated at times, as well as a couple of infections early on. It was also liable to get caught or hooked on something fairly easily.

At first, in December 2010, I was pinning it to the front of the lower end of my t-shirt. Sally suggested it wasn't the best spot, but I apparently needed to find that out the hard way myself. Going into the bathroom one afternoon, the loop of feeding tube caught the door handle as I tried to walk past. I wasn't moving very fast, but when you hook and yank a tube even gently on such a sensitive area, a mild tug can be pretty nasty.

I got pretty freaked out that I'd torn the tube out of my body for about a second, immediately stopping and removing the tube from around the doorknob. The stoma started bleeding a little bit, and feeling extremely weak and sick at this time anyway, I started to feel weak and shaky, and lay down on the bathroom floor, hoping it would be ok. In hindsight it wasn't a big deal, but it could've been pretty nasty if the tube had come out.

As I would discover when having the tube swap a few weeks ago, I really didn't need to have been worried about the tube coming out like that.

Despite knowing how much more convenient a small feeding tube attachment would be, the process of what had to happen put me off doing it for quite a while. To the extent that when I saw my gastroenterologist Dr. Rayner and he talked about changing the long tube over to a button version, I said that after what happened last time, I'd really rather not go through it again.

While my entire hospital stay in late 2010 was awful, there were a couple of procedures related to the feeding tubes which still haunt me in my dreams, and rate up there with some of the nastiest medical procedures I've been through...and I've had a lot.

 Fairly early on in my stay, I was able to eat only very marginal amounts of food...barely enough to keep me alive in the long run. With no end to that situation in sight, it was decided within a week that I would need have a naso-gastric feeding tube inserted to give me some nutrition. At this point my weight had plummeted from 64.5kg in early 2010, to just over 50kg in October 2010. With my stomach muscles paralysed and completely unable to process and digest food, I was literally beginning to starve to death.

Here's a comparison of how drastically bad things had gotten in a relatively short space of time; the first photo was taken in January 2010, at my older brother Drew's wedding.



And this was taken at the Royal Adelaide Hospital on October 6th, 2010.



In an unfortunate turn of events and timing, Sally's dad was getting married on Flinders Island (near Tasmania) on October 1st, so she was away when I first went in, which was very tough for both of us. In an odd coincidence, the nurse who looked after me at first was called Sally too.

I couldn't eat any food the first full day as it was, and couldn't even face drinking water, but I think even a healthy person without life-threatening levels of nausea would struggle to get these 'scrambled eggs' down and keep them there. Makes me feel worse just looking at the pictures of it now. And this was despite the fact I'd specifically written down that I was allergic to eggs- which didn't stop them from bringing me eggs for breakfast the next 4 days in a row. 

The amount of mistakes the hospital made in regards to food allergies, medications and general care was actually quite scary during both my 2010 hospital visits, I was very lucky to have my fiance Sally and parents looking out for me. I would hate to think how badly things could go wrong if you weren't able to fend for yourself.
 



I am in no way being sarcastic when I say I would much rather eat the plastic, paper or cardboard instead. I think this is the epitome of bad hospital food....an almost unidentifiable yellowy-grey congealed mush sitting in a pool of tepid water.

Coming into hospital I was seriously dehydrated and malnourished, and constantly had IV saline and glucose fluids running through a drip to keep me hydrated.





Less confronting than the eggs were these high calorie pseudo fruit flavoured drinks, which were delivered 3 times a day. They're thick, sickly sweet and you can almost feel your teeth melting when drinking them. I'd had them at home the previous few months, but whenever I drank them, I just felt even worse.


With my circumstances fairly dire at this point, even something as simple as watching the Simpons in my hospital bed posed some difficult questions.


Having been tested and diagnosed with a severe yeast allergy in 2002, I hadn't actually had any more than a few pieces of bread between 2002-2010. So the image above of Homer and Bart eating sandwiches is already something that was off-limits for me. With my body not even able to orally take fluids without problems, it made me wonder if this innocuous scene of a father and son eating sandwiches together was something I would ever actually be able to do. Not the sitting on the roof part, but just eating food with your kid, which is a perfectly mundane, boring thing to do that happens hundreds of millions of times a day worldwide...unless you can't eat, and don't see a way out of being bedridden and half-starved.

The 'proposed discharge' dates on these patient information sheets are almost just a technicality for the hospital system bureaucracy, but the date shown here, September 29th, was a very long way off. As I discovered over the weeks to come, I wouldn't be leaving until November 17th.


The nights were hard. Mum and Dad would alternately stay with me during the day, but obviously had to be home as well. Hospitals are terrible to try and sleep in at the best of times, and coupled with horrendous nausea and weakness of being extremely malnourished, there was a sense of impending doom as darkness fell.


While I was lucky to have my own room for the first couple of nights on the ward, I soon had to be moved into one of the general six-bed wards in the Colo-rectal Surgical Unit. As the name suggests, most people are in there for various digestive system related illnesses and surgeries. There are patients suffering from a variety of ailments like bowel cancer, diverticulitis, Crohn's Disease, and in one young guy's case, accidental ingestion of a cleaning product that was placed in a soft drink bottle.

Just feeling as nauseated and weak as I did was bad, but with the added stress of having other sick people around, and the smells, sight and sounds of gagging, coughing, snoring and frequently vomiting, all within a few metres of my bed  made it so much worse. Any chance I had of maybe being able to eat a little bit of food was severely reduced by the situation I was placed in, and again, not exactly a place where a normal person would want to sit down for a meal, accompanied by the sights, sounds and smells of someone emptying their stomach contents close by.

That ward was where I had to be, but realistically, it was probably one of the worst wards to be in, given the symptoms and side-effects of gastrointestinal disorders and surgeries. Which sounds a bit selfish, but that didn't stop it from being an awful place to feel sick. I have a nearly phobic aversion to seeing and hearing people vomiting, and will try and avoid it at almost any cost, so trying to think of a worse place to be in with my health problems, I'm struggling to come up with any examples, short of a public toilet or sewage treatment plant.

On the upside, I was placed near a window, which overlooked the eastern side of the hospital grounds, as well as part of the Adelaide Botanic Gardens. Which was a little nicer to look at than the plain white curtains.




In another bout of unfortunate timing, my admission was only a few days before my 26th birthday. My gastroenterologist came by every morning to see how I was doing. After a few days of me unable to eat any more than a few mouthfuls of pureed chicken and steamed vegetables, it was fairly strongly suggested that I should have a naso-gastric feeding tube to actually get some level of nutrition in. The way I was going, my situation was just going to get worse if it was put off any longer.

In previous years of hospital visits, the feeding tube had always been suggested as an option. Very reluctant to have something like that done, I'd always somehow managed to force myself to eat, although that led to me feeling so horrifically and permanently nauseated, that I couldn't even justify a visit a friend's house for around 8 months in 2006. And I'm used to doing things when I feel awful.

 I really don't know how I was able to keep force feeding myself back in those days. Again, it was barely enough basic pureed turkey and steamed vegetables to keep me going, but I could hardly move out of the fetal position in bed or on the lounge in front of the TV, hoping and praying the torture would stop. Fortunately I was able to very slowly recover from that situation, at least partially, to the extent where I had some semblance of a life over 2007, 2008 and 2009.

However, having enjoyed a higher level of health the few years before late 2010, I just could not get myself back to the self-destructive frame of mind needed to keep eating under those circumstances. Which may sound a little backwards, but constantly undertaking an activity that caused me to regret that fact that I was even alive, was in no way a healthy or sane thing to be doing. For those 8 or 9 months, I literally had no break, anywhere, at any point where I was happy to be conscious, or simply not hoping to die so the torture would stop.

One of the most confronting aspects of a chronic illness like this, and something 'normal' people can't really comprehend, is that there is no guaranteed end to it, if any. While people who catch a flu or stomach bug feel awful for a little while, there's always the soft cushion of 'It'll be over soon' in the back of the mind for acute illnesses like that. 

Which is easily viewable by looking at some people's facebook status updates about a mild head cold, along the lines of "I feel like crap, I've been in bed for TWO DAYS, I'm so sick of being sick," which is ridiculous from my point of view. While having the flu can actually be nasty, I literally don't include a normal cold under the definition of 'being sick'. It's a sore throat and runny nose for a few days; nothing more than a brief, mild annoyance, which will never make so much as a blip on the radar in life events.

With me, and other people suffering from gastroparesis, it's the opposite. While I might be able to force feed myself a few meals over a day, feeling too sick to move and losing the will to live, the knowledge that the situation may never end was just too much for me to take. I simply could not justify making myself do that with no relief in sight.

On October 3rd, I ended up agreeing to have the feeding tube inserted, incredibly apprehensive about it, but as I said before, having had a day's worth or less of food in the past week, I was starting to starve to death, with my muscles being eaten away for energy in the absence of food. Since it was my birthday the next day, it was decided that the doctors would leave the procedure until the morning of the 5th.

Happy birthday cards and wishes have never felt more ironic.




Coming up in Post #2: the feeding tube insertions and subsequent surgery.

Wednesday, 29 February 2012

Behind bars and beginning to forget.

Just clicked through to this powerful photo essay by Todd Heisler on the New York Times Lens blog.

The story, which documents the lives of elderly prisoners suffering from various stages of dementia and their caretakers, shows a side of prison I'd never really thought about, in a very visually striking way.

Obviously most of the inmates have done some awful things, including murder, but thinking of these same people being a personal carer, feeding, showering and changing adult nappies for another mentally ill inmate is somewhat jarring.

http://lens.blogs.nytimes.com/2012/02/25/behind-bars-and-beginning-to-forget/

One of my grandparents has quite advanced dementia and has needed full-time care for a few years now. It's hard to know what level her understanding of the world is. On the odd occasion she has made what seems like a completely lucid comment out of the blue, but for the rest of the time she may barely even register that anyone else is in the room, let alone recognising who they are.

Visiting a nursing home full of people who have lost most or all of their mental capacity is quite confronting; I think partially because of the fear of ending up with a life where you have no control or understanding of anything that happens. Todd's 'Vanishing Mind' portfolio covers similar ground to this: http://toddheisler.com/#/Vanishing%20Mind/0/

It's hard to not feel pity for some of the poor souls in nursing homes, who may well spend their last years and days staring vacantly at a wall, with no control over their physical bodily functions, and no idea of who they are, where they are or why. But combining that pity with the revulsion for someone who has murdered another human being, or something similarly terrible, makes for a strangely conflicted feeling while viewing this series of images.

Be sure to check out more of Todd Heisler's work on his website here: www.toddheisler.com
 
He has an enormously diverse body of amazing work. His portfolios range from arresting depictions of the war in Iraq, to behind the scenes coverage of the popular American TV series Glee.

His 'Final Salute' series, showing a dead American soldier's return home and subsequent funeral, is particularly moving: http://toddheisler.com/#/FINAL%20SALUTE/0/

Todd has received well-deserved awards and accolades from numerous photography organisations and competitions, as described in the 'about' section on his site:


 "Todd Heisler has been a staff photographer for The New York Times since 2006.
While a staff photographer for the Rocky Mountain News, Heisler was awarded the 2006 Pulitzer Prize for Feature Photography for his images depicting the families of Marines killed in Iraq. The images also received top honors from the World Press Photo Contest, Pictures of the Year International , NPPA’s best of Photojournalism, The American Society of News Editors and at Visa Pour l’image. He was also part of the team which received the 2003 Pulitzer Prize for coverage of wildfires in Colorado."


Saturday, 25 February 2012

Ella's Story: Family dinner at Baba's #2


Being a pleasant summer evening, after dinner everybody headed outside. After exploring the yard a bit, Ella was very keen on taking the dog for a walk.




With some help from Auntie Anita, Ella took Lilo for a walk around the yard.





Scarlett took the opportunity to start working on her biceps.



The backyard wasn't quite big enough for a decent dog walk, so they all trotted off down the street together.



After walking to the end of the street, Ella and Anita made their way back into the yard.




Fresh from her workout, Scarlett rushed over to show off her guns.


Lilo was pretty excited about it, struggling to get inside.


Emily offered Ella a high-five for walking the dog so well...


...while Daniel had his head stuck under the bonnet of one of the cars, with Lilo safely tied up again on the lawn.



Thursday, 23 February 2012

Ella's Story: Family dinner at Baba's #1

Last night the Jakas family got together for a nice family dinner at Baba's (grandma's) house.

Having just completed a marriage counselling session with Sally, she quickly rushed over to her hip-hop/breakdance class, run by a couple of our good friends, Angie and Jege. You can have a look at their website here, which includes some photos I've taken for them: http://www.breakandenterdance.webs.com/
 
After hearing about Ella's disheartening test results a couple of days beforehand, I wanted to see her and everybody else, so headed over to Daniel's mum's house.

I arrived a bit late for the food part, not that it's relevant to me anyway, but came in while the older people (over 5) were sitting at the dinner table. I'd had my jejunostomy tube switched over on Tuesday which was rather brutal, mainly consisting of a doctor trying hard to pull the old tube out, before snipping the bottom part off and putting the new small port in. I'm in the middle of writing another blog post about that, so keep an eye out for that in the near future.

But anyway, after showing them the changed tube site, I walked into the main room where Ella and Scarlett were watching The Wiggles on TV. Ella was sitting back on a mini lounge chair, while Scarlett was half-buried in a large beanbag.


Going up to say hello, Scarlett waved her arms and legs around like a turtle stuck on its back in the beanbag, while Ella quickly looked at me and said hello. Still watching the TV, a few seconds later she called out 'Sally...?!, expecting her to be with me. She asked 'Where's Sally?' and I said she was having some fun at her dance class.

I said hello to Scarlett as well, and helped her struggle out of the big dip she'd made in the beanbag. Ella went up closer to the TV, while Scarlett wandered and jumped around a bit.


I'm not sure what was happening here, but it looks like something on the floor was funny.


She then jumped back onto the beanbag.


Bored with the current DVD, Baba and Zoe helped Ella pick out a new Fairies DVD to watch; who are generally at least more bearable than the Wiggles. Or maybe I just haven't heard them repeated quite as frequently.


With the new show playing, Ella settled back down on her little lounge, fixed on the screen.


Obviously that was way too boring a viewing choice for Scarlett, and she decided to see what the fairies looked like upside down.


She scampered off again shortly afterwards, leaving Ella enthralled with the dancing routines taking place on the beaches of Second Valley. (A guess that was confirmed by the end credits; having been there in person several times, the coastline and rock formations looked very familiar)




Scarlett and Zoe came back in with a weird looking knobbly ball, and mucked around with that for a bit, before Scarlett ran back out of the room again.



She had a bit of a cuddle with Baba, before struggling to escape so she could get a drink of water from her backpack near the kitchen bench.


The family dog Lilo (The name has a couple of Ls in it, but that's probably not right) was pretty keen on playing with Scarlett. 

Holding the bottle out towards her briefly, Scarlett then gulped some water down while Lilo pawed at the window.



A short time later some desserts were on the table, including rice pudding, chocolate and a nice bottle of red wine.


After clambering onto a couple of different chairs, Scarlett sat down between Daniel and Emily and shoveled spoonfuls of rice pudding into her mouth as we all chatted.





Scarlett takes after her mum in quite a few ways, one of which is a love for chocolate.



After a few pieces, playing in the backyard started to look like fun....


Coming up in Post #2: Playing outside.