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.

Saturday, 10 March 2012

2012 Adelaide All Japan Day #1

On the 26th of February the 2012 All Japan Day car show was held at Wigley Reserve, Glenelg. There was a great turnout, with row after row of cool Japanese cars of all ages, shapes and sizes filling up the oval.

I parked next to this tidy white M35 Nissan Stagea.

You can see AJD organiser Kristian Appelt of Iron Chef Imports in front of my Ceffy here.

On the other side was this slammed Toyota Celsior.

A few spaces further down was this very clean and tastefully modified Cefiro, the dished meshies really work well on it.

There were several immaculate Datsun 1600s/510s on display.

Quite a few cars came in on trailers, and also a couple of tilt trays, including this awesome Toyota JZX100 Chaser, which needed a couple of pieces of wood to drive onto the grass without ripping the front bar off.

Next to it was Kelly Wong's distinctive pink and black Cefiro drifter.

At first I was wondering if this Nissan 180SX had some sort of sticker-bomb wrap on the exterior panels, but on closer inspection and talking to the owner, I learned that they're all individual stickers. That's dedication for you, although this sticker-bomb method was probably a lot cheaper than nice paint.

Nissan Cedrics of any vintage are quite a rare sight, and this late model Y34 example in black looked really nice.

There was a slight difference in ride height for these two Nissans; a very early model Patrol 4WD parked next to a lawnmower spec S14.5 200SX.

The owner of this Toyota Cressida wagon shied away from using the original engine, giving it a 1JZ-GTE heart transplant.

There were only a couple of C33 Nissan Laurels in attendance, including Daniel's black one.

I don't know how this tough looking Toyota JZX100 Chaser Mark II drives anywhere without getting beached.

A few different siblings lined up; R34, R33 and R32 Nissan Skylines respectively.

Stageas are pretty popular now, the black/white combo on this wagon worked well.

Nissan R34 Skyline GT-R in Bayside Blue...one of my dream cars.

There were loads of JZX100s at the show, with various body styling and rim choices.

Plenty more cool cars to come in Post #2....

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.