F*ck

While I was kind of dreading my last cycle this week, I was also looking forward to the end of it but it's not to be. Apparently my blood count is too low and the treatment needs to be deferred by one week. That means I'm going to feel like shit during our getaway weekend that we had planned as a celebration to the treatment's end. The nurse told me I had to ring the front desk and make an appt for next week, well I rang the front desk but the person couldn't give me an appt today because they are apparently short of staff next week and it needs to be approved by the head honcho first etc...so I need to ring up tomorrow in the morning....I'm not sure where I will be because well I'd planned with the HR dpt at my work to take the whole week off and I went to the doc today and got myself a medical certificate for the week, and knowing my work they'll probably refuse for me to return to work without having a certificate to say that I can, meaning I'm going to have to take another whole day off just so that I can get this certificate and I'm at the stage where I hardly have any sick leave left and can't really afford to be off for administrative purposes....apart from that my eyes are burning again...so yeah it's just f*cking great....
It really pisses me off, I had psyched myself for this week and now I've got to stress over reorganising everything.

A new shade of grey

I was hoping to have some exciting news to tell but it's feels more and more like 'Groundhog day'

In brief the tumours appear stable..( meaning either the chemo has put a stop to the disease's progression or the tumours were stable long before the chemo was administered or the same results could have been achieved by simply giving me a sugar pill...)

The good news are that some of the small tumours previously caught by the CT Scan have now disappeared, the bad news are that they are a number of small tumours previously undetected that are now being picked up by the CT Scan.

Someone in the oncology department had the not so genius idea that perhaps I ought to have surgery now....someone in the surgery unit said that it was out of the question due to the fact that I have too many tumours spread out and that it would be a major surgery with perhaps no major benefits at this stage.

Anyway I'm still roughly at square one...same same ....I'll just be happy when I finish my 6th Cycle ( I'm on my 5th) , to be in charge of my own body, to start getting fit again, not to have to go to hospital every Saturday for my PICC dressing, to gain a little bit of freedom.

When I look at photos of now and then, It makes me feel like I've aged a lot in a very short time. I'm the 'uncle fester' of chemotherapy.


Posing with Meeka my sister in law's dog....I'm on the right, the one without the hair in case you were wondering....

Psycho cravings

Late last week, Vee found me in the kitchen juicing a ruby red grapefruit and asked what I was doing. I explained that I was thirsty and felt like something citrusy...nothing wrong with that you might add but for the fact that it was 2 in the morning and I was standing in my PJ's. I actually had had this dream about this beautiful cocktail I was sharing with Vee when I woke up and felt this urge to drink something as close to it as I could.

For the first few days after chemo, I get the weirdest psycho food cravings ever. No one knows what kind of food or drink I want next, not even myself. One minute I feel like one thing and the next just the thought of the exact same thing makes me want to puke.

These psychotic episodes are a side effect of Dexamethasone, a type of steroid I have to take during and three days post chemo. Aside from the food cravings it also makes you hyper meaning I find it difficult to get a good night's sleep while I'm on these. They've given me some sleeping tablets to counter this effect but the one I took last night didn't seem to work all that well.

Anyhow I crave anything fruity, but I can't drink too many processed fruit juices with the added sugar because of my diabetes.....Dexamethasone also sends your blood sugar levels sky rocketing to levels way past the safe margins....but there's nothing to combat this side effect.

I just finished drinking three glasses of Apple, Mango & Banana juice as a treat and I'm already looking forward to drinking a hot chocolate with condensed milk later on this afternoon or am I ?...Oh and I just had a kebab with chilli sauce for lunch...Psycho cravings !!

Photophobia

It's been tough. Cycle 3 and my return to work didn't really work out as easy as planned. As my blood platelets went down mid week post chemo, my eyes started to burn constently, I started suffering from photophobia so couldn't stay in front of any computer for very long. After two attempts at returning to work I couldn't take it any longer so I was forced to spend whatever time was left before the start of my next cycle at home. I've just finished cycle 4 and I'm really over all those side effects, I'm sick of having to ingest so many tablets at different times, the constant feeling of nausea or feeling totally out of it thanks to some potent drug. I also wonder what if anything are the effects of this treatment is having on my cancer, there is after all nothing proven....and one has to wonder if instead of chemo I might as well been sucking on a lollypop with the same results without the side effects.
Most of the time you live like nothing has changed but every now and again you have to pinch yourself to remind yourself that you have cancer and live on borrowed time. it just gets frustrating, for the moment I'm living for the sake of living, I wish I had a life estimate so that at least I could plan for the future....right now though I'm feeling nauseated...same old same old...

The return

A week has passed since my last post. I went back to work on Monday, it was interesting to see the varied reactions from my colleagues. While they all came up and welcomed me back politely, I feel that cancer is still a taboo subject for most. I also think that unless you have been through it yourself or know someone who has, it's perhaps difficult to know what is involved and how it can change one's life entirely.
I was absolutely exhausted by the first day and it got worse as the week progressed. It was physically tough, my body had forgotten to do simple exercise such as walking and my muscle ached after a few days. I managed to stay there until Thursday when my eyes started burning again to the point where I decided to go home.
I've lost the bottom part of my eye lashes and the top is thinning out, eye lashes help keep the dust and any kind of air pollutant out of your eyes and believe me it's quite noticeable, my eyes get irritated very easily.
I thought of wearing a patch but I can't wear a patch on both eyes !

On another subject I went to have my PICC line cleaned out today, so I thought I'd get a pic so that you can see how weird it looks...if you have a weak stomach don't look. And for those who wonder, it's not painful, in fact I forget it's even there for most of the time. Keep in mind that it is normally covered and stuck on the inside of my arm, it was just being cleaned up when this pic was taken.

Doesn't that just make you want to be able to plug your ipod or any other electric device in there, who knows maybe in the future they'll be able to insert a small battery pack under your skin and we might all be able to do just that....recharge your mobile phone, plug in your ipod, portable reading lamp etc....think of the endless possibilities ....

Plugged in

Well there goes cycle 3..... I think it's been somewhat easier than the last two cycles, probably because I know what to expect and can anticipate.
My veins having been damaged by the chemo drugs meant that after two failed attempts to find a decent one for the cannula, I agreed to have a PICC line inserted inside my arm. It was inserted under a local anesthesia and I was happily surprised that not only was this not painful but it only took about 20 minutes or so.
Yeah it's kind of weird having this bit of wire coming out of my arm, but don't worry it's all wrapped up under a gauze.
I've decided to return to work next Monday as I'm starting to feel a bit bored at home and it would be nice to slowly get back into the groove of things. I think I should be ok, I'm mostly worried about catching some bug either on public transports or at work.
I don't have much to say today as I'm still feeling somewhat tired but I thought I'd come out and say hi...

Weird science

Well I hear you say ..what happened ?! ....the short answer is I don't know any more today than I did yesterday.

I kind of imagined that it would happen just like in the movies when the oncologist tells you roughly how long you've got to go....instead I was given a lot of positivity about nothing.
First of all the guy that did the last scan didn't bother to compare them with the original scans so that was not really helpful.

My oncologist however did a rough comparison and told us that so far it looked stable. Now the size of the liver met was 12.5 cm originally and it's now 14cm but it is acceptable because apparently there is no way to measure any tumor precisely therefore you have to give every measurement a 1 to 2 cm leeway either way. On top of that they were hinting that some of the other tumors went from 2.5cm to 1cm, some just didn't show up and some appeared to be showing in new places but as they were really small it may very well be not a tumor in the first place. The oncologist also explained that it is still early. However he did say that if it's still the same at my next scan, they will definitively think about stopping the chemo.

So to make a long story short, it's roughly the same as before, I'm looking at another couple cycle of chemo before my next scan. If there is no change then, I will probably stop having it....because there is no way of knowing for sure whether the treatment is not doing me more harm than good.

I think I'm a bit disappointed at this stage, I was really hoping to know more about my cancer by now. The oncologist said that I would need to have a CT scan every three months so that we can better monitor it. Obviously when it's like that, you can't help wondering whether the chemo treatment is really doing anything, what' s to say that the results wouldn't have been the same if I had done nothing ....but I won't dwell on that.

Anyhow I'm not depressed nor am I jumping up and down with joy, for the moment it appears to be stable and that's good enough for me. The way I look at it is that I'm going to be having a whole lot of scans done and I can't let them control me, so I'm just going to enjoy the time that I have and deal with any new issue when it arises.

Ignorance is bliss

Well it has been a hell of a ride so far but doctors have been rather vague in regards to giving me a prognosis. That's mostly because they just do not know as to how long I've had those tumors and how aggressive is the cancer. Cancers are usually evaluated in stages and grades, now a stage I cancer is usually a small tumor....I'm stage IV ( that's as far as it goes ) that means that the cancer has already spread to distant places ( metastised ).
However the tumor needs to be graded and that is perhaps the most important factor as it will give you an idea as to how fast the cancer is growing.
Up till now I haven't put much thought into it but on Friday I'll be going in for a new CT scan which will give the doctors the opportunity to compare them with my previous scans and give them an idea as to the progression/regression or stagnation of the disease.
I will get that answer on Monday, I'm not going to fret for the next few days over it, I'm going to enjoy my ignorance and deal with it when I come to it.

Does my head look big in this ?

Today I wanted to thank 'Dramalish' for the beanie I received about a week ago. It's very comfortable and warm, now I have a beanie for just about every occasion. I would also like to mention , although unofficially, that a box of Jelly Belly candy was hidden inside the package...I say unofficially because officially I'm not supposed to eat candy due to my Diabetes.....
Having said that my doctor tells me that Diabetes is the least of my problems right now and not to worry too much about my sugar levels during my Chemotherapy treatment.
Now I'd like to point out that it doesn't mean that I eat really bad things....I'm still trying to be good but one could say that I have relaxed my eating habits just a tad.

This package was also open by the Australian quarantine inspection who probably have me on file by now as a beanie trafficker for all I know.... ( maybe they thought that the Jelly Belly Candy were ecstasy tablets. )

Life's like that

I've been recuperating lately spending most of my days either dozing off or doing creative things on my computer, by the way, I have a new computer as of last weekend. My other computer was 5 years old and really struggling with simple tasks, I had been talking about replacing it long before my diagnosis but always made a point that the money would be better spent on something else.
My diagnosis brought up a whole new way of looking at purchases in general, for example just before my diagnosis, I was looking at upgrading our internet speed connection meaning I'd be looking at taking on another 2 year contract whereas we have finished our previous contract and are currently free to do whatever we wish. Now with my cancer I live on a day to day basis so the idea of being stuck in a contract is a bit of a challenge as I can't help myself thinking that there is a possibility that I may not be around for that long...I'm not being negative, it's as much a possibility as the possibility of living another 30 years.

I think I'll have to wait for a prognosis of some kind before I look at 'long term' purchases. Some people may think that because you have a terminal disease it means that you should not care and spend millions but the reality is that debts would be passed on to Vee and it's the last thing she'd need.
So back to the computer, I probably wouldn't have taken the first step of ringing the store if it wasn't for Vee. She reminded me that I spend a lot of time on the computer and that it has become an essential part of what I do, besides she couldn't put up with my constant whinging and shouts of frustrations any longer and I don't blame her. On that day the store happened to have a special on and so I acquired this brand new Apple Mac 20" monitor with all the trimmings. It works wonders.

It has been really cold and crisp lately, this morning I rugged up, passersby probably thought I was on my way to conquering Mount Everest, either that or I might have been a lost ski instructor...I thought I'd walk to the shops to get some more apples and some bread. The local shops are not that far but it is a bit of a steep grade to get there. I could tell my body had forgotten how to exercise, my legs really ached going up that hill and I almost felt like I was going to have to stop but I pushed on and finally made it to the top sweating like a slave.

I got to the shops bought my apples, saw that my favourite chocolate was on special so grabbed some then went to the bakery to buy the bread. They were selling custard croissants there so I asked for one, the man serving was Vietnamese and I'm not sure that his English was all that good because I had to explain to him twice that I wanted some of the bread sliced. Anyhow when I got home, I made a cup of tea and opened the bag with the custard croissant and instead saw two plain croissants !

Now for most, it would be just a mistake, but for me it's an ongoing issue, I strongly believe that wherever I go there is a dark little cloud moving about, above my head, that follows me everywhere.

Vee can testify of this, each time I order something in a shop or at a restaurant there is a great chance that I get given or served something totally different. It's happened so many times that we just laugh about it now but it can get frustrating also at times.

Anyhow both plain croissants were nice although I really would have liked to have the custard one !

Does my head look big in this ?

Today I'd like to thank Anna for handmaking this beautiful beanie from Alpaca and Silk and sending it to me just in time for the wave of cold weather that has currently taking root around our area. I like the colour, it goes well with my eyes and it is very very soft.
I can tell it is real Alpaca because the package was opened by the formidable Australian Quarantine and Inspection Service and our sniffer dogs can detect a whole Alpaca even when hidden in small packages.

Quoting the note that was left in the package: " This mail has been opened by Australia Post for Inspection by AQIS. AQIS screening process, which uses detector dogs and X-ray machines, indicated there may have been an item of quarantine concern in your mail. No items of quarantine concern were detected.....nothing has been removed."

In other words they didn't find the Alpaca, that's because it was so well blended and camouflaged within the silk...

Chemo sabe

Well there goes Cycle 2. It has gone down a lot better than Cycle 1, no emergency hospital visits, no passing out and no throwing up.
That said nausea was still present notably during my second day but thanks to a cocktail of drugs previously given to me by the nurses, I managed to keep everything down.
My appetite is good although a bit weird, yesterday I indulged in "sour" food such as mandarins, oranges and lemon juice. Chicken is my meat of choice although tonight I shall go lamb. I tend to favour savoury dishes in the early days of my Chemo. I enjoyed my greens, my salads with balsamic dressing..
We had a beautiful day today and I thoroughly enjoyed sitting outside in the sun sipping my sugar free cordial listening to the birds chirping in the tree tops.
I've been feeling quite run down yet because I'm on the steroids it makes me restless so I can't quite stay still for too long doing the same thing.

Garcon ! is that a hair in my soup ?

Well my hair is still progressively coming off since last Friday. It's mostly noticeable on my scalp at this stage, the hair roots actually hurt a bit as I run my hand through my hair as it breaks off. It's not the best look, kind of like a half plucked chicken is the best way I can describe it..

I want this blog to be an honest account of my journey so I've asked Vee to take photos of me through this ordeal as I want people to see exactly how bad it can get. Anyway I can joke about it now but I'd be lying if I told you it didn't bother me, I can't wait for all the hair to be gone, the transition stage is definitively an ugly stage.



Also I found this cheap T-shirt on the weekend, I probably wouldn't normally have bought it but I thought it was appropriate under the current circumstances.

Fallout

If I've been quiet lately it's because the last few days have been emotionally more difficult. You know when you hear about someone fighting Cancer, it's not just about the physical challenges that it entails but it is also mentally very challenging.

For the most part you try to keep a brave face, you try to find distractions and sometimes you even manage to joke about it but whatever you do the reality of things is always somewhere at the back of your mind.

It's a constant mental battle, a gnawing fear that you have to keep under control the best you can, because you can't let it take over, I don't know how long I have but I need to fight myself mentally in order to make what little time there is one to remember.

Usually you manage to feel almost normal for a few days and then something either said or read, a passing emotion, a stranger's happiness, acts as a trigger and the fear comes back.

When I went to see my surgeon last Tuesday he admitted that they couldn't compare my case to any other as no one had ever presented that way before. He also explained that if the Chemo failed to reduce the tumors, they wouldn't operate as it would be pointless. So I guess if the Chemo doesn't work, then they may try a different regimen and if that doesn't work...well I'd be looking at palliative care.
Certainly hearing him saying that they wouldn't operate brought everything back up but I feel that I need to ask those questions even if I don't particularly like to hear the answers. Knowing what to expect is helping me gaining a little control of whatever is left.

I had nightmares two nights in a row after this appointment, the first one I woke up both Vee and I as I screamed aloud during my sleep. I vaguely remember being alone in this dark house and hearing voices coming from the different rooms. The second dream I was a soldier during WWII and a German soldier was approaching towards me, I aimed my gun and fired but the barrel was empty, I fumbled into my pockets and finally found the cartridges but I couldn't load them into the gun, my hands were shaking, I was terrified, when I woke up, I was cowering under the blanket.

Everything you do in life is geared towards learning to live, death is not only a taboo subject but it's something we tend to associate with old age. There are plenty of people who can give you advice on how to live your life but there's no course out there teaching you about dying young.

How can one's mind come into term with witnessing one's own demise ? Of course we all need to accept it at some stage, as that is the only absolute truth in life but It would have been nice to have more time to think about it.

I was only joking last week how I still had all my hair and felt almost cheated but this morning Vee found a few patches missing at the back of my neck and then when I had a shower I noticed a bigger patch above my ear....
Vee also found more hair in the bed on my pillow...I didn't feel like joking for the first few hours after that....

Now I feel a bit better but the patchy hair definitively gives me a poxy look, It's kind of weird, I mean, you look sick but it's not the sickness that makes you look sick it's the so called antidote !

Jackpot

Not only do I get a rare cancer but I also get the jackpot as it appears my rare cancer presents itself in a rare manner...why couldn't have I won the lottery instead, surely the odds were better!

Prof X called to advise yesterday that the biopsy review done by his staff also confirmed LMS but he admitted still being rather puzzled by those results.
His advice was to continue on with the current treatment and then reassess after my second lot of Chemo. If the current treatment doesn't show any improvement he suggested that perhaps a new biopsy or even surgery to remove a bigger sample ought to be performed and the matter re-examined.

I have to admit that no matter how positive I try to be, it's not the kind of news that exude confidence. For all I know I could be the first case in Australian history...My GP often says that I am most likely the talk of the town in medical circles.

I've got an appointment with my surgeon tomorrow, and although it is still a bit early in my chemo treatment I've got a few questions regarding possible future surgery which I never really got a good opportunity to discuss with him previously.

Well part of me was hoping that I could tell you that I had Germ cell cancer even though the odds weren't really in my favor but it wasn't to be.

Does my head look big in this ?

"Does my head look big in this?" is going to be a segment showcasing all the hats that will keep my head warm over the next few months.

This week I received a genuine all American beanie made in Chicago, Illinois. A big thank you to Mel. Most clothing items you buy in Australia are usually made in China so to be the proud owner of a real American product makes me all warm and fuzzy, as much on the inside as it does on the outside.

Positivity

People react in strange ways when learning that you have cancer. Some people will offer to help in any way they can, some people will pretend nothing happened, some people are really inquisitive and others are just convinced that positivity is the key to beating the disease.

There is no proof whatsoever that a positive attitude while battling Cancer is going to change you physically for the better. In fact if anyone truly believes that, it would imply that those who have passed away only have themselves to blame.

When the word "positivity" is brought up by someone in regards to my Cancer I must admit that it makes me cringe.

Sure it's nice to have a good outlook on life in general whether or not you have Cancer but some people need a serious reality check. Walking around with a cheesy smile chanting I can do it ! I can beat this! is not going to make my life better, the plastic smile machine just isn't for me.

There are days I feel like shit, I'm not being negative, I'm just being honest.

There are also people who while not battling cancer themselves feel like experts thanks to spending hours watching Oprah's TV show and have a lot of assvice to offer. It's not because one person wrote a book called "how I beat cancer by drinking my own urine" ( I made this up..) and this has been presented a number of times on a current affair show or published in the latest health nut magazines, that it is the answer to every Cancer patient out there.

I know that people mean well when they say " you just got to stay positive", it's just that it doesn't sound right. There are going to be times when I will be feeling positive, times when I will be feeling down, times when I will just want to be myself , times when I will be strong, times I will be angry, times when I'll be realistic and a time to face the truth.

Asking me to remain positive at all times is nothing short of denying me the right to express my own feelings, it's just adding to the pressure of living with Cancer.

Feeling Blah

I'm sure some of you are awaiting to hear about my visit with Prof X, well first of all let me say that it was a tiring and difficult day not only because of my post Chemo symptoms but mostly due to the fact that my Dad was facilitating the appointment.

My father and I don't quite communicate on the same wavelength and we rarely spend time together so this was an extraordinary day to say the least. Don't get me wrong, I think that my Dad is a great man who has achieved a lot in his lifetime but there is no hiding that he has never really been a family man as such.

So we were originally seeing this guy to see whether I would be elligible for inclusion into a trial, Prof X looked at all the info and scans and then went on saying that the trial thing was the easy part.

Then he proceeded on saying " I don't want to give you false hope but I think that for me what is important is to make sure you have been given the correct diagnosis."

As I stared at him with a stunned mullet look on my face he went on saying that my scans did not present like a Sarcoma, he said normally Sarcomas do not jump from the muscle to the liver, rather from a muscle to the lungs, it is also rather unusual for a sarcoma to go to a lymph node. On the other hand he added that it appeared to behave very much more like a germ cell cancer.

Basically if it's a germ cell cancer then my prognosis is very favorable as long as I'm receiving the correct treatment, however this was just a theory and he was very clear that he didn't want to give me false hope.

I've had more blood tests done and at the moment I'm awaiting to hear back from his office regarding a final diagnosis. It's like one step forward, two steps backward.

Apart from that I'm finding it difficult to sleep, I probably average about 3 hours a night, I feel hyper up until the afternoon, cannot stop eating, Vee says it's probably due to the Steroid tablet I take in the morning.

I keep on checking out my hair everyday to see if any has fallen and almost feel disappointed when I realise that I'm going to need yet another shave...

I think the whole lack of conclusive diagnosis by the medical profession has again raised its ugly head, its now been more than two months since we know that I have "something" but this is getting frustrating.

There are three possible outcome to that, it's LMS, it's germ cell or it's something new that no one has ever been diagnosed with before....

Winter is here

It has been a rather cold day today around here. I rugged up and went for a short walk in our local park which happened to be deserted.
I spent most of my day working on and adding new works on my Redbubble photopage, I drank lots of warm tea which in effect is unusual for me as I've always been a coffee person but I find the taste of coffee rather distasteful since my Chemo.
It's really strange how it affects some of your senses, another thing that bother me at the moment are bright lights especially neons like in the supermarket meat section etc...
I can tell also that something is happening in my mouth, I've been doing mouth washes on a regular basis but I've noticed that I may already be getting some ulcers....I know I've had a bit of a rough start with my Chemo but I am also very well aware that I am only starting and that other nasty effects are likely to plague me for the next couple of weeks or so....

Apart from that I got a call from my Dad who has been doing some good work in the background and has managed to secure us an appointment with Prof X, a renowned soft tissue sarcoma Australian oncologist who oversees all clinical trials in the state and works at one of Sydney's major hospital leading oncology unit.

The appointment is tomorrow, I'm not going there with any expectations but any chance to getting a foot in the door early or at least getting a second opinion wouldn't hurt. At this stage any info from the experts is welcomed.

To hell and back

The nausea did catch up with me on the third day to the point where I was loosing consciousness, I even managed to bump my head on the bathroom sink without realising it at the time. When I went to my last session, I was feeling a bit shiverish and a tad bit nauseated but the nurses kept on saying that I would be ok.
When I got home, I set up my alarm to remind me to take my medications and then had a bit of a snooze. Shortly after the phone rang. It was my work colleagues calling to see how I was going, it was great to talk to them, I still felt good at this stage.
I went back to bed and awoke with my alarm at 3pm, time for my MESNA tablets, I went to the kitchen and downed the 5 tablets given and then things got a bit blurry after that.
I remember feeling sick and sitting on the edge of the bathtub, I was trying not to throw up everywhere and doing my best to keep it down and the next thing I remember is waking up on the bathroom floor having no idea as to how I got there. When I dragged myself back into bed, the clock said 3.15pm but it's hard to say how long I was out for though.

I stayed in bed all that time until Vee got home from work and found me there. I remember apologising for the mess in the bathroom and no sooner had she cleaned it up I felt like throwing up again in the laundry sink where I passed out in her arms....I could hear a voice call my name from far far away but I didn't know whether I was dreaming or what, it took me a while to regain consciousness.

I don't know about angels in the after life but Vee certainly is my angel in this life. An ambulance was called and I was sent to Oncology unit of a local hospital for a 2 nights stay where they pumped me up with anti nausea drugs and loads of fluid non stop as I'd gotten dehydrated.

I left the hospital yesterday morning, the ride in the wheelchair from my hospital room to the car outside was emotionally difficult, I felt dirty, toxic and ashamed of what I had become, I felt dehumanised. I can't tell you how much I enjoyed the hot shower that followed once I got home.

It's another beautiful morning today, my body feels like its 1000 years old, everything I do happens slowly, everything I eat is like discovering a new flavour for the first time, even talking sometimes can be a challenge but I'm still here and I'm feeling stronger with every minute passing.

I would also like to thank all of you from the bottom of my heart for your kind words and offers of support to both Vee and I.

Chemical warfare

Same regimen but this time without the Doxorubicin, and I feel a lot better for it, so far no sign of nausea. Jan my nurse told me to take my other medication should it manifest itself again.
I finished my treatment at 1.00pm and then at 2 they booked me in for a heart scan as one of the drugs I'm on can affect my heart so they'll need to check that on occasion...( charming isn't it?).

" The beginnings of the modern era of cancer chemotherapy can be traced directly to the discovery of nitrogen mustard, a chemical warfare agent, as an effective treatment for cancer."
Courtesy Wikipedia

So basically they are poisoning you and then giving you drugs that are anti this and anti that just so that it doesn't totally kill you...no wonder it has so many side effects.

Life is a paradox.

D-day

Well today I was given my first chemotherapy session. The Nurse looking after me is a really nice older lady who's been working there for 11 years. She was very helpful and answered all our questions.

So how does it go ? I hear you ask, well first you take a seat, then the nurse comes around and put a cannula in your vein as the drugs will be dispatched intravenously. If your veins go bad then they'll have to put in a permanent fixture into my arm but my nurse said that my veins appeared good so hopefully it shouldn't be necessary.

Firstly they hook you up with some saline followed by an anti-nauseous agent called Novoban, I was also given some Maxolon ( anti-nauseous also) in tablet form for home should the need arise.

Then prior to the actual drugs being injected there was some serious cross checking with another nurse to make sure that I am receiving the correct drugs and dosage.

The first drug ( Doxorubicin ) was injected manually through a plastic syringe connected to the main line, it had a bright lolly red colour that affected my first couple of pees afterwards. This only took about ten minutes and apart from a cold sensation, it certainly was not painful.
Mesna a drug to protect my kidneys and bladder was given shortly after and this was then followed with Ifosfamide which took about two hours to go through.

I was given some Mesna in tablet form to take at two intervals today as well. All in all, we arrived at 9am and left at 1pm.
Halfway through my treatment I felt kind of high, by 2pm I felt mildly nauseated and by 6, I felt like I'd just woke up with a massive hangover, we had dinner at 7pm and it got progressively better after that.

Tomorrow I'll be starting at 8.30am and should be in there for a bit longer as the drug regimen will slightly different.

Buzz cut

Yesterday I had asked my sister in law who used to be a hairdresser if she would mind shaving my head. My hair was already short and in the past I had had even shorter hair but I'd never had it shaved entirely.
Since it's something that you don't do often I suggested that they give me a Mohawk to start with, to the delight of my teenage niece, and then creativity took over, here are a few pics of before, during and after...
It was a great day, my in-laws came for lunch and then more of Vee's family came around for dinner, we ate, drank and laughed a lot.

This morning, I shaved my goatee off and I now look like a tibetan monk, who knows, I may decide to keep on shaving my hair long after my chemotherapy treatment ends, as most said that it suited me and I tend to agree.

Camp Chemo

On Tuesday I'll be starting my Chemo treatment thus stepping into the unknown. You can only read so much about any subject but nothing beats experiencing it first hand.
For those who don't know, Chemotherapy is not choosy when it comes to killing cells, so while it tackles Cancer cells it also kills the good stuff resulting in an array of potentially mild to severe side effects. Hair loss is one of them but so is a higher risk of infection something, I'm most worried about.

Part of our shopping included buying products that may be helpful during my treatment. It reminds me of when you're a kid and you're going to camp and your mum makes a list of things you must take with you except this won't be much fun.

Antibacterial soap: No water needed. Just like in hospitals, it evaporates as you rub your hands with it. I got a big bottle for home and a small one to take with me should I venture out.

Sodium Bicarbonate: Used for daily mouth washes to prevent (hopefully) mouth ulcers.

Lip Balm and sun block to protect me from direct sunlight.

Baby shampoo: I know this may sound a bit strange since I won't have any hair but Vee read that it is good to massage your scalp with it...anyhow it can't hurt.

I also bought a 2008 diary just so that I can keep up with my appointments, at this time of the year they're real cheap!

If anyone can think of anything else please share.

Dysfunctional

I got pretty upset last night after talking to my brother over the phone. My family has been dysfunctional from my early teens and is spread between two far away continents. You'd think that me having Cancer would bring people together but nope, it's the same old feuds, resentment, jealousy and revenge that makes an episode of "Days of our lives" seem like a really simple story.

Everything is always complicated with my family, my father doesn't talk to my brother, my brother barely talks to my father and resents my mother and I'm sick of doing the mediating, beside I've got enough on my plate at the moment.

Today my better half and I went shopping and I managed to forget about everything for about a couple of hours, we stopped for coffees and "Krispy Kremes". I figured that this is my last weekend of my life as I know it and that I should not feel guilty about buying things for me or eating things I probably shouldn't be eating.
Shopping goes a long way as an adjuvant therapy for a lot of things...

Time

When I woke up this morning, I was surprised to find that my wife wasn't at home. I looked in our home office and saw a note on my keyboard and thought that she might have gone shopping although it seemed unusual. I took the note and read what to find in the fridge for my lunch and then it dawned on me that today was Friday and not Saturday as I originally thought !
With all that is happening lately I'm loosing track of time, Cancer must have its own independent time zone.

Orientation day

This morning I started to feel the fear creeping in as it came to me that this was all too real. I guess my mind is still trying to cope with my diagnosis and I tend to see myself from a third person point of view when people talk about my cancer. By 11h00 am I felt terrified but it eventually went away by early afternoon.

Today was "Orientation day" which consisted of a short movie about Chemotherapy and a general tour of the facilities, although I'd already read quite a bit about Chemo I did learn new things. I got weighted and measured and saw people receiving their dose either sitting in a recliner or lying down in bed. It had a very surreal feel to it.

I heard all about the possible side effects but I think that no matter how much info you read nothing can really prepare you as it all depends on not only drugs used but also dosage and cycles etc... I tend to expect the worse and hope for the best but is what I think to be the worse going to be anywhere as bad as the real thing ?

Champagne

Champagne starts with a "C" and so does Cancer....

Who would have thought that an innocuous glass of crappy Champagne would have propelled me into a scary world of so many unknowns. I rarely drink at the best of times but we had had this bottle of bubbly for a while and I thought to take it with us to celebrate our holidays last February. I only had one glass and was sick during the night ( my wife reckons it was off). Two days went on without any other effects and then I started feeling somewhat nauseated after each meal..
Back at home, I went to see my GP who gave me some tablets and an ultrasound referral in the event the nausea/pain did not clear by the end of the week...anyhow to make a long story short the ultrasound revealed a large tumor in my liver and another mass in my Psoas muscle.
It was thought originally that it was a Testicular cancer that had metastised. Not only did this diagnosis turned out to be incorrect but all blood and biopsy tests came back negative and was therefore told that it was rather unlikely to be Cancer but rather some form of infection. I was eventually admitted to the hospital for further testing and on results from a core biopsy of my Psoas muscle and a following P.E.T Scan was finally diagnosed with Leiomyosarcoma, (LMS for short) a rare form of soft tissue Cancer.
The PET scan revealed further smaller tumors in my hip, neck and lung. My first cycle of Chemo will start next week.

I've learned a lot about Cancer in those last couple of months, I've also learned a lot about diagnosis and how hard it can be to get it right when your disease is rare. I used to joke with my wife and GP that perhaps we could send over my story to the script writers of the popular TV show House.

Often people will say the silliest things without realising it....here are a couple that I've come across so far...Please have a chuckle if you recognise yourself, I certainly have.

"I've got good news ! you can pop the champagne ! It's definitively not Cancer!"
Here goes the C word again.

"We thought you may have had X disease meaning we could have sent you home with a handful of antibiotics and be done in a matter of months but unfortunately you have LMS."
Was that supposed to make me feel better ?