Update

I was meant to have another dose of intrathecal chemo today, but my white blood count was too low, so no-can-do. In addition they have taken me off all the chemo tablets - except the steroids.

In addition, addition, I have started a course of antibiotics to try and fix my cold and hacking cough.

I go back in a fortnight to see if I’ve improved enough for further treatment.

But otherwise I feel just fine - although rather tired with all the coughing and poor sleep. Appetite is rather lacking, but I'm not suffering any pain and currently am not on any painkillers.

Update

Rather busy week, starting with a CT scan on Tuesday to check out why I had pain around my hip. As predicted the cancer has returned to the central nervous system (CNS) and the doctors asked me to come in on Wednesday to Acute Oncology to have an MRI and discuss immediate radiation therapy. They seemed to be surprised that I only suffered some pain and hadn't lost movement in my legs.

My steroid dose was increased from 4mg to 8mg on Tuesday night and the pain went straight away. On Wednesday it was increased to 16mg. The mood swings and appetite haven't changed as yet, but I imagine it will shortly - you have been warned.

Anyway MRI results revealed a few more tumours that the CT missed, three that were touching the spine, some that aren't. So I had my first dose of radiation this arvo and will have one each day until Monday. Then (fingers crossed) I can fly to Brisbane to catch the end of the Transplant Games, returning Sunday. On my return I will be given another five doses. It was great that they were able to accommodate my trip, I have been looking forward to it for ages.

Update

Just to let you know I started Chemo #3 today - all going well, feeling stronger than a month ago. It is looking like I'm going to do six rounds instead of the planned four.

I can have a scan after the 4th round, but I think I'll wait until after the 6th.

Pain is increasing across my back, but not enough to take painkillers or to be a real problem, it just constantly reminds that I have cancer.

Chill

How others react to my terminal cancer ranges from funny, to confusing, to just plain annoying.

It was portrayed to me that my month long blog silence upset a few people the other month. Some thought I had walked off this mortal coil (or was about to) and thus they started to freak out. Sorry about that I'll try to be more communicative, but at the time all I would have said was "I feel sick - god I'm going to vomit - shit this sucks - where are the real pain killers?" As you can see I'm a big baby when the pain kicks in - after all it was just for a sore shoulder.

Now I have to say I don't understand this getting all stressed out and freaky. What is there possibly to freak out about, we all know the outcome of this illness, we just don't know when, there's been plenty of time to come to grips with it. So stressing every time I go to see the doctor or just have an off day is really going to make life hell for all of us.

For the record, so you can relax a little, after I die a friend will post a blog letting you all know - so there's no need to second guess what's going on or freak my family and friends out with hysterical emails/calls/txts.

Others have said that they are scared to phone me. I have asked close friends what this might mean, but all they say is that they "understand". That doesn't answer my question and quite frankly makes me slightly paranoid - am I really scary? I know I can throw a wobbly if you don't let me buy lunch, but to be quite frank I've already told you I'm paying (can't take $$ with you) and the fact that you ignore me or make a stupid fuss of it all is just plain annoying and you're lucky a wobbly is all you get. Maybe they really mean 'uncomfortable' rather than scared - please don't - if I'm not up for a conversation or a visit I will tell you. Sometimes you might catch me in a bit of a mood, but I don't think that this qualifies as scary.

Now I appreciate that this is a difficult period - some of you have been through this, usually with an older relative true, but still it can't be easy. I try to help you all by talking about it - surely I must bore the pants off you all with the talk, talk, talk. But really the fact is we all die eventually and sure cancer isn't the greatest way to go, and sure 40 is way too young, but I can think of a lot worse so let's just make the best of it, relax and get on with life.

Ringo Starr would say "peace and love", I say "chill".

Whew!

After a couple of months of testing for cancer and weeks in hospital for liver complications, the unstoppable Julia has come up clear on last weeks Melbourne PET Scan and Bone Marrow test.

As you can imagine this is a huge relief for all the family and anyone that knows my full-of-life niece. Stress levels have dropped and we can all take a huge sigh of relief.

For anyone who's had the pleasure of meeting Julia they remember a kid with a fantastic sense of life and easy humour - she will go on to remarkable things and will be remember for amazing feats.

Big hug Jujus.

Treatments all over

Well that's it, it's all over, I've had all my treatments. So apart from the odd catchup with my Haematologist, I can try and avoid hospitals for awhile - yay!

Actually thought I would be devastated that I couldn't do anything more to abate this cancer, but actually feeling okay about it. Apparently I will feel somewhat worse over the next couple of weeks due to the radiation, but it has been easy so far - just somewhat tired.

Spoke to the Radiotherapist about what to expect as the cancer takes control. Will have headaches and some nausea and loss of motor skills. But mainly I will become more and more tired and want to sleep all the time and eventually just stay in bed - actually sounds quite peaceful.

Today I met with the lady from Mercy Hospice to discuss my care as the cancer takes hold. Very comfortable with the services they offer and good to know that there is back up for when it gets difficult. They have nice newly renovated facilities at St Mary's College on College Hill with spa pools and massage facilities - oooh.

Chemo #5

Chemo # 5 has been cancelled. I reported headaches and other problems so Doctors decided to do another CT scan to see what's what. The tumour is growing again, which means the chemo isn't working.

They have referred me for Radiotherapy, and at this stage I'm waiting for a meeting with the Radiotherapist to see if this is a viable option or not. Unfortunately I might not see them till next week - so I have nothing to report for now.

As you can appreciate this is difficult news to process at this stage in the treatment. I had my head around being terminal, just not so soon, but I suppose I've past the 3-month prognosis.

So conversations have moved from short holidays to palliative care. The funny thing is that I'm the healthiest person in the ward by a long shot.

Chemo #4

Well Chemo #4 actually happened last week, but I forgot to report on it.

Lowlights:
1) My Brain Tumour Buddy died this week. Such a great guy, I will really miss our conversations. He only had 1 week where he was in pain and realised he was "down to the wire". So it was very quick and the pain was manageable with morphine, so he didn't suffer. Obviously this gave me a big fright - he was told he had 3-6 months, just like me.

2) My niece Julia is still in hospital (along with her Mum) which means 6-weeks in jail. I must say they handle it well, I struggle with 5-days each fortnight let along full time, although they did get to spend Saturday night at home, until another temperature spike! The doctors are still trying to figure out what's wrong.

3) I have a 24/7 headache now. It started 10 days ago requiring no painkillers and built up till yesterday where I took codeine, panadol, tramadol and panadine and it still took 7 hours to get on top of. Overnight I slept for 9 hours and its back to requiring no painkillers - weird. Trying to figure out what it is, hopefully the doctors can pinpoint the source, hopefully it's just poor posture pain!

Highlights:
1) Was released on Thursday - a day early - because I was healthier than everyone else. Fine by me, sleeping at the hospital is never good.

2) Came off the steroids on Wednesday, so now it's just a case of some dieting and get this extra weight off. I forgot to have lunch today, which is amazing - haven't missed a meal since the 20th of May, let alone feeling hunger pains.

3) Julia is still in hospital which means I have someone to hang out with each day. Mind you she's back to hospital school tomorrow, so I'll struggle to catch up with her. Her school buddies are much more interesting than Aunty Unu (me).

So I've been resting up today, preparing for Chemo #5 tomorrow. The hospital is a very busy and tiring place to be. Hopefully they'll let me out early again, but I suppose the depends on the headache.

Highlights of the week

10. Saw my CT scans – the before and the after – thank god I made the decision not to see the before, until the after was available – very bloody big it was, no wonder I had a grand mal seizure. Surprised it didn’t kill me on the spot. Unfortunately the printout isn’t of good enough quality that I can scan onto the blog, but suffice if to say – bloody hell.

9. They are taking me off the steroids – obviously they do this in stages as I believe it can kill you if you just go cold turkey – or maybe I’m being a tad dramatic. Anyway I’ve gone from a daily dose of 24mg Dexamethasone to 12mg. On Monday I go to 8mg and the following Monday to 4mg. Mum & Dad are pleased – I was getting rather argumentative, stroppy and aggressive – but since I got the argumentative and stroppy off Mum she can’t really complain too much – hehe. The aggressive wasn’t much fun though (and is still there a bit). Add to that the desperate hunger and weight gain, I was really feeling rather out of sorts. Looking forward to some weight loss and getting my face back.

8. Late night visitors had to con their way into the hospital this week – very successful they were too. So I have gained two extra brothers and one sister. But guys don’t think that you impressed me enough to get yourselves into the will :o)

7. Marina Erakovic has been fantastic this week, winning her first two singles games to get into round 3 at Wimbledon. I really think it is possible that she can win the next round against Tamarine Tanasgarn from Thailand. Pity she lost out of the doubles, but at least she can concentrate on one thing now.

6. Cool weather – I love storms and rain – and the hail is just an added bonus.

5. Was released from hospital today. Skipped around the ward a little too happily and loudly – forgot that everyone else was stuck there for the weekend – ooops sorry about that!

4. I visited the house renovation today and there is only one word for it – wow! Darling flatmate (DF), builders, labourers, plumbers, electricians, and the outstanding support from my ex-work colleagues and numerous others, has meant that the house should be ready to move into in the next few weeks and I’ll be able to spend some good quality time there. It was all quite overwhelming; it kind of doesn’t seem real actually. Poor DF has done the entire organisation without me. The only bonus for DF is that she gets to choose everything – fortunately she has good taste, so I’ve got nothing to worry about. To assist I’ve loaned her my Cancer Card, which has many more magical powers now that it’s been upgraded to Cancer Card Plus – plus meaning terminal, which I think will even hold sway with the doctors and nurses – but best not push that one till it’s needed. Anyway it’s getting a good work out by DF – the housewarming party is going to have to be huge.

3. I have organised most of my affairs now – it is so liberating to know everything is set right. It’s provides me with such a sense of calm that I have to recommend that you all do it. Now would be good.

2. Have been doing a marathon viewing of ‘House’ lately – am half way through Season 2 and somehow I had missed half the episodes first time round, so all good. Just love this show, it must easily be the best character ever invented for TV. Haematologist III said that it wasn’t at all realistic and I’m sure he’s right, but realistic would be incredibly boring to watch if ward rounds are anything to go by. Anyway, I watch House for the character, not for the medical aspect. I’d go so far to say that I might even love Dr House – I’ve never fallen for a non-person before – very weird. Oh well I’ll just say I love Hugh Laurie instead shall I :o)

1. Gosh the pressure to come up with a number 1. Thinking, thinking, thinking – oh I know, hair isn’t falling out. I cut it back in anticipation of baldness, but it doesn’t appear to be going anywhere at the moment. Oh well at least it’s easy to manage short.

My mission

Now I just have to temper all the excitement in regards to these results. I haven’t really explained to you how this will cancer will play out – but this is probably what will happen. As the cancer appears to be dying with this treatment I will possibly hit this tumour for touch. However what usually happens with this kind of aggressive cancer is that it returns. We then attack again, probably kill it, then it likely returns, we attack it again, we kill it, it returns and so on and so forth. Eventually the cancer becomes chemo resistant or the chemo becomes too toxic for me. At this point treatments stop.

So for me the central issue is how long it is absent each time – this is the big unknown – but this is my key to more time.

So my mission is to be around so long that you all eventually say “good god woman, you said you were dying, you’re getting really annoying, enough already”. Once you’ve all done this, then my work here is done.

Scan update

Well just a quick update ... Darling Haematologist just popped by to say that the scan shows that the treatment is working. There is still cancer there, but the drugs are getting thru the brain-barrier and tumour is breaking down – so we will carry on with the treatment – yay!

We are still waiting for the Radiologists report and a final protocol decision, but it is looking more positive than not.

Christ might not be able to sleep with all the excitement. Well actually more likely not to sleep because I have to get up every two hours to go to the loo – soooo much liquid is being pumped in – it’s really quite amazing how much ones skin can stretch.

Chemo #3

Well back at hospital today for the week for Chemo #3. CT scan at 2.30pm, but imagine I won’t get results until tomorrow morning at the next doctor’s rounds.

But good news – they have halved my steroid dosage – hopefully freak status reduces, along with wanting to eat the whole fridge every few seconds.

Here is the only photo I’ll let released at the moment of me and my darling nieces (DN1, 2 & 3). DN2 is also up here at Auckland in StarShip with a blocked bile duct – which they have operated on and hopefully she’ll be allowed to go home soon – she is getting really, really bored, but in true DN2 style is still going strong and great to be around. This is of course nothing but convenient for the family – one visit, two patients.

Fortunately, I’m very mobile so I just wander around the hospital whenever I feel like it. And now I’ve been set up with a Vodafone connection on my laptop, so happily sitting looking out the window at the trees of the domain and keeping in contact with everyone. Feel more like a human being connected to the world.

Warning: contains religious content

I'm never shy to discuss a topic, and since friends - and strangers - seem to be bringing up religion at regular intervals at the moment, I feel free to raise this topic all over again - don't blame me, you guys started it.

I thought everyone knew that I was a die hard atheist, but since it still is a topic of conversation obviously some think that since the end of my life is in the foreseeable future I would suddenly find some kind of spiritual belief and go against a lifetime of knowledge. Sorry to disappoint, but I'm still a staunch atheist and will be to the end. In fact, if at all possible I'm stauncher.

Some of my more humours agnostic friends have asked me to tap them on the shoulder if there is something on the other side, but since I feel they might have a tendency to be a little to eager to see me around, I've decided that I will only tap my other die hard atheist friends on the shoulder - these guys are less likely to see or hear things :o)

But seriously, this does raise the topic of my survival. I know that because I don't pray, or meditate, or spend my days with continuous 'positive thoughts', some of you will be thinking that I have wiped out my chances and if only I turned to the spiritual world I would be saved or add on extra years to my prognosis. A study done in Melbourne has shown what I thought would have been blatantly obvious that positive thinking makes no difference to surviving cancer and I add the same to prayer and meditation. The pressure that is put on patients to be positive all the time is just plain cruel. About the only thing staying positive probably will do is make life easier for friends, family and nurses - and in this matter I think I have a good attitude and am more than happy to discuss the whole cancer and dying issue to anyone who can handle it. And I'm happy to say that most can.

Then there is the other religion that seems to be completely faith based - the alternative health treatments. Having spent most of my life eating whole foods and avoiding chemicals I still managed to get cancer. I continued this health kick (except for my daily Gingernut fix) during my last bout of cancer but this didn't stop it returning. Another Melbourne study also debunk such things as Supplements and Green Tea.

Every alternative therapy that I've read about has absolutely no evidence that they work, yet the advocates talk like these treatments are miracle cures - they will advertise the case of one outlying patient 'that had been sent home to die' by the doctors, but had taken on this alternative treatment or other and survived. Never mind that they had been on chemo and radiation for that last year. Never mind that no studies are ever done on these alternative treatments. And never mind that they simply don't work - the pressure to pursue all this stuff is incredibly invasive and somewhat stressful.

But I'm starting to rave, so I'll sign off now :o)

PS: CT scan on Monday - so big day to see if the tumour is shrinking, or not. And no I'm not having thoughts (positive or negative) about this outcome - just simply a little nervous.

Bugger!

Well what a difference 3 hours makes in one's life. I literally met with my Haematologist at 8.30am on Tuesday the 20th to be informed that the latest CT scan had come back well and the cancer was still away. At 11.30am I had a seizure and was rushed to ED, followed by a CT scan of the head to find that the cancer has spread to the brain and is approximately 5cm in size. Fortunately my trading partner Marc was with me at the time and was able to get me to hospital rather promptly (poor bugger).

As you can appreciate a tumour in the brain is not good, treatment is difficult through the brain barrier, so I have to say that the odds of full recovery is only about 2-5%. The initial diagnose from the admitting doctors gave me a survival time of 3-6 months. However, they have been a little more positive than this since and we will look at this time frame again after my next CT scan in a couple of weeks. But in essence it is terminal.

I have had one chemo treatment already and another coming up in a week on the 9th of June. Following this I receive another CT that will show if I am responding to the chemo (or not). If responding then it is full on chemo (probably with steam cell transplants) and this should extend my time frame - no idea how long, it is just going to be a wait and see kind of thing.

So the first week I was fairly shattered emotionally and was suffering a very sore neck and was rather fuzzy brain, but feel much better now and the brain functions reasonably well (well no major complaints). So I'm back at work for this week and will drag my laptop into the hospital for the week of the 9th.

Sorry for the rather frank diagnose, but that's life and hopefully that chemo can get through to the tumour and I can push out a few more years - we shall see.

PS: that isn't my head scan - still haven't seen it. It sits deep in the left side of the brain and will probably cause right side motor skills problems, but shouldn't effect my personality too much :o). Well that's the theory so far.

Rules for life #2: sleep is heaven

Well it's official - I've gone mad!

It has now been 4 months since I've had a full night’s sleep - #*&#^&!@ - and I've hit the wall hard. Can't walk straight, can't think straight, have fuzzy brain, burst into tears under stress and worst of all, I cry at sad TV moments! That's what my girly, girlfriends do, not me! Well not very often anyway.

God sleep is so important - life as we know it ceases to be the same and in fact ceases full stop if deprivation goes on for too long. Every part of you suffers - mind, body and soul.

I can see why interrogators use sleep deprivation to get confessions out of prisoners - hell if Helen or John could guarantee me 12 hours sleep, I'd vote for either of them in the blink of an eye. Mind you that's not even that fast these days - takes about two seconds to take my eye lids down then up again and then another two seconds to focus. I am prepared to sell my soul for sleep, maybe even my first born.

And don't put me on a jury for the man who shoots his neighbour after said neighbour kept him awake just one night too many - I'll acquit him in a second. Probably give him a Victoria Cross for courage under fire to boot.

As it turns out there appears to be a medical reason for all this. After feeling like Wonder Woman a few months after chemo I started to go downhill again. Initial panic - thought that the cancer was back - not so, just the treatment stuffed up my hormones. Hormones those wonderful things that we know little about, but can turn one’s life into misery. To add insult to injury I've stacked on the weight - looking forward to the 6-month struggle to get that all back off. But it should be easier to get to the gym once I can achieve the sound-asleep status again.

So I've got a two week wait to see the specialist Endocrinologist - feels like a life time. In the meantime don't expect anything of interest out of me and I may burst into tears for no apparent reason, and yes I realise that this doesn't fit my character, but it should be amusing for you all anyway.

So Rule for Life #2: Sleep is heaven - get heaps of it - interrupt sleepers at your own risk and with no sympathy from me should you incur injuries. In fact this should really be Rule for Life #1.

Infidel & proud

There were parts of 2007 that I enjoyed immensely, the major one being the worldwide discussion about religion, god and the fanciful nature of both, thanks to the likes of Christopher Hitchens with God is not Great and Richard Dawkins with The God Delusion (I struggled with Dawkins’ book - but still, at least he was out there talking the talk).

Due to my illness last year, the thought of death was understandably at the forefront of my mind, as I am sure it was for everyone I knew - some would talk about it, others would not. I thank those that did talk - it couldn't have been an easy discussion for them at the time, although it was a great relief for me to articulate my thoughts and plans.

There is a saying that goes "there are no atheists in foxholes" implying that atheists deep down believe in god when put under life threatening conditions. Having been in that metaphorical foxhole I can with 100% certainty say there most definitely are atheists in foxholes - and I’m one of them. Although I did not want to die so young, I was not afraid of dying. But my lack of fear is not why I’m an atheist, even if I was terrified at the prospect of dying, I’d still be atheist. I'm an atheist because that is the only rational possibility.

I actually think I could turn the foxhole scenario around and say that on a sunny day at the beach all believers are atheists. The only reason I can fathom that they cling to their belief, is fear: fear of dying, or fear that life does not have that certain meaning, or fear that without religious structure life would be too chaotic, or fear that their family and friends would shun them should they not follow like sheep.

What kind of horrible mental gymnastics must this take - to dispel all the facts around you and cling to the impossible, just because you are afraid - sounds like a quick path to mental illness.

Many New Zealanders at this point would say they are not religious and in the face of such atrocities perpetrated by catholic priests – and really just the sheer stupidity of the bible – many New Zealanders have turned away from organised religion and god is definitely on the out. One would think that this was fantastic and New Zealanders were now free to turn to rational thought patterns. But alas no, many are turning to psychics, star signs and other such new age crap and yes I do hold the opinion (based on observations of my mystic friends) that these people suffer mentally for these pursuits. It is also unfortunate that women are more likely than men to wallow in mystical and spiritual fantasies.

Then there is a fraction of these mystic types that actually declare that they are atheists. They do not attend a church and do not believe that there is a god, yet they still hold the opinion that there is some kind of super-natural force that or that there is life-after-death and yet they label themselves atheists. Please everyone an atheist is one that “denies the existence of a deity or of divine beings”.

And I’d just like to say to all those that are wondering:
* no, your pleadings with god did not cure me of cancer - the doctor did;
* no, I did not get cancer because of some bad Karma in this or any non-existent previous life;
* no, stress does not cause cancer - if it did I would be dead by now from the stress of listening to believers for the last year;
* no, having a positive attitude does not mean I'm going to survive, and being negative will not mean the cancer will win. The pressure to always be “up” was really just rather annoying and stressful;
* no, I did not suddenly catch religion during my chemo and I'm not suddenly in touch with my spiritual side;
* no, I did not appreciate you trying to convert me over to the dark side - I am enlightened and will stay this way until my dying days.

And on that last point: I’m sure that one of the jobs of hospital security guards is to throw out religious vultures that prey on the scared and venerable in times of stress.

PS: No, taking large quantities of vitamins or aloe vera will not cure me of cancer and there is no, none, zilch evidence that it does. Your new age herbalist/natropath did not cure your uncle, aunt, mother, friend of cancer it was the chemo, radiation or medical treatment provided by their oncologist or hematologist.

Yes, I did have and still do have an almost impeccable diet (better than anyone I know) and a healthy lifestyle, I do not smoke and drink very little. I use beauty products that don't have nasty chemicals in them, never use normal deodorants and eat mainly organic food and yes I still got cancer. There is nothing that I can conceivably have done to prevent this - that fact that I got cancer and you guys didn't is a big mystery to me. There is a possible (and unsubstantiated) linked between pollution and Lymphoma, but since I run a very energy efficient car and can only think of about 3 people that consume less than I do, I think I've done my bit to keep the pollution levels around me down.

Help! Cancer Card Expired!

Now 2007 was not the best of years for me. Cancer came up on me through the end of 2006 and smacked me to the ground by the 19th of March 2007 when I was hospitalised, informed two days later that I had aggressive stage IV Non-Hodgkin Lymphoma and chemotherapy had to start pronto.

But every cloud has those proverbial silver linings. The first being, I finally knew what the hell was wrong with me - I wasn't a hypochondriac after all. And second, I suddenly was a signed up member for the all powerful, all conquering cancer club and best of all, they issued the card of all cards, the lord of the cards, the card to rule us all - the Cancer Card!

I was put onto this card whilst reading Cancer Vixen that a friend so kindly brought for me early on in the treatment process. It is a very funny autobiographical cartoon book by Maria Aocella Marchetto, a New York cartoonist who went through breast cancer and documented her experience with great humour and accuracy - I highly recommend it to all cancer sufferers.

Anyway back to the Cancer Card. Its main benefit is that it gives you the ability to pull it out at any time* and wave it around and say "no-can-do I've got the Cancer Card". It enables you to get around doing all sorts of obligations and nuisance of normal life. Things such as boring cooking, doing the boring dishes, boring cleaning, going to any & all boring functions, staying at any boring functions, taking part in any boring conversations. In fact the old Cancer Card gets you out of doing anything boring at all if you don't want to – work included. Fan-bloody-tastic, should have got cancer ages ago!

The mysterious thing about the Cancer Card is that its power increases the sicker you become, so after about your 4th course of chemo its power will probably be at its peak and provides many, many a free-pass. The only thing Cancer Card can't actually do is cure cancer.

But I noticed a disturbing thing the other day - mine had vanished! No I hadn't left it in the car to be stolen by the local yobs. But ever so slowly, as I got better and better, its power had diminished. It's like a muscle, the less you use it, the weaker it becomes, until eventually it withers & dies.

And bloody good riddance too! Good riddance to the cancer, to the Cancer Card and to 2007!

* Cancer Card is only of significant use if you have friends & family around to pick up the slack and help you along - so make sure you don't piss them off too much.

* Cancer Card doesn't work at the hospital - they're on to us. Step on to hospital grounds and you walk through a barrier that suspends the power of the card until you leave again - tricky bastards these medical bods are - but love them we do.