Crud!

I got my results and they are not good.  Expansive new tumours in my lungs.  Dr Doom is surprised Im not short of breath, although I do have a worsening dull pain in my upper back which is apparently caused by the cancer.  The xrays show that my lungs are like swiss cheese.  The chemo and immunotherapy arent working.  Im starting a brand new drug called regorafenig in a couple of weeks, plus back on the chemo tablets.  When Dr Doom was explaining the treatment he said 'are you happy with that?'.  Im getting cheekier, so I said 'no, what do you reckon'.  Im not happy with any of it!  Next step, or should I say last step, is that he will look at clinical trials across the country.  There are none in Adelaide.  Would it be too much to hope for a clinical trial that can cure me in the Whitsundays?

Oops

Oops sorry that last post was a dud!

Ive just finished 7 months of the hard chemo.  I will be having a catscan tomorrow to see how things are progressing.  I am oficially crapping my dacks.  I cant go off chemo, Dr Doom gives me three months to live without it.  He thinks he will continue on with the erbitux (immunotherapy) but add irinotecan back into the mix (another chemo drug).  Ive had that before and I really hate it.  Two minutes into the drip and I start to feel sick.  Its cumulative, so not sure how long I will be on it.
But apart from that Im feeling pretty good.  No pain or breathlessness, just nausea and tiredness but nothing thats unmanageable.  Touch wood.  Hows that for weird!

Things have been flat out at home, and thats a good thing.  Tom is about to go on his first school camp for two nights (noooooo, my baby!) .  Belle and I did a jewellery making course.  We had so much fun that we have been selling it on facebook (look for our page, its called 'Mrs Bellamy' and we are donating the profits to cancer research.  We will be at the next Lollipop Markets so come say hi if you are there.  Be prepared for Belle to flog you a pair of earrings though lol.  We are also right into the vintage car club thing at the moment, which is heaps of fun!  I told Dr Doom this cancer thing is really interfering with my life.  He said 'what, the chemo?', as if he was expecting me to say I didnt want more treatment.  No I said, the cancer.  Im ready to be cured.

Wish me luck!

March 2014 update

Hiya!  Well I did it - shaved my hair off!  It was strangely liberating and while it looks awful, it feels really nice!  The erbitux is giving me a lovely rash all over, but apparently thats a good sign.  Today I woke up with a headache and a blood nose, so im feeling very much the cancer patient at the moment.  My cea markers have shot up from 4 to 12 which isnt good, but at the same time they arent always accurate so will take that one with a grain of salt!  Otherwise we are plodding along ok.  We will be at Victor Harbor on 4th May for a car club rally so if you are down that way come and say hi! We will be in a red convertible morris minor with a fox tail on the aerial.  Well Im off to buy some playdough for a school project......so as Tom would say, later dudes!

2014 New Year Update

Hi, and a belated happy new year!  

A quick post to update my friends on my progress.  

I had a catscan a few weeks ago.  It showed that the Folfiri chemo isnt working.  There is a new tumour in my liver that wasnt there 12 weeks ago, now its 6mm.  The tumours in my lungs have also continued to grow, the largest has grown by an extra half a cm.  not good news.

So now Im on Erbitux, which is a monoclonal antibody therapy, as well as the Folfiri.  It has brought me out in the most horrible rash on my face of all places.  Its like infected, blind boils.  Apparently this is a good thing because it shows the erbitux is effective.  Not everyone can take this drug, it depends on the Kras status of the tumours.  This is the last drug we can try.  Dr Doom says it will buy me time, but I need a miracle.

Im investigating oncothermia and whether thats an option for me.  It is usually performed in Germany but just a few months ago a Sydney hospital started offering it.  Anyhoo, thats about it for now.  Hoping to be able to post a more positive update next time!!! 

October 2013 its back

Hi, just realised I havent blogged in ages so heres what the last few months have been like for us.  Firstly, we had a great holiday in the camper trailer.  All the way up to Bowen, then back down the Birdsville track.  If theres a few photos in this paragraph then yay for me, Ive worked out how to do it!  If not, well you will have to use your imagination. 

Our trip started with a call out to the RAA just one street away when the caravan somehow blew the car electrics.  'Big Blue' (the big blue toyota) towed us perfectly the rest of the way despite being mistreated.  A car wash at Airlie Beach revealed a completely different coloured car.   Our poor 'outback' camper turned out not to be very outbacky at all.  The brake lines were smashed by rocks, one of the cupboard doors bounced off and the kitchen tap snapped. And of course everything filled with dust, but that was part of the adventure!  

Then had a visit from the lovely Gnomes, and a surprise birthday party for me... yep they got me good! 


Now we are back and the last scan was pretty crap.  I have 20+ tumours in my lungs and there is a 1cm tumour back in my liver.  Dr Doom is suprised that its not showing in my peritoneum although there is an enlarged lymph node there.  This goose if officially cooked according to Dr Doom but Ive proved him wrong.  I am too stubborn to give up, although I have had my moments.  Ironically the original source of my cancer, the colon, is completely clear.   I had my chest port put in on Tuesday, and then went straight to chemo on Wednesday which to be honest, was a bit too much all in one go.  This chemo is nasty, Ive been in bed for the whole three days and am wondering how I will handle six months of it!  Im back to carrying around the portable chemo pump for three days. It comes off in 2 hours, and counting down!  Cannot wait.  Thats one treatment down, 11 to go.  Once again thanking all my fab friends and family for their support.  By the way, this blog has had over 15,000 page views.  How the hell did that happen you crazy stalkers!! lol

Uh oh

So Ive had my scan and the results are...

Colon, peritoneum and liver are clear

BUT (and its a big but)

Its now in my lungs :-(. The biggest tumour is 0.9 cm but it shows signs of necrosis in the middle (die bastard die).  There are tumours in every section of both lungs, as small as 1mm.  So I need to get rid of these shitty little things so I can go on to live a splendiferous life.  We are about to go camping for 7 glorious weeks, aaaah the freedom!  Fischer family on tour! Just like the partidge family only less musical - but just as groovy lol.

I expect to come back to a big six month round of FOLFIRI chemo.  Will have another port put in, the tube straight into the heart so the chemo gets diluted as soon as it enters the body.  Its not as bad as it sounds going in, its not fun but is quite painless.  So back to full days of chemo then 48 hours on a portable chemo pump at home, plus all the hassles of keeping it dry and having it dressed fortnightly at the hospital.  If Im really lucky ( no, thats not sarcasm) they will stick a big needle into my chest and cook the tumours from inside.  So this better be a bloody good holiday!!  Not happy about it, but its what I gotta do.

I had a coaching call with a guy from the USA who talked me through how he beat cancer.  To my surprise it didnt involve either Haighs Chocolate OR iced coffee! More juicing, juicing and juicing...to overdose on good nutrients.  So the juicer will be coming away with us.  And Dont fall off your chair but Ive been going to the gym.  Yes, ME!

We are going to get a cheap metal detector and try our luck on the goldfields and the beaches.  The kids will love it, especially if its too cold to swim.  Hope to spend some time at Airlie Beach where its 23 degrees instead of our 13.  Come join us!

Note to would be burglars: dont worry about the monitored alarm, its the viscious housesitters I would be concerned about!