Hello this is Andrew I am Jen's husband and it I with devastating sadness I must let you all know that despite putting up one hell of a fight Jen left us in late May.

Rest in peace my love.

Whats up - March 30 2016

Hi, its scanxiety time again.  Am not expecting good news as my breathing has become laboured, and the ventolin doesnt relieve it any more.  My tumour markers are down though, from high 40's to 41.  So I get a week to be drug free apart from antibiotics.  The scan will show if my difficulty breathing is caused by a chest infection, the Stivarga (chemo drug) or the cancer.   Im ready for this to all go away now, Ive had enough!!!  Im still submitting requests for a successful clinical trial on the Whitsundays.  Am accepting all good vibes that come my way to help get through this week!

jan 2015 update

Hello luverly people of internet land!  I am very happy to be posting today!  In March 2011 I was given 12-18 months to live.  Then in October 2014 I was sitting in my chemo chair receiving treatment, waiting for my oncologist to pop out and see me.  He would usually say my bloods were ok and all good to continue.  This time the nurse said he had told her to stop the treatment and I had to see him in his room.  I got teary straight away as I knew what this meant.  The chemo had stopped working.  Shit.  He said I had about 3 months, that would take me to around Christmas time.  I wouldnt see my daughter start high school.  Double shit.  The thing that worried me most was how would the kids get home from school!   The nurses took me into a quiet room and one by one they came in to say goodbye.  They hugged me and cried.  I cried.  It was a regular sook fest.  One of the nurses asked me about palliative care.   I said no thanks, I wont be needing that.  She said she isnt allowed to talk to me about that sort of thing.  How ridiculous.

My oncologist started me on a drug called Stivarga.  Its not on the PBS and he stresses that it isnt a cure.  My last scan showed no new tumour growth and some tumours have started to liquify from the inside, zombie style.  Todays tumour markers showe they are down to 23, they were 77 last month.
I'll take that!  The medication makes me really sick but compared to the other side effect thats no problem.  Woohoo!  

aug 2015

Its scanxiety time !
I am having a catscan tomorrow, cant have an MRI because Im full of staples!  The pain in the back of my shoulder and chest has improved, which is a good sign, but my breathing continues to be a problem.  I have no desire to slowly drown in my own lungs, funny about that!  Usually I take my scan results with me and in a very unsubtle manner, I rip them open in the car and end up having a good old howl.  I go to see Dr Doom a few days later and I ask him to put a positive spin on it.  He is yet to find me a cure based in the Whitsundays.  Clearly my current method isnt working so well for me, so this time Im not going to open it and wait for the appointment.  Who knows, maybe mixing it up a bit will help!  Have lost two of my chemo friends last month, it was still a shock which must sound strange.  On the good news front, my hair is back yaay!  I cant stop touching it, its so healthy!  And grey... But lucky for me I dont care about that so Im not going to dye it.  Hair is growing on my arms and legs again dammit!  Will have to get out the hedge trimmer before summer comes.  Depending on the tomorrows results I may change treatment.  I hope to stay on the one Im on as the next treatment is the last one I can have, it only buys some extra time.   I chucked a sickie at chemo last month, had an extra week off and it was awesome!!

July 2014 update

Hi Folks!  I haven't blogged since May, so thought I would give a quick update.  I haven't been rescanned yet, I think Im due again in about eight weeks time. Scanxiety will set in again shortly!  I am back on the chemo drug oxaliplatin, to which I have developed an intolerance.  My oncologist is desensitising me to it, which means dosing me up on antihistamines and giving the drug very slowly over 7 hours.  Unfortunately I found out about the allergy as I was driving home from my first dose, resulting in an ambulance trip.  So its oxaliplatin followed by two weeks of chemo in tablet form, then one week off and start over again.  Oxali is the first chemo drug I was on, and I achieved a 40% shrinkage in tumour size.  So fingers crossed it will still work for me.   I am feeling very fatigued in the first two weeks of my chemo cycle. The first week I find it difficult to get out of bed.  Second week I sleep until lunchtime. But the third week I feel great.  When I say great, I feel normal.... which IS great!  Never underestimate the awesomeness of feeling normal.  Its something we take for granted until we lose it!   My tumour markers are now up to 30 (less than 3 is normal) and for the first time I feel the cancer, not just the chemo.  I am short of breath and ache in the back of my shoulders, which is the cancer in my lungs.  Please can this chemo shrink them down! 

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!  

May update

Ahoy thar my lubblies in blog land!  

This month my cea markers have risen to 4.8.  Its never good to see them rise, but they are notoriously untrustworthy from all I have read so I choose not to be bothered by this.

What I am bothered about is the pet scan that Dr Doom has scheduled for July.  This is the scan where they inject a dye and I go in the big MRI machine.  All the while it bangs away like Homer Simpson is conducting maintenance on it at the same time.  The dye highlights any cancer cells.  Last time my peritoneum was 'pristine'...please let it be the same again.  So from now until then I am cncentrating on positive thoughts and trying not to panic.  Easier said than done when deep down Im terrified and screaming.

Anyhoo, to perk myself up I just made a cancer fighting smoothie  concoction with frozen banana and rasberries, rice milk, zucchini and fractionated fruit pectin (read about it here if it interests you and you can be bothered).

http://www.prnewswire.com/news-releases/dr-isaac-eliaz-awarded-patent-for-modified-citrus-pectin-and-alginates-205361071.html

And yes, it really was yummy.  Its amazing what fresh vegies you can disguise with frozen bananas. This recipe is a great way to use up soft bananas and increase the amount of raw vegies in the diet.  

 Dare you to try it!

all good!

hi! just  had my  colonoscopy yesterday and the results were .......drumroll please.........all clear! 

and my cea  markers are  still stable at 3.8.  

very happy girl today!  

March results:  CEA 3.7

Just saying..........woohoooo!

Nice and stable for three months now!!!    Now back on to chemo for the next two weeks.  Have started the process of getting the kids genetically tested.  I will be devastated if I have passed on the gene, but if we know we can make sure they never get it.  Bowel cancer both sucks and blows at  same time.  Not good.

By the way, dont you think the new state logo looks like a bad origami experiment?  Just throwing that one out there lol

Hi my lovelies,

You might remember I didnt get my cancer marker results before Christmas as I didnt want to spoil the day, well.......

Today I found out that the mystery pain in my side is just scar tissue and in January my markers were 3.9.  Was that a typo I hear you say? (or not).  Hell no!!  Wow, thats the lowest yet! Dear readers you may recall that under 3 is considered normal.  We all produce cancer cells but the immune system mops them up.


And then....

Wait or it.........

My markers today (valentines day) were 3.8 !!!!!!!! 

Of course Dr Doom pointed out they can jump up at any time but today Im celebrating a good result.  Its one foot in front of the other kinda stuff.  
So yippee!!!

Happy Valentines Day !!

Curses and damn you Farmers Union

Hi!

Not a lot to update, my cancer markers are still stable ( touch wood ) and Ive been so busy I really wonder how I ever went to work!  It doesnt help that I sleep in. I have set four alarms and slept through every one of them so I officially give up on trying to get up before 10.30.  This week I shocked myself and woke up at 2.30, just in time to pick the kids up from school! 

Im starting to go to the gym for cancer patients in a couple of weeks, that should be interesting.  At least they understand the limitations as my feet can be quite a nuisance.  Sometimes they bleed but depending on where its coming from, I might not feel it.  Ive been known to leave a blood trail around the house which really annoys me because we have white tiles and I hate mopping! I mean really, who puts down white tiles??!  Must have been someone with an OCD mopping disorder!

After a major hiatus I am back on my anti cancer diet, which means no wheat, dairy, alcohol or sugar.   Also known as the no fun diet! I did it for a full 12 months but when I lost 20 kilos after the last surgery I went off it .  Of course I put back on 25kgs!!! Did you know garlic is a cancer fighting food? Tonight I had a raw salad with bean shoots, broccoli, zucchini, home grown organic tomato, a boiled egg for protein and a whole garlic clove in the dressing.  Believe me, my hubby is VERY aware of the garlic - no kisses for me!!  i have to get organised and plan my meals in advance.  So im outing myself as being back on the diet so I have some sense of accountability and hopefully some extra discipline. Im having major sugar cravings, waah I want an iced coffee!! No one, and i mean no one, is allowed to drink iced coffee in front of me as I may crash tackle you to the ground and rob you.  I was following a farmers union truck today and I thought damn you, you tempting truckload of sugary caffeine loaded goodness! Over and out my little bloggy friends lol

Good news everyone!

Just shouting from the rooftops......have just had two weeks off chemo because of a nasty virus, so I was really nervous about getting my tumour marker results....and they have gone DOWN !!!!  From 5.5 to 4.2.  Now remember kiddies, if you have been paying attention in our cancer 101 classes, a result of under 3 is normal.  Fingers crossed it keeps going down!!!!   Yaaaaaaahooooo I love any bit of good news :-)

Plodding along

Hi everyone, I havnt blogged for a while - im going along really well!  Still on chemo but they might give me a break soon as my feet are copping it a bit.  Hand foot syndrome is where the chemo leaks out the capilliaries and burns from the inside out.  So that bit isnt much fun.  My cancer markers are still elevated but stable  - they have gone from 5.9 to 4.9 and now back up to 5.5. (normal is less than 3, they were around 50 before my first surgery).  In the meantime we have been kept busy with school hols, relatives in hospital, even the cat is getting in on the act with a stint in kitty hospital after a snakebite! 
 So thats it, no more trips to hospital this year please!  

Really, do I have pleurisy AGAIN? 


Dear God/ Supreme Being,
I would like to exchange my Jen Model 1 for a newer version.  I realise this model is out of warranty.  It was constructed in line with the instructions and was delivered in good working order, but appears to have serious and inherent design flaws.  At present the air intake and rear exhaust systems are severely compromised.  Im not sure if your support desk is staffed, but if you could get back to me as soon as possible it would be much appreciated.  xx