Sunday, 24 August 2014

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!!

Tuesday, 22 July 2014

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! 

Sunday, 11 May 2014


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?

Monday, 5 May 2014


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.

Friday, 28 March 2014

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 as Tom would say, later dudes!

Tuesday, 28 January 2014

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!!!