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

Roller coaster continues

Hi! Its been a busy but happy week !!! After dismal news from the fill-in oncologist, dr Doom said I have a 'pristine peritoneum' (not to be confused with a similar sounding body part). It means that there is no sign yet of the cancer spreading to my stomach lining. My cancer markers are up again from 2.7 to 5.6 to 5.9. He said it could be the cancer is too small to see yet,in which case it will show itself over time. Or it could be inflammation elsewhere. So its really good news!!!! No need to go to that nasty Folfiri chemo yet. Also my dear friend is pregnant, and I went to the dentist expecting yucky dentist stuff and didnt need anything done. Good things come in threes and its been an awesome week! Im so happy :-). Thanks to all our friends and family for your support, especially Mum for surprising me with a visit to come to my scan with me. Im so lucky to have fab family and friends ;-)

I forgot to add that my husband is super handsome and can walk on water.....now please untie me Andrew!

4 july 2012

Im feeling good on the xeloda and enjoying having the kids home for the holidays. Had chemo today, not good news. My cea (cancer markers) have gone up suddenly to 5.9. Anything under 3 is normal. Its a shame as ive been feeling really strong. doc says the likelihood is that it has started to form a tumour/s in the peritoneal area which means all over red rover. He said I can choose whether to see how it goes, or have a scan now to see what they can pick up and they might put me on the folfiri chemo regime. He's asking me this? Excuse me while I go and get a degree or two in oncology! Im still fighting so I said yes to the scan so I can start on folfiri straight away. Folfiri is the last treatment option for me, i never thought it would get to this. But theres still a chance the scan will show up nothing so please keep your little toes crossed for us. My family have been absolutely awesome, love them heaps. Friends too have jumped in to help. I know its not an easy thing to do, its hard to know what to say to someone in our situation...just know that we appreciate it more than you can know! In the meantime Im gearing up for the city to bay funrun on 16 sept. We are raising funds for the Lisa Fahey foundation - feels good to be helping someone else for a change! Look out for us, our team hats have chickens on them so we should be easy to spot. i'll be shuffling the 3 kms most likely with my chook hat on. Cluck!

Crazy fingers

Hi! Not much new to report other than I am handling the new chemo routine really well, touch wood! i get tired and seem to need 12 hours sleep a night but thats ok. Ive started to notice my hair thinning but that doesnt mean I will lose it all so Im not bothered. Am starting to work through my list of thing to do before Im 45. They range from takimg Mum with us to Pompeii, England and France and travelling the east coast in our caravan, to growing a bumper crop of zucchinis this year. And lots of other things in between. We are taking the kids to Queensland in a couple of weeks to visit some good friends, and of course pop in to movie world. The kids are so excited and so am I! It makes a nice break from the three weekly chemo routine. So in lieu of any having any further gripping news to report, here are the top things that bug me about neouropathy (nerve damage to fingers and toes cased by chemo): 1. Need to check my feet more often otherwise I dont notice my nails need trimming. Last time I wore sandals witbout socks people ran screaming from my presence. 2. I cant find anything at night - especially light switches, and Ive knocked over countless glasses of water. 3. Reaching into the popcorn box at the movies. Is there something in my hand or not? Try to eat it in case there is, look like a total idiot then spill popcorn everywhere. 4. Trying to grab anything passed from the back seat of the car...imposssible! 5. Typing - aaaargh! From 80 words/minute to 8 lines/hour. Incredibly frustrating. 6. Is there something in my jeans pocket? Keep going through the motion of reaching in and grabbing until my hand comes out empty. Nearly blew my nose on a five dollar note the other day! 7. And finally, nose picking is an unhygienic and potentially dangerous past time lol! (made that one up of course)

The marker watch begins!

Im back on chemo now, its a three weekly cycle. You might not know that everyone produces cancer cells but in healthy people the immune system polishes them off straight away. The cancer cells release a type of protein into the blood (cea) that can be measured. This is called a 'marker' test. A result of 3 or less is normal. Last time my result was 1.1 and this time its 1.3. So its all good so far! Dr Doom predicts that at some point my markers will start creeping up until my clogs pop off in a couple of years. He has only ever had one person who returned a nil evidence of disease result and was cured. So Im planning on being number two! Moral of the story is.. Dont get cancer in the first place, It really sucks! get a colonoscopy people!

April update

A quick update for anyone checking in to see how we are doing. Andrews Dad passed away so it has been a sad time. Easter was lovely as they delayed my chemo. My first day of the new chemo was yesterday and so far so good. Im on xeloda which is a tablet form of the IV chemo I was on before. i take it for two weeks, then get a week off. Every third week I go back in to the day oncology centre for an infusion of Avastin and have a blood test a couple of days before to make sure my body is handling it. They also check my cancer markers.

After the last surgery my markers went right down to 1.1 which is within normal ranges. For a minute there I was ecstatic, but he quickly explained that the cancer in my abdomen is still in cellular form - it hasnt had time to develop into tumours yet. There is a procedure called Hipec that could help, but Im not eligible. It involves pulling out your insides and washing them with chemo (sounds yuck.) Unfortunately my insides are all stuck together with scar tissue from the previous surgeries. He said there is still a very small chance the chemo could work, even though its typically a maintenance program. Im on a fairly strong dose. Only way to tell will be to keep watching those cancer marker results. I cant describe how nervewracking it is waiting for results that will tell you if you will live or die. But at the moment I feel good and will take it one day at a time until Im better! I told my Oncologist its their fault Im in this position because ive been pushing them for twelve months to take out that tumour, so now its his responsibility to fix it! Im not scared to speak my mind with him now, what have I got to lose!! :-)

The clogs are coming loose :-(

Andrew came to visit me in hospital on his way home from work. Dr Head Oncologist popped in. He said that the cancer has spread to the peritoneal cavity and there is no cure. Previously he had given me a life expectancy of two years. That was one year ago and before my successful liver resection. Things had finally started looking up.

Andrew and I had a good cry, we are devastated. This isnt how it is supposed to go! I cant comprehend the kids growing up without me. Im not giving up but suddenly reality has thrashed us about the head.

This isnt fair - on my hubby, the kidz, mum, my sisters... If I had known this was in my future I would never have gotten married. Noone should have to go through this. Im pissed off but mostly just overwhelmingly sad. I will not give up, I will fight for every extra day with my loved ones.

So today I will give myself permission to cry and wallow. Tomorrow somehow I will get it together and keep fighting. I will never, ever give up.

Not so good...

Had my surgery yesterday and Doc has just left. The tumour had attached itself to various other parts and had been bleeding. Thats why I had been in so much pain and had low blood pressure. Its certainly not what I wanted to hear. The bleeding could be full of cancer cells and essentially 'seeded' my entire abdomen. And because the tumour was stuck, he couldnt get it all out. Im devastated, but give me aa few days to calm down and I will be back in fighting mode. I already started talking to Doc about whats next ...he said get over this op and we will talk about it. At least I have my own room, so happy bout that!

Latest update

Im home, but going back in on 5 March for what will hopefully be my last surgery for a very long time. This op will be to remove both ovaries, or perhaps a full hysterectomy depending on what they find. I dont mind, so long as I dont turn into a menopausal monster! And my tummy should be nice and flat after this. Good news is that last weeks scan didnt reveal any nasty new surprises. Bye for now,
Jen

Omg Im still in hospital and this woman is still snoring. Then she wakes up and complains that she hasnt slept and the rest of us roll our eyes! If i accidentally smother while sleepwalking am i legally responsible?
The tumour in my ovary has grown and the think it may be necrotic, doesnt that sound lovely? I was not overjoyed. It would be reasonable to assume they would take it out, but no. They dont do complicated surgery here and dr ovary said to get my pain under control and send me back to him. Please can this all be cured - now!

My neighbour is evil

Im back in hospital and the old lady in the bed next to me is pure evil. She snores in a way ive never heard before, the whole ward is sleep deprived. I had $2 on my bedside table for the paper and she just took it! Get me outta here!

Catching a break!

Hiya, just a quick update for family & friends...

MY MARGINS WERE CLEAR!

Yep, thats a big yippee!

I will only be yippeeing for a little while, Im already looking at another surgery in March and then back on to the dreaded chemo.  We are still playing the eternal waiting game to see if the 'indeterminants' in my ovary and liver are cysts or tumours, should have a better idea after my next catscan.  Please let them be cysts, Ive had about as much as I can take.  Since Ive been home Ive managed to get pleurisy, tonsilitis and gastro...so Ive been taking it easy and keeping away from you germy lot while my immune system reboots.  Im feeling much better now and am looking forward to catching up with everyone soon,  After the next surgery I should be well set up with my own portable noughts a and crosses game set up on my tummy, ready to play at any time lol !!   #

Still recovering at home, waiting to see when the next round of drs visits will start and, more importantly, what news they will bring. Today i noticed that my hands arent yellow, and actually have a touch of pink! I was very happy about that! Still got quite a bit of pain but thats to be expected with such a big operation. Now i have Izzy at home sick too, so I hope she is feeling better by morning. Thank goodness a cool change is on its way, the kids have been going nuts stuck inside! Have been feeling sad over the last few days over the death of Kristian Anderson. Ive been following his blog and it very tragic. It feels selfish to wish for a different outcome for myself.