And then....

Ive got pleurisy to add to the fun times. Hopefully the antibiotics will kick in quickly, it hurts to breathe. Need to start getting better, dont want to go backwards.

Oops

Back in hospital waiting for an angiogram to see if i have a blood clot. Hopefully its just a dose of overcautiousness!

Post Surgery Update

Hi everyone!  Its been nine days since my surgery  and Im now home.  By all accounts everything went well.  Dr Liver removed 6 tumours, not four - there were two hiding behind the bigger ones.  Good news is that he managed to take them all out!  Now the waiting continues for the pathology results to find out if the margins were clear, and if the 'indeterminants' were cysts or tumours.  Also waiting to see what the next stage of treatment will be - more chemo and another surgery to remove then ovary most likely.

Missing out on Christmas was a bit of a bugger, but didnt really bother me that much.  I had some very special visitors who really made my day!

Heres the bit where I have a whinge. Be nice to your liver this new years eve, because liver surgery is the most painful thing Ive ever experienced.  I gave birth without painkillers so I like to think I have a reasonable pain threshold.  It really was agony.  I had an epidural before the surgery for pain relief but that wore off by about 3pm the next day.  The morphine was slowing down my breathing to the point where the nurse was watching me sleep.  I was only taking in five shallow breaths per minute, so she would rouse me every couple of minutes to get me going again.  Then they would tell me I wasnt pressing the morphine button enough - it was all very confusing.  Im still on morphine at home, and not very mobile at the moment.  But Im getting a little bit better every day and thats the main thing! 

Thanks once again for all the good wishes, it really does mean a lot to our whole family.  There are a lot of people who I know will be happy to say goodbye to 2011, so bring on 2012 and a happy new year to everyone!

By the way, if you are silly enough to be following my blog then Im silly enough to show you my scar!  Its a beauty!  I think Dr Liver did a great job.

Game on!

Its been no, but yes, but no, but YES!!!  The surgery is on!  It is scheduld for 20 December, so it will be hospital food for Christmas Im afraid.   The kids were concerned that Christmas would be cancellled, but they are happy now that they know Santa is still coming lol!  Happy Christmas everyone, look forward to catching up in the new year with my new liver - enjoy a champers for me! 
:-)

Good news!!

I went to see Dr Liver on Wednesday.  I wasnt nervous about it, in fact I barely gave it a second thought as I was confident he wouldnt be able to operate.  Dr Liver studied my films and called me over to show me the tumours.  'This one could be a cyst' he said... followed by 'I dont see any reason why I can't resect it'.  I had to pick my jaw up off the floor!  I was seriously shocked but in a good way this time!  He said he wont know until he opens me up whether he can resect it all.  He might have to leave one tumour behind but they can do radio frequency ablation while they are fiddling about in there. And the suspicious ovary can come out as well.  Might just book some liposuction while Im there, may as well get the works!  After the surgery I will need more chemo to mop up any stray cells. 

I have to have an MRI next week, then a follow up appointment with Dr Liver the week after - so am keeping everything crossed that nothing changes between now and then.  I hate to be pessimistic, but I still dont believe it is going to happen.  I wonder if it will be before Christmas?  Better get my chrissie shopping done.  It will be a big surgery, but it will drastically improve my chances  so bring it on!  :-)

And in a final whinge about Super SAs income protection insurance, after paying me once in nine months they have finally managed to start regular payments - quite possibly the worst service ever!

waiting, waiting, more waiting....

Howdy!  Heres my results update.  The tumours have continued to shrink, but had nowhere near the results I achieved in the first three months as was expected.  The biggest tumour in my liver has gone from 4.3 to 2.6 and now 2.1cm.  The smallest one is now 1.1cm and the other two are just over 2cm.  So thats around a  50% reduction after six months of chemo.  So close, but still off target -  I need that smallest one to melt away completely to leave a third of my liver cancer free so they can chuck the other two thirds away.  

Dr Lady Bits is actually Dr Nice Guy (if we could only transplant his personality into Dr Handsome with his lovely accent - the world needs that master race of Drs hehe).   Dr Nice isnt sure Ive even got a tumour in my ovary because the 'mass' has shrunk so much - that was a shock!  They cant biopsy it to find out because if it is a cancer as it would have the effect of spreading cancer seeds throughout my abdomen.  He doesnt want to take it out just now because of the risk of complications from my earlier surgery.  He is going to talk to Dr Head Onc to decide on a course of action.  My response was that Im still aiming for a liver resection no matter how unlikely they consider the possibility, so they can just take the whole lot out in one go.  So now Im waiting here - feeling great thanks to no chemo, but on no treatment and with no plan.  I hate having no plan! 

In the meantime Ive have had a fabulous week, feeling great and caught up with heaps of friends during the week.  Really enjoyed seeing everyone.  Im still keeping up with my diet despite a few recent lapses and have become addicted to my yoga classes.  My legs are still aching from last Fridays session.  Warrior 2 - I hate you!   Anyhoo, must sign off - Izzy is desperate to show me her stamp collection and Tom wants to tell me 'something', which is code for 'I need attention'!!

Clogging and Blogging!

Hiya, here's another quick update on whats happening with me and my cancer battle... I should really say OUR cancer battle as it effects the whole family. 

Yaay, Ive survived 6 months of chemotherapy! Insert flagrant happy dancing.  I dont mean that sarcastically, cos the chinese lady next to me at chemo had liver complications from the drugs and died.  So I really mean yaay and woohoo, so glad to be finished.  Dont think my body could have handled much more so it was a good time to finish.  Not tied to the hospital for a while and feeling great (calling all social invitations!) and no more picc line for summer.  I can have a bath without looking like Im trying to flag down a lifesaver!  Thanks Mum for looking after us all.  We miss you, but I bet you dont miss the housework. 

I have another scan next week, then see 'Dr Womens Bits' and he will book me in to have my ovary removed - or a full hysterectomy, wont know until he goes in.  The surgery should be in 2-3 weeks.   Im not fussed as I dont need those bits any more.  And after the last surgery, this one should be a walk in the park (touch wood, I dont want to jinx myself!).

I am going to change Dr Head Oncs name to Dr Doom - he is not very positive.  Great hair, but that doesnt make up for the stuff that comes out his mouth! He has given me a use by date which I choose to ignore and not to share - I dont want y'all doing a count down and ringing me up to see if Im still clogging around that time!!  He said he's in two minds about whether to take me off all medication and just see how I go (duh, the tumours will grow again) which sent me for a six.  It will depend on my catscan and pathology results - if they can operate on my liver he will keep me on meds but considers this to be unlikely.  When I told my naturopath, she said his words were unnecessary and cruel - and I agree.  I will try and use them to inspire me to prove him wrong.   If I cant be cured then I can be treated as having a long term chronic disease and I would be happy with that. 

If he decides to take me off them I will find another Dr, as I dont consider that an option  In the meantime Ive contacted St Vincents Hospital in Melbourne to see if Im eligible for the same trial that Jim Stynes is on.  Its a drug that boosts the immune system which is a new way of treating cancer.  Instead of the chemo approach where they aim to knock out the cancer cells, this treatment boosts the Tcells and lymphocytes to ramp up the bodies own immune system so they can take out the little buggers.  Its the approach Im taking with the naturopath, trying to support my immune system.  Will be interesting to see what they say. 

So thats it for now.  In the meantime life goes on - lots of birthday parties this month, Andrew is growing a mo for Movember, the weather is warming up and the kids are growing like weeds.  Enjoy the nice weather! Jen

Another milestone

Hiya, well today is my last IV chemo so on Friday the picc line in my arm can come out. Yaay! I can have a bath without having to wave one arm in the air like Im waiting for a lifesaver to come rescue me from the tub! After this I go on xeloda which is still chemo but in a tablet form. I still have to have avastin fortnightly through the drip but it only takes half an hour, which is much better than the current six. Cant wait to be finished. Getting rescanned in the next couple of weeks,its completely nervewracking. Apart from the chemo I feel great! No pain or other symptoms. still cant believe I have this insidious disease but working hard to beat it. Get the hell outta my body! Its mine and you cant have it!

Dr Liver Guy said my chemo results have been amazing, but not enough for a resection. I go back for a review in December. He reckons the chemo works best in the first three months so I dont expect he will change his mind, but if he does it will be the best surprise. I still have sirspheres to fall back on, when the tumours start to grow instead of shrink thats when they will hit them. Bowel cancer is a bummer lol!

Liver resection - maybe!

Ahoy-hoy!  I went back and saw my original surgeon, aka Dr Handsome.  He is still dashingly handsome and that accent... well I cant say its to die for (lol, black humour!) but Im a sucker for the Irish and Scottish lilt.  So once I got over the visual aspect, he said its worth referring me back to Dr Liver Guy. He is the one who said he couldnt operate unless I had an AMAZING result from the chemo.  And I must have that operation to have any chance of a cure and/or longer term outlook.  And now Im being referred back to him!   (insert double back flips).  Dr Head Onc said not to get too excited as he seems to think he wont be able to operate, but its a step in the right direction.  Looks like the hysterectomy will be in early December.

I had a few slips in my diet this week, it started with one slice of birthday cake on my birthday...quite justified I thought.. but I seem to have extended the celebrations to include a vanilla slice and sugar coated nuts as well.  Ooops.  Will read my anti cancer diet books before bed tonight to get more motivated so I can maintain the strict diet from here on.  Plus my naturopath always knows.  I dont know how, but she has sugar radar. Its spooky.

And I must also thank Tania, Helen, Rachel and all the girls for the 'shop til ya drop' night.  We had a blast and the cool clothes were just an added bonus. Tania and Helen have been running a cancer fund raiser for the last ten years or so.  You guys rock!

Til next time, stay healthy and happy!

Cautiously counting chooks...

We have just arrived home from a lovely dinner with three other couples. Each person at tonights table holds a special place in our hearts. The first couple introduced me to my husband, the others joined us overseas for part of our honeymoon. And tonight they proudly presented us with the proceeds of the quiz night they organised to help us out. With the help of their families and friends they ran a fantastic evening and even though our table didnt win (insert desperate sobs), a great night was had by all. So thankyou Ben, Anita, Andrea, Simon, Nicole, Nigel and everyone who helped on the night, and to everyone who attended or donated items for the auction. There are just too many people to thank! We are truly grateful.

This weekend I didnt have cancer, I had cheescake instead! Izzy had a sleepover so i decided to lose myself in naughty food. Dont tell my naturopath but it was gooooood! Now its back to the organic diet. I just really needed a treat! Theres only so much carrot and beetroot juice a girl can take. Only four more chemo treatments to go, i cant wait for it to be over. The side effects are increasing. Neuropathy is effecting my mouth, fingers and nose. The nausea and tiredness are taking longer to wear off and i had my first mouth ulcer. On a brighter note I havent had any more (touch wood) and the nose bleeds have stopped. In all I think Im handling it ok. Dr Big Onc seems 'cautiously positive' given my good result from the chemo so far, but reminded me not to count my proverbial chooks. I reminded him that Im aiming for a liver resection and that magic final note on my file that reads 'NED' - nil evidence of disease. He smiled. Cautiously of course.

Have a good one, wherever you are!

Woohoo!!!!!!!

Hiya!
I had another catscan today, then straight up to oncology and another chemo sesion. Am back on the chemo pump til Thursday. I saw Big Chief Onc (BCO - nicknames amuse my small mind) instead of Dr Dimwit, what a blessed relief. Its never good to think you know more than your specialist. Im changing hospitals next week where I hope my faith in the medical profession will be restored. If I have to have my insides rearranged again I think Id like to choose who does it this time. Anyway, no more whingeing cos its a good day. No, its most excellent day!

My largest tumour in the liver has gone from 3.9 to 2.6cms. Thats a reduction of 40%, rounded up by 1% cos im an optimist! (insert happy dance). It might not be the miracle im looking for..yet, but i am grateful for every small win. BCO even smiled at me for the first time and he is a massive pessimist. He said there is a small chance i might be able to have a resection, so its still game on! Got two more months of full on chemo, then a hysterectomy, then they will probably put me on maintenance chemo until the tumours start growing again. Then they will hit them with the sir spheres.

So the plan is kinda on track, so keep everything crossed for me that the chemo works amazingly over the next eight weeks!!! Hopefully i will be off chemo in Nov/Dec so we can pack up the camper trailer and head north for a month..or east, or south, or west....!

Sunshine and light

Hi there everyone in blog-land!  Heres another update on how things are going.  I started this blog sending the link out to about eight close friends because it was so hard on Andrew having to repeat to everyone how things are going - but somehow its got bigger than that.  I have had some lovely emails from other cancer patients who have found it inspirational which is great, but I thought perhaps I should balance it out with a dose of reality - its not all sunshine and light.  Everyone has their down days and Ive had a really down week this week.

The good news is:

• My bloods came back all ok again, white cells are good, red cells are even up, and liver function is ok.
• The pain in my side turned out to be muscular, who knew I had muscles in my abdomen! So theres one less thing to obsess about.
• Dr Dimwit didnt know anything about sirspheres, even though my hospital is an accredited provider.  So I rang Sirtex and they told me who he has to refer me to - within the hospitals own radiology department of course.  So I dont have to have the spheres in Sydney which makes it a lot cheaper, and also my private health might cover some of it.  So with the quiz night and the Ellabella Prints auction I should have enough money to pay for the treatment.  Thankyou so much to my wonderful friends for supporting us in this way and for all the lovely meals, helping to take the pressure off.
• The quiz night is set for August 13th!!!  I can't work out how to attach the invite to my blog  but if you are interested in coming, drop me an email and I'll send on the invitation.  Someone told me not to put the @ sign in my address to avoid being spammed, so its jfischer at kern.com.au - replace the 'at' with '@'.  Im sure you get it!

The soso news is:

• My CEA cancer markers were tested for the 2nd time so they can be compared - originally they were 42, and they have stayed at 42.    CEA is a protein that cancer cells release into the blood, the higher the result the more active the cancer.  I was devastated that they hadnt gone down and burst into tears, but the Dr reassured me that without the chemo they would have been three times as high, and it shows that the chemo is holding the cancer at bay... there is still time for the numbers to drop.  Wont know whats really going on until I get rescanned in a month.  I need a miraculous result from this chemo so will keep going with my healthy diet, juicing and supplements. I lashed out on a piece of carrot cake this week, yummo- have been dreaming about iced coffee and vanilla slices!

And the bad news is:

• Tests showed that I dont have the KRAS gene mutation so Erbitux wont work for me.  I was pinning a lot of hope on this drug as it has had such positive outcomes, so yet again more tears for me.  Spent the whole day in chemo being a big fat sook.  Actually Im a skinny sook now, woohoo!

I didnt do much to help myself I have to say.  On the way back to the car I walked past a jewellry shop with a half price sale and bought Izzy a necklace for her 21st in case Im not here to give it to her.  How do you write a letter saying goodbye to your kids?  If you can imagine it then you are part way to understanding what a bad day is like.  Dont get me wrong, I am just as determined to beat this as ever.  But a good project planner always has a risk management plan and thats what Im doing.  Just covering all the bases, and when Ive finished writing these letters I can put them away and forget about them - just one more thing to cross off my list.  So Im sorry to be not so inspirational this week, but I think its important that other cancer patients dont think I have some freakish ability to only think positively - my advice to you is dont google survival rates, they are based on averages and we are NOT average!  Thinking positive takes hard work and perseverance.  Only google survivor stories for inspiration and ignore the rest.   End of lecture, over and out!

A quick update....

Wow, iron transfusions are great, everyone should have one!  And it was just in time for a visit from my friend Gnomes from Brissy.  We stayed up til a raging 1am!  Poor Gnomes, she had to suffer through a never ending dance recital but it was great to spend some time with her.  Oh the joys of being an honorary auntie.

Im now on to my fourth chemo cycle and the drugs seem to accumulate with each treatment.  Im coping with it all well, touch wood. Thankfully the iron transfusion has given me loads more energy, but the nausea and neuropathy are worsening and I wake with a blood nose every morning, from the Avastin I think.  Erbitux was approved on the PBS this week, yaaay!  So Im hoping to add that to my bag of tricks.

Ive never been a girly girl who is into hair and makeup.  But now that my hair is thinning Ive developed a sudden affection for it.  I think Im getting a bit obsessive about my hair falling out, its just such a wierd sensation.  It dawned on me the other day that Im half way through the treatments before I get re-scanned.    My mind is starting to shift from managing the chemo to what the actual result will be, and Im getting nervous.   In bed I listen to a self hypnosis CD for cancer patients that targets the sub-conscious with positive messages.  It stops me from having other thoughts.  It works so well that Ive never stayed awake long enough to hear the end!   Im determined to beat this, but what if its unbeatable?  I refuse to think its an option, but I still have my dark moments..I can't help but worry about every pang, twinge and pain - is it the cancer?  I will beat it.  For Izzy and Tom.  For my family.  Because Andrew buys ugly furniture and cant do a ponytail to save himself. 

Don't forget to check out www.facebook.com.au/ellabelllaprint for the online auction that starts on Fri 24 June.  The support from work at home mums has been amazing.  It really restores the faith and I thank each and every person who has contributed.  Massive thanks to Nicole for organising it, in between juggling three small children and the best kids market in Adelaide!  http://www.lollipopmarkets.com.au/.  How does she do it!

Before I sign off, here's an Izzy quote.. 'Don't forget, be happy!'

Introducing Doris....

Hiiya, well I thought it was too good to last - my second session of chemo was two days ago and Im really feeling it.  Nausea and fatigue are not much fun.  So Im officially back on the bottle until later this arvo when I go back in to get 'unhooked' from the chemo pump.  Its a bit disappointing because I was so good last week, but to be expected I guess.  Thank goodness for Mum and Andrew (hubby), both have been working extremely hard during a difficult time. Sometimes I think its easier for me than for them.  Im still losing hair but havent had to bring out my wig yet... we have christened her 'Doris' because she's a bit more Doris Day than Farrah Fawcett as was the original suggestion.  Plus the real Doris is still kicking on and Ms Fawcett's tap got turned off a bit early so thought I'd stick with the more positive name.  I just hope all this chemo is doing its thing and 'lumpatron' is majorly shrinking. 

My chemo is Folfox with Avastin which takes about 5.5 hours to run through the drip.  My blood results came back and liver function and white cell counts are all within normal ranges, but my red blood cells are 'in my boots' and Im very anaemic according to the Dr.  Apparently colon cancer is notorious for slowly bleeding and leaching out all haemoglobin, so my red cell count would have been very low for quite some time.  I thought I was just tired because Im a working mum!  A blood transfusion would fix it temporarily, but an iron transfusion lasts for a month so Im having that done on Monday.  Yet another full day on the drip, but  hopefully it will be the pick-me-up that I need.  I felt so good last week that Im sure this will have me swinging from the chandeliers in no time. 

My good friend Nicole (organiser of the famous Lollipop Markets http://www.lollipopmarkets.com.au/) has organised an facebook auction to help raise funds for my sir sphere treatment.  I didnt get into the trial because of the ovarian cancer but I can still have the treatment if I pay for it.  Here is the address for the auction:  http://www.facebook.com.au/ellabellaprint.  It starts on June 24th so check it out!  It is very overwhelming to have so much support, especially from strangers.  So now I have two awesome Nicole's helping me out!  The other Nicole is arranging a quiz night - she runs http://www.paintnaturally.com.au/ so pop in to see her on Unley Road if you need decorating advice - her range of Florence Broadhurst is amazing and Im sure I don't need to sell you on the benefits of chemical free paint.

Anyway, nothing much else to report this fortnight - hope to be feeling much better and full of energy next week after my transfusion!

ps Andrew has invented 'vertical planking' - its hilarious, but he wont let me take a photo of it!

Planking is an artform

Hi, well my first round of chemotherapy is over..feeling great today! Had a few yuck days last week. I was prepared for nausea but it was manageable. But you can't do anything but give in to fatigue. So while I have been 'planking' in my bed, mum has been Awesome (with a capital a) cooking, cleaning and running around after the kids. The Picc line is not really a bother except I have to be careful with it and wrap my arm in cling film to have a shower. My hair is still falling out but in strands rather than clumps. I think after the next chemotherapy it will be time for a buzz cut, but until then I am shedding more than the dog!

My friend Miss N has got together a band of likely lasses to organize a quiz night to help cover the cost of the sir sphere treatment. Thank you so much to each and everyone who has offered to help, it has been quite overwhelming and I will confess I shed a tear when I heard, just to think that they would do this. It will certainly help take off the pressure, god knows my poor family has had enough of that - it's luck changing time folks! If anyone else would like to help with the quiz night let me know, perhaps you could donate a prize? I suggested a bald theme but for some reason no one else was keen, lol!! I'm back for more chemotherapy on thurs, so keep an eye out for me planking- you just never know where I might turn up!!!

Goodbye hair!

Boo hoo, my hair started falling out today......

Game on!

Hi everyone,
 

Ive finally found a quiet moment to post a quick update for anyone who would like to know where my treatment is up to.  Im not going to talk about how my situation effects my family too much as I think thats personal to them, and if they want to share it then they should choose how that happens.  So yet again its all about moi! 

I will say that Izzy (age 9) had a few good cries in the lead up to my chemo.  I think she expected that my first dose would result in me spewing into a pile of my own hair.  Fortunately it was considerably less dramatic than that!   I actually felt remarkably calm and believe it or not, happy!  Finally I have a game plan and and to this cancer I say 'game on'. First I went in to have my picc line inserted in the top of my arm - this is it!  It stays in for months.

The picc line is inserted into a large vein and is threaded up through the shoulder and comes out just above the heart, where the chemo can be instantly diluted so it does the least damage.  It also saves the veins in my arm from getting scarred. 

From there I went up to the chemo room where the staff and volunteers were fantastic.  There are series of rooms, all with lovely outlooks over the city or parklands.  Each room consists of a semi-circle of ageing plastic recliners, all in various shades of blue green.  They are very comfortable though.  When I first started my five hour stint on the drip every chair was occupied by women of all ages, but I spent the last hour on my own as one by one they snuck out without my noticing.  (I guess my book was better than I thought).   I expected there to be chatting during our long periods of reclining but to my suprise everyone kept to themselves. I have chemo every fortnight so I wonder if it will be the same group of ladies.  Sometimes its good to keep to yourself, but other times a chat can help break up a boring day.  So basically, I just sat there for five hours on the drip and.....nothing happened!  I  didnt feel sick, my hair stayed on my head and I didnt puke!  Now I am at home with my portable pump that looks like a babies bottle, except it is much more sinister and full of very toxic chemicals. This is it....

Chemo is really toxic stuff.  I hope my 'lumpatron' is screaming in agony as it shrinks and dies!  So the ovarian cancer might be a new primary cancer, or it might be a secondary from the original colon cancer. We want it to be a secondary, because then the chemo will shrink it too.  Otherwise it will be completely ineffective.   So far the chemo has given me a bit of nausea that is under control, and some neuropathy.  Anything I touch that is cold feels like freezer burn, and there is a constant metallic taste in the mouth.  A couple of people have been brave enough to ask if I had to have a stoma (bag), and Im happy to report that although I had 45 cm of bowel removed I didnt need one, for which I am very grateful, and everything is back to normal.  So the game plan as far as Im concerned is:

• Three months of chemo
• Get rescanned, find out the chemo worked amazingly well and everything is substantially shrunk and some tumours are even gone
• Surgery to remove the ovary
• Three more months of chemo
• Sir spheres direct into the liver
• Get rescanned, find out the liver mets are clear on one side of my liver and the rest are operable
• Shock the pants of Dr D who then has to eat his words and give me a liver resection
• Dr Handsome will have fallen madly in love with me by that time, but of course despite his fantastic accent I will spurn his attentions for my fantastic husband, lol!
• When I get the all clear, we will celebrate by opening one of our special bottles of wine with our favourite friends. 

I found a couple of quotes that have inspired me this week.  The first is from a mesothelioma patient and statistician who was expected to live for 8 months but survived for 20 years. He said that 'variation from the median is the new reality'.  The second quote 'see the doughnut, not the hole' is from that other great philosopher Homer Simpson ;-)

I couldnt finish up without a few words of thanks... to everyone who has been messaging me and texting me - your words of support have been great. Sorry I havent been able to catch up with everyone, but things will get a little less frantic now that Im getting settled into a routine. Special thanks to Miss L for a lovely lunch,  Miss S who unexpectedly got saddled with my job and is doing fantastically as usual (I miss you!), Miss B for offering to help with the kids and suggesting a fundraiser to help with the $18,000 we have to find for internal radiation therapy (anyone with ideas let me know) and the divine Miss M who arranged for a friend in Holland to send me these clogs.... I laughed my head off!!  Love'em!   Until next time, keep smiling!

Last week I had a rather unpleasant biopsy to see if I had cancer in my womb as the pet scan had picked up a 'hot spot'.  The results were inconclusive, so my Oncologist scheduled me for an urgent D&C for a certain result.  The Gynae registrar called back yesterday.  He said they had a meeting about me, and I dont need another surgery as there is 5cm mass in my adnexal region (ie ovary), so I am off the sirflox trial and I need to start chemo asap.  That was his way of saying I have a new cancer in my ovary that is not related to my other cancer.  Close your eyes if you are sensitive to foul language, but for fucks sake why didnt they pick that up in my first surgery on that ovary when they were having a good look at it?  Why didnt the pet scan, 2 cat scans or MRI pick it up?  And why do I have to have another brand new cancer?  Not bloody fair.  I mean really, this is just not right when Im fighting so hard to stay positive.   I cant have it removed because chemo stops cells from growing, so the body needs six weeks to heal first and I need to start chemo next week.  Im sooooo frustrated, angry, stressed, depressed, pissed off, upset... you name it!  I will get over the shock of it and get refocussed on being positive and getting well.  Im back to Oncology on Friday so will see how that goes. 

I am fortunate to have so many wonderful friends who have offered to cook, clean, pick up the kids, babysit.... travel down from Qld to visit, arranging prayers to be said.   So far my friends have organised for the Lutherans, Catholics and Buddhists to pray for me so Ive got a fair few bases covered there - not bad for a heathen!

I tried on some wigs during the week so my bald head doesnt scare the kids at school, but seriously I looked like an overgrown muppet!  Might stick to hats unless I can find something decent.  Ive got long hair at the moment so Im thinking of cutting off my plait and stick it out the back of a hat - at least I can say its my own hair! I think we will have a ceremonial hair cutting event and make it a a bit of fun, Im sure Izzy would LOVE to play hairdresser!  Might be best not to include Tom in that one, he has already given himself a haircut at school this term!!

Now Im in a philosophical kinda mood so heres my thought for the day....Sometimes when you are bogged down with work and running around after kids its easy to lose perspective on the important things in life.  Take a moment to slow down, stop and enjoy the simple things... you might just discover you are happier than you ever realised! 

Enjoying a good wallow....

Hi there!  Just a quick update.  My test results were 'inconclusive' so Ive spent all of this week having a range of further tests.  I must confess I was upset when the oncologist told me because the biopsy had been really unpleasant, and also I was hoping to get started on treatment.  She has also found something wrong with my ovary - all she can say is its 'something' and not 'nothing'. Please not another tumour.  I thought it quite reasonable to ask why they hadnt taken the damn thing out during my original surgery, but she didnt know.  So now Im waiting for a call up for another day surgery this week.   Its really not fair to have something else wrong, surely what I have should be enough.  There, thats enough wallowing!

On a brighter note, I had my colonoscopy on Monday (hello Dr Handsome again!) and it really wasnt a big deal. He removed two very small polyps so now the original site is cancer free!  Those are magic words. So now its back to keeping fingers and toes crossed for a good result from this next round of tests.   

Ifs and Buts

Here's a quick update...Im recovering really well from the surgery, I dont feel sick in the slightest!  If they told me my scans had been mixed up with someone elses I would fully believe it, then sue their arses off!  I missed my best friends wedding in Brissy on the weekend, and now  Im really pissed off at this cancer and want it gone, gone, gone!   Im sticking to my strict diet, even over Easter which is quite amazing for me.   Had another test yesterday - not much fun but I wont go into detail.  My pulse and blood pressure dropped suddenly so yet again they tilted the table back and I ended up with my feet waving at the ceiling... not very ladylike! (I had to sleep all night like that in the hospital after surgery, I have become very familiar with the sight of my toes).  It passed very quickly, thank goodness.  I have another ultrasound tomorrow (Fri) and get the results on Monday so fingers crossed they find nothing.   That would mean I can progress through to the next stage of being assessed for the clinical trial. 

The next step is an angiogram to check if my hepatic artery leads off to other organs or just to my liver as it is supposed to.  They dont want the little 'magic beads' ending up in my lungs.  I hope I dont jinx myelf by mentioning that 90% of people have their artery leading to the right spot so odds are good.  If the results of the angiogram are ok, then my name gets sent to a computer in America that will randomly choose if Im in the trial or not.  Ive already told my Oncologist that if I make it through but get selected for the control group then I will withdraw from the trial and have the spheres anyway.  It costs nearly $20,000 as both sides of the liver need to be treated...  good onya Australian Government for not approving any new drugs this year! 

The kids are both doing really well.  We have told them I have the type of cancer that Kylie Minoge and Delta Goodrem have, so they dont freak out when I lose my hair.  They regularly check my scar to make sure it is healing, and I havent hidden it from them.  Izzy has called my cancer 'lumpatron' which is really funny.  (die Lumpatron, die!). While the kids are at school I have been having a big spring clean that is well overdue.  Mum is staying - she has been cooking some wonderful meals that we have frozen for later.  Right now her famous chicken curry is simmering on the stove and the whole house smells wonderful!  Will post again next week when I get my test results.

D-Day!

Diagnosis day....
I have colon cancer with liver mets, and I had no symptoms beforehand.  I went in to hospital for what they thought was appendicitis.  When I awoke from surgery I was told it had in fact been a burst ovarian cyst.  No problem, just go home and rest up for a bit.  So off I went.  But a few days later the pain was still there so I went back in.  They said it would most likely be an infection or possibly a bleed from the ovary so they gave me a catscan to check.  I laid in my hospital bed expecting to be put onto antibiotics or at worse a minor procedure.  The Drs face was very grim as he pulled the curtain around my bed and told me the CT had showed something very concerning.  My colon was nearly blocked with a tumour.  I had surgery the next morning to remove it.   It was supposed to be a keyhole surgery but ended up being open, so I awoke with a morphine pump, catheter, multiple drips and a delightful naso-gastric tube.  My bikini modelling days are over!  That evening the Dr repeated the 'ive got bad news' thing - he had seen secondary cancers in my liver, at least five, and that they were inoperable.  Apparently a person can live with a third of a liver, but my tumours are right throughout.  Shit, shit, shit!  The next few days consisted of crying (a lot), disbelief, lots of needles, MRI's, cat scans and pet scans (of me, not the dog) and various indignities.  My poor sister in law who works at the hospital had an uncanny ability to come and see me when I was emotional... poor sister Sal!

Amongst the chaos there were funny moments too, we started a game of 'bum watch' - making an unsuspecting visitor (mostly Andrew!) look at a bare bum without them realising it was coming (ie 'Hey Andrew, look at those lovely flowers on the other side of the room.... eeeeew!).  Gotta keep laughing!   A week later I was sooooo ready to go home!

A few days later I attended my first oncology appointment where, to be quite honest, I found my Oncologist quite uninspiring.  Yes I know its bad but no, Im not one of your statistics - Im a real person so fight for me please!  However he told me about a clinical trial - sir spheres. I immediately signed up and am currently going through the assessment process.  The only other treatment is chemo which I'll be starting in  a week or two.  Yes Ive had a second opinion - will the spheres wreck my liver?  How the hell would I know, its all a risk.

Unfortunately the last scan picked up another lots of small tumours in my liver that the first scan didnt see, and 'something' in my womb which might exclude me from the trial, wont know what it is until yet further tests. Im beginning to know how those people who reckon theyve been probed by aliens feel!   But we've decided to give the spheres a go even if I dont get into the trial (cost over $8,000 because the Therapeutic Goods Administration has apparently made a blanket decision that it isnt approving new drugs this year.... glad I didnt vote for that government!)

My visit to the naturopath at the Cancer Care Centre was in stark contrast to the Oncologist.  She is warm and VERY positive - lots of stories of amazing people who have beaten the odds.  Most importantly, she offers hope.  Hope is a powerful thing, because Im in with a chance and Im going for it!  And to do this I need to be in a really postive headspace.  (I wonder if this will be as easy when Im feeling the effects of chemo).   Im now on an organic, wheat, dairy and sugar free diet and feeling fantastic for it!   I have 3-5 glasses of vegetable juice a day - get this - its carrot, beetroot, cabbage, broccoli, cauliflower and apple.  Now that should be a fart brewing potion if ever there was one, but its suprisingly not - and quite pleasant to drink!  (Unlike her herbal potions that could strip paint)  But its been great following her regime.  It is very empowering, and I firmly believe that it will help me to beat the odds.  Im too stubborn to 'pop my clogs'.  The Dr can get stuffed, he doesnt know how hard I am going to work and that I will beat this insidious disease!  When the liver surgeon told me I would need an amazing result from chemo for him to be able to operate, my response was 'well get ready, because thats whats gonna happen!'.  Did I mention I can never drink alcohol again??????

My first blog!

My name is Jen - mother of two, wife and just diagnosed with stage IV colon cancer. 
This is my first blog, hopefully I'll get better at it as I go!  I thought I would give it a try because lots of friends have been ringing, texting and emailing to ask how I am going. And I really appreciate each and every one!   Im finding it a bit hard to pick up the phone just yet as Im still in a state of disbelief.  It feels like my old pre-cancer life (which I was quite happy with by the way!) has been ripped away and now I live in crazy, scary new post-cancer world - and I dont like it!  Its hard to talk to friends for the first time since my diagnosis - 'how are you?  By the way I have cancer and its serious' - bit of a conversation killer!  So I thought perhaps I would blog updates on how my treatment is going so that you don't have to ask (unless you want to) and I don't have to answer (unless I want to).  Because in between cancer and the horrible treatments are birthday parties, sports days, play dates, bbq's and hair cuts!  Kids help to keep life normal and on track!  So if you like, check back every now and then for a quick update so next time we see each other we can talk about more important things!