Monday, 30 May 2011

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!!!

Wednesday, 25 May 2011

Saturday, 21 May 2011

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!

Wednesday, 11 May 2011

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! 

Tuesday, 10 May 2011

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.   

Wednesday, 4 May 2011

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.