I know, I know

Yeah, it's been a long time. So sue me. I'm sitting in the public library (I didn't know there was an upstairs!) because the laptop at home has gone kompletely kaput. Rich is having a great time with the American call-centre to get them to fulfill the warranty. I swear, Americans don't even realise that there is a world outside America.

But that's not my only excuse, I have plenty more! It has been a very crazy couple of weeks. Last week Dave (my stepdad) came down for a week's visit, which was lovely. On Wednesday, however, the phone call came from my grandfather who had been looking after my brother Tim - Tim had appendicitis and was going in for surgery that afternoon. So we ran around trying to book flights for Mama to get back to Mackay. Timmy's surgery went well - he is now being encouraged to lie under a doona on the couch and watch DVDs all day - Tim's idea of nirvana.

Dave's operation is on the 30th May, so Mama should be well recognised at the hospital soon. Someone asked me yesterday if she was going for hospital frequent visitor points - poor Mama! I think she's a bit frazzled - three operations in a month is a bit much for anyone to cope with. I'm going to go up to Mackay on the 30th and be as useful as possible - well, I can cook and make cups of tea, anyway.

My big news is that chemo has been officially postponed. The cancers are currently two small to be seen in a CT scan, and opening me up each time we want to see how things are progressing is really impractical. So we could do chemo now, but then we would have to wait to see if the tumours grew bigger before we could assess whether the chemo had been effective. I've decided to do the waiting in the beginning - so wait now, and when the tumours are measurable, then I'll have the chemo, so we can assess its effectiveness as we go.

The reasoning behind this is that it really doesn't matter when we have chemo. The chemo will kill off ALL the susceptible cells - whether there are twenty cells or twenty thousand. So it doesn't matter how big the tumour is, it doesn't change the chemo's effectiveness. And since it doesn't matter, I'm enjoying being fit and healthy with lots of hair.

So the plan is to scan monthly, to monitor the tumour's growth. We have no idea how fast it's going to grow. With this type of tumour, growth is usually fast. All my doctors have been surprised that this tumoru didn't grow back two years ago. So either it grows nice and slowly in me, or it lay dormant for quite a while. Either way, there is every chance that it will do the same thing again - either grow slowly or lie dormant for a while. So it could be months or even years before I have chemo.

So that means I'm going back to work! After my six weeks recovery period, I'm going to go back to work and back to normal. I will have my first scan first, however, so that we have a vague idea of what the tumour is doing - if it's already growing really fast, I won't be going back to work - I'll have to go straight to chemo, do not pass go, do not collect $200. But at this stage it does look like I'll be going back to work in a few weeks.

In the meantime, we are still spending lots of time with family - my Dad, Beata (my step-ma) and sister Sophie were down last weekend. I keep forgetting how chaotic a three year old is! We went to the zoo and a few more outings. It was really lovely to see them. This weekend my beautiful Amy is coming down and we are going to get all dolled up and get some glamour shots taken. Instead of a tattoo. (Although I have to tell you, the tattoo was MUCH cheaper!) And then Rich's parents are down for a few weeks, which will be lovely.

Well, that's my allocated half an hour on the library computer used up, so more from me anon!

This just in...

And now, the news.

We did actually find all of this out on Friday, but we've spent the weekend trying to process it ourselves as well as tell immediate family.

So obviously it isn't good.

The results of all the biopsies are in. My left ovary is also cancerous. There is also cancer in some of my lymph nodes, which means it's in my lymphatic system (or immune system). This is obviously quite bad news, it means that the cancer has spread.

This means more chemotherapy, which I was really hoping not to have to do again. We met with the chemo-oncologist on Friday. He is meeting with his fellow oncologists on Wednesday and then again on Friday to discuss my case, and then we're seeing him on Friday afternoon to discuss the plan for my treatment. So we'll know exactly what sort of treatment I'll be having (as well as the schedule) this coming Friday.

Chemotherapy is very 'scary' to most people. It's really not that intimidating. Chemotherapy is just chemical or drug therapy - large doses of drugs to fight the cancer. Chemo drugs kill off fast growing cells such as cancer cells. Unfortunately, it has a lot of side effects, because it's can't discriminate between fast growing cells, so things like hair falls out as well, the stomach is affected (thus the nausea), and the reproductive and immune systems are also compromised. But as far as treatment goes, it is pretty easy - my chemo will be intravenous, so basically I go to the clinic, sit down with a bag on a drip, and when it's absorbed I go home again. It's pretty easy, apart from the fact that it will make me pretty sick. I coped quite well last time though, and I'm fully expecting to cope with it this time as well.

One of the other implications is that since the only ovary I have is cancerous, we can't go ahead with the egg harvest. The chemo I'm about to have will probably affect my fertility, so I'm very disappointed and definitely very sad about that. Still, it's not certain that I can't have children - IVF technology is very impressive these days and even if I can't, there are stil plenty of options left to me anyway.

On the plus side, you'd never guess that I had major surgery a week and a half ago. I'm up and mobile, feeling pretty good. The wound has almost completely healed. I'm walking around with no problems, although I can't stretch upwards, or twist around, or bend down (shucks, still no dishwasher loading or vaccuum cleaning). So I'm very glad that the surgery happened in the beginning before the chemo while I'm still fit and healthy!

Bored now.

Sorry, the blog has been quite unexciting for the past few days. Well, there's a very good reason for that - so has life at this end! I was allowed out of hospital on condition that I did absolutely NOTHING, and so I am. And it's quite pleasant, lots of reading, a trip out in the chair each day, a bit of time writing or surfing, and just hanging out with my Mama - but it's not particularly
newsworthy!

We've also had some wonderful people over to visit - Rachel came over last night and brought the makings for all of dinner - it was definitely a new thing to invite someone into my home and have them take over the kitchen! But much appreciated all the same!

We are going to see the oncologist on Friday IF the pathology results are back. I will have more to report on Friday when and if we see Dr B.

Till then, I'm just industriously healing...

From left corner of couch, with love

Hello all,

Not really much to report. I am doing ABSOLUTELY NOTHING as instructed, just curled up on the couch for most of the day, with the odd foray to the balcony for vitamin D and to the study to update you on the couch-sitting.

I'm still in a fair bit of pain, and movement is obviously still quite restricted. However, it's just a matter of time and healing now. Mama is looking after me extremely well - she's cooking all meals, made biscuits and date cake for any guests, cleaning, even did the hand washing that's been sitting in the sink for the past eight weeks!

I do have a new email address - jdisteldorf@gmail.com. The old hotmail account is so full of spam it's virtually unusable now. Drop me a line, I'm home all day! I'm also open to ideas for writing while I'm off work - loving the foood blog idea, Nette...

Hope you are all well.

A Day in the Life of a Wheelchair

Hello all. Since I'm confined to the couch, the only forays I can make outside the apartment are by wheelchair. I thought I would take this opportunity to experience life from a different perspective and report back on some of my findings.

1. Day One
2. Day Two
3. Day Three