OK, there is quite a bit of news. Simon went to Peter Mac on Monday and was told that the nerve tests wouldn't be done this week which was obviously really disappointing. Simon had been dreading being back in hospital, as he is bed ridden for the whole time because of being hooked up to the IV machine and on crutches, but thought at least he was having this done. He was annoyed that they had told him they would do it, so that he didn't get the doctors at Myer St to do it. Meanwhile I received the appointment time for the test, which wasn't until July 23rd! I didn't even mention this to Simon!



Fortunately, yesterday one of the good doctors heard this and rang the place that does the test, told them that this was urgent and they slotted him in to a cancellation today at 1.30pm. That was really great! The test was fine and told them that the nerve damage seemed to be in his shoulders and would most likely heal itself. This is good, but they couldn't tell us whether it would be two weeks or a year!

Another good doctor prescribed some tablets to help with the pain in his hands. They seem to help a little bit which is nice. Why no one knew of this drug six weeks ago, I don't know! As mum said, "Oh they're characters aren't they"! But it's really good he has them now.

On his first day there he was waiting for a knife to cut the cheese (!) for his lunch. He asked 5 different people. Dinner came around before the knife did, so he was forced to skip lunch. And he had to wait for most of the day before someone was able to bring his bag up from the car. It's hard for him having to rely so much on other people for so many things.

On Tuesday morning he was dozing as the cleaning lady mopped around his bed, which is extended because of his height. Suddenly she slammed the extension shut and Simon was just able to move his leg in time before she broke it, because he didn't have the brace on! It's scary to think of all the things you don't even think about that could go wrong.

This morning they woke him at 4.40am to do his obs, checking temperature etc... which drives him crazy! He has (fortunately) never had a high temperature, so there doesn't seem to be any obvious reason why they wouldn't let you sleep for a couple of hours more so that your day isn't quite so long.

His hair is starting to come out again, and this time even his eye brows are affected, so that will be a bit harder for him than last time, but it's nice that it grew back so quickly last time.

This seems like a long list of whinging, but it's just really a list of things that have been happening this week that haven't all been great.

On a brighter note, Daisy, Kitty and I have had fun going up on the train each day and having dinner with him both nights. It's really nice having the excitement of getting to visit him. And he is so bored and lonely that he REALLY loves seeing us (I know he does anyway, but it's just magnified!)!

Other great things are that Simon is the only patient they let home with this kind of chemo when his counts are .2. Everyone else has to wait until theirs are .05 which can take a week! As I write this Simon is waiting to hear from the doctors if he might even come home tonight after only 2 nights because his counts are .14, so the nurses are just double checking. That would be amazing to have him home so quickly!

Yesterday Simon's work gave me a voucher for a facial or massage or whatever I want which is just amazing of them. They have been ridiculously supportive anyway without doing something like this.

This whole thing has really emphasized how surrounded we are by lovely people, our wonderful family, and soooo many others.

Everyone at church continues to be unbelievably supportive in so many different ways, but especially in prayer.

We have so much to be thankful for I can't believe it sometimes.

He was just told he can come home now. I'm amazed at how exciting this experience can seem at times!

Simon has an appointment at Peter Mac today with the oncologist, Prof. Toner to talk about the rest of the treatment plan (I think only 16 weeks left!). And hopefully he will be able to get some medication for his latest treat... gout! The infection in his left leg doesn't seem to be getting any worse since the doctors at Myer St changed the kind of dressing they put on it.

He has a few questions for Prof. Toner, both of his legs are pretty swollen, there is some clear, hard thing sticking out of the top of the wound in his right leg and some numbness around the wound. He is also hoping to see Prof. Choong who he hasn't seen since he left hospital. The doctors at Myer St have been trying to contact him because they are thankfully concerned enough about the unchanging bad condition of his hands to want to solve it and fix it, but he hasn't been returning their calls which is pretty annoying! They are wanting to run some tests and are waiting to get the go-ahead from him.

We are really grateful for their concern and the hope of tests and a cure. Simon is finding it so difficult and depressing and although Prof. Choong has acknowledged that it is most likely caused from the anaesthetist during surgery, it seems as though Simon has just been discharged and forgotten. Simon wants to punch the anaesthetist and I want to smack him.

Poor Kitty is finding things hard at the moment. She used to love going to kinder but now cries every time I take her and doesn't want to go. Her kinder teacher told me that she has become very withdrawn and just wants to stay with the teachers the whole time rather than playing with her friends like she used to. She has also been asking them alot of questions about what will happen if I don't come back and who would feed Hugo because he can't feed himself if I went away and how would they get to kinder vbecause it's too far for them to walk. I think it started when Simon was in hospital for so long after the surgery. She doesn't want me to go anywhere without her, so I feel pretty sad about that. It's been good having Simon back for these three weeks, but next week he starts the chemo where he is in for 4-5 nights each week for two weeks, so that will be hard for her again.

I am just loving having Simon home with us. Sometimes things seem really hard and exhausting, and it's difficult when he is feeling so sad and I can't help him, but I just can't get over how blessed we are. Exactly 5 months ago today we recieved the news that he had a tumor and a good outcome would be to lose his leg, rather than his life! I was dealing with losing Simon to this, rather than getting my hopes up for anything else.

Sometimes I feel as though I'm being insensetive to him if I'm feeling happy when he is sad. Sometimes I do feel really sad with him, but most of the time I am just trying and feel like I'm only being faux-sad and empathetic because I just can't make the excitement go away. He is very amazing, because I can't imagine how hard it is for him dealing with not being able to do very much at all by himself and he is constantly uncomfortable and very often in pain with his hands, but he isn't constantly complaining like some people might.

This morning at breakfast we were having a boys in the house vs girls in the house competition.
- All the girls in the house can do handstands, the boys can't
- All the girls can run, the boys can't
- All the girls can walk by themselves, the boys can't
- All the girls can jump, the boys can't etc...

Anyway, I will write more if there is anything particularly interesting to report from his visit to hospital today.

Simon went into work yesterday and today from about 10am until 4pm which was really good for him. He has been feeling pretty depressed about everything. Unfortunately the lady in Melbourne couldn't help with his hands as it's more of a neurological problem than carpal tunnel syndrome. So he was left again with no one able to help or tell him exactly what it is or how long it will last, or even if it can be fixed. He felt pretty annoyed that no-one from the hospital had seemed to really care or want to help.

He has been seeing the doctors at Myer St for his wounds on his legs, as they are a little infected and need to be watched closely because of his immune system being compromised from chemotherapy. Today he mentioned his hands to the doctor and she is organising some electro-magnetic tests (I think I have made up that name, but it's something like that...possibly.) and maybe getting a neurologist to look into it. So it's nice for him to again have some hope of help. It's also made a difference for him being back at work, even though he is pretty limited there, it's still nice for him to be doing something.

Eeek! Sorry, it's nearly been a week since I last wrote. It's been a little busy! Simon has been feeling a little down over the past few days. He feels like he could go insane with the carpal tunnel. We are going to see a lady tomorrow who does remedial massage, who may be able to help and if she doesn't, mum has found someone in Ballarat who has been known to help cure this, so at least we have these to look forward to. He has just been feeling so hopeless, unable to do very much for himself at all.

The girls have been asking if he is ever going back to work! And they talk about things that we did "before daddy's leg got sick". It's nice to be able to tell them that although it is taking a long time and there is a long way to go that his leg is getting better. They are excited for him to be able to chase them around and play with them properly again!

We are expecting Simon home hopefully before midnight tonight. He went to Peter Mac to start chemo again yesterday morning and it won't finish until about 10pm. This morning his left shoulder didn't feel as bad as it normally does, but his hands are still as bad as they were. It's amazing how quickly his hair has started growing again, I wonder how soon it will stop growing this time.

He is in a room with three others this time which has been less enjoyable for him, especially as he can't leave his bed because of not being able to drag the machine around while he is on crutches, still it is sooo much better than the 14 day stay last time! He was happy to be able to drive up which makes it easier for him coming home tonight and he was really happy to get chocolate from David this morning for breakfast (it has calcium) as the hospital porridge was so watery. It seems easy at the moment and exciting that after this week, only 119 more sleeps to go till his last round of chemo is finished!

Some pretty good news...

We just got a call from the Doctor at Peter Mac saying that the results of the tests done on the tumor show that the chemo killed 95% of it! This is so wonderful. Apparently 90% and above is a good response and they said we should be really happy with these results. If it was anything below they would have had to change the chemo and it would have gone for 30 more weeks and just not being in the good responder group is a bit scary, but now we only have 18 weeks of chemo to go!

Simon's hands are still just as bad which is annoying him, he is just taking it really easy today. He drove for the 1st time yesterday which he liked because he finds it hard just doing nothing.

I am in a bit of shock, because although it seemed good with tumor shrinkage and scan results, 90% is still high and we weren't sure it would be that good and I didn't want to think about it too much and get my hopes up. I sort of can't believe it! This is just such exciting news and now we have a finish date to look forward to! AAAAHhhhhhh! (big sigh of relief).

Hip-hip-hooray!

He is home today!! (Last night actually). The guy making the cast was on his way into the hospital on Tuesday, so we waited, waited, waited, then eventually went to sleep. Yesterday he said he would be in between 1 and 2pm, so I went up and we waited, waited, waited some more and eventually at 7pm he turned up and we were home about 9.30 last night. So it was a long, long drive for him (cast man) from Dandenong to the city, over 24 hours!

It was weird thinking that Simon was finally coming home, we had almost become used to him just being in hospital even only after 14 days. The kids are pretty excited to have him back. Every day they were asking when he would be back (which I couldn't answer) and commenting on what a long time he was in hospital for this time.

He has a big fat cast on which has to be locked straight when he is walking so it's pretty tricky, but he is slowly getting the hang of it. It's a pretty serious cast but protects his leg if he accidentally puts weight it, so once he gets used to it, it will be really good.

He is mainly resting today, but feeling OK. His hands and left arm are still making things difficult and painful for him which he finds so frustrating, but he is very happy to be home. It's been a nice day.