Simon is on his way home now, a few hours earlier than we expected which is great! He is feeling a little tired and doesn't have much of an appetite, but otherwise he's OK so far. He's been able to do a bit of work in hospital.
We will be praying he doesn't get sick while his counts are down. It's really nice to be having him home for the next three weeks, partly so I can stop sleeping beside a cricket bat for protection.
Wednesday, February 27, 2008
Tuesday, February 26, 2008
Tuesday 26 Feb.
He is back in ward 9 again. He drove himself up this morning and has his own room which is pretty good. He is feeling fine and they are going to give him stronger anti-nausea drugs this time to try to stop it. He will also try to get some drugs to stop those crazy hiccups (apparently they exist) that he had for days after the last time and he should be able to drive himself home tomorrow night!
It is better this time, having some idea of what this treatment and the following weeks will be like. He hasn't felt any pain in his leg for about a week which is supposed to be a good sign, again no guarantee but obviously better than increased pain. It's hard not to think about how much harder it must be for people who don't have any positive signs during these times.
It is better this time, having some idea of what this treatment and the following weeks will be like. He hasn't felt any pain in his leg for about a week which is supposed to be a good sign, again no guarantee but obviously better than increased pain. It's hard not to think about how much harder it must be for people who don't have any positive signs during these times.
Saturday, February 23, 2008
Saturday 23 Feb
Yippee! Simon came home last night which was such a surprise. It's been a nice week. We are tired but very happy. He goes in again on Tuesday for an overnight stay, then home for 3 weeks. It is very, very nice having him home with us.
Thursday, February 21, 2008
Thursday 21 Feb.
It has been another good day. Simon had a great time playing poker and air hockey with the bald boys last night. He also had a feast of giant vegan tim-tams (yes, it's true) and delicious vegan chocolate cake from David. I went up and had lunch with him today. We sat outside the hospital for a bit and noticed how people stared, maybe because of Simon's big drip trolley he has to drag around, maybe because he's bald, or maybe because they saw me fall over yesterday, I'm not quite sure.
Tomorrow evening Daisy, Kitty and I will go up together and have dinner with him which we are excited about. Also, it seems as though the lump on his leg isn't as big as it was. Simon mentioned this to the doctors and they said it doesn't guarantee anything, but it could be a good sign and it's obviously alot better than if it was getting bigger. Without getting our hopes up too much, it is pretty exciting. It could also mean that it is more likely to be the osteosarcoma, the 'good' kind, rather than that rotten mfh of bone, which was not so good, so we are praying for this.
Tomorrow evening Daisy, Kitty and I will go up together and have dinner with him which we are excited about. Also, it seems as though the lump on his leg isn't as big as it was. Simon mentioned this to the doctors and they said it doesn't guarantee anything, but it could be a good sign and it's obviously alot better than if it was getting bigger. Without getting our hopes up too much, it is pretty exciting. It could also mean that it is more likely to be the osteosarcoma, the 'good' kind, rather than that rotten mfh of bone, which was not so good, so we are praying for this.
Wednesday, February 20, 2008
Wednesday 20 Feb.
He has had another good day today. I was able to go and have lunch with him, which went too quickly! He seems to be doing better than me, I fell over outside the hospital as I was carrying coffees for us, and the nurse had to get dressing and a band aid for me and I think she was thinking how pathetic I was because I don't have cancer or anything and I was trying not to faint and cry. Right now he is playing some board game with nine other baldies (they all shaved their heads). So I guess he will expect any future visitors to do the same.
Tuesday, February 19, 2008
Tuesday 19 Feb.
The weekend went pretty quickly, it was pretty exhasuting. It was hard trying not to think too much about him having to go back up again today. He drove up this morning after a sad goodbye.
He is pretty happy because he is in a room by himself at the moment and there is more room around his bed and only two other beds in there if it does get full. There were 3 others in the last room. The drip is in at the moment and they will start the chemo at about 2pm.
He is excited because a group of guys from church are going up to play games with him tomorrow. And he is able to do work this week, so he is feeling pretty positive.
He is pretty happy because he is in a room by himself at the moment and there is more room around his bed and only two other beds in there if it does get full. There were 3 others in the last room. The drip is in at the moment and they will start the chemo at about 2pm.
He is excited because a group of guys from church are going up to play games with him tomorrow. And he is able to do work this week, so he is feeling pretty positive.
Saturday, February 16, 2008
Saturday 16 Feb.
He got the all clear to come home this morning, so David and Debbie picked him up (thank you so much). It is very exciting to have him home. We (Daisy, Kitty and I) shaved his head, as it is starting to fall out a little faster, not too obviously though.
We had a nice relaxing day around the house, then took the kids to the park in the evening and had a picnic dinner. He feels pretty tired as he's not used to doing anything! He will be back up in Peter Mac on Tuesday for another round of this chemo, so at least this time we will just expect him to be in there for 5 nights. Yesterday was pretty hard, after an exhausting week but probably made today even more exciting. It is very lonely without him here, I'm so glad to have him back for a bit.
We had a nice relaxing day around the house, then took the kids to the park in the evening and had a picnic dinner. He feels pretty tired as he's not used to doing anything! He will be back up in Peter Mac on Tuesday for another round of this chemo, so at least this time we will just expect him to be in there for 5 nights. Yesterday was pretty hard, after an exhausting week but probably made today even more exciting. It is very lonely without him here, I'm so glad to have him back for a bit.
Friday, February 15, 2008
Friday 15 Feb.
Friday 15 Feb.
Simon will be getting another blood test this evening to see if he can come home. It all seems a bit exhausting at the moment. I'm not sure whether to visit him or wait and see if he can come home, then wonderful David will drive up to get him. I find it hard making decisions anyway. The kids are desperate to see him. Simon is finding it really hard being up there so long and not knowing when he will be home (but was very grateful for another coffee drop by Carolyn!).
Days like today make it hard not to feel overwhelmed by the fact that this is what we need to get used to for the rest of the year. Nothing even bad has happened. I just miss him and am tired and don't like having to organise things and not be with Simon and Daisy, Kitty and Hugo as much as I would like. I'm glad I don't feel like this all of the time!
Simon will be getting another blood test this evening to see if he can come home. It all seems a bit exhausting at the moment. I'm not sure whether to visit him or wait and see if he can come home, then wonderful David will drive up to get him. I find it hard making decisions anyway. The kids are desperate to see him. Simon is finding it really hard being up there so long and not knowing when he will be home (but was very grateful for another coffee drop by Carolyn!).
Days like today make it hard not to feel overwhelmed by the fact that this is what we need to get used to for the rest of the year. Nothing even bad has happened. I just miss him and am tired and don't like having to organise things and not be with Simon and Daisy, Kitty and Hugo as much as I would like. I'm glad I don't feel like this all of the time!
Thursday, February 14, 2008
more from 14 Feb...
Thursday 14 Feb cont...
I just got back from the hospital, unfortunately without Simon. It's not as frustrating as it seemed last night and this morning though as the results aren't low enough for him to come home. There isn't any way of telling how soon that will be. They will just keep testing each day. His white blood count shot up to 21 (normal range is 2-7) so they were concerned he was getting an infection and his body was fighting it. They couldn't see any other signs of infection, so think his white cells are reacting to the chest port being put in.
He enjoyed having visitors today, as he finds it pretty hard being in there.
Hopefully he will get a good night sleep. It's been pretty interrupted lately as one of his room mates has a snoring, burping and flatulance issue, so that is interesting for everyone.
Tonight mum looked after the kids (thank you so much again mum) while I took dinner up and Simon and I had a romantic valentines/anniversary dinner. (It wasn't romantic, but we had a really nice time).
It's pretty sad not having him home, but nice to look forward to when he is. I still can't get over how much everyone is willing to do for us. It is very amazing.
I just got back from the hospital, unfortunately without Simon. It's not as frustrating as it seemed last night and this morning though as the results aren't low enough for him to come home. There isn't any way of telling how soon that will be. They will just keep testing each day. His white blood count shot up to 21 (normal range is 2-7) so they were concerned he was getting an infection and his body was fighting it. They couldn't see any other signs of infection, so think his white cells are reacting to the chest port being put in.
He enjoyed having visitors today, as he finds it pretty hard being in there.
Hopefully he will get a good night sleep. It's been pretty interrupted lately as one of his room mates has a snoring, burping and flatulance issue, so that is interesting for everyone.
Tonight mum looked after the kids (thank you so much again mum) while I took dinner up and Simon and I had a romantic valentines/anniversary dinner. (It wasn't romantic, but we had a really nice time).
It's pretty sad not having him home, but nice to look forward to when he is. I still can't get over how much everyone is willing to do for us. It is very amazing.
Thusrday 14 Feb.
Well, we are still waiting! At 11pm last night we found out that the afternoon nurse hadn't told the night nurse that we were waiting on results for Simon to come home. It was pretty frustrating, because she knew how important it was. We had been half hoping he would have been able to come home last night. This morning when I called him a nurse had just told him that he wouldn't be able to come home until Friday now, but didn't give a reason. It was hard not to go to the hospital and slap them. It wouldn't be so hard if they didn't keep changing the details. It all just seems so inconsistent. We would rather just be told Friday in the first place and not get our hopes up, or at least not have each person tell us different things.
Simon is feeling really good health wise, just frustrated. We are waiting on the latest blood test now. It turns out the one last night (when we got the results mid-morning today) were .3 and it needs to be .05. So he wouldn't have been allowed home then anyway which makes it less annoying that they weren't even checking for the results last night. It's hard not being able to tell the kids when he's coming home too. I had told them that it would probably be today, but we are learning that we just can't take what they say too seriously. Overall, the staff are very lovely, we are just learning to be patient. Again, we are very thankful this is the hardest thing we are having to deal with!
Well, we are still waiting! At 11pm last night we found out that the afternoon nurse hadn't told the night nurse that we were waiting on results for Simon to come home. It was pretty frustrating, because she knew how important it was. We had been half hoping he would have been able to come home last night. This morning when I called him a nurse had just told him that he wouldn't be able to come home until Friday now, but didn't give a reason. It was hard not to go to the hospital and slap them. It wouldn't be so hard if they didn't keep changing the details. It all just seems so inconsistent. We would rather just be told Friday in the first place and not get our hopes up, or at least not have each person tell us different things.
Simon is feeling really good health wise, just frustrated. We are waiting on the latest blood test now. It turns out the one last night (when we got the results mid-morning today) were .3 and it needs to be .05. So he wouldn't have been allowed home then anyway which makes it less annoying that they weren't even checking for the results last night. It's hard not being able to tell the kids when he's coming home too. I had told them that it would probably be today, but we are learning that we just can't take what they say too seriously. Overall, the staff are very lovely, we are just learning to be patient. Again, we are very thankful this is the hardest thing we are having to deal with!
Wednesday, February 13, 2008
Wednesday 13 Feb.
We had a really lovely time last night. We sat in the family room at the end of the ward where Daisy and Kitty coloured in, then we all took it in turns of playing air hockey, or hair ockey as Daisy calls it. It was nice all being together (minus poor Hugo!) having fun.
He got the results of the methatrixate count left in his blood last night at about 10pm. They were expecting it to be around 12 (not sure what it started as) and it was already down to 3! It has to be .5 for him to come home again. They were pretty surprised to see it this low and had only known one other patient to have it so low so quickly. So that's exciting. As I write this I'm waiting to hear the next result, should be around the same time, to see if he can come home soon. If it's close tonight they will do another test in the morning and he might be able to come home then. It's pretty lonely at home without him and I can't stop eating chocolate.
It's been so good having Jane here when I wake up during the night, knowing she's just down the hall. On the 1st night she stayed when we had to leave at 5.30 am, we came back 10 minutes later because Simon had forgotten his wallet, so he snuck in the side door. Jane heard this and assumed it was a burglar so looked around her room for a weapon, found a can of aeroguard (to spray in the face) and searched the house. Fortunately Simon had left, so he was safe. Poor but very good and brave Jane!
This round of chemo has been a lot better. Simon has only felt a bit tired and sick but feels normal today, so it makes the next methatrixate treatments seem less daunting, apart from the lethal dose part of it.
We had a really lovely time last night. We sat in the family room at the end of the ward where Daisy and Kitty coloured in, then we all took it in turns of playing air hockey, or hair ockey as Daisy calls it. It was nice all being together (minus poor Hugo!) having fun.
He got the results of the methatrixate count left in his blood last night at about 10pm. They were expecting it to be around 12 (not sure what it started as) and it was already down to 3! It has to be .5 for him to come home again. They were pretty surprised to see it this low and had only known one other patient to have it so low so quickly. So that's exciting. As I write this I'm waiting to hear the next result, should be around the same time, to see if he can come home soon. If it's close tonight they will do another test in the morning and he might be able to come home then. It's pretty lonely at home without him and I can't stop eating chocolate.
It's been so good having Jane here when I wake up during the night, knowing she's just down the hall. On the 1st night she stayed when we had to leave at 5.30 am, we came back 10 minutes later because Simon had forgotten his wallet, so he snuck in the side door. Jane heard this and assumed it was a burglar so looked around her room for a weapon, found a can of aeroguard (to spray in the face) and searched the house. Fortunately Simon had left, so he was safe. Poor but very good and brave Jane!
This round of chemo has been a lot better. Simon has only felt a bit tired and sick but feels normal today, so it makes the next methatrixate treatments seem less daunting, apart from the lethal dose part of it.
Tuesday, February 12, 2008
Tuesday 12 Feb.
- Tuesday 12 Feb.
He is feeling a bit nauseas and tired today, but not too bad. He was able to eat some breakfast and forced himself to have a bit of lunch. Carolyn surprised him with a decaf soy latte which he was very excited to get! (Thanks so much Caz).
It will be nice visiting him with Daisy and Kitty tonight. Apparently his acidity levels are good. I'm not sure what it means, but it's better than being bad!
He is feeling a bit nauseas and tired today, but not too bad. He was able to eat some breakfast and forced himself to have a bit of lunch. Carolyn surprised him with a decaf soy latte which he was very excited to get! (Thanks so much Caz).
It will be nice visiting him with Daisy and Kitty tonight. Apparently his acidity levels are good. I'm not sure what it means, but it's better than being bad!
Monday, February 11, 2008
Round 2 of chemo...
Monday 11 Feb.
We were up at 4.30 this morning to get ready for the 7am appointment at Peter Mac to get Simon's port put in his chest. We waited for about 4 hours, then he went off to surgery. Once more all of the staff were so friendly. I sat in the waiting area listening to different people talking about their various cancers. It is pretty interesting going through this in a hospital where all of the patients are affected by cancer, seeing all kinds of people living with cancer. It is a surprisingly happy hospital.
Just over one hour later a person from surgery called my name, I waved and she came over and leant towards me, for about 2 seconds I thought she was going to tell me something had gone wrong, but she just told me that he would be going straight up to ward 9 to be admitted for chemo, so that was abit of a relief! She probably likes to scare people.
The room mate this time, Jeff is quite the chatter box. He's pretty nice though and has a kind of sarcoma that is usually found in women, and has only a 1 in 4 million chance of a man getting it, so he must feel special.
The nurses were lovely again. We were allowed to go and have a coffee before he got hooked up to fluids in preparation for chemo. Carolyn came in and we had a lovely time at a cafe next door. Then back for chemo. The chest port is a wonderful invention. I can't go into too much detail because it is rather disgusting. It's inside his chest and hooks into part of the muscle of his chest, then they stitch it over so it doesn't flip over inside him. It has a metal bit to stop the needle going too far, and I think I was fainting for the rest of the information session on it. Anyway, it basically means that for blood tests or any needle, it just goes through this one special port.
I left soon after this to get the kids from mum. It was sad leaving. Tonight Daisy wanted a "huggle" from daddy, so he said goodnight to them on the phone. Simon felt pretty sad hearing how they missed him. Daisy is desperate to visit him every day. She asked why he couldn't have the medicine to make his leg better at home. We will miss him not being here, but we prayed for this to be a nice day (wondering if that was too ridiculous) and it was (ridiculously nice!).
Now he will be in for most of the week until the chemotherapy drug leaves his body. Fortunately lovely Jane is staying here each night until he comes home so that the boogey man doesn't get me.
We were up at 4.30 this morning to get ready for the 7am appointment at Peter Mac to get Simon's port put in his chest. We waited for about 4 hours, then he went off to surgery. Once more all of the staff were so friendly. I sat in the waiting area listening to different people talking about their various cancers. It is pretty interesting going through this in a hospital where all of the patients are affected by cancer, seeing all kinds of people living with cancer. It is a surprisingly happy hospital.
Just over one hour later a person from surgery called my name, I waved and she came over and leant towards me, for about 2 seconds I thought she was going to tell me something had gone wrong, but she just told me that he would be going straight up to ward 9 to be admitted for chemo, so that was abit of a relief! She probably likes to scare people.
The room mate this time, Jeff is quite the chatter box. He's pretty nice though and has a kind of sarcoma that is usually found in women, and has only a 1 in 4 million chance of a man getting it, so he must feel special.
The nurses were lovely again. We were allowed to go and have a coffee before he got hooked up to fluids in preparation for chemo. Carolyn came in and we had a lovely time at a cafe next door. Then back for chemo. The chest port is a wonderful invention. I can't go into too much detail because it is rather disgusting. It's inside his chest and hooks into part of the muscle of his chest, then they stitch it over so it doesn't flip over inside him. It has a metal bit to stop the needle going too far, and I think I was fainting for the rest of the information session on it. Anyway, it basically means that for blood tests or any needle, it just goes through this one special port.
I left soon after this to get the kids from mum. It was sad leaving. Tonight Daisy wanted a "huggle" from daddy, so he said goodnight to them on the phone. Simon felt pretty sad hearing how they missed him. Daisy is desperate to visit him every day. She asked why he couldn't have the medicine to make his leg better at home. We will miss him not being here, but we prayed for this to be a nice day (wondering if that was too ridiculous) and it was (ridiculously nice!).
Now he will be in for most of the week until the chemotherapy drug leaves his body. Fortunately lovely Jane is staying here each night until he comes home so that the boogey man doesn't get me.
Saturday, February 9, 2008
- Saturday 9 Feb.
Had such a delicious vegan breakfast at Dave and Deb's. They are such clever little things. Even the Lakehouse at Daylesford didn't have as much vegan variety as them! While we were lounging about reading newspapers there, Simon pinched some stubble on his chin and it fell out. Then he tried a bit on his head and it fell out. We knew it was between 2 and 5 weeks after the first round that it starts to happen (it's 3 weeks now). Part of us had thought maybe it wouldn't happen, but seems like it is.
It's obviously not the worst thing that can happen, just something that makes it seem real again. I guess when it all comes out he will then look like he has cancer. I wonder if he will want me to draw crazy eyebrows on him and tie pretty ribbons around his head like some people do with bald babies.
Had such a delicious vegan breakfast at Dave and Deb's. They are such clever little things. Even the Lakehouse at Daylesford didn't have as much vegan variety as them! While we were lounging about reading newspapers there, Simon pinched some stubble on his chin and it fell out. Then he tried a bit on his head and it fell out. We knew it was between 2 and 5 weeks after the first round that it starts to happen (it's 3 weeks now). Part of us had thought maybe it wouldn't happen, but seems like it is.
It's obviously not the worst thing that can happen, just something that makes it seem real again. I guess when it all comes out he will then look like he has cancer. I wonder if he will want me to draw crazy eyebrows on him and tie pretty ribbons around his head like some people do with bald babies.
Friday, February 8, 2008
- Friday 8 Feb.
Home again! We had such a nice time but it is really, really nice to get the kids (who had a great time) and come home again. Over the weekend we will be getting ready (not sure how) for Monday when Simon goes to Peter Mac at 7am to get a drip thing inserted into his chest for the chemo so it doesn't kill all of the veins in his arms.
Then he will have the next chemo drug, methatrixate for 12 hours and will have to stay in hospital for about 4 nights. It seems a little scary because they will give him a lethal dose of this, then an antidote within 24 hours so it doesn't kill him. It helps to know they do this to people probably every day, but it doesn't make me feel that good! Also, we're not used to spending nights apart, so feel a bit sad about that, but thankful that we have access to these horrible but hopefully effective drugs.
- Thursday 7 Feb.
We go up to Daylesford for a night and the kids stay at Grandma's. We have a really happy time eating lovely food and not being responsible for anyone! It is our first night away from the kids since we've had kids - apart from being in hospital having them!
- Wednesday 6 Feb.
Simon is feeling good all week and has another games night with the boys and has been able to be doing work most days.
Home again! We had such a nice time but it is really, really nice to get the kids (who had a great time) and come home again. Over the weekend we will be getting ready (not sure how) for Monday when Simon goes to Peter Mac at 7am to get a drip thing inserted into his chest for the chemo so it doesn't kill all of the veins in his arms.
Then he will have the next chemo drug, methatrixate for 12 hours and will have to stay in hospital for about 4 nights. It seems a little scary because they will give him a lethal dose of this, then an antidote within 24 hours so it doesn't kill him. It helps to know they do this to people probably every day, but it doesn't make me feel that good! Also, we're not used to spending nights apart, so feel a bit sad about that, but thankful that we have access to these horrible but hopefully effective drugs.
- Thursday 7 Feb.
We go up to Daylesford for a night and the kids stay at Grandma's. We have a really happy time eating lovely food and not being responsible for anyone! It is our first night away from the kids since we've had kids - apart from being in hospital having them!
- Wednesday 6 Feb.
Simon is feeling good all week and has another games night with the boys and has been able to be doing work most days.
- Sunday 3 Feb (Happy Birthday Carro!)
I was going to go up with Simon, but then we thought he wouldn't be long and it was Kitty's first day at Sunday School, so I took her instead, only to find out that if he had needed platelets or a transfusion he wouldn't have been able to drive, so now I feel like meany wife. But the results show his counts are climbing which is really good.
- Friday 1 Feb
Simon is pretty tired today. He has another blood test today and at 9pm a doctor from Peter Mac calls to say his blood count is as low as it can be and his platelets are dropping so he needs to come up on Sunday for more testes incase he needs more platelets or a transfusion. This seems scary but when I call Carolyn to tell her, her first response is "good" (she used to be an oncology nurse). So either she was being mean, or it means the chemo dosage is right for Simon.
- Thursday 31 Jan.
Simon is again well enough to do some work then play some board game in the evening with the boys.
- Wednesday 30 Jan.
The antibiotics seem to be working slowly and Simon feels well enough to work (from home) for a few hours which is really great.
- Tuesday 29 Jan.
He is still feeling bad and his arm is really sore where the drip went in and it's quite swollen. He goes in for a blood test (he has 3 of these inbetween treatments) to check his platelets and blood count. Then he calls Peter Mac to see if he needs to do something about his arm. They say it sound's like a clot and he needs to see someone.
Dr Sheehan is really good b/c when I ring him to see if he can see him (he is the one who found this thing in the first place) it's his day off, but he calls back 10 minutes later and has got us in to his fully booked surgery with his replacement doctor who sees Simon straight away and they put a note on his file saying he can be seen any time, even when they are full. The doctor is really good and talks to a Peter Mac doctor to give the right antibiotics. It sounded scary that he had a clot. I'm not sure if it was or not.
- Saturday 26 Jan. - Australia Day
He is feeling pretty bad again today and continues to do so over Sunday and Monday.
- Friday 25 Jan. (Happy Birthday Gordon!)
It seems he is becoming a woman. Today he is crying at anything. He is asking for advice on how I cope when I feel like this. I suggest chocolate and a sleep. I am wondering what the next side effect will be. Probably makeup I expect? It feels pretty hard at the moment, especially when we think it's only been a few days and there are months ahead of this. It's nice that people are dropping in. We love that since this all happened people are beginning to just visit. If someone asked if we were up to visitors we may have said no, but when they just turn up, it turns out to be pretty nice.
- Thursday 24 Jan.
Poor Simon is like a pregnant woman. He feels pretty nauseas and it's scary if he vomits because it (the vomit) will be toxic for a day or two after the chemo. Fortunately he doesn't actually vomit, just feels like it a lot. He finds it really hard to eat and is really tired. I get lots of sympathy for having to cook while I had morning sickness! He had hic-cups for about 24 hours which is a ridiculous side affect. It was funny for a bit and then not. A nurse comes to give him an injection. She is friendly and is talking about us working out making decisions about carrying on medical treatment if he is unable to make decisions for himself. So that wasn't very nice. We smiled politely and haven't made any decisions.
I was going to go up with Simon, but then we thought he wouldn't be long and it was Kitty's first day at Sunday School, so I took her instead, only to find out that if he had needed platelets or a transfusion he wouldn't have been able to drive, so now I feel like meany wife. But the results show his counts are climbing which is really good.
- Friday 1 Feb
Simon is pretty tired today. He has another blood test today and at 9pm a doctor from Peter Mac calls to say his blood count is as low as it can be and his platelets are dropping so he needs to come up on Sunday for more testes incase he needs more platelets or a transfusion. This seems scary but when I call Carolyn to tell her, her first response is "good" (she used to be an oncology nurse). So either she was being mean, or it means the chemo dosage is right for Simon.
- Thursday 31 Jan.
Simon is again well enough to do some work then play some board game in the evening with the boys.
- Wednesday 30 Jan.
The antibiotics seem to be working slowly and Simon feels well enough to work (from home) for a few hours which is really great.
- Tuesday 29 Jan.
He is still feeling bad and his arm is really sore where the drip went in and it's quite swollen. He goes in for a blood test (he has 3 of these inbetween treatments) to check his platelets and blood count. Then he calls Peter Mac to see if he needs to do something about his arm. They say it sound's like a clot and he needs to see someone.
Dr Sheehan is really good b/c when I ring him to see if he can see him (he is the one who found this thing in the first place) it's his day off, but he calls back 10 minutes later and has got us in to his fully booked surgery with his replacement doctor who sees Simon straight away and they put a note on his file saying he can be seen any time, even when they are full. The doctor is really good and talks to a Peter Mac doctor to give the right antibiotics. It sounded scary that he had a clot. I'm not sure if it was or not.
- Saturday 26 Jan. - Australia Day
He is feeling pretty bad again today and continues to do so over Sunday and Monday.
- Friday 25 Jan. (Happy Birthday Gordon!)
It seems he is becoming a woman. Today he is crying at anything. He is asking for advice on how I cope when I feel like this. I suggest chocolate and a sleep. I am wondering what the next side effect will be. Probably makeup I expect? It feels pretty hard at the moment, especially when we think it's only been a few days and there are months ahead of this. It's nice that people are dropping in. We love that since this all happened people are beginning to just visit. If someone asked if we were up to visitors we may have said no, but when they just turn up, it turns out to be pretty nice.
- Thursday 24 Jan.
Poor Simon is like a pregnant woman. He feels pretty nauseas and it's scary if he vomits because it (the vomit) will be toxic for a day or two after the chemo. Fortunately he doesn't actually vomit, just feels like it a lot. He finds it really hard to eat and is really tired. I get lots of sympathy for having to cook while I had morning sickness! He had hic-cups for about 24 hours which is a ridiculous side affect. It was funny for a bit and then not. A nurse comes to give him an injection. She is friendly and is talking about us working out making decisions about carrying on medical treatment if he is unable to make decisions for himself. So that wasn't very nice. We smiled politely and haven't made any decisions.
Tuesday, February 5, 2008
- Tuesday 22 Jan.
Up to Peter Mac for 8.30am heart scan to make sure his heart is strong enough to cope with chemo. The guy doing the scan is really lovely and reassuring. Then he is admitted to ward 9 to start chemo.
We feel a little anxious waiting for the chemo to begin. Simon is hooked up to the drip getting different things in preparation for it. He is in a room with one other person, a lovely man called Stan. He is a perfect room mate. Really friendly but doesn't talk the whole time. His cancer is terminal.
At about lunch time the nurses come in and put on protective clothing as they begin the chemo. Simon and I are sitting there waiting to see if he will get a reaction straight away. It just feels cold for a second where the drip is, and that's it. It goes in for one and a half hours on Tuesday and the same on Wednesday with fluids and stuff going in for the rest of the time, until 10pm Wednseday night. The hardest part was that the time for checkout kept getting later and later, so we couldn't complain! (Mum could though as she was waiting in the car for over an hour with the kids trying to get them to sleep).
- Friday 18 Jan.
Had Daisy's 5th birthday today with a little party. Trying to keep things as normal as they can be with all of this going on. Simon played Simon say's (at the party, not just by himself).
Up to Peter Mac for 8.30am heart scan to make sure his heart is strong enough to cope with chemo. The guy doing the scan is really lovely and reassuring. Then he is admitted to ward 9 to start chemo.
We feel a little anxious waiting for the chemo to begin. Simon is hooked up to the drip getting different things in preparation for it. He is in a room with one other person, a lovely man called Stan. He is a perfect room mate. Really friendly but doesn't talk the whole time. His cancer is terminal.
At about lunch time the nurses come in and put on protective clothing as they begin the chemo. Simon and I are sitting there waiting to see if he will get a reaction straight away. It just feels cold for a second where the drip is, and that's it. It goes in for one and a half hours on Tuesday and the same on Wednesday with fluids and stuff going in for the rest of the time, until 10pm Wednseday night. The hardest part was that the time for checkout kept getting later and later, so we couldn't complain! (Mum could though as she was waiting in the car for over an hour with the kids trying to get them to sleep).
- Friday 18 Jan.
Had Daisy's 5th birthday today with a little party. Trying to keep things as normal as they can be with all of this going on. Simon played Simon say's (at the party, not just by himself).
Monday, February 4, 2008
- Thursday 17 Jan.
A group of doctors met on Wednesday and decided it was either osteo sarcoma which responds well to chemo, or mfh of bone sarcoma which doesn't! We are obviously praying it is the osteo one. Prof. Toner gave us a rough plan of what the treatment plan will be. 10 weeks of various chemo, then remove the shin bone affected by the tumor, followed by 20 - 30 weeks of chemo again. He then listed off various possible side affects of chemo. This was pretty overwhelming initially, because now it wasn't just the cancer, which seemed more than enough on it's own!
There were things like the possibility of dying from a simple old cold, sometimes leukemia can be caused by chemo, infertility, tinitis (ringing in your ears forever), pins and needles in hands and feet and other things I don't remember. It seemed pretty daunting. We sort of needed to try not to think to much about them all. So again, after about one day of dealing with this, it seemed alright again.
- Tuesday 15 Jan.
Had our first appointment with Prof Toner (again, amazing to have expert in Sarcoma chemotherapy one hour away). Not able to tell us too much because still unsure which type of sarcoma it was.
- Saturday 12 Jan.
Had a lovely day at Anglesea beach with Fiona and the kids.
- Thursday 10 Jan.
We had an appointment with Professor Choong. It was amazing to be diagnosed with a rare form of cancer and to have one of the top specialists in sarcomas, in the world one hour down the road. We were having constant reminders of answered prayers.
It was scary sitting in his office as he looked over the results. He confirmed it was a sarcoma, but they weren't sure what kind it was because there was no bone tissue found in the biopsy. They were pretty sure it was one of three kinds (there are about 50 kinds of sarcomas). He told us that Simon would have chemotherapy, then an operation to remove the shin bone affected by the tumor, followed up by a bit of chemotherapy. He also told us that the success rate was about 75%. This was better news than we had recieved on Friday 21st of December, but not as good as we thought we recieved on Thursday 3rd Jan. We thought "unlikely to die from it" meant more like a 95% success rate or something. I guess we had also started to think that it wasn't as likely to be a sarcoma from what the doctor had said. Still, we were thankful for this positive news and after about one day of not feeling too great, started to feel OK again.
- Wednesday 9 Jan.
Fiona arrived from England for her first trip to Australia. This was REALLY exciting. It was just great to have her here for two weeks, especially knowing that he wasn't riddled with tumors! It went too quickly.
- Thursday 3 Jan.
At the end of the tests for that day Marika told us that a doctor was going to come and talk to us. We were'nt sure why and wondered if it was bad news. We had been able to see the scans as they were happening which was weird. Simon hadn't wanted to in-case he was riddled with tumors or we would see things that we would read too much into, but Marika assured us it would be OK to see.
We had seen things that looked the same color as his tumor, so thought it had possibly spread, so prayed like crazy while we waited for what seemed like 1 hour but was about 5 minutes for the Doctor who was able to tell us that there were no signs of other tumors and the shading we saw in his other shin was probably arthritis. This was amazingly great news. Up until this moment we had really thought because of the aggressive nature of sarcomas, that it would be everywhere. The Doctor told us that it would be unlikely that he would lose his leg or die from this. She even thought that the activity shown in the scans meant it may not even be a sarcoma. It seemed like the best news we had ever had!
- Wednesday 2 Jan.
The tests finally began at St Vincent's hospital. Marika, the lady doing the tests was really, really lovely. A perfect lady to be doing these tests and helping us to feel at ease. I was allowed in for most of the tests. Over 3 days he had chest x-rays, bone scans, tissue scans, and a biopsy.
- Had a nice few days over new year with friends and family. Our wonderful cousin Stephen (a doctor) was able to speak to a specialist in Melbourne and told us that things had changed alot since he and Dr Sheehan had last learnt about Sarcomas, that now losing a limb was a last resort. This was very lovely news to have while we waited for tests etc...
- Tuesday 25 Dec.
Again amazed at what a lovely day we had. Went up to McDiarmid's for Christmas lunch and dinner with everyone. Carolyn and I kicked a football at Simon, trying to get a goal, but not.
- Monday 24 Dec.
Had scooter races at Sparrow Park, then Christmas Eve camping on lounge room floor, watched Drummer Boy with kids then when they fell asleep (not until 10.30) watched It's a wonderful life which we watch every year. It was amazing that we were having really nice times. We had moments of overwhelming sadness, but for anyone who knows what a boo-hoo baby I am even when things aren't actually sad, this was certainly weird and an obvious answer to prayer. Meanwhile Simon of course played on the cancer "Ooh, I can't do this, oooh I couldn't possibly do that" (said in high pitched voice).
- Sunday 23 Dec.
Overwhelmed at church at how blessed we are to be surrounded by such amazingly lovely people.
- Saturday 22 Dec. Simon's 34th birthday.
Well, my presents to Simon, a book and a pair of flip-flops (thongs) seemed a bit cruel, because if he didn't die, he was only going to have one leg, and the title of the book that he'd wanted was "Heaven and Hell, what happens after death" so that was interesting! We managed to have a better day than we thought we would. We had a fun morning playing with the kids and had a yummy dinner at mum's with the family. The nicest thing was the love and support shown from friends and family. We had so many calls, letters and emails from people, prayer meetings organised, endless offers of help, and all of them genuine. We felt (and continue to feel) very, very blessed.
- Friday morning 21 December.
I was at the hairdresser when I noticed I had three missed calls on my phone from Simon. I called him back and he asked where I was as he had finished work early for the Christmas break. I told him I was nearly finished and would meet him down the road at mum's as she was looking after the kids. I didn't suspect anything, I was just excited to see him waiting across the road when I got out. As we hugged I realised something was wrong and he told me he had to go in to the doctor as the MRI had shown the bump was actually a tumor. It was a bit of a shock. A couple of hours later we were at the doctor's. As we walked in, before we'd even sat down he started saying the news wasn't too good. Most of what he said seems a bit of a blur, but he kept saying the word "sarcoma". I had never heard of this, so made him write it down. He said it is the most aggressive form of bone cancer and a good outcome would be to lose his leg rather than his life. Simon kept suggesting they take his leg off now, Dr Sheehan told him he was being irrational. The next appointment was with Prof. Choong at St.Vincents in Melbourne on the 10th of Jan. This seemed too long for Simon and he again suggested they just take his leg off now! I didn't think it seemed too long, until I was actually waiting. We left the doctor's with heavy hearts and a piece of paper with the word sarcoma scribbled on it. We sat in our car outside the doctor's, in the rain for quite a while. Wondering what to do next. We cried a bit, we prayed alot. It was pretty sad and scary calling people and telling them, especially Fiona (Simon's mum) in England. At this time it seemed more likely that he would'nt make it. We were supposed to be going out for dinner that night for Simon's birthday (the next day). So we tried, we sat in the restaurant looking at the menu and decided the songs the pianist was playing were too sad, so we went organic food shopping instead and had a surprisingly nice time. It took about two days of lots of ups and downs to start to feel OK and begin dealing with it all.
The beginning...
OK, I am going to try to be organised about this so that people can be up to date on what's happening with Simon and the cancer etc... I apoligise in advance if I turn out to be not so organised.
Well it all really started back in October at our church's annual fundraising footy match. Simon, being so good at footy (!) was of course playing and while quite possibly running away from the ball, someone's head (thankfully) fell on his left shin. It didn't bother him too much though, as he also hurt his back, so was busy crying about that. A couple of months later his shin was still a bit sore and a bump that Simon only noticed after the footy match, was still there so he went to the doctor to check it out. The doctor wasn't too concerned as bruised shins often take a couple of months to heal, but advised him to have an ultra sound and MRI to rule out bone cancer.
A group of doctors met on Wednesday and decided it was either osteo sarcoma which responds well to chemo, or mfh of bone sarcoma which doesn't! We are obviously praying it is the osteo one. Prof. Toner gave us a rough plan of what the treatment plan will be. 10 weeks of various chemo, then remove the shin bone affected by the tumor, followed by 20 - 30 weeks of chemo again. He then listed off various possible side affects of chemo. This was pretty overwhelming initially, because now it wasn't just the cancer, which seemed more than enough on it's own!
There were things like the possibility of dying from a simple old cold, sometimes leukemia can be caused by chemo, infertility, tinitis (ringing in your ears forever), pins and needles in hands and feet and other things I don't remember. It seemed pretty daunting. We sort of needed to try not to think to much about them all. So again, after about one day of dealing with this, it seemed alright again.
- Tuesday 15 Jan.
Had our first appointment with Prof Toner (again, amazing to have expert in Sarcoma chemotherapy one hour away). Not able to tell us too much because still unsure which type of sarcoma it was.
- Saturday 12 Jan.
Had a lovely day at Anglesea beach with Fiona and the kids.
- Thursday 10 Jan.
We had an appointment with Professor Choong. It was amazing to be diagnosed with a rare form of cancer and to have one of the top specialists in sarcomas, in the world one hour down the road. We were having constant reminders of answered prayers.
It was scary sitting in his office as he looked over the results. He confirmed it was a sarcoma, but they weren't sure what kind it was because there was no bone tissue found in the biopsy. They were pretty sure it was one of three kinds (there are about 50 kinds of sarcomas). He told us that Simon would have chemotherapy, then an operation to remove the shin bone affected by the tumor, followed up by a bit of chemotherapy. He also told us that the success rate was about 75%. This was better news than we had recieved on Friday 21st of December, but not as good as we thought we recieved on Thursday 3rd Jan. We thought "unlikely to die from it" meant more like a 95% success rate or something. I guess we had also started to think that it wasn't as likely to be a sarcoma from what the doctor had said. Still, we were thankful for this positive news and after about one day of not feeling too great, started to feel OK again.
- Wednesday 9 Jan.
Fiona arrived from England for her first trip to Australia. This was REALLY exciting. It was just great to have her here for two weeks, especially knowing that he wasn't riddled with tumors! It went too quickly.
- Thursday 3 Jan.
At the end of the tests for that day Marika told us that a doctor was going to come and talk to us. We were'nt sure why and wondered if it was bad news. We had been able to see the scans as they were happening which was weird. Simon hadn't wanted to in-case he was riddled with tumors or we would see things that we would read too much into, but Marika assured us it would be OK to see.
We had seen things that looked the same color as his tumor, so thought it had possibly spread, so prayed like crazy while we waited for what seemed like 1 hour but was about 5 minutes for the Doctor who was able to tell us that there were no signs of other tumors and the shading we saw in his other shin was probably arthritis. This was amazingly great news. Up until this moment we had really thought because of the aggressive nature of sarcomas, that it would be everywhere. The Doctor told us that it would be unlikely that he would lose his leg or die from this. She even thought that the activity shown in the scans meant it may not even be a sarcoma. It seemed like the best news we had ever had!
- Wednesday 2 Jan.
The tests finally began at St Vincent's hospital. Marika, the lady doing the tests was really, really lovely. A perfect lady to be doing these tests and helping us to feel at ease. I was allowed in for most of the tests. Over 3 days he had chest x-rays, bone scans, tissue scans, and a biopsy.
- Had a nice few days over new year with friends and family. Our wonderful cousin Stephen (a doctor) was able to speak to a specialist in Melbourne and told us that things had changed alot since he and Dr Sheehan had last learnt about Sarcomas, that now losing a limb was a last resort. This was very lovely news to have while we waited for tests etc...
- Tuesday 25 Dec.
Again amazed at what a lovely day we had. Went up to McDiarmid's for Christmas lunch and dinner with everyone. Carolyn and I kicked a football at Simon, trying to get a goal, but not.
- Monday 24 Dec.
Had scooter races at Sparrow Park, then Christmas Eve camping on lounge room floor, watched Drummer Boy with kids then when they fell asleep (not until 10.30) watched It's a wonderful life which we watch every year. It was amazing that we were having really nice times. We had moments of overwhelming sadness, but for anyone who knows what a boo-hoo baby I am even when things aren't actually sad, this was certainly weird and an obvious answer to prayer. Meanwhile Simon of course played on the cancer "Ooh, I can't do this, oooh I couldn't possibly do that" (said in high pitched voice).
- Sunday 23 Dec.
Overwhelmed at church at how blessed we are to be surrounded by such amazingly lovely people.
- Saturday 22 Dec. Simon's 34th birthday.
Well, my presents to Simon, a book and a pair of flip-flops (thongs) seemed a bit cruel, because if he didn't die, he was only going to have one leg, and the title of the book that he'd wanted was "Heaven and Hell, what happens after death" so that was interesting! We managed to have a better day than we thought we would. We had a fun morning playing with the kids and had a yummy dinner at mum's with the family. The nicest thing was the love and support shown from friends and family. We had so many calls, letters and emails from people, prayer meetings organised, endless offers of help, and all of them genuine. We felt (and continue to feel) very, very blessed.
- Friday morning 21 December.
I was at the hairdresser when I noticed I had three missed calls on my phone from Simon. I called him back and he asked where I was as he had finished work early for the Christmas break. I told him I was nearly finished and would meet him down the road at mum's as she was looking after the kids. I didn't suspect anything, I was just excited to see him waiting across the road when I got out. As we hugged I realised something was wrong and he told me he had to go in to the doctor as the MRI had shown the bump was actually a tumor. It was a bit of a shock. A couple of hours later we were at the doctor's. As we walked in, before we'd even sat down he started saying the news wasn't too good. Most of what he said seems a bit of a blur, but he kept saying the word "sarcoma". I had never heard of this, so made him write it down. He said it is the most aggressive form of bone cancer and a good outcome would be to lose his leg rather than his life. Simon kept suggesting they take his leg off now, Dr Sheehan told him he was being irrational. The next appointment was with Prof. Choong at St.Vincents in Melbourne on the 10th of Jan. This seemed too long for Simon and he again suggested they just take his leg off now! I didn't think it seemed too long, until I was actually waiting. We left the doctor's with heavy hearts and a piece of paper with the word sarcoma scribbled on it. We sat in our car outside the doctor's, in the rain for quite a while. Wondering what to do next. We cried a bit, we prayed alot. It was pretty sad and scary calling people and telling them, especially Fiona (Simon's mum) in England. At this time it seemed more likely that he would'nt make it. We were supposed to be going out for dinner that night for Simon's birthday (the next day). So we tried, we sat in the restaurant looking at the menu and decided the songs the pianist was playing were too sad, so we went organic food shopping instead and had a surprisingly nice time. It took about two days of lots of ups and downs to start to feel OK and begin dealing with it all.
The beginning...
OK, I am going to try to be organised about this so that people can be up to date on what's happening with Simon and the cancer etc... I apoligise in advance if I turn out to be not so organised.
Well it all really started back in October at our church's annual fundraising footy match. Simon, being so good at footy (!) was of course playing and while quite possibly running away from the ball, someone's head (thankfully) fell on his left shin. It didn't bother him too much though, as he also hurt his back, so was busy crying about that. A couple of months later his shin was still a bit sore and a bump that Simon only noticed after the footy match, was still there so he went to the doctor to check it out. The doctor wasn't too concerned as bruised shins often take a couple of months to heal, but advised him to have an ultra sound and MRI to rule out bone cancer.
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